Pediatric Neuropsychology Case Studies PDF

Pediatric Neuropsychology Case Studies:
From the Exceptional to the Commonplace

Jennifer Niskala Apps l Robert F. Newby
Laura Weiss Roberts
Editors
Pediatric Neuropsychology
Case Studies
From the Exceptional to the Commonplace
Editors
Jennifer Niskala Apps Robert F. Newby
Medical College of Wisconsin Medical College of Wisconsin
Department of Psychiatry and Departments of Neurology
Behavioral Medicine 9200 W. Wisconsin Ave.
9000 W. Wisconsin Ave. Milwaukee WI 53226
Milwaukee WI 53226 USA
USA
Laura Weiss Roberts

Medical College of Wisconsin
Department of Psychiatry and
Behavioral Medicine
9000 W. Wisconsin Ave.
Milwaukee WI 53226
USA
ISBN 978-1-4419-6080-1 e-ISBN 978-0-387-78965-1

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Library of Congress Control Number: 2009944166
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To those who have always believed and encouraged, beginning with my
unconditionally loving mom and continuing with my inspirational husband.
—JNA
For David, Michael, Kate, and Anna: Parents learn from their children.
—RFN
For my beautiful, resilient, compelling children, Madeline, Helen, Willa,
and Thomas.
—LWR
Preface
For each one of us, life is a story. Our own story. It begins before we are born and is
written slowly, painstakingly, a day at a time – or at some moments in a sudden
flurry. Each person who touches our lives writes a bit of that story, and in turn we
touch others and write bits of their stories. Our story is a collection of our
experiences, evidence of our impact in the world, and the knowledge we have of
ourselves as individuals. When a child comes into the life of parents, several stories
unite. We imagine this union, growing up on the expectation that parenthood, and
childhood, should somehow be uniquely perfect. So what then happens when an
unexpected chapter of that story is introduced?
We have all heard that children are not born with a “how to” manual. No parent
raising a child doubts the truth of this statement. However, for some parents, the
immensity of this truth can seem difficult to bear. Some parents face the task of
writing entire chapters of their child’s life while dealing with trauma, illness, and
disabilities, which were never supposed to happen.
A pediatric neuropsychologist is both fascinated and frustrated by these chapters
in children’s lives. For most of us, we venture into this career because of our love
for children and our intense desire to help those children in need. A neuropsychol-
ogist’s career begins with training in psychology, focusing on the “normal” and
aberrant development of people, behaviorally and emotionally. We then turn our
focus to the cognitive functions, studying the relationship of the brain to behaviors.
In pediatric neuropsychology, these diligently applied skills are used to listen
to each child’s story, interpret each parent’s experience, evaluate the brain’s
functional abilities, and try to find ways to guide the story’s path.
The unconditional love of a parent resonates beauty. Each pediatric professional
who intervenes in a child’s life helps teach a family how to understand and grow
with their child. Those of us who work in these professions know, on a personal
level, how moving and amazing these stories of love can be. It is with respect to the
journey children take that we collected some of those stories here.
Our intention in creating this book was to represent the incredible diversity of
challenges that many children and their families work so hard to understand and
overcome, while acknowledging the professionals witnessing and mediating this
process. By bringing such a wide collection of stories to the reader, we offer insight
into the field of pediatric neuropsychology but also into the lives of the children and
vii
viii Preface
families with whom we work every day. This book is intended to inform our
colleagues not only in pediatric neuropsychology but in all fields of intervention
for children who are struggling, and we have attempted to include many of their
voices as authors. In addition, we hope to educate students across disciplines and
bring a sense of recognition to families with similar battles.
This book is divided into three sections, with individual chapters telling the
personal story of a child and family seeking help. The first part presents cases of
children experiencing unexpected neurological insults resulting in interruptions in
their development. The second part, by contrast, acquaints the reader with children
experiencing unique patterns of development. Finally, the third part presents cases
that raise questions, particularly with different interpretations from various points
of view and by various areas of expertise.
Each chapter, or story, is intended to both stand alone and contribute to the whole
of the book. Please feel free to read selectively the chapters relevant to your interests,
or start at the beginning and follow our retelling as we lead you along. An appendix is
provided at the end of the book compiling all the different tests, or assessment
measures, used throughout with brief explanations of how to interpret various scores.
Key terms presented in chapters are defined at the end of each chapter. Some of these
terms are unique to a case, while others may reoccur many times. Similarly, each
chapter provides recommendations for intervention, and at times these recommenda-
tions may overlap across chapters. Much like the unique needs of the children
represented here, we believe each chapter has unique needs for the presentation of
information. Therefore, it was decided on a case-by-case basis, with the guidance of
the authors who knew these children best, what terms, tests, recommendations, and
information needed to be presented. We have endeavored for symmetry across the
chapters, although we also hope the individual character of each child shines through.
This book has been an exciting and challenging project. The initial invitation
from Springer Publishing to consider a book such as this left us literally giddy with
anticipation. The chance to contribute something to our field representing the hard
work we commit to children and families every day was both daunting and awe
inspiring. All the contributing authors responded with enthusiasm as they com-
pleted their chapters, seeming to find joy in letting go of their clinical role for a brief
moment, instead connecting individually with and sharing these children’s stories.
For us as editors and authors, we are immensely grateful to each one of you who
worked with us. Your passion for each child’s story is what gives this book life.
“Thank you” also to the families and children whose lives will help write the
chapters of other families’ stories now; to our own families, for the support and love
that make our personal stories so rich; to our faithful and tireless editorial assistant,
Ann Tennier, without whom this book would never have taken form: Your support
and organization made reality out of creativity.
Most of all, thanks to all the students, professionals, parents, and families who
work every day to create a better life for a child.
Jennifer Niskala Apps
Robert F. Newby
Laura Weiss Roberts
Contents
Part I Dangers of Childhood: Neurological Disorders
1 Beating the Odds: Prematurity and Posthemorrhagic Hydrocephalus 3

Jennifer I. Koop
2 Never, Ever Shake a Baby: Pass It On . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

Amy K. Heffelfinger
3 Grand Larceny in the First Grade: Traumatic Brain

Injury in the School-Aged Years . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23
Jonathan E. Romain
4 A Slippery Descent: Adolescent Traumatic Brain Injury . . . . . . . . . . . . . . 33

Peter L. Stavinoha
5 Steamrolled: Sports-Related Concussions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43

Michael Sharland and Thomas A. Hammeke
6 Bad Signs: Sickle-Cell Disease and Stroke . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 51

Kimberly Rennie Weissgerber and Amanda Epping
7 Life Interrupted: Medulloblastoma . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 59

Peter L. Stavinoha
8 The Mystery of the Falling Grades: Seizure Disorder . . . . . . . . . . . . . . . . . . 69

Lynn Bennett Blackburn
9 When Half a Brain is Better than One: Recurrent Seizures . . . . . . . . . . . 77

10 Pathological Left-Handedness: Stroke and Seizures . . . . . . . . . . . . . . . . . . . . 87

Elizabeth N. Adams
ix
x Contents
11 Moving Forward: Psychotherapy with a Youth

After Brain Injury . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 97
Mary C. Kaven
12 Family Matters: Psychosocial Factors on Neuropsychological

Outcome . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 109
Grace W. Fong
13 Dog Attack: Physical Trauma with Associated Brain Injury . . . . . . . . 121

14 Back to Life: Anoxic Brain Damage in a Near Drowning . . . . . . . . . . . . 129

John M. Oestreicher
Part II How It Can All Go Wrong: Developmental Disorders
15 The Energizer Bunny Meets Shirley Temple: Attention

Deficit Hyperactivity Disorder, Combined Type . . . . . . . . . . . . . . . . . . . . . . 141
Michael J. Zaccariello
16 ‘‘He is not Working up to Potential’’: Atypical Attention

Deficit Hyperactivity Disorder with Executive Weaknesses . . . . . . . . . . 151
Jennifer Niskala Apps and Dawn Pflugradt
17 Sorting Sounds: Reading Disability with Phonological

Awareness Deficit . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 159
Robert F. Newby
18 Well Compensated But Never Quite Solved: Lingering Dyslexia . . . . 167

Robert F. Newby
19 Emily Confronts Her Fiercest Bear: Word Reading Disorder

with Naming Speed and Phonological Deficits . . . . . . . . . . . . . . . . . . . . . . . . 175
Molly Drake Shiffler
20 A Tale of Two Assessments: Reading Fluency . . . . . . . . . . . . . . . . . . . . . . . . 191

Kara Lindstedt and Michael J. Zaccariello
21 Lost in Space: Nonverbal Learning Disability . . . . . . . . . . . . . . . . . . . . . . . . 201

Richard J. Clark
22 Beyond Diagnosis: Applied Behavior Analysis Treatment

of Moderate Autism Spectrum Disorder . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 217
Christopher P. Wiebusch
Contents xi
23 When Quirks and Quick Learning Create a Quandary:

Mild Autism . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 231
Elizabeth N. Adams
24 On Eggshells: Pediatric Bipolar Disorder . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 245

25 It Helps to Know Genetic Basis: Williams Syndrome

as an Example of Cognitive Disability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 255
Bonita P. Klein-Tasman, Frank J. Gallo, Kristin D. Phillips,
and Kathi M. Fine
26 Mixed Bag: Tics, Compulsions, and More . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 267

Kenneth L. Grizzle
Part III Things that Go Bump in the Night:

Interesting Questions and Controversies for Our Field
27 A ‘‘Sensational’’ Way to Understand and Serve Children:

Illustration of a Sensory Processing Model . . . . . . . . . . . . . . . . . . . . . . . . . . . . 281
Winnie Dunn
28 Sense and Sensibility: Relating Behavior Control Issues

with Self-Regulation of Sensory Input . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 295
Robert F. Newby and Winnie Dunn
29 Elusive, Inclusive, or Conclusive? (Central) Auditory

Processing Disorder . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 307
Susan Oliff Carneol
30 A Little of This, A Little of That: (Central) Auditory

Processing Disorder . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 325
Lisa R. Cox
31 A Hunt for the Elusive Neuropsychological Impairment:

Conversion Disorder . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 335
32 A Mystery of Perplexing Symptoms: Neuropsychological

Assessment in a Case of Dysautonomia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 343
Robert F. Newby and Safwan S. Jaradeh
Appendix Description of Tests and Reported Scores . . . . . . . . . . . . . . . . . . . . . 351

Index . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 357
Contributors
Elizabeth N. Adams
Minnesota Epilepsy Group, Saint Paul, MN

Department of Psychiatry and Behavioral Medicine, Medical College of Wisconsin,
Milwaukee, WI
Children’s Hospital of Wisconsin, Milwaukee, WI

Departments of Neurology and Pediatrics, Medical College of Wisconsin,
Milwaukee, WI
Susan Oliff Carneol

Children’s Hospital of Wisconsin, Milwaukee, WI
Richard J. Clark
St. Francis Children’s Center, Glendale, WI
Wisconsin School of Professional Psychology, Milwaukee, WI
Lisa R. Cox
Department of Neurology, Medical College of Wisconsin, Milwaukee, WI
Winnie Dunn
Department of Occupational Therapy Education, University of Kansas Medical
Center, Kansas City, KS
Amanda Epping
Medical College of Wisconsin, Milwaukee, WI
Kathi M. Fine
Department of Psychology, University of Wisconsin, Milwaukee, WI
Grace W. Fong
Children’s Healthcare of Atlanta, Atlanta, GA
xiii
xiv Contributors
Frank J. Gallo
Kenneth L. Grizzle
Department of Pediatrics, Medical College of Wisconsin, Milwaukee, WI
Thomas A. Hammeke
Amy K. Heffelfinger
Departments of Neurology, Neurosurgery, and Pediatrics, Medical College of
Wisconsin, Milwaukee, WI
Safwan S. Jaradeh
Mary C. Kaven
Department of Psychiatry, Child and Adolescent Division, University of New
Mexico School of Medicine, Albuquerque, NM
Bonita P. Klein-Tasman
Jennifer I. Koop
Milwaukee, WI
Kara Lindstedt
Department of Clinical Psychology, Marquette University, Milwaukee, WI
Robert F. Newby
Milwaukee, WI
John M. Oestreicher
Affinity Medical Group, Appleton, WI
Dawn Pflugradt
Milwaukee, WI
Kristin D. Phillips
Laura Weiss Roberts

Department of Psychiatry and Behavioral Medicine, Department of Population
Health, Center for the Study of Bioethics, Medical College of Wisconsin,
Milwaukee, WI
Part I
Dangers of Childhood: Neurological
Disorders
Children are perfect in their parents’ eyes. Although parents may know their
children have flaws and weaknesses, their children complete them in a way that
often blinds parents to those qualities. Parents’ love for their children is so strong
and absolute that they forget all else. They defend their children fiercely and protect
them passionately, and when their child is injured or hurt by something outside of
their control, parents can be overcome.
This section presents a series of cases in which children experience unexpected
deviations in their otherwise normal development. Their parents are often beset by
the severity and enormity of what has happened. Each parent’s question to the
pediatric neuropsychologist is slightly different. Some are not ready to hear what
their child now needs, while others cannot get the information quickly enough. In
every case, managing the child’s and the family’s needs is a delicate balance.
This section opens with a chapter about premature birth. According to the March
of Dimes Web site, http://www.marchofdimes.com/, premature birth is the number
one obstetrical complication in the United States. For parents first meeting their
new child, prematurity adds a stressful and frightening chapter to their story.
The next four chapters describe children experiencing head injuries from differ-
ent circumstances. The developing brain can be injured in various ways, with a
range of short and long-term sequelae. According to the Centers for Disease Control
Web site, http://www.cdc.gov/ncipc/tbi/TBI.htm, brain injuries are the leading
cause of death and disability in children and adolescents. Further, one-third of all
pediatric injuries involve some form of brain injury. The causes of these injuries
vary greatly by age and ethnicity. Under age 5, falls are the most frequent cause.
Motor vehicle crashes are another common cause of these injuries. Mild traumatic
brain injuries (TBIs) can occur with concussion, either because of injuries or sport-
related activities. Of children under age 14, an estimated 475,000 TBIs occur each
year, and children under age 4 are at highest risk. In addition, brain injuries in
infants are a particular concern when they result from Shaken Baby Syndrome.
Although it is difficult to estimate the prevalence of this trauma, the National Center
on Shaken Baby Syndrome approximates that 20% of infants presenting for medical
care with these injuries will die, with the majority of the survivors having perma-
nent brain injuries (http://dontshake.com/).
2 Dangers of Childhood: Neurological Disorders
The following seven chapters present children with medical illnesses disrupting
their development and resulting in neuropsychological sequelae. Many acute and
systemic medical illnesses can have long-standing impact on the developing brain,
resulting in neurological trauma. The National Cancer Institute reports that just
over 3 of every 100,000 children will be diagnosed with some form of brain cancer
(http://seer.cancer.gov/publications/childhood/). Not only can the experience of
cancer itself result in neurological insults, but the treatments used for cancer,
including radiation and chemotherapy, have documented long-term effects on a
child’s mental capacities.
Seizure disorders also cause neurological insults for children. According to the
Epilepsy Foundation (http://www.epilepsyfoundation.org), each year 120,000 chil-
dren under age 18 years will experience a seizure and 45,000 children will develop
epilepsy. At any given moment 326,000 children in elementary school and junior
high school have epilepsy. The neurological impact of this illness can range from
mild to severe, depending on the location and type of seizure activity, seizure
frequency and severity, and the medical interventions used to treat the seizures.
The last two of these seven chapters highlight the impact such difficulties can
have on families. When a child experiences an illness or injury, particularly a life-
threatening one, the dynamics of the family change. Parents work to protect and
conserve their family’s identity while focusing on making things ‘‘better.’’ As
neuropsychologists, we often must address the family’s needs in addition to the
child’s cognitive, social, and emotional needs. Chapter 11 particularly highlights
the interaction between neuropsychology and therapy. Chapter 12 also touches on
the complications of the family’s vs. the children’s needs, while presenting a
different etiology of developmental disruption.
Chapters 13 and 14 relay stories of children experiencing more unusual acci-
dents. Although many childhood accidents result in direct brain injuries, some
result in indirect neurological insult. In these two chapters, injuries to the child’s
body, through physical injury in one case and anoxia, or lack of oxygen, in the
other, resulted in long-term neuropsychological sequelae. For some families,
making sense of why such apparently random accidents happened to their child is
perhaps the hardest part.
As you read each chapter, you will find several tools to assist in your understand-
ing of the information provided. Key terms are in bold face at their first use and
defined at the end of the chapter, where references for both clinicians and families
are also provided for those wanting more information about the condition(s)
presented. Test scores from neuropsychological evaluations are provided in tables.
The appendix at the end of the book lists the tests and describes normative test
data and standardized scores.
Reference
Langlois, JA, Rutland-Brown, W, Thomas, KE. (2005). The incidence of traumatic brain
injury among children in the United States: Differences by race. Journal of Head Trauma
Rehabilitation. 20(3), 229–238.
Chapter 1
Beating the Odds: Prematurity
and Posthemorrhagic Hydrocephalus
Jennifer I. Koop
Lucy was a miracle child. She overcame extreme odds and significant medical
complications to become a spunky, chatty, child beauty pageant contestant. When
she was referred for an evaluation at age 5 years by a neurosurgeon, she was doing
well academically in a regular-education kindergarten classroom. However, both
her parents and teachers acknowledged that she talked ‘‘too much’’ and had
‘‘selective hearing’’ problems. Directions at home and at school often needed to
be repeated several times before Lucy would comply. Lucy appeared easily
distracted, especially by her own thoughts or stories, which she enjoyed creating
and telling to others. Lucy was also a social butterfly who was indiscriminant in her
socialization and would approach anyone, even strangers, to begin a conversation.
She was described as a very physically active but clumsy young girl who didn’t
enjoy down time. Overall, though, Lucy was simply a happy and delightful little girl
who was immediately liked by all who met her.
Lucy was born 13 weeks early, after 27 weeks of gestation. Weighing less than
2 pounds at birth, her whole body practically fit in the palm of her father’s hand.
Unfortunately, Lucy’s father wasn’t able to hold her as much as he would have
liked during the first 3 months of her life. Lucy stayed in the neonatal intensive care
unit for 11 weeks. She experienced medical complications typically associated with
premature birth, including immature lungs, necessitating use of a ventilator for
several weeks; patent ductus arteriosus, a heart malformation requiring ligation
surgery; retinopathy of prematurity, requiring bilateral eye surgery; and jaundice,
requiring light treatment. Most significantly, on day 3 of life, Lucy sustained a
Grade III intraventricular hemorrhage affecting both cerebral hemispheres
(Table 1.1). She subsequently developed hydrocephalus and underwent 11 spinal
taps to control her intracranial pressure, but placement of a ventriculoperitoneal
shunt was not deemed necessary at the time (Table 1.2).
Once Lucy was discharged home, she was a mellow infant who slept and ate
well. She seemed to develop normally. She walked and talked on time. She did not
demonstrate any unilateral muscle weakness, and her motor skills appeared to be
developing evenly. In fact, Lucy was described as an active toddler who was
J.N. Apps et al. (eds.), Pediatric Neuropsychology Case Studies: 3

From the Exceptional to the Commonplace.
# Springer Science þ Business Media, LLC 2010
4 J.I. Koop
Table 1.1 Papile (1978) grading of intraventricular hemorrhages

Degree of Description Symptoms on imaging studies
severity
Grade I Subependymal hemorrhage Blood observed in the area surrounding the
vessels of germinal matrix only
Blood products reabsorbed before dispersion
into the ventricles or parenchyma
Grade II Intraventricular hemorrhage Minimal dispersion of blood products into
without ventricular dilatation lateral ventricles
No distension of ventricles
Grade III Intraventricular hemorrhage with Blood products evident in ventricular system
ventricular dilatation Distension of ventricles evident on ultrasound
Greater risk of development of hydrocephalus
Grade IV Intraventricular hemorrhage with Blood products evident in ventricles and
parenchymal involvement parenchyma
Parenchymal involvement most often in
frontal regions
Distension of ventricles evident on ultrasound
Greater risk of development of hydrocephalus
Table 1.2 Common complications of premature birth

Respiratory distress syndrome
Bronchopulmonary dysplasia (chronic lung disease)
Necrotizing enterocolitis (gastrointestinal infection)
Patent ductus arteriosus (cardiac malformation)
Infection
Hyperbilirubinemia (significant jaundice)
Apnea (episodes of breathing arrest)
Retinopathy of prematurity (visual abnormalities that can cause blindness)
Intraventricular hemorrhage
constantly on the go. She was referred for early intervention therapies but was
discharged shortly after starting because she demonstrated adequate developmental
progress. Notably, Lucy demonstrated left-hand dominance for manual-motor
tasks, despite the absence of any family history of left-handedness.
Because of her prematurity, Lucy was evaluated by several neurologists and
neurosurgeons over the years. At age 1 year, magnetic resonance imaging (MRI) of
Lucy’s brain revealed abnormalities consistent with hydrocephalus, including
grossly enlarged lateral ventricles with associated atrophy of the surrounding
cortical tissue. However, given the lack of evidence of increased intracranial
pressure and her apparent ‘‘normal’’ development and functioning, surgical inter-
vention was not recommended. Lucy remained healthy. She was diagnosed with
asthma, which is common in children who are born prematurely, but her condition
was well controlled with medications. Repeated imaging studies over the first 4
years of her life suggested stability of the structural neurological abnormalities.
In fact, Lucy was only reevaluated by the neurosurgeon that referred her for
neuropsychological testing after she was hospitalized for a tonsillectomy and
adenoidectomy. The neurosurgeon’s question at the time of the evaluation was
whether Lucy demonstrated any cognitive dysfunction that would suggest a need
for surgical intervention to alleviate her persistently enlarged ventricles but pre-
sumed compensated hydrocephalus. Compensated hydrocephalus is thought to
develop when equilibrium of intracranial pressure is reestablished despite a persis-
tently greater than normal volume of cerebral spinal fluid within the ventricular
system, possibly as a result of enlarged ventricular size.
Test Results
Lucy underwent her first neuropsychological evaluation at age 5 years, 4 months.

She was reevaluated on two other occasions, at age 6 years, 0 months, and age 6
years, 7 months, to monitor the stability of her cognitive profile. The measures
administered on each occasion assessed general intellectual capabilities (Table 1.3),
fine motor skills, attention and executive functioning, and language skills, and the
third evaluation assessed memory functions (Table 1.4). Ideally, specific measures
of visual-spatial skills also should have been included across all evaluations.
However, Lucy’s age at the time of the initial evaluation greatly restricted the
number of available standardized tests with appropriate normative data, resulting in
the somewhat limited battery.
Across all evaluations, Lucy presented as a very sociable and happy child who
smiled frequently. She often initiated conversation with the examiner and talked
almost incessantly unless redirected to the task at hand. Lucy was very imaginative
and went into great detail when sharing stories. Her speech was significant for some
mild articulation difficulties, particularly when pronouncing R, which had resolved
by the time of the third evaluation. Overall, Lucy was cooperative and appeared to
be putting forth her best effort on all tasks. She responded well to praise and
Table 1.3 Intellectual

Differential Abilities Scale – 5 y, 4 m 6 y, 0 m 6 y, 7 m
Upper Preschool Version Scorea Percentile Score Percentile Score Percentile
General conceptual ability score 89 23rd 99 47th 94 34th
Verbal cluster 108 70th 117 87th 116 86th
Verbal comprehension [51] 53rd [53] 61st [55] 69th
Naming vocabulary [59] 83rd [67] 96th [64] 92nd
Nonverbal cluster 74 4th 87 19th 80 9th
Picture similarities [33] 5th [50] 50th [28] 1st
Pattern construction [40] 16th [43] 25th [46] 34th
Copying [38] 12th [39] 14th [47] 38th
Early number concepts [48] 45th [46] 37th [43] 24th
a
Standard score, (scaled score), [T-score], {z-score}.
6 J.I. Koop
Table 1.4 Other cognitive functions

Tests 5 y, 4 m 6 y, 0 m 6 y, 7 m
Score Percentile Score Percentile Score Percentile
NEPSY
Sensorimotor domain 80 9th 87 19th 89 23rd
Imitating hand positions (11) 63rd (8) 25th (11) 63rd
Preferred hand 26th–75th 11th–25th 26th–75th
Nonpreferred hand 26th–75th 26th–75th 26th–75th
Visual-motor precision (1) <1st (5) 5th (4) 2nd
Car
Time 11th–25th 26th–75th >75th
Errors 11th–25th <2nd <2nd
Motorcycle
Time >75th 26th–75th >75th
Errors 3rd–10th <2nd <2nd
Fingertip tapping (8) 25th (12) 63rd (11) 63rd
Repetitions 26th–75th 26th–75th 26th–75th
Sequences 26th–75th 26th–75th 26th–75th
Preferred hand 26th–75th 26th–75th 26th–75th
Nonpreferred 26th–75th >75th 26th–75th
Attention/executive 74 4th 88 21st 110 75th
domain
Tower (8) 25th (11) 63rd (9) 37th
Visual attention (5) 5th (9) 25th (13) 84th
Cats
Time >75th >75th >75th
Omissions 26th–75th >75th >75th
Commissions 26th–75th 3rd–10th 26th–75th
Faces
Time 26th–75th 11th–25th >75th
Omissions >75th 26th–75th >75th
Commissions 3rd–10th 11th–25th 11th–25th
Auditory attention/ (8) 25th (5) 5th (12) 75th
response set
Attention task (9) 37th (5) 5th (12) 75th
Omissions 11th–25th 3rd–10th 26th–75th
Commissions 26th–75th 26th–75th >75th
Response task (6) 9th (6) 9th (11) 63rd
Omissions 11th–25th >75th 26th–75th
Commissions 26th–75th 3rd–10th >75th
Clinical Evaluation of
Language
Fundamentals –
Preschool
Receptive language 116 86th 112 79th Not Administered
Sentence structure (13) 84th (13) 84th
Linguistic concepts (11) 63rd (11) 63rd
Basic concepts (14) 91st (12) 75th
Expressive language 108 8th 114 82nd
Word structure (10) 50th (16) 82nd
(continued)
Table 1.4 (continued)

Tests 5 y, 4 m 6 y, 0 m 6 y, 7 m
Score Percentile Score Percentile Score Percentile
Formulating labels (14) 91st (13) 84th
Recalling sentences (10) 50th (8) 25th
Total language 112 79th 113 81st
Wide Range Assessment
of Memory and
Learning 2
Story memory Not administered Not administered (11) 63rd
Recall (11) 63rd
Recognition (13) 75th
Verbal learning (11) 63rd
Recall (10) 50th
Design memory (9) 37th
Recognition (11) 63rd
Visual learning (7) 16th
Delayed recall 89 23rd
verbally acknowledged that she was doing well on certain tasks. Thus, the results
obtained during the evaluation were thought to provide a valid estimate of her
cognitive functioning.
Review of Lucy’s evaluation results begins with the data from the initial
evaluation at age 5 years, 4 months. At that time, Lucy’s overall intellectual
capabilities fell within the low average range. However, the overall score reflected
a significant discrepancy between solidly average verbal abilities and below aver-
age or borderline visual-spatial or nonverbal abilities. Thus, the overall score is
likely not an accurate estimate of Lucy’s true ability level. Within the nonverbal
domain, Lucy had particular difficulty on two tasks, one that required her to
recognize similarities between simple line drawings and one that required her to
copy increasingly complex geometric figures.
Lucy’s difficulty on the latter task was consistent with her performance on fine
motor tasks. Her fine motor speed in simple finger tapping and motor planning in
copying hand positions were intact. However, her visual-motor integration and fine
motor coordination in completing mazes fell in the impaired range, reflecting poor
motor control. Her attention skills also were mildly to moderately impaired. On a
visual attention task (NEPSY Cats) she demonstrated a rapid and careless response
pattern (as suggested by her speed of completion) and made a significant number of
commission errors, suggesting poor impulse control. Her receptive and expressive
language abilities were average, with little variability between tasks.
Results of the second and third evaluations were generally consistent with those
obtained during the first evaluation. Lucy continued to demonstrate a significant
discrepancy between average to high average verbal skills and borderline to low
average visual-spatial skills. She also continued to demonstrate fine motor difficul-
ties, with evidence of increasing motor planning difficulties with her dominant
8 J.I. Koop
(left) hand. Her attention skills also remained mildly to moderately impaired.
Interestingly, and commensurate with her profile of verbal and nonverbal abilities,
the addition of memory testing in the third evaluation revealed solidly average
memory for verbal material but mildly impaired memory for visual-spatial material.
Formulation and Recommendations
Lucy’s pattern of performance on measures administered during the neuropsychologi-

cal evaluations revealed relative weaknesses and mildly to moderately impaired visual-
spatial abilities, fine motor skills, attention skills, and visual memory. This pattern of
performance, the information gathered through clinical interview with Lucy’s parents,
and Lucy’s medical history are consistent with two neurobehavioral syndromes.
Lucy clearly demonstrated behavioral symptoms and impaired performance on
attention measures that were consistent with Attention Deficit Hyperactivity Disor-
der, Combined Type (ADHD-C). As defined in the Diagnostic and Statistical
Manual of Mental Disorders (DSM-IV-TR) of the American Psychiatric Associa-
tion (2000), ADHD is characterized by a pattern of at least six of nine symptoms of
inattention and impulsivity or hyperactivity that have persisted for at least 6 months
and significantly impact functioning in at least two domains. As outlined in the
history section, Lucy demonstrated many symptoms of inattention, hyperactivity,
and impulsivity since her early toddler years that continue to impact her functioning
at home and school and also were observed behaviorally in the testing environment.
Additionally, and perhaps more importantly, Lucy’s pattern of strengths and
weaknesses was consistent with many aspects of a nonverbal learning disability
(NLD). Although NLD is not a specific learning disability as defined by federal and
most state departments of education, NLD is a syndrome defined by neuropsycho-
logical deficits that significantly impact learning. In general, children with NLD
demonstrate weaknesses and difficulties in visual-spatial processing, visual-motor
coordination, tactile perception, attention, abstract reasoning, problem-solving,
perception of emotions, and social communication. Academic problems in math,
reading comprehension, and the mechanics of written language are common. In
contrast, basic language processing skills, rote verbal memory, reading word
recognition, and spelling are usually relatively strong. The cognitive profile of
NLD is presumed to reflect impairment in nondominant hemisphere functions,
which theoretically are most dependent upon white matter tract integrity.
The neuropsychological profile described earlier and demonstrated by Lucy is
commonly observed in children with a history of prematurity and/or hydrocephalus.
Prematurity is presumed to be associated with attention and motor impairment
because the normal development of these functional systems is disrupted by the
trauma of preterm birth. This disrupted development is thought to be further
exacerbated by the numerous medical interventions that premature infants typically
experience (e.g., ventilation, repeated exposure to anesthesia for surgeries, related
potential hypoxic episodes). The ventricular enlargement and increased intracranial
pressure of hydrocephalus repeatedly have been associated with deterioration of

white matter tract integrity and even delays or decreases in myelination.
Perhaps the most important aspect of Lucy’s repeated neuropsychological testing
is the suggestion of changes in motor, attention, and adaptive behavioral function-
ing. There is some evidence that neuropsychological testing is more sensitive to
subtle changes in neurological status for children with unshunted, compensated
hydrocephalus than other neurological techniques (e.g., computerized tomography
(CT) imaging of changes in ventricular size or external monitoring of intracranial
pressure). Thus correlation of the neuropsychological findings with other clinical
indicators of neurological status (i.e., imaging studies) was recommended to best
appreciate the significance of the observed variability and potentially clinically
significant changes in cognitive performance over an 18-month period.
The data from the repeated evaluations were shared with the neurosurgeon who had
referred Lucy for the initial evaluation. After he had considered the neuropsychologi-
cal results, especially those obtained during the third evaluation, and correlated them
with neuroimaging and physiological data, the neurosurgeon recommended a surgical
procedure called endoscopic third ventriculostomy, in which intracranial pressure
is reduced by draining some cerebral spinal fluid from the third ventricle.
Given Lucy’s cognitive profile and reported academic difficulties, her parents
were encouraged to request a meeting with school personnel to develop and
implement an appropriate Individualized Education Program (IEP). Once the
school personnel determined that Lucy was eligible under federal criteria to receive
an IEP, specific modifications and accommodations within the regular education
classroom could be made.
Lucy’s fine motor and visual-spatial weaknesses suggested that she would
benefit from occupational therapy to strengthen her skills in these areas. Fine
motor and visual-motor integration skills are particularly important during the
early elementary school years because students are taught to print and to write in
cursive, and an increasing number of assignments are dependent upon a student’s
ability to provide written responses.
Lucy’s visual-spatial difficulties impacted her ability to perform many demands
of school. Although specific examples of modifications are provided, the overarch-
ing recommendation was for school personnel to utilize and emphasize Lucy’s
relatively stronger verbal skills to compensate for her visual-spatial difficulties
whenever possible.
Copying problems or other assignments from a book or chalkboard or writing at
length will be very effortful. It was suggested that the requirements for writing be
reduced and that some of Lucy’s assignments and testing be oral. As she progresses
in school, Lucy should begin to receive training in the use of a computer and word
processor to help her prepare her assignments.
Explicit directions simply given orally will be difficult for Lucy if she does not
know how to proceed perceptually. She may need modeling and/or direct teacher
intervention. Reading graphs, maps, and charts may be difficult. Lucy may need
individual help in interpreting these educational materials, primarily though verbal
explanations accompanying the visual material.
10 J.I. Koop
Mathematics instruction should include practical and hands-on tasks. Lucy will
need help with measuring devices and estimating time, size, and distance. Her
visual-spatial impairment suggests that when she learns computational procedures,
she may need to divide her sheet into columns to facilitate placement of the
numbers.
Lucy’s attention deficits will require additional instructional modifications to
maximize her participation in and benefit from academic instruction. She will
require more frequent attentional cueing and support for her relative lack of
organizational skills. Redirection should be provided in a subtle positive manner,
such as a tap on the shoulder or hand on the desk. Preferential seating close to the
teacher or near the front of the classroom will likely help reduce distractions and
position Lucy in a location that facilitates frequent redirection from or checking in
with the teacher. Complex tasks should be broken down into smaller sequential
steps. Instructions should be given one at a time, and longer sets of instructions
should be broken down, repeated, rehearsed, or written down for Lucy. Additional
instruction in organizational skills such as outlining, diagramming, or planning the
sequence of steps to complete a task would be helpful.
It is always difficult to predict cognitive outcomes for young children, especially
in the context of a potentially progressive neurological condition. However, if
Lucy’s hydrocephalus remains stable and does not progress and result in increased
intracranial pressure, it would be presumed that her cognitive profile also would
remain stable. That is, she will likely continue to require interventions for ADHD
and NLD. Use of a stimulant or other attention-enhancing medication may be
warranted at some time to improve her attention capabilities. The underlying
neurological cause of Lucy’s attention difficulties, however, may make pharmaco-
logical intervention more difficult. With regard to the NLD symptoms, Lucy will
likely continue to demonstrate a pattern of verbal strengths and visual-spatial
weaknesses that will impact her academic performance.
Additional Resources
Key Concepts and Terms
Hydrocephalus Accumulation of cerebral spinal fluid within the ventricular system

causing dilatation of ventricles and potentially increased intracranial pressure,
which can compress brain tissue. In early childhood, hydrocephalus also often
results in enlargement of the head circumference. Otherwise known as ‘‘water on
the brain.’’
Intraventricular hemorrhage (IVH) A common complication of premature birth
prior to 32-weeks gestation. IVH involves bleeding within the germinal matrix
surrounding the lateral ventricles. Hemorrhages range in severity and are graded
from I to IV, with IV being the most serious. Hydrocephalus develops following
IVHs in 55% of cases with Grade III and up to 80% of cases with Grade IV
hemorrhages.
Ventriculoperitoneal shunt The most common treatment for hydrocephalus is
placement of a shunting device into the ventricle. The ventriculoperitoneal shunt
is attached to a catheter positioned to end into the abdomen, diverting excess
cerebral spinal fluid into the abdominal cavity.
References
Resources for Clinicians
American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders:
DSM-IV-TR. Washington, DC: American Psychiatric Association.
Dykes, F. D., Dunbar, B., Lazarra, A., & Ahmann, P. A. (1989). Posthemorrhagic hydrocephalus
in high-risk preterm infants: Natural history, management, and long-term outcome. The
Journal of Pediatrics, 114(4 Pt 1), 611–618.
Fletcher, J. M., Brookshire, B. L., Landry, S. H., & Bohan, T. P. (1996). Attentional skills and
executive functions in children with early hydrocephalus. Developmental Neuropsychology, 12
(1), 53–76.
Fletcher, J. M., Francis, D. J., Thompson, N. M., Davidson, K. C., & Miner, M. E. (1992). Verbal
and nonverbal skill discrepancies in hydrocephalic children. Journal of Clinical and Experi-
mental Neuropsychology : Official Journal of the International Neuropsychological Society, 14
(4), 593–609.
Fletcher, J. M., Landry, S. H., Bohan, T. P., Davidson, K. C., Brookshire, B. L., Lachar, D., et al.
(1997). Effects of intraventricular hemorrhage and hydrocephalus on the long-term neurobe-
havioral development of preterm very-low-birthweight infants. Developmental Medicine
and Child Neurology, 39(9), 596–606.
Papile, L. A., Burstein, J., Burstein, R., & Koffler, H. (1978). Incidence and evolution of
subependymal and intraventricular hemorrhage: A study of infants with birth weights less
than 1,500 gm. The Journal of Pediatrics, 92(4), 529–534.
van de Bor, M., & den Ouden, L. (2004). School performance in adolescents with and without
periventricular–intraventricular hemorrhage in the neonatal period. Seminars in Perinatology,
28(4), 295–303.
Resources for Families
Hydrocephalus Association. http://www.hydroassoc.org/

Linden, D. W., Paroli, E. T., & Doron, M. W. (2000). Preemies: The essential guide for parents of
premature babies. New York: Pocket Books.
March of Dimes: Pregnancy, babies, prematurity. http://www.marchofdimes.com/
March of Dimes: Prematurity. http://www.modimes.org/prematurity/prematurity.asp
Chapter 2
Never, Ever Shake a Baby: Pass It On
Amy K. Heffelfinger
At that moment, the sun stopped shining and our happy, carefree world came crumbling
down. We were told our healthy 4½-month-old baby boy was in critical condition and could
die. Our son, Jeremy, had just learned to smile about a week before, and now his smile
was gone.
I remember two doctors addressing me and my family in a small room. Their faces were
without expression. They announced that my son was the victim of shaken baby syndrome
(SBS) and might die. I immediately looked at my mother, a retired nurse, for some
explanation. My mom began to sob; the pain in her face is still etched in my mind. I now
knew how bad it was, but I still had never heard of SBS.
Now Jeremy was in a drug induced coma, and we waited for the swelling in Jeremy’s
brain to stop. We were told that it would stop swelling in 3 days. Four days after Jeremy was
injured, his brain continued to swell, permanently destroying healthy brain cells. He was so
swollen that the doctors could not open his eyes to check his pupils. Two huge vials of fluid
were removed from the top of Jeremy’s head to reduce the pressure. He had two blood
transfusions. A respirator kept him alive. After a week, Jeremy began to seize and screamed
for 14 hours straight until he had to be sedated. This went on for several days. He was
inconsolable. Jeremy was put on phenytoin, an antiseizure medicine. To measure the levels
of this medicine, a daily blood culture needed to be done. Every morning he was awakened
at dawn to have blood drawn from his tiny arm, a terrifying routine.
On the 21st day, we went home. We were told how severe his injury was and that he was
blind in both eyes due to retinal hemorrhages. We did not know what was to come, only
that the road ahead would be long and hard. We only thanked God that we still had our
precious baby.
Jeremy escaped death by a heartbeat, thanks to the skill of professionals, modern
technology, and the fact that heaven was flooded with prayers, and continues to be, on
his behalf. During the first year after his injury, Jeremy had three brain surgeries and to this
day endures daily physical, occupational, and speech therapies. His future, and what he will
be capable of, is unknown. Our son has had to fight and work extremely hard each and every
day of his short life.
Time has helped our family heal and accept what happened to our precious child. His
hair now covers the 7-in. scar on his head. Although he is very sensitive to light, we know
that he can see. He doesn’t use his hands like he should; they hang by his side for
convenience. We have to continue to tell him to walk because his brain and his feet do
not have the complete system down yet. Someday. We have extremely high expectations
for Jeremy because he has continued to prove his doctors wrong. We are blessed with
a close and loving family; all are involved in his care and devoted to his well-being.

14 A.K. Heffelfinger
We travel this profound journey together as a family with Jeremy leading the way. He is
carving a path for us to meander along, different from traditional roads. Still, it echoes with
the sounds of joy and laughter bursting forth from our precious little boy. He is a delightful,
amazing child with much to say, and he sure says it. He is Auntie’s Sweet Pea. He is
Grandma’s Darling Boy. He is Dad’s Little Buddy. He is Mom’s Angel. He is our miracle.
History and Reason for Referral
Jeremy, a 6-year-old boy, was referred for his third neuropsychological evaluation
due to nonadherence to rules and poor attention. He was initially referred at age 4
years by his neurologist due to a history of traumatic brain injury (TBI) due
to SBS.
Jeremy was found unresponsive at the babysitter’s home when he was 4½-
months old. Initial stabilization included intubation and ventilatory support. For 3
days, he presented comatose, with upper extremities rigid and fists clenched, but
was exhibiting reflex of lower extremity movements to pain. He had increased
intracranial pressure, and he received a subdural peritoneal shunt, which drains
from subdural space into the abdominal cavity. He was in the pediatric intensive
care unit for 1 week and in the hospital for 3 weeks. Discharge diagnoses included
SBS, right frontal parietal subdural hemorrhage, retinal hemorrhages, and post-
traumatic seizures. As in many cases with SBS, a previous injury was evident on
brain scans following the events precipitating hospitalization.
Phenytoin was prescribed and discontinued 1 year after the injury. Jeremy’s
retinas recovered, but cortical damage in visual areas was suspected. He received
sensory integration therapy, occupational therapy, physical therapy, and speech and
language therapy through the Birth to Three Program until his third birthday. He
attended a 4-year-old kindergarten program for 2 years and received occupational
and physical therapy services.
Jeremy’s development of course had been interrupted due to the severity of the
abuse. Jeremy’s prenatal development, delivery, and early development were
unremarkable. He was smiling, rolling, and holding his head up before being
shaken, but he lost these skills. He never crawled but sat at 13 months and walked
at 14 months. His gait was abnormal, and he did not use his hands when walking.
His language development was reportedly a strength, and he was speaking several
words by age 1 year.
Emotionally, he was often inconsolable following the injury. He was highly
sensitive to textures and touch, not liking high levels of physical affection. He also
was hypersensitive to sights and sounds, although his hearing, taste, and smell were
believed to be acute and nondisrupted. Jeremy was afraid of animals and sleeping
alone. He was able to verbalize his fears by commanding what to do in situations. In
fact, Jeremy often required control in situations. He was easily disrupted by change
and required routines to be followed. He was very attentive to detail and could be
2 Never, Ever Shake a Baby: Pass It On 15
emotionally frustrated if the doors were not closed or if his clothing was not as he
would like. Jeremy’s parents prepared him for transitions, using timers to indicate
when change would occur. They also adapted to his routines. Socially, Jeremy had
been disinterested in peers until he began school.
Jeremy lived with his mother, a part-time product manager; his father, a teacher;
and his 3-year-old sister. His family history was significant for some obsessive–
compulsive tendencies in his father.
Neuropsychological testing at ages 4 and 5 years indicated several residual
neuropsychological impairments, particularly with visual perception, ataxic and
apraxic motor difficulties, attention, and executive functioning. Jeremy also had
trouble in areas that would require integration of different skills, such as picture
naming and visuospatial construction. He had close to age-appropriate strengths in
verbal knowledge. There were ongoing concerns regarding his oppositional and
controlling behaviors.
Jeremy had been working with a psychologist, focusing on social skills training.
His parents reported that his therapy had been very successful in helping them to
play with him and also with his social development. Jeremy was to attend full-day
kindergarten with the help of an aide, shared among three students, as well as pull-
out occupational therapy services three times a week to work on fine motor skills.
Physical therapy services would be available as needed. He had been attending the
‘‘Handwriting Without Tears’’ program to work on early writing skills.
Jeremy’s parents’ current concerns were regarding how his behavior was hin-
dering his advancement in many areas. Both his teachers and his parents did not
know what he was capable of doing. He was constantly verbally negotiating tasks
he did not want to participate in or he would procrastinate. For example, in therapy
he would make deals such as ‘‘I will do it if you will do it.’’ If he were threatened
with something such as ‘‘we are going to call your mom,’’ he would then immedi-
ately complete the tasks. This type of behavior occurred at home also.
Jeremy’s parents’ felt that his attention had improved and that he was now able to
focus while he was playing. However, although he was able to focus on things that he
was interested in, he continued to be unable to focus on tasks that he did not want to
do. Emotionally he was less fearful than at previous evaluations, but he continued to
have a more fearful personality compared to same-age peers. His parents were very
concerned with his emotional functioning. Daily he would cry for 30 to 60 minutes if
he did not get his way or if someone took his toy. They had not found ways to soothe
him other than to give him his way. They noted that even though his sister was only 3,
she was able to verbally express how she felt, but he was unable to do this. Socially,
he still had difficulties with same-age peers, but he had increased social interests and
interactions with them, which was a significant improvement.
Cognitively, Jeremy’s parents recognized that he continued to be delayed but
reported that he was making gains. For example, he knew his alphabet and could
recognize some letters, and he could count to 30 but could not recognize numbers.
He continued to have a significant tendency to perseverate on things such as motors
or things that have wheels.
Test Results
The threefold purpose of this assessment dictated the assessment battery. First,
because Jeremy had a longstanding history of problems with emotional and behav-
ioral regulation, it was essential to focus on whether there were actual neuropsy-
chological impairments in attention and executive functioning to help explain his
difficulties. Second, it was important to determine the magnitude and rate that he
was gaining neuropsychological skills, using data from the previous evaluations for
comparison. Third, because he was now 6-years old, comprehensive assessments of
cognition and memory were conducted to understand more fully his neuropsycho-
logical functioning. Because of his given difficulties with basic sensory processing
and attentional focus, qualitative observations were carefully made.
Jeremy presented for two evaluations, and his behavior was consistent. He was
unable to separate from his parents, becoming tearful when attempted. However, at
one time during the testing, his father was able to leave the room, and Jeremy
functioned adequately. Each week Jeremy was hesitant at first but quickly warmed
up to the examiners. His behavior was notable for requiring numerous prompts and
reminders to look at visual stimuli to make sure that he had seen them before
responding. He also needed frequent redirection to remain on task, but he was not
hyperactive, nor did he leave his seat. It was clear that he wanted to do well the
majority of the time, but there were occasions where he appeared to answer incor-
rectly to avoid the testing situation. He was very socially engaging and enjoyable to
work with. He continued to have difficulties manipulating his hands, especially on
command. On the basis of these observations, the results were believed to be an
accurate representation of his current level of functioning (Table 2.1).
Specific tests of processing speed (e.g., coding, symbol search) were not given
because of Jeremy’s significant difficulties with visual processing and motor con-
trol; therefore, a Full Scale IQ was not calculated. Overall, Jeremy’s verbal abilities
were in the low average range and represented a significant strength. In contrast, his
overall nonverbal/visuospatial skills were in the mildly mentally deficient range.
His working memory, the ability to hold and mentally manipulate information, was
in the range of borderline impairment (Table 2.2). These findings were consistent
with those from his previous general cognitive testing when he was 4 years old and
continued to document significantly stronger verbal abilities in comparison to
weaker nonverbal/visuospatial skills.
Jeremy continued to have a significantly difficult time completing the motor
tasks that were administered to him. On a measure where he was to tap his fingers
rapidly together and then tap his fingers in a sequence, his performance was
severely affected by his attention in that he was unable to tap consistently for the
time allotted. He also was unable to complete the motor program to tap his fingers
in a sequence. On another task, he was to demonstrate motor planning by copying
finger position movements. This task was discontinued because Jeremy was unable
to do most of the hand positions. These findings suggested that Jeremy continued to
exhibit constructional apraxia, that is, he had difficulty using his hands, copying

Wechsler Intelligence Scale for Children – Fourth Edition Scorea Percentile
Verbal Comprehension Index 81 10th
Perceptual Reasoning Index 59 1st
Working Memory Index 74 4th
Similarities (6)
Vocabulary (7)
Comprehension (7)
Block Design (4)
Picture Concepts (2)
Matrix Reasoning (4)
Digit Span (5)
Letter-Number Sequence (6)
Coding (8)
Symbol Search (10)
a
Standard score, (scaled score), [T score], {z score}.

Tests Score Percentile
NEPSY
Cats
Time 2nd–10th
Omissions <2nd
Commissions <2nd
Attention
Omissions 2nd–10th
Commissions 26th–75th
Tower (2) <1st
Arrows (3)
Memory for faces 75 5th
Kaufman Assessment Battery for Children
Gestalt closure (1)
Wide Range Assessment of Memory and Learning – Second Edition
Verbal learning 85 16th
Delayed recall 90 25th
Recognition 90 25th
Story memory 80 9th
Delayed recall 70 2nd
Recognition 90 25th
Design memory 55 1st
Recognition 90 25th
Sentence memory 85 16th
motor movements, and manual motor sequencing that extended beyond his simple
manual motor problems. He completed a measure of visuospatial integration where
he was to trace within a mazelike racetrack, and he made numerous errors and had
difficulty pacing himself, impairing his performance. Although he had these diffi-
culties, it was important to note that he had been unable to attempt this task at
previous testing.
Measures of visual and auditory attention were very difficult for Jeremy. He had
numerous errors of omission and commission, indicating significant inattention and
impulsivity. Observationally, he had difficulty sustaining attention for any signifi-
cant period of time because he was highly distracted by any thoughts or sounds.
Also, it was very hard for him to learn the rules needed to complete these tasks, such
as ‘‘when you hear the word red, put the red piece in the box.’’ He consistently
forgot the rules or was unable to apply them. For example, Jeremy completed a task
that measures planning ability, sequencing, and strategy generation by requiring
him to rearrange colored balls on pegs of various heights to match a presented goal
configuration. He worked hard but tended to have perseverative responses and was
unable to learn the basic rules.
Jeremy’s ability to understand visual-spatial information was well below that
expected for his age and a primary deficit resulting from his early brain injury. He
had much difficulty on a measure that required him to merge an array of disjointed
pieces of a familiar picture to identify the picture accurately. For example, he
perceived pieces of a face as a leaf, a chair as a dog, and a hammer as a cross. He
exhibited a similar level of difficulty when presented with an array of arrows and
asked which two pointed to the center of a large target. On a task of spatial and
tactile awareness in which Jeremy was blindfolded and asked to place various
shapes in a form-board, he had some difficulty with problem-solving and becoming
organized to complete the task successfully. However, he did not appear to struggle
with the spatial aspects of the task, that is, he seemed to understand spatial relation-
ships. This is consistent with his parents’ report that he has learned the location of
keys on the phone to enter phone numbers.
Jeremy’s performance on a verbal list-learning task was mildly impaired for
immediate recall yet average after a delayed interval and on the recognition trial.
This pattern suggests that his variable attention impacted his ability to learn the
information; however, once the material was learned, he retained it quite success-
fully. Jeremy’s memory for verbal information presented in a context (e.g., stories)
was mildly impaired for both immediate and delayed recall. However, he scored
within the average range on the recognition task. His memory for sentences was
mildly impaired. On tasks of nonverbal memory, his performance was mildly
impaired for recall of faces and severely impaired for recall of geometric designs.
Again, however, his performance was average when he was asked to recognize the
geometric shapes instead of recall them freely from memory. Overall, Jeremy
benefited greatly from cues provided during each recognition trial and scored
well within the average range for both verbal and nonverbal information; this
indicated that he was quite capable of forming new memories and was effectively
retaining information over time.
Results from this testing and observation of Jeremy indicated that activities often
involving right hemispheric activities, such as engaging, disengaging, and sustain-
ing attention, and executive functions that involve learning and applying rules to his
emotional and behavior regulation continued to be severely impaired for Jeremy.
Jeremy’s behavioral difficulties appeared to result primarily from the behavioral
outcome of his impairments. Jeremy was delightfully verbal, with good verbal
knowledge and memory. He was able to talk about many things in a very mature
and age-appropriate way. The content of his verbalizations would often include
words, excuses, and manipulations that he used to justify or distract him from his
severe areas of impairment. Because his verbalizations were accurate rationaliza-
tions, he appeared to be very manipulative and disagreeable when it came to task
completion. However, observation of his skills indicated that Jeremy continued to
have extreme difficulty in learning and applying rules to behavior unless the reward
was high enough to maintain his attention and motivation. Even when complying,
he would easily lose attention and the ability to follow rules. This was an excellent
example of how executive functioning and behavior are related and complimentary,
yet not equivalent. With stricter behavioral management strategies, the parents,
therapists, and teachers were able to decrease noncompliance while not alleviating
the difficulties with executive functioning.
Jeremy’s difficulties appeared similar to the behavioral regulation problems of
a child with a developmental attention deficit hyperactivity disorder (ADHD).
However, Jeremy’s attention difficulties and impulsivity were a primary result of
his early brain injury and, therefore, differed from ADHD in several ways. They
appeared more ‘‘severe’’ to those working with him. Also, he was not hyperactive.
Jeremy’s presentation would fall under the diagnosis of acquired or secondary
ADHD. Medication may help alleviate some of his difficulties. Children with
neurological injuries resulting in primary attention/concentration and impulse-
control problems often do not respond to pharmacologic treatments in the same
way as children who have primary ADHD. Thus, management often requires
trials of several different medications and dosages. Jeremy responded well to
stimulant medication when he was 7 years old and learned to read shortly after
treatment began.
There was no decline in Jeremy’s overall functioning when his present perfor-
mance was compared to that during previous evaluations. (Previous data were
not presented here for the sake of brevity, but comparisons of raw score
increases and steadiness of standard scores over time allowed these conclusions
to be made.) To the contrary, he had shown a steady increase in skill development in
all areas. In areas of strength, verbal knowledge, and reasoning, he had gained
skills rapidly and maintained his standard scores. In areas of weakness, motor,
attention, executive functioning, and visual processing, he made gains in raw

scores, but his standard scores declined because they were less than expected for
his age.
Jeremy presented with an expected difference between verbal and nonverbal
processing. His verbal knowledge and reasoning were low average whereas his
nonverbal abilities were significantly below age expectation. He exhibited very
rudimentary impairments in sensory (especially visual) and motor, attention, and
executive functioning. Because nonverbal measures rely primarily on these under-
lying skills, they are responsible for these impairments. Jeremy’s spatial abilities,
when the motor and visual components were removed, were less disrupted, based
on parent report and testing.
The course of Jeremy’s injuries and the long-standing residual neuropsychologi-
cal, emotional, and functional outcomes are common in SBS (Barlow, Thomson,
Johnson, & Minns, 2005; Duhaime, Alario, & Lewander, 1992; Ewing-Cobbs,
Prasad, Kramer, & Landry, 1999). TBI is one of the leading causes of death and
disability in childhood (Duhaime et al.), and inflicted head trauma, or SBS, is the
leading cause of TBI in children under the age of 2 years. This type of injury cuts
across all demographic lines and is almost always caused by someone the family
knows. Some of the most common presenting symptoms are retinal hemorrhage,
subdural hemorrhage, increased intercranial pressure, and seizures. If the child
survives, the risks include persistent vegetative state, visual disturbances to blind-
ness, mild motor impairments to paraplegia, and learning disability to all levels of
intellectual disabilities. As can be imagined, the toll on families is huge, and of
course, ongoing family factors such as functioning, mental health, and stress can in
turn negatively influence the child’s recovery. The neuropsychological outcome
relates to the severity of the injury. Although research is limited, children with SBS
had impairment in cognitive, language, motor, and emotional and behavioral
regulation (Barlow et al.; Ewing-Cobbs et al.).
Several recommendations were made for the family. First, it was essential that
Jeremy’s parents work with a therapist to improve their behavioral management of
him to provide maximal rewards and emotional motivations to complete daily
living skills and appropriate behaviors. It also was important that his new teachers
review the current and previous evaluations to recognize that the discrepancy
between Jeremy’s verbal skills and other areas of functioning are extreme and are
responsible for his compliance issues in many situations.
It was highly recommended that Jeremy be evaluated by his neurologist for
possible pharmacologic treatment of his inattention and impulsivity. Although, as
stated previously, some children do not respond similarly to children with develop-
mental ADHD, others are quite successful.
To address Jeremy’s weaknesses with visual-perceptual processing, the use of a
systematically, verbally-based step-by-step approach to tasks was encouraged.
Instruction, particularly for subjects that make relatively less use of language
such as mathematics, should be broken into a list of verbal steps. It may be helpful
to test Jeremy’s knowledge of academic material orally, asking him questions and
having someone record his answers.
Jeremy’s ability to recognize previously learned information was much stronger
than his ability to recall that information freely, without structure. Therefore, it was
suggested that he be provided cues or be offered information and asked to choose
the best answer when being evaluated for his knowledge of academic material
whenever possible.
Because it appears Jeremy has relatively well-preserved spatial processing
versus visual perceptual processing, he likely would be successful in learning to
use a keyboard or other similar devices. Also, having him close his eyes might
enable him to better focus, listen, and inhibit visual distractions.
Update
Jeremy is now 9 years old. When he was age 7 years, he began having seizures. His
parents reported that his sensory issues and attention problems returned to the level
of difficulty they had been when he was initially seen at age 4 years. He underwent a
right hemispherectomy and has been seizure-free for 6 months. He has not com-
pleted a postsurgical evaluation at this time.
Peritoneal shunt A mechanical device that diverts cerebrospinal fluid flow from
the ventricles into the peritoneum, which is the serous membrane over the viscera
and lining of the abdominal cavity.
Retinal hemorrhages Bleeding in the retina.
Shaken baby syndrome A syndrome seen in abused infants and children. The
patient has been subjected to violent, whiplash-type shaking injuries inflicted by
the abusing individual. This may cause coma, concussions, and increased intracra-
nial pressure due to tearing of the cerebral veins with consequent bleeding into the
subdural space. Retinal hemorrhages are usually present.
Subdural hemorrhage Bleeding into the space between the arachnoid and dura
mater membranes covering the brain.
References
Barlow, K. R., Thomson, E., Johnson, D., & Minns, R.A. (2005). Late neurologic and cognitive
sequelae of inflicted traumatic brain injury in infancy. Pediatrics, 116(2), 2004–2739.
Duhaime, A. C., Alario, A. J., & Lewander, W. J. (1992). Head injury in very young children:
mechanisms, injury types, and ophthalmologic findings in 100 hospitalized patients younger
than 2 years of age. Pediatrics, 90, 179–185.
Ewing-Cobbs, L., Prasad, M., Kramer, L., & Landry, S. (1999). Inflicted traumatic brain injury:
relationship of developmental outcome to severity of injury. Pediatric Neurosurgery, 31,
251–258.
National Institute of Neurological Disorders Shaken Baby Syndrome. www.ninds.nih.gov/disor-

ders/shakenbaby/shakenbaby.htm
National Center on Shaken Baby Syndrome, www.dontshake.com
Shaken Baby Association, Inc.,www.shakenbaby.net
Chapter 3
Grand Larceny in the First Grade: Traumatic
Brain Injury in the School-Aged Years
Jonathan E. Romain
Cody was the well-behaved, endearing, mild mannered, normally developing,

6-year-old girl any family would be blessed to have. The weather held the first
sign of spring, and Cody’s mother was returning home from running errands with
her only daughter, who just came along for the ride and to get out of the house.
Cody was seat belted and well secured in the vehicle, as she is every time she goes
on a family outing. As the car rounded the corner just before the family’s house, it
slid and deviated into the shoulder of the road, rolling over. After the car stopped,
Cody’s mother, who did not experience any loss of consciousness, exited the car
and took stock of the situation. Somehow during the event, Cody had slipped from
the grasp of her seat belt and gone through the side window, and she was ultimately
found unresponsive several feet from the car. Cody’s mother, in a well-appreciated
panic, scooped up her child and rushed to the closest neighbor’s house. After a
quick call to 911, a helicopter arrived at the scene, and Cody was off to the local
regional medical center. The initial Glasgow coma score en route to the hospital
was 6, suggesting a severe brain injury (Table 3.1).
Cody was initially spontaneously breathing on the scene, although at some point
during the initial moments of hospitalization, her status declined and she required
intubation. A computerized tomography (CT) scan of the head revealed active bleed-
ing within aspects of the right frontal lobe, as well as the right middle portion of the
base of the skull, extending to the right side of the skull. A small amount of subarach-
noid blood and a moderate amount of subarachnoid air also were present, as a
hematoma within the brain tissue. An increase in cerebrospinal fluid (CSF) necessi-
tated a temporary catheter to relieve the pressure. Cody was ultimately stabilized and
eventually extubated. A compounding injury during the crash was an extensive skull
fracture of the facial bones, with the force of impact centering just above her right eye.
Even though the long healing process was just beginning, there was already some
mention that Cody might lose vision in the right eye. Cody’s mother recalls that when
she first heard these details, she did not care about broken bones or the possible vision
loss, only that her daughter awaken from her coma. Once she returned from this
unintended sleep, Cody’s mom was sure she would have her daughter back.

24 J.E. Romain
Table 3.1 Glasgow coma scale

Eye opening Best motor response Best verbal response
E M V
Spontaneous Obeys commands Oriented and converses
4 6 5
To speech Localizes pain Disoriented and converses
3 5 4
To pain Flexion-withdrawal Inappropriate words
2 4 3
No response Flexion-abnormal Incomprehensible sounds
1 3 2
Extension No response
2 1
No response
1
E + M + V = 3–15
GCS of 3–8 is suggestive of a severe brain injury; GCS of 9–12 is suggestive
of a moderate brain injury; GCS of 13–15 is suggestive of a mild brain injury.
Cody was transferred to a larger children’s hospital, where she underwent inten-
sive inpatient rehabilitation care. To the surprise of her mother and practitioners on
the unit, Cody made tremendous gains and quickly progressed from coma to active
engagement in cognitive and physical activities within a 2-week period. Extensive
repair and likely plastic surgery to reconstruct some of the facial features loomed,
but this was still in the distant future. Cody’s right eye remained nonfunctional, and
she had significant ptosis, although that was of little consequence to Cody’s
mother, who was thrilled with the return of her child. She did raise some concern
over Cody’s impatience and poor safety awareness on the unit, but as it is explained
to all parents of children with closed head injury, some disinhibition early in the
recovery was to be expected.
When Cody was back home with her mother, the process of community and
school reintegration began. The timing of the crash was relatively fortuitous (if
there ever can be such a thing as perfect timing in an accident), because Cody had
an entire summer to recover before the new school year. There was a problem,
however. As Cody continued to recover, the poor impulse control persisted and
actually appeared to worsen. Within the first few weeks of school, Cody was almost
constantly reprimanded for verbal outbursts, ‘‘threatening’’ her peers, and even
occasionally making obscene finger gestures to the teacher. She also engaged in
seemingly bizarre behavior, including cutting a portion of her own hair with the
teacher’s scissors and then becoming inconsolable when she realized what she had
done. She also began taking things that were not hers with little thought of the
consequences. Clearly, this transition back was anything but smooth.
Things were not going very well on the home front either. Cody’s mother had
prided herself on being a successful single mother and now she had her parents on
speed dial to help her with the trials of raising a dysregulated child. Cody continued
to retain much of her charm and good-natured personality; however, her persona
3 Grand Larceny in the First Grade: Traumatic Brain Injury in the School-Aged Years 25
was masked by impulsive actions that the well-behaved child would possibly
consider but never actually do.
Prior to considering a neuropsychological evaluation, a crude Individualized
Education Program (IEP) was constructed. This document portrayed Cody as an
oppositional and defiant child, who should be in the most restricted classroom
environment. To be fair, Cody was new to the school, and the teachers and
administration had no history for comparison. The mistake that was being made,
however, was the failure to conceptualize Cody as a child with an acquired injury
rather than as an inherently emotionally and behaviorally disturbed young girl.
The problems continued to escalate as efforts were focused on almost constantly
admonishing Cody for negative attention-seeking behavior. One day, just prior to
the winter holidays, Cody was ‘‘apprehended’’ taking another child’s pencil. This
was apparently the last straw, and at the request of the classroom teacher, a police
officer was brought into the school to give Cody a stern lecture on the consequences
of stealing. One can only imagine the scene of this young girl gazing up at someone
in a uniform waxing on the merits of good citizenship. Upon hearing of this action,
Cody’s mother decided it was time to reach for outside support, and she sought
neuropsychological intervention.
Test Results
Cody’s mother was referred to neuropsychology from the department of physical

medicine and rehabilitation approximately 6 months following the crash. Her initial
concerns included finding her daughter’s strong points and weaknesses and addres-
sing her behavior. More specifically Cody’s mother wanted to know ‘‘what actions
can be used for punishment.’’ By this question, it was clear that Cody’s mother’s
limits were reached and that she had begun to adopt some of the same views as
the school, which included immediate consequences for negative behaviors.
No positive reinforcement schedule had been adopted at this point. In reality, it is
quite possible that Cody was only rarely engaging in positive, on-task, and appro-
priate behaviors, making rewards and praise difficult to come by, which is often the
case with children who have oppositional and defiant behaviors.
The family arrived at the appointment with school records. A review of these
documents revealed a litany of behavioral consequences and supportive data to
suggest the need for Cody’s placement in the special education classroom.
It appeared that formal psychoeducational testing was initiated but ultimately
discontinued due to variable compliance. This was actually a positive finding in
that the examiner was subsequently free to administer measures without concern for
recent exposure or practice effects. The approach to this evaluation was to imple-
ment a flexible battery of neurocognitive tests, with emphasis on those areas
commonly impacted by closed head injury with maximization of frontal lobe
involvement (e.g., attention, language functions, memory and learning, and aspects
of higher order reasoning or executive functions).
26 J.E. Romain
Cody presented as a sweet, gregarious, bubbly, yet decidedly active and disin-
hibited young girl. She had a charming smile and a glint in her eyes that was visible
beneath the facial disfigurement. A flurry of questions and statements streamed
from her mouth: ‘‘Who are you?’’ ‘‘My name is Cody.’’ ‘‘We stayed in a hotel with a
pool last night.’’ ‘‘That’s a nice shirt.’’ ‘‘Is that new?’’ This latter inquiry, in fact,
turned out to be her most recent perseveration, and she proceeded to ask this
question countless times about anything and everything throughout the morning.
Despite her increased activity level and affinity for distraction and all things
unrelated to testing, rapport was fairly easily established, and focus to task was
maintained with the provision of strong external structure in a one-to-one, relatively
barren testing environment (Table 3.2).
The evaluation found Cody to be functioning within the borderline range of
global cognitive abilities, with somewhat better developed verbal than nonverbal
reasoning. Modest relative weakness was observed in speed of mental processing,
and significant deficit was seen in verbal attention and working memory. The
discrepancy between subtest scores was significant, rendering Cody’s Full Scale
IQ as representative of ‘‘statistical averaging,’’ and although her overall IQ placed
her within the borderline range, it was necessary to view her as having areas of
significant relative strength and weakness, rather than as a child with globally
depressed cognitive abilities. It is further essential in all evaluations of acquired
brain dysfunction, particularly during the acute phase (approximately the first 6
months post‐injury) and post-acute stage (approximately 6–12 months post‐injury)
of recovery that the scores be viewed as a level of current functioning and a baseline
level of ability to track improvement in cognition over time.
Due to time constraints and fatigue, only a screening of academic skills was
completed (Table 3.3). Results revealed broadly average range single-word decod-
ing, spelling, and mathematics skills. Although there was no assessment of fluency

Wechsler Intelligence Scale for
Children – Fourth Edition Scorea Percentile
Perceptual Reasoning Index 84 14th
Working Memory Index 65 1st
Processing Speed Index 78 7th
Full Scale IQ 78 7th
Similarities (11)
Vocabulary (9)
Comprehension (9)
Block Design (7)
Digit Span (5)
Coding (5)
Symbol Search (7)
a
Table 3.3 Academic achievement

Wide Range Achievement Test – Third Revision, Tan Form Score Percentile
Reading 101 53rd
Spelling 95 37th
Arithmetic 94 34th
or more intricate aspects of comprehension and applied reasoning, these results

substantiated the fact that Cody was likely a broadly average range child before the
injury. Notably, reading decoding is a commonly used measure to gauge a level of
premorbid global functioning. Clinicians often find screening of basic math calcula-
tion skills also to be of some utility as children with acquired brain injury frequently
demonstrate gaps for certain computations (e.g., forgetting portions of the multiplica-
tion table or how to solve for fractions). This of course was not operative in Cody’s
case, because she only just had begun to learn the fundamentals of math, but it was
encouraging that she had retained broadly average math skills relative to her grade.
Performance on ancillary neuropsychological measures revealed impaired
sustained attention and impulse control, as well as variable executive functions
(Table 3.4). While sequencing and predicting cause-and-effect relationships on
standardized neuropsychological testing were intact, abstract reasoning and reac-
tive flexibility were impaired. Although somewhat variable, these findings are
reflective of frontal lobe pathology consistent with a traumatic brain injury. Low
average to impaired performance was also appreciated on measures assessing
auditory comprehension and verbal memory functions; however, additional analy-
sis and comparison between tasks suggest that these deficits were more a function of
attention and working memory impairment, rather than language and memory
deficits per se. Memory deficits further appeared to be a consequence of poor
retrieval rather than an inability to encode information, as Cody’s remote recall
of verbal material was solidly within the average range when she was given
multiple-choice questioning.
In summary, Cody presented with deficits in sustained attention and impulse control,
as well as aspects of executive functions, which is fully consistent with a brain injury
and the identified frontal lobe focus. The results from the present evaluation provide a
snapshot of her current condition. On the basis of the recency of her injury, Cody was
still technically in the post-acute stage of recovery. Only during the long-term stage
of recovery (beginning approximately 1 year after the injury) can a clearer picture of
the potential for persistent deficits be fully appreciated.
In this particular case, the neuropsychological data merely quantify, illustrate,
and confirm Cody’s impaired self-regulatory behaviors impacting classroom and
interpersonal functioning. This information was helpful in facilitating the school’s
reconceptualization of Cody’s behaviors as a consequence of her acquired injury,
28 J.E. Romain

NEPSY 80 9th
Visual attention
Conners’ Continuous Performance Test – Second Edition
Omissions [119] 99th
Commissions [36] 10th
Hit RT standard error [87] 99th
Variability [77] 99th
Hit RT ISI change [96] 99th
Hit SE ISI change [66] 96th
Tower of London 97 42nd
Wisconsin Card Sorting Test Discontinued
The Token Test for Children
Part I 101 53rd
Part II 76 5th
Part III 82 12th
Part IV 76 5th
Part V 86 18th
Overall score 85 16th
Grooved Pegboard
Right hand trial 1 91 27th
Left hand trial 1 81 10th
Right hand trial 2 104 61st
Left hand trial 2 94 34th
Beery–Buktenica Developmental Test of Visual-Motor 85 16th
Integration
Wide Range Assessment of Memory and Learning – 2
Story memory
Immediate recall 85 16th
Recognition 75 5th
Verbal learning
Immediate recall 80 9th
Recognition Affirmative
response bias
rather than a function of bad parenting or merely a child behaving poorly. Several
additional recommendations proved helpful and are presented in three categories:
school placement, behavior, and adjunctive support.
School Placement
It was strongly encouraged that Cody receive special education services under the
traumatic brain injury (TBI) categorization. The general rule for children
recovering from TBI is to provide maximum services initially and to taper off as
necessary. This may appear counterintuitive, because the convention in school

often is to provide the ‘‘least restrictive environment.’’ For Cody, a one-to-one
aide would be reasonable, unless she demonstrates that she can work with a degree
of independence and refrain from distracting others or engaging in negative inter-
actions with children in the classroom.
Students with TBI differ from others with disabilities in that they do not
experience well-defined progress and they tend to show significant variability in
their learning profiles. Instead of yearly progress reports and triennial reevaluation,
students with TBI require more frequent evaluation and planning. Initially, the IEP
might be revised every semester, and assessment might be reasonable as frequently
as at 6-month intervals.
Behavior
Cody clearly presented with limited tolerance for frustration, increased irritability,
and an increased level of impulsivity, which, when combined, make it difficult for
her to weigh consequences. Rather, she reacts impulsively, which is fully consistent
with a brain injury. Therefore, it will be important for caregivers and school
personnel to work with Cody to assist her in coping with conflicts to minimize
her frustration. In addition, Cody will likely benefit from a behavior modification
plan at home and in school. Such a program may be organized as a token economy
and may also include patient and family counseling and social skills training. The
primary goal of this type of program is to replace maladaptive behaviors with
positive behaviors that generalize to everyday life and to limit aggression and
negative emotional states.
Any acting-out behavior should be confronted in a nonjudgmental, matter-of-fact
way, pointing out what is appropriate or inappropriate and suggesting an alternative
behavior. Avoid using unanswerable questions, such as ‘‘What were you thinking?’’
Additionally, any behavior program should focus on reducing the antecedent
(preceding occurrence, cause, or event) that elicits the inappropriate behavior and
reducing the probability that an inappropriate behavior (e.g., hitting) will be
reinforced. Examples of proactive intervention strategies include the public posting
of classroom rules and strategically placing the child near the teacher and away
from other students who tend to act out. Further, it will be important to recognize
and reward appropriate behavior immediately after it is demonstrated, which will
promote Cody’s motivation and improve compliance.
Adjunctive Support
During this evaluation, a lengthy discussion ensued about the potential consider-
ation for a psychopharmacological consultation to evaluate the use of medication
to improve attentional skills, decrease perseverative thoughts, and minimize
30 J.E. Romain
disinhibited verbalizations and behaviors. Although the etiology of Cody’s inatten-

tive and disinhibited behaviors is trauma related, symptoms of this type often
effectively can be addressed medically in children with a history of closed head
injury. Cody’s family was encouraged to work with physical medicine and rehabil-
itation, her primary care doctor, or perhaps a psychiatrist, who could provide
medication management, such as a neurostimulant.
It was strongly encouraged that counseling services be initiated through an
outpatient setting to assist Cody in learning self-restraining strategies and in gaining
insight into her impaired functioning, while preserving her self-esteem.
Update
Approximately 1 year from her initial evaluation and after at least two reconstruc-
tive facial surgeries, Cody again came bounding into the office with the same wry
smile and twinkle in her eyes (not to mention the incessant chattering) that has
endeared her to people. Her right eye is permanently nonfunctional, but she remains
medically stable, without evidence of recurring hydrocephalus or seizure. The
perseverations persist, as does the distractibility, although her performance on
formal testing did reveal modest improvements in most areas, with remarkably
average to above average academic skills, suggesting that she is continuing to make
age-appropriate maturational gains. Most importantly, the school appears to have
made modifications to foster classroom growth and limit negative interactions, and
Cody’s self-esteem and sense of self-efficacy appear to remain intact due to the
parent and teacher shift from viewing her as an inherently bad child to one with an
acquired injury. Toward the end of a long day of testing, with Cody still in active
and chatty mode, she spontaneously exclaimed that she was doing a great job with
her newest household chore – feeding, bathing, and generally exercising the
family’s Labrador Retrievers and their first litter of puppies. Perfect.
Individualized education program (IEP) A written educational plan developed by

school personnel, with input from parents and other professionals, for the provision
of formal special education services for those who qualify.
Neurostimulant Traditional stimulant medications such as those used for the man-
agement of ADHD, which have been gaining increasing favor in their use for
improving attention and focus in traumatic brain injury.
Perseveration A failure to inhibit a repeated response or thought. A common

consequence of acquired brain injury due to the frequent involvement of the frontal
lobes, but also seen with diffuse injury.
Ptosis Drooping of a body part, in this case the eyelids; often the result of cranial
nerve injury.
Practice effects The recent prior exposure to a particular test resulting in an
artifactual increase in performance during the subsequent administration.
Seizure A disturbance of electrical activity within the brain, in this case
secondary to TBI, resulting in a variety of presentations, some of which include
altered consciousness and generalized motor manifestations, while others might
manifest as staring, specific motor involvement, or merely strange sensory symp-
toms. Prevalence in the closed head injured population has been estimated to be
about 5%.
Token economy A reinforcement plan where a child earns ‘‘tokens’’ for good
behavior to exchange as currency for a material reward or activity. These tokens
also can be withheld or removed for noncompliance.
References
Bigler, E. D., Clark, E., & Farmer, J. E. (1997). Childhood traumatic brain injury: Diagnosis,
assessment, and intervention. Austin, TX: Pro-Ed.
Carney, J. M., Gerring, J. P., & Rosen, C. M. (1992). Head trauma: Strategies for educational
reintegration. San Diego, CA: Singular Pub. Group.
Savage, R. C., & Wolcott, G. F. (1994). Educational dimensions of acquired brain injury. Austin,
TX: Pro-Ed.
Schoenbrodt, L. (2001). Children with traumatic brain injury: A parent’s guide. Bethesda, MD:
Woodbine House.
Senelick, R. C., & Dougherty, K. (2001). Living with brain injury: A guide for families (Second
ed.). Birmingham, AL: HealthSouth.
Chapter 4
A Slippery Descent: Adolescent Traumatic
Brain Injury
Peter L. Stavinoha
With prom approaching in the spring, Judy’s high school planned several fundrai-
sers to cover the cost of decorations. This included an annual fall carnival that
typically attracted several hundred schoolchildren from small towns across several
rural counties. Judy, a beautiful 15-year-old sophomore, was working atop the
inflatable slide, where she was in charge of making sure that children safely made
the transition from the top of the steps to the slippery descent. Judy gladly paid her
dues by working the carnival, because she knew that her junior and senior proms
would be supported by the efforts of underclassmen similar to herself.
As Judy grew a bit weary of transferring one grade schooler after another from
steps to slide, a breeze began to pick up. Hardly anyone paid much attention to the
dark gray-blue line of clouds coming from the north, and those who did welcomed
the cool air accompanying the cold front that was supposed to pass through that
afternoon. However, as often happens on the plains, there was no warning that the
front would bring with it a wall of wind at least 40 miles per hour strong.
Run largely by amateurs, the carnival was not adequately prepared for this sudden
change in weather. Feeling the cool breeze begin to pick up, Judy stood and arched
her back to take advantage of a brief moment of respite between sliders. She had a
great view of the rest of the carnival from her perch at least 25 ft. in the air. At that
moment, the full force of the cold front hit, and the wind easily broke the slide from its
moorings. Bystanders watched in horror as Judy fell backwards as the slide flipped,
and she was subsequently thrown an estimated 150 ft. through the air. Judy landed on
an awning attached to a trailer parked nearby, and she then bounced to the ground.
Moments later, several adults surrounded Judy as she lay unconscious on the
ground. Emergency medical services (EMS) were on the way, and the adults felt
helpless as they stood and watched Judy’s nearly lifeless body. After just a few
minutes, experienced EMS staff tended to Judy, quickly stabilizing her and racing
to the hospital. Within 15 minutes of the fall, Judy began to regain consciousness
and tried to speak to the EMS attendant riding with her in the back of the ambulance.
Groaning in pain, Judy was agitated and made little sense when she spoke.
The EMS technician made sure that Judy remained stable during the trip to the

34 P.L. Stavinoha
hospital, but he did not react to Judy’s agitation or confused speech because he had
seen this before as a result of a head injury.
Cranial computerized tomography (CT) scans completed on the day of the fall
revealed a small hemorrhage in the medial aspect of the right frontal lobe near the
midline. Judy’s brain was bleeding in the middle part of her right frontal lobe. A
subdural hematoma was also observed and monitored over the left temporal lobe,
and there was evidence of a small hemorrhage in the occipital horn of the right
lateral ventricle. In addition, Judy experienced three broken ribs on her right side, a
cracked pelvis, partial collapse of her right lung, and multiple breaks in her left arm.
Judy remained in intensive care for 4 days. During the first 3 days following the fall,
Judy remained disoriented and generally did not speak. When she did begin
speaking, she was abrupt, curt, extremely demanding, and often did not make sense.
Over the course of her 3-week hospital stay, Judy’s parents watched their
daughter go from practically mute to unusually talkative. The doctors and the
hospital staff had warned Judy’s parents that she may have some cognitive and
behavioral difficulties as a result of her brain injury and that she may behave in a
manner unfamiliar to them. Indeed, Judy’s parents were struck by the significant
personality and behavior changes that they observed in their typically straight-laced
daughter. At times Judy was irritable and agitated, while at other times she was loud,
obnoxious, and lacking in personal modesty. Her speech had become somewhat more
fluent as time went by, but it was often peppered with risqué ideas and curse words.
Judy’s parents found themselves shielding their 12-year-old daughter from Judy,
because they found it very difficult to explain this behavior to their younger daughter.
Judy was fortunate not to require surgery for any of her injuries, and she seemed
to be making good physical recovery by the end of her hospital stay. No inpatient or
day rehabilitation facilities were within 200 miles of their rural home, so Judy’s
parents were handed the reins for her care as she continued her recovery at home.
Practically from the time of Judy’s initial admission to the hospital, her primary
care physician, who was also a friend of the family, had kept a close eye on her
recovery and her care. Although closed head injury had not been a common malady
that he had faced in his practice, Judy’s doctor knew that she may be in for a long
and possibly incomplete recovery.
Two weeks after coming home, Judy was adamant that she return to school, and
her parents were unsure how to handle this. They had talked to school staff who had
told them to give Judy time to heal before worrying about a transition back to
school. Judy became more insistent that she return to school, and her parents were
finding it increasingly difficult to distract her from this idea. They called her doctor
for advice, and he suggested a consultation with a neuropsychologist. The closest
neuropsychology services were approximately 300 miles away, but Judy’s parents
were willing to make the trip to ensure that they were doing all they could to care
for their daughter and promote her full recovery.
During the initial interview with the neuropsychologist, Judy’s parents described
her significant behavioral changes. In addition to the personality change character-
ized by a much more demanding and irritable tone, Judy seemed unconcerned with
modesty. Her parents described her as having difficulty with memory and using odd
4 A Slippery Descent: Adolescent Traumatic Brain Injury 35
speech patterns at times. They also felt that she had trouble understanding what
people said to her, though they were not sure whether this was disorientation or
truly a problem with comprehension. Judy continued to have trouble putting
thoughts into words, and her parents described her as frustrated and irritable
when she did not get what she wanted.
At the time of the evaluation, Judy continued to experience difficulty with frequent
headaches, dizziness, and occasional nausea. She was hypersensitive to noises and
could not stay awake for more than 5 or 6 hours at a time. In fact, her parents said that
Judy had been sleeping about 15 hours per day since coming home from the hospital.
Judy’s parents told the neuropsychologist that they felt they needed help with
‘‘everything.’’ They did not know how to respond to, or understand, their daughter’s
behavior, and they feared that these personality and cognitive changes would be
permanent. They knew that she had to go back to school, but they could not see how
she possibly could attend in her current condition.
Test Results
Judy’s parents were seeking help across a number of dimensions. They wanted to
understand the changes they had seen in their daughter, and they wanted to know
whether these changes would be permanent. They wanted to know when and how to
send Judy back to school, particularly given that she did not seem capable of staying
awake for an entire school day. Judy’s parents expressed over and over, ‘‘We just
want to know how to help our daughter.’’ Given the broad nature of the issues that
needed to be addressed and the somewhat diffuse nature of Judy’s documented
brain injury, evaluation procedures that could provide information about a wide
range of neurocognitive domains were selected.
Judy’s parents wisely traveled on the day before the evaluation so that Judy
would have plenty of time to rest before undergoing testing. Judy was very friendly
and sociable upon the initial meeting. She talked frequently throughout the day, and
at times she spoke quickly and mixed her words together, making her speech output
difficult to understand. However, when prompted, Judy would slow down and
repeat what she had said, and this output was usually of improved quality. Although
Judy was very pleasant during direct interaction with the examiner, her parents
reported that during breaks she was irritable, oppositional, and even angry, fre-
quently commenting that she did not want to return to testing. During testing, Judy
was cooperative and appeared to put forth good effort. On more difficult tasks, she
was not always able to sustain a high level of effort for very long, and she fatigued
very easily over the course of the evaluation. Later, her parents reported that Judy
slept almost 14 hours straight after she had completed the evaluation. Results of
neuropsychological testing are summarized in Tables 4.1–4.3.
Measurement of Judy’s overall intelligence only 7 weeks after her brain injury
indicated average ability across both verbal and nonverbal domains. However,
Judy’s subtest performances suggested increasing verbal difficulty as expressive
language demands increased. Auditory working memory was in the low average
36 P.L. Stavinoha

Wechsler Intelligence Scale for Children, Third Edition Scorea Percentile
Verbal IQ 92 30th
Performance IQ 90 25th
Perceptual Organization Index 91 27th
Freedom from Distractibility Index 87 19th
Information (12)
Similarities (8)
Arithmetic (7)
Vocabulary (10)
Comprehension (6)
(Digit Span) (8)
Picture Completion (11)
Coding (8)
Picture Arrangement (10)
Block Design (8)
Object Assembly (5)
(Symbol Search) (8)
a

Woodcock Johnson Psychoeducational Score Percentile
Battery – Revised: Tests of Achievement
Letter-Word Identification 111 77th
Calculation 103 58th
range, and Judy’s overall nonverbal information processing composite fell in the
low end of the average range. Again, there was variability among individual
subtests such that Judy experienced increasing difficulty as time demands increased
and as the structure of the task decreased. Simple processing speed was in the low
end of the average range, though qualitative observation suggested that Judy
worked slowly and had difficulty persisting on longer tasks.
Judy’s capacity to take in, store, and later recall newly presented verbal infor-
mation in the form of a word list that she was to learn over repeated trials was
significantly below average for overall learning. She also was noted to make a
number of intrusion errors in that she had a tendency to say words that were not
actually on the list more often than most individuals her age, and she had difficulty
with the longer-term retention of this verbal information. Judy also experienced
difficulty with memory for verbal information in the form of stories. Nonverbal,
visual-spatial memory was also below average, and her aggregate memory perfor-
mance suggested significant difficulty across memory modalities.
Performance on tasks tapping language functions suggested difficulty with
aspects of both receptive and expressive language functioning. Judy had difficulty

Tests Raw Score
score
Clinical Evaluation of Language Fundamentals
Concepts and directions (6)
Recalling sentences (8)
Controlled Oral Word Association Test 81
Boston Naming Test
Total 31/60
Correct with phonemic cue 12/29
California Verbal Learning Test – Children’s Version
List A total trials 1–5 [31]
List A trial 1 free recall {1.0}
List B free recall {1.0}
List A short-delay free recall {2.0}
List A short-delay cued recall {1.5}
List A long-delay free recall {2.0}
List A long-delay cued recall {1.5}
Recognition {1.0}
Children’s Memory Scale
Dot locations
Learning (7)
Total score (6)
Long delay (5)
Stories
Immediate (6)
Delayed (5)
Delayed recognition (8)
Faces
Immediate (6)
Delayed (5)
Wisconsin Card Sorting Test
Total errors 82
Perseverative responses 74
Perseverative errors 71
Nonperseverative errors 87
Trailmaking Test
Part A 86
Part B 75
Beery–Buktenica Developmental Test of Visual-Motor 96
Integration
Benton Judgment of Line Orientation Test {0.33}
38 P.L. Stavinoha
with word retrieval and naming, and she also exhibited problems with oral language
comprehension, particularly as the complexity of the information given to her
increased. Her basic visual perceptual functions were intact, and she also performed
adequately on a task tapping visual-motor integration. Problem-solving and concept
formation were difficult for Judy, because she had trouble self-monitoring her
performance, flexibly developing and testing new problem-solving strategies, and
altering her own solving approach based on direct feedback. She also was observed
to have significant difficulty on a task of divided attention, which required her to
simultaneously shift back and forth between familiar sequences.
During an interview with Judy to gather information about her emotional
adjustment and current coping, she reported that she believed her attitude has
changed significantly since her fall. Specifically, she said that she now believes
that life is short and needs to be lived to its fullest. Judy’s interview responses
suggested that she did not have a grasp of the gravity of her fall, and in fact she
tended to deny any injury aside from obvious physical injuries (e.g., broken arm,
broken ribs). She felt that she was still the same person and was still as capable as
ever. She could not understand why her parents were ‘‘smothering’’ her, but at other
times during the interview she acknowledged feeling frightened by all of the
significant and sudden changes in her life.
Judy exhibited a diffuse pattern of neurocognitive deficits that are generally con-
gruent both with the experience of closed head injury in general as well as with the
specific areas of brain damage that she experienced. Ongoing difficulties with low
stamina, fatigue, and somnolence are not unusual in the early phase of recovery
following closed head injury. Judy also continued to experience short episodes of
disorientation and occasional dizziness, along with persisting headaches. Again,
these symptoms are not unusual during the initial weeks and months of recovery
from brain injury, and these are all conditions that need to be considered when
making appropriate rehabilitation and educational plans.
Cognitively, Judy appeared to exhibit a general suppression of overall IQ
performance. Measurement of IQ is not always warranted during the initial months
of recovery because it is often not particularly stable, but it was important to have
an overall measure of ability for Judy both for later comparison to document
recovery and for educational planning. Judy exhibited significant difficulty with
memory functions as well as with aspects of both expressive and receptive lan-
guage, likely related to diffuse brain injury and specific injury to the left temporal
lobe. Deficits in executive functions including problem-solving, self-monitoring,
and self-regulation of behavior likely stemmed from Judy’s right frontal lobe
damage observed on initial CT scans. In addition, Judy intermittently exhibited
difficulties with attention, concentration, cognitive speed, and efficiency, neuro-
cognitive effects that are relatively common following traumatic brain injury.
Emotional and personality issues were prominent and particularly troubling for
Judy’s family. Their once good-natured and pleasant girl had become an irritable,
impulsive, and even obnoxious teenager in the course of a single afternoon at a
carnival. Personality changes also are not unusual following damage to the frontal
lobe, and on the surface Judy gave the impression that she lacked much insight into
her functional deficits. However, in talking to Judy at length, she seemed to vacillate
between wanting to be taken care of and needing to prove to herself and others that
she was still the successful and independent young woman that she had always been.
During the feedback conference held with Judy’s parents, the discussion began
with the rapid trend of Judy’s recovery since the time of her fall. Judy’s parents
described her improvement as dramatic during the first several weeks and somewhat
less rapid currently, though they still felt she was making noticeable improvements
from one day to the next. Judy’s parents were reassured to learn that she was still
relatively early in recovery from her brain injury and should continue to exhibit
noticeable improvements in the weeks and months to come, even though there was
still a good chance that Judy would exhibit some long-term effects of her brain injury.
Because there were no rehabilitation facilities available to the family, it was
determined that Judy would likely best be served by returning to school, where she
would have access to structured activities that could help promote recovery of
function. Additionally, returning to school was encouraged to help Judy get back
into a structured daily routine. From a physical perspective, it seemed clear that
Judy would not have the stamina to return to school full-time. Therefore, a
transition plan was constructed that allowed Judy to attend school only part-time
at first, with an eventual full-time return as the final goal. Specifically, it was
determined that initially Judy would attend school for only 2 hours per day for
several days, and during this time she would not be expected to produce any
academic work. The priority was physical attendance at school to build her stamina,
not educational performance. A graduated schedule was put into place by which
Judy would eventually return to school full-time within several weeks, though
academic demands were to increase at a much slower rate, based solely upon
Judy’s demonstration of her capacity to manage these demands.
Additionally, academic work that had accrued since the time of Judy’s fall was
to be set aside for completion at a later time if necessary. Some students who have
missed a great deal of work become almost obsessed with completing that work,
seemingly as a demonstration to themselves and others that they are not experien-
cing any aftereffects of their brain injury. Although it is admirable that a student
would be so interested in completing missed work, this can be a huge energy drain
on the student during recovery to the point of interfering with longer term reinte-
gration and adjustment. In Judy’s case, she was told that the work would be waiting
for her the following summer, and she would have ample opportunity to complete
fully any outstanding work prior to starting her junior year in high school.
To allow for such flexible scheduling and alteration of curriculum expectations,
Judy was formally identified by the school’s multidisciplinary special education
team as eligible for services under the handicapping condition of Traumatic Brain
Injury (TBI). Speech and language evaluation and monitoring were recommended
40 P.L. Stavinoha
to address lingering language issues. Judy’s school psychologist offered to provide

case management, teacher consultation, and oversight to ensure that Judy did not
reach excessive frustration or fatigue during her lengthy transition back to school
and recovery from brain injury. Fortunately for Judy, the school psychologist
seemed well aware of the balance that needed to be struck between having Judy
participate in normal, everyday school activities while at the same time protecting
her from feeling overwhelmed and incompetent.
A number of modifications and accommodations were brainstormed to address
specific difficulties with memory, attention, processing speed, and organizational
capacity. These are summarized in Table 4.4.
It is not unusual for an adolescent to experience a strong psychological reaction
to a potentially life-threatening incident. For Judy, this was further complicated by
the fact that she did not entirely remember the fall and instead had to trust the stories
others had told her about what happened. As with many adolescents, during the
course of her recovery Judy vacillated between yearning for full independence
while also wanting her parents to take care of her. Additionally, Judy’s parents were
struggling with their reaction to nearly losing their daughter and with changes in
communication patterns between themselves and Judy resulting from the personal-
ity changes secondary to her traumatic brain injury. Although it was anticipated that
some of these personality changes would resolve to an extent given time, it was
recommended that they work with a psychotherapist on these issues in the interim
as Judy continued her recovery. Resources in the family’s geographic region were
sparse, so a therapist was identified who would spend some time with Judy
individually as well as with Judy and her parents together.
Finally, given the fluid nature of recovery from traumatic brain injury, it was
anticipated that Judy would experience significant recovery of function over the
next several months. Neuropsychological consultation was recommended as a
checkup at 2-month intervals for the next 6 months, with a full evaluation scheduled
approximately 12 months after injury. The 12-month interval would allow the bulk
of significant recovery to occur, and this would permit greater clarity in the
identification and planning for any neurocognitive deficits that would potentially
be long-standing.
Table 4.4 Classroom strategies

Reduce or eliminate time demands on assignments and tests
Begin with smaller assignment sizes/demands and gradually return to normal academic demands
as Judy demonstrates mastery
Present new information in a structured and organized manner, multiple times, and in multiple
modalities when possible
Provide opportunities for Judy to rest during her school day
Help Judy prioritize and organize her assignments so that these are broken into discrete parts that
she can complete one at a time in a sequential manner
Help Judy establish realistic assignment completion goals, and help her track progress toward
these goals
Provide prompts and cues as needed to ensure that Judy is understanding directions and what is
expected for specific assignments
Teacher notes should be provided to Judy so that she is not expected to take notes in lecture
classes, a task that likely would exceed her working memory and processing speed capacity
Update
Judy was seen for evaluation once again approximately 12 months after her closed
head injury. Her parents reported that she was bubbly and active and seemed to be
‘‘her old self.’’ She continued to sleep longer and more soundly than she had before
the fall, and occasionally she would exhibit mild disorientation upon awakening.
Judy progressed well at school during that year, and by the end of her sophomore
year, she was back to school full-time, taking a full academic load. She continued to
experience difficulty with more academically challenging activities, and these
continued to cause her some frustration. However, with ongoing support, she was
managing her assignments and seemed to be coping adequately.
Updated evaluation indicated a 16-point increase in IQ and high average perfor-
mance across academic achievement tasks. Judy continued to exhibit mild difficul-
ties with working memory and retention for new information. She also continued to
exhibit a slight weakness with information processing speed that became much
more prominent as the level of task difficulty increased. Psychologically, Judy
seemed to have assimilated her difficult experience and long, effortful recovery
reasonably well, and she seemed to be coping positively with new life challenges
with ongoing support and help from her family, educators, and therapist.
Hemorrhage Bleeding due to ruptured blood vessels.

Somnolence A state of being drowsy or sleepy.
Subdural hematoma A pooling of blood beneath the dura, one of the protective
coverings for the brain under the skull. The blood collects and pools such that it
expands like a balloon filling with air, and it causes pressure on the brain.
References
Semrud-Clikeman, M. (2001). Traumatic brain injury in children and adolescents: Assessment

and intervention. New York: The Guilford Press.
Yeates, K.O. (2000). Closed head injury. In K.O. Yeates, M.D. Ris, & H.G. Taylor (Eds.),
Pediatric neuropsychology: Research, theory, and practice (pp. 92–116). New York: The
Guilford Press.
42 P.L. Stavinoha
Brain Injury Association, Inc., www.biausa.org. Promotes awareness, understanding, and preven-
tion of brain injury and provides education, advocacy, and community support services for
those affected by brain injury. 1776 Massachusetts Ave., NW, Washington, DC 20036‐1904.
Family Helpline 1-800-444-6443.
Brain Injury Information Network, www.tbinet.org. An Internet-based network of electronic
mailing lists, information, and support groups for those affected by brain injury.
Brain Injury Society, www.bisociety.org, (718) 645–4401. An organization that works with
clients, families and caregivers to identify strategies and techniques to improve outcome and
recovery from any type of brain injury.
Traumatic Brain Injury Survival Guide, www.tbiguide.com. An online publication that provides
easy-to-understand language for survivors and families coping with a traumatic brain injury.
Chapter 5
Steamrolled: Sports-Related Concussions
Michael Sharland and Thomas A. Hammeke
Stephen played inside linebacker for his high school junior varsity football team.
His teammates called him the Steamroller because he knocked other players flat.
During the final scrimmage prior to the regular season, Stephen sustained a con-
cussion during play. He was not rendered unconscious but was immediately dizzy
and later had nausea. He was removed from play and allowed only limited practice
for the week. His symptoms resolved, and he returned to play in early September,
2 weeks following his injury. He did not have a clear concussion in this return game
but did strike his head on the ground on several occasions while diving for the ball.
His symptoms returned and he felt markedly fatigued; consequently, he was again
removed from play. His parents were concerned because this was not Stephen’s first
concussion, nor even his second. In fact, according to their count, Stephen had
sustained four concussions since childhood (Table 5.1).
Stephen’s primary care physician saw him for follow-up care and released him
to return to play in mid-September. But his parents elected to withhold him from
play until they obtained a second opinion from a pediatric neurologist. The neurol-
ogist saw Stephen in late October, 8 weeks following his injury, and at that time
Stephen’s parents noted that his grades had suffered. Magnetic resonance imaging
(MRI) of the brain was ordered and interpreted as normal. Additionally, Stephen’s
neurological exam was normal. The neurologist referred Stephen to the Mild
traumatic brain injury (TBI) Clinic at a regional academic medical center,
where Stephen was seen in November.
The Mild TBI Clinic is staffed by a physiatrist and a neuropsychologist. Its
purpose is to evaluate and assess individuals shortly after sustaining a mild brain
injury with the goal of early intervention preventing longer-lasting complications.
For example, the Mild TBI Clinic doctors will make recommendations about readi-
ness to return to work, treat mood disturbances associated with TBI, and provide
education and follow-up monitoring of common TBI-related sequelae. The neuro-
psychological battery in the Mild TBI Clinic is quite brief, taking approximately
20 min to administer and including measures of memory, attention, processing speed,
and executive functioning, domains which have shown to be sensitive to mild TBI.
Stephen lived with his mother and father and was attending tenth grade. He had
a cumulative grade point average of 2.75 with a 2.90 grade point average over

44 M. Sharland, T.A. Hammeke
Table 5.1 Stephen’s concussion history

Age Nature of concussion Loss of Symptoms
(in years) consciousness following
concussion
6 Collided with another Yes, briefly (less Headache, sleepy
child while running than 1 min)
around the corner of
his house
12 Accidentally hit in the No Dizziness,
head while playing headaches
baseball
14 Collision during Yes, briefly Brief amnesia for
practice for (reportedly events
freshman football 5–10 s) following,
resulting in helmet- headaches,
to-helmet contact sensitivity to
with another player noise
15 Hit head while playing No Dizzy, nauseated,
in scrimmage for easily fatigued,
junior varsity headaches
football
the past semester. He averaged mainly Bs and Cs and struggled with Spanish and
Geometry. These grades were slightly lower than his performances in ninth grade.
His performances on standardized academic testing were consistently in the aver-
age range. A more thorough interview of Stephen’s parents revealed mild concerns
regarding inattention since childhood; however, he was never diagnosed with an
attentional disorder. Developmentally, he was born 2 weeks premature and deliv-
ered by C-section. He reached all developmental milestones within normal limits.
He never received special education services or repeated a grade. He was active in
various athletics. Past medical history was significant for Von Willebrand disease,
resulting in reduced blood-clotting ability, and the aforementioned four concus-
sions. Family medical history was significant for dementia/memory loss in
a maternal great-grandparent and great-uncle in late life. It was not clear whether
this was related to vascular disease or a dementing process such as Alzheimer’s
disease. Past psychiatric history was unremarkable, and Stephen’s mood was
reported as normal. He was not currently on any medication.
TBI can be divided roughly into three levels of severity. Individuals who sustain
a mild TBI typically have little or no loss of consciousness, brief or no loss of
memory for events around the time of the injury, and are alert and oriented on
arrival to the emergency department. People who sustain moderate and severe
traumatic brain injuries will have loss of consciousness, posttraumatic amnesia,
visible damage to the brain on neuroimaging, and be less lucid and alert immedi-
ately after the injury. Although strict delineations between injury severity are not
always clear, medical professionals typically use an individual’s performance on
the Glasgow Coma Scale, a gross measure of level of arousal and lucidity, on arrival
to the emergency department as a means of estimating injury severity. Scores that
range from 3 to 8 on this scale are identified as severe TBI, 9 to 12 as moderate TBI,
and 13 to 15 as mild TBI.
5 Steamrolled: Sports-Related Concussions 45
Test Results
On presentation to the Mild TBI Clinic, Stephen stated that his physical symptoms
had fully resolved; however, he did note difficulty sustaining his focus in the
classroom and stated that he had to work harder mentally to do his homework.
He reported that his mental stamina had not fully recovered. He was not aware of
any specific problems with memory, speech, or reading. Taste and smell were said
to be normal and his appetite had been good. Sleep had been good and perhaps
increased over his normal amount. He was not troubled by nightmares. No signifi-
cant change in mood or temperament was reported by Stephen or his parents.
Stephen was evaluated by both a physiatrist and a neuropsychologist. His physical
exam was unremarkable. He was administered the short screening battery of
neuropsychological measures. Mild deficits were noted on a wordlist learning
task and on measures of verbal working memory and information processing
speed. These skill weaknesses, although mild, were consistent with his complaint
of difficulty in sustaining concentrated focus in his class work. Additionally, the
deficits implied that he must work harder mentally to complete routine tasks,
perhaps accounting for his complaint of diminished mental stamina.
Stephen’s test performance (Table 5.2) raised concerns about persistent effects
from his concussion or, possibly, cumulative effects from the four concussions he had
incurred. Stephen was advised to avoid contact sports at the time because repeated
concussions without full recovery have shown cumulative effects. A repeat examina-
tion with a more expanded set of tests was suggested for the following spring to better
gauge recovery versus persistent deficits. Additionally, the estimated hazards of
contact sports would be reconsidered and a recommendation about playing football
provided. Stephen was allowed to continue competing in swimming and track.
Stephen returned for a more thorough neuropsychological evaluation and assess-
ment in February, 5 months following his original injury. He arrived for his
appointment accompanied by his mother and father. He was an alert, well-dressed,
and pleasant young man. On interview, Stephen denied any cognitive deficits.
He spoke fluently, with no abnormalities in the volume, rate, or tone of his voice.
Table 5.2 Initial screening: Other cognitive functions

Tests Scorea Percentile
Hopkins Verbal Learning Test
Total recall 5th–16th
Delay 5th
Recognition 16th–25th
Wechsler Adult Intelligence Scale – Third Edition
Digit span 90 25th
Symbol digit 85 16th
Animal Naming 84 14th
Trailmaking Test
Part A 99 47th
Part B 114 82nd
a
His ability to understand complex instructions and conversations appeared normal.

His thinking ability was clear and to the point. His emotional expression was
appropriate, and he was able to appreciate and use humor. He did not exhibit any
behaviors that would raise concern for a thought disorder. His ability to walk was
normal, and his insight and judgment appeared age appropriate.
Neither he nor his parents reported any problems with his memory, attention,
judgment, speech, or other cognitive areas. Still, his father stated that Stephen had
difficulty motivating himself to complete homework assignments and try his best in
difficult courses. His father reported that these problems had partially remitted in
the past month. Stephen stated that his energy level had improved and that he had
not experienced any headaches recently. The only exception to this was a headache
that occurred when shaking his head during a dancing exercise a few weeks earlier.
His parents also expressed their opinion that he had fully recovered. They brought
Stephen’s medical and academic records for review.
Stephen was administered a more comprehensive battery of neuropsychological
measures than during his visit to the Mild TBI Clinic. While his performance from
the Mild TBI Clinic acted as a screening for potential problems, his current
neuropsychological assessment was designed to more fully explore his pattern of
strengths and weaknesses. The battery consisted of tests of verbal reasoning, spatial
reasoning, verbal and nonverbal memory, verbal fluency, mental flexibility, con-
cept formation, sustained attention and distractibility, and depression. In general,
Stephen performed in the average to above average range in almost all cognitive
domains. He worked hard on difficult tasks, did not give up easily when faced with
challenges, and did well on tests specifically designed to detect poor effort. As such,
Stephen’s performance was considered a reliable and valid representation of his
current neuropsychological functioning.
On a wordlist learning task, he showed a mildly slow learning curve (2nd
percentile) with delayed recall being mildly below expectation (5th percentile). A
measure of recognition memory was also mildly below expectation (16th percen-
tile). In contrast, Stephen exhibited good immediate and delayed memory for
orally presented stories and visually presented figures, suggesting good memory
functioning in general. Measures of attention, span memory, and category fluency
were below average, with a performance profile that suggested attentional deficits.
On a brief depression screening measure, Stephen did not endorse items reflective
of depression. Compared to his prior screen, his performance was essentially
unchanged, except for improved processing speed and mental flexibility on a visual
sequencing task (Tables 5.3–5.5).
Stephen’s cognitive profile revealed persistent subtle weaknesses in attention and

span memory. His performance was also weak on an effortful memory task
(learning a word list); however, his pattern of performance on this task was more

Wechsler Adult Intelligence Scale – Third Edition Score Percentile
Similarities 110 75th
Information 110 75th
Block Design 125 95th
Digit Span 90 25th

Wide Range Achievement Test – Fourth Edition Score Percentile
Word Reading 103 58th
Spelling 106 66th
Table 5.5 Second testing session: Other cognitive functions

Wechsler Memory Scale – Third Edition
Logical memory
I 100 50th
II 105 63rd
Recognition 72nd
Visual reproduction
I 115 84th
II 110 75th
Recognition 100 50th
Hopkins Verbal Learning Test
Total recall 2nd
Delayed recall 5th
Discrimination 16th
Symbol Digit Modalities Test
Written 85 16th
Oral 83 13th
Paced Auditory Serial Addition Test
I 88 21st
II 90 25th
Gordon Diagnostic System
Vigilance task 50th
Distractibility 50th
Controlled Oral Word Association Test 95 37th
Animal Naming 88 21st
Trailmaking Test
Part A 111 77th
Part B 133 99th
Categories >16th
Perseverative responses 127 96th
Loss of set >16th
Errors 120 91st
reflective of attentional weakness. He showed little or no change on the tasks he had

completed in November when he was seen through the Mild TBI Clinic. Thus, his
neuropsychological performance was more likely reflective of his baseline cogni-
tive functioning. The pattern of performance was consistent with subtle longstand-
ing attentional difficulties reported by his parents, but they were not severe enough
to warrant a clinical diagnosis of an attention deficit disorder.
In this case, it was very important to compare Stephen’s neuropsychological
performance across time, examine his previous academic history, and obtain a
thorough interview with his parents. Subtle attentional difficulties can appear very
similar to the acute effects of a mild TBI. However, his pattern of performance did
not change during the interval between testing sessions. If the effects were truly due
to his most recent concussion, one would expect some improvement on measures.
It was also possible that his neuropsychological performance reflects the cumu-
lative effects of multiple concussions versus attentional problems. In this instance,
the information provided by his parents and academic records were helpful in
differentiation. If Stephen’s current neuropsychological performance were truly
due to the cumulative effects of concussion, one would expect to see a step-wise
decline in his academic and cognitive abilities with each successive concussion.
Instead, Stephen’s standardized academic testing suggested a relative weakness in
reading and verbal cognitive abilities dating back to the second grade. Additionally,
his parents stated that he had had symptoms of inattention since childhood. Hence,
his history was inconsistent with the cumulative effects of concussion. In addition,
all of Stephen’s concussions were generally mild and spaced apart by years. This
makes any cumulative effects of concussion much less likely, because severity and
temporal clustering best predicts cumulative cognitive effects of concussion.
These conclusions were shared with Stephen and his parents, including the
opinion that he had made a good recovery from his concussion. It appeared Stephen
was safe to return to all athletics, should he choose. However, he was cautioned to
minimize further risk of concussion. It was also recommended that he return for a
repeat neuropsychological evaluation should he sustain an additional concussion.
His parents decided that he should not participate in contact sports at this time.
Stephen accepted his parents’ decision and focused on participating in other sports
such as baseball, soccer, swimming, and track. Although the current test findings
and conclusions did not necessitate this decision, the decision was nonetheless the
safest course of action.
Concussion A mild traumatic brain injury characterized by a transient alteration in

mental functioning that is often associated with at least a brief loss of consciousness
or brief interval of posttraumatic amnesia.
Posttraumatic amnesia A period of anterograde amnesia in which new memories

cannot be consistently made and recalled following recovery of consciousness in
head injury or other neurological trauma.
Traumatic brain injury Brain dysfunction caused by an external mechanical force
such as a blow to the head, concussive forces, acceleration–deceleration, or projec-
tile missile.
Von Willebrand disease The most common inherited bleeding disorder. It results
from a lack of Von Willebrand factor, which helps blood clot. People with this
disorder can exhibit prolonged bleeding after an injury.
References
Barr, W. B., & McCrea, M. (2001). Sensitivity and specificity of standardized neurocognitive
testing immediately following sports concussion. Journal of the International Neuropsycho-
logical Society: JINS, 7(6), 693–702.
Echemendı́a, R. J. (2006). Sports neuropsychology: Assessment and management of traumatic
brain injury. New York: Guilford Press.
McKeever, C. K., & Schatz, P. (2003). Current issues in the identification, assessment, and
management of concussions in sports-related injuries. Applied Neuropsychology, 10(1), 4–11.
Centers for Disease Control and Prevention National Center for Injury Prevention and Control.
TBI – traumatic brain injury home page, http://www.cdc.gov/ncipc/tbi/TBI.htm
United States Department of Health and Human Services Centers for Disease Control and Pre-
vention. Heads up: Concussion in high school sports, http://www.cdc.gov/ncipc/tbi/Coaches_
Tool_Kit.htm
Chapter 6
Bad Signs: Sickle-Cell Disease and Stroke
Kimberly Rennie Weissgerber and Amanda Epping
Johnny was a delightful little boy who was born with sickle-cell disease, an
inherited genetic disorder that affects hemoglobin, a protein in the red blood cells
responsible for transporting oxygen. Normal red blood cells are soft and round. In
sickle-cell disease, the red blood cells are hard and sickle in shape. Consequently,
they are likely to get stuck within blood vessels, causing severe pain and other
medical complications. Specifically, sickle-cell disease is associated with increased
incidence of vascular occlusions (pain crisis), cerebrovascular occlusions (stroke),
infections, pulmonary difficulties, and organ damage. Some individuals with sickle-
cell disease experience few complications, while others experience many.
Unfortunately, for Johnny and his family, he experienced many sickle-cell-
related complications. Johnny spent much of his 10 years of life in and out of
hospitals. During his first year of life, he experienced a condition called dactylitis,
the swelling of the fingers and toes. Many pediatric hematologists (doctors who
work with children who have blood diseases like sickle-cell disease) consider
dactylitis to be a ‘‘bad’’ sign (i.e., individuals who experience dactylitis in their
first year of life are at higher risk for more severe complications of the disease than
those who do not). Johnny also experienced a condition called acute chest syn-
drome (a new abnormal finding on a chest X ray and associated with a low oxygen
level), a severe complication of sickle-cell disease that may increase the risk of
stroke. If sickle-cell disease was not enough, Johnny also suffered from asthma,
something not uncommon in children and adolescents with sickle-cell disease.
Despite his illnesses, Johnny and his family maintained a positive outlook on
life. They were all quite close and got along well. Both his mother and his siblings
were quite supportive of him.
Aside from his sickle-cell disease and asthma, Johnny was a relatively healthy
little boy. However, his mother did have some concerns about Johnny’s develop-
ment. Johnny had some trouble learning to walk, and although he began speaking at
a developmentally appropriate age, he had persistent difficulty pronouncing words
correctly. Although he was doing well academically and did not require any special
services at school, his mother remained concerned about the impact of Johnny’s
sickle-cell disease on his overall development. Thus, his mother brought Johnny in
for an evaluation.

52 K.R. Weissgerber, A. Epping
Approximately 2 years after being seen for his initial evaluation, at the age of 10
years, Johnny had a brain magnetic resonance imaging (MRI) test that confirmed
the presence of a focal silent ischemic infarct (defined as the presence of an
abnormal imaging study of the brain with a normal neurological exam and no
prior history of any physical findings) in the prefrontal cortex, with greater promi-
nence on the left side of his brain. His mother also reported that Johnny was not
doing as well academically as he had in the past. His grades decreased from As and
Bs to Cs and Ds, and Johnny was going to be repeating the fourth grade because he
had failed a school district assessment. New concerns were also noted about
Johnny’s behavior at school. Results of Johnny’s initial and follow-up evaluations
are presented below.
Test Results
Initial Evaluation
At the time of his initial evaluation, Johnny was almost 8-years old. As the testing
session began, he was somewhat shy but he eventually warmed up and became
quite talkative with the examiner. Johnny seemed to enjoy the testing and laughed
and smiled with the examiner throughout the session. He had difficulty staying on
task and was easily distracted, but he was a hard worker. Johnny and the examiner
worked out a system whereby he would earn stickers for his efforts. He seemed
particularly fond of this method. Johnny became a bit restless toward the end of the
session and had some trouble sitting still. At times, he would move around quite a
bit in his chair and stick his head under the armrest. He was always easily redirected
back to the task at hand, however. It was difficult to understand Johnny as, when
speaking, he tended to cover his bottom teeth with his bottom lip. He responded
well when asked by the examiner to repeat himself. Overall, Johnny was a pleasure
to work with and seemed to put forth his best effort (Tables 6.1 and 6.2).
Although a comprehensive evaluation was recommended for Johnny at the time
of his initial evaluation, only measures of intellectual functioning and academic
achievement were completed. Attempts to complete the evaluation were unsuccess-
ful because his mother was unable to bring Johnny back.
On a measure of intellectual functioning, Johnny’s performance fell within
normal limits. He exhibited a relative weakness on measures of perceptual
reasoning, as well as on tasks of verbal comprehension. In working memory,
Johnny’s ability fell solidly within the average range. Likewise, Johnny performed
within normal limits in processing speed. Overall, results indicated that Johnny
generally had well-developed intellectual functioning with relative weaknesses in
some aspects of verbal comprehension and perceptual reasoning. On measures of
academic achievement, Johnny’s reading skills fell within the average range, with
equally well-developed sight-word recognition and reading fluency skills. Johnny’s
6 Bad Signs: Sickle-Cell Disease and Stroke 53

Similarities (8)
Vocabulary (5)
Comprehension (10)
Block Design (5)
Digit Span (10)
Letter-Number Sequencing (10)
Processing Speed Index 97 42nd
Coding (9)
Symbol Search (10)
Full Scale IQ 89 23rd
a

Woodcock Johnson Tests of Achievement – Third Edition Score Percentile
Letter-Word Identification 99 47th
Reading Fluency 96 39th
Calculation 91 27th
Math Fluency 83 13th
Math Calculation Skills 89 23rd
basic math skills fell within the average range. His lowest score was on a measure of
math fluency and fell within the upper end of the below average range, suggesting
that Johnny had not yet mastered basic math skills (i.e., basic math concepts such
as multiplication tables were not yet automatic for him). Results of Johnny’s
achievement skills were generally consistent with his overall level of intellectual
functioning.
Follow-up Evaluation
At the age of 10, Johnny was seen for a follow-up evaluation to assess the impact of his
infarction on his neuropsychological functioning. Similar to his first evaluation,
Johnny presented as a quiet but friendly child. He remembered ‘‘playing the games’’
from his initial evaluation, and was eager to begin testing. He put forth good effort and
it was a delight to work with him. In light of Johnny’s infarction and associated changes
in academic and behavioral functioning, he was administered a comprehensive neuro-
psychological battery designed to assess areas of cognitive functioning that may have
been impacted by his infarction. Language testing was not conducted because this was
being done by his school district (Tables 6.3 and 6.4).

Wechsler Intelligence Scale for Children – Fourth Edition Score Percentile
Similarities (7)
Vocabulary (5)
Comprehension (7)
Block Design (7)
Digit Span (7)
Coding (8)
Symbol Search (9)
On Johnny’s follow-up evaluation, his overall level of intellectual ability fell

within the below average range, with a relative strength in processing speed.
Compared with previous testing, Johnny’s level of intellectual functioning de-
creased noticeably. Johnny did not exhibit any deficits on a measure of sustained
visual attention in the structured one-on-one testing setting. His performance on
measures of rote verbal and visual memory fell within normal limits. Johnny’s
performance on a measure of executive functions fell within gross normal limits,
suggesting intact planning, foresight and flexibility, and an ability to utilize feed-
back to generate problem-solving strategies. However, difficulties were reported
with Johnny’s ability to regulate his behavior, inhibit inappropriate behavioral
responses, and initiate tasks. Johnny’s performance fell within the below average
range in graphomotor ability, visual processing, and motor coordination. Signifi-
cant impairments in Johnny’s fine motor speed and dexterity in his right hand while
maintaining a performance level within gross normal limits with his left hand were
noted. Concerns with depression and withdrawal were also noted.
On his initial testing, results generally indicated that Johnny had intact intellectual
functioning and average academic performance. No concerns were noted with
emotional and behavioral regulation. At that time, he was also doing well in school,
and aside from articulation difficulties, no significant concerns were noted regard-
ing his overall development.
In his follow-up testing, there was a notable decrease in Johnny’s performance
on a measure of intellectual functioning. This decrease was likely a result of
his infarct. Although the exact date of his infarction was unknown, a usually

Omissions [46]
Commissions [37]
Hit RT [54]
Hit RT standard error [45]
Variability [43]
Detectability [45]
Response style [53]
Perseverations [50]
Hit RT block change [35]
Hit SE block change [45]
Hit RT ISI change [43]
Hit SE ISI change [45]
Recall measures
List A trial 1 {0.5}
List A trial 5 {0.0}
Recognition hits {0.5}
Recall errors
Perseverations {0.5}
Free-recall intrusions {0.5}
Cued-recall intrusions {1.0}
Intrusions (total) {0.5}
Faces
Immediate (10)
Delayed (10)
Categories achieved >16th
Total errors 91
% perseverative errors 87
% conceptual responses 93
Failure to maintain set >16th
Behavior Rating Inventory of Executive Function
Inhibit [66]
Shift [64]
Emotional control [62]
Behavioral regulation index [66]
Initiate [69]
Working memory [56]
Plan/organize [50]
(continued)

Organization of materials [45]
Monitor [59]
Metacognition index [57]
Global executive composite [61]
Beery-Buktenica Developmental Test of Visual-Motor Integration 74
Visual perception 77
Motor coordination 78
Grooved Pegboard Test
Dominant hand (left) 85
Nondominant hand (right) 51
developing child, with intact intellectual functioning, typically maintains his or her
level of cognitive functioning over time. Moreover, silent infarctions are associated
with an overall dampening of general cognitive ability and weaknesses in grapho-
motor ability, such as seen on Johnny’s follow-up evaluation. Thus, it is likely that
the decline observed in his intellectual ability was secondary to his silent infarction.
In the absence of his infarct or other injury to his brain, Johnny’s intellectual
functioning would have likely remained in the average range.
Additionally, the new concerns regarding Johnny’s emotional and behavioral
development are likely related to his infarction. Johnny’s stroke was located in the
prefrontal cortex, which is located at the front part of the brain and associated with
the regulation of behaviors and emotions. Difficulties in response inhibition, task
initiation, mood regulation, and behavior that Johnny’s mother reported during
his follow-up evaluation were generally consistent with the difficulties faced by
individuals who suffer from injuries to the prefrontal cortex. Finally, the new onset
of motor difficulties noted in Johnny’s right hand was also consistent with the
location of his left-sided infarction.
Given Johnny’s medical history and the cognitive difficulties that arose as a
result of his stroke, a number of recommendations were advanced. Specifically, it
was recommended that an eligibility meeting be held to determine his qualification
for an Individualized Education Plan (IEP) under the Other Health Impairment
(OHI) category, because his silent infarction may have played a role in his academ-
ic failure. Because Johnny’s new onset of academic difficulties likely also stemmed
from his stroke, it was recommended that he not be retained. Instead, recommenda-
tions included special education services under the OHI category to include
specialized instruction in a small group setting. Because of the change in his level
of intellectual ability, Johnny would likely have a more difficult time acquiring and
mastering new skills and concepts. It was important to get those working with
Johnny to understand that although he looked the same, expectations for him had to
be modified and extra academic support would be required for him to have
academic success.
Given the presence of fine motor and graphomotor difficulties, recommendations
were made that Johnny receive an occupational therapy evaluation at school to
determine his need for services in this area, with a goal of increasing his writing
efficiency. In the meantime, it was recommended that he be provided with class-
room notes to limit the demands on his already strained graphomotor skills.
Consultation with a mental health professional to address emotional and behav-
ioral concerns was also advised. Specifically, consultation with a child psychologist
with expertise in working with children who have suffered from brain injuries was
suggested to address anger management and coping skills. At this point, medication
was not recommended; however, if emotional and behavioral concerns did not
improve over time, medication management would become an option.
Finally, in light of his sickle-cell disease and silent infarction, it would be
important to continue to monitor Johnny’s functioning over time. Most children
with sickle-cell anemia are followed closely by their pediatric hematologists at least
once a year. Those who have more severe complications, such as Johnny, are
followed more closely (approximately once a month when they come in for their
monthly blood transfusions). In addition to his medical needs, it would also be
important to monitor his neuropsychological functioning over time. Unfortunately,
as was the case with Johnny, silent infarctions are typically not noticed right
away. Thus, children may suffer ‘‘silently’’ for years without anyone knowing
that they have experienced a stroke. By monitoring their neuropsychological
functioning, changes can be detected and accommodations can be made and/or
adjusted as necessary.
Executive Functions Include self-regulatory skills that affect an individual’s

planning, flexibility, generation of information, inhibition of impulses, and working
memory (i.e., the ability to hold information in memory while performing some
operation on it or manipulation using it). The ability to regulate emotions and
attention are also key hallmarks of executive functioning.
References
Day, S., & Marion, S. B. (1996). Educator’s guide to sickle cell disease. Memphis, TN: St. Jude
Children’s Research Hospital.
Kirkham, F. (2007) Stroke and cardiovascular disease in childhood. Cambridge, MA: Blackwell.
National Heart Lung Blood Association, www.nhlbi.nih.gov/health/dci/Diseases/Sca/SCA_WhatIs.
html. Provides information about sickle cell disease and engages in research for sickle cell
disease.
Sickle Cell Disease Association of America, (1998). Parent/teacher guide: How parents and
teachers can work together to achieve school success for children with sickle cell anemia.
Baltimore, MD.
Children’s Hemiplegia and Stroke Association, www.chasa.org/. A non-profit support group for
parents and families of children who have had a stroke.
Earles, A., Lessing, S., & Vichinsky, E. (Eds.). (1993). Parents’ handbook for sickle cell disease:
Part II: Six to eighteen years of age. Berkley, CA: State of California Department of Health
Services.
Lessing, S., & Vichinsky, E. (1998). Parents’ handbook for sickle cell disease: Part I: Birth to six
years of age. Oakland, CA: State of California Department of Health Services.
Sickle Cell Disease Association of America, (1998). Parent/teacher guide: How parents and
teachers can work together to achieve school success for children with sickle cell anemia.
Baltimore, MD: Sickle Cell Disease Association of America.
Sickle Cell Disease Association of America, www.sicklecelldisease.org/. Dedicated to finding a
cure for sickle cell disease. The Web site provides general information, research updates, and
links to additional resources.
Chapter 7
Life Interrupted: Medulloblastoma
Peter L. Stavinoha
Anthony’s parents had been planning a family trip to the coast for months. Anthony,
a precocious 4-year-old with excellent language skills, had been to the beach once
before and could not stop talking about the upcoming trip. On a cool Friday
morning in autumn, Anthony’s mother was busy packing the family’s things for
their 2-week vacation. She had decided to take the day off from work while
Anthony was in day care so that she could take care of all the last-minute details.
When the day-care staff called to report that Anthony did not seem right, she figured
he might have come down with an illness that would make the plane ride less
pleasant, but she certainly did not anticipate that the vacation would never happen.
When she arrived at the day care, she learned that Anthony had been having
problems with balance all morning and had fallen several times. She also noticed
that his eyes were moist and that his head was tilted to one side. ‘‘Tears are falling
from my eyes, Mommy,’’ said Anthony with only a slight hint of distress in his
voice but still looking to his mother to somehow make it stop. Anthony’s mother
felt her heart jump and quickly scooped up Anthony and shuttled him to the
emergency department.
Within an hour, Anthony had been sedated and was undergoing a Magnetic
Resonance Imaging (MRI) scan. Within 4 hours, a neurosurgeon was describing to
Anthony’s parents the lemon-sized mass that had shown up on the MRI in the
posterior fossa, the area of the brain that houses the cerebellum and critical
brainstem structures. The neurosurgeon was personable but very serious, and
Anthony’s parents consented to the recommended treatment, which consisted of
creating a hole in the back of Anthony’s skull to remove the tumor.
By Sunday morning, the family’s vacation was a distant memory, and the
neurosurgeon told Anthony’s parents that the surgery had gone well. They held
Anthony’s hand while he was in the intensive care unit, counting their blessings that
their child had survived, without realizing that the battle was not over.
Samples of the tumor tissue were analyzed and identified as medulloblastoma, a
malignant and aggressive type of Primitive Neuroectodermal Tumor (PNET). As
Anthony recovered from neurosurgery and became increasingly alert and active, his
parents were learning about the risks and benefits of the proposed treatment plan.
Specifically, they learned that Anthony would need to undergo a course of radiation

60 P.L. Stavinoha
therapy in which radiation would be delivered directly to his brain and spine, and
they also learned about the months of chemotherapy that Anthony would have to
endure following cessation of radiation. Still in shock from their realization of how
close Anthony had been to death, his parents did not really process some of the risks
stated to them with regard to radiation and chemotherapy, including declines in IQ,
learning problems, hair loss, and growth suppression. They also did not heed, or
perhaps even hear, the recommendation that they should have Anthony evaluated
by a neuropsychologist in the coming years in order to keep close tabs on his
neurocognitive development in light of the tumor and its treatments.
Fast-forward 8 years, and Anthony was in the middle of fifth grade and strug-
gling significantly. For years, Anthony underwent routine MRI scans and endocrine
treatments (e.g., growth hormone), and his parents were always relieved that there
was no recurrence of the tumor. For kindergarten through fourth grade, Anthony’s
parents had enrolled him in a small private school, where they believed that he
would get any extra attention he might need. The teacher-to-student ratio was low,
and Anthony had a series of kind teachers who always seemed to have a soft spot for
this first child they had ever known who had experienced a brain tumor. Anthony’s
parents felt that they were not being overprotective but simply providing Anthony
with a school placement that would give him plenty of time to mature as they
harbored lingering concerns about his ability to integrate successfully in an over-
crowded public school system that they perceived as overwhelming. They always
felt reinforced when his report cards said that he was making satisfactory progress
and underscored what a sweet and compliant child he was. Anthony’s parents were
well-educated professionals who had an inkling that he was not as strong in math as
perhaps other students in his grade might be, and they also noticed that he moved a
little slower and seemed a little more awkward than many other children of his age,
but otherwise the consistently positive teacher comments reinforced their belief that
Anthony was progressing well.
At the end of fourth grade, Anthony’s father was transferred by his employer,
and the family had to move. Anthony’s parents were devastated that he would no
longer be able to attend the private school where he had seemed so comfortable, but
circumstances dictated that they seek a new educational placement for Anthony.
After exhausting all options, Anthony’s parents determined that the only placement
for him would be their local public elementary school. They felt confident that
Anthony had progressed well over the years, and they knew that the elementary
school was highly rated. So with only a little trepidation, Anthony’s parents
enrolled him in the fifth grade.
Within the first few weeks, it was clear that things were not going well.
Anthony’s teacher already had sent notes home about unfinished work in the
classroom, and Anthony was complaining that he had no friends and that the
work was very hard for him. He wanted to do well and please his teachers, so he
was adamant about completing all of his homework each night, though this was
taking hours, to the point of significant fatigue. Anthony’s parents were particularly
distressed after receiving results of benchmark testing showing that Anthony was
not keeping up with his classmates, particularly in math.
7 Life Interrupted: Medulloblastoma 61
A parent–teacher conference was called 5 weeks into the school year, and
Anthony’s parents were shocked to learn how far he was behind typical fifth
grade students. School staff indicated that they would like to do some testing
with Anthony to see whether he needed more intensive school services, such as
those offered through special education. Anthony’s parents were dismayed at the
suggestion and could not even fathom that their child could be a special education
student. After a few days of soul-searching and watching Anthony become more
and more unhappy and even fearful of going to school, Anthony’s parents recalled
the neurosurgeon’s suggestion of a thorough neuropsychological evaluation. They
discussed this with the school, and it was determined that, given Anthony’s history
of brain tumor, a neuropsychological evaluation would be the most appropriate
starting point for determination of needs at school.
Test Results
Dual priorities dictated the scope of the neuropsychological evaluation. First,

Anthony had never undergone neurocognitive evaluation in the past, even though
this had been recommended to his parents. Because several patterns of findings in
children who have experienced medulloblastoma and subsequent radiation and
chemotherapy treatments are common (such as decreases in IQ, slower processing
speed, and difficulties with attention and memory), a broad group of tests was
selected. Second, the practical issue of identifying Anthony’s educational needs as
well as helping to elucidate the most appropriate educational placement for
Anthony within the public school dictated that the evaluation includes measures
that would satisfy the multidisciplinary committee that would ultimately plan
Anthony’s educational placement.
The initial interview with Anthony’s parents illuminated their conflicted feelings
about his progress. On the one hand, they seemed sensitive to the fact that he was
not as well-developed cognitively, socially, and academically as many other chil-
dren of his age, but on the other hand, they were holding dearly to their pretumor
picture of Anthony as a bright, energetic, and creative boy with limitless potential.
Anthony was a bit wary of the testing situation at first, but he quickly settled in
and seemed to enjoy the one-to-one attention. He possessed physical characteristics
common to children who have undergone craniospinal radiation during early
childhood, including hair loss and short stature. His movements tended to be
relatively slow and cautious, but he seemed to be in a good mood. He fatigued
relatively easily, and was given more breaks than is typical during the course of an
evaluation. In fact, he worked rather slowly and needed so many breaks that testing
had to be completed over two separate sessions. Anthony appeared to have mild
difficulty with attention, though his behavior was not at all impulsive. He seemed
very eager to please the examiner and to perform well on testing, and at times he
even seemed mildly anxious when he was not able to complete a task within time
limits.
62 P.L. Stavinoha
Parent and teacher behavioral ratings indicated social difficulties that seemed
more prominent at school than home. In addition, Anthony was judged to be more
withdrawn and anxious in his classroom environment than most boys of his age,
though Anthony’s parents did not raise the same concern about anxiety at home
except when it came to homework activities. Mild difficulties with attention and
concentration were also noted at school, though again these difficulties were not
reported as prominent at home.
The evaluation (Tables 7.1–7.3) revealed that Anthony was experiencing a
number of common late effects of treatment for medulloblastoma. In particular,
his neurocognitive pattern was characterized by a significant discrepancy between
verbal information processing abilities and nonverbal abilities, with his composite
IQ falling below average. In contrast to average verbal abilities, Anthony exhibited
significant weaknesses across tasks involving visual-spatial information processing
as well as processing speed and cognitive efficiency. Auditory working memory
was low average, with Anthony exhibiting deterioration of working memory with
increasing complexity of information. Evaluation of learning and memory func-
tions suggested a pattern congruent with measurement of Anthony’s overall cogni-
tive ability. Specifically, his capacity to take in, store, and later retrieve language-
based information was much better developed than his nonverbal, visual-spatial
memory functions. Visual-motor skill development was well below average, and
Anthony had difficulty both with visual-perceptual functions as well as bilateral
motor dexterity. His performance on tasks tapping executive functions was
suggestive of difficulty with both abstract concept formation and cognitive flexibil-
ity. Anthony tended to have difficulty generating appropriate problem-solving

Similarities (9)
Vocabulary (10)
Comprehension (9)
(Information) (11)
Block Design (5)
Digit Span (8)
Coding (4)
Symbol Search (6)
a

Woodcock Johnson Tests of Achievement – Score Percentile Grade Equivalent
Third Edition
Academic skills 93 33rd 5.2
Academic fluency 78 7th 3.6
Academic applications 85 15th 3.9
Broad reading 90 25th 4.7
Letter-word identification 101 52nd 6.7
Reading fluency 82 12th 3.6
Passage comprehension 92 29th 4.5
Broad math 78 7th 3.5
Calculation 77 6th 3.5
Math fluency 74 4th 3.7
Applied problems 82 11th 3.5
Broad written language 87 20th 4.5
Spelling 97 42nd 5.7
Writing fluency 76 5th 3.6
Writing samples 91 26th 4.3
strategies and benefiting from direct feedback in order to modify his problem-
solving approach.
Academically, Anthony exhibited patterns of relative strengths and weaknesses
that correlated with his underlying neurocognitive capacity. Specifically, his overall
reading skill development was measured in the low end of the normal range, with
his composite written expression performance falling in the low average range.
Interestingly, Anthony’s strongest language-based performances were on tasks that
are amenable to rote memory (e.g., sight word recognition and written spelling). In
contrast, Anthony struggled significantly on math tasks such that his overall math
development was well below average and more in line with his visual-spatial and
nonverbal information processing weaknesses.
A prominent weakness emerged when the added dimension of speed of proces-
sing intersected with academic skill performance. Congruent with his slow cogni-
tive efficiency, which was documented in testing and informally observed during
the evaluation, Anthony struggled with academic testing that required quick per-
formance. This was in keeping with both parent and teacher reports that Anthony
takes a very long time to complete classroom and homework academic activities.
Anthony’s test result pattern illustrated a number of issues relatively common in

children treated for medulloblastoma with radiation and chemotherapy, and
his treatment before 6 years of age raised his risk for neuropsychological deficits.
Functional deficits commonly seen following radiation and chemotherapy treat-
ment for medulloblastoma include difficulties with nonverbal, visual-spatial
64 P.L. Stavinoha

Tests Score
California Verbal Learning Test
Recognition {0.0}
Dot locations
Learning (6)
Total score (6)
Long delay (5)
Stories
Immediate (8)
Delayed (7)
Delayed recognition (8)
Faces
Immediate (5)
Delayed (6)
Total errors 71
Preferred hand (right) {2.88}
Nonpreferred hand {3.29}
Beery-Buktenica Developmental Test of Visual-Motor 72
Integration
Benton Judgment of Line Orientation Test {2.84}
information processing, motor dexterity, executive functions, and speed/efficiency

of information processing and are presumed to be due to white matter damage.
Radiation by itself, and in combination with chemotherapy, is toxic and often
results in damage to the protective coating of the long nerve projections that
make up the white matter. Younger children appear to be particularly susceptible
to this damage and associated functional deficits. Compromise to these main
communication pathways that let one brain region efficiently ‘‘talk’’ to others
results in a pattern of deficits that is very consistent with Anthony’s weaknesses.
Anthony’s effort and reasonably well-developed rote verbal memory ability
likely propped up his academic performance over the years. This was magnified
by his participation in a private school setting that did not effectively document or
communicate his slower progress compared with peers in feedback to Anthony’s

family. He typically perceived himself to perform reasonably well because he did
not have a clear standard to which to compare himself. Consequently, his immer-
sion in a regular education, public school setting resulted in a mismatch between
Anthony’s previously unidentified neurocognitive deficits secondary to treatment
for medulloblastoma and an increasingly demanding curriculum emphasizing
abstract thinking, synthesis, and information organization. Anthony wanted to
perform well but found that even his best efforts produced mediocre results. This
was frustrating for Anthony as he tried to assimilate into a new school and new peer
group, and he started to feel anxious about his performance to the point of being
somewhat fearful of going to school.
Anthony’s attempts to socialize with same-age peers were not fruitful for several
reasons. He showed significant physical stigmata of early radiation treatment (e.g.,
hair loss, short stature) that his elementary school peers had never seen before.
Anthony also had difficulty perceiving social cues and responding quickly to
typical middle-school social interactions secondary to his visual-spatial information
processing deficits and generally slow pace of cognitive processing.
During an extensive feedback conference with Anthony’s parents as well as
consultation with staff at school, a number of recommendations were made to
address the prominent issues with which Anthony presented, including difficulties
at school, underlying neurocognitive weaknesses, and difficulties with social inter-
actions and emotional adjustment.
Because Anthony had not already been identified as a student requiring special
education services, this was the top priority. He already had begun showing anxiety
about his capacity to successfully perform schoolwork and difficulty fitting in with
peers. Consequently, the recommendation was made to the multidisciplinary team
determining special education eligibility that it swiftly act to develop an appropriate
Individualized Education Plan (IEP) and supportive educational placement for
Anthony on the basis of his academic and cognitive deficits secondary to brain
tumor and its treatment. Because Anthony had experienced a significant health
condition that clearly resulted in significant educational need, the handicapping
condition of Other Health Impairment (OHI) seemed most appropriate, because it
captured the link between Anthony’s deficits and corresponding medical etiology.
In particular, emphasis was placed on ensuring that Anthony received modified
instruction in math given that his skill development in that core subject area lagged so
significantly behind that of his same-age peers. In addition, strategies for dealing with
Anthony’s slow cognitive processing speed and fatigability were provided that includ-
ed reduction in the amount of homework assigned to Anthony, availability of classroom
support to assist with completion of assignments during the school day, and a limit on
the time that Anthony would be permitted to spend on homework each evening.
A number of strategies were suggested related to deficits in visual-spatial
information processing. Because Anthony exhibited a relative strength in verbal
memory and verbal cognitive ability overall, rehearsing information out loud in
order to better digest and remember it was recommended so as to take advantage of
this strength. This oral rehearsal technique included reading or reciting information
66 P.L. Stavinoha
aloud as a primary study method for remembering information later. Subsequently,

oral testing procedures could be utilized judiciously given Anthony’s handwriting
deficits. Compensatory strategies for organizing and dividing visual information
also were recommended. For example, Anthony could receive direct instruction in
using a highlighter to divide a worksheet into smaller, more manageable parts.
Using spacers or place markers could also reduce complex visual stimuli such as
worksheets or pages of text to more manageable amounts.
An occupational therapy evaluation was recommended because of Anthony’s
difficulties with fine motor dexterity and handwriting. Difficulties with speed
of information processing compound problems with handwriting, so it was recom-
mended that Anthony have access to teacher or peer notes and that he not be
required to copy large amounts of information from the board. It was stressed
that Anthony likely expends a great deal of energy on tedious tasks such as copying
and handwriting, and this energy could be much better spent on higher level
cognitive/academic activities.
The lack of understanding of the full range of implications of Anthony’s brain
tumor and its treatment extended far beyond the academic domain. Anthony’s peers
had little to do with him because of differences in physical appearance as well as his
slower speed of processing. Although Anthony was not bullied, he certainly was not
included, and this magnified any normal adjustment issues that would be associated
with starting a new school. As such, two methods were advised. First, a Child Life
Specialist, a professional whose role includes assisting patients and families coping
with medical illness and medical procedures, was asked to speak to Anthony’s class
at school in order to talk more about the difficult experiences and treatments that he
had endured. Second, Anthony was selected to participate in a friendship group
facilitated by the school guidance counselor focusing on social interaction and
social skill development.
Although Anthony’s parents had come a long way in their understanding of his
deficits and the long-term implications, it was clear that they had always struggled
with the potential that Anthony would have certain neurocognitive limitations,
and they seemed to be facing these issues at this time only out of necessity. As
an extension to the feedback conference, a series of additional consultation appoint-
ments were scheduled with the neuropsychologist to help provide guidance with IEP
implementation, education regarding late effects of brain tumors and their treatment,
and psychosocial support for these parents who were struggling to fully acknowledge
and appreciate their child’s neurocognitive assets and weaknesses.
Update
As difficult as it had been for Anthony’s parents to finally seek out neuropsycho-
logical evaluation in the first place, they seemed eager to get on the neuropsychol-
ogist’s calendar for a follow-up evaluation 18 months later. Through the process of
being confronted with the late effects of Anthony’s treatment for medulloblastoma
as he integrated into a new school setting, Anthony’s parents caught a glimpse of

the numerous developmental challenges that awaited Anthony in the coming years.
In the short-term, with appropriate educational placement and planning, Anthony’s
anxiety about school and his classroom performance had reduced significantly. He
seemed happier in his new school placement, and his participation in the social
group had yielded benefits in terms of peers including him in activities more often,
though he still did not have a ‘‘close’’ group of friends. Even with these positive
changes, Anthony’s parents began to recognize that there would be tough days
ahead as Anthony transitioned into junior high, high school, and young adulthood.
Child Life Specialist A professional typically employed in a hospital setting that

works to support the psychosocial development and emotional coping of children
who are ill or who are undergoing medical treatment.
Medulloblastoma A type of malignant brain tumor that grows in the region of the
posterior fossa. Treatment for this type of aggressive brain tumor in children
typically requires surgical removal of the tumor followed by treatment with radia-
tion and chemotherapy in order to minimize risk for regrowth of the tumor.
Posterior Fossa This is a region inside the skull that is low and at the rear of the
skull. This vault houses important brain regions including the cerebellum and the
brain stem.
Primitive Neuroectodermal Tumors Sometimes referred to as PNET, these are a
group of malignant and rapidly growing brain tumors that have a high rate of
recurrence. Medulloblastoma is a type of PNET.
White Matter Consists of long projections from nerve cells that are covered in a
protective coating called myelin, which is white in color. White matter acts as the
communication pathway so that one region of the brain can communicate efficiently
with another.
References
Butler, R. W., & Mulhern, R. K. (2005). Neurocognitive interventions for children and adolescents
surviving cancer. Journal of Pediatric Psychology, 30(1), 65–78.
Mulhern, R. K., Merchant, T. E., Gajjar, A., Reddick, W. E., & Kun, L. E. (2004). Late
neurocognitive sequelae in survivors of brain tumours in childhood. The Lancet Oncology,
5(7), 399–408.
68 P.L. Stavinoha
National Cancer Institute. (2006). Late effects of treatment for childhood cancer (PDQ1).
Retrieved October 16, 2006 from http://www.cancer.gov/cancertopics/pdq/treatment/lateef-
fects/HealthProfessional/page2.
Schatz, J., Kramer, J. H., Ablin, A., & Matthay, K. K. (2000). Processing speed, working memory,
and IQ: A developmental model of cognitive deficits following cranial radiation therapy.
Neuropsychology, 14(2), 189–200.
American Brain Tumor Association. Provides funding for brain tumor research and offers educa-
tional and support services for patients and families. Address: 2720 River Road Suite 146, Des
Plaines, IL 60018-4110; phone: 1-800-886-2282; Web site and e-mail: http://www.abta.org;
info@abta.org
American Cancer Society. Dedicated to eliminating cancer through research, education, advocacy,
and service. Phone: 1-800-ACS-2345; Web site: http://www.cancer.org
The Brain Tumor Society. Provides information, resources, and support for people affected by
brain tumors. Address: 124 Watertown Street, Suite 3H, Watertown, MA 02472; phone: 1-800-
770-TBTS; Web site: http://www.tbts.org
The Children’s Brain Tumor Foundation. Committed to improving treatments, quality of life, and
long-term outcomes for children with brain and spinal cord tumors through research, support,
education, and advocacy. Address: 274 Madison Avenue, Suite 1004, New York, NY 10016;
phone: (914) 238-7658; Web-site and e-mail: http://www.cbtf.org; info@cbtf.org
National Brain Tumor Foundation. Provides information about brain tumors and their treatment.
Information is available on clinical trials and medical centers specializing in brain tumors.
Address: 22 Battery Street, Suite 612, San Francisco, CA 94111-5520; phone: 1-800-934-
CURE; Web site and e-mail: http://www.braintumor.org; nbtf@braintumor.org
Chapter 8
The Mystery of the Falling Grades: Seizure
Disorder
Working with children with epilepsy is like reading a good mystery. When learning
or emotional problems occur, the neuropsychologist’s job is to help identify
‘‘whodunit.’’ The list of likely suspects from the epilepsy perspective include
whatever is atypical about the brain that is the basis of the seizures, seizures
themselves, abnormal electrical discharges between seizures (also known as sub-
clinical seizures), and side effects of medications used to treat the seizures. These
suspects may set the stage for problems with attention, learning, memory, and
emotional functioning. The reactions of family and friends to the epilepsy diagnosis
and/or seizures may lead to feelings of anxiety and depression. Children with
epilepsy can also develop learning or emotional problems for the same reasons
that other children do, such as genetics or life experiences. John was referred for
neuropsychological evaluation to sort through these suspects to find the cause of his
falling grades.
John was attending seventh grade at the time of referral. His parents reported that
he started off well in school. He began reading prior to starting kindergarten. He
was placed in a program for gifted students in first grade and continued in this
program throughout elementary school. John developed complex partial seizures
between fourth and fifth grade. John would become confused during seizures and
was sleepy after a seizure ended. Since seizures were only occurring at home, his
parents informed the school nurse, but no one else knew about his epilepsy. His
antiepileptic drug (AED) supported good seizure control. During fifth grade, John
seemed to work harder for his grades but continued to do well.
Just before John was to start sixth grade, he began to experience frequent
seizures. His parents reported that sixth grade was very hard for John because of
frequent changes in medication and in dose. John was often sleepy as he adjusted to
each change. When seizures occurred in school, John was teased by peers. To make
matters worse, his best friend throughout elementary school moved away, leaving
him with no one to come to his defense. According to his parents, other friends just
drifted away, failing to include John in activities. His grades dropped to Bs and Cs.
An effective AED combination was identified over the summer following sixth
grade, raising his parents’ hope that seventh grade would be better. However, at the

70 L.B. Blackburn
time of referral, John was in danger of failing seventh grade, with Ds and Fs in
most subjects.
At the time of referral, John’s parents expressed concern about his memory. John
would forget what he was told to do. Even when he would begin a task, he would
get distracted and fail to complete it. He needed prompts to do things that should be
habit, such as brushing his teeth or taking his medication. He had trouble finding
possessions he had put away. Regarding schoolwork, John’s parents reported that
he often forgot to write down assignments and to turn in homework he had
completed. They tried organizing John’s binder for him, providing color-coded
folders for each class. They put reminder notes on his completed work. However,
even with this help, he was still inconsistent in turning in work. Late assignments
were one factor in his poor grades.
John’s teachers noted inconsistency in memory, stating that John would appear
to understand a concept one day but not the next day. Poor performances on tests
were also contributing to his poor grades. However, his parents indicated that he
could remember material for tests if he studied for them. John could remember
upcoming events that were important to him and past events he had enjoyed. He
was doing relatively well in his Spanish class, remembering new vocabulary and
grammar as it was introduced.
Although his seizures were once again well controlled, John did not make new
friends. His school counselor reported that he sat with other students during lunch
but did not talk to them. John’s parents described his interests as more ‘‘immature’’
than peers. They also indicated that John had difficulty adjusting to change, such as
the move to junior high. Although his parents provided no further examples, his
difficulty adjusting to change became a very important clue in understanding John.
When John arrived for testing, he was like many adolescents referred for testing.
He responded to the questions with one-word answers, providing little help
in understanding his perspective on his problems. He knew school was hard.
He complained that teachers went too fast, making it hard to take notes or write
down assignments. John spent the rest of the interview staring at his shoes and
offering ‘‘I don’t know’’ or shoulder shrugs as answers to the questions, all while his
parents were struggling to remain quiet, barely controlling the urge to jump in and
answer for him.
John’s behavior during testing provided two important clues regarding his
problems. First, his affect remained flat throughout testing. He showed no reaction
to praise or pride in his accomplishments when successful. He appeared to have
little confidence in his skills, becoming easily overwhelmed. He gave up on some
tasks (saying ‘‘I don’t know’’) before he had even heard the complete question or
direction. However, with encouragement to listen again and then take a guess, he
often did know the correct answer. He became visibly anxious with the introduction
of each new task. Second, he seemed to have problems with expressive language.
He knew lots of facts but had difficulty organizing them to effectively answer test
questions. He could engage in conversation if asked a series of yes/no questions
but could not elaborate on answers in a way that continued the conversation.
He also had trouble communicating in writing. Generation of written sentences
8 The Mystery of the Falling Grades: Seizure Disorder 71
was painstakingly slow. While his parents and teachers were focused on his
memory, his behavior during testing suggested that emotional factors and language
skills were also likely suspects in his falling grades.
Test Results
Although John might have been expected to struggle with tasks involving under-
standing and remembering language, his achievement on these tasks fell in the
average to high average range (Table 8.1).
John retold stories in a somewhat disorganized fashion but captured the main
theme and most details. He used effective strategies to organize his recall of items
from a shopping list. Rote learning, that is, learning facts through repetition, emerged
as a relative strength for John. This strength may have supported his rapid learning of
early academic information. John had trouble remembering some types of visual

Clinical Evaluation of Language Fundamentals – Fourth Edition
Understanding paragraphs (9) 37th
Total learning 115 84th
Long-delay free recall 115 84th
Recognition 108 70th
Stories
Immediate recall (13) 84th
Delayed recall (12) 74th
Dot Locations
Learning (2) <1st
Faces
Immediate recognition (9) 37th
Delayed recognition (11) 63rd
Rey-Osterrieth Complex Figure Test
Immediate recall 68 <1st
Delayed recall 65 <1st
Recognition 94 35th
Test of Variables of Attention
Omission errors <40 <1st
Commission errors 104 60th
Response speed 82 12th
Variability 96 45th
a
72 L.B. Blackburn
information. He could remember faces but had difficulty remembering spatial

position and orientation. For example, he could recognize details that made up a
complex geometric design he had copied, but he could not remember where to put
the details when he attempted to draw the design from memory.
Overall, results of memory testing suggested that John should be able to do many
of the everyday memory tasks that had his parents concerned. His relative weakness
in spatial memory might affect achievement in a few subjects, but John should have
been able to use his strength in verbal memory to compensate. Results suggested
that something was getting in the way of John’s use of his memory skills. Attention
and emotions remained likely suspects.
John’s attention was assessed through parent and teacher ratings, as well as
through a computerized attention task. John’s parents and all but one of his teachers
rated his attention as age appropriate. Scores from the computer task suggested that
John was having problems remaining vigilant.
However, his behavior during the task was not consistent with an attention
deficit-hyperactivity disorder. John would give up on the game and stop responding
for a period of time after he had made a mistake. He never stopped paying attention
to the task, continuing to watch the screen and muttering to himself about what was
being presented. At the end, he described the task in the same terms he used to
describe school: ‘‘It was too hard because it went too fast and I just could not do it.’’
His performance appeared to reflect his pattern of coping rather than his level of
development of attention skills.
Emotional functioning was assessed through questionnaires completed by John
and his parents and teachers. Not surprisingly, John denied that he was having any
problems, worries, or concerns. Most teachers described him as a typical adolescent,
while one teacher noted problems with social skills. Although John was not earning
good grades, he was not causing problems in the classroom. His parents’ ratings
depicted John as moody and isolated. They noted that he coped with challenges by
attempting to withdraw from or avoid the challenging situation. John’s behavior
during testing reflected low self-esteem, with symptoms of anxiety and depression.
Children with epilepsy are at increased risk to develop significant problems with
anxiety and depression, but it appeared that John’s problems coping with change
were evident before he developed epilepsy and became worse since seizure onset.
When the testing results were shared with John’s parents, they reported a new
piece of information. Even though they had been asked if anything else was going
on in John’s life, they had failed to mention that they were planning to move to a
new house in the same community and John had indicated that he would not go.
Clearly the adjustment to the impending family move and the other changes in his
life (epilepsy, best friend moving away, beginning middle school) had over-
whelmed John. The unfortunate handling of his epilepsy by school staff when
seizures began to occur in school set John up to become isolated from peers. He
had no support network to help him through the challenges his epilepsy presented.
His parents were encouraged to get John into psychotherapy immediately. Involve-
ment in a social skills group in the school setting was also recommended to help
John reconnect with his peers.
Often for children with epilepsy, the ‘‘whodunit’’ is not a single suspect but a
gang of suspects. It was important to follow up on the other clues in John’s behavior
during testing.
The results of John’s intellectual screening came as a surprise (Table 8.2). His
achievement fell in the average range, not the gifted range. His pattern of relative
strengths and weaknesses was even more concerning. Junior-high-level instruction
occurs primarily through language (lectures, discussion, reading), and John’s lan-
guage-based reasoning skills fell in the low average range. Given his early academ-
ic history, his teachers and parents were still expecting gifted work from a child
who was no longer functioning in the gifted range. His teachers would need to
provide more explanation in order for John to understand concepts fully. Concepts
are more likely to be retained from day to day when fully understood. John was
right—his teachers were going too fast. Clearly, John also needed to work harder
than he had in the past so as to keep pace with his peers.
The results of John’s achievement testing provided further evidence of a change
in his rate of development (Table 8.3). His reading and math skills fell in the
average range. He was no longer making gains in these areas at a faster rate than his
peers. His scores on writing tasks fell in the low average range. Qualitatively, his
writing was even worse. John struggled with the very act of handwriting and was
most legible when printing. He had difficulty generating a complete thought when
writing, just as he had when speaking. He left out capitalization and punctuation,
omitted letters from words, and occasionally omitted words from sentences as he
struggled to keep in mind what he wanted to say. This struggle to organize and keep
track of his thoughts was also evident when John spoke. Upon observing his writing
speed and content, it made perfect sense that John was struggling to take meaning-
ful notes in lecture classes and failing to record assignments in the time allotted.
John was right—his teachers did not give him enough time.
Wechsler Abbreviated Scale of Intelligence Score Percentile
Vocabulary (8) 25th
Similarities (7) 16th
Block Design (11) 63rd
Matrix Reasoning (11) 63rd
Verbal IQ 87 20th

Woodcock Johnson Psychoeducational Battery – Third Edition Score Percentile
Reading fluency 103 58th
Passage comprehension 98 24th
Math fluency 95 36th
Writing fluency 83 13th
Writing samples 89 24th
74 L.B. Blackburn
John’s difficulty organizing his thoughts, both when speaking and writing,
suggested an expressive language disorder. Failing grades were occurring in
applied subjects where lecture and class discussion were the primary means of
teaching. In these classes, note-taking was essential, because test questions were
often based on lecture material. Demonstration of learning in these classes often
involved at least some questions requiring the generation of sentences. It was
recommended that John have assistance with note-taking (an assigned note-taker
or a copy of the teacher’s notes). John’s teachers also were encouraged to monitor
his recording of assignments to ensure that John had enough time to get all the
information. Accommodations for test-taking were also recommended, including
extra time to complete tests and grading responses based on content rather than on
writing mechanics (grammar, punctuation, spelling).
It was recommended that the speech and language pathologist serving John’s
school evaluate John’s verbal and written expressive language skills. The quality of
John’s answers suggested that he was having difficulty with higher order language
skills such as inference, comparison, and decoding the meaning of ambiguous
words (e.g., figures of speech, words with multiple meanings). At his grade level,
learning in applied subjects is often assessed through questions involving these
skills. The speech and language pathologist was encouraged to look beyond John’s
obtained test scores, to consider the speed and qualitative aspects of his responses
and not just the accuracy of the eventual response.
If John performed well on verbal memory tasks, why was he failing to remember
everyday things? His test results suggested that the inconsistency in his memory
was reflecting the disruptive effects of depression on attention and motivation. At
home and in school, John likely was often preoccupied with his worries and
concerns, rather than listening carefully to what adults were saying. Even when
he remembered directions, he demonstrated little motivation to attempt many of
the tasks presented but felt immediately overwhelmed and certain he would fail.
‘‘I forgot’’ became a convenient explanation. His parents were reassured that John’s
everyday memory would improve as he gained confidence in himself through
psychotherapy, and in the meantime, they were encouraged to give him single-
step commands (one thing to do at a time). John’s teachers were encouraged to
check his understanding of directions by having him demonstrate what he should
do. This would also address John’s concerns about making mistakes.
Three suspects were identified as responsible for John’s falling grades: a change
in rate of intellectual development, emergence of an expressive language disorder,
and emotional distress. The key to helping John was to recognize that all of these
factors were interrelated. John needed both academic accommodations and psycho-
therapy to stop the failing grades.
One mystery was solved for John, while another was identified: What caused the
change in John’s rate of development of intellectual skills and language skills? Only
time will help to solve that mystery. It was possible that whatever was underlying
John’s epilepsy was also responsible for the changes in his pattern of skill develop-
ment. Other suspects remained, including his medications and emotional distress.
The best way to understand the change was to follow John with repeated assess-
ments over time. John’s story was not done, but testing had gotten him the help he
needed to stop the failing grades.
Complex Partial Seizures: Partial seizures arise from a small area of the brain.
Simple partial seizures involve a sensation such as a feeling, taste, or smell. These
events do not disrupt consciousness. Complex partial seizures spread to involve
more brain tissue but still remain contained in a single brain region. They are
characterized by alteration in consciousness and may be accompanied by staring,
semipurposeful movements (e.g., picking at clothing, walking in a circle), sensa-
tions, and/or oral automatisms (lip smacking, repetitive swallowing). Depending on
the brain regions involved, a person may be able to understand what others are
saying and/or speak during these events.
Expressive Language Disorder: Expressive language disorders involve delays in
the development of the language organization, sentence structure, and grammar to
support communication of desired meaning. This does not include the ability to
accurately produce speech sounds (articulation).
Higher Order Language Skills: Higher order language skills require the integration
of information as the basis for a language response, including the ability to flexibly,
based on situation, interpret word meaning, body language, and tone of voice (e.g.,
interpreting figures of speech, jokes, or words with more than one meaning). Higher
order language skills also include integrating current information with past learning
as the basis for making inferences, making comparisons, and drawing conclusions.
References
Austin, J. K., & Caplan, R. (2007). Behavioral and psychiatric comorbidities in pediatric epilepsy:
Toward an integrative model. Epilepsia, 48(9): 1639–1651.
Baker, G. A., Spector, S., McGrath, Y., & Soteriou, H. (2005). Impact of epilepsy in adolescence:
A UK controlled study. Epilepsy and Behavior, 6: 556–562.
76 L.B. Blackburn
Dunn, D. W., Austin, J. K., & Huster, G. A. (1999). Symptoms of depression in adolescents with
epilepsy. Journal of the American Academy of Child and Adolescent Psychiatry, 38:
1132–1138.
Plioplys, S. (2003). Depression in children and adolescents with epilepsy. Epilepsy and Behavior,
4: 39–45.
Blackburn, L. B. (2003). Growing up with epilepsy: A practical guide for parents. New York:
Demos Medical Publishing.
E-communities: Entitled to Respect – Straight Talk for Teens about Epilepsy and Acceptance and
Teen Group.
Educational Materials: Epilepsy in the Teen Years (video).
Epilepsy Foundation, www.epilepsyfoundation.org.
Chapter 9
When Half a Brain is Better than One:
Recurrent Seizures
Betsy looked just like any other child as she sat between her parents in the waiting
room. She greeted the examiner with a polite smile and a shy hello. As she walked
down the hall to the testing room, her right arm tended to hang at her side, not
moving like the left. Her gait was awkward. These were the only visible signs that
Betsy was very different than other children.
No one suspected when Betsy was born that her brain had developed in an
atypical manner. During infancy, her parents noticed that she was not using her
right arm. Her doctor thought that she might have damaged a nerve in the shoulder
area at birth and recommended occupational therapy. The occupational therapist
found that muscle control in Betsy’s right leg was also abnormal. Magnetic
resonance imaging (MRI) demonstrated that the left side of her brain had a cleft,
a deep valley in the brain’s surface rather than the normal wrinkles. The cells
around the cleft were disorganized, a brain malformation. Physical and occupation-
al therapy were provided in her home until she was 3 years of age and then
continued through an early childhood special education program. Speech therapy
was added when it became clear that Betsy had difficulty making some speech
sounds (articulation problems). Betsy’s parents were pleased with her progress.
When Betsy was aged 4, she experienced another challenge. She developed
epilepsy. Initially, seizures occurred during sleep and involved drooling, lip
smacking, and movement of her arms and legs. Numerous medications, as well as
a ketogenic diet, failed to control her seizures. Betsy continued to make good
progress in developing cognitive skills, so her parents adapted to her seizures.
Seizures often evolve, changing over time. Betsy developed daytime seizures during
which the muscles on her right side would suddenly stiffen, causing her to fall. Because
of the risk for injury, she had to be closely supervised all the time. She was provided
with a one-to-one aide in school. One of her parents was always with her at home. She
learned to ask permission before doing anything. Her parents or her aide could then
determine whether what she wanted to do was ‘‘safe.’’ At this point, seizures were
significantly interfering with Betsy’s social development and physical safety.
Betsy’s parents faced a very difficult decision. The only hope of controlling her
seizures and allowing her to live a normal life was neurosurgery. For some children

78 L.B. Blackburn
with epilepsy, surgery involves removal of only a small portion of the brain. For
Betsy, a hemispherotomy was recommended. When she was 5-years old, a large
portion of the malformed left hemisphere was removed, and the nerves allowing
communication between the left and right hemispheres of the brain were severed.
Betsy would function using only the right side of her brain (Figs. 9.1 and 9.2).
Betsy’s surgery was successful; the seizures were controlled. Although she took
multiple medications prior to surgery, most were tapered over the year after
surgery. When Betsy arrived for assessment 1 year later, she was taking only one
Fig. 9.1 The MRI scans demonstrate the extent of tissue removed during a hemispherectomy,
specifically a left hemisphere resection (Note: MRI right is left and left is right). Scan A reflects
removal of the top of the brain looking down on brain structure
Fig. 9.2 Scan B reflects a cross section created by removal of the front portion of the brain,
looking into the brain
9 When Half a Brain is Better than One: Recurrent Seizures 79
antiepileptic medication to support seizure control. Betsy was referred for neuro-
psychological assessment to assess the impact of surgery and her change in seizure
control on her cognitive development. Her parents wanted to get a better picture of
her strengths and weaknesses to assist them in setting expectations for her at home
and at school. For most children undergoing epilepsy surgery, results are compared
with presurgical testing to determine whether surgery changed the child’s skill
pattern or rate of development. Betsy had been too ill prior to surgery to participate
in testing. Postsurgical testing would only provide information about current skills
and would not tell Betsy’s parents if her skill pattern had changed.
Although test performance is one important source of information in neuro-
psychological assessment, information is also gained from other sources. Betsy’s
parents were interviewed and completed questionnaires, her teacher completed a
rating scale, her Individualized Education Plan (IEP) was reviewed, and her behavior
was observed as she performed tasks and played.
Her parents reported that Betsy’s expressive language skills had improved
following surgery. Her production of speech sounds improved, making her easier
to understand, and her sentence length increased. Her ability to concentrate also
improved. Her parents had been warned that her hemiparesis might worsen, but
Betsy showed no change in her ability to use her right arm or leg. It appeared that
her brain had shifted control of her right arm and leg to the right hemisphere early in
her development. During testing, Betsy was observed to use her right arm to anchor
materials, such as holding down her paper when drawing. Because her right fingers
moved in an approximation of what the left hand was doing (mirror movements),
she still was unable to use both hands together in a coordinated fashion.
Surgery did affect a nerve involved in the coordination of eye movements. Betsy’s
parents reported that she had improved, but her behavior during testing suggested
that she continued to experience some problems in this area. In the waiting room,
Betsy was observed to continue to have problems with depth perception as she
attempted to negotiate stairs carpeted in the same color as the surrounding floor.
She also had difficulty scanning lines of material and needed the examiner to use a
sheet of paper to block material below the line she was scanning. Her surgery also
created a visual field deficit. Betsy could see things immediately in front of her and
to her left, but she needed to turn her head or move her eyes to the right to see things
off to the right. Her parents noted that she would occasionally forget to look to the
right and then bump into things on her right side. During testing, it was necessary to
position test materials so that the right edge of the materials lined up with the
midline of her body to ensure that she saw all the response options on the right side
of the page. The examiner would also use gestures to draw attention to these options
when Betsy became overly focused on the left half of the page.
Betsy’s parents reported that the years of needing to wait for permission before
acting seemed to have taken a toll on her social functioning. Betsy continued to be
hesitant to act in new situations, looking to adults for guidance. Although her
parents indicated that Betsy was becoming more spontaneous in new situations,
her teacher continued to describe her as somewhat passive in the classroom. Betsy’s
behavior during testing was consistent with this description. In the waiting room,
80 L.B. Blackburn
Betsy would look to her parents before approaching and playing with any of the
toys available to her. This behavior did not change as she became familiar with the
testing setting.
Test Results
Initially Betsy was very shy with the examiner, but she became more interactive as
she gained comfort in the testing setting. By the end of the morning, Betsy was
initiating conversation with the examiner, relating stories about her family and her
experiences. Her manner of telling stories was quite tangential and disorganized.
She would abruptly change topics and relate the ending of a story before providing
enough information to understand what had led up to the ending. Although it was
possible to understand what Betsy meant to say, she would often omit sounds (e.g.,
‘‘pooter’’ for ‘‘computer’’; ‘‘welve’’ for 12). One might logically conclude that her
articulation problems were a result of her brain malformation, but her parents noted
that other family members had similar problems with articulation during childhood.
During testing it was also noted that Betsy had difficulty inhibiting well-learned
patterns. When shown a picture of an arrangement of dots that she was to remem-
ber, she insisted on counting the dots, paying little attention to their relative
positions. On a task where she was told to put a slash mark through her answer,
she circled her answer. Her parents reported that most school worksheets involve
circling answers. On tasks involving yes/no questions, she tended to only respond
yes. This continued use of a response even when one is aware that it is no longer
appropriate is referred to as perseveration.
Betsy had difficulty understanding verbal directions during testing. She would
sit quietly, offering no response when confused. Once directions were repeated,
rephrased, or demonstrated, Betsy got right to work.
At the time of evaluation, Betsy was attending a regular kindergarten classroom.
According to her IEP, she was making satisfactory progress in reading and math but
had a difficult time sequencing events to relate a story. Classroom modifications
included preferential seating, shortening assignments, providing extra time to
complete tasks, and repeating or modeling directions to support understanding.
She was receiving speech therapy with IEP goals focused on her articulation
problems. She no longer received direct occupational therapy services, but the
occupational therapist at her school continued to monitor her progress. Her IEP
indicated that no additional tutoring was necessary to support her learning of basic
academic skills. Performance on the Wide Range Achievement Test – Fourth
Edition, given as part of her neuropsychological assessment, confirmed the pres-
ence of age-appropriate academic skills (Table 9.1).
Betsy’s test results highlighted the unevenness of her skill development. Al-
though she was doing remarkably well in some areas, she had significant weak-
nesses in others. Her ability to reason using language fell solidly in the average
range. Visually-based reasoning skills were less well developed (borderline range).
Betsy relied on language, labeling the materials and talking herself through pro-

Wide Range Achievement Test – Fourth Edition Scorea Percentile
Word reading 91 27th
Spelling 87 19th
Math computation 88 21st
a
blems when visual materials were presented. Further testing of her ability to
interpret visual information was conducted.
Betsy was able to accurately integrate details into a meaningful whole percep-
tion, as well as visually match material on the basis of size and spatial orientation.
Her average performance on these measures demonstrated that she could accurately
process visual material as long as she was focused on a single object or was
choosing from only a few clearly distinct response options.
Her low scores on visually based reasoning tasks appeared to reflect problems
with effectively scanning and integrating large amounts of visual information,
discriminating relevant from irrelevant details, and sequencing actions to reproduce
what she had seen.
Her achievement on measures of receptive vocabulary (associating labels with
pictures) and measures of expressive vocabulary (word definition, object labeling)
fell in the average range (Table 9.2). She was able to understand language concepts
in directions that sequenced and defined actions. Her sole low score occurred on a
task where she had to keep in mind the content of an entire sentence while scanning
four detailed pictures to find the picture representing the sentence’s meaning.
Visual scanning skills and verbal memory capacity appeared to play a role in her
low achievement on this task.
Betsy’s scores on the information subtest from the Wechsler (Table 9.3) and scores
from the Wide Range Achievement Test – Fourth Edition (Table 9.1) demonstrated
that Betsy was able to learn material through repetition. An attempt was made to
quantify her memory skills through formal tests. This attempt was met with limited
success. Betsy rapidly became bored and/or frustrated with memory games. Her
low scores reflected her difficulty with sequencing verbal information for relating
an event (stories and sentences) and her focus on counting dots rather than attending
to spatial location. Her tendencies to perseverate on a yes response when given true/
false questions on material invalidated attempts to measure recognition of faces,
words from a list learning task, and story content. The results of formal memory
testing were felt to be a poor estimate of her functional memory capacity.
Adaptive behavior refers to the everyday application of language skills, fine
motor skills, and gross motor skills. Betsy’s parents completed a questionnaire
rating her skills. Social skills include play skills and the knowledge of good
manners. Her average score reflected her age-appropriate range of play interests,
ability to maintain play with friends, and knowledge of manners. Her lower
ratings in conceptual skills reflected her continued delays in the development of
articulation skills and her limited ability to relate an event. Practical skills include
82 L.B. Blackburn

Kaufman Assessment Battery for Children – Second Edition
Gestalt closure (14) 91st
Woodcock Johnson Psychoeducational Battery – Third Edition
Block rotation 100 50th
Beery-Buktenica Developmental Test of Visual-Motor Integration 100 50th
Peabody Picture Vocabulary Test – Fourth Edition 101 53rd
Clinical Evaluation of Language Fundamentals – Fourth Edition
Expressive vocabulary (9) 37th
Sentence structure (4) 2nd
NEPSY
Comprehension of instructions (7) 16th
Verbal fluency (11) 63rd
Dot locations
Learning (6) 9th
Stories
Immediate recall (6) 9th
Word list
Learning (1) <1st
Woodcock Johnson Psychoeducational Battery – Third Edition
Memory for names
Learning 79 8th
Memory for sentences 57 0.2nd
Adaptive Behavior Assessment System – Second Edition
Conceptual 80 9th
Social 93 32nd
Practical 48 <0.1st
General adaptive composite 67 1st

Wechsler Intelligence Scale for Children – Third Edition Score Percentile
Information (11) 63rd
Vocabulary (8) 25th
Word Reasoning (8) 25th
Block Design (6) 9th
Matrix Reasoning (6) 9th
Picture Concepts (7) 16th
Symbol Search (7) 16th
Verbal IQ 93 32nd
grooming and dressing as well as helping out with household tasks. In part, delays
in this area reflected the challenges created by her hemiparesis. For Betsy to be
independent, she needed to learn one-handed approaches to tasks most children do
with two hands. However, her delays in this area also reflected the lingering effects
of the year in which it was unsafe for Betsy to do things on her own. Betsy’s parents
were encouraged to reevaluate her need for them to do many things for her that she
could now safely do independently.
Betsy’s school program was reviewed in the context of test findings. Test results
suggested that Betsy was receiving appropriate classroom accommodations. It was
recommended that these accommodations be continued. Betsy had done well in
kindergarten, and it was recommended that her IEP be expanded to support
continued success. Given the difficulty she had scanning, tracking, and dealing
effectively with complex detailed visual information during testing, her parents
were encouraged to talk with Betsy’s ophthalmologist to determine whether occu-
pational therapy services would be helpful in developing these skills. It was also
recommended that the occupational therapist monitoring her school progress con-
sult with her classroom teacher regarding modification of worksheets and use of
adaptive devices (e.g., line guide or shield exposing one line at a time [work
window]). It would be important that her teacher avoid ‘‘high interest worksheets’’
where an academic task is embedded in an interesting background. Preferential
seating was recommended, placing Betsy at the right side of the classroom, so that
most of the classroom would be in her intact left visual field.
Given Betsy’s need for frequent repetition of directions during testing, her
teachers were encouraged to monitor her understanding of classroom directions
by having Betsy demonstrate what she should do before working independently.
Her parents were also encouraged to monitor Betsy’s development of skills, such as
being able to copy material from the blackboard (visually tracking between paper
and blackboard) and to maintain column alignment in math as multidigit numbers
are introduced. Because of her tendencies to perseverate, her parents were also
warned that she might have difficulty shifting between math operations, for exam-
ple, if she is asked to complete a page involving some addition and some subtrac-
tion problems. Changes in directions for recurring classroom tasks may also be a
problem for Betsy (e.g., being told to underline answers instead of circle them).
It was explained to Betsy’s parents that she was at risk for greater problems in
learning as she progressed through school. Although her overall intellectual ability
fell in the low average range, she demonstrated a pattern of doing well on tasks
involving single facts and doing less well when needing to integrate facts and
flexibly apply them. Her progress to this point has reflected an intact ability to learn
individual facts when taught in a multisensory fashion (combining visual cues with
verbal description and hands-on experience). As Betsy progresses in school, the
84 L.B. Blackburn
amount of material expected to be learned at one time increases, repetition

decreases, and the emphasis shifts to learning through language. Although the
lower elementary grades maintain a primary focus on fact learning, expectations
to flexibly apply learning gradually increases. It was impossible to predict from the
current data whether or not Betsy would be able to keep up with all these changes.
Close monitoring of her development through repeated neuropsychological assess-
ment was recommended in 1 year to track her progress.
In addition to determining the need for adjustments in educational programming,
results from repeated testing would allow the neuropsychologist to begin to esti-
mate Betsy’s developmental trajectory, that is, her rate of cognitive growth. This
information could be used to help her parents set appropriate long-term goals for
her. In addition, it was hoped that Betsy would be better able to tolerate the
challenges of memory testing, allowing for a better estimate of her memory skills.
Betsy was a child whose developmental story was in the early chapters. It was
clear that her parents made the right decision. Betsy’s frequent seizures and her high
risk for injury would have significantly limited her development of cognitive skills
and social skills. Betsy was doing a remarkable job of learning, using only one
hemisphere of the brain. Only time would tell if half a brain would provide her with
a normal life, but clearly it already had provided her with a better life.
Epilepsy A diagnosis of epilepsy is given when a person has experienced two or

more unprovoked seizures. Unprovoked seizures are seizures that occur without an
immediate cause such as high fever, brain infection, or brain injury.
Gait The pattern of movement made by the arms and legs when walking.
Hemispherotomy A neurosurgical procedure in which a large portion of one hemi-
sphere of the brain is removed and the remaining connections between the two
hemispheres are severed.
Hemiparesis A reduction in or loss of muscle control is referred to as paresis. A
hemiparesis involves changes in muscle control for one side of the body (arm and
leg). Muscles may become limp (flaccid) or may show an increase in muscle control
(spastic).
Ketogenic Diet A very high fat, carbohydrate-restricted diet effective in reducing
seizure frequency in some individuals with epilepsy. The Atkins Diet, made
popular as a method of weight loss, is a less restrictive form of this diet. The Atkins
Diet has also been shown to reduce seizure frequency for some young adults with
poorly controlled epilepsy.
Mirror Movements Involuntary movements in one hand that approximate the
voluntary movements carried out by the other hand.
Perseveration The repetition of a response even when the person making the
response is aware at some level that it is no longer appropriate. Perseveration
may take the form of repeating an action or procedure such as adding all the
problems on a page containing both addition and subtraction. Perseveration may
take the form of a verbal response, such as repeatedly asking a question even though
it has been answered.
Seizure A burst of abnormal electrical activity in the brain that produces an
observable change in consciousness and/or behavior. This burst may involve the
whole brain (generalized seizure) or only a small area of the brain (partial seizure).
Seizures may present as sudden sensations (e.g., a funny taste, feelings of fear),
staring, semipurposeful movements (e.g., picking at clothing), or as abnormal
movements (e.g., stiffening, jerking).
Visual Field Deficit A limitation in peripheral vision. Visual fields are divided into
four quadrants (upper/lower for right and left). Deficits may involve one side (e.g.,
all information to the right or left) or one quadrant (e.g., upper right or lower right).
A person can compensate for this deficit by moving the eyes or turning the head.
References
Basheer, S. N., Connolly, M. B., Lautzenhiser, A., Sherman, E. M., Hendson, G., & Steinbok, P.
(2007). Hemispheric surgery in children with refractory epilepsy: Seizure outcome, complica-
tions, and adaptive function. Epilepsia, 48, 133–140.
Griffiths, S. Y., Sherman, E. M., Slick, D. J., Eyrl, K., Connolly, M. B., & Steinbok, P. (2007).
Postsurgical health-related quality of life (HRQOL) in children following hemispherectomy
for intractable epilepsy. Epilepsia, 48, 564–570.
Pellock, J. M., Dodson, W. E., Bourgeois, B. F. D., Nordli, D. R., & Sankar, R. (2007). Pediatric
epilepsy: Diagnosis and therapy (3rd ed.). New York: Demos Medical Publishing.
Pulsifer, M. B., Brandt, J., Salorio, C., Vining, E. P. G., Carson, B. S., & Freeman, J. M. (2004).
The cognitive outcome of hemispherectomy in 71 children. Epilepsia, 45, 243–254.
Blackburn, L. B. (2003). Growing up with epilepsy: A practical guide for parents. New York:
Demos Medical Publishing.
Freeman, J. M., Freeman, J., & Kelly, M. (2000). The ketogenic diet: A treatment for epilepsy (3rd
ed.). New York: Demos Medical Publishing.
Freeman, J. M., Vining, E. P. G., & Pillas, D.J. (2002). Seizures and epilepsy in childhood: A guide
for parents. Baltimore: Johns Hopkins University Press.
Chapter 10
Pathological Left-Handedness: Stroke
and Seizures
Elizabeth N. Adams
Lily weighed 7 pounds, 6 ounces at birth and, apart from mild jaundice, was a
healthy infant. Her proud parents were optimistic about their firstborn’s new life
and, if asked, would have said that they did not expect her to have medical problems,
because no one on either side of the family had any chronic medical conditions.
When Lily was around 2 years of age, her parents observed that she seemed to
prefer her left-hand for tasks such as coloring and eating. They were somewhat
surprised by this because they knew that handedness tended to be a hereditary trait
and were not aware of any relatives who were left-handed. Then, as their daughter
started preschool, Lily’s parents observed that her left-hand preference seemed
particularly pronounced. In fact, it seemed as though Lily were not using her right
hand much at all. Curiosity led to closer observation, which revealed a subtle
dragging of her right leg with a tendency to ‘‘throw’’ it outward when she walked
and ran.
Lily’s parents sought advice from their pediatrician, who referred their daughter
to a neurologist for an evaluation. The neurologist assessed the strength and
mobility of Lily’s arms, hands, and legs and told her parents that she had a mild
right hemiparesis (i.e., weakness or limited use of the right side of the body). The
neurologist then ordered two brain imaging studies, which showed that, unbe-
knownst to her parents or other treating providers, Lily had experienced an episode
of bleeding on the left side of her brain before birth (i.e., an intrauterine cerebral
vascular accident (CVA), commonly known as a stroke). Because the left side of
the brain, which controls the movements of the right side of the body, was damaged,
Lily demonstrated an early preference for using her left hand. Apart from this,
Lily’s development had been normal to this point. At the expected times she
reached milestones in language development, including use of first single words,
vocabulary increase, and use of two to three words in phrases.
Shortly after Lily turned 3 years of age, her parents observed a recurring
behavior lasting several seconds during which she suddenly turned her head to
the right and began shaking her right arm and leg. Concerned and wondering if this
had anything to do with the intrauterine stroke, they took her to see the neurologist
again. The behaviors were described as seizures, and an electroencephalogram

88 E.N. Adams
(EEG) showed that they were indeed coming from the part of the brain where the
intrauterine stroke had occurred. Lily was prescribed an antiepileptic medication to
control the seizures. She did not have another seizure for 5 years, but then at the age
of 8 years the same set of recurring behaviors (i.e., seizures) was observed and the
frequency increased. Despite attempts to control the seizures with medication over
several years, Lily continued to have them. The neurologist explained to Lily’s
parents that after several unsuccessful medication trials, another antiepileptic
medication was quite unlikely to be effective in stopping the seizures. The next
best option would be to surgically remove the portion of her brain from which her
seizures were originating. Lily was age 13 years at this time.
Thus, Lily’s neurologist began to consider her as a possible candidate for
epilepsy surgery. As was explained to her parents, surgical candidacy typically
involves a several-month process of collecting and integrating data from various
sources, including structural and functional brain imaging, long-term video-EEG
monitoring, and neuropsychological testing. The neurologist referred Lily to the
neuropsychology clinic in the hospital for a presurgical evaluation of her cognitive
and behavioral functioning. The evaluation was specially designed to provide
information that would be beneficial to the neurologist in planning for surgery as
well as to Lily and her family in continuing to support her academic and psychoso-
cial development through her challenging medical condition.
At the time of the neuropsychological evaluation, Lily was 14-years old and in
the seventh grade at a middle school, where she received special education support
for all academic subjects. She also was receiving occupational therapy services to
address her right-sided hemiparesis. Lily was described by her parents as being
immature. Although she was seen as a good-natured, kind girl who was outgoing
and wanted to fit in, she had difficulty because of social awkwardness (e.g.,
restricted interests, lack of social awareness, and difficulty interpreting nonverbal
and other subtle cues). Nevertheless, Lily did have a few friends at school and
generally was accepted by the other children in her class. Lily’s parents also
reported that she had difficulty sustaining attention in most situations and was
easily distracted.
Test Results
The neuropsychological evaluation consisted of a review of available medical and

academic records; interviews with Lily and her parents; and administration of tests
of intellectual abilities, higher executive functions, sustained attention and inhibi-
tion of impulsivity, selected language and visual-spatial functions, memory func-
tions, motor and tactual-perceptual functions, and academic achievement.
Lily arrived on time for the evaluation, with her parents. She was a pleasant
teenaged girl, who demonstrated obvious right-sided hemiparesis (i.e., rigid gait
favoring the left side and limited right hand manual motor movement). Lily was
able to talk with the examiner fluently and without errors. However, the manner in
which she spoke resulted in the content of her speech seeming tangential and circum-
10 Pathological Left-Handedness: Stroke and Seizures 89
locutious. That is, she demonstrated word-finding difficulties and often described
characteristics of the word or concept she was attempting to talk about without
addressing the target word or concept directly. Lily demonstrated an extremely
slow rate of mental processing, especially noticeable on two tasks (one oral, one
written) that required her to formulate a response with appropriate content in
response to a question. Her approach to these tasks was very deliberate, and the
content of her responses was appropriate and well thought-through. Thus, despite
her extremely slow processing, when given ample time she successfully answered a
set of quite challenging questions. Lily remained polite and cooperative throughout
the entire evaluation. She was noticeably distractible but was easily redirected
to the task at hand. In general, Lily’s compliance was excellent throughout
the duration of the assessment; her effort and cooperation during testing were
viewed as adequate to ensure that the reported results were reliable and valid
(Tables 10.1–10.3).
Lily’s test results revealed intellectual functioning in the mildly cognitively
deficient range overall. The majority of the test scores in her neuropsychological
profile fell within or below this broad range of impairment. Within this range, her
performance on measures of verbal reasoning, verbal working memory, and dis-
crete language functions was slightly less impaired than on measures of nonverbal
reasoning and visual-spatial functions. In addition, her memory for verbal material
consistently was stronger than her memory for nonverbal material.
Lily’s parents’ description of her attentional difficulties, also observed informally
during the testing, was corroborated by the finding of poor sustained attention on a
continuous performance task. Measures of higher executive functions including
speed and flexibility of mental processing and abstract problem solving yielded
significantly impaired scores. Academic achievement testing indicated relative

Wechsler Intelligence Scale for Scorea Percentile
Children – Fourth Edition
Full Scale IQ 63 1st
Vocabulary (3) 1st
Comprehension (6) 9th
Perceptual Reasoning Index 69 2nd
Block Design (4) 2nd
Digit Span (5) 5th
Letter-Number Sequencing (8) 25th
Coding (3) 25th
a
90 E.N. Adams

Woodcock Johnson Tests of Score Percentile Grade equivalent
Achievement – Third Edition
Letter-word identification 85 16th 4.8
Passage comprehension 70 2nd 2.7
Basic reading skills 88 20th 4.8
Letter–word identification 85 16th 4.8
Word attack 90 26th 4.7
Broad written language 71 3rd 3.5
Spelling 78 7th 3.8
Writing fluency 62 1st 2.8
Academic skills 79 8th 4.6
Academic applications 72 3rd 3.4
Academic fluency 72 3rd 3.8
strengths in basic skills (i.e., single-word reading, phonetic analysis, simple arith-
metic) and relative weaknesses in the application of those skills.
Although Lily’s fine motor speed, dexterity, and grip strength were significantly
impaired with her dominant left hand, she was completely unable to perform
measures of these functions with her right hand. The same pattern was observed
on testing of finger graphesthesis. Testing of finger localization demonstrated
bilateral finger agnosia that was more prominent with the right hand than with the
left hand.
The next step in the evaluation was to consider the results of the cognitive and
motor testing in conjunction with the findings available from other sources includ-
ing neuroimaging, prolonged video-EEG, and neurological examination.
Before discussing the case-specific findings, it is important to understand one of
the basic rubrics for interpretation of neuropsychological test data. Several decades of
scientific research have yielded a tenet that is especially applicable in assessment of
individuals with neurological conditions. In a typically developing brain, language,
verbal reasoning, and verbal memory typically are mediated by left hemisphere
structures, while visual-spatial organization, nonverbal reasoning, and nonverbal
memory are mediated by right hemisphere structures. A simplified form of this
general principle is ‘‘left-side language, right-side spatial.’’
When a neurological insult occurs in a mature brain (i.e., during late childhood
and beyond), this general principle applies and specific types of cognitive dysfunc-

Vigilance task (12 min)
Correct 54 <1st
Commission errors 76 5th
Symbol Digit Modalities Test 86 18th
Trailmaking Test
Part A 74 4th
Part B <1 <1st
Categories 45 <1st
Perseverative errors 34 <1st
Verbal Fluency Test (FAS) 74 4th
Animal Fluency 64 1st
Boston Naming Test 37 <1st
Multilingual Aphasia Examination
Token Test 106–107 67th
Sentence Repetition Test 62–72 1st–3rd
Benton Judgment of Line Orientation Test 32 <1st
Benton Facial Recognition Test 43 <1st
Wide Range Assessment of Memory and
Learning – Second Edition
Story memory (7) 16th
Recall (6) 9th
Recognition (6) 9th
Verbal learning (10) 50th
Recall (10) 50th
Design memory (4) 2nd
Visual learning (4) 2nd
Finger Tapping Test
Left hand 49 <1st
Trial 1 left hand 39 <1st
Trial 2 left hand 39 <1st
Grip strength
Left hand 77 6th
Finger Gnosis
Right hand <1
Left hand 19
Right hand (errors) <1st
Left hand (errors) <1st
Finger Graphesthesis
Left hand 44
Left hand (errors) <1st
(continued)
92 E.N. Adams

Achenbach Child Behavior Checklist
Parent Form
Anxious/depressed [63] 90th
Withdrawn/depressed [60] 84th
Somatic complaints [67] 96th
Social problems [84] >97th
Thought problems [72] >97th
Attention problems [81] >97th
Rule-breaking behavior [62] 89th
Aggressive behavior [60] 84th
Teacher’s Report Form
Anxious/depressed [71] >97th
Social problems [68] 97th
Attention problems [68] 97th
Aggressive behavior [65] 93rd
tion can be expected on the basis of the site of the insult or damage. However, when
the insult occurs before birth or during early infancy, the cognitive outcome is not
as predictable. Because the sets of structures that work together to mediate language
and spatial thinking abilities are not fully differentiated in these early stages, we
typically do not see the expected pattern of deficits following brain compromise
that can be expected when a more mature brain is damaged. This case provides a
helpful example of what can happen when the expected pattern is changed because
of timing and location of neurological insult.
Lily’s left-hemisphere stroke occurred before birth, thereby impacting the
subsequent trajectory of her brain development. As a consequence, she does not
demonstrate the typical pattern of cognitive dysfunction (i.e., impaired language
and intact visual-spatial functions) that would be expected following a later-onset
left-hemisphere injury. Rather, Lily’s cognitive testing reveals an intriguing pattern
characterized by more severely impaired visual-spatial than language functions and
more severely impaired nonverbal than verbal memory functions. These findings
are the opposite of what would be expected following a left-hemisphere insult in an
older individual with a more mature brain. Together with her right-sided hemipar-
esis, Lily’s neuropsychological profile is consistent with what has been termed a
‘‘pathological left-handedness’’ syndrome.
Pathological left-handedness is a pattern of left-handedness without family history
of left-handedness, relatively poorer right hand motor function along a continuum of
severity, and better developed language than visual-spatial functions. It is seen as
preceded by an early left-hemisphere insult (or possibly by a developmental anomaly
of or within the left cerebral hemisphere). Like Lily, some people with the syn-
drome may develop seizures originating from the left hemisphere.
This syndrome is consistent with a construct of language development that
remains partially theoretical yet is commonly accepted. Within this theory, lan-
guage is the dominant cognitive function because it is most integral to adaptive
functioning and participation in our highly language-dependent world. As such, the
dominant (left) hemisphere is primed even before birth to house language functions.
This hemisphere is particularly good at processing discrete pieces of specialized
information in a temporal manner, aiding language use, and also is the hemisphere
with the greatest degree of control over finely coordinated motor movements such
as those required by the speech output system.
When an early left-hemispheric insult is sufficient to compromise the development
of language in the left hemisphere, which is the dominant hemisphere for approxi-
mately 94–96% of people, theory with support from clinical research suggests that
the brain reorganizes to delegate language development to the more intact structures
in the nondamaged (right) hemisphere. Because this process of reassignment of
language functions to the right hemisphere often seems to take place at the expense
of the full development of the visual-spatial functions that ordinarily would be
represented in that hemisphere, it is referred to as crowding. Coincident with this
process of language representation moving to the right hemisphere, thus establishing
the dominance of this hemisphere, is the development of left-handedness without
family history of such. This essentially provides behavioral evidence of the level of
severity of the early left-hemisphere insult, which was marked enough to cause this
shift of hand dominance counter to the odds of heritability.
The results from this evaluation were provided to Lily’s neurologist, who
integrated the data with other clinical and laboratory findings to ensure optimal
understanding of her brain functioning as part of her candidacy for resective brain
surgery. In addition, several recommendations were offered to Lily’s family that
focused on decision-making about school programming, suggested accommodations
for this girl in the school setting, and improvement of her psychosocial adjustment in
the context of a chronic medical condition and anticipation of surgery.
Lily’s academic skills represented a relative strength in her overall profile. This
was discussed with her family and explained as being likely related to her strong
verbal memory as well as to her supportive family and educational environments,
which were encouraging and challenging her to continue learning. In planning
Lily’s curriculum, school personnel were advised to consult her test scores in
order to establish an appropriate starting point for her in each academic domain.
In addition, it was noted that Lily’s deficit in higher-order conceptualization was
expected to translate into difficulty with the applied aspects of academic skills.
Similarly, her slowed processing speed, combined with her known fine motor
difficulties, was expected to result in less efficient academic fluency. Thus, it was
emphasized that Lily’s actual school performance could represent an underestimate
of her knowledge of basic academic skills.
Recommended school accommodations for Lily included shortened assign-
ments, extended time on tests, and use of a word processor for writing assignments.
94 E.N. Adams
Several compensatory strategies were also suggested. For example, Lily was
encouraged to use her strength in rote memory by mastering basic skill sets (e.g.,
analytic phonics, math facts, spelling rules). Then, when she had demonstrated
adequate knowledge in a basic skill set within a particular academic domain, Lily’s
teachers and parents were encouraged to challenge her to apply the skills further or
to use them fluently. Finally, Lily’s parents were given several sets of suggestions
for managing her attentional difficulties, as well as contact information for psy-
chologists who could provide social skills training and therapy for Lily in light of
her parents’ concerns about her inattention and social immaturity.
It was anticipated that, with the appropriate supports and accommodations,
Lily’s prognosis would be positive. She demonstrated a relative strength in verbal
memory, which often serves an important purpose in the process of acquiring new
skills and consolidating new to-be-learned information. Also, Lily had a supportive
family environment.
Electroencephalogram A diagnostic test used by neurologists to assess electrical

activity in the brain. It is a noninvasive procedure that involves temporarily gluing
sensors to the scalp; the sensors send output to a computer, which shows on a graph
the pattern of electrical discharges in the corresponding cerebral areas. Abnormal
patterns are sometimes associated with seizures.
Hemiparesis Weakness or limited use of one side of the body, usually caused by a
neurological injury in the contralateral hemisphere.
Intrauterine Stroke A cerebral vascular accident (CVA), that is, an episode of
bleeding in the brain, which occurs before birth.
Jaundice A condition occurring during the postnatal phase and sometimes extending
through early infancy that is caused by elevated levels of bilirubin (i.e., ‘‘hyperbili-
rubinemia’’). Severe jaundice can cause bilirubin encephalopathy, which has been
shown to have effects on neurodevelopment, and sometimes ongoing cognitive
deficits are observed. Mild jaundice is quite common and most often benign.
References
Dodrill, C. B., & Matthews, C. G. (1992). The role of neuropsychology in the assessment and
treatment of persons with epilepsy. American Psychologist, 47, 1139–1142.
Foldvary-Schaefer, N., & Wyllie, E. (2003). Epilepsy. In C. Goetz (Ed.), Textbook of clinical
neurology (2nd ed.). Philadelphia, PA: Saunders.
Hertz-Pannier, L., Gaillard, W. D., Mott, S. H., Cuenod, C. A., Bookheimer, S. Y., Weinstein, S.,
et al. (1997). Noninvasive assessment of language dominance in children and adolescents with
functional MRI: A preliminary study. Neurology, 48, 1003–1012.
Miller, J. W., Dodrill, C. B., Born, D. E., et al. (2003). Atypical speech is rare in individuals with
normal developmental histories. Neurology, 60, 1042–1044.
Strauss, E., Satz, P., & Wada, J. (1990). An examination of the crowding hypothesis in epileptic
patients who have undergone the carotid amytal test. Neuropsychologia, 28, 1221–1227.
Woods, R. P., Dodrill, C. B., & Ojemann, G. A. (1988). Brain injury, handedness, and speech
lateralization in a series of amobarbital studies. Annals of Neurology, 23, 510–518.
Ellis, N., Upton, D., & Thompson, P. (2000). Epilepsy and the family: A review of current
literature. Seizure, 9, 22–30.
Epilepsy Foundation. (2005). Answer place: Introduction, http://www.epilepsyfoundation.org/
answerplace/quickstart/forparents/index.cfm.
Chapter 11
Moving Forward: Psychotherapy
with a Youth After Brain Injury
Mary C. Kaven
Shaun was sitting quietly on the couch in the dayroom of the residential treatment
center (RTC), listening intently to a book on tape with a headset while his peers
were talking or playing games. Just under 5 ft and 100 lbs, with curly blond hair and
fair, even facial features, he looked more like his 12-year-old peers on the unit than
his chronological age of 15 years. Shaun was pleasant and cooperative in conversa-
tion. His vocabulary was quite good, and he talked about the Harry Potter books he
had heard on tape. He was open about not being able to read or tell time. He could
read short words and the numbers on a digital watch, but he did not understand what
time his activities and meals took place. He knew his colors, could count aloud into
the double digits, and print his first name with difficulty. He asked for help in
constructing an animal from a novel building set he saw on a shelf, but he knew
what looked realistic and what did not. He denied having any auditory or visual
hallucinations, and there was no mention of such in his medical record. He admitted
being very picky about food and having trouble ending activities and said he wanted
help to tell his schoolteacher how to understand him and help him learn. In a session
with his parents, Shaun was teary, more regressed, and oppositional. He told his
parents that he does not belong in this world and should die.
Shaun had already received lengthy psychiatric treatment in the partial hospital
program, followed by acute care for longstanding problems with aggressive out-
bursts, oppositionalism, suicidality, impulsivity, problems with peers, and learning
problems. He had a history of seizures. Now on two mood stabilizers, among other
medications, Shaun was having relatively fewer seizures but had not made enough
progress to ensure safety at home and school. His behavior in the RTC was similar to
what his family had experienced at home and what was reported at school. It was
very difficult to get Shaun out of bed and ready for school in the morning. He cursed
at staff and sometimes threw things at them. One morning he punched a staff
member and held a pencil to the staff member’s chest. During other times of the
day, Shaun sometimes kicked a peer—even his closest friend—or hit staff when he
was frustrated. With each incident, Shaun was remorseful afterwards and apolo-
gized, but he felt worse about himself and more depressed. Consequences of earning

98 M.C. Kaven
or losing toys and privileges did not seem to control his behavior even if they were
important to him. It was difficult for Shaun to think ahead more than a few hours
and, therefore, difficult for him to make any positive changes in his behavior.
It was generally agreed that Shaun’s intractable seizures, neuropsychological
problems, and emotional and behavioral dysregulation were primarily a conse-
quence of brain injury secondary to viral encephalitis contracted on a family trip
shortly after his first birthday. Until that time, his development had been normal. He
was born 10 days past term without any complications or exposure to alcohol or
drugs, and he was reportedly an easy, content, happy, and cuddly infant. He had
begun to walk and speak his first words before he developed influenza-like symp-
toms and a seizure on the trip, which escalated into status epilepticus. An electro-
encephalogram (EEG) suggested a low seizure threshold, with a seizure focus in the
right central region of the brain. He was hospitalized for 1 month, then again
for 2 weeks shortly thereafter, while his seizures were stabilized with medication.
He then received physical therapy and occupational therapy for residual left
hemiparesis and visual and auditory impairments. Shaun’s difficulties in hearing
and seeing resolved within a few months. However, he did not walk or speak again
until he was 2½-years old, and then he started speaking in sentences at the age of 4.
At the age of 8, a neuro-ophthalmologic exam suggested the presence of a bitem-
poral field defect and an incongruent left hemi-field deficit. Antiepileptic medica-
tions were eventually discontinued, and he was largely seizure free until age 13,
when seizures reoccurred regularly in clusters and included drop spells without
warning. No medication or combination of medications after the reemergence of his
seizures were totally successful in controlling them.
In first grade, Shaun was hyperactive, inattentive, impulsive, and aggressive to
peers. He was frustrated that he could not learn to read or write, and he craved
attention. He was placed in a special education class for children with traumatic
brain injury. At age 9, he was still aggressive and demanded help for daily self-care
such as dressing and toileting. He was violent to family members, particularly
toward his older brother when his brother tried to protect their mother from him
when he was acting out. Shaun stopped asking for help cleaning himself after
toileting at age 15, but he still could not tie his shoes. He continued to be opposi-
tional, impulsive, distractible, aggressive, and easily frustrated. In addition, Shaun
was frequently irritable, labile, and overtly depressed. His mother described him as
too dependent on her, saying, ‘‘he would like to sit on the couch and have me serve
him.’’ She realized that the family had been doing too much for Shaun for too long.
Following several urgent visits to the emergency department for threats of suicide,
uncontrollable sobbing, and barricading himself in his room, Shaun was admitted to
acute psychiatric care and then to the RTC for further help.
The primary treatment goals were for Shaun to handle his feelings safely,
without causing harm to himself or others, and to get up most mornings with
reasonable but not heroic effort from adults. To accomplish those goals, Shaun
needed help with depression and becoming more independent. To assist with
stabilization and treatment planning for emotional and behavioral dyscontrol,
Shaun received a neuropsychological evaluation, magnetic resonance imaging
11 Moving Forward: Psychotherapy with a Youth After Brain Injury 99
(MRI), and an updated EEG. The neurologist described Shaun’s seizure disorder as
having features of both complex partial and generalized tonic-clonic seizures. The
EEG showed a nonspecific abnormality in the right central/parietal region with
slowing, and a lesser degree of focal abnormality in the left temporal region. The
MRI was similarly abnormal, showing bilaterally symmetric high T2 signal inten-
sity, involving the inferior temporal lobes and posterior occipital and parietal lobes
and sparing the visual cortex. Focal gyral atrophy and gliosis in these regions were,
presumably, secondary to Shaun’s history of viral encephalitis as an infant.
Test Results
In previous evaluations at age 7 years, 10 months, and age 9 years, 0 months, Shaun’s
performance on intelligence and achievement tests had shown his verbal IQ to be in
the borderline range and his performance IQ as moderately deficient, with his
achievement scores similarly low, including particularly low arithmetic scores. So,
although Shaun had difficulty in all areas, he was significantly better on auditory
verbal tasks than on visual and constructive tasks. The neuropsychological battery at
age 15 was designed to update these previous findings and to provide more compre-
hensive views of his mental processing skills and adaptive functioning (Table 11.1).
Partly due to his psychiatric problems, Shaun’s adaptive skills were comparable
to that of a 5-year-old across motor, social and communication, personal living, and
community living domains. He still had significantly greater difficulty with visual
and performance tasks than auditory verbal ones, but he showed some important
changes since the age of 9 years. Although he still could not read, auditory verbal
Children—Fourth Edition Scorea Percentile
Vocabulary (8) 25th
Perceptual Reasoning Index 57 <1st
Block Design (4) 2nd
Picture Concepts (3) 1st
Matrix Reasoning (2) <1st
Working Memory Index 52 <1st
Digit Span (2) <1st
Letter-Number Sequencing (1) <1st
Processing Speed Index 50 <1st
Coding (1) <1st
Symbol Search (1) <1st
Full Scale IQ 54 <1st
a
100 M.C. Kaven
tests were now in the low average to average range compared with his same-age
peers. Expressive vocabulary was low average, receptive vocabulary average, and
the ability to express and comprehend both simple and complex language was low
average to average. Visual processing, reasoning, and problem solving were still
quite impaired, as were working memory and processing speed. He also showed
severe executive functioning deficits with initiating, sustaining, and shifting atten-
tion, maintaining set, and learning from feedback. Shaun’s ability to encode and
learn a list of words was in the low average to average range, although his source
memory was poor. His performance on sensory-perceptual and motor tests was
impaired as well, with a pattern suggesting relatively greater lateralized right
hemisphere dysfunction.
The pattern of test results indicated severe generalized cortical dysfunction and
bilateral dysfunction in specific neuropsychological abilities, with greater involve-
ment of the right hemisphere than the left. Shaun demonstrated relative sparing of
expressive and receptive verbal skills and verbal learning and memory. Because his
neuropsychological pattern coincidentally was similar to those described in the
previous chapters on epilepsy, further discussion of the evaluation is deferred to
focus on the nature and course of Shaun’s psychosocial treatment.
During the 4 months of residential treatment, Shaun received individual, family,
group, milieu, and experiential therapy, pharmacotherapy, and special education.
Shaun’s depression, oppositional behaviors, and aggression were seen to be related
primarily to negative self-comparisons to others, feeling stuck and conflicted about
growing up, and anxieties about his brother growing up and leaving the household.
After initial sessions with Shaun and his family, observing Shaun in the milieu, and
reviewing the neuropsychological evaluation, EEG, and MRI, the developmental
and contextual resources and challenges that would shape the direction and course
of treatment were identified.
Shaun was an attractive (nondysmorphic), young-looking teen with some good
verbal skills, a sense of humor, and the abilities to play and understand metaphor.
He was attached to his family, interested in social interaction, and capable of
learning and caring about other people. He had a history of showing remorse in
some situations. He demonstrated a range of affect, some ability to identify feelings
verbally, and no problems with reality-testing. He enjoyed listening to music and
books on tape (with earphones) for significant amounts of time. He remembered the
stories he heard, and he liked to make up poetic, personally expressive songs. His
family was intact and motivated to be supportive of him. Shaun’s parents encour-
aged him to develop his own interests and had a wide range of interests themselves
that they tried to share with him. But his parents were also weary and stressed
emotionally, mentally, and financially. Both parents had to work full-time and share
the extensive supervision and caretaking of Shaun, sometimes doing shift work to
manage. Shaun had no friends, and it was hard for his family to find time to help
Shaun learn to make those connections. Shaun’s older brother was getting ready to
graduate from high school and travel abroad for 6 months—an exciting but major
transition in the family structure.
Shaun was an adolescent struggling with growing up and becoming more
independent. When he was younger, he had tried hard to learn new things and
was proud of his accomplishments. He was now discouraged about his progress,
afraid of failing to be able to go out on his own like his older brother, and angry
about being dependent and lonely. Both his health and neuropsychological deficits
contributed to this struggle. He had trouble developing and holding on to a sense of
himself. Problems with memory, visual perception, sensory‐motor awareness, and
time made it difficult for him to encode, or recall, autobiographical memories,
let alone to integrate them into a coherent schema of a self. Likewise, Shaun had
difficulty with understanding the transformations that led to the future. His pro-
blems with visual memory and associative learning also interfered with his utilizing
any object to remind him enough of his parents and his home when he was not there
with them so he could feel secure. His sense of time was so impaired that, outside a
few hours, he could not feel certain when he last saw his family, when he would see
them next, or certainly what it meant for his brother to be gone for 6 months. Shaun
also could not be left alone or unsupervised because of his risk of falling unexpect-
edly from a seizure. Very limited access was available systemically to skilled
nonfamily members who could help Shaun explore his interests and the world
outside his home safely. When he was away from his family, he felt too insecure—
even devastated—and when he was with his family, he felt too dependent.
The neuropsychological testing had shown significant improvement in Shaun’s
verbal skills since he was 7-years old, compared with his same-age peers, which
was very encouraging. Not only had he continued to learn and improve skills to
maintain the same standard score as he got older; he improved enough to raise his
standard score by at least one standard deviation. Unfortunately, other skills did not
improve at the same rate. Because oral skills are so salient to others, it became easy
for others to misunderstand and overestimate what Shaun could do personally,
socially, and academically. At ages 7 and 9 years, Shaun struggled with nonverbal
tasks more than oral tasks. At age 15, this split was even wider. Children with
significantly higher verbal than visual-spatial scores often struggle with social
skills, feeling secure, handling novel situations, and meeting the expectations of
others. In general, this puts them at risk for acting out when they are younger and for
becoming depressed and anxious when older. Psychoeducation, including learning
to identify and label one’s own emotions, and social skills training are usually
helpful. Cognitive behavioral therapy can also be helpful, provided it is geared to a
cognitive and developmental level appropriate to the child’s skills. The marked
neuropsychological split between Shaun’s performance on verbal and nonverbal
tasks likely created a challenge to Shaun’s development. His marked improvement
in verbal skills suggested Shaun might be able to utilize more cognitive behavioral
strategies than expected for an adolescent with so many cognitive deficits. But this
was uncertain and would need to be tried.
102 M.C. Kaven
Behavioral interventions were already turning out to be of limited effectiveness,

probably for several reasons. Shaun was not sure of what he liked, and he was too
depressed to think that earning anything would make a difference. His memory for
events and his ability to anticipate something in the future were impaired. Taking
the program down a level developmentally, which often works, was still problem-
atic. Earning tokens or toys immediately, for example, did not link up well enough
or long enough to make a difference in getting him what he wanted or keep him
from acting out impulsively. Not being able to use behavioral interventions reason-
ably to shape Shaun’s behavior was a challenge.
Conflict over dependency is common in adolescents like Shaun who have
significant problems with executive functioning. A lot of external regulation is
needed at a time when adolescents usually move toward more autonomy. Self-
regulation was not a realistic goal for Shaun, and a more appropriate goal was to
actively cooperate with his caregivers to regulate himself. Instead of feeling that his
only choices were ‘‘Do what I want’’ and ‘‘Do what you want,’’ Shaun would
assume enough control and responsibility to say, essentially, ‘‘Both of us are
important. I want your help to consider what I want and what you want and to
make a good decision.’’ Such a shift represented a big step in developing perspec-
tive. Shaun needed to have a strong enough sense of identity as well as self-efficacy.
Finding a way to improve Shaun’s sense of time and understanding of calendars
would open up a lot of possibilities. Separations might be less devastating. Behavior
therapy techniques could become more effective. He might better understand how
his behavior affects others. He might be better able to encode, access, and integrate
his own memories. Many children with developmental problems have difficulty
telling time and understanding how to know what will happen when. Building on
strengths and trying out creative techniques usually helps to keep them oriented in a
meaningful way. But Shaun’s deficits related to understanding time were particu-
larly challenging. Neither verbal nor nonverbal explanations or metaphors were
helpful. Although Shaun had developed some significant verbal strengths, he also
had profound difficulties with working memory, sequencing, and perception. He
said, in fact, that he did not utilize visual imagery at all when using his imagination.
Considering the acuity of his behavior and out-of-home placement, this direction in
therapy was tabled in favor of others that were more productive.
Cognitive behavior therapy (CBT) can be very helpful in building mood regula-
tion skills in a wide variety of situations. One useful indicator of success in using
CBT to treat children with neuropsychological problems is their ability to rate the
intensity of their feelings, typically on a scale from 0 (not at all) to 10 (the most
intense). Children with less mature cognitive ability will typically describe a feeling
as all or none—10 or 0, with nothing in between. Being able to identify feelings and
rate their intensity on a graduated scale seems to be associated with greater
cognitive maturity, as well as ease in understanding how feelings can change,
reverse in intensity, or be mixed. With careful instruction and rehearsal, Shaun
was able to rate the intensity of his feelings on such a scale and to notice how the
intensity went down after collaboratively identifying and processing what was
bothering him. In addition to helping Shaun feel better, this exercise, with practice,
seemed to help him understand more about the process of change in general and be
more hopeful that things could change positively for him.
One particular challenge was managing Shaun’s reactivity, high levels of arous-
al, and slow recovery time. When upset, his resources for information processing
were limited. Shaun felt very frustrated when adults tried to get him to process
verbally about what was bothering him, which increased the risk for an aggressive
outburst. He found it helpful to focus first on calming down with the help of a
reassuring adult and a well-practiced, low-demand strategy. When Shaun clearly
confirmed that the intensity of upset was no more than 4 out of 10, he could engage
in more usual verbal CBT strategies to regulate his mood and solve problems.
Shaun was encouraged to notice and let adults know when he was just starting to
feel upset, so they could help him intervene early on and be more successful.
CBT was helpful in addressing several problem areas related to depression,
growing up, family relationships, and self-concept. For example, Shaun struggled
with both understanding and accepting growing up. He did not understand puberty
and that growing up was inevitable. It was as though he thought that if he refused to
be independent, he would therefore not really get older. Yet he envisioned that soon
he would be expected to leave home like his brother and support himself, which was
overwhelming. Understanding more about puberty and what level of independence
would be expected of him when he became an adult, along with information about
how he would be supported economically, allayed many of his anxieties. In another
example, Shaun said he expected his parents ‘‘to be there for him,’’ which they were
a reasonable amount of the time. But his understanding of what that meant was for
his parents to attend to him more as one would an infant or toddler. The state of
being grown up was hard enough to understand. The process of getting there step by
step was conceptually even harder, particularly with regard to himself.
Communicating more regularly with another person about his feelings with the
structure of a list of feelings and rating scales had an added benefit. ‘‘I feel’’
statements helped to create a personal perspective and sense of self. Shaun became
clearer about himself and more capable of taking responsibility for his actions. He
also began to construct the feelings of others. When he was very calm, he could
construct both his own feelings and the feelings of others at the same time. But he
could not tolerate these feelings emotionally. Capable of empathy, shame, and guilt,
he became overwhelmed with how his behavior affected others. Group exercises
that focused on cooperation, flexibility, empathy, and perspective-taking were all
helpful. Additional medications to help him manage his reactivity and level of
arousal were helpful as well.
Shaun then became more aware of how his own thoughts and feelings fluctuated.
He had already begun to construct his own perspective along with the perspective of
someone else and to look at them together. Now he was able to look at himself
under two different circumstances and to compare them. Shaun described feeling
like a ‘‘split personality,’’ understanding that to be metaphorical. He said he usually
felt weak and vulnerable and as if he were 12-years old or older. In the destructive
mood, by contrast, he felt stronger physically, mentally, and emotionally and as
though he were 8 or 9-years old. He began to think of himself as feeling stronger on
104 M.C. Kaven
a regular basis and more like his current age. Importantly, he was developing a more
integrated sense of himself. This, in turn, seemed to facilitate his memory for
personal experience. Shaun was continuing to develop his verbal skills for social
and emotional purposes and used them gradually to mature.
Shaun was in residential care, while his brother embarked on a 6-month journey
overseas. Shaun could not understand what 6 months was or compare that time to
anything else, such as how long he had been in the hospital or how long it was
between birthdays. Shaun said his brother was the only young person who would
play with him, and he experienced the separation as a real loss. Shaun recalled the
many fights he had with his brother and talked about his intense anger at his brother
for those fights—something Shaun had done previously with little resolution. This
time was different. Shaun could now put more of the pieces on the table, stand back,
and look at them without decompensating. Shaun had a better sense of himself as an
agent—one who could take responsibility for his actions and tolerate it emotionally.
He could also construct and reflect on more than one perspective. Shaun now
accepted that he had been violent toward his family members. Finally, he could
understand and accept that his brother had not started the fights but had tried to
keep Shaun from hurting their mother and had intended to be protective instead of
hurtful.
Throughout the RTC treatment, Shaun was prescribed multiple medications to
target seizures, impulsive aggression, depression, reactivity, irritability, and inflex-
ibility. The benefit was sometimes marginal, and the side effects were significant,
leading to frequent medication changes. Unfortunately, some antidepressants
appeared helpful at first but soon became too activating and required discontinua-
tion. Other medications reduced aggression but increased depressive symptoms or
were too sedating, an even bigger concern for Shaun because of his already
significant risk of falling from uncontrolled seizures. However, even the discontin-
uation of some medications created opportunities to work on depression, posttrau-
matic stress disorder, mood regulation, and separation and individuation. These led
to developmental gains that were maintained overall. Shaun’s medications at his
discharge included two anticonvulsants and a neuroleptic.
Unlike many other young people with neuropsychological problems, Shaun
benefited more from the cognitive than the behavioral interventions. His difficulties
with visual perception, encoding context, and understanding time were particularly
challenging. But when medications helped to keep his reactivity and level of
arousal within a workable range, Shaun could collaborate in building on his verbal
strengths. This facilitated progress in the development of a more organized and
stable sense of self and more acceptance of the process of growing up and becoming
more independent. He was then more able to construct the perspective of other
family members. Most significantly, he could finally process and revise his under-
standing of the conflict in his relationship with his older brother and cope safely
with fewer medications.
The external systems issues were also challenging and unfortunately had a
negative impact on Shaun’s progress at several points. Imagining what services
he needed did not guarantee their availability. Shaun was discharged when his
aggression remitted, his mood and morning functioning improved, and outpatient
resources were adequate. Everyone hoped he would find it easier to improve his
self-care, self-regulation, and interpersonal skills and welcome growing up.
A neuropsychological evaluation can be valuable when treating a child or
adolescent with neuropsychological problems. However, like a topographic map,
the evaluation helps to prepare the neuropsychologist but does not tell where to go
or exactly how to get there. That is a journey best undertaken collaboratively with
the individual child and family. Sometimes a bridge expected to be there is out, like
Shaun’s difficulties with time. Other times a shortcut or a store of hidden resources
can be discovered. This quest is a constructive and dynamic process that might even
change the landscape. There was urgency, so with help Shaun took an alternate
route home.
There are still some theoretical issues to ponder. For example, what was Shaun’s
imagination really like, and how did he experience it? Also, what neurobiological
and neuropsychological problems were responsible for Shaun’s difficulties with
time? Perception of time is a complex area of study. A variety of brain mechanisms
appear to be involved depending on the time scale being studied—milliseconds,
seconds, hours, or days—and there is little understanding of how mechanisms at
any of these levels may be related. Several studies have implicated the right
hemisphere, particularly the frontal area, as particularly important in the perception
of passage of time. But several researchers, including Alexander, Cowey, and
Walsh (2005), suggest there is a role for a right frontal-parietal network. Of
note, the results of Shaun’s neuropsychological evaluation were consistent with
particular difficulties in right hemisphere functioning, including frontal and parietal
areas. Abnormalities in the right parietal area were also very clear on his EEG
and MRI.
Update
Shaun, no longer a minor, and his mother freely gave permission for his history and
therapy to be described because they thought other young people in similar circum-
stances might be helped. More services are available to Shaun and his family now,
which has reduced much of his family’s stress. Shaun’s mother helps him make
jewelry, which he sells through the Association for Retarded Citizens (ARC). He
also likes to ‘‘mess with’’ electronics, enjoyed taking a shop class, and trains dogs
for others with disabilities. Shaun’s mobile phone is ever present, like a transitional
object. He has memorized all the icons and menus on the phone, and the back-
ground screen has pictures of each of his family members. He likes to put video
clips from family vacations on his phone and surprise his mother. Understanding
time continues to be a struggle, but when his parents take a weeklong vacation, for
example, Shaun is comfortable when a respite worker stays with him, even if he
106 M.C. Kaven
cannot understand or track when his parents will return. He now has a vagus nerve
stimulator (VNS) to help control his seizures but still needs close supervision by a
caretaker to help him manage his seizure activity. His mother thinks the VNS has
also helped with Shaun’s depression, focus, and memory. Developing same-age
friends is still a problem, primarily because it has been hard to find others of his age
with similar abilities and interests.
His older brother has continued to travel overseas since the big first trip that was
so hard for Shaun to comprehend and tolerate emotionally when he was in the RTC.
When asked how he felt about his brother’s trips, Shaun said, ‘‘I was happy for him
and upset.’’ Shaun and his brother no longer fight; neither is Shaun aggressive. His
mother described, ‘‘Maybe a door slam or curse word, and he apologizes afterwards
and communicates better. He might say, ‘I didn’t like the tone of voice you were
using.’’’ A small detached residence on the family’s property is available for Shaun
to use when he feels ready. In retrospect, his mother feels that the RTC was
instrumental in helping Shaun and his family separate from each other and in
assisting Shaun to become more independent.
Hemiparesis. Weakness on one side of the body, involving both the arm and leg
and sometimes the face. It is associated with a variety of medical conditions; among
the most common are stroke and head injury. In such cases, the brain insult or injury
is often on the opposite side from the weakened arm and leg. Hemiparesis may be a
temporary condition. Prognosis will depend on the medical condition.
Source Memory. The aspect of episodic memory related to the context of the item
or experience being recalled. For example, if the content of a girl’s memory is
‘‘Grandma is coming for my birthday,’’ the context would include how and when
she found out her grandmother was coming. Did her mother tell her, did she read it
in a letter, or did she just imagine it? That is, what was the source of the information
being recalled? The capacity for source memory normally increases during early
childhood.
Status Epilepticus. A seizure or series of seizures lasting at least 30 min without
complete recovery of mental functioning. It is considered to be a medical emergen-
cy because it may lead to a variety of medical difficulties, including hypoxia, brain
swelling, very low blood pressure, difficulties breathing, or even death. Seizures
may be either convulsive or nonconvulsive. An EEG may be required to confirm the
presence of nonconvulsive seizure activity.
References
Alexander, I., Cowey, A., & Walsh, V. (2005). The right parietal cortex and time perception: Back
to Critchley and the Zeitraffer phenomenon. Cognitive Neuropsychology, 22(3/4), 306–315.
Childswork/Childsplay. Web site: http://www.childswork.com
Friedberg, R. D., & McClure, J. M. (2002). Clinical practice of cognitive therapy with children and
adolescents: The nuts and bolts. New York: Guilford Press.
Johnson, S. M. (1994). Character styles. New York: Norton.
Kendall, P. C. (2006). Child and adolescent therapy: Cognitive-behavioral procedures (3rd ed.).
New York: Guilford Press.
Academy of Cognitive Therapy, http://www.academyofct.org

Stewart, K. (2007). Helping a child with nonverbal learning disorder or Asperger’s disorder:
A parent’s guide. Oakland, CA: New Harbinger.
Chapter 12
Family Matters: Psychosocial Factors
on Neuropsychological Outcome
Grace W. Fong
Jamie was a typically developing, healthy, and active teenaged girl who enjoyed life.
She did well in school, especially in math and science, and dreamed of becoming a
science teacher. Jamie and her family were not initially alarmed when she seemed to
come down with the flu after returning from a family vacation in Maine. However,
when the usual medicines just did not seem to work and Jamie’s health instead began
declining rapidly, her mother decided it was time to see the doctor. A blood test led to
other tests, and soon, without warning, Jamie was diagnosed with leukemia, a form of
cancer in the blood (Box 12.1). Jamie’s world was immediately turned upside down.
She barely had time to even think about her new diagnosis before having to start an
aggressive chemotherapy treatment. Her parents were devastated and scared as they
tried to sort through the impact of this diagnosis on their daughter’s future. Over the
next few weeks, Jamie’s health problems multiplied as she suffered a left-sided
stroke that resulted in right-sided hemiparesis (weakness) and aphasia (language
problems). Jamie was rushed to the hospital and underwent multiple surgeries to
address complications related to the stroke. After her surgeries, Jamie was trans-
ferred to an inpatient rehabilitation unit to learn to function independently again.
At that point, the right side of Jamie’s body was paralyzed, and she could not speak,
control her bladder, or eat independently and thus required a feeding tube.
During inpatient rehabilitation, Jamie received speech and language and occu-
pational therapies. By the time she was discharged, she had made significant
progress in her ability to walk, speak single words, and eat independently. Arrange-
ments had been made for her to continue to receive speech and language, occupa-
tional, and physical therapies in addition to special education placement through
her local public school. Unfortunately, when Jamie was transferred to a different
school later that school year, she was discharged from all of her therapies, although
she retained her special education placement at her new school.
Jamie rarely had attended classes because of a home-bound medical classifica-
tion that excused her from attending school when she was feeling ill due to side
effects from chemotherapy. However, Jamie continued to remain home from school
on most days even after her chemotherapy treatments were completed. This was

110 G.W. Fong
Box 12.1
Leukemia is a general name for cancer in the blood. There are four main types of leukemia:
l Acute Myelogenous Leukemia (AML)
l Acute Lymphocytic Leukemia (ALL)
l Chronic Myelogenous Leukemia (CML)
l Chronic Lymphocytic Leukemia (CLL)
Leukemias are classified as either acute cancers that develop rapidly or chronic cancers that
develop slowly. Most leukemias in children are acute. Leukemia affects cells in the bone
marrow that undergo a leukemic change and multiply until they eventually outnumber normal
cells. Lymphocytic (or lymphoblastic) leukemia affects the marrow cell that forms a type of
white blood cells called lymphocytes. In myelogenous leukemia, cellular changes occur in
marrow cells that form red blood cells, some other types of white blood cells, or platelets. ALL
is the most common cancer in children, especially in those between ages 2 and 8 years. For
unclear reasons, ALL is more common in Caucasian children than African-American children,
although it appears to be the most common in Hispanic children. Prenatal exposure to X rays or
later exposure to high doses of radiation appears to increase the risk of ALL. Individuals with
Down syndrome or other genetic conditions appear to have increased risk for ALL. Signs and
symptoms of leukemia are not specific to leukemia but include fatigue, tendency to bruise
easily, and recurrent minor infections. Diagnosis of leukemia typically begins with a physical
exam and blood test, which may be followed by additional tests. Treatment options include
chemotherapy and/or radiation treatments.
due in large part to Jamie being teased and occasionally bullied by her special
education classmates who were behaviorally disruptive. Her teacher had failed to
intervene at any level. Jamie was very concerned about being teased, and even the
thought of having to interact with her peers was overwhelming. Jamie’s lack of
confidence was a significant change from her previously assertive and confident
nature. Given her mother’ desire to protect Jamie from any further pain, Jamie had
been allowed to avoid negative classmate interactions by spending her days with
her mother at work.
Jamie also had to contend with a number of cognitive issues in addition to her
social problems at school. Her mother noticed that Jamie appeared more distractible
and forgetful than usual and was having problems focusing. Moreover, despite
regaining the ability to speak, Jamie continued to experience language difficulties.
Jamie’s language problems appeared to be exacerbated by the headache medicine
she was taking, and she complained about this side effect to her neurologist.
Unfortunately, little could be done because she was still having chronic headaches.
These cognitive issues were a significant change from the girl who had been an
honor-roll student prior to her medical issues.
Jamie and her family were having great difficulty accepting and coping with the
trauma of her medical issues and their subsequent impact on her day-to-day life.
Jamie often felt frustrated and angry about what had happened to her. She was very
self-conscious of her hair loss from the chemotherapy and her unresolved speech
problems. Jamie had been prescribed an antidepressant, which she found somewhat
helpful. However, she continued to feel sad and hopeless most of the time. She felt
12 Family Matters: Psychosocial Factors on Neuropsychological Outcome 111
she had become a different person. She felt slower than usual, had trouble focusing,
and lacked confidence in her daily decision making. Although Jamie was no longer
interested in her friends or going out, when she was forced to go to fun activities,
she was able to enjoy them. Jamie also had been having problems sleeping
and often woke up tired. In addition, her appetite was affected, and she had lost
16 pounds in 2 weeks. Even with all of these issues, when questioned, Jamie
adamantly denied having thoughts of self-harm. Then, just when she and her family
thought things could not get worse, they lost their home in an unexpected tragedy.
Luckily, they were able to rely on the support of friends who took them in as they
searched for a new home.
Jamie’s neurologist referred her for a neuropsychological evaluation of her
cognitive and emotional functioning in light of her emotional issues and ongoing
cognitive problems. When Jamie arrived for the evaluation, she had just finished
chemotherapy treatment and had not required radiation therapy. She was soon
found to be in remission for her leukemia. Despite the discontinuation of chemo-
therapy, Jamie continued to require a heavy regimen of medications for ongoing
headaches, pain, and concerns about possible seizures.
Test Results
In light of Jamie’s complicated medical history and lack of previous evaluations, a

broad approach was taken in assessing all aspects of Jamie’s cognitive functioning.
Although a more comprehensive evaluation of Jamie’s language abilities would
normally have been conducted, only a brief screen of this area was conducted
because of time restrictions. Jamie was also to complete a speech and language
evaluation with her school to determine her eligibility for services. Individual tests
administered included measures of intelligence, academic achievement, attention,
executive functions, visual-motor integration and visual processing, fine motor
functions, language abilities, learning and memory, and emotional functions.
Jamie’s mother also completed several child behavior checklists rating her daugh-
ter’ emotional and behavioral functioning.
Jamie initially presented as a shy and reserved girl who quickly became teary
when asked about her medical condition. In fact, Jamie and her mother both cried
easily each time they discussed Jamie’s medical issues and the subsequent impact
on her functioning. However, over the course of the evaluation, Jamie’s affect
brightened and she would even smile shyly during casual conversation. Her
responses, however, tended to be brief and limited to a few words. She appeared
to have difficulty finding the right word to say and on at least one occasion resorted
to describing the word she was trying to say; however, she seemed to have no
problems understanding task requirements. Jamie appeared to favor her left hand
but was able to use her right hand slowly to produce legible printing. Although
Jamie tired easily, with short breaks she was able to resume working each time with
112 G.W. Fong
renewed energy. Jamie persevered on all tasks but worked at a slow pace. In
general, she was compliant, cooperative, and self-motivated.
Jamie’s evaluation results placed her overall intellectual ability in the borderline
impaired to below average range (Table 12.1). However, she demonstrated a
significant discrepancy between her average nonverbal and visual spatial abilities
and her mildly impaired to borderline impaired verbal and language abilities,
working memory, and speed of information processing. Taking into account
Jamie’s medical history of a left-sided cerebral stroke along with the corresponding
right-sided weakness and language problems, Jamie’s solidly average nonverbal
and visual spatial abilities likely were more representative of her premorbid intel-
lectual functioning. The impact of Jamie’s language problems as well as attention
and executive functioning problems was observed in her variable performance
across the individual subtests. On subtests with minimal language requirements,
Jamie’s performance was average. However, on subtests with language demands,
Jamie’s performance was weaker as indicated by her low average to borderline
impaired range performance. Consistent with her concerns about mental slowing,
Jamie also demonstrated slowed speed of information processing, particularly on
tasks requiring complex fine motor output. This was also noted in her borderline
impaired to impaired ability to visually sequence numbers rapidly.
Related to her focusing and decision-making problems, Jamie demonstrated
problems with attention and executive functioning (Table 12.2). On a measure
of sustained attention, she was inattentive and made excessive omission errors
(missed targets). In addition, she was slow but also variable in her rate of respond-
ing to targets. Executive functioning problems were noted in Jamie’s ability to
manipulate information mentally, demonstrate mental flexibility, problem-solve

Wechsler Intelligence Scale for Children – Fourth Scorea Percentile
Edition
Verbal Comprehension Index 69 2nd
Vocabulary (4) 2nd
Comprehension (4) 2nd
Working Memory Index 71 3rd
Digit Span (9) 37th
Letter-Number Sequencing (1) 0.1st
Coding (4) 0.4th
a

Omissions [64.91] 94th
Commissions [44.67] 33rd
Hit RT [84.08] 99th
Hit RT standard error [69.23] 97th
Delis-Kaplan Executive Function System
Trail Making Test
Number Sequencing (4) 2nd
Letter Sequencing (1) <1st
Number-Letter Switching (1) <1st
20 Questions
Total Questions (3) 1st
The Tower of London 78 7th
Inhibit [55] 75th
Shift [79] 99th
Emotional control [80] 98th
Behavioral regulation index [75] 98th
Initiate [74] 99th
Working memory [87] 99th
Plan/organize [76] 99th
Organization of materials [65] 92nd
Monitor [64] 92nd
Metacognition index [79] 99th
Global executive composite [79] 99th
Right hand <1 <1st
Left hand 68 2nd
Visual discrimination 75 5th
Motor coordination 82 12th
Boston Naming Test 48 <0.1st
Story memory delay (5) 5th
Story memory recognition (7) 16th
List A Total Trials 1–5 83 13th
List A short-delay free recall 85 16th
List A short-delay cued recall 78 7th
List A long-delay free recall 78 7th
List A long-delay cued recall 85 16th
Recognition hits 78 7th
Dot locations
Learning (4) 2nd
Total score (4) 2nd
Long delay (5) 5th
Delayed recall 93 32nd
114 G.W. Fong
efficiently, and organize information, particularly as task demands increased in

complexity or involved language. Accordingly, Jamie’s mother’s ratings of her
daughter’s executive functioning suggested even greater problems in Jamie’s day-
to-day functioning when faced with real-world demands.
Consistent with Jamie’s history of left-sided stroke, problematic fine motor
dexterity and language functions were noted. Although impaired fine motor dexter-
ity was noted bimanually, Jamie’s performance was significantly worse and in the
severely impaired range with her dominant, right hand. However, when Jamie was
asked to trace figures rapidly, her speeded motor coordination was low-average, and
when she was asked to copy simple to complex geometric designs, her visual motor
integration was average. Although Jamie’s speeded visual discrimination was
borderline impaired, a review of her performance suggested an adverse impact
from inattentiveness. Although a more extensive evaluation of Jamie’s language
functioning was deferred to her school, Jamie’s visual confrontation naming was
impaired, which was consistent with her complaints of word-finding difficulties.
This appeared to be impacted in part by processing speed, because Jamie often
struggled to generate a response within the designated time limit.
Memory functions were also noted to be problematic, but more with regard to
Jamie’s encoding of novel verbal information. With regard to verbal memory skills,
difficulty was noted in Jamie’s encoding of complex, organized stories as well as
her encoding of wordlist items on a verbal learning through repetition task. As
such, Jamie’s delayed recall for the stories and the wordlist items were low average
to borderline impaired. Her delayed recognition for story details and wordlist
items were also low average to borderline impaired, suggesting memory problems
primarily related to problematic initial encoding of novel verbal information.
Encoding problems were also noted in Jamie’s ability to learn a visual array over
multiple trials. In contrast, on a separate task, Jamie’s delayed recall of a complex
geometric design was average, suggesting adequate ability to retain nonverbal
information, once encoded.
Consistent with the reported and observed language problems since her stroke,
problematic academic achievement was noted on language-based academic func-
tions (Table 12.3). Although her basic math calculation skills were intact, Jamie’s
basic spelling skills were borderline impaired to below average, and her reading
decoding skills were mildly impaired. A review of Jamie’s premorbid functioning

Woodcock Johnson Tests of Achievement – Third Score Percentile Grade
Edition equivalent
Academic skills 70 2nd 4.1
Letter-word identification 65 1st 3.0
Spelling 77 6th 4.1
Table 12.4 Other emotional functions

Children’s Depression Inventory
Total score [55] 70th
Negative mood [64] 93rd
Interpersonal problems [54] 68th
Ineffectiveness [45] 32nd
Anhedonia [60] 84th
Negative self-esteem [39] 14th
Behavior Assessment System for
Children – Second Edition
Internalizing problems [86] 99th
Anxiety [74] 98th
Depression [80] 99th
Somatization [84] 99th
Withdrawal [63] 90th
suggested that this change occurred secondary to her recent medical events because
her prior academic function was not noted to be problematic.
Finally, consistent with presenting emotional concerns, Jamie’s ratings of her
mood functioning indicated significantly elevated negative mood and anhedonia
(ability to enjoy life). Maternal ratings of Jamie’s emotional and behavioral func-
tioning were remarkable for clinically significant, internalizing problems such as
anxiety, depression, somatization, and, to a lesser degree, withdrawal (Table 12.4).
Together, the results obtained suggested a general pattern of lateralized findings

that would be consistent with Jamie’s history of a left-sided stroke (e.g., poorer
right-handed fine motor speed and coordination compared with her left hand,
language and verbal problems, relatively poorer verbal memory than nonverbal
memory, weakness in language-based academic functions). Generally speaking,
certain cognitive functions are thought to be supported by one side of the brain or
the other. For example, in most individuals, the left side of the brain largely
supports language functions while the right side of the brain largely supports
visual-spatial abilities. Other functions are lateralized as well, such as motor
functions: the right side of the brain controls left-sided motor movements, and
vice-versa. On the basis of these generalizations, when an individual experiences a
stroke or some other type of damage to the brain, the deficits that may occur are
often reasonably predictable based on which side the insult has occurred. Even
more specificity in predicting deficits often can occur by considering the exact area
where the damage has occurred.
In addition, consistent with Jamie’s diagnosis of leukemia that required chemo-
therapy treatment, Jamie demonstrated slowed processing speed and problems with
attention and executive functioning. Research suggests that cognitive problems
116 G.W. Fong
associated with leukemia treatments such as chemotherapy are most commonly

observed in attention skills, although problematic processing speed, working memory,
visual-motor skills, and arithmetic skills have also been noted. Further, the impact of
leukemia treatments on cognitive functioning varies with a number of factors, such as
the type of treatment received, age at the time of treatment, and gender.
Finally, also concerning was the likely impact of emotional factors such as
anxiety and depression and their contributions to some of Jamie’s neurocognitive
difficulties. Despite Jamie’s very significant cognitive problems that required
remediation and accommodations in school, the greatest area of concern was the
impact of Jamie’s ability to cope with her new medical issues and her depressed
mood. Mood issues were evident in parent ratings of Jamie’s emotional functioning.
Symptoms of concern included Jamie’s depressed mood, decreased enjoyment of
everyday activities, social withdrawal, sleep dysregulation, fatigue, poor concen-
tration, and psychomotor slowness. After reviewing Jamie’s medical records, it
appeared that her depressed mood had been an issue of concern since she was first
diagnosed with leukemia and that it was continuing to have significant impact on
her general well being.
Therefore, the first recommendation made was to address Jamie’s depressed
mood. Although she had been prescribed and was taking an antidepressant, Jamie
still continued to experience symptoms of depression. Individual therapy was
recommended to help Jamie find power in being able to control her emotions and
cope better. Jamie seemed hesitant when therapy was first suggested to her, so time
was spent introducing her to cognitive behavioral therapy techniques in order for
her to better understand the basic concept of therapy. She was taught some basic
principles to work on changing her thoughts to improve her emotions, and she
seemed willing to try therapy.
Jamie’s treatment plan also had to take into account her mother’s understandably
strong desire to protect her daughter. Jamie’s mother had spent the past year
fighting to protect Jamie from any pain that could be avoided, and she was reluctant
to have her daughter subjected to yet another doctor’s care. Unfortunately, although
Jamie’s mother clearly cared about Jamie, in playing ‘‘momma bear’’ her attempts
to protect her daughter had allowed Jamie to perpetuate some maladaptive coping
strategies, such as her avoidance of school. Trying to convince Jamie’s mother that
she could not always be there for Jamie was unproductive – she had spent the past
year heroically being there for Jamie. Instead, the focus had to be shifted to Jamie’s
needs and what was in her immediate and long-term best interests. Once the
emphasis was shifted back to helping Jamie cope and subsequently live better,
progress could be made toward considering therapy. Thus, after a discussion of
Jamie’s emotional needs, a compromise was made to pursue family therapy first to
address everyone’s adjustment and coping with Jamie’s medical issues. It was
hoped that this would later develop into an opportunity for Jamie to learn better
coping strategies to manage her mood and her anxiety about school independently.
In considering referrals, emphasis was placed on finding a therapist with whom
Jamie would feel comfortable.
Jamie still had to contend with a number of cognitive issues. Given her medical
history and neuropsychological problems, an Individualized Education Program
(IEP) under the Other Health Impairment classification was felt to be appropriate.
With the discrepancy between her average nonverbal abilities and her problematic
language abilities, her resource room placement also appeared to be appropriate.
However, given the problems noted during the evaluation, both speech and lan-
guage and occupational therapies were recommended in Jamie’s IEP. Recommen-
dations were also made to provide accommodations for Jamie’s difficulties,
including the provision of teacher/peer notes, taped lectures, training in the use of
a keyboard for writing assignments, time-based homework assignments, and allow-
ance for extra time on tests. Standard attention and memory recommendations were
also included to help Jamie function more independently at school.
Update
Jamie continued to have regular follow-up visits with her oncologist and other
physicians to monitor her ongoing recovery and remission from leukemia. By her
next neurology visit, Jamie’s family had found a new home, and Jamie had been
enrolled in a new school. Her new classroom was more academically challenging
and her classmates were friendlier. In addition, since Jamie had experienced some
mild improvements with her headaches, her neurologist had been able to lower her
medication dosage, which seemed to improve some of Jamie’s language problems.
Jamie’s mother had also arranged for her to receive private speech and language
therapy over the summer to ensure that Jamie would not have a gap in her therapy
services.
Despite these positive changes, Jamie’s emotional issues still lingered. Although
a therapist had been found for Jamie, she and her family were awaiting the
resolution of insurance issues. Nevertheless, Jamie and her mother continued to
find ways to cope with the trauma of the past year. Although they still cried easily
whenever discussing the events of the past year, mild improvements in Jamie’s
mood were noted in what seemed to be a slight glimmer of hope in Jamie’s eyes
when she relayed some of the new, positive changes in her life. Therefore, despite
Jamie’s slow and probable partial recovery from her cognitive problems, her
emotional recovery looked hopeful.
Cognitive Behavioral Therapy A type of therapy based on the idea that an indivi-
dual’s own thoughts lead to maladaptive feelings and behaviors, rather than
118 G.W. Fong
external things, like other people, situations, or events. Because of this, if indivi-
duals can modify and manage their thoughts, they can feel better even if the
situation does not change.
Depression A mental disorder characterized by the following symptoms: depressed
or irritable mood, markedly diminished interest or pleasure in everyday activities,
significant weight loss or gain, increased or decreased sleep, psychomotor agitation
or retardation, fatigue, feelings of worthlessness or excessive guilt, poor concentra-
tion, and recurrent thoughts of death. Depression is diagnosed when five or more of
these symptoms are present for 2 or more weeks.
Lateralized Located on the right or left side of the brain.
Seizure Temporary abnormal electric discharge in the brain. Clinical manifesta-
tions include sudden disruption of specific cognitive functions while this discharge
is occuring.
Stroke A neurological syndrome characterized by the acute onset of neurological
symptoms following disturbance in the brain’s blood supply leading to cell death.
The two main types of strokes are ischemic stroke, which involves blockage of a
blood vessel, and hemorrhagic, which involves bleeding.
References
American Psychiatric Association, & Task Force on DSM-IV. (1994). Diagnostic and statistical
manual of mental disorders: DSM-IV (4th ed.). Washington, DC: American Psychiatric
Association.
Baron, I. S., Fennell, E. B., & Voeller, K. K. S. (1995). Pediatric neuropsychology in the medical
setting. New York: Oxford University Press.
Bluebond-Langner, M. (1996). In the shadow of illness: Parents and siblings of the chronically ill
child. Princeton, N. J: Princeton University Press.
Butler, R. W., & Mulhern, R. K. (2005). Neurocognitive interventions for children and adolescents
surviving cancer. Journal of Pediatric Psychology, 30(1), 65–78.
Davis, H., Marlow, N., & British Psychological Society. (1993). Counselling parents of children
with chronic illness or disability. Leicester, Baltimore, MD, U.S.A: British Psychological
Society; Distributed exclusively in North America by P.H. Brookes Pub.
Moore, B. D., III. (2005). Neurocognitive outcomes in survivors of childhood cancer. Journal of
Pediatric Psychology, 30(1), 51–63.
National Cancer Institute. Leukemia home page. Retrieved November 27, 2007, from http://www.
cancer.gov/cancertopics/types/leukemia (provides information on treatment, clinical trials,
research, and statistics related to leukemia)
Waber, D. P., & Mullenix, P. J. (2000). Acute lymphoblastic leukemia. In Yeates, K. O. Ris,
M. D. & Taylor, H. G. (Eds.), Pediatric neuropsychology: Research, theory, and practice
(pp. 300–319). New York: Guilford Press.
The Leukemia & Lymphoma Society, http://www.leukemia.org. Provides information on leuke-

mia and its treatment. The ‘‘Disease Information’’ section can be particularly informative for
both clinicians and families. Families may also wish to view the ‘‘Patient Services’’ section to
learn more about available support. Relevant publications available at the Web site include
‘‘Acute lymphocytic leukemia’’ and ‘‘Coping with childhood leukemia and lymphoma.’’
The PACER Center, http://www.pacer.org. In St. Paul, Minnesota, a regional, Midwest center for
providing information, advocacy, and training for parents and professionals, about individual’s
rights, particularly in relation to education.
Parent to Parent-USA, http://www.p2pusa.org. A national non-profit organization whose programs
provide emotional and informational support to families of children who have special needs,
most notably by matching parents seeking support with an experienced, trained ‘‘Supporting
Parent.’’
NICHCY State Resources List, http://www.nichcy.org. Includes names, addresses, phone
numbers, and e-mail addresses for developmental disabilities, special education, vocational
rehabilitation, and parent advocacy programs for every state.
Chapter 13
Dog Attack: Physical Trauma
with Associated Brain Injury
Anna was a spunky and energetic young girl who enjoyed being ‘‘mommy’s little
helper.’’ She had been to her mother’s friend’s house many times and was familiar
with her dogs. When the women stepped outside during one visit, 8-year-old Anna
thought the two dogs might like to play together, so she took down the gate that
separated them from each other. She remembers reaching for the rope toy, thinking
she would play with them. She remembers the sounds as first the male full-grown
dog attacked her and then the adult female joined in, biting her severely, mauling
her head and neck. She remembers being dragged across the room and calling out
for help.
Her mother returned to the house only a few moments later. She immediately
noticed the gate, and her gaze turned to the front room and the sight of her only
child lying on the floor horribly injured. Running immediately to her, she noticed
Anna’s breathing was shallow. Anna could not talk and did not appear fully
conscious. While her friend called 911, Anna’s mother never left her side. An
ambulance arrived quickly to transport Anna to the emergency department.
During 9 hours of surgical intervention to stabilize her injuries, Anna experi-
enced pulmonary distress and required resuscitation. The attack had focused on
the right side of her face and neck. Her injuries included nearly complete
occlusion of the right internal carotid artery and focal injuries to both vertebral
arteries. Her right ear was severed, the facial nerves on the right side of her face
were injured, and her right eye was dislodged from its socket. Facial bones
required reconstruction, and plates were placed in the right eye socket and across
the bridge of her nose. Anna also experienced two cerebral infarcts. The first was
during the attack itself. Emergency computerized tomography (CT) and angio-
gram revealed an embolic stroke at the distribution of the middle cerebral artery on
the right. The second stroke came immediately following the completion of her
surgery in the right mid-parietal lobe.
Within an hour of moving to postoperative recovery, Anna called for her mother
and reported remembering everything. She had a tracheostomy and a gastrointesti-
nal tube. Although she experienced some disorientation from constant use of pain

122 J.N. Apps
Box 13.1 Anna’s medical complications

l Pulmonary distress and resuscitation
l Occlusion of the right internal carotid artery
l Focal injuries to both vertebral arteries
l Embolism – right middle cerebral artery
l Embolism – right mid-parietal lobe
l Tracheostomy
l Gastrointestinal tube and feedings
l Constant morphine for pain
l Permanent occlusion of the superior left vertebral artery
l Encephalomalacia – right parietal-occipital
medication, Anna remained relatively cognizant and communicated through hand

signs. She initially experienced full paralysis on the left side of her body. Anna
remained in the hospital for 7 weeks. During her long recovery, her parents
described frequent and extreme emotional highs and lows. Anna would become
intensely angry and frustrated, often crying. Other times she would become very
exuberant, and the smallest strides forward seemed to be major breakthroughs.
Angiogram during her recovery indicated Anna continued to experience the
blockage of one carotid artery. However, it was described to the family that Anna
had adequate connections on the top of her brain to support full cranial circula-
tion. Follow-up angiographies of the head and neck at 3 months and again at
1 year postinjury noted continued occlusion of the superior aspect of the left
vertebral artery and resolution of the hemorrhage in the right parietal-occipital
region, with some areas of resulting encephalomalacia. Four months after the
injury, Anna underwent major surgery once again to reconstruct her jaw, tear duct,
the bridge of her nose, eyelid, and ear canal. Three additional surgeries were
performed subsequently, with more planned once Anna finished growing into
adulthood.
With significant physical and occupational therapy, Anna regained major muscle
movements on the left side of her body. However, she continued to experience
some left-sided hemiparesis and possible neglect. Although she was able to retain
her eye, Anna experienced some long-term functional damage to the eye, including
dysconjugate gaze. She also had some reduced hearing in her right ear.
Anna had been attending second grade at the time of the injury. She had a
previous history of average grades and, despite never liking to read, average
achievement. She completed second grade by working with tutors, and then
returned to school at the beginning of third grade. Initially, the family and a large
support network of teachers believed everything was going well. However, in
fourth grade, Anna began to fail in mathematics. Homework took longer and longer
to complete. Fifth grade began at a new and larger school. Anna began having
problems with attention, and she continued to struggle in math. When she was
required to enroll in summer school in order to progress to the sixth grade, her
parents became more concerned.
13 Dog Attack: Physical Trauma with Associated Brain Injury 123
Anna also was demonstrating problems with coordinated motor movements.

Physical therapy had been completed some time ago; however, like most adoles-
cents, Anna began having trouble remaining compliant with her home exercises.
Her parents described her as ‘‘sassy’’ at times, with some ‘‘normal’’ adolescent
defiance and occasional giddy behavior. They portrayed her as an affectionate
girl, invested in her family, friends, teachers, and church. At the time of evaluation,
they stated that Anna had continued concerns regarding her vision and her diffi-
culty using her left hand. However, they clearly stated that they and Anna had
no problems with her scars, her physical appearance, or remorse about the injury.
It had been 3 years since the attack, and the family was interested in seek-
ing neuropsychological evaluation only to determine whether there were any
‘‘permanent’’ cognitive sequelae.
Test Results
Given Anna’s complex medical history and lack of any recent neurocognitive
evaluations, a broad approach was taken in assessment, with a focus on visual
and motor tasks. Anna’s parents and teacher completed several behavior checklists
to assess her level of possible emotional or behavioral dysfunction. Individual tests
administered included measures of intelligence, academic achievement, learning
and memory, visual-motor integration and visual processing, executive functions,
motor and sensory abilities, and emotional functions.
Anna presented as a tall, thin young lady with obvious facial deformities on the
right side of her face involving her right eye. She was cautiously friendly upon meeting
the examiner, although rapport was established quickly. Anna immediately began
chatting about her summer and carried easy, appropriate, and pleasant social conver-
sation throughout the evaluation. Her sustained attention was adequate, although she
was mildly distractible at times. She demonstrated left-sided hemiparesis that did not
affect gait but was noted to affect significantly the use of her left hand.
In reviewing Anna’s evaluation results (Table 13.1), intellectual abilities were in
the overall average range, with her verbal abilities in the average range and her
nonverbal abilities average to above average. Limited variation was seen among
individual subtests. Anna demonstrated relative difficulties with visual-motor tasks
requiring rapid processing speed, with her performances falling into the low
average range. Anna performed consistently within the average range on all

Wechsler Intelligence Scale for Children – Fourth Scorea Percentile
Edition
Processing Speed Index 88 21st
a
124 J.N. Apps

Woodcock Johnson Tests of Achievement – Third Edition, Score Percentile Grade
Form A Equivalent
Letter–word 107 68th 7.1
Spelling 108 70th 7.7
academic tasks, with the exception of speeded tasks (Table 13.2). On these tasks,
which required rapid visual-motor speed, she performed in the low average range.
Further, among executive skills, Anna demonstrated intact performances in all areas
except for visual fluency and visual problem-solving, which were low average.
No significant attention difficulties were noted on formal examination (Table 13.3).
Immediate and delayed memory abilities were in the average to above average
range for both visual and verbal information. Anna demonstrated mild difficulties
learning unstructured visual information, although her long-term recall of the
information was intact. Visual-motor integration, visual recognition, and overall
motor coordination were all within the average range. However, not surprisingly,
significant deficits were found in motor and sensory functions in her left hand.
Although Anna’s deficits in motor and sensory functioning were significant, no
evidence of visual neglect was noted during evaluation. Visual field testing indi-
cated that Anna had difficulty seeing items placed in her right peripheral vision,
which appeared directly related to her continued physical complications with her
right eye. Anna was able to attend and respond adequately to stimuli in all other
visual fields. On tasks of visual attention, no neglect was noted for the right side of
the stimuli, although Anna consistently demonstrated poorer performances on tasks
requiring visual-spatial orientation and organization.
In formulating an explanation for these findings, Anna’s areas of relative weakness,

including her continued deficits in sensory and motor functioning in the left side of
her body, were thought to be consistent with her right parietal stroke and resulting
encephalomalacia. Anna’s mild relative difficulties on tasks requiring rapid visual-
motor speed were thought to indicate continued mild difficulties processing and
responding to visual information.

Tests Raw Score Percentile
score
Visual immediate 94 34th
Visual delayed 106 66th
Verbal immediate 112 79th
Verbal delayed 106 66th
General memory 108 70th
Learning 85 16th
Delayed recognition 118 88th
Copy <10th
Immediate recall <10th
Delayed recall <10th
Beery-Buktenica Developmental Test of Visual-Motor 96 39th
Integration
Visual perception 100 50th
Motor coordination 99 47th
Right hand 102 55th
Left hand <50 <1st
Finger Gnosis
Right hand (errors) 1/20 76
Left hand (errors) 11/20 <50
Graphesthesia (Numbers)
Right hand (errors) 3/20 98
Left hand (errors) 16/20 <50
Verbal Fluency Test
Letter fluency (11)
Category fluency (12)
Category switching
Total (12)
Accuracy (13)
Design Fluency Test
Condition 1 total (8)
Twenty Questions Test
Initial abstraction (14)
Total questions (9)
Achievement (10)
Tower Test
Achievement (8)
Move accuracy ratio (6)
126 J.N. Apps
However, an additional area of concern was raised in this evaluation that was not
part of the presenting complaint. Anna’s history indicated past symptoms consistent
with posttraumatic stress disorder. Although these symptoms appeared to have
resolved, upon emotional evaluation, Anna continued to demonstrate high levels of
inappropriate guilt, depressive symptoms, and significant anger. Anna’s primary
coping methods included denial and an attempt to internalize these feelings.
Collected behavioral reports indicated that Anna had consistent difficulties attend-
ing in the classroom and often preferred to be alone. At home, Anna reportedly was
complaining often about somatic concerns and also often withdrew from others.
Although none of Anna’s caretakers felt she was demonstrating major emotional
or behavioral problems, Anna’s withdrawal and somatic concerns were thought to
be related to overwhelming emotional distress. It appeared through the course of
working with this young woman that she had internalized significant responsibility
for demonstrating that she was ‘‘okay’’ to all the adults in her life. This had left her
unable to express her anger and guilt appropriately and resulted in her feeling
isolated.
Anna was diagnosed with encephalopathy and late effects of a brain injury, as
well as an adjustment disorder. Anna likely experienced symptoms consistent
with a posttraumatic reaction immediately following the event, including night-
mares and emotional dysregulation. However, in the past 3 years, while she
continued to demonstrate chronic emotional symptoms related to not only the
trauma itself but the constant stressor of physical sequelae from her injuries, the
severity of these symptoms did not meet criteria for a formal, chronic posttraumatic
stress disorder. Anna was no longer reexperiencing the trauma itself or physiologi-
cal reactions to reminders of the trauma, but she was continuing to demonstrate
emotional adjustment issues.
Recommendations initially focused on the family acknowledging Anna’s need
for emotional interventions. Speaking with the family about the recommendation
of therapy was delicate, because it directly challenged many of the family’s
defenses. They were praised for the remarkable job they had done coping with
such a tragedy. The clinician empathized with the extensive journey the family
had been through during recovery. Then, a developmental perspective was intro-
duced to the parents to help them understand that Anna was continuing to reexpe-
rience the meaning of her attack at every stage of her development. Although the
adults in her life also may experience some revisiting of the loss and grief of the
attack over the years, Anna must relive the impact of this event daily and in all
aspects of her growth and development. Such a complicated grieving process
leaves even the best of children emotionally exhausted and overwhelmed. Anna
needed the opportunity to work with someone not involved in her history since
the attack, someone with whom she could openly explore all aspects of her coping.
A further suggestion was made for the family to pursue at least time-limited
family therapy to specifically learn additional techniques for coping with emotions
as a family.
Further recommendations with Anna and her family focused on the physical and
cognitive sequelae of her injury. Because of Anna’s increasing avoidance of using
Box 13.2 Further modifications to Anna’s classroom curricula

l Avoid timed tests or assignments if a true representation of skills is desired
l Make tasks shorter in length
l Give assignments with similar types of questions presented together to reduce visual
recognition demands
l Provide external structure on larger projects, breaking larger assignments into smaller,
more manageable, components
her left hand, it was recommended that she return to physical and occupational
therapy. This would provide a structure for her to continue to rehabilitate and learn
how to better incorporate ongoing exercises into her daily life. Additional recom-
mendations focused on Anna’s lower relative performances on tasks of a timed,
visual nature. These included allowing greater time to complete visually based
assignments, particularly in mathematics, and tasks requiring written output.
Anna’s Individualized Education Program (IEP) through the school provided the
structure for such accommodations.
Reevaluation of Anna’s visual fields and recognition skills was recommended
following surgical correction of her right eye. Her current visual status was impact-
ing her vision, which was anticipated to improve with surgery but would require
continued monitoring. Further, reevaluation of Anna’s cognitive development was
recommended in approximately 3 years to continue monitoring her motor and
sensory skills, visual processing abilities, and development of executive skills.
This family continued to be invested in their child being developmentally sound,
cognitively, emotionally, and socially. It remained unclear if they would return for
reevaluation or follow through with the emotional recommendations suggested.
However, an important aspect of this evaluation remained the attempt to help the
family understand that Anna’s emotional development may require equal attention
to her cognitive, motor, and sensory growth.
Adjustment Disorder A mental disorder that involves the development of emotion-

al and/or behavioral symptoms in response to an identified stressor. Qualifiers are
available to distinguish acute from chronic reactions, and symptoms are further
described through subtypes of symptoms.
Embolic A blockage in a blood vessel.
Encephalomalacia An area within the brain of dead or destroyed cells.
Hemiparesis Lack of motor coordination or paralysis on one side of the body.
128 J.N. Apps
Neglect The tendency to ignore one side of the body or information presented to
one side of the body.
Posttraumatic Stress Disorder An anxiety disorder occurring following exposure
to a traumatic event in which a person experienced intense fear or threat to life,
followed by heightened physiological arousal, persistent reexperiencing of the
event, and avoidance of things associated with the event.
References
American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders:
DSM-IV (Text Revision, 4th ed.). Washington, DC: American Psychiatric Association.
Cohen, J. A., Mannarino, A. P., & Deblinger, E. (2006). Treating trauma and traumatic grief in
children and adolescents. New York: Guilford Press.
James, B. (1989). Treating traumatized children: New insights and creative interventions.
Lexington, MA: Lexington Books.
Saxe, G. N., Ellis, B. H., & Kaplow, J. B. (2007). Collaborative treatment of traumatized children
and teens: The trauma systems therapy approach. New York: Guilford Press.
Lowenstein, L. (1999). Creative interventions for troubled children & youth. Toronto: Champion
Press.
Monahon, C. (1997). Children and trauma: A guide for parents and professionals (1st ed.). San
Francisco: Jossey-Bass.
Chapter 14
Back to Life: Anoxic Brain Damage
in a Near Drowning
John M. Oestreicher
Near drowning is a significant cause of disability in children, with one-third

sustaining moderate to severe neurological impairment. The risk for near drowning
is greatest among toddlers, preschoolers, and adolescent males. Younger children
are more likely to drown in swimming pools (Verive, Heidemann, & Fiore, 2007).
Charlie, a 7-year-old boy, was found at the bottom of a swimming pool in
Singapore, where he was living with his parents, 9-year-old sister, twin brother,
and 10-month-old brother. It was undetermined how long he was submerged. He
was resuscitated and transferred to a local hospital, where magnetic resonance
imaging (MRI) was completed, revealing no structural damage. Given the traumatic
stress this event placed on Charlie’s family, they elected to return to the United
States for his rehabilitative services.
Charlie was referred for neuropsychological assessment at the direction of his
physiatrist, 2 months after the near-drowning in order to more carefully examine his
current pattern of neurocognitive strengths and weaknesses following anoxic brain
injury. Charlie’s parents noted several changes in his behavior and cognitive
functioning. They described concerns regarding marked changes in his processing-
speed. He was much slower in his overall information processing. He also had been
experiencing disturbed motor functioning, including disturbed gait, balance and
coordination issues, and a tendency to fatigue quickly. He was receiving physical
and occupational therapy through a local rehabilitative program. In addition, Charlie
was involved in speech and language services to address ongoing concerns with word
finding difficulties. The speech and language pathologist raised additional concerns
about potential left-sided neglect, because Charlie often failed to attend to infor-
mation on the left side of a worksheet.
Charlie’s parents also described some changes in his personality, both increased
emotional lability and general apathy. He previously had been rather competitive
with his twin brother, but his parents noted that Charlie seemed resolved to give up
on tasks that he found difficult.
Associated difficulties for Charlie were relatively few. He experienced no head-
aches or sensory disturbances and never experienced a seizure. He had no notable

130 J.M. Oestreicher
sleep or appetite disturbances, and his additional medical history was generally
unremarkable. His family medical history was significant for depression on the
maternal side, because Charlie’s great-grandfather was hospitalized for this disor-
der. Charlie’s mother reported no difficulties with pregnancy. Charlie and his
identical twin were born at 36-weeks’ gestation. Charlie was twin B and presented
as breech but was delivered without further difficulty at a weight of 4 pounds, 11
ounces. Both he and his brother were mildly jaundiced and treated with biliwraps.
They experienced no subsequent postnatal difficulties. Charlie was able to achieve
developmental milestones in an age-appropriate manner.
Charlie was homeschooled by his mother and working at a 1st grade level. Prior
to his injury, he read simple sight words and performed simple math such as
addition and subtraction. Math continued to be an area of strength for Charlie but
reading seemed to be more difficult, and he had demonstrated greater regression in
this area.
Charlie’s home environment was described as generally harmonious, and the
family was planning to return to Singapore after Charlie completed his rehabilitation.
Test Results
In cases of near-drowning, computerized tomography (CT) studies suggest that

survivors are not a homogeneous group in terms of neurocognitive impairments,
which may be very specific to quite generalized. Therefore, the assessment was
designed to be comprehensive, taking into account general abilities and assessing
the specific areas of language comprehension and expression, simple motor and
psychomotor functioning, visual-spatial reasoning, visual analysis and construction,
verbal and nonverbal learning and memory, and executive functioning, including
specific tasks of processing speed.
Testing was completed over 2 days to avoid fatigue, and Charlie was pleasant
and cooperative. He readily adjusted to the test situation, although he exhibited
mild anxiety and requested that his father remain in the exam room. This did not
seem to interfere with his ability to adjust to the test situation, because he formed a
good working relationship with the examiner. He demonstrated appropriate affec-
tive range and stability over time. Although Charlie tended to be relatively quiet, he
seemed to encounter no difficulties with language fluency. Mild articulation pro-
blems and language sequencing impairments were noted at times. Charlie exhibited
no evidence of whole body overactivity, but he was fidgety during some tasks. His
attention was sometimes variable during the exam and seemed to deteriorate
slightly over time, interfering with his ability to carefully monitor his performance
during some tasks. Charlie typically exhibited appropriate reflective behavior.
Given his good level of effort, the test results appeared to reflect a fairly reliable
and valid estimate of his neurocognitive functioning.
On the basis of a lateral preference examination, Charlie presented as predomi-
nantly right-handed, exclusively right-footed, and right-eyed. His motor speed
rated as average bilaterally. Mild bilateral slowing was evident on a task of speeded
14 Back to Life: Anoxic Brain Damage in a Near Drowning 131
eye‐hand motor coordination, with these weaknesses more pronounced with his
nondominant (left) hand. Although Charlie completed a task of visual imperception
and suppression without error, he encountered mild to moderate weaknesses bilat-
erally on a task of finger gnosis, which was more pronounced with his nondominant
(left) hand.
Charlie completed one measure of psychometric intelligence (WISC-III) yield-
ing a verbal IQ score within the low average range while performance and full-scale
IQ scores fell within the borderline range of intellectual functioning (Table 14.1).
Verbal reasoning and problem solving were primarily within the low average range,
and mild to moderate impairment was evident on tasks of working memory. On the
performance section of the test, Charlie’s visual spatial reasoning was variable
(Table 14.2). He scored within the average range on a measure of visual scanning,
the mildly to moderately impaired range on tasks of visual analysis and construc-
tion, and the moderately impaired range on a measure of visual sequencing. His
processing speed rated as mildly impaired.
Charlie performed inconsistently on tasks assessing verbal and psycholing-
uistic abilities (Table 14.3). On a measure designed to assess the symbolic and
communication aspects of language, Charlie encountered three errors in reading.

Wechsler Intelligence Scale for Children – Third Edition Scorea Percentile
Verbal Comprehension Index 88 21st
Perceptual Organization Index 77 6th
Freedom from Distractibility Index 69 2nd
Information (8)
Similarities (7)
Arithmetic (3)
Vocabulary (8)
Comprehension (8)
Digit Span (6)
Coding (6)
Block Design (5)
Object Assembly (6)
Symbol Search (6)
a

Wide Range Achievement Test – Third Revision Score Percentile Grade equivalent
Reading 83 13th Kindergarten
Spelling 81 10th Kindergarten
Arithmetic 69 2nd Kindergarten

Tests Raw score Score Percentile Age equivalent
Name Writing
Right hand 94 34th
Left hand 75 5th
Right hand 78 7th
Left hand 63 3rd
Finger Tapping Test
Right hand 103 58th
Left hand 112 79th
Visual Suppression Test
Right hand (errors) 0 106 66th
Left hand (errors) 0 106 66th
Finger Agnosia
Right hand (errors) 5 77 6th
Left hand (errors) 7 66 1st
Reitan Indiana Aphasia Screening Test
Dysgraphia (errors) 1 70 2nd
Dyslexia (errors) 3 54 <1st
Dyscalculia (errors) 2 22 <1st
Total (errors) 6 73 4th
Peabody Picture Vocabulary 100 50th 7–2
Test – Third Edition, A
Expressive Vocabulary Test 72 3rd 4–9
NEPSY
Phonological processing (5)
Verbal fluency 66 1st
Arrows (6)
Multilingual Aphasia Examination
Token test 108 70th
Progressive figures (time) 134 76 5th
Buschke Selective Reminding Test
Recall 92 30th
Long-term store 95 37th
Consistent long term retrieval 105 63rd
Wide Range Assessment of Memory
and Learning – Second Edition
Design memory (7)
Finger windows (6)
Sentence memory (6)
Beery-Buktenica Developmental Test 99 42nd 6–6
of Visual-Motor Integration
Children – Third Edition
Digit span (6)
(continued)

Tests Raw score Score Percentile Age equivalent
Coding (6)
Symbol search (6)
Test of Variables of Attention
Omission errors 46 <1st
Commission errors 61 <1st
Response time 82 12th
Variability 65 1st
He also committed a simple spelling error when attempting to copy a word, and his
calculation skills were inefficient. He performed within the mildly to moderately
impaired range on measures of phonological processing as well as language fluency,
requiring him to generate words in response to sound cues. Charlie’s expressive
language skills rated mildly to moderately impaired on a measure of expressive
vocabulary. His receptive language skills and language comprehension appeared
strong. Charlie performed within the low average range on language-based
academic tasks. His math skills fell within the mildly cognitively impaired range.
Charlie performed inconsistently on tasks of verbal and nonverbal learning and
memory. His performance was rated as average, when he was asked to learn a list of
phonemically and semantically unrelated words in the context of a selective
reminding instructional procedure. He readily transferred information from short-
term to long-term memory and performed solidly within the average range when
attempting to retrieve learned information from long-term memory. Charlie per-
formed within the low average range when attempting to recall and reproduce
design information in its appropriate spatial location. His immediate memory
skills for both verbal and nonverbal information rated as mildly impaired because
Charlie found it somewhat difficult to repeat spoken sentences of progressively
increasing length and to reproduce a series of visual-spatial patterns of progres-
sively increasing length.
Charlie’s reproductions of several simple geometric forms were generally unre-
markable in visual-spatial characteristics. He performed solidly within the average
range when attempting to reproduce a series of simple and progressively more complex
figural stimuli. However, he encountered mild difficulties when he attempted to render
judgments regarding the angular orientation of arrows directed toward a target.
Mental flexibility and simple problem-solving skills rated as mildly impaired
because Charlie encountered slowing when he attempted to negotiate a visual-
spatial pattern while utilizing size and form cues alternately for orientation and
direction. Attention-based functioning rated as at least mildly impaired; that is,
Charlie encountered difficulties on tasks of working memory, including measures
of short-term recall of both digit strings and visual-spatial patterns. Processing
speed weaknesses were evident on tasks involving quickly and accurately matching
symbolic stimuli and visual search and attention. Charlie’s performance on a
measure of sustained attention and concentration revealed his difficulties in moni-

toring his efforts over time because he committed a high number of inattentive and
impulsive errors. His processing speed rated as low average but tended to be highly
variable across the task.
Charlie’s parents were asked to complete ratings of his pre and postdrowning
behavior. Prior to the event, Charlie was described as exhibiting very mild diffi-
culties with sustained attention, restlessness, and impulsiveness. He showed mild
oppositional tendencies but not to the extent that would warrant diagnosis. He
reportedly demonstrated appropriate social interaction with both peers and adults.
He frequently had nocturnal enuresis.
Following his injury, Charlie was described as exhibiting pronounced difficulties
with sustained attention. He frequently encountered difficulties with organization,
failed to follow through on tasks, and was forgetful and distractible. He showed
increased levels of restless or fidgety behavior along with prominent impulsive
tendencies and was prone to complain of physical symptoms. But he had not
demonstrated any increase in oppositional behaviors. His interpersonal skills had
not changed dramatically nor had his frequency of nocturnal enuresis.
Examination of Charlie’s performances on the battery of tests revealed a pattern of

generalized weaknesses with lateralization of deficits on the left side of the body
and with tasks of visual-spatial functioning. In addition, he demonstrated mild to
moderate impairments in expressive language, speeded fine motor coordination,
processing speed, and other aspects of attention/concentration skill. He also demon-
strated a number of skills that were generally intact, including receptive language,
simple motor functioning, and some components of verbal learning and memory,
particularly when information was repeated for him. Charlie’s verbal reasoning and
problem solving, while being low average, could be viewed as a relative strength.
The noted pattern of functioning appeared to be due to his near-drowning episode,
because the onset post-dated the traumatic event.
Charlie would benefit from continued supportive services involving speech and
language and occupational therapies to address his expressive language and fine
motor weaknesses. He likely would continue to encounter word-finding difficulties,
at least over the next several months as he continued his recovery. Additionally, he
would need to be provided with appropriate wait times so that he may express
himself while avoiding the frustration that may occur due to others’ expectations for
rapid responding. Charlie could also engage in tasks or games at home that would
allow him to practice fine motor skills. Games such as Pick-Up Sticks or various
sorting tasks may be helpful in improving his dexterity. Careful observation of the
development of his writing skills would be warranted because this may prove a
weakness for Charlie in the future. Should this be the case, accommodations could
be provided such as early instruction in keyboarding, because typing may better

match his thinking speed than printing or cursive handwriting. Voice-activated
software might be considered if typing is overly difficult.
Charlie presented with generalized weaknesses in his overall academic function-
ing. Prior to his injury, he was beginning to demonstrate early reading skills.
At the time of the assessment, it appeared that Charlie was continuing to develop
limited sight vocabulary but was struggling with phonological decoding. It was
recommended he continue with a phonics-based instructional approach while
monitoring his reading development to determine whether he may be experiencing
any difficulties in blending word sounds. Should this be the case, using an
analytic phonics-based program that would teach him to recognize letter cluster
sounds would be beneficial in reducing blending difficulties and creating a fluent
reading style.
Utilizing concrete approaches when teaching math skills might aid Charlie to
develop basic math concepts. Tangible items, such as an abacus, could help him
to understand basic addition and subtraction. Similar strategies might be incor-
porated when teaching multiplication and division. It would be helpful to monitor
his math functioning over time because this could continue to be an area of
weakness for Charlie. Should this be the case, it would be helpful to teach math
in a straightforward step-by-step manner, such as using recipe cards on which each
step is laid out in the appropriate sequence. His mother should continue instructing
him in a home-school education program for the remainder of the school year
because transitioning to a formal education program might be difficult, given his
tendency to fatigue easily.
Charlie was struggling with generalized learning and memory weaknesses.
However, he was capable of learning when information was repeated for him. It
would be important to keep this in mind when presenting new material to him.
Using repetition and attempting to relate any new information to that which he had
learned previously might allow him to more readily consolidate the information.
Attempting to utilize mnemonic strategies, which might include visualization or
chunking related material, could help Charlie enhance his initial learning of infor-
mation. Frequently repeating instructions for him and, when doing so, maintaining
his eye contact and speaking in short, simple phrases, pausing between statements,
would allow him time to process the material. Asking him to repeat or paraphrase
instructions would provide an opportunity to demonstrate his understanding of the
task and practice rehearsal strategies.
Charlie demonstrated weaknesses with several measures of attention-based
functioning, particularly in processing speed. A pharmacotherapy trial might be
undertaken to determine what positive impact it may have on his overall function-
ing. It would be important to carefully observe his adjustment to medication to
determine whether it is producing the desired benefit and monitor for any unwanted
side effects. Charlie seemed to attend fairly well over short time frames, so breaking
down longer tasks into shorter segments may help him focus on one segment at a
time. Incorporating breaks between segments and providing him with reinforce-
ment for maintaining his focus might help produce a more efficient working style
while avoiding frustration secondary to fatigue. Charlie may continue to demon-

strate motor restlessness, which may decrease over time with ongoing recovery. For
the time being, these behaviors should be ignored, as long as they do not interfere
with his education or progress in therapies. Allowing him opportunities to expend
excess energy during breaks might also be considered.
Charlie tended to engage in impulsive behaviors that could result in increased
careless errors. It may be helpful to teach him self-monitoring through verbal
mediation or self-talk strategies. Encouraging Charlie to narrate his approaches to
problem solving may allow him to catch his mistakes. In addition, using a card-
board screen to cover all but one problem on a worksheet may help to avoid
difficulties with distractibility.
Testing revealed a pattern of lateralized weaknesses to the left side of the body,
a finding that would not normally be anticipated with anoxic encephalopathy.
Although the imaging conducted soon after the event was read as revealing no
structural damage, it may be beneficial to consider additional neurological assess-
ment to determine whether there is any correlating evidence and possibly to repeat
imaging.
Charlie was still in the early phases of recovery and likely would continue to make
sizable gains at least for the next 6–12 months. Then recovery rates may slow
substantially but still continue for the next 2–3 years. Reassessment in 12 months
may be beneficial in monitoring the extent of his gains while providing an opportunity
to direct other strategies for remediation, based on his level of functioning at that time.
Analytic Phonics The analysis of whole words to detect phonetic spelling patterns
and then to split them into smaller parts to help with reading.
Anoxic Brain Injury Brain injury caused by a lack of oxygen in the blood, also
known as Anoxic Encephalopathy.
Immediate Memory The capacity to retain information upon immediate presenta-
tion.
Jaundice A condition characterized by yellowness of skin and the whites of eyes
caused by excess bilirubin in the blood.
Left Neglect The failure to attend to sensory stimuli presented to the left body side.
Phonological Decoding Translating the letters or spelling patterns of a written
word into speech sounds in order to identify the word and gain access to its meaning.
Processing Speed The speed at which sensory information is processed, that is,
how quickly one can produce a response after information has been presented.
References
Ball, J., Budrionis, M., & Trott, K. (1987). Neuropsychological effects of cold water near-
drowning in an identical twin. International Journal of Clinical Neuropsychology, 9(2),
71–73. Retrieved Tuesday, May 22, 2007 from the PsycINFO database.
Christensen, D., & Jansen, P. (1997). Outcome and acute care hospital costs after warm water near
drowning in children. Pediatrics, 99(5), 715. Retrieved Tuesday, May 22, 2007 from the
Psychology and Behavioral Sciences Collection database.
Cruikshank, B., Eliason, M., & Merrifield, B. (1988). Long-term sequelae of cold water near-
drowning. Journal of Pediatric Psychology, 13(3), 379–388. Retrieved Tuesday, May 22, 2007
from the PsycINFO database.
Johnstone, B., & Bouman, D. (1992). Anoxic encephalopathy: A case study of an eight-year-old
male with no residual cognitive deficits. International Journal of Neuroscience, 62(3),
207–213. Retrieved Tuesday, May 22, 2007 from the PsycINFO database.
O’Flaherty, J., & Pirie, P. (1997). Prevention of pediatric drowning and near-drowning: A survey
of members of the American Academy. Pediatrics, 98(2), 169. Retrieved Tuesday, May 22,
2007 from the Psychology and Behavioral Sciences Collection database.
Pearn, J., Bart, R., & Yamoka, R. (1979). Neurologic sequelae after childhood near-drowning:
A total population study from Hawaii. Pediatrics, 64(2), 187. Retrieved Tuesday, May 22,
2007 from the Psychology and Behavioral Sciences Collection Database.
Quan, L., Wentz, K., Gore, E., & Copass, M. (1990). Outcome and predictors of outcome in
pediatric submersion victims receiving prehospital care in King County, Washington. Pediat-
rics, 86(4), 586. Retrieved Tuesday, May 22, 2007 from the Psychology and Behavioral
Sciences Collection Database.
Quart, L., Gore, E., Wentz, K., Allen, J., & Novack, A. (1989). Ten-year study of pediatric
drownings and near-drownings in King County, Washington: Lessons in injury prevention.
Pediatrics, 83(6), 1035. Retrieved Tuesday, May 22, 2007 from Psychology and Behavioral
Sciences Collection database.
Tipton, M., Eglin, C., Gennser, M., & Golden, F. (1999). Immersion deaths and deterioration in
swimming performance in cold water. Lancet, 354(9179), 626–629. Retrieved Tuesday, May
22, 2007 from the Psychology and Behavioral Sciences Collection database.
Zelman, K. (1999). Memory, attention, and academic achievement skills in children who Survive
near-drowning accidents. Retrieved Tuesday, May 22, 2007 from the PsycINFO database.
Zelman, K (2002). Neurodevelopmental outcome for extended cold water drowning: A longitudi-
nal case study. Journal of the International Neuropsychological Society, 8(4), 588–595.
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Bierens, J. J. L. (2005). Handbook on drowning: Prevention, rescue, treatment. Berlin Heidelberg

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Dworkin, G. M. (1997). The Heimlich controversy in near-drowning resuscitation. Parks and
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2007 from http://emedicine.com/ped/topic2570.
Part II
How It Can All Go Wrong:
Developmental Disorders
At the very beginning of her introductory graduate course in child development at

the University of Kansas three decades ago, the noted developmental psychologist
Frances Dean Horowitz challenged her students with the question, What makes
development happen? She was speaking to those of us who would devote our
careers to researching normal development or understanding and working to “fix”
abnormal behavior and cognition or some combination of these ventures. This
question also undergirds what Fletcher and Taylor (1984) termed “developmental
neuropsychology” as an approach to the study of developmental disabilities. This
class of disorders, which in plain English could be described as “just grew up that
way,” is the focus of Part II.
In an incisive analysis of several major types of developmental problems that are
often assessed by pediatric neuropsychologists, Pennington (1991) proposed that
symptoms within any given syndrome can be grouped into an important hierarchy.
The most important difficulties – often implied to be causal or even necessary and
sufficient for the disorder to occur – that a child is experiencing are conceptualized
as primary, whereas associated symptoms that often but not always appear in a
certain disorder are considered secondary, correlated, or artifactual.
For example, phonological processing deficits are generally considered to be a
proximal cause of most cases of word-level reading disability (often used synony-
mously with developmental dyslexia and learning disability) in basic reading.
Debate continues on the degree to which genetic predisposition vs. environmental
factors (especially exposure to different instructional approaches and the extent or
intensity of such exposure) contributes to reading decoding difficulties in any
individual case, although ample research evidence has been replicated to demon-
strate the existence of both sources of cause in samples of children and adults with
reading disabilities in general. Thus, Pennington (1991) sorted the symptoms of
dyslexia as follows (Box 1):
Primary: problems with reading and spelling, problem in the phonological coding
of written language
Secondary: poor reading comprehension, poor math, poor self-esteem, letter
reversals, eye movement differences in reading
140 How It Can All Go Wrong: Developmental Disorders
Box 1 Pennington’s (1991) symptom catagories
Primary: core symptoms, universal, specific, and persistent

Correlated: same etiology, affect different brain systems
Secondary: consequences of above symptoms
Artifactual: appear associated, not causally related
Correlated: problems in language processes—articulation, naming, verbal short-

term memory, verbal long-term memory
Artifactual: problems with attention, delinquency, visual-spatial problems
Let’s play a game. As you read the stories in Part II, we invite you to pause and
try answering Horowitz’s challenge by sorting the story parts into Pennington’s
symptom categories. You could get clues by perusing Chaps. 17 and 18 in reference
to the dyslexia example provided or by reading Pennington’s excellent book to see
how he sorts several other disorders, such as the attention-related problems
in Chaps. 15 and 16 and the autistic spectrum disorders in Chaps. 22 and 23.
In the end, your own ever-developing knowledge base about the science of child
development will shape your response to Horowitz’s query. Have fun!
References
Fletcher, J. M., & Taylor, H. G. (1984). Neuropsychological approaches to children: Towards a

developmental neuropsychology. Journal of Clinical Neuropsychology, 6, 39–56.
Pennington, B. F. (1991). Diagnosing learning disorders: A neuro-psychological framework. New
York: Guilford Press.
Chapter 15
The Energizer Bunny Meets Shirley Temple:
Attention Deficit Hyperactivity Disorder,
Combined Type
‘‘She will not sit still and be quiet! She just goes and goes nonstop.’’ Jenna’s
exasperated mother moaned during the initial clinical interview. Her voice was
tinged with both frustration and guilt over her reactions to her daughter’s behavior
that occasionally resulted in abrupt, sharp rebukes. In addition, Jenna herself had
begun to realize that something was ‘‘wrong.’’ This previously effervescent and
optimistic child began to remark that she was stupid and dumb and was being
ridiculed by peers at school.
Historically, Jenna was a highly energetic toddler who talked excessively.
Although never significantly or consistently oppositional or argumentative, her
behavior became increasingly more difficult to control as she grew older. Jenna’s
mother noted that she literally played all day long and seemingly never tired. In
addition, it was impossible for her to sit down appropriately for longer than a few
minutes at a time. She constantly fidgeted, kicked her legs, or touched objects.
Cognitively, she had extreme difficulty staying focused and on-task, and needed
frequent redirection or a quiet, nonstimulating environment to complete work. She
had a tendency to be impulsive, rushing through her school assignments, which
resulted in careless mistakes. She had organizational problems in her day-to day-
activities (e.g., frequently losing objects or articles of clothing). Academically, she
had always been an average to above average student, but starting in the second
grade she began to demonstrate some struggles in mathematics, spelling, and
handwriting. Her mother’s perception was that Jenna’s difficulties in these academ-
ic areas were not reflective of a skill deficit but, rather, extreme problems with
sustained focus and impulsivity.
Medically, Jenna was in perfect health, and both language and motor develop-
mental milestones were reached within normal limits. She had no significant
problems with vision, hearing, eating, or sleeping. She was prescribed no medica-
tion at the time of the evaluation.
Socially, Jenna was described as an outgoing and engaging child who enjoyed
horseback riding and any outdoor activities. She lived with her parents and an older

142 M.J. Zaccariello
brother who had been diagnosed with Attention Deficit Hyperactivity Disorder-
Primarily Inattentive Type (ADHD-I) by a pediatric neuropsychologist. The home
environment was described as positive and loving.
Jenna’s parents requested a neuropsychological evaluation to identify her pattern
of cognitive strengths and weaknesses. However, their prime concern was her
increasing restlessness and difficulties with attention. They were also concerned
with the emotional toll of social ridicule because of her high energy behavior. Her
parents questioned if she met formal criteria for Attention Deficit Hyperactivity
Disorder (ADHD) and wished for professional corroboration of their suspicion.
Jenna had never undergone a neuropsychological evaluation, and her mother
was curious about her overall cognitive skill set. Consequently, a broad approach
was taken, with a focus on attention and mental executive function measures.
Measures of attention are thought to assess one’s ability to direct and maintain
focus on a task. Executive functions are considered a related construct and involve
higher-ordered, goal-directed abilities that are organizational or supervisory in
nature. This cluster of abilities allows one to engage in abstract reasoning, prob-
lem-solving, judgment, cognitive flexibility, planning, and organization. Utilizing
feedback to correct responses, inhibit inappropriate behavior, and sustain one’s
attention is also considered in this area. Specific domains that were assessed
included intellectual ability, fine motor functions, attention, executive functions,
language fluency, visual-spatial abilities, and comprehensive academic skills de-
velopment. Behavioral ratings scales completed by both Jenna’s teacher and par-
ents were included as a critical foundation of the assessment.
Conceptual Diagnostic Background
With the introduction of the Diagnostic and Statistical Manual of Mental Disorders,
Third Edition, in 1980, delineation was made between the presence and absence of
hyperactive symptoms in children with attentional difficulties. Current diagnostics
further clarified this distinction into three types: primarily inattentive (ADHD-I),
primarily hyperactive-impulsive (ADHD-H), and combined (ADHD-C). However,
some recent studies have questioned the diagnostic accuracy of the current categor-
ical subtypes of ADHD and propose more of a dimensional model (Frazier, Young-
strom, & Naugle, 2007). Prevalence studies indicate that ADHD (devoid of a
specific subtype) is diagnosed three times as often in boys than girls in community
samples. This discrepancy rises to five to nine times more often in clinic-referred
groups. It is thought that ADHD-C occurs more often in boys and that ADHD-I
tends to be diagnosed more in girls. As children age, hyperactive symptoms
typically dissipate, but inattention symptoms can remain prominent. In a sense,
one does not typically outgrow ADHD.
There has been much debate in the literature concerning the usefulness
and relevance of neuropsychological tests in the diagnosis of ADHD. Although
a comprehensive review of this issue is beyond the scope of this brief case,
15 The Energizer Bunny Meets Shirley Temple 143
indications suggest that the most scientific and powerful diagnostic indicator of
ADHD is a significant level of inattention or hyperactive symptoms as reported on
behavioral rating scales.
So, this begs the question, what is the point of a comprehensive neuropsycho-
logical evaluation of a child with ADHD features? Although not necessarily
diagnostic, a neuropsychological evaluation can provide a snapshot of how signifi-
cantly inattention or hyperactivity interacts with performance in other cognitive and
academic domains. Once such areas have been identified, specific recommenda-
tions beyond those typically given for ADHD can be outlined in the report to
maximize a child’s learning potential (Tables 15.1–15.3).
Test Results
On formal testing, Jenna presented as an absolutely delightful and pleasant young

girl. She readily engaged in conversation and expressed an appropriate range of
emotion throughout the evaluation. Her social interactions were appropriate, and
she spontaneously demonstrated a very kind and helpful attitude (e.g., picking up
dropped items).
In terms of her approach to testing, there was significant evidence of motor
restlessness throughout the evaluation, coupled with moderate levels of distracti-
bility, inattentiveness, and impulsivity. She had extreme difficulty sitting upright
and still in her seat. She frequently fidgeted, got out of her chair, rubbed the walls,
and looked at herself in an one-way mirror. Rather frequently, she reached for test
stimuli before being told to do so and/or blurted out answers before receiving

General Ability Index 111 77th
Similarities (10)
Vocabulary (8)
Comprehension (12)
Perceptual Reasoning Index 121 92nd
Block Design (12)
Digit Span (11)
Processing Speed Index 109 73rd
Coding (12)
Symbol Search (11)
a

Broad reading 108 71st
Letter-word identification 110 75th
Passage comprehension 100 51st
Basic reading skills 109 73rd
Word attack 106 66th
Broad math 120 91st
Applied problems 126 96th
Broad written language 104 60th
Spelling 103 58th
Academic skills 110 75th
Academic applications 112 78th
Academic fluency 106 65th

Attention-Deficit Hyperactivity Disorder Rating
Scale – Fourth Edition
Home Version
Total >99th
Hyperactivity-impulsivity 97th–98th
Inattention 98th–99th
School Version
Total 95th–96th
Parent Form
Somatic complaints [53] 62nd
Thought problems [58] 79th
(continued)

Rule-breaking behavior [59] 81st
Vigilance task (9 minutes)
Correct 100 50th
Commission errors <1 <1st
NEPSY
Auditory Attention and Response Set (10) 50th
Attention Task (12) 75th
Response set task (10) 50th
Categories >16th
Total errors 96 39th
Perseverative errors 98 45th
Nonperseverative errors 92 30th
Conceptual level responses 100 50th
Failure to maintain set 2nd–5th
Learning to learn 2nd–5th
The Tower of London 72 3rd
Parent Form
Inhibit scale [80] 96th
Shift scale [45] 38th
Emotional control scale [48] 50th
Metacognition index [74] 97th
Initiate scale [67] 95th
Working memory scale [70] 94th
Plan/organize scale [69] 94th
Organization of materials scale [59] 83rd
Monitor scale [87] 99th
instructions. Despite these behaviors, she was relatively easy to redirect but did
require constant prompting throughout the test session.
Consistent with Jenna’s test session behavior, both her parents and teacher were
observing a significant level of inattentive and hyperactive symptoms. Her mother
also noted marked problems with impulse control, general organizational skills, and
the ability to self-monitor behavior. Her cognitive and behavioral difficulties were
leading to mild to moderate compliance issues at home and school.
A quick glance at Jenna’s neuropsychological profile revealed that most of her

scores were average to above average. Overall intellectual ability was high average
with a significant strength in nonverbal intellectual ability relative to her solidly
average verbal intellectual ability. She had little difficulty on specific tests of
language, visual-spatial processing, or fine motor dexterity. Her academic skills
development was progressing at the expected rate with no evidence of deficit in any
academic domain.
A different picture emerged on tests of attention and mental executive function.
Her test scores ranged from average to impaired. Jenna had difficulty on most tasks
where she had to rely on self-regulation strategies to successfully negotiate the
measure and did not have the examiner encouraging her to remain attentive. She
was impulsive, which resulted in a high number of mistakes. In addition, she
displayed a weakness in being able to change problem solving strategies efficiently.
On the basis of the responses to behavioral questionnaires and test session behavior,
Jenna had significant inattention, distractibility, impulsivity, and motor restless-
ness, which were consistent with individuals diagnosed with ADHD-C. She could
not sit appropriately for longer than 10–15 min at a time and frequently reached for
test stimuli or blurted out answers.
Jenna was subsequently diagnosed with ADHD-C, which includes a mixture of
problems with behavioral inhibition, sustained attention, organization, consistency
of performance, and/or goal-directed behavior. ADHD-C is the most common form
of ADHD that arises in childhood in 3–7% of the population (American Psychiatric
Association, 2000). The symptoms of ADHD do not spontaneously disappear in the
majority of cases but can be treated to some extent with behavior management and/
or medication. Jenna’s combination of ADHD-C features included average intel-
lectual ability and average to above average underlying academic skills. Therefore
it would be realistic for her to attain average to above average performance in
school most of the time.
Although not directly assessed, another important finding concerned is the
Jenna’s emotional functioning. During the assessment, she acknowledged strug-
gles in school and admitted self-esteem issues related to her attentional prob-
lems. Studies have shown that 40% of children with ADHD show signs of either
depression and/or anxiety (Spencer, Biederman, & Wilens, 1999). It is vitally
important to address the behavioral and cognitive difficulties that children with
ADHD typically experience. However, professionals, caretakers, and school per-
sonnel should also be acutely aware of the impact and range that ADHD can have
on a child’s emotional and social well-being. Her parents were provided with
psychotherapy referrals, which they could use if her distress continued or worsened.
At least 75% of children with ADHD benefit from stimulant medication. Jenna’s
behavioral and cognitive presentation of ADHD symptoms make an evaluation for
stimulant medication routinely recommended. If she continues using the medica-
tion over a long period of time, observation trials off medication for a week at a time
approximately twice during each school year would be useful to monitor her
ongoing benefit or need for the medication.
Standard suggestions for managing attention and organization problems in the
classroom included obtaining eye contact with Jenna prior to delivering directions.
It may be helpful to place a hand on her shoulder or arm and to be sure that
directions are clear, simply stated, and given one at a time. Delivering more com-
plex directions in brief, simple, numbered steps (e.g., ‘‘First, read pages 1–10;
second, answer questions 1–5; and third, check answers in the back of the book’’)
would also be helpful. If Jenna continues to have difficulty, writing down key
instructions and taping them to her desk may help cue her.
Presenting material in small, successive units that can be mastered hierarchically
would allow Jenna to maximize her attentional capacity, assist in organizing the
material to be learned, reduce the feeling of being overwhelmed by the material,
and develop greater self-confidence as she progresses through the material.
Jenna would need distractions minimized to the greatest extent possible in the
classroom (e.g., seating her at the front of the class and increased one-to-one contact
with the teacher), as well as regular feedback provided with concrete suggestions for
appropriate behaviors. It would also be helpful to provide consistency and structure
through daily schedules; standard seating arrangements; clearly defined class-
room expectations, rules and consequences; and clear places for necessary materi-
als, such as color-coded subject folders, and reinforcement for using organizers.
Jenna needs guided practice in planning how to complete assigned tasks (what
is needed, how to break tasks into manageable parts, estimating time needed for
each part) and to be assigned tasks or classroom duties that she can successfully
complete.
It would be helpful to provide other organizational checklists, such as steps to
get ready to go home after school, and to remind Jenna at the end of the day about
what she needs for home and the next day. Also, Jenna would benefit from pacing
her work and changing the pace or task frequently and from opportunities for
controlled movement.
Given Jenna’s inattentive and hyperactive tendencies, she would not always be
expected to perform at top efficiency level on timed tasks. Extra time can be given
strategically when needed, and curriculum requirements such as timed math tests
might be loosened or modified for her, but not omitted.
At home, Jenna needs more frequent attentional cueing. Adults should help her
break complex tasks into smaller steps. Commands should be given one or two at a
time, and longer sets of commands should be repeated, rehearsed, or written down.
More frequent attentional cueing (e.g., ‘‘look at this now’’; ‘‘this is important to pay
attention to’’) in everyday life will be needed in the long run, and adults should try
to avoid becoming frustrated with this need. She should be given extra instruction in
organizational skills such as outlining, diagramming, planning a sequence of steps
in complex tasks, and taking strategic breaks during extended study time.
Jenna and her family would benefit from ongoing consultation with a psycholo-
gist who is knowledgeable about behavior management approaches for children
with ADHD symptoms. Family psychotherapy could also provide an opportunity to

work on family interaction issues, emotional issues, and/or peer interaction issues
that often accompany ADHD.
Jenna’s difficulties with abstract reasoning and logical problem-solving tasks
suggest that she may have difficulty with some complex, novel tasks. Specifically,
she may find it difficult to analyze the requirements of a task and apply effective
strategies toward a solution. As a result, she may get frustrated with the acquisition
of novel cognitive skills such as higher level academics.
Although not indicated at this time given her average to above average academic
skills development, with a diagnosis of ADHD, Jenna may be eligible to have an
Accommodation Plan prepared for her as mandated under Section 504 of the
Rehabilitation Act of 1973. This could be particularly important if her academic
performance begins to suffer due to her ADHD presentation as she progresses to
higher grades with greater requirements for attention and self-control. Many of the
specific attention and organization suggestions outlined could be incorporated into
an Accommodation Plan.
Attention The cognitive process of selectively concentrating on one aspect of the

environment while ignoring other things.
Executive functions Processes that are most involved in giving organization and
order to actions and behavior. Executive functions involve (1) strategic thinking
and future planning, (2) the ability to inhibit or delay responding, (3) initiating
behavior, and (4) shifting between activities flexibly.
References
American Psychiatric Association. (2004). Diagnostic and statistical manual of mental disorders
(4th ed., Text revision). Washington, DC: American Psychiatric Association.
Barkley, R. A. (2006). Attention-deficit hyperactivity disorder. (3rd ed.). New York: Guilford
Press.
Cutting, L. E., & Denckla, M. B. (2003). Attention: Relationships between attention-deficit
hyperactivity disorder and learning disabilities. In H. L. Swanson, K. R. Harris, & S. Graham
(2003), Handbook of learning disabilities (pp. 125–139). New York: Guilford Press.
Ellison, P. (2005). School neuropsychology of attention-deficit/hyperactivity disorder. In R. C.
D’Amato, E. Fletcher-Janzen, & C. R. Reynolds (Eds.), Handbook of school neuropsychology
(pp. 460–486). New Jersey: Wiley
Frazier, T. W., Youngstrom, E. A., & Naugle, R. I. (2007). The latent structure of attention-deficit/
hyperactivity disorder in a clinic-referred sample. Neuropsychology, 21, 45–64.
Spencer, T., Biederman, J., & Wilens, T. (1999). Attention-deficit/hyperactivity disorder and
comorbidity. Pediatric Clinics of North America, 46, 915–927.
U.S. Department of Education, Office of Special Education Programs’ (OSEP), Individuals with
Disabilities Education Act (IDEA) web site: http://www.idea.ed.gov/explore/home
A.D.D. Warehouse, www.addwarehouse.com/shopsite_sc/store/html/index.html. Provides general

information on Attention Deficit Hyperactivity Disorder and a comprehensive catalog of
books, tapes, and training materials.
Barkley, R. A. (2000). Taking charge of ADHD: The complete, authoritative guide for parents.
(2nd ed.) New York: Guilford Press.
Children with Attention Deficit Disorders (CHADD), http://www.chadd.org. Lecture programs,
parent support groups, and valuable information for parents and teachers.
Dawson, P., & Guare R. (2003). Executive skills in children and adolescents: A practical guide to
assessment and intervention. New York: Guilford Press.
Flick, G. L. (1996). Power parenting for children with ADD/ADHD: A practical parent’s guide for
managing difficult behaviors. Hoboken, New Jersey: Jossey-Bass.
Learning Disabilities Association of America, http://www.ldanatl.org
National Center for Learning Disabilities, http://www.ncld.org, www.schwablearning.org and
http://www.ldonline.org/.
Chapter 16
‘‘He is not Working up to Potential’’:
Atypical Attention Deficit Hyperactivity
Disorder with Executive Weaknesses
Robert was referred for neuropsychological evaluation because of concerns regard-

ing his academic achievement. In fact, he had reportedly demonstrated inconsistent
motivation in school for quite some time. In early elementary school, he had not
shown any difficulty acquiring basic academic skills. However, he was occasionally
distractible or inattentive. In fifth grade, his parents become concerned about his
relationship with his teacher. They said Robert clashed with his teacher, developed
more negative emotions about school, and struggled with classroom performance.
He began therapy with a social worker, which appeared to enhance his coping skills,
and he showed some improvement in the classroom, but his academic performances
continued to be variable. He would ‘‘freeze’’ on certain tests, and his mother
described him as learning faster when things were presented in a song or pattern.
As Robert progressed through school, he appeared smart but did not seem to care
about school, was nonchalant, and would not work to his potential. He had difficulty
attending at times, inconsistently turned in assignments (even if he completed
them), and would not complete work even if he was able to do it. In the year before
he was referred for an evaluation, Robert completed ninth grade in a new school.
The transition to the new school was difficult for him, as he had to make new friends
while also adjusting to the high school environment. He did well initially, but his
grades declined over the course of the year. As a result, he failed two math classes
and was placed in summer school. The summer school teacher quickly indicated
that Robert knew all of the mathematical content of the class, and the teacher
reported being confused as to why he had not passed the class in the first place.
Robert’s mother became increasingly concerned about his academic difficulties.
She began to realize how much assistance with structure she gave him in the home
environment, including help with planning and lists. She decided that it was time
for a professional opinion about his development.
When Robert’s mother met with the neuropsychologist, she described him as a
good kid who was generally happy but had some difficulty expressing his emotions.
While she highlighted his difficulties with organization, she also described him as

152 J.N. Apps, D. Pflugradt
laid back, with no overt anxiety or depression (other than situational and generally
related to normal adolescent issues). Robert had never been defiant with his parents
or had any problems with his conduct. He also had no sleep problems. Reportedly,
he had recently become interested in his physical health, and he was active in
exercising and remaining fit in hopes of joining his high school football team. His
interest in football had also driven his decision not to use alcohol or other drugs.
Robert’s mother described her pregnancy and delivery with him as normal and
without complication; however, he was delivered 2 weeks late. He was described as
an ‘‘easy-going and funny’’ infant, who developed into a good kid. He met all of his
developmental milestones within normal limits. Starting at approximately 4 years
of age, he developed chronic ear infections, which were treated with adenoidect-
omy and tonsillectomy, as well as placement of ear tubes. At this time, he was
diagnosed with asthma and prescribed an inhaler to use on an as-needed basis,
which he continued to use at the time of evaluation. He also had seasonal and
environmental allergies, for which he was prescribed medications. Robert experi-
enced a concussion while playing football last year, following helmet-on-helmet
contact. He did not lose consciousness and was able to walk off the field by himself.
Following the game, he experienced a severe headache for several days, although
no memory loss or vomiting was involved. He was taken to the hospital, and cranial
magnetic resonance imaging (MRI) and a computed tomography (CT) scan were
normal. He remained out of practice for several weeks, following which he returned
with no subsequent complications. His additional medical history consisted of only
minor injuries throughout his lifetime.
At the time of evaluation, Robert was living with his mother. His parents
divorced when he was approximately 3½-years of age. He spent every other
weekend with his father. Maternal family history was described as remarkable for
mild depressive symptoms in his mother upon the deaths of her parents and learning
difficulties in a nephew. Paternal family history was remarkable for alcohol pro-
blems and depressive symptoms. Family stressors were significant; when Robert
was 2½-years old, the family experienced the loss of his infant brother. Approxi-
mately a year later, his parents divorced, and he and his mother moved in with his
maternal grandparents. When Robert was around 6½-years of age, he and his
mother moved into their own apartment; however, he remained close with his
grandparents. At age 13, Robert experienced the death of his grandfather. Over
the subsequent year, his grandmother became quite ill, and he and his mother were
actively involved in her care. Robert was with her when she died the following
summer. Following her death, he and his mother relocated, and he enrolled in his
new high school and started ninth grade.
Test Results
Given Robert’s past difficulties with distractibility, attention, and possible emotional
challenges, these areas were the focus of assessment.
16 He is not Working up to Potential 153
Robert was presented as a pubescent adolescent male dressed in khakis, a T-

shirt, and a baseball cap. His initial reaction to the examiner was appropriate, and
rapport was established quickly. He was extremely polite throughout the evaluation
day, and had good awareness of social cues. Although he did not initiate spontane-
ous social conversation, he was able to carry appropriate conversation when the
examiner began it. Robert’s sustained attention appeared good, and he was not
overly distractible in the one-to-one testing situation. However, his attention and
motivation appeared to vary on certain tasks. At times, he would make silly
mistakes, answer too quickly, or lose track of an item or thought. However, he
was easily reorientated to task, and this did not appear to negatively impact testing.
His mood was euthymic, and his affect was appropriate. Overall, Robert was very
cooperative with the entire testing process. He appeared self-motivated and wanted
to perform well. He worked persistently on items, although he was more inclined to
say he did not know an answer when asked verbal questions. On visual items, he
worked persistently until given the option to stop.
In reviewing Robert’s evaluation results, his intellectual abilities were in the
overall average range (Table 16.1). He demonstrated average verbal and nonverbal
intellectual abilities. His current level of academic skill acquisition was in the
average to above average range (Table 16.2). This was consistent with, or higher
than, what would be expected given his overall intellectual abilities. Robert did not
appear to be demonstrating any overt indications of a learning disability.
However, Robert demonstrated variable attention and executive function skills
(Table 16.3). His working memory was in the low average range, which was slightly
lower than would be expected given his overall intellectual abilities. He demonstrated
a statistically significant difference (p < 0.05) of 16 points between Verbal Compre-
hension and Working Memory Indices. Additionally, he had greater difficulty on

Verbal Comprehension Index 104 61st
Similarities (9)
Vocabulary (13)
Comprehension (11)
Digit Span (8)
Letter-Number (8)
Block Design (13)
Coding (10)
Symbol Search (9)
a

Woodcock Johnson Tests of Achievement – Score Percentile Grade
Third Edition, Form A equivalent
Letter-word 106 65th 10.6
Reading fluency 122 93rd 14.1
Broad math 104 62nd 10.5
Calculation 109 72nd 12.1

Tests Score
Verbal Fluency Test
Letter fluency (8)
Category fluency (6)
Category switching
Total (7)
Accuracy (8)
Design Fluency Test
Color-Word Interference Test
Color naming (8)
Inhibition (6)
Inhibition/switching (9)
Tower Test
Achievement (14)
Move accuracy ratio (9)
Conners’ Continuous Performance Test
Omissions [53.71]
Variability [74.28]
Standard error by block [84.84]
both verbal and visual tasks requiring the greatest amount of abstract thought.
Further, he demonstrated mild relative weaknesses in executive skills including
verbal fluency, the inhibition of behaviors, vigilance, and attention. He demon-
strated average visual fluency, overall processing speed, and problem-solving
skills. This pattern of mild executive dysfunction does not formally fall within the
diagnostic category for Attention Deficit Hyperactivity Disorder (ADHD). How-
ever, the conceptualization of ADHD as a neuropsychiatric disorder of executive
functions leaves open for interpretation how to categorize those children with mild
executive difficulties.
The lack of specific diagnostic categories for various types of executive deficits
often results in ADHD becoming the default diagnosis. Often these children exhibit
symptoms that meet formal DSM-IV-TR criteria for the disorder, although in
Robert’s case, his symptoms met formal criteria only minimally. He was qualified
as inattentive because of his difficulties with attention to detail, sustained attention,
follow-through, organization, and forgetfulness. However, these symptoms were
not clear enough to teachers and caregivers for Robert to appear as ‘‘classically
ADHD.’’ In cases like Robert’s, the clinician must help those living and working
with the child to understand how relative weaknesses in verbal fluency, impulsive
verbal behaviors, variable attention, mild distractibility, and lower relative abstract
reasoning skills can be conceptualized as a variant of ADHD and result in impaired
functioning.
Individuals who experience fundamental weaknesses in executive functioning
generally demonstrate a host of difficulties with their behaviors. Executive func-
tions allow a person to solve problems, think abstractly and flexibly, plan and
organize behavior, and alter behaviors based on experience and feedback. Problems
in these areas can result in difficulties organizing information and efficiently
managing large amounts of information. Individuals may not use prompts well
and may have trouble thinking flexibly, often becoming stuck responding in ineffi-
cient manners. Formal testing offers a window into a person’s executive skills but
does not comprehensively measure such a complex construct. Indeed, the introduc-
tion of executive function measures is still relatively new in the field of neuropsy-
chology, with some areas having a greater predominance of research available.
Measures of fluency, verbal working memory, inhibition, and planning have rela-
tively significant bodies of research contributing to overall validity. However, many
of these measures are not available at all ages. Further, our understanding of how all
aspects of executive skills develop in children continues to be an area requiring
further research. Therefore, while measures in these areas can inform, they are not
all inclusive in their explanation of a child’s functioning. Robert appeared to
struggle with some of these skills, particularly relative to his overall average
intellectual abilities. These relative weaknesses were likely to impact his ability
to acquire adequate study skills. However, his additional cognitive strengths were
areas from which he could build upon in order to learn to compensate for his
relative weaknesses.
Robert’s emotional development appeared age-appropriate. However, he was

struggling to reconcile his known abilities with his apparent weakness in remaining
organized and studying successfully. Robert had become stuck in a pattern of
expecting himself to somehow try harder. Intervening with Robert and his family
to help them understand how to compensate for his weaknesses became an impor-
tant step in his emotional growth and self-esteem.
Robert’s family was informed that he would likely function best in a structured,
consistent environment free of relative distractions. Although his executive weak-
nesses did not appear significant enough to qualify him for special education
assistance through an Individualized Educational Program (IEP), his parents were
strongly encouraged to help him learn appropriate study skills and environmental
controls in order to help him compensate for his difficulties (some environmental
compensations in the home environment are listed in Box 16.1).
Robert was likely to experience some difficulty organizing materials and
keeping track of multiple classes and assignments. More abstract assignments and
concepts might be harder for him, and he might have difficulty acquiring effective
study strategies, particularly compared with other young men of his age. A tutor or
academic mentor was strongly encouraged to provide the structure, guidance, and
assistance Robert may need to organize, synthesize, and manage the amount of
information involved in high school courses. This tutor should be someone whom
he can get along well with, who is less like a parent and more like a coach. The tutor
Box 16.1 Recommendations for the environment

l Keep rules clear and brief, and keep task lists short.
l Provide organizational structure, including using lists, calendars, and structured routines.
l Provide a distraction-free environment for the completion of homework or other chores,
including turning off the TV, video games, and/or music, closing windows, and reducing
noise.
l Assist Robert in getting started with assignments or projects, if he requires this, by ensuring
that he understands all of the instructions and expectations.
l Build in breaks, planned interspersed times of sustained attention for longer assignments or
projects.
l Establish a regular routine for homework with a specific time, place, and schedule.
l Monitor and give feedback, while not doing all of the work together, by praising positive
effort and hard work.
Box 16.2 Where do I find a tutor?
Parents often find tutors in a wide variety of places. A few places to start inquiring might
include the following:
l Family members with a background in education
l Past and current teachers
l Local universities and colleges
l Neighbors
l Pastors or church members
or mentor should have experience working with children with mild attention and
executive problems (Box 16.2). Robert and the tutor should meet as necessary,
probably two to three times a week, and the tutor could provide structured study
skills. Such a relationship will also allow for additional presentations of material as
needed, guidance in organizing and keeping track of classes and assignments,
structure and discipline in study skills, and alternative explanations for more
difficult abstract concepts. Further, the tutor would be encouraged to help Robert
learn how to recognize hints or cues in assignments that describe what output is
expected and could model and help Robert learn how to break larger tasks into
logical steps. An overall goal for Robert would be to learn better self-evaluation
skills, so that he can more effectively monitor and alter his own behavior and
actions academically.
Robert’s tutor and his parents were encouraged to work closely with each of his
teachers to encourage assistance, such as additional visual study aids or written
handouts of any lectures. Robert was likely to have greater difficulty than other
students in taking notes in a timely fashion and remaining orientated to longer
auditory lectures. Utilizing multimedia formats in the classroom may be helpful,
such as tape recording lectures.
If Robert’s school were to need a formal document to provide him with these
recommendations, his parents were encouraged to share the neuropsychologist’s
report with his school’s special education director and to request that Robert be
evaluated for a 504 plan to assist him with his academic weaknesses. Section 504
ensures that children with disabilities who do not qualify for formal assistance
through the special education department still have access to accommodations that
they may require.
Robert’s family was advised to continue to monitor his academic and emotional
development. Returning to a mental health care professional was recommended
should any further emotional or cognitive struggles develop. However, it was
anticipated that with the improved understanding both Robert and his family now
had about his executive weaknesses, he would be able to develop compensatory
strategies and experience increased academic success and improved self-esteem.
Attention Deficit Hyperactivity Disorder A disorder defined by the Diagnostic and

Statistical Manual of Mental Disorders (2000) that encompasses problems with
inattention, distractibility, and at times hyperactivity and impulsivity, which reach a
level of impairment across environments.
Executive Functions A cluster of cognitive abilities including but not limited to
working memory, attention, planning, set-shifting, and problem solving associated
with prefrontal-subcortical brain systems.
504 Plan Part of the civil rights act, Rehabilitation Act of 1973, which protects
the rights of people with various forms of disabilities to ensure that they are not
denied access to any program that receives federal funding.
References
American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders
(4th ed., text revised). Washington, DC: American Psychiatric Association.
Barkley, R. A. (2005). ADHD and the nature of self-control. New York: Guilford Press.
Dawson, P., & Guare, R. (2004). Executive skills in children and adolescents: A practical guide to
assessment and intervention. New York: Guilford Press.
Furman, L. (2005). What is attention-deficit hyperactivity disorder (ADHD)? Journal of Child
Neurology, 20, 994–1002.
Nigg, J. T. (2006). What causes ADHD: Understanding what goes wrong and why. New York:
Guilford Press.
Pliszka, S. R. (2003). Neuroscience for the mental health clinician. New York: Guilford Press.
Shallice, T., Marzocchi, G. M., Coser, S., Meuter, R. F., & Rumiati, R. (2002). Executive function
profile of children with attention deficit hyperactivity disorder. Developmental Neuropsychol-
ogy, 21, 43–71.
Voeller, K. K. S. (2004). Attention-Deficit Hyperactivity Disorder (ADHD). Journal of Child
Neurology, 19(10), 798–814.
Children and adults with attention deficit/ Hyperactivity disorder: http://www.chadd.org

Edward M. Hallowell. (1994). Driven to distraction: Recognizing and coping with attention deficit
disorder from childhood through adulthood. Random House, New York, USA: Pantheon
Books.
Michael Gordon. (1990). ADHD/Hyperactivity: A consumer’s guide for parents and teachers.
New York: GSI Publications.
Mountain Plains Regional Resource Center. A parent and educator guide to section 504: Another
service option for children with disabilities. http://www.rrfcnetwork.org/images/stories/
MPRRC/Products/Generic/Section504/504parentguide.pdf.
National Resource Center on ADHD: http://www.help4adhd.org.
Parent Advocacy Coalition for Educational Rights: http://www.pacer.org/index.htm
Russell Barkley. (2000). Taking Charge of ADHD: The Complete, Authoritative Guide for Parent.
(2nd ed.,) New York, USA: Guilford Press.
Russell Barkley. (2005). ADHD and the nature of self-control. NY, USA: Guilford Press.
The San Diego ADHD Project: http://www.sandiegoadhd.org.
Chapter 17
Sorting Sounds: Reading Disability
with Phonological Awareness Deficit
Robert F. Newby
As Angie’s father was reading to her one evening near the end of junior kindergar-
ten, he paused in the story to play a game with her of matching letters to their
sounds. Angie had been slow in learning to recognize printed letters earlier that
year, and he thought it would be good to practice some more advanced alphabet
skills now. He was dismayed to discover during the game that she was bafflingly
inconsistent at recognizing even the /a/ sound that began her own name. Had
Angie’s teacher not commented recently that the class was working on this for
the past several weeks?
After bedtime, Angie’s father called his sister, who was a reading specialist in
the next town. ‘‘Classic sign,’’ she burst out immediately, ‘‘particularly since Angie
has talked up a storm since the first words came out of her mouth!’’ Classic sign of
what? How could Angie’s aunt detect something with such clarity after her dad’s
brief phone description? In fact, her aunt was right: Angie turned out to have
a classic case of emerging word reading disability, and catching it early was a
good thing.
On her aunt’s suggestion, Angie’s parents next requested testing by an
Individualized Education Program (IEP) team at school, who documented her
strong general intelligence, with robust verbal comprehension skills in particular.
Angie also was whizzing ahead in early math development, drew with artistic flair,
and wrote numbers with amazing precision, but she meandered through most attempts
to write letters as if she were drawing abstract expressionism. She simply could not do
the oral language tests that asked her to put together sounds like n-e-t into one word
(even though she was an avid fisherwoman) or to take out a single sound like the /c/
from the word cart to come up with the word for her favorite subject at school. She
also was very slow in saying the names of simple color spots on a page, even though
she already was choosing paint for her room with names like fuchsia.
The IEP team concluded that Angie was at risk for the emergence of a reading
disability and offered to pull her out of some class time during senior kindergarten

160 R.F. Newby
the next fall for extra training in phonemic awareness (like the test tasks just
illustrated), beginning phonics skills (the association of sounds and printed letters),
and early literacy conventions (such as scanning from left to right and handling
basic punctuation like periods).
Angie’s parents were stunned. Reading disability in such a bright girl? What
were they to do? They decided to invite Angie’s aunt for a coffee conference the
next day to try to put the puzzle together.
At coffee, Angie’s mom added an interesting twist to the story: ‘‘Ever since we
decided to pursue this testing, I have had this sinking déjà vu that I couldn’t quite
pinpoint, but it just came to me this morning. Remember when I spent that summer
after first grade at the college department of education clinic, being a guinea pig for
those graduate students practicing their teaching methods? And how hard reading
was for me all the way through grade school? Well, it is flashback time now: Angie
is me all over again.’’ Angie’s mom needed some support from both family
members and professionals to get around her fear that Angie was doomed to
struggle throughout her school career. At this point, Angie’s aunt felt that it
would be best for the family to have some additional expert consultation outside
of school, so she referred Angie for a neuropsychological evaluation to clarify the
apparent emerging reading disability and to add other relevant recommendations
for intervention.
Test Results
The evaluators considered all Angie’s results from the school’s testing valid and
reliable, because her effort, cooperation, attention, stamina, self-control, mood, and
social response were positive throughout all sessions. She was aged 5 years and 6
months at the time.
Angie’s overall intelligence was in the high average range, with no significant
difference between verbal and nonverbal reasoning abilities, including some
strongly above average subskills in each domain. Although none of the academic
skills tested at school were below average, indicators of alphabet knowledge,
beginning visual cue word recognition, and letter-sound awareness were in the
lower half of the average range. Graphomotor (paper and pencil) skills were
average, and math reasoning was high average to above average. In contrast, both
phonological awareness and rapid naming were mildly impaired and significantly
discrepant from verbal reasoning (Tables 17.1–17.3).
Some children have had enough relevant testing prior to referral for pediatric
neuropsychological evaluation, so that little or no further testing is necessary. In
these cases, the pediatric neuropsychologist assumes the role of a consultant,
explaining results coherently to parents and helping to flesh out an optimal treat-
ment plan. This is what happened with Angie.
Several other domains of neuropsychological functioning could have been
assessed for thoroughness, including manual dexterity, other basic sensory and
17 Sorting Sounds: Reading Disability with Phonological Awareness Deficit 161

Differential Abilities Scale Scorea Percentile
Verbal cluster 112 79th
Nonverbal cluster 107 68th
General cognitive ability 110 75th
Verbal comprehension [49] 46th
Naming vocabulary [65] 93rd
Picture similarities [68] 96th
Pattern construction [43] 24th
Copying [51] 54th
Early number concepts [55] 69th
a

Woodcock Johnson Tests of Score Percentile Grade Equivalent
Achievement – Third Edition, Form A
Letter-word 93 33rd K.1
Passage comprehension 101 53rd K.8
Word attack 92 30th <K.8
Spelling 98 45th K.2
Writing samples 95 38th <K.8

Comprehensive Test of Phonological Processing
Phonological awareness 76 5th
Phonological memory 91 27th
Rapid naming 76 5th
Elision (6)
Blending words (6)
Sound matching (7)
Memory for digits (9)
Nonword repetition (8)
Rapid color naming (5)
Rapid object naming (7)
motor skills, memory, receptive and expressive language, attention, executive

mental functions, and other categories of academic skill included in the federal
guidelines for learning disability in the Individuals with Disabilities in Education
Improvement Act (Table 17.4). In addition, from a psychometric perspective, zero
162 R.F. Newby
Table 17.4 Categories of learning disability in federal special education law

l Oral expression
l Listening comprehension
l Written expression
l Basic reading skill
l Reading fluency
l Reading comprehension
l Mathematics calculation
l Mathematics problem solving
or very low raw scores on several subtests raised questions about whether those
skills were being sampled with adequate range of item difficulty.
The decision was made against further testing in this case for three main reasons:
First, neither Angie’s history nor the testing already completed raised concerns in any
of these other domains. Second, there is something to be said for pragmatic focus to
conserve health care and rehabilitation resources. For instance, what if Angie’s
parents wanted to consider marshalling family funds to buy out-of-school tutoring
services more than exhaustive testing? Third, the psychometric considerations were
outweighed by the consistency of the pattern in data from all available resources.
In this relatively basic neuropsychological profile, a clear pattern of solid, roughly

equivalent core verbal reasoning and visual-spatial problem-solving is seen, con-
trasting subtly but not convincingly with some low average early academic skills.
Clinicians commonly observe that formal academic achievement test scores
obtained at kindergarten or early elementary age often do not capture the emerging
struggles of many students who eventually have learning disabilities. Early testing
also often fails to find a large aptitude-achievement discrepancy that comprises a
cornerstone of the traditional and legal definitions of LD, which have been seriously
questioned in recent research and scholarly discussion. Keeping these caveats in
mind, the most salient aspects of Angie’s profile consisted of her difficulties in
phonological awareness and rapid naming. These red flags triggered the recom-
mendations by the IEP team outlined earlier. Without formally classifying Angie
into special education services, the team was advising a trial to determine her
response to intervention as a prestep to special education.
Angie was considered at risk for word reading disability or developmental
dyslexia, which is the most common type of learning disability. The pattern can
range from mild to severe, so even highly qualified professionals sometimes
disagree about when to apply the diagnosis. The main learning difficulty in word
reading disability involves recognizing or decoding words in reading, but secondary

difficulties in spelling, written expression, reading comprehension, memorizing
math facts, or math word problems often accompany the key word recognition
deficit.
Early problems in learning the alphabet, writing letters and numbers, associating
letters with their sounds, or rhyming can place a child at risk for dyslexia, but many
children outgrow these problems and become normal readers. For this reason,
reading disability is often not diagnosed until at least second grade and often not
until the child has been exposed to an appropriate form of extra help in reading
beyond the regular classroom.
The underlying cognitive processing cause in almost all cases is a core deficit in
phonological awareness, including segmenting words into component sounds,
blending sounds together, and associating letters and letter clusters with their
appropriate sounds. Some children with reading disability also show reduced
speed in reading symbols (letters and numbers) and/or naming commonly recog-
nized items (colors and pictures of objects); this type of rapid naming deficit often is
associated with slow reading fluency or speed, as discussed more thoroughly in the
Chaps. 19 and 20.
Because a subtle difficulty in specific aspects of language processing in the brain
is implied in a diagnosis of reading disability, it is important to rule out environ-
mental causes such as inappropriate instruction when making the diagnosis. Al-
though a growing body of research is beginning to clarify what this brain processing
problem may be, no reliable medical tests have been developed yet to establish the
diagnosis. Many children with reading disability have immediate or extended
family members with similar problems, and there is strong scientific evidence
that the phonological processing problems underlying this pattern can be genetic.
Myths about dyslexia can mislead families who are trying to get appropriate help
for their children, especially the idea that the learning problem is caused by a
detectable basic vision difficulty, such as eye tracking.
In light of an ample body of outcome research in reading interventions, built on
the knowledge base outlined in the previous paragraph, the following recommenda-
tions were made for specific instructional techniques for Angie.
Children with phonological awareness deficits are at risk for reading disabilities
and usually need extra training in segmenting and relating sounds in oral speech.
This is called phonemic awareness training. Phonemic awareness is a more basic
process than traditional phonics training, which focuses on the correspondence
between written letters and sounds in speech. Recent research suggests that most
children in kindergarten or first grade can learn these prephonics skills through
regular exercises in which they carefully listen for and articulate phonemes in oral
speech, break words into sound components or phonemes, match similar sounds in
words, and detect or produce rhyming words. Older children who already have
diagnosed reading disabilities also may benefit from this type of training, but it
takes a lot more time to achieve the benefit.
Work on traditional phonics skills should be emphasized in Angie’s reading
program. The most effective phonological development components in reading
164 R.F. Newby
research at this time involve systematic review of basic phonics elements, such as
letter sounds when needed; practice in segmenting short words in print; blending
methods, such as orally stretching out the sounds in words; contextual application
of analytic phonics methods, such as word families; and an integration of reading
and writing activities. Reading decoding work should focus on reading material that
is at Angie’s instructional level for word recognition at any given time.
Angie probably will need extra instruction in some aspects of written language,
particularly spelling. It is often most helpful to have children focus on spelling words
that are integrated with their reading curriculum and/or words that are grouped together
in phonologically related word families. The use of a ‘‘word wall’’ would be helpful for
Angie. In classroom application, this consists of a list of words on the wall, grouped
according to their beginning letters alphabetically, to which children can refer when
doing written work. Children are expected to spell correctly all words on the word wall
in their written work, and words are gradually added as they are taught in the curricu-
lum. Easily confusable similar words (e.g. what, when) are printed on different
colored paper and cut out with the outline shape closely following the configuration
of the letters in the word. This type of system can be individualized with a chart on
the child’s desk if the child is working at a lower level than the overall class or if
this type of system is not usable in the whole class format. In the long run, if
Angie’s spelling development does not fully normalize, the goal may be for Angie
to spell reliably a circumscribed list of commonly used words.
Parents and school staff should monitor Angie’s progress closely in the related
areas of reading fluency, reading comprehension, sentence construction, paragraph
structure, and organization of longer written products, in case extra instruction in
these areas becomes necessary.
Update
The end of Angie’s story? Taking advantage of the extra instruction available at
school during kindergarten and first grade, her aunt’s expertise in after-school
tutoring during weekends and summers, a semester in the small-group reading
program at the very same college clinic her mother had attended, and the wonderful
additional knowledge they gained by reading Dr. Sally Shaywitz’s book for parents
and teachers, Overcoming Dyslexia, Angie and the adults working with her accom-
plished just what the title of Shaywitz’s book says. Now in second grade, Angie
reads just above the average range in all three of the key areas of word decoding,
fluency or speed, and comprehension. Her spelling is still a little below average, but
in her free time she is already composing clever plays for her friends to act out.
Researchers in reading intervention now estimate that the majority of cases (with
numbers ranging from 75% to as high as a perhaps overoptimistic 95%) of ongoing
reading disabilities essentially could be prevented by the type of early identification
and intervention that Angie received.
Three other case examples, which illustrate variations that deserve the keen eye
of the sophisticated clinician, will be considered in the next chapters to further
elaborate on Angie’s case, which represents a prototype of a well-assessed and

properly treated positive outcome in a young child with the most common kind of
phonological processing deficit.
Dyslexia The International Dyslexia Association IDA Board of Directors, on

November 12, 2002, adopted the following definition, which is also used by the
National Institute of Child Health and Human Development (NICHD):
Dyslexia is a specific learning disability that is neurological in origin. It is characterized
by difficulties with accurate and/or fluent word recognition and by poor spelling and
decoding abilities. These difficulties typically result from a deficit in the phonological
component of language that is often unexpected in relation to other cognitive abilities and
the provision of effective classroom instruction. Secondary consequences may include
problems in reading comprehension and reduced reading experience that can impede
growth of vocabulary and background knowledge.
Individualized Education Program (IEP) Defined by federal law, an IEP means a

written statement for each child with a disability that is developed, reviewed, and
revised in a meeting including school staff and parents. Each IEP must include
statements of the child’s present levels of academic achievement and functional
performance, measurable annual goals, how the child’s progress toward meeting
the annual goals will be measured, the special education and related services and
supplementary aids and services to be provided, and any individually appropriate
accommodations necessary to measure the academic achievement and functional
performance of the child on state and district-wide assessments.
Phonological Awareness An individual’s awareness of and access to the sound
structure of his or her oral language. Overlaps with or is sometimes used synony-
mously with phonemic awareness.
References
Adams, M. J., Foorman, B. R., Lundberg, I., & Beeler, T. (1998). Phonemic awareness in young
children: A classroom curriculum. Baltimore, MD: P. H. Brooks Publishing.
Blachman, B. A., Ball, E. W., Black, R., & Tangel, D. M. (2000). Road to the code: A phonologi-
cal awareness program for young children. Baltimore, MD: P. H. Brooks Publishing.
Fletcher, J. M., Lyon, G. R., Fuchs, L. S., & Barnes, M. A. (2007). Learning disabilities: From
identification to intervention. New York: Guilford Press.
166 R.F. Newby
Harris, K. H., & Graham, S. (2005). Handbook of learning disabilities. The Guilford Press.
Pennington, B. F. (1991). Diagnosing learning disorders: A neuropsychological framework. New
Spear-Swerling, L., & Sternberg, R. J. (1994). The road not taken: An integrative theoretical model
of reading disability. Journal of Learning Disabilities, 27(2), 91–103, 122.
United States Department of Education, Office of Special Education Programs. IDEA – Building
the legacy of IDEA 2004. Retrieved November 21, 2007, from http://idea.ed.gov/explore/home
Wagner, R. K., Torgesen, J. K., & Rashotte, C. A. (1999). Comprehensive test of phonological
processing (CTOPP). Austin, TX: Pro-Ed.
International Dyslexia Association, http://www.interdys.org

LD OnLine, http://www.ldonline.org/
Shaywitz, S. E. (2003). Overcoming dyslexia: A new and complete science-based program for
reading problems at any level. New York: A. A. Knopf.
Chapter 18
Well Compensated But Never Quite Solved:
Lingering Dyslexia
Robert F. Newby
Tim, whose family owned a bookstore, first came for evaluation in third grade to
explain and provide recommendations for his academic struggles, particularly in
reading, spelling, written language, and memorization of math facts. He then came
for two separate evaluations during middle and high school. The longitudinal
information thus available about the progression of his reading problems illustrates
a common case of partially remediated word reading disability.
At the time of Tim’s first evaluation, his math reasoning, penmanship, and
attention in school were inconsistent, but his written expression was remarkably
strong. Tim’s second and third evaluations were conducted to update his progress
and determine whether ongoing accommodations and/or additional interventions
were needed in his high school or college work. His effort and cooperation at all
three evaluations were quite sufficient to ensure that the reported results were valid
and reliable.
Tim’s medical history was basically noncontributory over the years. He was
prescribed glasses for nearsightedness since late elementary school, with regular
checkups. His social and emotional functioning were positive. Throughout his
school career, he attended parochial schools with good learning support services,
received extra reading and writing instruction both at and outside of school, took
advantage of curriculum accommodations such as oral testing and books on tape,
put in the extra academic effort that students with learning disabilities usually need,
and used his good social skills to both maintain a satisfying nonacademic life and
advocate for himself with teachers at school.
Third Grade Test Results
Tim’s first evaluation included intellectual, academic, and selected information

processing skills that could be related to his learning struggles (Tables 18.1–18.3).
Tim showed average verbal comprehension and high average perceptual organi-
zation, two key factors that have appeared recurrently in factor analysis of the

168 R.F. Newby

Wechsler Intelligence Scale for Children – Revised Scorea Percentile
Verbal IQ
Information (10) 50th
Arithmetic (5) 5th
Vocabulary (10) 50th
Digit Span (9) 37th
Performance IQ
Picture Completion (9) 37th
Picture Arrangement (13) 84th
Object Assembly (11) 63rd
Coding (6) 10th
a

Tests Score Percentile Grade equivalent
Woodcock Reading Mastery Test – Revised
Word Attack 67 1st 1.3
Letter-Word Identification 70 2nd 2.1
Passage Comprehension 74 4th 2.1
Wide Range Achievement Test – Revised
Spelling 67 1st 1E
Woodcock Johnson Psychoeducational
Battery – Revised
Calculation 72 3rd 2.2
Applied Problems 98 43rd 3.6
Qualitative Reading Inventory

Grade Type Words per minute Accuracya Comprehensionb
Primer Narrative 52 89% 75%
1 Narrative 36 78% 50%
a
Instructional level >90% oral reading accuracy.
b
Instructional level >70% comprehension.
Wechsler scales, in this case the Wechsler Intelligence Scale for Children (Revised)
(WISC-R). Math reasoning skills and memory were also average. The deficits in
this profile could be grouped into four main areas that illustrated a classic presenta-
tion of reading disability or developmental dyslexia, accompanied by some com-
mon comorbidities, most of which were fortunately mild or marginal in Tim’s case.
First, Tim was very impaired in phonics analysis (word attack or reading of
nonwords) and reading word identification. In Pennington’s (1991) scheme, these
were primary or core symptoms of his reading disability (Table 18.4).
Second, Tim’s associated marked deficits in spelling and reading comprehension
were considered as secondary symptoms. Written expression was not assessed in
18 Well Compensated But Never Quite Solved: Lingering Dyslexia 169

Tests Raw Score Percentile Age Interpretation
score equivalent
Vigilance task
Correct/45 38 Borderline
Commission errors 1 Normal
Beery-Buktenica Developmental Test 86 18th 7–2
and Learning
Table 18.4 Tim’s symptoms in Pennington’s (1991) scheme

l Primary: Phonics analysis and reading word identification
l Secondary: Spelling and reading comprehension
l Correlated: Math calculations
l Artifactual: Graphomotor and attention
this set of testing but was reported to be quite satisfactory in his everyday school
performance, setting aside factors such as penmanship and spelling.
Third, Tim showed correlated symptoms in math calculations, with relatively
preserved math reasoning at that time. A number of hypotheses about the possible
information processing links between reading disability and difficulties memoriz-
ing math facts have been presented in the professional literature, ranging from
working memory to processing of symbols, but consensus on a single explanation
has not yet emerged.
Fourth, Tim was low average or borderline impaired in two areas that could be
considered artifactual symptoms, meaning that they appear at an increased prevalence
in children with reading disability compared with base rates in the general population
but that they do not have compelling direct links with the cognitive systems or
underlying neural systems, which cause the primary deficits in reading disability.
Mildly reduced graphomotor (paper and pencil) skills were evident in both his copying
geometric drawings and his low efficiency in a clerical copying task. He also showed
modest attention issues in the latter finding, in his number of items correct on a
computerized continuous performance task and in his mental math performance.
Third Grade Formulation and Recommendations
Recommendations included a strong emphasis on remediation of core and second-

ary deficits, along with compensatory approaches to reduce the ongoing impact
of these deficits in the broad school curriculum. The main recommendations were
170 R.F. Newby
the same as for Angie in the previous case description, plus the following two
strategies.
Tim’s reading speed, or automaticity, could be enhanced with repeated reading
and/or a set of recently developed instruction methods called retrieval, automaticity,
vocabulary elaboration, orthography (RAVE-O). In repeated reading, Tim is asked
to read some books, chapters, or stories repeatedly (3–5 times) within a several-day
period. He should not be asked to do this with all reading materials—which would
turn off anyone to reading! This method should gradually help Tim enter more
words into his automatic sight-vocabulary. A variation of repeated reading is to
have a parent or peer read orally along with Tim, either with the assisting reader
reading all the words at the same pace that Tim reads or with the assisting reader
providing only those words that Tim cannot decode immediately himself, to help
smooth out the flow of reading. These methods should be done with reading
material at Tim’s comfortable instructional level for reading connected text.
Tim should make use of audio-taped books in school. This will allow him to listen
to textbooks while reading and following along, which can enhance his opportuni-
ties to use and remember information in science, social studies, and literature.
Eighth Grade Test Results, Formulation, and Recommendations
Only partial reevaluation was needed at the end of middle school, in order to help
Tim qualify for continued learning support services in high school (Tables 18.5 and
18.6). Assessment procedures were chosen to update previous areas of concern and
to document current academic impairments and associated information processing
deficits.
Tim showed three types of improvement at this time. The first type, probably
representing actual reduction in primary symptoms in response to cumulative
effects of treatment, included an increase from around the first percentile to around
the 15th percentile in his primary symptoms of phonics analysis and reading word
identification. Additional test evidence about the ‘‘layer of language under
phonics’’ was available at this time, that is, the Rosner, which was a forebear of
the Elision subtest from the Comprehensive Test of Phonological Processing
(CTOPP), suggesting that Tim’s phonological awareness was at a similar level
as phonics analysis. Reading speed, however, remained slow.
In secondary symptoms, on the one hand, Tim demonstrated continuing poor
spelling, which comprised most of his errors on the Dictation subtest from the
Woodcock-Johnson-R. On the other hand, he was showing some strong compensa-
tion in several more cognitively complex areas, also probably in response to
treatment. Specifically, his reading comprehension was average or near average
on different measures, which was significantly better than his underlying reading
decoding skills. He appeared to be using both his verbal reasoning and memory
abilities as well as reading strategies that were explicitly taught in tutoring to
bootstrap this important end product of the global reading process to a higher

Tests Score Percentile Grade
equivalent
Woodcock Johnson Psychoeducational Battery – Revised
Applied problems 66 1st 4.0
Dictation 72 3rd 3.5
Supplemental battery

Grade Type Words per minute Accuracya Comprehensionb
6 Expository 86 95% 75%
7/8 Expository 75 93% 60%
a
Instructional level >90% oral reading accuracy.
b
Instructional level >70% comprehension.

Tests Raw Score Percentile Age Interpretation
score equivalent
Vigilance task
Correct/45 42 Normal
Commission errors 2 Normal
Rosner Test of Auditory Awareness 87 19th
Skills
Beery-Buktenica Developmental Test 105 66th 14–15
and Learning
Story memory (11) 63rd
level than would have been predicted on the basis of his elemental word reading
capacity at that time. Although written expression had not been assessed in the
earlier testing, precluding a direct comparison across time in this area, he demon-
strated well above the average skill, at least at the sentence composition level in a
testing format that did not penalize for errors in more basic areas such as spelling.
Tim’s third type of improvement probably represented fluctuation in artifactual
symptoms over time, rather than true gain in underlying skills: Testing of both
graphomotor skills and attention was in the average range.
As an aside to his primary reading disability, Tim showed very little growth in
math reasoning since his third grade evaluation. On close examination, two factors
172 R.F. Newby
seemed responsible for this disappointment. His errors in applied math problems
during the testing were almost always due to calculation mistakes, illustrating his
continuing delay in memorizing math facts. In addition, his school had not accom-
modated his reading difficulties in the math curriculum, for instance, by providing
oral presentation of math word problems, which artificially limited his cumulative
learning and practice in the latter area. This error was corrected with remedial
applied instruction in high school. The most important recommendation for reading
and written language during Tim’s high school years was that Tim should continue
to make use of audio-taped books in school.
Eleventh Grade Test Results
Tim’s final evaluation (Tables 18.7 and 18.8) had the sole purpose of providing
documentation for similar services and accommodations at college as he had
received earlier. Although some organizations, such as college entrance examina-
tion services, specify more extensive domains to be tested for documentation of
learning disability (usually including at least intelligence, academic skills, and
relevant information processing areas), Tim had scored well enough for admission
to his first-choice college on his initial ACT under standard testing conditions, so
some of the more detailed testing that usually would have been required for this
particular purpose turned out to be not necessary, and the college itself was flexible
in considering the history of his previous evaluations with a brief update.

Woodcock Johnson Psychoeducational Score Percentile Grade
Battery – Revised equivalent
Broad reading 87 19th
Passage comprehension 97 41st 10.1
Dictation 82 11th 6.0
Writing samples 121 92nd 16.9

Wide Range Assessment of Memory and Learning Score Percentile
Story memory (11) 63rd
Eleventh Grade Formulation and Recommendations
Tim’s level and pattern of performance were very similar to the eighth grade
evaluation, indicating stability of both deficits and compensations over time. The
following strategies were emphasized at this time.
Tim should continue receiving extra remediation outside the regular classroom for
his learning struggles, particularly advanced reading decoding and reading fluency.
Although earlier efforts focused most heavily on reading and language, some more
recent attention to math skills may need to be added during his senior year as he
finishes high school requirements for graduation. He should continue using compen-
satory technologies such as a calculator in math (although some further drilling of
math facts is needed rather than 100% reliance on a calculator) and a word processor
for written language (with particular emphasis on use of a spelling checker).
In addition to required reading for school and practice reading for his tutoring
outside of school, Tim should read regularly for pleasure, including rereading
materials to which he is particularly attracted, to increase reading speed or fluency.
Tim should continue to make use of audio-taped books in school.
Spelling instruction at this age should be limited to very-high-frequency words
actually to build a basic repertoire rather than to attempt to spread Tim too thin with
a wide repertoire of known spelling words.
Tim probably will require extra time to complete academic requirements in
classes with a heavy load of reading or writing. This could be facilitated by arranging
for him to take a reduced course load, both during the remainder of high school and at
the college level. Shortened assignments at school would be relevant in many subject
areas, particularly when extensive reading or writing is required.
If Tim is required to take further standardized, group-administered testing in the
future, it should be conducted with extended time limits and with auditory presentation
(e.g., audiotape and headphones) to accompany all reading material in content areas
that are not designed specifically to assess reading comprehension (e.g., social studies).
This type of accommodation also would be justified in testing for classes at school, if
requested. On testing in which written answers are required, errors in spelling,
punctuation, capitalization, and word usage should not be penalized, and oral answers
should be allowed or encouraged so Tim can elaborate on his written answers.
Tim’s mother appropriately wants to support his self-confidence and self-esteem
by helping him understand his dyslexia as fully as possible. Some discussion of this
issue was conducted in a follow-up feedback interview on the day of testing with
Tim and his parents. Further counseling or information in this area should be made
available if he requests.
Update
Tim began high school intending to take advantage of a strong instrumental music
program there and then to pursue a career in music teaching. Along the way,
however, he discovered a love of American literature, in which he majored at a
174 R.F. Newby
small local college, from where he recently graduated. He will take his place as the
front desk manager in his family’s bookselling business, having worked various
other part-time jobs in their stores throughout his high school and college years.
Imagine – a student with dyslexia running a bookstore!
Phonological Awareness An individual’s awareness of and access to the sound

structure of his or her oral language. Overlaps with or is sometimes used synony-
mously with phonemic awareness.
References
Adams, M. J., Foorman, B. R., Lundberg, I., & Beeler, T. (1998). Phonemic awareness in young
children: A classroom curriculum. Baltimore, MD: P. H. Brooks Publishing.
Blachman, B. A., Ball, E. W., Black, R., & Tangel, D. M. (2000). Road to the code: A phonologi-
cal awareness program for young children. Baltimore, MD: P. H. Brooks Publishing.
Harris, K. H., & Graham, S. (2005). Handbook of learning disabilities. New York: Guilford Press.
Pennington, B. F. (1991). Diagnosing learning disorders: A neuropsychological framework. New
Spear-Swerling, L., & Sternberg, R. J. (1994). The road not taken: An integrative theoretical model
of reading disability. Journal of Learning Disabilities, 27(2), 91–103, 122.
The Center for Reading and Language Research, Tufts University. The RAVE-O program:
A comprehensive, fluency-based reading intervention program. Retrieved November 21,
2007, from http://www.ase.tufts.edu/crlr/raveo.html.
United States Department of Education, Office of Special Education Programs. IDEA – building
the legacy of IDEA 2004. Retrieved November 21, 2007, from http://idea.ed.gov/explore/
home.
Wagner, R. K., Torgesen, J. K., & Rashotte, C. A. (1999). Comprehensive test of phonological
processing (CTOPP). Austin, TX: Pro-Ed.
International Dyslexia Association, http://www.interdys.org.

LD OnLine, http://www.ldonline.org/.
Recording for the Blind & Dyslexic, http://www.rfbd.org/.
Shaywitz, S. E. (2003). Overcoming dyslexia: A new and complete science-based program for
reading problems at any level. New York: A. A. Knopf.
Chapter 19
Emily Confronts Her Fiercest Bear:
Word Reading Disorder with Naming
Speed and Phonological Deficits
Molly Darke Shiffler
The winding road leading through the forest grew narrower and darker until it
tapered into a two-track lane where gravel and horseshoe prints dotted the slippery
surface of compacted snow. The reading specialist was feeling almost lost in that
dark subzero landscape when the lights of a small enclave shone through the thick
woodland. Set in a ring encircling an oval-shaped forest clearing, the windows of
the hand-built fieldstone homes glowed with the serenity of an illustration from Van
Allsburg’s Polar Express. Centered in the clearing stood a snow-patched barn,
a maze of hound dog runs, sleigh-ride facilities, and a shed reserved for bear
hunting gear—mainstays of Emily’s family’s lifestyle for three generations. That
December night, thankfully, the local bears did not make one of their routine visits.
The reading teacher was visiting Emily’s home because her slow reading pace,
labored decoding, and sharp contrast between listening comprehension and reading
comprehension echoed the reading patterns of an older generation living in those
softly lit houses who had been students in the school district’s first Title I elemen-
tary reading program 30 years ago. Informal assessment at school indicating slow
reading rates (16 words per min) and weak phonological segmenting skills had
suggested that Emily was at risk for double-deficit dyslexia, a form of reading
disorder as formidable as any bear. Her parents described her as an inquisitive,
bright child who struggled with reading, math facts, and writing, especially noting
reversed words in reading and letters in writing. Her birth and developmental
history were not significant for illnesses, injuries, or serious medical conditions.
Milestones included speaking single words at 8–9 months, composing sentences at
1 year, and walking at 10 months. Family history included dyslexia for Emily’s
father and his two brothers, although her father felt that his reading difficulty
resulted from lack of effort and his own father’s habit of withdrawing his sons
from school to help in the woods and fields.
Kindergarten screening with Emily had shown difficulty copying basic shapes,
printing her name, and articulating a few speech sounds—/t/, /sh/, /l/, and /ch/.
Her kindergarten teacher reported that, although Emily could recognize and

176 M.D. Shiffler
produce rhyming words, the retention and recall of letter names and sounds were
difficult for her, and that Emily was not using sound-symbol correspondence in her
developmental writing at the end of kindergarten. Emily was placed in the kinder-
garten and first grade Title I programs, received extra help from her teachers at
lunch time, and participated in a literacy mentoring program staffed by community
volunteers. It became evident that Emily’s extra literacy support was not enough to
ensure proficient reading. Neither her sight vocabulary nor phonic skills were
automatic, although she was somewhat faster at sight words than at pseudowords.
In the middle of first grade, Emily qualified for learning disabilities programming.
Although her standard achievement scores appeared to be in an average range, the
placement was based on the discrepancy between achievement scores and her
overall intellectual functioning in a superior range.
Emily began receiving reading and writing intervention approximately 8 hours
per week in a resource room setting that included a phonological analysis and
blending program and a structured phonological encoding program with writing
exercises. She was felt to have good long-term memory but tended to retrieve
information slowly. She tended to be fidgety and was apt to play with items in her
hands or mouth. Connors’ Rating Scales-Revised, completed by parents and tea-
chers, indicated scores in the risk-significant range (T-scores above 70) on inatten-
tion, hyperactivity, and cognitive indexes. Emily was placed on methylphenidate
for attention deficit hyperactivity disorder (ADHD). Despite this combination of
treatments, her reading progressed very slowly
One promising approach for students like Emily who have not responded to
phonological interventions derives from a growing body of research based on
double-deficit hypothesis. As currently conceptualized, double-deficit dyslexia
encompasses both phonological deficits and naming-speed deficits, which impede
rapid recognition of visually presented verbal stimuli. The proposed double-deficit
hypothesis represents a substantial paradigm shift in understanding severe reading
disabilities. At the present time, there is fairly widespread agreement that phono-
logical deficits (difficulty with linguistic operations such as blending, identification,
segmenting, retrieval, and memory on the basis of the sounds of speech) play a
major causative role in reading disabilities. Wolf, Bowers, and Biddle (2000),
however, have proposed that phonological deficits alone do not account adequately
for all reading disabilities and that a separate naming-speed deficit (in the processes
underlying the rapid recognition and retrieval of visually presented verbal stimuli)
represent a separate core deficit in readers with specific reading disabilities. Hence,
the term double-deficit hypothesis refers to phonological deficits and naming-speed
deficits as independent but not exclusive processes impacting the reading of
students with word reading disorders. In other words, struggling readers might
exhibit a phonological deficit, a naming-speed deficit, or a double-deficit composed
of both phonological and naming-speed deficiencies.
The impact of naming-speed deficits on reading disabilities can remain perva-
sive even into the adult years; in fact, several studies measuring factors associated
19 Emily Confronts Her Fiercest Bear 177
with word reading disorders found naming-speed deficit to be the single variable
differentiating adults with reading disabilities from control groups. Reading practi-
tioners often encounter high school students referred for diagnostic reading testing
with reading rates of 20–40 words per min below standard fluency norms, below
average scores on comprehension measures, and history of difficulty learning letter
names and sight words.
Test Results
Both processing deficits and achievement deficits were measured, and more than
one test measured each construct to sustain construct validity (Fig. 19.1). Since the
intervention program in Emily’s district was designed to address phonological,
naming speed, or both deficits, a core group of assessments was specified to
determine severity of deficit both at processing and single word application levels.
The assessment measures and criteria for determining placement in phonological
and naming-speed subtype groups are diagrammed in Fig. 19.2, which shows that
multiple measures were also used to assess naming-speed processing.
On the WISC-III administered at age 6 years and 11 months by the district’s
elementary psychologist, Emily obtained a Full Scale IQ of 121, which placed her
intellectual functioning in the Superior range. Comparison of Verbal (VIQ 114) vs.
Performance (PIQ 123) scores indicated that Emily did not differ significantly on
tasks requiring verbal ability and nonverbal ability (Table 19.1).
Emily’s ability to rapidly name the series of alphanumeric symbols (numbers
and letters) on the CTOPP rapid naming subtests and the single words on both timed
TOWRE subtests was extremely compromised; these scores were significantly
disparate from her WISC-III scores in the Superior classification (Table 19.2).
In addition, her reading rate on a familiar grade 2 narrative passage on the QRI-3
Assessment
Construct Clusters
Phonological Naming-Speed Word Decoding Comprehension

Processing/ Processing/ Reading Measures Measures
Application Application Measures
Measures Measures
CTOPP1 Elision CTOPP RDN WRMT-R WI WRMT-R WA WRMT-R

CTOPP Blending CTOPP RLN TOWRE SWE TOWRE PDE Passage Comp.
TOWRE3 PDE RAN/RAS2 WRAT-3 Rdg. WRAT-3 Splg. QRI-3 Rdg. &
WRMT-R WA TOWRE SWE % GFE's Listening Comp.
Fig. 19.1 Testing grouped by assessment construct clusters

178 M.D. Shiffler
Fig. 19.2 Processing and achievement tests and criteria used for deficit determination

Full scale IQ 121 92nd
Verbal IQ 114
Information (12) 75th
Arithmetic (13) 84th
Digit span (10) 50th
Performance IQ 123
Picture completion (14) 90th
Picture arrangement (18) 99th
Block design (11) 63rd
Object assembly (10) 50th
Symbol search (14) 90th
Mazes (12) 75th
a
was at 16 words per min correct—well within frustration level (Table 19.3).
According to miscue analysis on the QRI-3, Emily had begun to develop some
basic phonological decoding skills, including consonant-vowel-consonant patterns
and consonant digraphs (-sh, -ch), although, even on two and three-phoneme words,
she blended words very slowly. She made neither long and short vowel general-
izations nor could she consistently elicit both sounds when reading a two-letter
consonant blend (pl-); even as a second grader, she still had difficulty correctly
decoding final consonants on three-letter words.

Phonological awareness composite 42nd
Elision 25th
Blending 63rd
Rapid naming composite 5th
Rapid digit naming 9th
Rapid letter naming 9th
Test of Word Reading Efficiency
Sight word efficiency 81
Phonological decoding efficiency 82

Tests Raw score Score Percentile
Woodcock Reading Mastery Test – Revised
Word identification 84 14th
Word attack 90 25th
Wide Range Achievement Test – Third Revision
Spelling 100 50th
Reading 82 12th
Qualitative Reading Inventory 16 words per minute correct
Reading comprehension 1/8 correct
Listening comprehension 8/8 correct
Grade 2 passage 52/70
Test of Written Language – Third Edition 100 50th
When formally measured on the WRMT-R Word Attack subtest with its lenient
5-s-per-word time allowance, Emily’s decoding skills appeared to be in the average
range (although significantly disparate from her IQ); however, when a timing
component was added to a nonsense-word reading task, her deficits in phonological
decoding were much more apparent. Measures of word reading were more de-
pressed than the decoding testing cited. In fact, standard scores achieved on the
three formal word reading measures were within 3 points of each other; there was
no difference between the TOWRE’s stringently timed Sight Word Efficiency and
Phonemic Decoding Efficiency subtests.
The WRMT-Passage Comprehension subtest consists of phrases, sentences, and
paragraphs in which one word is missing; the student is to read the connected text
and supply the missing word. Once again, although Emily’s standard score of 91
appeared to be in the average range, comparison with her Full Scale IQ of 121
revealed a discrepancy of 2 standard deviations. The QRI-3 gave a profile of
Emily’s functional reading achievement that closely resembled the pattern her
classroom teachers described. On a second-grade familiar narrative passage,
Emily was able to read at only 16 words per min (frustration level) and had an
180 M.D. Shiffler
accuracy rate of 74% (frustration level). Comparing Emily’s listening and reading
comprehension levels using the familiar narrative grade 2 passages from the QRI-3
demonstrated the sharp contrast between her cognitive and word recognition
abilities. On the QRI-3 passage, which Emily read aloud, she answered one of
eight questions correctly. In contrast, when the examiner read a passage of
corresponding length and difficulty to her, she was able to obtain a perfect score
by answering all eight questions correctly.
Emily’s decoding, word identification, and alphanumeric naming automaticity were

strikingly disparate from her superior general cognitive skills. Although her phono-
logical processing and untimed decoding achievement scores appeared to be in an
average range, they were, in fact, significantly discrepant when juxtaposed with her
intellectual functioning that was in the superior range.
Since Emily had met regression-based aptitude/achievement discrepancy criteria
when she entered the district’s learning disability program prior to Double Support
project testing, it was not deemed necessary to determine whether she qualified as
reading disabled at the time of the specialized additional assessment described in
the previous section. At first viewing, Emily’s CTOPP Phonological Awareness
composite quotient at 97 and 42nd percentile appeared too high to place her in the
double-deficit subtype group. After consultation, however, the reading specialist
determined that a double-deficit placement was justified when the following factors
were considered: (a) the discrepancy between CTOPP Elision score at the 25th
percentile, which met program criteria, and Blending score at the 63rd percentile
had been obscured when the two subtests were averaged to form the Phonological
Composite score (therefore, Emily qualified as phonologically-deficit according to
program criteria of 25th percentile or lower on either a single CTOPP subtest or
composite score); (b) the disparity, exceeding two standard deviations, between
Emily’s TOWRE Phonemic Decoding Efficiency score (82SS) and her WISC-III
Full Scale IQ at 121; (c) the 31 point discrepancy between her WRMT-R Word
Attack at 90SS and her FSIQ; and (d) comments from kindergarten and first grade
teachers noting Emily’s marked difficulty with phoneme-grapheme correspon-
dence, phonological decoding and encoding, and reading pseudowords.
Returning to double deficit criteria as displayed in Fig. 19.2, school and clinical
staff determined that Emily indeed had both phonological and naming speed
deficits because she met the following criteria: (a) achievement scores, as repre-
sented by her WRMT-R Word Identification and Word Attack standard scores, at
least one standard deviation discrepant from her Superior range WISC-III scores;
(b) her WISC-III Full Scale score was well above 90SS indicating Superior
intellectual abilities; (c) a phonological deficit as indicated by CTOPP Elision
and/or Blending scores at or below the 25th percentile; and (d) a naming-speed
deficit as indicated by either RAN/RAS or CTOPP Rapid Digit Naming and/or
Rapid Letter Naming scores at or below the 25th percentile. According to these
data, combined with comments from her teachers noting marked difficulty on
phonological tasks, Emily qualified for the Double Support intervention as having
both naming speed and phonological deficits.
As is typical of individuals with the proposed double-deficit, Emily’s primary
learning difficulty in word reading disability involved recognizing or decoding
words fluently in reading but secondary difficulties, aggregated by decreased
print exposure, include
a. Spelling because the orthographic/phonemic consolidation develops more
slowly
b. Reading comprehension because of attentional resources directed to decoding
and more difficulty storing information acquired at a slower rate
c. Written expression because of reduced exposure to orthography patterns and
print syntax.
Consistently, individuals with naming-speed and double deficit reading disabil-
ities show reduced speed in reading symbols (letters and numbers) and/or in naming
commonly recognized items (colors and pictures of objects) and slowed reading
speed. The rapid naming subtests of the CTOPP are often used to determine reduced
naming speed, while the alphanumeric subtests do not include such easily confused
orthographic symbols as b and d or p. For that reason, if a child appears to have
other naming characteristics but the CTOPP rapid naming subtests are not markedly
depressed, it may be advisable to administer the Rapid Automatized Naming/Rapid
Alternating Stimuli (RAN/RAS), which does contain frequently miscued alphanu-
meric symbols, as a second measure.
When considering a possible naming speed deficit, it is always important to rule
out any environmental factors that may have impacted naming fluency such as
limited opportunity for reading practice, chronic inappropriate (usually too diffi-
cult) texts, linguistic or dialectic code-switching, more pervasive cognitive condi-
tions, or limited visual acuity. Research has not shown a link between naming speed
and popular dyslexia explanations such as ‘‘eye muscle convergence,’’ ‘‘eye track-
ing,’’ color-sensitive filters, or readjusting visual perspective.
Characteristic reading patterns of phonological, naming speed, and double
deficit word recognition disorders observed by clinicians or literacy professionals
vary in several aspects as displayed on Table 19.4. Reading practitioners note that
students with phonological but not naming speed deficits, a literacy profile discussed
in previous chapters, tend to be relatively fast but inaccurate readers. Unable to
depend on decoding skills, they manage to use well-developed context-based word
recognition strategies to get the overall meaning of their reading; they often surprise
others with adequate comprehension in spite of numerous errors. On the one hand,
semantic substitutions, such as father for dad, that have no phonetic resemblance
182 M.D. Shiffler
Table 19.4 Patterns of skills of deficit groups assessed in grade 3

Naming speed deficit Phoneme aware deficit Double deficit
Word identification and attack Word identification and attack Word identification and
okay but less than no- relatively poor attack very poor
deficit group
Slower reading Faster reading Slowest reading
Poor spelling, especially Poor spelling, both dictation Very poor spelling, both
spelling recognition and recognition dictation and recognition
Poor orthographic [accuracy] Better or similarly poor Poor orthographic skill
skill orthographic skill
% [of students] below 25th % [of students] below 25th % [of students] below 25th
percentile on word percentile on word percentile on word
identification: 20–30% identification: 20–30% identification: 90%
From Dyslexia, Fluency, and the Brain (p. 44) by M. Wolf (Ed.), 2001, Timonium, MD: York
Press. Copyright 2001 by York Press.
but have similar meaning, frequently punctuate the oral reading of individuals with
phonological deficits. On the other hand, readers with naming speed deficits appear
to be consistently accurate but slow readers, dependent on sound-by-sound decod-
ing well-beyond the usual early elementary years; comprehension is sometimes
compromised. If the reader also has attentional issues, the rate may not be as slow
but numerous tracking errors are often evident. In the case of students with the
bifurcated deficit pattern, labored or absent decoding attempts, very slow rates, and
poor comprehension are all generally present.
For students like Emily who have double reading deficits, both phonological
and naming-speed intervention should be addressed in any recommendations.
The naming-speed reading model proposes that processing speed may be inade-
quate at one or more sequential levels (visual features of individual symbols;
grapheme recognition; grapheme/phoneme assignment; visual, auditory, and se-
mantic lexical access; syntactic integration; comprehension; and articulation).
At the present time, only the RAVE-O intervention is specifically designed to
address each of the levels in the proposed naming speed sequence. This early
elementary level (grades 2–3) reading intervention connects phonemic analysis
and blending skills with fluency training at orthographic pattern, word, and sen-
tence level incorporating adequate exposure to frequently used sublexical units
(examples, re-, sh-, -ip, -ake) for increased word recognition fluency. RAVE-O
addresses three equivalent goals:
a. Increased achievement in overt word identification, decoding, and comprehen-
sion
b. Automaticity in underlying phonological, orthographic, semantic development,
sublexical, and lexical processes
c. Improved self-efficacy through metacognitive use of decoding and retrieval
strategies
The program consists of about 30-min sessions for 16 weeks, 4-days per week. A
program for older students is being developed but not yet available.
Specifically addressing Emily’s core phonological and naming-speed deficits,

school and clinical staff recommended Emily’s participation in the district’s Double
Support project, which included a naming speed intervention and phonological
intervention, the basic curriculum in her learning disability pull-out program. In
addition, a paraprofessional guided her through a computer-based intense automatic
high frequency word recognition program.
Recommendations Targeting Specific Layers of Naming Speed
Sublexical/Word Part Level Automaticity:
According to naming speed constructs, the automatic recognition of word parts

increases students’ reading rate. Therefore, both analytic and synthetic phonic
instruction (see previous chapter for discussion) are recommended to enhance
reading proficiency. The parallel phonological intervention, however, is the prima-
ry source for synthetic word recognition instruction. In either approach, the meta-
cognitive strategy of constructing and identifying word parts must be stressed. In
younger readers, sound-by-sound accuracy surpasses any emphasis on rate, so it is
appropriate to encourage single phoneme decoding as a word recognition strategy.
However, since an overdependence on sound-by-sound word attack is typical of
older naming speed readers, practitioners should proactively coach students who
are accurate but slow to use decoding-by-analogy, a metacognitive strategy for
recognizing words by comparing them to known words. For, example, when
pronouncing the word O/bama by syllables, a student might say, ‘‘If g-o is go,
then o must be /ō/; if m-a-m-a is mama, then b-a-m-a must be bama.’’
Commonly, synthetic phonics instruction stressing sublexical units includes
explicit instruction with visual mnemonic cues for common vowel/syllable pat-
terns, building and blending words sound-by-sound then part-by-part with letter
tiles, and making word activities stressing changing orthographic patterns.
Analytic phonics, by definition, emphasizes automatic identification of common
phonograms or word families (examples: -and, -ack, -ump, -ight) within words
being read through explicit instruction, wall charts (or personal folders), or phono-
gram towers, manipulations of common multiletter graphemes, and word sorts.
Sublexical/Word Part Level Automaticity:
Recent research by Blachman (see References) suggests that word pattern review
cards may also increase the automatic recognition of sublexical units. These are
simply note cards with previously taught patterns on one side, such as the vowel
diphthong _ai_; the underlines indicate that the pattern is in the middle of a word,
and a clue word or picture on the reverse side, for example, _ai_, rain and a picture
of raindrops. The verbal cue is ‘‘What do a and i say together in the middle of a
word or syllable?’’ Until the pattern is secure, the clued ‘‘teaching side’’ is flashed;
184 M.D. Shiffler
once the student recognizes the pattern, the pattern-only side is used for review and
automaticity. Review cards could be used in recommendations for parents, class-
room, or supplementary intervention. Sublexical automaticity through analytic
phonics and phonograms was a foundational component of Emily’s RAVE-O
naming speed intervention, while synthetic phonics was the instructional core of
her parallel phonological intervention.
Word and Sentence Level Fluency:
Students with naming speed deficits appear to have more difficulty learning the
irregular orthography of many high frequency words. High frequency word lists
like those by Sitton, Frye, or Dolch rank such words in order of their occurrence in
print. A multistep learning technique to improve lexical retention and retrieval for
each word might include visual presentation, briefly discussing any phonetically
regular or distinctive orthographic or semantic features, spelling by chant, writing
while verbalizing the writing strokes, visualizing, and recording on an index card in
a memorable personal sentence. A high frequency review box with categories for
words at automatic (within 1 s) recognition, approaching automatic, and introduc-
tory levels may also be used in multiple settings. Emily received intense high
frequency word reinforcement through a computer or paper high-frequency word
program administered by a paraprofessional.
Word and Sentence Level Fluency/Semantic Development:
Easily the most recommended form of sentence level fluency intervention, repeated
reading may be done in a variety of formats depending, somewhat, on the age and
reading level of the student. One of the most intense interventions, Repeated Oral
Assisted Reading (ROAR) developed by Jane Flynn Anderson (unpublished),
consists of the following steps as the student and assisting reader sit side by side:
a. The assisting reader reads a sentence or two while running his finger across the
top of the print as the student runs her finger under the print (the finger tracking
continues through all steps)
b. Both readers read the same sentence or two together with the assisting reader
establishing the rate and prosody (expression, intonation, phrasing)
c. The student reads the same sentence(s) on his own
d. At the end of a paragraph and page, the student reads those sections independently
Text at the high end of the student’s instructional range (between 3 and 10
miscues per 100 words) should be used; four 15-min sessions per week are ideal,
less time has minimal impact and more time gets very tedious. Often this method
works well for class texts. To ensure Emily had fluency practice at word and
sentence level, a high school student came to do ROAR with Emily three times a
week for 20 min. ROAR also expands the student’s exposure to high frequency
words, builds oral vocabulary for faster lexical retrieval, expands syntax, and serves
as strong modeled fluency reading, an important component in fluency instruction.
Word and Sentence Fluency/Semantic Development:
Listening to tapes while reading along has also been shown to increase the fluency
of struggling readers even through adulthood. This serves several purposes, includ-
ing accessing recreational content material at any level without energy being
diverted to word recognition; markedly expanding the semantic exposure at vocab-
ulary, syntactic, and schema levels; and actually increasing the silent and oral
reading fluency of the listener. In Emily’s case, the school had tape recordings
of all literature books used in the curriculum available for student checkout. Tapes
or CDs also make it possible for all students to be familiar with grade level trade
books being discussed in class. Many schools and public libraries have a collection
of tapes or CDs for class texts and recreational reading, respectively.
Word and Sentence Fluency/Semantic Development:
No matter what intervention is used for students with naming speed word recogni-
tion deficits, 10–30 min per day of independent level reading, in addition to school
texts and remediation programs, is essential for building fluency. The recom-
mended minutes and method may vary depending on the age of the student. The
high school student who did repeated readings with Emily also guided her selection
and oral reading of independent level self-chosen books.
Semantic Development:
Oral vocabulary is a critical link to both decoding and comprehension. Readers

recognize words eight times more quickly when they know the word’s meaning;
likewise, one of the key determinants in comprehension proficiency is readers’
receptive knowledge of print vocabulary, or degree of semantic lexical access. The
RAVE-O design incorporates semantic elaboration because of its importance in the
naming speed process, while most commercial or even teacher-designed fluency
interventions do not. For this reason, at least one recommendation should address
lexical access. Again, options vary by student situation but recommendations
should include development of ‘‘word consciousness’’ through collection of M &
M (multiple meaning) words, adults reading aloud texts about 4 years ahead of
grade level, vocabulary expansion programs, as well as a supporting framework of
interactive conversations and broad experiences. Sometimes expanding semantic
resources is most effectively accomplished in a group situation.
186 M.D. Shiffler
Double-Deficit Dyslexia A specific reading disability composed of phonological

and naming-speed deficits.
Dyslexia/Reading Disabilities A specific learning disability that is neurological in
origin. It is characterized by difficulties with accurate and/or fluent word
recognition and by poor spelling and decoding abilities. These difficulties typically
result from a deficit in the phonological component of language that is often
unexpected in relation to other cognitive abilities and the provision of effective
classroom instruction. Secondary consequences may include problems in reading
comprehension and reduced reading experience that can impede growth of
vocabulary and background knowledge. Adopted by the International Dyslexia
Association IDA Board of Directors, Nov. 12, 2002. This Definition is also used
by the National Institute of Child Health and Human Development (NICHD).
Fluency Wolf’s inclusive working definition (Wolf and Katzir-Cohen, 2001, see
themed issue of Scientific Study of Reading in resources) frames fluency as the
efficient acquisition of the naming speed processes stressed in RAVE-O and
decidedly essential to proficient reading:
In its beginnings, reading fluency is the product of the initial development of accuracy and
the subsequent development of automaticity in underlying sublexical processes, lexical
processes, and their integration in single-word reading and connected text. These include
perceptual, phonological, orthographic, and morphological processes at the letter, letter
pattern, and word levels, as well as semantic and syntactic processes at the word level
and connected-text level. After it is fully developed, reading fluency refers to a level of
accuracy and rate where decoding is relatively effortless; where oral reading is smooth
and accurate with correct prosody; and where attention can be allocated to compre-
hension. (p. 219)
Grapheme The minimal unit in a writing system making a difference (usually a

letter).
Naming-Speed Deficits Deficits in the processes underlying the rapid recognition
and retrieval of visually presented verbal stimuli.
Phoneme The smallest unit of sound that can make a difference in a word.
Phonemic awareness is awareness and manipulation of phonemes (individual
sounds) in print and speech. Phonemic segmentation is segmentation of spoken or
written word into phonemes.
Phonological Awareness The ability to identify and manipulate spoken sound
units.
Phonological Deficits Difficulty with linguistic operations such as blending, identi-
fication, segmenting, retrieval, and memory that are based on the sounds of speech.
Prosody Differences in pitch, loudness, expression, tempo, phrasing, and rhythm

in oral reading.
Sublexical Lexical units are word-level units of meaning; the lexicon of a
language is its vocabulary. Sublexical refers to units such as rimes and affixes
that are smaller than a full word.
References
Resources for Clinicians and Families
Both the Journal of Learning Disabilities (July/August 2000, Volume 33, Number 4) and Scientific
Studies of Reading (2001, Volume 5, Number 5) published theme issues addressing double-
deficit hypothesis, naming-speed, and related fluency issues.
Blachman, B. A., Schatschneider, C., Fletcher, J. M., Francis, D. J., Clonan, S. M., Shaywitz, S.,
et al. (2004). Effects of intensive reading remediation for second and third graders and a 1-year
follow-up. Journal of Educational Psychology, 96, 444–461.
Morris, R., Lovett, M., & Wolf, M. (In press). Two upcoming articles reporting results of large
population study on phonological and naming speed interventions. Journal of Educational
Psychology (in press).
Recording for the Blind & Dyslexic. Retrieved November 21, 2007, from http://www.rfbd.org/.
The Center for Reading and Language Research, Tufts University. The RAVE-O program: A
comprehensive, fluency-based reading intervention program. Retrieved November 21, 2007,
from http://www.ase.tufts.edu/crlr/raveo.html.
Winn, B. D., Skinner, C. H., Oliver, R., Hale, A. D., & Ziegler, M. (2006). The effects of listening
while reading and repeated reading on the reading fluency of adult learners. Journal of
Adolescent and Adult Literacy, 50(3), 196–205.
Wolf, M. (2007). Proust and the squid: The story and science of the reading brain. New York:
HarperCollins.
Wolf, M., & Denckla, M. (2005). Rapid Automatized Naming and Rapid Alternating Stimulus
Tests. Austin, TX: Pro-Ed.
Wolf, M., & Katzir-Cohen, T. (2001). Reading fluency and its intervention. Scientific Studies of
Reading, 5(3), 211–238.
Wolf, M., Bowers, P. G., & Biddle, K. (2000). Naming-speed processes, timing, and reading: A
conceptual review. Journal of Learning Disabilities, 33(4), 387–407.
Naming Speed/Fluency and Phonological Interventions
Although RAVE-O is the only comprehensive intervention targeting all levels of

the naming speed process currently available, this chapter’s resource list also
describes published fluency and phonological interventions that address naming-
speed, double deficit, and phonological word reading disorders. Fluency programs
listed generally address automaticity and accuracy at word and sentence level but
not at word part or semantic levels, which should be considered for students with
188 M.D. Shiffler
naming speed deficits. Because of cost and training required, some programs are
limited to school district, university literacy center, and professional tutoring
services (Fluency: RAVE-O, Read-It; Phonological Decoding: Wilson, Spell Read/
P.A.T., Language!). Others are more appropriate for less intense individual or small
group intervention situations (Fluency: Read Naturally, Great Leaps, QuickReads;
Phonological Decoding: REWARDS). Most programs contain some overlap be-
tween phonological and fluency remediation elements.
Benchmark Word Identification/Vocabulary and Word Detective Programs:
Elementary intervention stressing building words from orthographic patterns for

students with basic phonemic knowledge (http://www.benchmarkschool.org).
Decoding by analogy, an analytic metacognitive strategy, taught with numerous
common spelling patterns forms the core of the Benchmark Word Detective
program by Irene Gaskin developed for students with severe word recognition
disorders. Although time consuming, Benchmark offers a very thorough analytical
approach to sublexical automaticity.
Systematic Sequential Phonics They Use (Cunningham):
Presents making word activities introducing word patterns that become progres-
sively more difficult at a logical, consistent pace for striving readers. Also appro-
priate for a private tutor or in most home situations.
Edmark Reading Program, http://www.riverdeep.net/pls/portal/url/page/RVDP_PO. Computer-
based, intense automatic high frequency word recognition program.
Great Leaps Reading, http://www.greatleaps.com. Kindergarten through high school fluency
intervention.
Language! A Literacy Intervention Curriculum, http://www.language-usa.net. Comprehensive
program for struggling readers grades 4 and above
QuickReads, http://www.pearsonatschool.com. Fluency program with CD for grades 2–5.
RAVE-O, http://www.ase.tufts.edu/crlr/rave-o.html. Multilayered fluency intervention program
for early elementary grades addressing all levels of naming-speed model.
Reading Mastery (Science Research Associates), https://www.sraonline.com. Basic curriculum in
a learning disability pull-out program.
ReadIt, http://www.reading-assistant.com. Electronic fluency program developed by Marilyn
Adams for grades 2–5.
Read Naturally, http://www.readnaturally.com. Self-monitored CD fluency program for grades
1–7.
REWARDS, http://www.sopriswest.com. Word attack and rate development program for elemen-
tary grades and above.
Spell Read P.A.T. (Phonemic Analysis Training, www.spellread.com Phonological/decoding/
spelling intervention for ages 5 years to adult.
Text Talk http://teacher.scholastic.com/products/texttalk/. Isabelle Beck’s outstanding vocabulary
building program embeds both lexical and syntactic development in age-appropriate literature
conversations. Students with low to below average semantic knowledge scores in one uni-
versity’s urban literacy center responded enthusiastically to Text Talk, and it was incorporated
into both the after-school program many of the students attended as well as the kindergarten
classrooms in low income schools that other students attended.
Wilson Reading System, http://www.wilsonlanguage.com. Elementary to adult phonological/
decoding/spelling intervention based on Orton Gillingham.
Hall, S., & Moats, L. (1998). Straight talk about reading. New York: NTC Press.
National Institute of Child Health and Human Development, http://www.nichd.nih.gov. Includes
summaries of neurological studies.
National Joint Committee on Learning Disabilities, Finding Common Ground, http://www.ld.org/
advocacy/Ldroundtable.cfm
Words Their Way (4th Ed.) and the related series of reading stage-appropriate sort books by Bear,
Invernizzi, Johnston, and Templeton builds general analytic phonic skills and would be
valuable as a home or supplementary program component.
See also Resources for Families in previous chapter.
Chapter 20
A Tale of Two Assessments: Reading Fluency
Kara Lindstedt and Michael J. Zaccariello
It seemed Ethan had it all: he was popular among his peers, renowned for his
athletic prowess, and the son of educated and well-established parents residing in
the upper echelon of a Midwestern community. Further, he was an 11th grader at an
esteemed private school known for its academic rigor and for producing future
doctors, lawyers, and philosophers. Yet, there was much more to Ethan than met the
eye. Academically, he struggled to keep up with class assignments and to meet the
expectations of his high-achieving parents. He had to jump many hurdles to meet
the lofty goals that were the norm in his everyday world, and this weighed heavily
on him.
Ethan had difficulty with reading since grade school. He found reading extremely
challenging and laborious, and he was unable to keep up with the volume of reading
that was expected in his classes. Not only did the demands of in-class tasks produce
obstacles for him, but homework was particularly frustrating—at times he would
give up. Ethan had begun to develop what psychologists call ‘‘learned helpless-
ness.’’ He would not attempt assignments, feeling as if no matter how well or hard
he worked, he would inevitably fail. In contrast, he tended to function with ease in
courses that had less reading. Beyond Ethan’s difficulties with reading, he found it
difficult to sustain his focus and concentration. He also felt that it took him longer
than his friends to plan or organize various school assignments. Finally, he felt that
he had problems recalling things he read. As an upperclassman with hopes of
attending a university, Ethan, like his peers, took the college entrance exams.
Though he achieved a score of at least 30 on the math section of the ACT, he
attained only a 19 in reading. In spite of his reading struggles, Ethan had managed
to achieve average to above average grades in all classes.
Ethan’s family was aware of his stress and frustration at school. Fireworks ignited
whenever his parents initiated conversations about his schoolwork. He had become
increasingly reclusive and evaded conversations with family members. Was Ethan a
typical adolescent, ‘‘too cool’’ for time with family, or a troubled teenager tired of
having to fight to achieve the things that came easily to his friends? Or, was he a
teenager not just stressed by high academic, athletic, and social demands, but also a
frustrated young man trying to distance himself from fiery verbal altercations in the
home that intensified preexisting stressors and demands in other areas of his life?

192 K. Lindstedt, M.J. Zaccariello
Ethan would tell you that his story was that of an adolescent in conflict with his
parents, especially his father. It was the story of a teen feeling badgered by parents
who did not listen to him, did not ‘‘get’’ him, and did not trust him. Ethan’s story
was that of a young man who, at times, wished he would simply disappear and not
have to deal with his problems anymore. He was struggling with symptoms of
depression and anxiety exacerbated by family stressors and the effects of a reading
disability. Ethan attempted to cope by relying on friends, mentors, physical activity,
and/or his religious beliefs; however, at times it got to be simply too much.
Ethan underwent two separate neuropsychological evaluations, the first as he
entered fourth grade and the second as he completed 11th grade. Consequently,
these data outline the nature and progression of Ethan’s reading difficulties as he
advanced in age and grade. His first evaluation, at age 9 years and 6 months was to
outline and ascertain the extent of his reading comprehension problems. The second
neuropsychological assessment, conducted when Ethan was 17-years old, was to
update his cognitive profile and to determine whether additional accommodations
or recommendations were necessary for him to negotiate his rigorous high school
curriculum.
Initial Test Results
Ethan’s initial neuropsychological evaluation comprised intellectual ability, pho-

nological awareness, overall academic skills development, and an informal reading
inventory (Tables 20.1–20.3). His effort and cooperation during testing were
adequate to ensure that the results attained were valid and reliable. Ethan showed
mild anxiety at times, in the form of modest concern when he was not able to
answer a question. He was sociable, fun to work with, and asked intriguing ques-
tions about a variety of topics. In general, Ethan was not distractible, impulsive, or
restless, but he needed reminders to keep his attention focused at times.
Ethan demonstrated superior overall intellectual ability as assessed by the
Wechsler Intelligence Scale for Children—Third Edition (WISC-III) with superior
verbal comprehension ability and high average nonverbal intellectual ability. The
vast majority of Ethan’s cognitive and academic profile was solidly average to well
above average. However, there existed one glaring and significant weakness that
was the most likely culprit for his reading difficulties. That weakness was in the
realm of phonological processing.
Initial Formulation and Recommendations
Phonological processing is the method by which sound structure in language

(reading, writing, listening, and speaking) is processed (Wagner and Torgesen,
1987). According to Wagner et al. (1999), phonological processing is composed
20 A Tale of Two Assessments: Reading Fluency 193
Table 20.1 Intelligence – first evaluation

Verbal Comprehension 124 95th
Information (16)
Similarities (12)
Vocabulary (15)
Comprehension (14)
Freedom from Distractibility 121 92nd
Arithmetic (16)
Digit Span (11)
Perceptual Organization 116 86th
Block Design (15)
Object Assembly (10)
Processing Speed 111 77th
Coding (8)
Symbol Search (16)
Verbal IQ 127 96th
a
Table 20.2 Academic achievement – first evaluation

Woodcock Johnson Psychoeducational Battery – Revised
Dictation 107 69th
Punctuation/capitalization 112 78th
Spelling 104 61st
Usage 121 92nd
Broad mathematics 139 99th
Basic reading skills 103 57th
Word attack 103 57th
Basic writing skills 111 77th
Proofing 113 81st

Grade Type Words per minute Accuracy (%) Comprehension (%)
5 Expository 68 96 87
6 Expository 43 96 75
7/8 Expository 58 94 50
Table 20.3 Other cognitive functions – first evaluation

Comprehensive Test of Phonological Processing Score Percentile
Elision (13)
Blending words (9)
Rapid naming 76 5th
Rapid digit naming (6)
Rapid letter naming (6)
Phonological memory 88 21st
Alternate rapid naming 61 7th
Rapid color naming (3)
Rapid object naming (4)
of three distinct yet interrelated concepts. First, phonological awareness is an

individual’s awareness of and access to sound structure in language. Second,
phonological memory is the ability to temporarily hold phonological information
in mind while manipulating it. Third, rapid naming assesses the ability to quickly
and efficiently retrieve phonological information. During feedback with families,
we refer to phonological awareness as the basic tools of reading. Phonological
memory is the ability to briefly hold and manipulate the tools, and rapid naming is
how quickly one can accurately use the tools.
Ethan’s rapid naming skill was markedly poorer when compared with his other
basic phonological processing skills and general neuropsychological profile. Al-
though Ethan’s phonological toolkit was stocked and he could use and manipulate
phonological information, he was extremely effortful and inefficient in using the
tool box, which rather exquisitely explained his reading difficulties. Dysfluent
reading, even if accurate, can significantly affect reading comprehension. Signifi-
cant time and resources must be expended on decoding individual words, thereby
impeding the integration of the material necessary to understand the overall mean-
ing of the passage. The mental energy expended on reading quickly impedes the
integration of aspects of the reading passage, often resulting in frustration. Basical-
ly, Ethan was a slow reader.
On the basis of the evaluation, recommendations included enhancing Ethan’s
reading speed or automaticity with a combination of repeated reading and instruc-
tion methods called Retrieval, Automaticity, Vocabulary Elaboration, Orthog-
raphy (RAVE-O) (http://ase.tufts.edu/crlr/raveo.html). In repeated reading, Ethan
is asked to read books, chapters, or stories repeatedly (3–5 times) within a several-
day period. He should not be asked to do this with all reading materials. This
method should help expand Ethan’s automatic sight-vocabulary. A variation of
repeated reading is to have a parent or peer read orally along with Ethan.
The assisting reader can read all the words at the same pace as Ethan reads, or
the assisting reader can provide only those words that Ethan cannot decode imme-
diately himself.
All children with reading problems need to read regularly at home, for instance
15 min per day for elementary schoolchildren and up to 30 min per day for older
children. Ethan’s parents should try to make this fun or practical by using incen-
tives, allowing school-assigned reading to count in the daily reading period,
encouraging a mixture of silent and oral reading, alternating reading paragraphs/
sentences with him, and giving a day off from time to time. Above all, home
reading should involve high-interest material at Ethan’s current reading level that
he helps choose, with a wide range of reading including short books, favorite
magazines, newspaper articles, videogame instruction manuals, or chapter books.
Ethan’s second evaluation, approximately 8 years later, was to document any
changes in his reading fluency. His parents wanted an update of his neuropsycho-
logical profile to determine whether intervention or accommodation was necessary.
Ethan was resistant to public accommodation or intervention at school and had not
received any significant intervention since his initial assessment. The prior test
battery was essentially duplicated to provide a comparison of Ethan’s performance
relative to his peer group (i.e., norm-referenced comparison) and to evaluate any
changes relative to his initial profile (i.e., more of an ipsative comparison).
Second Test Results
Ethan’s effort and cooperation throughout testing were once again adequate to
ensure that the results attained were a valid and reliable interpretation of his
everyday functioning. He demonstrated social behavior suitable for the testing
context. He made appropriate eye contact and both initiated and engaged in
spontaneous conversation about a myriad of topics. Ethan’s mood appeared reason-
ably positive. He displayed no overt evidence of significant inattention, distracti-
bility, or impulsivity. Overall, Ethan was polite and his demeanor was pleasant,
even on tasks where he had difficulty.
Ethan’s neuropsychological profile was for the most part consistent with that
seen when he was in fourth grade. A direct comparison across time was not possible
because of revisions of some tests and the administration of others that were
appropriate for his age (Tables 20.4–20.6).
Second Formulation and Recommendations
Ethan’s primary deficit continued to be in rapid naming and reading fluency for
which he would qualify for a specific learning disability in Reading Fluency. Scores
that were initially mildly to moderately impaired fell to the severely impaired range
during testing. The discrepancy in rapid naming scores was not necessarily indica-
tive of a regression in skills. Rather, Ethan was making slow progress in reading
fluently. It was as if he were driving in a NASCAR race in first gear while everyone
Table 20.4 Intelligence – second evaluation

Wechsler Adult Intelligence Scale – Third Edition Score Percentile
Information (14)
Similarities (9)
Vocabulary (13)
Working Memory 104 61st
Arithmetic (14)
Digit Span (8)
Perceptual Organization 138 99th
Block Design (15)
Coding (9)
Symbol Search (10)
Verbal IQ 110 75th
Table 20.5 Academic achievement – second evaluation

Woodcock Johnson Tests of Achievement – Third Edition
Word attack 113 81st
Nelson-Denny Reading Test
Reading rate 71–72 3rd
Accuracy 62–67 1st
Gray Oral Reading Test – Fourth Edition
Rate (6)
Accuracy (5)
Fluency (2)
Comprehension (9)
Oral reading quotient 73 4th
else was cruising along in fifth gear. Ethan’s poor reading rate was magnified when
reading higher ordered, connected text or passages typically encountered in both
high school and college. He was extremely dysfluent in his reading, which had a
mild to moderate adverse impact on his reading comprehension abilities.
Table 20.6 Other cognitive functions – second evaluation

Comprehensive Test of Phonological Processing Score Percentile
Elision (10)
Blending words (12)
Rapid naming 52 <1st
Rapid digit naming (2)
Rapid letter naming (2)
Phonological memory 97 42nd
Individuals most benefit from remediation of reading disorders in elementary

school. Some respected researchers have even opined that kindergarteners who are
at risk for reading disorders can benefit from intervention (Fletcher, 2007). We
continued to propose those recommendations outlined during his first evaluation.
However, the focus shifted to more accommodation rather than remediation of
Ethan’s reading fluency issues. The following suggestions were added.
Ethan’s profound reading fluency impairments suggest that it will take him an
extraordinary amount of time to complete tests, assignments, or homework that
relies heavily on reading. Consequently, he should not be expected to perform at top
efficiency level on timed tasks. This does not mean that he should be released from
this type of task, but extra time can be given strategically when needed, or
homework assignments may be shortened. In addition, curriculum requirements
such as timed reading tests might be loosened or modified for him. Shortened
assignments at school or a reduced course load would be relevant and beneficial
in many subject areas, particularly when extensive reading is involved.
Ethan’s parents should apply to a program for visually impaired and dyslexic
citizens that can provide access to a library of tapes that includes many of the books
he will use in school. This will allow Ethan to listen to textbooks while reading and
following along, which will enhance his reading comprehension in all subjects.
Given his level of reported psychological distress, a recommendation was also
offered for individual psychotherapy, coupled with a strong family dynamic com-
ponent, to address his behavioral and emotional issues as well as what appear to be
mild to moderate family interaction issues. Counseling could provide Ethan an
environment to explore his feelings and learn effective coping strategies to deal
with his distress and anxiety. Given his level of distress, psychopharmacologic
intervention may also be warranted and should be discussed with his psychothera-
pist. In addition, psychotherapy could allow Ethan’s family a structured venue to
explore, discuss, and address ongoing family stressors.
Discussion
An important aspect of this assessment was ‘‘text level reading’’ or ‘‘connected text
reading’’ The passages included in such instruments are longer and more complex
than those completed on most tests of academic achievement. They resemble those
typically encountered by students at various levels of schooling from preschool to

postsecondary education. In essence, they are arguably an ecologically valid way of
assessing how a deficient building block of reading can impact higher-ordered
processes. Text level tests are broadly broken down into two categories: informal
(e.g., Qualitative Reading Inventory-3; QRI) and formal (e.g., Gray Oral Reading
Test-4th Edition; GORT-4, or Nelson-Denny Reading Test). The major distinction
is that informal reading inventories often lack normative data, such as standard
scores and percentiles, which their formal counterparts have.
For the second evaluation, only formal reading inventories were used because
such tests are commonly accepted by the entities that regulate college entrance
exams. The GORT-4 was chosen because it allowed multiple, formal, psychometric
levels of evaluation to include comprehension and, what was most important in
Ethan’s case, reading rate and fluency. A caveat of using a formal reading inventory
such as the GORT-4 is that it relies on having the individual read the passage aloud,
quite an uncommon practice for students after the fifth grade. The Nelson-Denny
Reading Test was used because it is generally thought to have longer passages
and more difficult comprehension questions than the GORT-4. The individual is
also allowed to read the passages silently, so it is particularly suited to adolescents
or young adults in high school or university settings. The Nelson-Denny is not
amenable to some of the fine-grained test scores that the GORT-4 provides. The
integration of data from both measures was used to provide a double check of
Ethan’s reading fluency impairment, as observed on the test of phonological
processing, and to ascertain as validly as possible the extent of his reading problems.
Rapid naming A component of phonological processing. Refers to how efficiently

individuals can retrieve phonological information.
Retrieval, Automaticity, Vocabulary Elaboration, and Orthography (RAVE-O) A
fluency-based reading intervention program designed to increase reading rate and
efficiency with three basic goals: (1) development and enhancement, or fluency, in
word identification, work attack, and reading comprehension; (2) reinforcing sub-
lexical (e.g., scanning, pattern recognition, faster initial, and final phoneme recog-
nition) and lexical (e.g., associations) knowledge; (3) practice and accumulation of
metacognitive strategies aimed at decoding and retrieving words (Wolf et al. 2000).
Phonological Awareness An individual’s awareness of oral language.
Phonological Memory Coding information phonologically for temporary storage
in working memory.
Phonological Processing The method by which sound structure in language
(reading, writing, listening, and speaking) is processed.
References
Bowers, P. G., & Ishaik, G. (2003). RAN’s contribution to understanding reading disabilities. In H.
L. Swanson, K. R. Harris, & S. Graham (Eds.), Handbook of learning disabilities (pp. 345–
363). New York: Guilford.
Chard, D. J., Vaughn, S., & Tyler, B. J. (2002). Synthesis of research on effective interventions for
building reading fluency with elementary students with learning disabilities. Journal of
Learning Disabilities, 35, 5, 386–406.
The Center for Reading and Language Research (n.d.). The RAVE-O program. A competency,
fluency-based reading intervention program. Retrieved June 11, 2007 at http://ase.tufts.edu/
crlr/raveo.html
Fletcher, J. M. (2007, February). Identifying and treating learning disabilities: The importance of
response to intervention. Seminar presented at the meeting of the International Neuropsycho-
logical Society, Portland, OR.
Identification to Intervention. (pp. 164–183). New York: The Guilford Press.
Joseph, L. M. (2005). Understanding and implementing neuropsychologically based literacy
interventions. In R. C. D’Amato, E. Fletcher-Janzen, & C. R. Reynolds (Eds.), Handbook of
school neuropsychology (pp. 738–757). Hoboken, NJ: Wiley.
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in the acquisition of reading skills. Psychological Bulletin, 101, 192–212.
Wagner, R. K., Torgesen, J. K., & Rashotte, C. A. (1999). Comprehensive Test of Phonological
Processing. Austin, TX: Pro-Ed.
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nal of Learning Disabilities, 33, 4, 375–386.
Council for Learning Disabilities (n.d.). CLD infosheets: Secondary students with learning
disabilities in reading: Developing reading fluency, http://www.cldinternational.org/
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Chapter 21
Lost in Space: Nonverbal Learning Disability
Richard J. Clark
Though Catherine had always been somewhat intense and anxious in her style and
approach to people and events, her recent experiences of extreme anxiety, moodi-
ness, and outbursts of frustration seemed out of character and much more than
‘‘adolescent angst.’’ She was unable to sleep and experienced tachycardia at night,
which fueled acute panic attacks and a chronic cycle of fears about her health.
She was exceedingly irritable and difficult to reason with or to help calm down. She
constantly complained about her ‘‘friends’’ not being friends at all; they thought
she was mean or nosey when she was only trying to be helpful and did not share her
interests or listen to her ideas. She became particularly focused on certain kids who
irritated her and would obsess about their behavior even when it did not affect her
directly. Though she had learning difficulties, she had always been a conscientious
student, utilizing the support available from school and getting along okay, but now
everything seemed too difficult and she was tired of doing the same thing over and
over, especially in math.
At the time Catherine was referred, she was just beginning her eighth grade year.
Her periods of acute anxiety had subsided, and the summer break had been some-
what helpful in reducing her overall stress level, but she remained chronically
irritable, edgy, and frustrated with almost any demands, whether they be academic,
interpersonal, or routine expectations. Her attitude toward school was especially
negative, feeling that she was not learning anything, kids were all mean, and so on.
Within individual therapy sessions, efforts to develop relaxation and self-monitoring
skills yielded limited results, because her rigidity in interpreting social cues and
situations made it very difficult for her to step back and reflect on her options. Work
in a therapy group focusing on social interaction and problem solving was somewhat
helpful, but her core frustration and tension remained at a high level. After reviewing
the progress and challenges in her case, a full psychological evaluation was recom-
mended to help better understand her cognitive and emotional development and
hopefully generate new directions for her treatment.
A review of Catherine’s developmental history yielded few significant issues in
her early years. The final 3 months of the pregnancy were particularly stressful for
her mother, as Catherine’s oldest brother died of complications from a brain tumor
5 weeks prior to her birth. Early developmental milestones were within typical

202 R.J. Clark
ranges, though she was slightly delayed in walking and was described as somewhat
clumsy or uncoordinated and being rather passive in exploring her environment as a
toddler. She had numerous ear infections in her toddler and preschool years and a
bout of chicken pox at age 5, which involved prolonged high fever. Catherine was
initially diagnosed with Attention Deficit Hyperactivity Disorder (ADHD) in sec-
ond grade. Dextroamphetamine sulfate, and then dextroamphetamine extended-
release, had been somewhat helpful in improving focus and work completion at
school. Near the beginning of seventh grade, however, she was switched to sertra-
line HCl because of diminished effectiveness of the dextroamphetamine sulfate and
increased stress around her adjustment to middle school. The sertraline HCl was
discontinued while her tachycardia was being investigated but was restarted after
no medical reason could be established. At about this time, she was referred for
therapy to address her anxiety and irritability issues.
Catherine’s academic difficulties had begun to emerge in prekindergarten.
Although she spoke well and recognized letters and words fairly quickly, she
seemed lost when it came to number recognition, one-to-one correspondence, and
math reasoning. Though friendly and kind to others, and despite her noted creativi-
ty, she frequently played alone and seemed to have trouble integrating her ideas
with others. An initial screening suggested some pragmatic language delays and
early math deficits, but no services were provided. Near the end of her kindergarten
year, however, her difficulties with language processing, receptive understanding,
and inference led to initiation of Speech and Language services at school. By the
middle of her first grade year, learning disability services were added to support her
ongoing struggles with math. Her early writing was impacted by poor fine motor
skills (second percentile on a Beery-Buktenica Developmental Test of Visual-
Motor Integration in first grade) but legibility improved as she practiced, though
she would sometimes take a long time to get things ‘‘just right.’’ In reading she
could decode words okay but initially had difficulty tracking and pointing to a word
within a sentence and was unaware of the reason for spaces between words. At the
time of initial referral, she received services through the Learning Disability
program at her middle school, with direct math instruction as well as support for
other classes.
The Wechsler Intelligence Scale for Children – Third Edition had been adminis-
tered in February 1997 and again in November 1997 as part of the process for
determination of special educational need. The initial assessment found borderline
deficient ability overall (Verbal 75, Performance 78, Full Scale 75). Although she
was consistently in the borderline range on the Performance subtests, she showed a
great deal of variability within the Verbal scale, ranging from average on Informa-
tion and Similarities to very deficient on Arithmetic and deficient on Comprehen-
sion (scale scores 1 and 4, respectively). The 11/97 assessment (at age 6 years and
11 months) yielded higher estimates in all areas, with a Verbal Score of 94,
Performance Score of 86 and Full Scale score of 90.
Catherine’s history of math difficulties, pattern of abilities in early cognitive
assessments, and functional social/emotional weaknesses raised the question of
whether she had a Nonverbal Learning Disability (NLD). NLD is a construct
21 Lost in Space: Nonverbal Learning Disability 203
that has been summarized by Rourke (1989) as a pattern of neuropsychological

strengths and weaknesses, which have impact on both academic and socioemotional
development. More specifically, individuals with NLD usually show relative
strengths in language processing, rote verbal memory, reading recognition, and
spelling skills. Conversely, they typically show relative weaknesses in visual-motor
coordination, nonverbal problem solving, abstract reasoning, tactile perception,
arithmetic calculation and reasoning, and social interaction skills.
One of the general initial indices for NLD has historically been a significant split
between Verbal and Performance (nonverbal) scale scores, in favor of the former,
on the Wechsler Intelligence Scales for Children, Revised and Third Edition. The
new revision of the Wechsler scales, however, represented a fairly significant
change, expanding to four scales instead of two, as well as adding and dropping
some subtests. The changes in what had previously been called the Performance
scale, now the Perceptual Reasoning scale, were most marked, with only one
subtest remaining from the previous edition. The new Working Memory and
Processing Speed scales included some of the key subtests from the previous
measure, along with new ones. A new, expanded assessment (Wechsler Intelligence
Scales for Children, Fourth Edition, Integrated) was also now available, which
provided additional measures within each domain as well as some alternative
administration options and break down of measures into different components.
While attempting to understand Catherine’s capacities and needs, this assessment
would also provide a look at how an apparent NLD profile ‘‘from history’’ would
appear on this new measure.
Test Results
Catherine was pleasant and cooperative throughout the three evaluation sessions.
While clearly anxious at various points and with particular activities (especially
math related), her familiarity with the examiner seemed to help her to continue to
make a good effort. She showed relatively good verbal communication skills but
sometimes got stuck on certain ideas and did not readily adjust to the feedback she
was receiving. She frequently had difficulty expanding on her initial answer to
clarify or show more depth of understanding. Although she commented on many
activities that she perceived as difficult (‘‘these are getting hard!’’), she tended to be
overly positive in appraisal of her actual performance, with little critical thinking or
reflection of awareness or frustration in less successful completion of the tasks,
especially those involving visual detail, construction, or mental manipulation. She
was generally more fluid in responding to verbal items while being less efficient and
organized in attempting tasks that involved more visual complexity, perceptual
speed, and processing skills. On the basis of her effort and attitude throughout, these
appeared to be valid measures of her current levels of cognitive and academic
functioning (Tables 21.1–21.3).
204 R.J. Clark

Wechsler Intelligence Scale for Children – Fourth Edition, Integrated Scorea Percentile
Perceptual Reasoning Index 61 0.5th
Working Memory Index 59 0.3rd
Full Scale IQ 70 2nd
Verbal comprehension
(Information) (6) 9th
(Word Reasoning) (8) 25th
Perceptual Reasoning
Block Design (2) 0.8th
Picture Concepts (3) 1st
(Picture Completion) (4) 2nd
Perceptual Domain Supplemental
Block design no time bonus (1) 0.3rd
Block design multiple choice (4) 2nd
Block design multiple choice no time bonus (6) 9th
Block design process approach (1) 0.3rd
Elithorn Mazes (6) 9th
Elithorn Mazes no time bonus (6) 9th
Working memory
Digit span (5) 5th
Letter-number sequencing (1) 0.3rd
(Arithmetic) (3) 1st
Working memory domain supplemental – registration
Digit span forward (8) 25th
Visual digit span (11) 63rd
Spatial span forward (5) 5th
Letter span nonrhyming (9) 37th
Letter span rhyming (12) 75th
Working memory domain supplemental – manipulation
Digit span backward (3) 1st
Spatial span backward (2) 0.8th
Letter-number sequencing process approach (3) 1st
Arithmetic with time bonus (6) 9th
Arithmetic process approach part A (4) 2nd
Arithmetic process approach part A time bonus (5) 5th
Arithmetic PA Part B (3) 1st
Written arithmetic (2) 0.8th
Processing Speed
Coding (7) 16th
(Cancellation) (8) 25th
(continued)

Wechsler Intelligence Scale for Children – Fourth Edition, Integrated Scorea Percentile
Processing Speed Domain Supplemental
Cancellation Random (7) 17th
Cancellation Structured (11) 63rd
Coding Copy (5) 5th
Similarities (10)
Vocabulary (10)
Comprehension (9)
Information (6)
Word Reasoning (8)
Block Design (2)
Digit Span (5)
Arithmetic (3)
Coding (7)
Symbol Search (5)
Cancellation (8)
a

Tests Raw Score Score Percentile
Beery-Buktenica Developmental Test of 65 1st
Visual-Motor Integration
California Verbal Learning Test – Children’s
Version
List A total trials 1–5 [49] 47th
List A trial 1 [50] 50th
List A trial 5 [50] 50th
List B trial 1 [45] 32nd
List A short delay [45] 32nd
List A short-delay cued recall [40] 16th
List A long delay [50] 50th
List A long-delay cued recall [45] 32nd
Percent recall – primary [55] 68th
Percent recall – middle [45] 32nd
Percent recall – recency [55] 68th
Percent recall consistency [50] 50th
List A recognition [50] 50th
The Tower of London 77
Conceptual level responses 58
Categories correct <1st
Failures to maintain set >16th
(continued)
206 R.J. Clark

Tests Raw Score Score Percentile
Intermediate Booklet Category Test 33 <1st
Dominant hand (left)
Grip strength (kilograms) 8 37
Finger Tapping Test (per 10 S) 29 53
Trial 1 seconds 125 0
Trial 1 drops 2
Trial 2 drops 0
Nondominant hand
Grip strength kilograms 16 69
Finger Tapping Test (per 10 S) 28 61
Trial 1 drops 0
Trial 2 drops 0
Dominant hand (left) (errors per 20 trials)
Finger localization 4
Fingertip X/O perception 0
Fingertip number perception 14
Nondominant hand
Finger localization errors/20 14
Fingertip X/O perception 0
Fingertip number perception 13
Parent form
Withdrawn/depressed 76 99th
Anxious/depressed 70 98th
Somatic complaints 68 96th
Social problems 69 97th
Thought problems 72 99th
Attention problems 83 >98th
Rule breaking behavior 51 54th
Aggressive behavior 70 98th
Teacher’s report form
Anxious/depressed 65 93rd
Withdrawn/depressed 56 73rd
Somatic complaints 50 <50th
Social problems 57 76th
Thought problems 65 93rd
Attention problems 54 65th
Rule breaking behavior 50 <50th
Aggressive behavior 50 <50th

Wechsler Individual Achievement Test – Second Edition Score Percentile Grade equivalent
Reading composite 99 47th
Word reading 104 61st 9.8
Reading comprehension 100 50th 9.1
Pseudoword decoding 102 55th
Math composite 45 0.02nd
Numerical operations 55 0.3rd 3
Math reasoning 51 0.08th 2.8
Written language composite 97 42nd
Written expression 98 45th 8.5
Catherine’s overall cognitive ability was at the cusp of the borderline deficient to
deficient range, though it is her pattern of functioning across the various scales and
supplemental measures that helps to tell the story of her cognitive capacities. She
was generally consistent in scoring in the average range on the subtests of the
Verbal Comprehension scale, resulting in a standard score of 98. She demonstrated
average vocabulary knowledge, language development, crystallized abilities, and
verbal reasoning. Catherine was generally able to relate her ideas and knowledge
effectively and understand verbal input in order to access this knowledge. She
provided acceptable responses on many tasks requiring reasoning and integration of
knowledge, though she sometimes had trouble providing additional detail or clar-
ification of meaning.
Catherine’s performance on the Perceptual Reasoning and Working Memory
scales was in marked contrast to these global verbal strengths, with scores in the
deficient and very deficient ranges, respectively. Within the global fluid reasoning
and simultaneous processing difficulties measured by the Perceptual Reasoning
cluster, she showed marked weaknesses in visual perception and organization,
abstract categorical thinking and reasoning, concept formation, and separation of
visual figure/ground. Her best performance in this area (though still at the cusp of
borderline deficient) was on the Matrix Reasoning subtest, on which she showed
slightly better ability to recognize a pattern and choose from options to complete it.
In attempting the Block Design items, Catherine showed extreme weakness in
orienting the blocks individually or in relation to each other. The supplemental
Block Design Multiple Choice (BDMC) and Process Approach (BDPA) measures
further underscored her visual perception and organization difficulties. In the
former, the Block Design task was presented as a multiple choice task (the child
is shown a design and four possible block arrangements, with the blocks within
each separated by about half an inch, then asked to choose the one that ‘‘when put
together in your mind’’ matches the design). The multiple choice format eliminates
the motor manipulation of the blocks to form the design and is more dependent on
being able to visualize the block patterns, as well as requiring vigilance and impulse
control. Under this format, she was unable to get any of the items correct. Within
the Process Approach, she failed to correctly reproduce any of the six new designs
208 R.J. Clark
and then did not benefit at all from a second opportunity, which included the use of
an overlay to differentiate the individual blocks within each design.
It was striking to note the differences in her performance on the Similarities and
Picture Concepts subtests. These both involve the ability to apply fluid reasoning
abilities to establish increasingly abstract associations between objects and con-
cepts. Their primary difference lies in input modality, with verbal presentation and
response on Similarities vs. the visual presentation and selection of response (either
verbally or by pointing) from groups of pictured objects on Picture Concepts.
Catherine scored in the average range when the items were presented verbally but
in the deficient range when she had to view the options and choose. Her poor
performance in the Picture Completion subtest also underscored her difficulty
accessing and organizing visual gestalts and differentiating essential details within
them. Her ability to recognize, access, and retrieve information through the visual
input channel appeared to be significantly compromised.
Catherine showed marked contrasts in performance across the Working Memory
subtests and supplementary measures. She was consistently in the average range on
measures of immediate rote recall for letters and numbers, thus demonstrating
adequate ability, through both the auditory and visual input modalities, to register
and promptly recall various nonmeaningful items in correct sequence. In contrast,
she did poorly on all of the mental manipulation tasks, which require registering
input, organizing it in some way, and then responding. She was also weak on the
Spatial Span subtest, which requires ability to maintain a spatial pattern in memory,
then copy it exactly or in reverse. This pattern of functioning suggested that
Catherine’s basic encoding of information (other than more spatially oriented)
was intact but that the transfer to the working memory centers was inefficient.
This would likely contribute to difficulties relating new information to previous
knowledge, recognizing larger implications of information, maintaining under-
standing of concepts while also attempting to copy from the board or take notes,
and responding to test items that use distracters or foils.
Catherine’s scores on the Processing Speed measures were also significantly
lower than her verbal abilities, though somewhat better than her perceptual organi-
zation and working memory abilities. She had most difficulty on a task requiring her
to scan a row and find items matching to a stimulus. Her low average score in
Coding was likely effected most by her slower visual motor speed, as was seen in
her borderline score in the Coding Copy supplemental subtest. On the Cancellation
subtest, she benefited significantly from the added organizational structure in the
second trial (difference of 4 scale points).
Previous measures of Catherine’s visual motor integration had shown this to be
an area of weakness. The current assessment validated this, as her VMI score was
significantly low. Other observations of her graphomotor output via writing sam-
ples and drawings also suggested delays: she made dark, heavy lines, was accurate
but somewhat slow in her letter formation and writing, and showed a high degree of
pencil pressure, and her drawings were quite immature and ill formed for her age.
Additional assessment of Catherine’s memory was accomplished via the Cali-
fornia Verbal Learning Test for Children (CVLT-C). On the CVLT-C, Catherine
was relatively consistent in her performance, showing average total recall over the
five trials, immediate recall upon initial presentation of the list, and cumulative
recall by the fifth trial. She maintained adequate recall after the interference list was
read and after a 20-min delay, and was able to recognize words from the list
adequately when read to her. An area of weakness was seen in her failure to benefit
from—and in fact the detrimental effect of—the organizational cues provided in the
short and long-term recall trials. This suggested that although Catherine was able to
store input adequately, she did not easily relate this information to previous
knowledge and use such categorical concepts for more efficient recall or to develop
or understand higher level relationships.
Assessments of tactile perception and aspects of executive functioning were also
completed. Marked disparity in fine manual dexterity was evident on the Grooved
Pegboard Test, as she showed moderate impairment in her dominant hand (left)
with severe impairment in her nondominant hand. Other measures of tactile per-
ception showed generally poor but variable performance, with severe impairment in
the dominant hand on finger tapping and grip strength vs. moderate impairment in
the nondominant hand, but much worse impairment on finger localization for the
nondominant hand. She also performed much more poorly bilaterally on complex
(single digit numbers) vs. simple (X or O) form recognition activities. Her planning
and sequential problem solving were in the borderline deficient range on the Tower
of London. Set maintenance and flexibility in shifting sets were severely impaired
on the Wisconsin Card Sorting Test, as were her abstract reasoning and concept
formation on the Booklet Category Test.
Catherine’s academic achievement also showed significant variability. Her
reading and writing skills were adequate, but she had very significant deficiencies
in mathematic reasoning and calculation. Within the reading assessment, Catherine
showed average ability to recognize words and comprehend written material. A
closer look at her comprehension suggested good ability to answer factual informa-
tion questions, but more limited ability to draw inferences, tie together concepts or
recognize more subtle meanings, especially in more lengthy passages vs. within a
single sentence or two. Her written output was also average, with adequate sentence
structure, punctuation, and grammar, though again she tended to be somewhat
simplistic and concrete in expressing her ideas on paper during the essay portion
of the assessment.
In contrast to these average abilities, Catherine showed marked and pervasive
deficiencies in almost all aspects of her mathematical knowledge. Although she
knew the steps of basic calculation, including adding fractions, she made frequent
errors in following these steps. Many of her calculation errors reflected her signifi-
cant visual-spatial deficiencies, as she failed to notice changes in sign (added
instead of subtracted), varied the directionality on subtracting (top from bottom),
and had trouble aligning the numbers. She was variable in demonstrating skills,
missing a simple item and then getting another similar or slightly more difficult one
right, though she was consistently unable to do even the simplest multiplication or
division problems (8 5; 12 6). She always used her fingers for adding and
subtracting (but still made errors, i.e., 6 3 ¼ 2). There was literally no automaticity
210 R.J. Clark
in her sense of math concepts or relationships. Of even greater concern than these
calculation errors was her marked inability to reason and think mathematically. She
was unable to translate mathematic language to solve very simple word problems,
understand or utilize visual representations of information (charts, graphs, icons), or
recognize errors or approximations of correct responses—even when presented
with choices.
The results of the Achenbach checklists completed by Catherine’s parents and
teachers were consistent with the pattern of functioning that led to her initial referral
(Table 21.2). The teacher checklist yielded mostly nonsignificant levels with the
exception of borderline clinical ratings on the Anxious/Depressed and Thought
Problems scales. The teacher’s written concerns focused on Catherine’s being
overly concerned about things she could not control, being distracted and ‘‘stuck’’
on frustrations with others, and difficulty focusing and responding to ongoing
demands for attention. Ratings from Catherine’s parents suggested significant
clinical concerns with withdrawal, anxiety, depression, and somatization, which
all contributed to a very significant elevation on the Internalizing scale. In addition,
concerns of social problems, attention, thought problems, and aggressive behaviors
were indicated. They reported that she ‘‘held it together’’ during school but at home
became easily agitated and loud, even if the simplest request was made of her. She
obsessed about certain topics, either very specific interests (pictures of famous
people, TV shows, Pokémon) or frustrations with school or peers, and was unwill-
ing or unable to engage in much discussion of solutions or interactions around
anything else.
On the basis of observations of her behaviors as well as the data available for the
present assessment, Catherine demonstrated a pattern of strengths and weaknesses
highly consistent with NLD, a neuropsychological construct hallmarked by a
significant discrepancy between relatively intact verbal capacities and rote auditory
memory skills as contrasted to significant weaknesses in visual constructive skills,
visual processing, tactile perception, and spatial/temporal reasoning (Table 21.4).
Most children with NLD have attention problems, struggle academically with
higher order thinking, comprehension, and mathematics in general, but develop
adequate word reading and spelling skills, have social difficulties due to poor
pragmatic language and failure to adjust to social/situational demands, and are at
significant risk for anxiety and mood disorders. Most also meet DSM-IV diagnostic
criteria for Asperger’s Syndrome.
It is interesting to look at how the newer version of the Wechsler scales
contributes to the understanding of the NLD profile. Although there is not a formal
procedure for diagnosing NLD, and it is not currently included in any classification
system, Rourke and his colleagues have proposed guidelines, which are under
investigation. While some of the stated guidelines are test specific, and not all of
Table 21.4 Classification principals for diagnosing NLD (ages 9–15 years)
1. Simple tactile-perceptual skills are superior to complex tactile-perceptual skills.
2. Single word reading is superior to mechanical arithmetic.
3. Straightforward and/or rote verbal skill are superior to those involving more complex
processing (e.g., comprehension).
4. Complex visual-spatial-organizational skills and speeded eye-hand coordination are impaired.
5. Memory for visual sequences is impaired.
6. Simple motor skills are superior to those involving complex eye-hand coordination, especially
under speeded conditions.
7. Complex tactile-perceptual and problem-solving skills under novel conditions are impaired.
8. Verbal skills are superior to visual-spatial-organizational skills.
First 5 features: Definite NLD
7 or 8 features: Definite NLD
5 or 6 features: Probable NLD
3 or 4 features: Questionable NLD
1 or 2 features: Low probability of NLD
Used with permission from http://www.nld-bprourke.ca.
the tests were administered in this assessment, the underlying principles for the
rules can be looked at relative to the present data, particularly concerning the
WISC-IV. In the present assessment, a significant difference was shown between
verbal and visual-spatial skills, as evident in the 31 point difference in Verbal
Comprehension and Perceptual Reasoning scores. The evidence regarding rote vs.
more complex verbal skills can also be seen within the Working Memory scale,
especially with the additional measures of the Integrated version, as immediate
recall was fine, but she struggled with more complex processing (Letter Number
Sequencing, Arithmetic), memory for location in space (Spatial Span), and orga-
nizing and manipulating information (Digit Span Backwards, Spatial Span Back-
wards). Speeded eye-hand coordination was also shown to be a weakness on the
core measures of the Processing Speed scale as well as the Coding Copy supple-
mental measure.
In addition to helping flesh out these variables, the WISC-IV integrated infor-
mation could assist in programming for Catherine. For example, the breakdown of
the Cancellation task showed that she did much better when the visual information
was more structured. Conversely, her core deficits in processing and performing
mental math were not improving by providing paper and pencil or written
equations. The depth of her perceptual organization difficulties seen on Block
Design was underscored with the supplemental multiple choice and Process
approach administrations. At the same time, her slightly better performance on
Matrix Reasoning and the supplemental Elithorn Mazes gives some direction to
task modifications that may help her utilize her visual processing system more
efficiently.
Once Catherine’s NLD was identified, the first intervention was to work on
educating her teachers and parents regarding the implications of this profile on her
academic and interpersonal functioning. Her school system was very receptive to
revisiting her Individualized Education Program (IEP) and making curricular
212 R.J. Clark
accommodations as necessary. Individual therapeutic intervention continued, with

an emphasis on increasing her awareness of her own strengths and weaknesses and
building a toolbox of coping strategies. The following recommendations repre-
sented some of the key concepts that were emphasized to all those involved in her
programming.
Catherine’s significant weaknesses in visual/spatial organization and reasoning
will impact her learning in multiple ways. She will struggle more with tasks and
materials that are inherently visual or spatial in their nature. More subtly, she will
not be able to rely on visualization strategies that are typically used to increase
efficiency in learning and recalling information and, most critically, that are often
assumed to be operating in giving instruction. Both in learning and interpersonally,
she will tend to rely exclusively and literally on verbal input and knowledge and
will ignore other important nonverbal strategies and sources of information. Al-
though it is important to play to her strengths, it is also important to continually
emphasize visual and other nonverbal aspects of materials and situations and not
give up on the visual channel but know that it has to be spelled out and attended to
much more specifically.
Developing a verbal script or dialogue helps tie together the ideas, steps, and so
on that are being taught, especially when there are strong visual components
(science activities, maps, charts, physical skills). Catherine tends to learn fragmen-
ted facts rather than linking together broader concepts, so utilizing some of her
verbal strengths will help build bridges between facts and ideas. This is especially
critical in math, where Catherine has failed to develop even a basic sense of
arithmetic relationships and the language of them. A literal dictionary of specific
math terms and a verbal script for how they are applied should be developed with
Catherine. These should be grouped by function (e.g., and, together, in total all
involve the adding function) with a phrase for use of each. Catherine’s direct
involvement, along with some creativity and humor, will be important in helping
this to become functional for her. Once the core terms and associated phrases are
established, examples and templates for when these terms might appear should be
generated, with an emphasis on real-life experience and need.
Providing Catherine with verbal and/or visual ‘‘templates’’ to organize key
information, emphasize priority in relation to other concepts, and establish essential
vs. less essential elements of the information would be of benefit, as would tapping
into Catherine’s solid verbal knowledge and vocabulary to mediate tasks that have
more spatial and motor output demands. She would benefit from describing the
activity in detail and building a verbal model for the physical characteristics and
actions of the task. It is not recommended that she rely on simply modeling (‘‘do it
like this’’) but rather verbalize the steps clearly and succinctly.
On the CVLT-C, Catherine did not benefit from cues about categories for
recalling a word list. This suggests an inefficiency in organizing and relating new
input to previous knowledge, which then affects recall on demand. It will be
important to provide her with conceptual cues, key terms, and ideas, being espe-
cially conscious during the teaching process about the types of cues and triggers,
which might be used to assess her understanding at a later point. It would be good to
engage her actively in this process by asking what she knows about a topic and how
this is similar to other material, for example.
Catherine continues to show a high degree of emotional reactivity, anxiety, and
poor regulation of affect, though she exhibits this mostly at home. It is difficult for
her to slow her own reaction in stressful situations, which exacerbates her already
poor ‘‘reading’’ of those situations and her ability to generate alternative behavioral
responses. At school, it appears that she will internalize this rather than express it
outwardly, though it is clearly impacting her concentration and contributes to lower
frustration tolerance and meltdowns at home. It will be important for significant
figures around her to model emotional reactions, awareness, and functioning.
Adults tend not to verbalize the problem solving process, but Catherine needs to
hear such things as feelings, content of the situation, and actions. For example, ‘‘I
was so upset! I could not understand why that lady cut in front of me in the grocery
line. I took a deep breath and decided to just let it go.’’
It is important to work to identify Catherine’s emotional state at the beginning of
a conflict cycle and to use words, tone, and expressions to let her know that she is
understood to be angry or disappointed, for example. She often does not recognize
that others understand her feelings and needs or that others have needs that can also
be accounted for in striving for her own agenda (poor ‘‘theory of mind’’). Establish-
ing that there is a shared recognition of her emotional state can, over time, help to
reduce her intensity and open the door for a problem solving dialogue. Being patient
and not immediately moving to restate the demand or give a solution allows her to
expand on or explain her emotional state before moving on.
Understanding nonverbal social signals (facial expression, body posture, tone
of voice) and integrating them into the rapid pace of reciprocal interactions can
be very challenging for Catherine. Group therapy and direct instruction of social
interaction skills will be important components of her treatment. For interpersonal
and social concepts, which are by nature more abstract, use of Social Stories (a la
Carol Gray) may be helpful. This is not simply a list of rules but should incorpo-
rate the present task demands, perspectives, and feelings of others as well as
Catherine, and how people will feel after successfully negotiating a problematic
situation.
Update
Three years after the initiation of the evaluation process, Catherine has entered the
11th grade at a large suburban school, working hard to deal with the rigors of high
school with a positive attitude. A creative and dynamic team constantly monitors
the curriculum to make appropriate accommodations while maintaining high
expectations for her learning. Emotional meltdowns and obsessive thinking are
greatly reduced at home. Challenges continue and many remain, but Catherine is
moving on a positive path and is feeling good doing so!
214 R.J. Clark
Nonverbal Learning Disabilities Proposed International Classification of Diseases

(ICD) definition:
The syndrome of Nonverbal Learning Disabilities (NLD) is characterized by significant
primary deficits in some dimensions of tactile perception, visual perception, and complex
psychomotor skills, and in dealing with novel circumstances. These primary deficits lead
to secondary deficits in tactile and visual attention and to significant limitations in
exploratory behavior. In turn, there are tertiary deficits in tactile and visual memory
and in concept-formation, problem-solving, and hypothesis-testing skills. Finally, these
deficits lead to significant difficulties in the content (meaning) and function (pragmatics)
dimensions of language. In contrast, neuropsychological assets are evident in most areas
of auditory perception, auditory attention, and auditory memory, especially for verbal
material. Simple motor skills are most often well developed, as are rote verbal memory,
language form, amount of verbal associations and language output. This mix of neuro-
psychological assets and deficits eventuates in some formal learning (e.g., academic)
assets, such as single-word reading and spelling. It also increases the likelihood of
significant difficulties in other aspects of formal learning (e.g., arithmetic and science)
and informal learning (e.g., as transpires during play and other social situations). Psycho-
social deficits, primarily of the externalized variety, often are evident early in develop-
ment; psychosocial disturbances, primarily of the internalized variety, are usually evident
by late childhood and adolescence and into adulthood (from http://www.nld-bprourke.ca).
Pragmatics Everything about communication that is not the words. Meaning that
is conveyed via facial expression, utterances, tone of voice (prosody), gesture,
posture, proximity, and even clothing!
References
Drummond, C.R., Ahmad, S.A., & Rourke, B.P. (2005). Rules for the classification of younger
children with Nonverbal Learning Disabilities and Basic Processing Disabilities. Archives of
Clinical Neuropsychology, 20, 171–182.
Pelletier, P.M., Ahmad, S.A., & Rourke, B.P. (2001). Classification rules for Basic Phonological
Processing Disabilities and Nonverbal Learning Disabilities: Formulation and external validity.
Child Neuropsychology, 7, 84–98.
Rourke, B.P. (1989). Nonverbal learning disabilities: The syndrome and the model. New York:
Guilford Press.
Rourke, B.P. (Ed.). (1995). Syndrome of nonverbal learning disabilities: Neurodevelopmental
manifestations. New York: Guilford Press.
Byron Rourke’s Web site, http://www.nld-bprourke.ca
Duke, M. P., Nowicki, S. & Martin, E. S. (1996). Teaching your child the language of social
success. Atlanta: Peachtree.
NLDLine (Sue Thompson’s support site), http://www.nldline.com/
NLD on the Web, http://www.nldontheweb.org
Stewart, K. (2002). Helping a child with nonverbal learning disorder or Asperger’s Syndrome.
Oakland, CA: New Harbinger.
Thompson, S. (1997). The source for nonverbal learning disorders. East Moline, IL: Lingui-
Systems.
Whitney, R.V. (2002). Bridging the gap: Raising a child with nonverbal learning disorder. New
York: Perigee.
Chapter 22
Beyond Diagnosis: Applied Behavior Analysis
Treatment of Moderate Autism Spectrum
Disorder
Christopher P. Wiebusch
Sam’s case, like many cases of Autism Spectrum Disorders (ASD), can challenge
the usual approach to neuropsychological assessment. It illustrates one application
of Applied Behavior Analysis (ABA) treatment and the incorporation of an
assessment model different from the typical rigorous use of norm-referenced
instruments. The criterion-referenced measure does not produce standard scores
or age equivalents but, rather, identifies more fine-tuned, skill-specific targets for
treatment as well as progress toward treatment goals through regular reevaluation.
Such an approach can be a highly practical resource that is directly applicable to
treatment, steering intervention by providing information not available from norm-
referenced measures of broader ability areas.
Sam was the first child born to a loving family, who watched him respond to
noises and speech as an infant and develop cooing, babbling, and jargon prior to age
2. His language development stopped, and he became less verbal and generally
appeared less happy at the age of 19 months. He no longer laughed and giggled as
he had previously, and he would engage in prolonged periods of staring or rolling
toy trains or cars back and forth. He did not respond when called. His parents
wondered whether these changes related to the coincident birth of his sister, with
whom he would not interact at the time. Speech and language evaluation at age
2 years and 3 months noted extremely limited expressive (9–12 month age-range)
and receptive (6–9 month age-range) language. Screening at that time indicated
normal hearing. When Sam was aged 2 years and 6 months, speech therapy
observations described the following as significant progress: he would leave the
couch, allow a therapist to touch him, respond to his name by turning his head when
called, and use one to two words. He preferred isolation. Although these observa-
tions were intended to communicate progress, they also reflected the severity of
Sam’s troubling symptoms. Although the difficulties were considered communica-
tion-related at the time, the implication that he had not been responding when called
by name was a meaningful clue of his impending broader ASD diagnosis. An Early
Childhood educational evaluation conducted in Sam’s home when he was aged

218 C.P. Wiebusch
2 years and 10 months indicated that he seemed aware of actions around him but
that he had poor eye contact and spoke mainly with jargon and screeches. Particular
delay in social and emotional skills was noted. Sam’s parents, attuned to develop-
mental concerns, attempted biological interventions often advocated for children
with his profile, including a casein (gluten) free diet and vitamin supplements,
without obvious benefit.
Sam’s mother, reflecting the reality of the family’s experience that is often
missing from the typical clinical summaries, wrote, ‘‘No one thinks it might happen
to them: to have a disabled child. . . to face the fact that our sweet little boy might
never be able to have an education, hold a job, or have a family of his own.’’
Test Results
At age 3 years and 3 months, after Sam had been attending speech and language
therapy for some time, he underwent another speech and language evaluation. At
that point records began to note that clinicians had suggested the possibility of
Pervasive Developmental Disorder, or Autism Spectrum, symptoms. Verbaliza-
tions continued to consist primarily of jargon, rarely with communicative intent. He
lacked eye contact, cooperative play, and age-appropriate imitation ability. His
expressive and receptive language delays continued, and diagnostic consultation to
consider an ASD was recommended. At age 3 years and 5 months, Sam was taken
to a pediatric neuropsychologist involved in Autism treatment. At that time, he had
limited social interaction, no gestural communication, and no peer interaction. His
mother wrote, ‘‘He only spoke a few words. He did not say ‘mama’ or ‘dada’ or
even ‘yes’ or ‘no.’ He could not follow simple directions or even respond routinely
to his own name. He would spend hours flipping through the pages of an address
book or phone book. He put up a barrier that was impossible for us to
break through and we felt helpless and frustrated.’’ However, he also had improved
modestly in responsiveness to others, was smiling more frequently, and, impor-
tantly, was demonstrating some possible affective reciprocity, such as smiling in
response to facial expressions. His language continued to be characterized
by much jargon and included stereotyped and scripted phrases, such as ‘‘mmm
cake’’ in any context related to food or hunger. He lacked communicative intent,
only infrequently communicating his desires as he typically attempted to fulfill
them independently. He did not ask questions. Although he aligned objects fre-
quently, his earlier agitation if the alignment was changed was subsiding as he
developed greater ability to tolerate change. He sometimes walked in circles or
spun his body.
Sam’s case, like so many early childhood ASD cases, raised the question of the
utility of traditional neuropsychological assessment. His ability to respond to
assessment sufficiently to produce a valid and useful profile, the cost/benefit ratio
of evaluation particularly considering the impending time and financial cost of
treatment, and administrative requirements in obtaining public funding assistance
22 Treatment of Moderate Autism Spectrum Disorder 219
suggested against a neuropsychological battery. Rather, he was evaluated diagnos-

tically through observations, careful clinical interview with his mother, and devel-
opmental ratings. These steps suggested that his diagnosis was clear, and the
evaluation turned primarily toward the goal of initial treatment planning. Therefore,
although standardized diagnostic assessment tools specific to ASD are available,
they were not components of Sam’s assessment at the time. Had there been
diagnostic doubt, additional standardized observational and symptom rating instru-
ments would have been employed.
Results of the Child Development Inventory indicated significant delays in
general development, including particular weaknesses in self-help skills, social
behaviors, expressive language, and language comprehension, all falling in the 14
to 16-month age-equivalent range. On the Scales of Independent Behavior—
Revised, serious delays were documented in social communication, personal living
skills, and community skills, all characteristic of a 1-year-old.
An ASD was diagnosed on the basis of communication impairment, including
primarily atypical and scripted phrases and jargon and very limited purposeful
communication; social impairment, including poor joint attention and affective
reciprocity, although interaction was not entirely absent; and some self-stimulatory,
stereotyped behaviors. Unlike many children with ASD, Sam had the strength of the
ability to tolerate changes in his environment without great difficulty.
Sam’s clinical presentation left little doubt about an ASD diagnosis. Sam was
considered a strong candidate for intensive treatment utilizing an Applied Behavior
Analysis (ABA) model. His emerging social responses and verbalizations, along
with his responses to initial teaching attempts, qualitatively suggested his ability to
further develop these and other seriously impaired skill domains.
Clarification of the nature of ABA treatment is critical. Although many of those
who are primarily engaged in assessment and diagnosis routinely refer to ABA
therapies, relatively few neuropsychologists provide ABA or are intimately familiar
with the methods. First, it is critical to understand that parents of a child newly
diagnosed with ASD face a crushing volume of information about an overwhelming
multitude of treatment options. (An Internet search for information on ‘‘Autism
treatment’’ yields 1.5 million Web sites.) Although a review of the variety of
treatments is well beyond the scope of the current discussion, it is important to
note that a parent in this situation is faced with having to choose between behav-
ioral, relational, educational, sensory, biological, dietary, medical, and other inter-
ventions, many of which contradict one another and all of which require time and
money. The diagnosing professional is in a position to provide guidance and
direction at a time when parents are emotionally and practically overwhelmed. In
providing direction, the professional benefits from the knowledge that ABA thera-
pies are broadly considered to have the most research support as effective in
220 C.P. Wiebusch
addressing deficits experienced by individuals with ASD (e.g., Cohen, Amerine-

Dickens, & Smith, 2006; Maurice, 1996; Sallows & Graupner, 2005).
Because of his pioneering and tremendous contributions to this field, the first
name typically associated with the application of ABA in Autism is Dr. O. Ivar
Lovaas. However, it is important to note that the Lovaas model of ABA therapy is
not synonymous with all ABA therapy. ABA is a broad field that utilizes techniques
and data from a number of models and contributors. What ABA programs have in
common is that they utilize scientific principles of behavior to build socially useful
repertoires and often to reduce problematic behaviors (Cooper, Heron, & Heward,
1989). ABA programs teach skills, or teachable subcomponents of larger skills,
through systematic analysis of the desired skills, intensity in terms of time and
repetition, and careful positive reinforcement of desired behaviors and elimination
of reinforcement of inappropriate behaviors. Data are collected continuously and
systematically to guide treatment and ensure efficacy. The ideal goal is to develop a
repertoire of functional, not simply scripted or ‘‘robotic,’’ skills that a child can
generalize to use in multiple environments.
Prior to beginning ABA treatment, Sam’s parents faced the difficult but common
experience of receiving conflicting professional advice. Although ABA was recom-
mended by some involved professionals, at least one professional advised against it.
This advice against ABA was reportedly given by a professional who was providing
a therapy in which Sam was not obtaining significant benefit. The critique was
based not upon specific clinical objections to ABA techniques or goals, but on a
general negative feeling about ABA. It is not uncommon in clinical practice to
encounter families who have been warned that ABA will simply teach repetitive or
robotic responses. Properly applied, ABA seeks to teach functional skills and to
generalize them to assist clients in using their new skills in a variety of settings,
with different people, and in response to varied demands. For example, if a child
learns to label a picture of an apple, it is critical that he be able to use the word apple
not only as a scripted response to the question, ‘‘What is it?’’ presented at a table by
a therapist. He must also be able to ask for an apple, name other pictures of apples,
name actual apples, tell his mother he sees an apple, understand that an apple is a
fruit, and so on. For many children with ASD, all of these varying uses of the word
must be taught, and different clients achieve different degrees of success in the
ultimate complexity and fluidity of the skills they develop.
Another critique of ABA that is often shared with families seeking treatment is
that it seeks to teach skills but does not cure the fundamental disorder of ASD. This
is true. Although some clients reach a level of skill development and symptom
improvement at which they no longer demonstrate a diagnosable ASD, this does not
hold true for most clients, and ABA providers typically do not claim to cure the
disorder. What ABA offers is not magic but roll-up-your-sleeves hard work to
address skill deficits and behavioral concerns.
Sam’s parents opted to pursue ABA, and Sam entered his intensive ABA
program prior to his fourth birthday. His treatment heavily included assessment
and intervention methods from the field of Applied Verbal Behavior (AVB), an
area of ABA that builds on Skinner’s (1992) analysis of verbal behavior to address
communication deficits. Skinner’s analysis behaviorally defines functionally dif-

ferent types of language (Table 22.1). In Sam’s program, teaching procedures were
utilized to teach specifically to each functional category of language. For example,
if he had learned through repetition to label a cup, he may not generalize this word
to functional use when he wished to request (rather than label) a cup. It was
necessary to teach the word as a request as well. This emphasis on teaching to
specific functions of language, going well beyond simple memorized labels for
therapy materials, was critical to Sam’s treatment and is a hallmark of the AVB
approach.
Early in Sam’s treatment, his profile of abilities was mapped using the Assess-
ment of Basic Language and Learning Skills (ABLLS) (Partington & Sundberg,
1998). (This instrument has been revised to form the Assessment of Basic Language
and Learning Skills—Revised; Partington, 2006). The ABLLS provides very de-
tailed assessment of a child’s mastery level in 25 important areas of functioning,
including cooperation, visual performance, receptive language, expressive commu-
nication, imitation, play, social interaction, group participation, academic and
school functioning, generalization, motor skills, and self-help (Table 22.2).
Unlike standard neuropsychological assessment tools, the ABLLS does not
provide norm-referenced standard scores but, rather, provides a grid on which the
presence or absence of specific criterion-referenced skills within each domain are
plotted. If a child possesses a particular skill, the small box for that skill is filled on
the grid, color-coded to reflect the date of the assessment. Each item has multiple
boxes that can be filled from left to right across the row to indicate the degree of
Table 22.1 Behavioral classification of language

Receptive Comprehending and following the instructions/requests of others. The tendency to
‘‘touch the red cup’’ when asked to do so.
Echoic Repeating what is heard. The tendency to say ‘‘cup’’ after another person does.
Imitation Copying the motor movements of another person. The tendency to sign ‘‘drink’’ after
another person does.
Tact Naming or labeling. The tendency to say ‘‘cup’’ because you see a cup.
Mand Asking for desired items. The tendency to say ‘‘cup’’ because you want a cup.
RFFC Receptive by Feature, Function, or Class: Receptively identifying items when the
feature, function, or class is described. The tendency to point to the cup when
asked ‘‘Which one do you drink milk from?.’’
TFFC Tact by Feature, Function, or Class: Expressively labeling items when the feature,
function, or class is described and the item is present. The tendency to say ‘‘cup’’
when looking at objects including a cup and asked, ‘‘Which one do you drink
milk from?’’ (Added in application after publication of source materials.)
Intraverbal Answering questions or giving conversational responses when the response is
determined by the words of another. The tendency to say ‘‘milk’’ when asked,
‘‘What do you like to drink?’’ when the milk is not in sight.
Textual Reading written words. The tendency to say the word ‘‘cup’’ because you see the
written word ‘‘cup.’’
Writing Writing words when they are spoken to you. A tendency to write ‘‘cup’’ when you
hear it spoken.
Adapted from Sundberg & Partington, 1998 and Skinner, 1957, 1992.
222 C.P. Wiebusch
Table 22.2 Skill areas assessed by the ABLLS (Partington & Sundberg, 1998)
Scale Title/skill area
A Cooperation and reinforcer effectiveness
B Visual performance
C Receptive language
D Imitation
E Vocal imitation
F Requests
G Labeling
H Intraverbals
I Spontaneous vocalizations
J Syntax and grammar
K Play and leisure
L Social interaction
M Group instruction
N Classroom routines
P Generalized responding
Q Reading
R Math
S Writing
T Spelling
U Dressing
V Eating
W Grooming
X Toileting
Y Gross motor
Z Fine motor
skill mastery or number of items acquired for that skill. Ratings can take many
hours and involve parents, teachers, therapists, and others familiar with the child’s
abilities. This information can guide initial treatment programming by identifying
skills in need of development and assist in school Individualized Education Pro-
gram (IEP) development by identifying target goals. Subsequently, repeat admin-
istrations are completed and plotted on the grid to demonstrate skill acquisition and
continuing areas of need. Intervention techniques were individually developed to
address each of Sam’s areas of skill deficit, both those identified by the ABLLS and
others as they arose. The assessment was updated at intervals of approximately 6
months and the grid completed in different colors corresponding to administration
dates to illustrate progress in each area over time (Tables 22.3–22.7).
After 6 months of treatment, Sam’s mother wrote, ‘‘It has only been 6 months but
the results are amazing. [Sam] now uses over 400 words and some short phrases. He
sings songs and has begun to take a real interest in the world around him. These are
things we never thought he might be able to do, but now we see small ‘miracles’
each day.’’
Table 22.3 Steven’s skill development on receptive language

C52 C52 C52 C52 C52
C51 C51 C51 C51 C51
C50 C50 C50 C50 C50
C49 C49 C49 C49 C49
C48 C48 C48 C48 C48
C47 C47 C47 C47 C47
C46 C46 C46 C46 C46
C45 C45 C45 C45 C45
C44 C44 C44 C44 C44
C43 C43 C43 C43 C43
C42 C42 C42 C42 C42
C41 C41 C41 C41 C41
C40 C40 C40 C40 C40
C39 C39 C39 C39 C39
C38 C38 C38 C38 C38
C37 C37 C37 C37 C37
C36 C36 C36 C36 C36
C35 C35 C35 C35 C35
C34 C34 C34 C34 C34
C33 C33 C33 C33 C33
C32 C32 C32 C32 C32
C31 C31 C31 C31 C31
C30 C30 C30 C30 C30
C29 C29 C29 C29 C29
C28 C28 C28 C28 C28
C27 C27 C27 C27 C27
C26 C26 C26 C26 C26
C25 C25 C25 C25 C25
C24 C24 C24 C24 C24
C23 C23 C23 C23 C23
C22 C22 C22 C22 C22
C21 C21 C21 C21 C21
C20 C20 C20 C20 C20
C19 C19 C19 C19 C19
C18 C18 C18 C18 C18
C17 C17 C17 C17 C17
C16 C16 C16 C16 C16
C15 C15 C15 C15 C15
C14 C14 C14 C14 C14
C13 C13 C13 C13 C13
C12 C12 C12 C12 C12
C11 C11 C11 C11 C11
C10 C10 C10 C10 C10
C9 C9 C9 C9 C9
C8 C8 C8 C8 C8
C7 C7 C7 C7 C7
C6 C6 C6 C6 C6
C5 C5 C5 C5 C5
C4 C4 C4 C4 C4
C3 C3 C3 C3 C3
C2 C2 C2 C2 C2
C1 C1 C1 C1 C1
6 month 12 month 18 month 2 year
Baseline
progress progress progress progress
Previously Newly Acquired

Mastered Skill Skill
Throughout treatment, his skills continued to progress, with growth spurts in

specific skills occurring at various times. In Receptive Language, Sam could
initially understand and follow receptive instructions to point to items such as
body parts and clothing. He made great progress during his first 6 months, obtaining
receptive understanding of items such as identifying objects when given a function,
feature, or class. He also quickly advanced in more advanced receptive skills, such
as following instructions to go to a person, walk to a person and get something, go
to a person and perform an action, identify common environmental sounds, and
select items that go with other associated items.
224 C.P. Wiebusch
Table 22.4 Steven’s skill development on vocal imitation

E9 E9 E9 E9 E9
E8 E8 E8 E8 E8
E7 E7 E7 E7 E7
E6 E6 E6 E6 E6
E5 E5 E5 E5 E5
E4 E4 E4 E4 E4
E3 E3 E3 E3 E3
E2 E2 E2 E2 E2
E1 E1 E1 E1 E1

Baseline

Table 22.5 Steven’s skill development on requests

F27 F27 F27 F27 F27
F26 F26 F26 F26 F26
F25 F25 F25 F25 F25
F24 F24 F24 F24 F24
F23 F23 F23 F23 F23
F22 F22 F22 F22 F22
F21 F21 F21 F21 F21
F20 F20 F20 F20 F20
F19 F19 F19 F19 F19
F18 F18 F18 F18 F18
F17 F17 F17 F17 F17
F16 F16 F16 F16 F16
F15 F15 F15 F15 F15
F14 F14 F14 F14 F14
F13 F13 F13 F13 F13
F12 F12 F12 F12 F12
F11 F11 F11 F11 F11
F10 F10 F10 F10 F10
F9 F9 F9 F9 F9
F8 F8 F8 F8 F8
F7 F7 F7 F7 F7
F6 F6 F6 F6 F6
F5 F5 F5 F5 F5
F4 F4 F4 F4 F4
F3 F3 F3 F3 F3
F2 F2 F2 F2 F2
F1 F1 F1 F1 F1

Baseline

While his motor imitation skills were strong at the outset of treatment, his vocal
imitation skills advanced significantly during the first 6 months of treatment. A
specific skill absent from his repertoire at the outset of therapy that he developed
during treatment included imitating the prosody of words and phrases. His use of
communication to make requests grew greatly throughout therapy. For example,
between approximately the second and sixth months of therapy, the frequency of
Table 22.6 Steven’s skill development on labeling

G42 G42 G42 G42 G42
G41 G41 G41 G41 G41
G40 G40 G40 G40 G40
G39 G39 G39 G39 G39
G38 G38 G38 G38 G38
G37 G37 G37 G37 G37
G36 G36 G36 G36 G36
G35 G35 G35 G35 G35
G34 G34 G34 G34 G34
G33 G33 G33 G33 G33
G32 G32 G32 G32 G32
G31 G31 G31 G31 G31
G30 G30 G30 G30 G30
G29 G29 G29 G29 G29
G28 G28 G28 G28 G28
G27 G27 G27 G27 G27
G26 G26 G26 G26 G26
G25 G25 G25 G25 G25
G24 G24 G24 G24 G24
G23 G23 G23 G23 G23
G22 G22 G22 G22 G22
G21 G21 G21 G21 G21
G20 G20 G20 G20 G20
G19 G19 G19 G19 G19
G18 G18 G18 G18 G18
G17 G17 G17 G17 G17
G16 G16 G16 G16 G16
G15 G15 G15 G15 G15
G14 G14 G14 G14 G14
G13 G13 G13 G13 G13
G12 G12 G12 G12 G12
G11 G11 G11 G11 G11
G10 G10 G10 G10 G10
G9 G9 G9 G9 G9
G8 G8 G8 G8 G8
G7 G7 G7 G7 G7
G6 G6 G6 G6 G6
G5 G5 G5 G5 G5
G4 G4 G4 G4 G4
G3 G3 G3 G3 G3
G2 G2 G2 G2 G2
G1 G1 G1 G1 G1

Baseline

his spontaneous verbal requests increased from approximately 15 to a range of 50–

85 during a 30-min period of activities intended to elicit requests. At baseline, he
was able to request only when prompted and only for a few items. Over time, he
developed abilities such as requesting using sentences, requesting that others stop
activities or remove items, and requesting information (asking Wh- questions).
Ultimately, he was making novel requests that had not been intensively taught
and was requesting spontaneously. He advanced significantly in labeling skill as
well, from primarily labeling nouns to labeling features of objects, adjectives,
noun–verb combinations, and emotions. Socially, he demonstrated development
in skills including showing interest in the behavior of others, eye contact, returning
and initiating greetings, looking at others to start an interaction, and conversing.
There was considerable variety in the areas addressed by Sam’s therapy, with the
underlying goal of teaching skills that he could apply functionally in his life. After 3
years of intensive therapy, he had mastered or advanced in the ability to follow
226 C.P. Wiebusch
Table 22.7 Steven’s skill development on social interaction

L22 L22 L22 L22 L22
L21 L21 L21 L21 L21
L20 L20 L20 L20 L20
L19 L19 L19 L19 L19
L18 L18 L18 L18 L18
L17 L17 L17 L17 L17
L16 L16 L16 L16 L16
L15 L15 L15 L15 L15
L14 L14 L14 L14 L14
L13 L13 L13 L13 L13
L12 L12 L12 L12 L12
L11 L11 L11 L11 L11
L10 L10 L10 L10 L10
L9 L9 L9 L9 L9
L8 L8 L8 L8 L8
L7 L7 L7 L7 L7
L6 L6 L6 L6 L6
L5 L5 L5 L5 L5
L4 L4 L4 L4 L4
L3 L3 L3 L3 L3
L2 L2 L2 L2 L2
L1 L1 L1 L1 L1

Baseline

receptive instructions, participation and engagement skills necessary for ‘‘Circle

Time’’ at school, the ability to identify helpful individuals in the community,
the ability to request attention and seek approval, the skill of requesting information
(i.e., asking questions), many conversational skills, some early preposition and
pronoun skills, academic skills including advancement in phonics and reading,
writing skills, game-playing skills, the ability to tell time, answering yes vs. no,
improved ability to answer the question ‘‘what is wrong,’’ the ability to describe what
he saw, and many self-help skills. Within the behavioral classification of language
utilized in AVB, Sam advanced from being a child with little communicative
language to demonstrating mastery of many hundreds of requests/mands, labels/
tacts, and 240 documented mastered intraverbals. He fluently requested what he
wanted and was able to understand and functionally use directions. In addition, he
was demonstrating improved connection to others, wanting to be included in activ-
ities and pictures and even negotiating about topics such as bedtime. Along with these
substantial gains, he did continue to demonstrate particular difficulty sustaining his
attention to activities as well as ASD symptoms including continued limitation in
social interaction and spontaneous conversation along with the use of scripted
language.
Although recommendations and target goals specific to Sam during his intensive
treatment are too numerous to list exhaustively, there are general recommendations
that were shared with his parents and can be useful for most families with children
involved in intensive ABA (Box 22.1). These recommendations can also be benefi-
cial in ensuring the efficacy of most intervention models.
Box 22.1 General Recommendations to Maximize the Efficacy of Intervention:

l Generalize skills to parents and other involved individuals. Parents should be instructed in
the intervention techniques and should carry them over into daily life outside of therapy to
maximize a child’s functional generalization of abilities.
l For problematic behavior, assess the function of the behavior in order to formulate an
effective intervention. Determining what reinforces or supports behavior will lead to more
effective strategies for changing it. For example, if aggression serves the function of
seeking attention, responding to it may reinforce the aggression whereas ignoring it
(when possible) may be a more effective response.
l Coordination between therapy providers is essential. A child with ASD typically receives a
multitude of educational, behavior, speech, occupational, and other therapies. Be sure that
any conflicting advice is resolved and that various individuals in the child’s life are
responding consistently.
l Whenever possible, make only one change in a child’s intervention at a time. It is common
to see a ‘‘shotgun’’ approach in which dietary, medication, behavior, and other strategies
are all initiated simultaneously, making it impossible to determine which intervention(s)
are having the observed impact.
l Collect data on goals to ensure that benefit is derived from intervention rather than relying
on subjective reports or feelings to determine progress.
Sam’s family faced another harsh, but common, reality: intensive ABA therapy
is, due to the large number of hours, expensive. During his intensive treatment, Sam
typically received between 20 and 30 hours of weekly therapy. Despite research
suggesting the long-run cost-effectiveness of intensive ABA (Jacobson, Mulick, &
Green, 1998), public funding is limited. Sam’s therapy hours were reduced after
1–1½ years due to governmental budget cuts, and his eligibility for funding of
intensive services ended after 3 years.
Update
Sam’s gains have been maintained, and he continues to receive a small number of
hours of therapy and consultation. His outcome and ongoing maintenance of gains
are very positively influenced by the active involvement of his family in utilizing
ABA techniques to sustain and advance his skills. In the most recent contact with
Sam’s family, 5 years after beginning ABA therapy and nearly 2 years after the
intensive treatment ended, his mother indicated that he is more communicative than
ever, plays with his sister, and attends school. However, Sam continues to have an
ASD and to require aide support in school, illustrating that although intensive ABA
dramatically improved his skills, it does not provide a cure.
Despite tremendous gains in making Sam able to communicate functionally, his
language, like that of many verbal individuals with ASD, is not age-typical. Speech
and language evaluation indicated language functioning more typical of a 3-year-
old at the chronological age of 7 years and 3 months. Similarly, despite mastery of
228 C.P. Wiebusch
many skills that Sam may not have learned without intervention, his adaptive skills
remain impaired for his chronological age.
This combination of hope and loss is evident in the words of Sam’s mother:
‘‘Autism is a disorder that steals a child’s personality and ability to relate to the
world around him. This type of therapy is the only real hope for these children and
their families. It is the only thing that has let us look forward to a brighter future. ’’
Applied Behavior Analysis (ABA) A field utilizing the principles of behavior to

build socially useful repertoires and often to reduce inappropriate ones.
Applied Verbal Behavior (AVB) A program or model of ABA utilizing Skinner’s
analysis of verbal behavior and highly effective teaching procedures from ABA to
teach verbal behavior.
Assessment of Basic Language and Learning Skills (ABLLS) A criterion-referenced
assessment of important skills in 25 domains that provides detailed information
regarding the skills a child possesses or lacks, allowing treatment providers to more
precisely target needed skills and to document treatment progress through regular
readministration (Partington & Sundberg, 1998). The updated version is the
ABLLS-Revised (Partington, 2006), and the Imitation (motor) and Vocal Imitation
scales have been expanded to include substantially more skills.
Autism Spectrum Disorder (ASD) Disorders falling under the category of Pervasive
Developmental Disorders intended to communicate that such disorders vary along a
spectrum of symptom presentation and severity.
References
Cohen, H., Amerine-Dickens, M., & Smith, T. (2006). Early intensive behavioral treatment:
Replication of the UCLA model in a community setting. Journal of Developmental and
Behavioral Pediatrics, 27, 145–155.
Cooper, J. O., Heron, T., & Heward, W. (1989). Applied behavior analysis. Columbus, OH:
Merrill.
Jacobson, J. W., Mulick, J. A., & Green, G. (1998). Cost-benefit estimates for early intensive
behavioral intervention for young children with autism—General model and single state case.
Behavioral Interventions, 13, 201–226.
Partington, J. W. (2006). The assessment of basic language and learning skills—revised. Pleasant
Hill, CA: Behavior Analysts.
Partington, J. W., & Sundberg, M. L. (1998). The assessment of basic language and learning skills.
Pleasant Hill, CA: Behavior Analysts.
Sallows, G. O., & Graupner, T. D. (2005). Intensive behavioral treatment for children with autism:
Four-year outcome and predictors. American Journal on Mental Retardation, 110, 417–438.
Skinner, B. F. (1992). Verbal behavior. Acton, MA: Copley. (original work published 1957)
Sundberg, M. L., & Partington, J. W. (1998). Teaching language to children with autism or other
developmental disabilities. Pleasant Hill, CA: Behavior Analysts.
Autism Society of America, http://www.autism-society.org

Carbone, V. J.; Workshop schedule, http://www.drcarbone.net/schedule.aspx
Different Roads to Learning, http://www.difflearn.com. Catalog of teaching materials.
Maurice, C. (Ed.). (1996). Behavioral intervention for young children with autism: A manual for
parents and professionals. Austin: Pro-Ed.
Verbal Behavior Teaching Materials Resource, vbteachingtools.com
Chapter 23
When Quirks and Quick Learning Create
a Quandary: Mild Autism
Elizabeth N. Adams
There was nothing Molly enjoyed more than a day at the zoo with her mother.
Immediately after entering the gates, she would run to the ‘‘Big Cats’’ house,
dragging her mother along. Molly was just like the other Big Cat loving kids,
because she relished watching the powerful animals prowl among the rocks and
hearing them make those big gut-busting growls just before lunchtime. But, shortly
after her third birthday, Molly’s very observant mother noticed that she was
different from the other Big Cat loving kids in some ways as well. When the
other kids saw the leopards, their wide-eyed facial expressions would turn quickly
to their parents’ faces and then back and forth between their faces and the cats. The
children’s tiny index fingers would automatically extend, as if instinctually pointing
to show these intriguing animals, to share the moment with their parents.
Although she felt excited inside just like the other kids, Molly’s external
response was very different. She did not attempt to share the experience with her
mother by looking or pointing; rather, she stared intently at the animals and
sometimes tapped two of her fingers together or made a clicking noise with her
mouth. Molly’s mother observed that she seemed like she was in her own world
during these times, ‘‘as if her wheels were turning constantly.’’ Her mother soon
learned at least part of why those wheels were turning. One day Molly approached
the exhibit and was able to accurately label the species name and country of origin
of each cat, from memory! At 3 years of age, she had developed quite an extensive
knowledge within this area of interest that seemed somewhat precocious.
Interestingly, Molly demonstrated advanced knowledge and understanding in
other areas as well. Her preschool teacher observed that she seemed to have an
uncanny knack for learning and remembering the alphabet. As an illustration,
one day while Molly was eating breakfast, she said (with her mouth full of cereal),
‘‘e-l-e-p-h-a-n-t spells elephant!’’
In the context of these vigorous interests and abilities, Molly’s parents had
become concerned about her around 2 years of age, when she did not seem to be
interested in playing with other children. They observed that she was ‘‘a little

232 E.N. Adams
different’’ and that she seemed to be ‘‘in her own world’’ most of the time. She
seemed content to engage in her own play while playing beside other children,
but she did not engage in cooperative or interactive play. She did not initiate or
maintain consistent eye contact with other children or with her parents.
As they became more concerned about her lack of social engagement, Molly’s
parents thought back and realized that from an early age, she had rarely expressed a
desire for anything. She had never used pointing to show them objects of interest or
to request treats. Her parents recalled that they had initially seen her as being laid
back or independent but that they were more concerned now that her lack of interest
or initiative seemed to be impairing most age-appropriate activities.
Because of their concerns, Molly’s parents enrolled her in several community-
based activities that would provide her with opportunities for social interaction.
However, despite their attempts to expose her to new experiences and encourage
her participation in social settings, her social difficulties persisted.
At that point, Molly’s parents consulted with her pediatrician to find more formal
intervention for her issues. The pediatrician recommended that she should undergo
a neuropsychological evaluation, which would assess Molly’s thinking and learning
abilities as well as her social and behavioral functioning to assign an appropriate
diagnosis and provide recommendations for intervention.
At the time of the evaluation, Molly was aged 3 years and 11 months. The
neuropsychologist conducted an extensive clinical interview with her parents to
gather more specific information about their concerns. The following information
was presented to the neuropsychologist and was later used to formulate a diagnosis
and develop a plan for intervention.
Molly was an 8-pound and 8-ounce baby following an uncomplicated pregnan-
cy. Delivery occurred 1 week after the due date; labor was induced with oxytocin.
There were no complications during the delivery. She was a healthy infant, and had
no difficulties with feeding or sleeping. Her parents reported no chronic or acute
medical problems. She was not prescribed any medications at the time of the
evaluation. All motor milestones were attained at a normal rate; she was toilet-
trained during the day and night at age 3 years and 6 months.
Although early developmental milestones for language were attained at a normal
rate (i.e., ‘‘mama’’ and ‘‘dada’’ at 10 months, single words at 12 months), by 24
months Molly’s vocabulary consisted of only 10 words. Because of concerns about
this delay, she underwent an evaluation with a speech and language therapist. She
attended six sessions of speech and language therapy and made some (though
minimal) progress. Then, suddenly during a family vacation her vocabulary
increased from 10 words to over 100 in the span of several days, and since that
time, her vocabulary development had been, in fact, quite precocious. However,
Molly’s parents did report some oddities in her use of language, most notably that
she tended to ‘‘parrot’’ a lot of what was said to her. Often, when given a verbal
instruction, she would repeat the last phrase of the instruction rather than follow it.
Thus, her language development was considered atypical, and she continued to
have some difficulties using her adequate vocabulary for the purpose of communi-
cating with others.
23 When Quirks and Quick Learning Create a Quandary: Mild Autism 233
Molly’s parents described her play as very structured and almost obsessive, and
they stated that she did not engage in spontaneous pretend or make-believe play. For
example, she went through a phase during which she enjoyed playing with dolls, but
she did not create stories or pretend to have her dolls interact but rather lined the dolls
up very carefully and became upset if one of the dolls was moved from its position.
Also, her parents bought her a kitchen center, in hopes of encouraging her to engage
in pretend play with a lifelike activity, but she did not pretend to use the kitchen to
cook anything and instead repetitively organized the dishes.
Molly’s parents reported that she thrived on routine and became very upset when
the routine she had intended was changed. They were especially baffled by this,
because they had intentionally exposed her to a wide variety of environments,
people, and activities during her early childhood in hopes of encouraging flexibility.
They did not follow a strict routine themselves; rather, Molly seemed to impose
routine on her own.
When under stress or apparently concentrating very hard, Molly often made odd
movements with her fingers. She would hold three fingers up and look at them for
several seconds, and she would tap two fingers together on both hands simulta-
neously. Also, she sometimes made a ‘‘ticka-ticka’’ noise repetitively until asked to
stop. Molly had not successfully demonstrated use of a computer mouse but seemed
to be obsessed with rolling the track ball back and forth. Her parents also expressed
concern about her tendency to eat nonedible items such as worms, bugs, sand, and
sidewalk salt. They felt that she seemed to eat these items intentionally.
In addition to Molly’s previously described proclivity for knowledge about
animals and words, she also demonstrated an impressive ability to memorize
sections from stories and movies but did not seem to understand the overall plot.
For example, she could recite sections from the Lion King but did not understand
who was good and evil. Also, her favorite book was Where the Wild Things Are, and
she could anticipate and recite specific sentences from the book, but she did not
seem to understand what happened to the boy in the book.
Molly’s parents were concerned about her inconsistent following of instructions.
They noted that she seemed to hear what was said and would respond appropriately
sometimes, but she often behaved as if she was not aware that someone had given
an instruction. They observed that she tended to respond more consistently when in
a one-to-one situation, where she received multiple prompts to follow through with
the instruction.
Molly’s parents enrolled her in a 3K classroom, hoping that consistent partici-
pation with same-age peers in a structured setting would help to facilitate develop-
ment of social skills. They noted that they were not concerned about her academic
skills, because they perceived that she had demonstrated age-appropriate achieve-
ment in that area. However, per parent and teacher report, Molly had not, thus far,
succeeded socially in her classroom and continued to have problems with compli-
ance most days. Molly’s teacher and her parents observed that she did not seem to
be bothered by her difficulties in the classroom. She seemed somewhat oblivious to
those around her and seemed to be in her own world.
234 E.N. Adams
Assessment
The assessment was conducted over four sessions. The first session involved
Molly’s parents for the clinical interview described earlier. For the second session,
Molly participated in neuropsychological testing for about 90 min and then played
with her mother while the neuropsychologist observed her play behaviors. In the
third session, Molly finished her neuropsychological test battery and then played
with her father while being observed. During the fourth session, Molly’s parents
met with the neuropsychologist to discuss feedback on the test results, diagnostic
formulation, and recommendations.
Molly hid behind her mother when introduced to the examiner, and did not
cooperate when asked to separate from her mother for the testing session. Her mother
accompanied her to the testing area, and with some positive motivational techniques,
Molly was able to separate to begin the testing. She fidgeted often during testing and
was easily distractible but responded well when redirected to the task. She echoed
many of the examiner’s phrases verbatim throughout the evaluation. Sometimes,
when asked a question, she repeated the question instead of answering it. For
example, when asked how she was doing, she responded, ‘‘How are you doing?’’ in
the same prosody the examiner had used. She was also observed to speak in a manner
that sounded similar to speech one might use if teaching. For example, when given a
triangle-shaped block, she stated, ‘‘Triangle. Let’s count the sides: 1, 2, 3.’’ After
saying this, she did not indicate by looking at or showing that she was interested in a
response from the examiner but rather continued to repeat the phrase with the same
prosody until redirected. As was later corroborated by her mother, it was possible that
phrases like this were phrases Molly had remembered from school or educational
videos. Throughout testing, she appeared to enjoy the presentation of each new task
and the accompanying stimuli; however, she did not share her enjoyment with the
examiner. She made eye contact only minimally and did not use her facial expres-
sions or other gestures to communicate with the examiner. In spite of this constella-
tion of odd behaviors and minimal social interaction, her attention to each task and
her compliance with instructions were, for the most part, adequate to ensure that the
findings reported were a valid estimate of her current abilities.
Test Results
Molly’s neuropsychological test battery was designed specifically to assess her core
cognitive ability, as well as more specific domains of functioning (e.g., language,
attention, executive functioning, visual-spatial perception, and motor performance)
that have been found to be salient during her particular stage of development. In
addition to formal tests of cognitive functioning, social and behavioral functioning
was assessed by observing her during two separate interactions with each parent.
Assessment of general cognitive abilities was performed using the Differential
Abilities Scale – Preschool Version (Table 23.1). On this measure, Molly’s perfor-

Differential Abilities Scale – Preschool Version Scorea Percentile
General conceptual ability score 89 23rd
Verbal comprehension [29] 2nd
Naming vocabulary [53] 62nd
Picture similarities [29] 2nd
Pattern construction [48] 42nd
Copying [62] 88th
Early number concepts [47] 38th
a
mances combined to a composite intellectual ability score in the average range,

with comparable verbal and nonverbal composite scores. Of note, the pattern of her
performances on subtests demonstrated a relative strength (average performances)
on tests that require concrete or often-practiced skills (e.g., labeling single objects,
copying shapes, counting, and constructing designs), when compared with weaker
(moderately impaired) performances on a test that required more flexible reasoning
skills (e.g., indicating analogies between pictures) and a test that required following
multistep instructions. These findings were consistent with her parents’ report of
her impressive ability to remember specific facts but her marked difficulty in
following instructions and solving simple problems.
Molly’s behavioral responses were not ideally conducive on a fine motor
dexterity test. Her performances were well below average bilaterally, likely indi-
cating a combination of less-than-optimal compliance and possible fine motor
control difficulties. She did not comply with the instructions on a fine motor
speed planning task, resulting in above average time scores but below average
accuracy scores. Performance on this particular task was considered to be indicative
of her difficulty following instructions, rather than fine motor precision. She was
able to imitate seven hand positions with each hand, yielding scores in the above
average range bilaterally. Taken together, results of formal tests of motor function-
ing were variable and more representative of behavioral compliance than motor
control. There were no indications of lateralized motor dysfunction.
Formal tests of attention and executive functioning are relatively well-estab-
lished for school-aged children and adolescents. However, assessment of these
areas in preschool-aged children is at an earlier stage of refinement. Thus, some
of the measures used in assessment of these functions remain in the experimental
phase and were interpreted with caution (Table 23.2).
Molly’s performance on a test of visual attention was average for both time and
accuracy (Table 23.3). Her performance on a test of sustained impulse control,
which required her to stand still like a statue in spite of several sound distracters,
was slightly below average. On a measure of her ability to learn an alternating
pattern of rewards, she demonstrated some understanding of the concept of search-
ing in alternate wells for a reward and correctly anticipated the switch three times,
which was slightly below average compared with other children of her age.
236 E.N. Adams

Bracken Basic Concept Scale – Revised Score Percentile Age equivalent
School readiness composite 124 95th 5–1

Tests Score Percentile Age
equivalent
Purdue Pegboard
Preferred hand 67 1st
Nonpreferred hand 89 23rd
Both hands 73 4th
NEPSY
Sensorimotor domain 94 34th
Imitating hand positions (14) 91st
Preferred hand >75th
Nonpreferred hand >75th
Visuomotor precision (4) 2nd
Train
Time >75th
Errors 3rd–10th
Car
Time >75th
Errors 3rd–10th
Attention/executive scale 91 27th
Visual attention (11) 63rd
Bunnies
Time 26th–75th
Omissions 26th–75th
Cats
Time >75th
Statue (6) 9th
Delayed alternation 82 10th
Luria’s Tapping Test 80 9th
Clinical Evaluation of Language Fundamentals –
Preschool
Receptive language 85 16th
Sentence structure (2) <1st <3–0
Concepts and following directions (10) 50th 3–11
Basic concepts (10) 50th 3–9
Expressive language 85 16th
Word structure (7) 16th <3–0
Expressive vocabulary (7) 16th <3–0
Recalling sentences (8) 25th 3–2
Language content 95 37th
Language structure 75 5th
Total language 73 4th
(continued)

Tests Score Percentile Age
equivalent
Kaufman Assessment Battery for Children
Gestalt closure (9) 37th
Beery-Buktenica Developmental Test of Visual-Motor 88 21st 3–0
Integration
Vineland Adaptive Behavior Scales – Second Edition
Communication domain 100 50th
Receptive 2–2
Expressive 3–1
Written 5–2
Daily living skills domain 85 16th
Personal 2–9
Domestic 3–5
Community 3–1
Socialization domain 66 1st
Interpersonal relationships 1–4
Play/leisure 1–0
Coping 1–6
Motor skills domain 81 10th
Gross 2–4
Fine 3–2
Adaptive behavior composite 80 9th
Parent form
Emotionally reactive [55] 69th
Withdrawn [82] >97th
Sleep problems [53] 62nd
Teacher’s report form
Emotionally reactive [66] 95th
Anxious/depressed [59] 81st
Withdrawn [61] 87th
Attention problems [64] 92nd
Aggressive behavior [64] 92nd
Importantly, she got stuck on one (erroneous) response for seven consecutive trials
and the beginning of the task. In other words, she continued to search in the same
well seven times despite the fact that she did not find a reward in that well. On a
measure of her ability to learn a rule set in response to the examiner’s tapping a
certain number of times, she did not consistently demonstrate understanding of the
more simple portion of the task. Instead of tapping according to the assigned rule
set, she copied the examiner’s number of taps. Thus, overall, Molly’s approach to
238 E.N. Adams
formal tests of attention and executive functioning corroborated her parents’ de-
scription of her difficulty maintaining consistent and appropriate responses when in
situations that required flexibility.
On a test of developmental language functioning, Molly demonstrated evenly
developed (average) levels of performance on the receptive and expressive language
composite, indicating that her basic use and comprehension of language was generally
consistent with what would be expected given her age. However, she demonstrated
below average performance on the language structure composite, indicating that the
manner in which she constructed phrases and sentences was not as well developed as
what would be expected given her age and her intact basic language functioning. This,
again, was consistent with her parents’ report. Though she demonstrated intact vocab-
ulary and labeling abilities, Molly had more difficulty in situations that required her to
express thoughts and feelings using sentences. Overall, her basic language skills were
intact, but her pragmatic use of those skills was delayed.
Molly’s performance on a test of visual perception, in which she was asked to
match increasingly complex geometric designs, was average.
Preacademic skills were assessed using the Bracken School Readiness Assess-
ment. Molly’s performance on this measure, which assessed her knowledge of
colors, letters, numbers, sizes, comparisons, and shapes, was above average.
Molly’s parents’ ratings of her adaptive functioning combined to form a score that
was below average in comparison with her same-age peers. A significant discrepancy
between skill levels was apparent on this measure, with communication skills as a
relative strength, in the average range, and socialization skills as a relative weakness,
in the significantly below average range. Of note, the communication subscale score
was relatively higher because of above average written communication skills, but
expressive and receptive communication skills were rated as lower. Daily living skills
and motor skills were rated to be slightly below average.
The two play interactions were included to provide an opportunity for observa-
tion of Molly’s play behaviors and social interaction skills. The interaction with the
primary caregiver was more structured, including a snack and a specific task to
complete, and the interaction with the secondary caregiver was unstructured,
including only free play with toys. This design allowed for comparison of Molly’s
behavior across two different settings, with varying levels of stress.
First, Molly and her mom were given a snack to share together. Her mom asked,
‘‘Where does Mom sit?’’ and Molly responded, ‘‘There,’’ but did not look or point to
indicate what she meant by this. Her mom asked again, and Molly gave the same
response. Then her mom asked a third time, and Molly said, ‘‘There’’ while pointing
to a chair, but she did not look to her mom or the chair.
Molly and her mom were given several puzzles to complete together. As they
worked on the puzzles, her mom asked, ‘‘How’s it go?’’ and Molly repeated this
several times in sing-song prosody. She showed interest in the puzzles and accepted
her mom’s help, but she did not make eye contact with her and did not use
nonverbal gestures to ask for help. As they worked together, her mom created
conversation and Molly made verbal responses but no spontaneous addition to the
conversation. Rather, she pointed and labeled colors and animals in the puzzles.
During a puzzle depicting social situations, Molly did not seem to understand the
scenarios and did not independently succeed at completing it. Her mom asked concrete
leading questions about specific details of the pictures to help Molly succeed. When
they transitioned together to a shape-sorter puzzle, Molly demonstrated interest in the
shapes. She labeled a pentagon, and said, ‘‘Triangle. A triangle has three sides: 1, 2, 3,’’
as if repeating something she had heard previously. Throughout this structured task,
Molly protested verbally quite often, saying, ‘‘No, no!’’ in a loud voice when her mom
made suggestions, but her emotion and behavior did not match. She complied easily
and quickly after saying, ‘‘No, no!’’
Molly engaged in very minimal eye contact with her mom throughout this
interaction. When she did look to her mom she seemed to be looking through her,
rather than sharing an interaction with her. She demonstrated frequent use of
echolalia, repeating words her mom had spoken, with similar prosody. She engaged
in intermittent interactive communication with her mom, but her communication
included labeling and repetition of phrases heard earlier (either immediately previ-
ous or somewhat delayed) rather than spontaneous initiation of conversation. Her
social interaction was limited and somewhat scripted. Overall, Molly’s affect was
limited and she demonstrated no emotional reciprocity in her interactions with her
mom throughout this observation.
Molly and her dad were given several boxes of toys to play with together. A doll
house was set up on the table, and Molly immediately took the blocks that had
formed the house and stacked them as if they were individual shapes rather than a
pretend house. She repetitively stacked the blocks for several minutes and then
abandoned this without apparent completion or closure to the task and walked to the
other side of the room, pulled a puzzle out of a box, put it on the table but did not
attempt to complete it. Her dad encouraged her to complete the puzzle, asking
leading questions and structuring the task for her. She labeled one shape as a
pentagon, but it was in fact an octagon and her dad explained this to her. She
frequently repeated the phrase, ‘‘A g-reen t-riangle,’’ without apparent meaning and
continued repeating this phrase until she was redirected.
Molly then pulled toy mountains out of the dinosaur toy box and placed them
carefully on the table. Instead of taking dinosaurs out to have them play on the
mountains, Molly carefully lined up toy rocks on the mountains. Then she stood
back, paused, raised her arms briefly with her fingers in stereotyped positions, and
continued lining up toy rocks.
Throughout this interaction, Molly did not initiate conversation or joint atten-
tion, but she engaged and seemed to be most comfortable in scripted speech
interactions with her dad. When her dad would attempt to solicit spontaneous
speech or conversation, she would not respond appropriately and sometimes
engaged in repetitive behaviors that suggested she felt stress. Molly repeated the
ends of her dad’s phrases several times, getting stuck by certain phrases. She made
no eye contact with her dad and did not engage in any spontaneous make-believe
play throughout this interaction.
240 E.N. Adams
Having gathered information from the clinical interview, behavioral questionnaires,

formal testing, and behavioral observation, the neuropsychologist integrated multi-
faceted findings from Molly’s evaluation. The following paragraphs describe
the formulations regarding cognitive functioning and diagnostic impressions
regarding behavior. Recommendations are described in the final paragraphs and
were discussed with her parents during a formal feedback session.
Results of formal testing indicated that Molly’s overall cognitive ability level
was average in comparison to her same-age peers, with evenly developed verbal
and nonverbal reasoning abilities. Results of formal tests of motor functioning were
variable and more representative of behavioral noncompliance than motor control.
There were no indications of lateralized motor dysfunction, meaning that one hand
was not significantly worse that the other hand at performing these tasks. Her scores
on formal tests of attention and executive functioning were somewhat lower than
what would be expected for her age. She demonstrated average language function-
ing overall, but qualitative observation and formal testing indicated less well-
developed use of structure in language, difficulties with pragmatic use of language
for conversation, and very frequent idiosyncratic use of language. Adaptive behav-
ior functioning was assessed by her parents’ report and revealed a significant
discrepancy between communication skills as a relative strength (average, reflec-
tive of well above average alphabet knowledge) and socialization skills as a relative
weakness (significantly below average).
Molly’s current behavioral profile was consistent with a diagnosis of autism.
This diagnosis requires evidence of impairment in three primary areas: (1) social
functioning and an interest in social relationships; (2) communication (including
language and communicative intent); and (3) repetitive or stereotyped interests or
behaviors. Research with very young children suggests that the initial indicators of
the autistic spectrum disorders include lack of consistent use of pointing to show
objects of interest or to request objects out of reach, lack of eye contact, and
inconsistent response to their names.
For Molly, impairment in social functioning was evidenced by her inconsistent
use of eye contact, inconsistent response to her name, lack of emotional reciprocity,
preference to play alone rather than with others, and subsequent lack of
developmentally appropriate peer relationships. Impairment in communication
was evidenced by a lack of demonstrated ability to use her generally intact
vocabulary to engage in interactive conversation. Her stereotyped use of language
(e.g., immediate and delayed echolalia), lack of use of nonverbal gestures for
communication (e.g., pointing to show), and lack of spontaneous make-believe
play fall under this category as well. Finally stereotyped patterns of behaviors and
restricted patterns of interest (reported by her parents and observed during evalua-
tion) included odd motor mannerisms with her fingers, a repetitive ‘‘ticka-ticka’’
noise, excessive interest in animals and letters (to the exclusion of other develop-
mentally appropriate and interactive play), persistent adherence to routine, and a
tendency to seek out and eat nonedible items.
Within psychology, both clinicians and researchers continue to discuss specific
diagnostic delineations along the spectrum of Pervasive Developmental Disorders.
Autism, being the most ‘‘classic’’ of these diagnoses, has received the most atten-
tion over the years. Asperger’s Disorder, another diagnosis along the same spec-
trum, is very similar in some ways to autism. The two diagnoses are so similar that
professionals continue to debate whether they should be described as separate
entities or whether one actually fits better as a subset of the other. This debate
becomes especially relevant when clinicians observe children like Molly, who
actually fit some of the criteria for both disorders. Because Molly’s basic language
functioning was relatively intact, some might question whether she met diagnostic
criteria for Asperger’s Disorder instead of autism.
Diagnostic delineation is an important task that is necessary for continued
growth in psychology. Nevertheless, the most crucial part of the clinician’s job is
to provide truthful, meaningful, and helpful information to the patient and the
patient’s family. Thus, the primary task for helping Molly and her parents was to
provide the most accurate diagnosis possible, acknowledging the limitations of the
diagnostic process, while relying on the strengths of the process to understand
Molly’s behavior and develop appropriate recommendations.
In light of this, the neuropsychologist explained to Molly’s parents the areas in
which Molly’s presentation did not fit into the diagnostic criteria. It was empha-
sized that even though Molly demonstrated sufficient impairment in social interac-
tion to meet diagnostic criteria for autism, she demonstrated interest in attending to
some of her parents’ activities, and she participated in simple interactions with
them. However, many of her interactions with her parents and much of her language
use were stereotyped and repetitive. Also, although her impairment in using
gestures to regulate social interaction met diagnostic criteria for autism, she did
look to caregivers at times, though her eye contact was fleeting and not as functional
as would be expected for a child of her age. These aspects of her social interaction
suggested that she would likely respond well to treatment.
Also, one of Molly’s relative strengths was her ability to learn through repetition
and practice. She demonstrated knowledge and application of concrete skills
(especially early preacademic skills). Other skills (e.g., pointing to show, making
eye contact, using her language to engage in interactive conversation) did not seem
to come naturally for her. Thus, it was expected that, through therapy and ongoing
support from her parents, Molly would continue to make gains, especially in skills
that can be learned through concrete training and practice.
Given the results of this evaluation, it was recommended that Molly begin partici-
pating in applied behavioral analysis (ABA) therapy, sometimes referred to as
Lovaas therapy. This involves 20–40 hours per week of intensive one-on-one
242 E.N. Adams
behavioral modification to work on her communication, social, cognitive, and

emotional development, with the goal of allowing her to more effectively partici-
pate in developmentally appropriate structured situations, especially school class-
rooms.
As an alternative or adjunct treatment, Molly’s parents were also encouraged to
look into an additional form of therapy called Floor Time, which uses the child’s
play to teach her to communicate with others. By mirroring the child’s actions, the
therapist eventually teaches the child that she has an impact on other people and can
change or alter the actions of others, based on her own. Floor Time therapy then
builds on this fundamental principle of communication and teaches parents how to
develop more functional interactions with their child, based on play.
Speech and language therapy services were recommended. Molly had partici-
pated in speech and language therapy in the past, but when she made adequate
progress in vocabulary development, it was determined that she no longer needed
services. Although Molly’s basic receptive language and vocabulary were intact, she
demonstrated impairments in her ability to use language to communicate with others.
At one level, these impairments were related to her idiosyncratic use of language, but
Molly demonstrated difficulty with the pragmatic and structural aspects of language
beyond her idiosyncratic communication style. For these reasons, it was recom-
mended that speech and language therapy services be recommenced.
Social Engagement During the preschool years, social engagement facilitates the
child’s development on multiple levels, including language and cognitive function-
ing as well as interpersonal relationships. Some indications of social engagement at
these early ages are joint attention (i.e., pointing or using eye contact to share the
experience of seeing something with another person) and social referencing (i.e.,
looking to another for affirmation regarding an action the child is about to perform).
Applied Behavioral Analysis (ABA) Therapy A technique that uses repetition,
behavioral reinforcement, and concrete rewards to help the child learn and incor-
porate more adaptive communication skills into his or her social interactions, while
attempting to minimize the frequency of less adaptive behaviors.
Floor Time Therapy A technique developed by Stanley Greenspan, M.D., in which
the therapist follows and attempts to mimic the child’s play in hopes of teaching the
child through experience that his or her actions can impact the behavior of another
person. This approach emphasizes relationship and interaction with the overall goal
of facilitating more adaptive interpersonal skills.
References
Filipek, P. A., Accardo, P. J., Baranek, G. T., Cook, E. H., Dawson, G., Gordon, B., et al. (1999).
The screening and diagnosis of autistic spectrum disorders. Journal of Autism and Develop-
mental Disorders, 29, 439–484.
Macintosh, K. E., & Dissanayake, C. (2004). Annotation: The similarities and differences between
autistic disorder and Asperger’s disorder: A review of the empirical evidence. Journal of Child
Psychology and Psychiatry, 45, 421–434.
Toth, K., Munson, J., Meltzoff, A., & Dawson, G. (2006). Early predictors of communication
development in young children with autism spectrum disorder: Joint attention, imitation, and
toy play. Journal of Autism and Developmental Disorders, 36, 993–1005.
Volkmar, F. R., Lord, C., Bailey, A., Schultz, R. T., & Klin, A. (2004). Autism and pervasive
developmental disorders. Journal of Child Psychology and Psychiatry, 45, 135–170.
Wetherby, A. M., Woods, J., Allen, L., Cleary, J., Dickinson, H., & Lord, C. (2004). Early
indicators of autism spectrum disorders in the second year of life. Journal of Autism and
Developmental Disorders, 34, 473–493.
Attwood, T. (2006). The complete guide to Asperger’s Syndrome. London: Jessica Kingsley.
Autism Society of America, http://www.autism-society.org
Baron-Cohen, S. (1993). Understanding other minds; perspectives from autism. London: Oxford
Medical.
Chapter 24
On Eggshells: Pediatric Bipolar Disorder
Jeff was referred for a neuropsychological evaluation because of longstanding

concerns regarding his cognitive and emotional development. In fact, Jeff’s family
had been searching for diagnostic clarification and treatment since he was an
infant.
Jeff’s mother noticed something was ‘‘wrong’’ with him in early infancy,
although her pregnancy and delivery were without complication. He was described
as an infant who cried frequently and was not responsive to touch. Early assess-
ments identified Jeff as being approximately 3–6 months behind in many of his
developmental abilities. He was placed in a Birth-to-Three program where he
received cognitive, physical, occupational, and speech therapy. During the course
of these services, Jeff reportedly normalized in his developmental process as a
toddler. However, already he was demonstrating violent tantrums.
Specifically, Jeff exploded with sudden, violent mood swings directed toward
family members and pets, and at an early age, he began fire setting. At age 5, his
behaviors made attending school difficult, as he was often sent home. Jeff’s family
often felt they were walking on eggshells around him, because of his unpredictable
emotional reactions and aggression. During one outburst, Jeff’s pregnant mother
had to physically restrain him as he was threatening to kill her and his unborn
sibling. This prompted the family’s first attempt to get him psychiatric services.
Jeff was initially diagnosed with Attention Deficit Hyperactivity Disorder
(ADHD) and was prescribed risperidone. After starting the medication, he report-
edly did not sleep for 3 weeks and began hallucinating. He was placed in his first
psychiatric hospitalization, during which he was prescribed dextroamphetamine
sulfate. Again he experienced hallucinations and a decreased need for sleep and was
eventually placed on divalproex.
Approximately, at age 7, Jeff threatened to hurt himself and his family. The
police were called, and it took several family members and police officers to
restrain him in order to transport him to the psychiatric hospital. Following this
hospitalization, during which more medications were added to his treatment regi-
men, Jeff had an incident, which his mother described as appearing seizure-related.
While waiting for the school bus, he stated that he did not feel good, stiffened,
and lost consciousness briefly. He was taken by ambulance to the hospital.

Magnetic resonance imaging (MRI) and computerized tomography (CT) scans

were normal, and no seizure activity was diagnosed. He was released relatively
quickly, with a decrease in his ongoing medications. Interestingly, his mother
reported Jeff experienced several months of normalcy after this event, with no
tantrum behaviors and a more stable mood. However, over several months his
emotional and behavioral symptoms returned, including his combative tantrums,
and medications were once again increased.
One evening when Jeff was 9 years of age, he was struggling with his homework.
His mother tried to help him, while also encouraging him to take breaks and attempt
to manage his frustration level. However, on this night, Jeff was unable to moderate
his emotional highs and lows. He became unbearably angry and in a fit of hostility
charged out of the house. His mother ran to the window in time to see Jeff emerge
from the garage with a sledgehammer and head for the house. Fearing for her life,
his mother fled from her own child, leaving him at home and running to the police.
At this point, Jeff was hospitalized and then placed in a group home, where he has
remained and earns visitation with his family.
Jeff was eventually diagnosed with Bipolar Disorder, a pattern that runs in his
mother’s side of the family and for which she had also been treated. However,
despite diagnosis and various medication treatment combinations, he continued to
experience significant emotional and behavior problems both at the group home and
with his family on visits. Jeff had frequent mood swings, irritability, anger, aggres-
sive outbursts, as well as periods of time when he appeared depressed. His de-
pressed moods could last from several minutes to many days. During the depressive
episodes, Jeff reportedly displayed no interest in activities and would become
morbid. His thought processes were tangential and circumstantial, with excessive
or constant talking and pressured speech. Additionally, he had a history of sleep
difficulties when off medication, with an average of 3–4 hours of sleep a night
followed by constant energy throughout the day and no apparent fatigue. Socially,
Jeff had difficulty making friends. His dangerous and reckless behaviors often
alienated other children. Academically, Jeff started an Individualized Education
Program (IEP) for emotional and behavioral disability when he was in first grade.
He had advanced to the fifth grade but worked at a much lower grade level. Most of
his accommodations and modifications educationally were impacted by his ongoing
residential treatment status.
At the time of the neuropsychological evaluation, Jeff was experiencing a
medication washout, to reassess his health status and potential options for future
medication treatment. However, he remained on quetiapine 200 mg for sleep,
olanzapine as needed, desmopressin acetate 0.2 mg for occasional nocturnal enure-
sis, and propranolol 40 mg. Additional medical history included a genetic syn-
drome, which affected the growth of Jeff’s hair, skin, teeth, nails, and the function
of his sweat glands. However, no indications in research suggest that this disorder
should affect emotional functioning. Otherwise, Jeff was considered a healthy
teenager.
24 On Eggshells: Pediatric Bipolar Disorder 247
Test Results
Given Jeff’s past documented cognitive delays and his current emotional problems,
these areas were the focus of the neuropsychological assessment. The assessment
approach was kept flexible, and a positive reinforcement system for effort was used
in an attempt to manage Jeff’s low level of frustration tolerance.
Jeff was a 13-year-old young man with a prominent upper lip and no teeth.
His genetic syndrome reportedly resulted in the loss of his teeth, and he would
destroy any false teeth given to him. He left his mother to go to the examination
room willingly and established rapport quickly. However, Jeff’s social conver-
sation was tangential and difficult to follow. He frequently engaged in long,
disjointed, and repetitive stories. At times, these stories were delusional in nature,
centering around themes of getting rich quick or renovating his home into a casino.
Sustained attention was short, and he was distracted by both internal and external
stimuli. Significant impulsivity was also noted throughout the evaluation. Jeff was
only able to listen to directions and inhibit behaviors with overt prompts and
assistance.
Jeff’s overall intellectual abilities were not well represented by his overall Full
Scale IQ Score, because of a significant difference between his verbal and nonver-
bal skills (Table 24.1). Jeff’s verbal intellectual abilities were in the low average
range, while his nonverbal intellectual abilities were significantly higher and in the
average to above average range. This degree of ‘‘split’’ between nonverbal and
verbal abilities occurs in approximately 2.6% of the population. Current level of
academic skills acquisition was lower than what could be expected given his
intellectual functioning as measured on the WISC-IV. His academic abilities
were in the borderline to mildly impaired range (Table 24.2). Further evaluation

Working Memory Index 71 3rd
Similarities (7)
Vocabulary (7)
Comprehension (7)
Block Design (14)
Digit Span (9)
Coding (7)
Symbol Search (11)
a

Woodcock Johnson Tests of Achievement – Score Percentile Grade
Third Edition, Form A Equivalent
Academic skills 71 3rd 2.2
Academic applications 80 9th 2.8
Letter-word 76 5th 2.6
Calculation 65 1st 2.1
Applied problems 89 22nd 3.8
Spelling 64 1st 1.7
Writing samples 72 3rd 1.9
revealed Jeff had consistent strengths in visual processing, organization, and

reasoning. However, he experienced several significant cognitive weaknesses,
including weaker verbal than visually-based skills, as well as significant difficulties
with learning (Table 24.3).
Jeff’s visual-motor integration abilities were in the low average range. He
demonstrated low average abilities to recreate geometric designs of increasing
difficulty. Visual perception skills were consistent with other performances and
were in the average range. Basic fine motor dexterity was in the low end of the
average range.
Among executive skills, Jeff’s verbal fluency abilities were average; however,
during this task, he made a significant number of perseverative errors. Visual
fluency performances were in the average range as well but also included a
significantly high number of perseverative errors. Processing speed on a visual
scanning and sequencing task was in the overall average range. Jeff had mild
difficulties with rapid naming tasks, performing in the borderline to low average
range. He had significantly greater difficulties, performing in the severely impaired
range, filtering nonessential information on rapid naming tasks and responding
based on preset rules. More complex problem solving and concept formation
were slightly problematic, and he performed in the overall low average range.
Mild difficulties generating novel problem-solving approaches were noted. He
also demonstrated some difficulty utilizing spatial planning and learning from
rules provided, as well as minor difficulties inhibiting incorrect responses.
Jeff endorsed many depression symptoms including thoughts of hurting himself
or other people (Table 24.4). However, on further questioning, Jeff stated he had no
plans to hurt himself or another person and did not want to get into trouble. Jeff also
reported a decreased need for sleep. Emotional evaluation utilizing projective
measures supported behavioral observations, suggesting that Jeff struggled with
frequent delusional and unusual thought processes. His thought processes were
often tangential and circumstantial and became disorganized quickly, particularly
when he began to experience any form of emotional stimuli. This disorganization
resulted in many of Jeff’s conversations and emotional expressions becoming
unusual and inappropriate.

Visual Perception 102 53rd
Total number errors 116
Categories completed >16th
Trials to complete first category >16th
Trail Making Test
Condition 1: visual scanning (11)
Condition 2: number (12)
Condition 3: letter (9)
Condition 4: switching (12)
Condition 5: motor speed (13)
Parent Form
Inhibit [88]
Shift [85]
Emotional Control [83]
Behavioral Regulation Index (BRI) [92]
Initiate [76]
Working Memory [75]
Plan/Organize [74]
Organization of Materials [69]
Monitor [81]
Meta-Cognition Index (MI) [78]
Global Executive Composite (BRI þ MI) [86]
The formulation of Jeff’s cognitive functioning cannot be considered without

accounting for his significant emotional difficulties. Jeff experienced cognitive
disorganization likely related to a mild level of psychosis. Jeff demonstrated both
current symptoms and a developmental history consistent with Bipolar Disorder. It
is not uncommon for children and adolescents with severe Bipolar Disorder to
experience symptoms of psychosis. When evaluating an adolescent with such
significant symptoms of mental illness, it is important to utilize history and the
reports of caretakers to determine the primary symptom presentation. In Jeff’s case,
his mood symptoms included both manic and depressive episodes, which in the past
and currently occurred either independently or simultaneously with psychotic
symptoms. The lack of symptoms of psychosis without ongoing mood symptoms
Table 24.4 Emotional functioning

Children’s Depression Inventory
Negative mood 3 [54]
Interpersonal problems 5 [78]
Ineffectiveness 1 [44]
Anhedonia 9 [71]
Negative self-esteem 2 [51]
Total 20 [63]
Behavior Assessment System for Children
Parent rating scale
Hyperactivity [65] 92nd
Aggression [96] 99th
Conduct problems [110] 99th
Anxiety [48] 48th
Depression [86] 99th
Somatization [47] 45th
Atypicality [105] 99th
Withdrawal [41] 18th
Adaptability [30] 3rd
Social skills [32] 4th
Leadership [32] 3rd
Externalizing problems [97] 99th
Internalizing problems [63] 90th
Behavioral symptoms index [91] 99th
Adaptive skills [29] 2nd
ruled out a primary psychotic disorder such as Schizophrenia or Schizoaffective

Disorder. Cognitively, all of these major mental illnesses have been identified as
correlating with deficits in executive functions, with a wide variety of research
suggesting but not yet clearly defining other likely areas of cognitive weakness.
At the time of this evaluation, Jeff was on minimal medication, and he appeared
to have decompensated in his functioning, experiencing a return of symptoms,
including psychosis. Such disturbed emotional functioning probably negatively
impacted his overall ability to perform on cognitive testing but also demonstrated
the significant impact that his emotional problems have on his overall cognitive
abilities. Individuals like Jeff with significant mental illness often experience global
learning difficulties, memory problems, and problems with executive skills. Jeff
demonstrated better developed nonverbal than verbal abilities, along with learning
deficits related to processing and executive functioning problems. He appeared to
have significant difficulties with his initial attention to and processing of informa-
tion. He did not appear to transition information well from working to long-term
memory and, as a result, learned a lesser amount of information when initially
exposed than otherwise would be expected. Symptomatically, this appeared as a
globally based learning deficit. Additional testing of executive functions indicated
that Jeff had a difficult time with inhibition of behaviors, planning and organizing
his behaviors, and responding frequently in perseverative or inappropriate manners.
These difficulties often relate to problems with cognitive flexibility, planning and
organizing, and other executive abilities. In addition, they correlated highly with
the behavioral disturbances symptomatic of his mental illness.
The recommendations following an evaluation of an individual with a severe
mental illness such as Jeff have to educate those living and working with the
individual to recognize the extent of the illness and encourage consistent and
ongoing treatment. In Jeff’s case, a strong warning needed to be made that even
when in treatment, he remained at risk for aggressive and harmful behaviors toward
himself and others. As a result, he would require some amount of supervision and
monitoring, perhaps throughout his lifetime.
Given Jeff’s emotional state, as well as his pervasive difficulties with learning and
cognitive function, he would likely continue to struggle to achieve adequate academic
progress. As a result, his educators were encouraged to shift his academic focus toward
functional academics. He needed overt instruction to learn functional academics,
socially appropriate behaviors, and other skills necessary for independent living.
Recommendations included that Jeff’s school continue to provide an IEP under the
qualification of an emotional behavioral disability. The IEP needed to acknowledge
his difficulty functioning in a regular classroom environment and likely need for a
specialized classroom, with one-to-one or small group instructions. In addition, Jeff
continued to require a specialized behavioral plan to manage his emotional reactions
and aggressive behaviors. He should be provided a strict, structured behavioral
program, and it was important for the school to have a safety plan in place, both for
Jeff’s safety as well as the safety of those around him. Although he was likely not a
danger on a daily basis, he would continue to be at risk for decompensation, particu-
larly under times of stress, which could result in aggression.
Jeff continued to need medication treatment and monitoring for his mood
disorder and significant emotional difficulties. Although medication treatment for
Bipolar Disorder can be successful in managing many of the ongoing mood
symptoms, often individuals with such a lifelong history of symptoms appear
more treatment resistant. Individuals with these disorders often have to try many
medications to find the most successful, and likely require multiple medications.
Jeff’s family was strongly encouraged to work with a pediatric mental health
professional with experience working with Bipolar Disorder and to monitor his
medications closely.
In addition to confirming Jeff’s diagnostic status, this evaluation helped his
family better understand the impact that such a significant mental illness has on
all aspects of his functioning. Jeff’s family decided to begin considering various
long-term treatment options for him. Although it is difficult to say definitively what
Jeff’s prognosis will be, his longstanding history of emotional instability, violent
behaviors, and developmental delays suggest that he will likely continue to experi-
ence these difficulties and require some level of supervision and treatment through-
out his life. While attempts will continue to be made to encourage Jeff to increase
his coping skills and develop independent and functional living skills, his family
plans to determine potential long-term care and legal options for guardianship.
They also realize their continuous role to act as an advocate for him.
Attention Deficit Hyperactivity Disorder (ADHD) A disorder most often diagnosed

in childhood, requiring symptoms occur prior to age seven. Symptoms include
inattention and/or hyperactivity and impulsivity.
Bipolar Disorders A group of disorders that are characterized by extreme fluctua-
tions in mood. There are three major diagnoses that fall in this area: Bipolar I,
Bipolar II, and Cyclothymia.
Individualized Education Program (IEP) In the USA, an Individualized Education
Program, commonly referred to as an Individual Education Plan, is a mandated
requirement of the Individuals with Disabilities Act (IDEA). An IEP is required for
any person in the public schools who is found to meet the federal or state require-
ment for special education and related services. This individual document mandates
modifications or services in order for the student to achieve academic success.
References
American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders,
fourth edition, text revision. Washington, DC: American Psychiatric Association.
Birmaher, B. (2004). New hope for children and teens with bipolar disorder. New York: Three
Rivers Press.
Birmaher, B., Axelson, D., Strober, M., Gill, M. K., & Valeri, S. (2006). Clinical course of children
and adolescents with bipolar spectrum disorders. General Psychiatry, 63, 75–183.
Danielyan, A., & Kowatch, R. A. (2005). Management options for bipolar disorder in children and
adolescents. Pediatric Drugs, 7(5), 277–294.
Fristad, M. A., & Arnold, J. S. (2004). Raising a moody child: How to cope with depression and
bipolar disorder. New York: The Guilford Press.
Geller, B., & DelBello, M. (2003). Bipolar disorder in childhood and early adolescence. New
York: The Guilford Press.
Leibenluft, E., Charney, D. S., & Pine, D. S. (2003). Researching the pathophysiology of pediatric
bipolar disorder. Society of Biological Psychiatry, 53, 1009–1020.
Masi, G., Perugi, G., Toni, C., Millepiedi, S., Mucci, M., Bertini, N., et al. (2004). Predictors of
treatment nonresponse in bipolar children and adolescents with manic or mixed episodes.
Journal of Child and Adolescent Psychopharmacology, 14(3), 395–404.
Pavuluri, M. N. (2003). Early recognition and differentiation of pediatric schizophrenia and

bipolar disorder. Adolescent Psychiatry, 39, 1–11.
Suppes, T., & Keck, P. E. (2005). Bipolar disorder: Treatment and management. Missouri:
Compact Clinicals.
Vinton, D., Hommer, R., Fromm, S., & Berghorst, L. (2006). Fear circuit flares as bipolar youth
misread faces. Atlanta, GA: Georgia State University Press.
Carlson, T. (2000). The life of a bipolar child: What every parent and professional needs to know.
Duluth, MN: Benline Press.
Greene, R. W. (1998). Explosive child: A new approach for understanding and parenting easily
frustrated, ‘‘chronically inflexible: children.’’ New York: HarperCollins.
Lederman, J., & Fink, C. (2003). The ups and downs of raising a bipolar child. New York: Simon
and Shuster.
Papolos, D. F., & Papolos, J. (2007). Bipolar child: The definitive and reassuring guide to
childhood’s most misunderstood disorder (3rd ed.). New York: Broadway Books.
Singer, C., & Gurrentz, S. (2003). If your child is bipolar: The parent-to-parent guide to living
with and loving a bipolar child. London, UK: Perspective Publishing.
Waltz, M., & Lamb, L. (Eds.). (2000). Bipolar disorders: A guide to helping children and
adolescents. O’Reilly & Associates.
Chapter 25
It Helps to Know Genetic Basis: Williams
Syndrome as an Example of Cognitive Disability
Bonita P. Klein-Tasman, Frank J. Gallo, Kristin D. Phillips,

and Kathi M. Fine
When an adequate knowledge base is present, an assessment and intervention

approach that takes into account genetic disorder etiology can be particularly
powerful for children with genetically based neurodevelopmental disorders
(Dykens & Hodapp, 2001). To illustrate the importance of this etiological approach,
this case depicts the tailoring of assessment and intervention suggestions to a
particular intellectual disability syndrome, Williams syndrome.
Williams syndrome is a genetic disorder resulting from a hemizygous micro-
deletion on the long arm of chromosome 7. Genetic testing became available
commercially in the early 1990s, consisting of a FISH test (fluorescence in situ
hybridization) for the deletion of elastin, one of the genes in the Williams syndrome
region. Although the level of intellectual functioning in individuals with Williams
syndrome can vary greatly (from moderate intellectual disability to average range
intellectual functioning in some), characteristic cognitive and behavioral pheno-
types have been identified (Klein-Tasman & Mervis, 2003; Mervis et al., 2000).
At the time of assessment, Elvis was a 16-year-old boy with Williams syndrome,
whose parents sought additional insight about appropriate educational placement to
best meet his vocational, academic, and emotional needs. Elvis’ parents also
expressed concern regarding anticipatory anxiety and accompanying behavioral
outbursts, as well as difficulties maintaining attention. He was placed in a special
education tenth grade, with some integration into a regular education tenth grade
classroom. He received speech and language therapy, occupational therapy, social
skills training, and behavior management consultation at school. Prior to the
assessment, he also received physical therapy and adapted physical education.
Elvis was born full term at 7 lb and 11 oz, with a length of 20 inch. His Apgar
scores at 1 and 5 min were 10. His mother did not experience any health problems
during pregnancy and maintained adequate prenatal care. She did not smoke, drink
alcohol, or take any medications during her pregnancy. There were no medical
complications at birth or following delivery. As an infant, Elvis was quite irritable
and cried a lot. Developmental milestones were generally achieved late. He first
sat alone at eight months, stood upright at 15 months, and walked alone at

256 B.P. Klein-Tasman et al.
approximately 22 months. Elvis began using single words at approximately 17

months and phrases at approximately 30 months. He was trained for bladder at 5
years and bowel at 6 years.
Elvis was diagnosed with Williams syndrome at age 22 months on the basis of
clinical criteria (facial features, medical features), because there was no genetic test
at that time. His medical history was positive for hay fever and allergies to cats. He
had chicken pox at approximately 6 years and numerous ear infections. As a young
preschooler, he experienced some eating difficulties that included frequent vomit-
ing. Likely related to his diagnosis of Williams syndrome, he had hernia and
ganglion surgery at age 3½. At the time of assessment, he had sustained no
significant injuries. Elvis wore corrective lenses. He had received special education
services since age 3½ and repeated kindergarten one time.
Upon arrival at the clinic, Elvis introduced himself to each member of the
assessment team with a happy handshake. His eye contact was intense. He routinely
engaged others in conversation about topics of interest to him, sometimes inquiring
about their own experiences. He spoke in full, fluid sentences with generally
appropriate language content and somewhat exaggerated prosody. Elvis showed
some difficulty with sustaining attention. At such times, he was likely to engage in
conversation with the examiner rather than complete the task at hand. He occasion-
ally asked whether testing would be over soon but did not appear overly fatigued.
He was also somewhat concerned with making sure that he would get a break for
lunch. However, he was redirected without much difficulty and generally persisted
in the face of challenging tasks. Overall, the results of this evaluation likely
provided an accurate sense of Elvis’ abilities.
Test Results
Two measures examining intellectual abilities were administered, the Differential

Ability Scales (DAS) and the Kaufman Brief Intelligence Test (K-BIT). The DAS is
a broad measure of cognitive functioning that allows for separate examinations of
verbal, nonverbal reasoning, and spatial functioning, and is particularly useful for
children with Williams syndrome because of the wide range of subtest standard
scores that can capture patterns of strength and weakness. The K-BIT is a brief
cognitive assessment that does not include visuospatial constructive tasks, which
are particularly challenging for people with Williams syndrome. Using the combi-
nation of these measures allows for examination of overall functioning both
including and excluding visuomotor tasks.
At the overall level, Elvis’s intellectual abilities were in the mildly to moderately
impaired range (Table 25.1). As expected, his performance on the K-BIT was
stronger than on the DAS. At the cluster level, his performance on measures of
verbal and nonverbal ability was consistent across measures, with particular diffi-
culty in spatial abilities. Elvis’ pattern of strengths and weaknesses was further
illustrated by his performance on individual subtests of the DAS. He showed a
relative weakness with tasks involving visuospatial construction (drawing
25 It Helps to Know Genetic Basis 257
Table 25.1 Intelligence

Differential Abilities Scale
General Conceptual Ability Composite 49 <1st
Verbal Cluster 57 1st
Word Definitions [25] 1st
Similarities [22] 1st
Nonverbal Cluster 59 <1st
Matrices [29] 2nd
Sequential and Quantitative Reasoning [20] 1st
Spatial Cluster 50 <1st
Recall of Designs [20] 1st
Pattern Construction [20] 1st
Recall of Digits (Supplemental) [43] 24th
Kaufman Brief Intelligence Test
Composite IQ 58 <1st
Vocabulary 63 1st
Matrices 60 <1st
a

Differential Abilities Scale Score Percentile
Basic number skills 55 <1st
Spelling 61 <1st
reconstructing patterns with blocks), with performance on these tasks falling at or

below the ‘‘floor’’ of this measure. He also showed a relative weakness in numerical
reasoning. Performance on these tasks fell in the moderately impaired range.
He showed a significant relative strength in auditory verbal short-term memory,
as indicated by his performance on the Recall of Digits task, which fell in the
solidly average range. In sum, results of the assessment indicated that Elvis showed
a pattern of cognitive functioning that is characteristic of individuals with Williams
syndrome (Mervis et al., 2000).
The academic achievement subtests of the DAS were administered to gain a
sense of Elvis’ basic reading, mathematics, and spelling abilities. Elvis’ word
reading abilities fell in the low average range and were considerably stronger
than expected on the basis of his overall cognitive abilities. His mathematical
abilities fell in the mildly deficient range, consistent with his overall level of
cognitive abilities. His spelling abilities fell in the mildly deficient range
(Table 25.2). However, it should be noted that his performance on this measure
was likely affected by his difficulty with handwriting. He would likely have spelled
more successfully if he did not need to write the words but instead could type them
on a computer. Overall, Elvis showed a relative strength in word reading ability,
which is common for individuals with Williams syndrome.
The Clinical Evaluation of Language Fundamentals – Fourth Edition (CELF-IV)

was administered to gain a more comprehensive sense of Elvis’ language abilities.
Although Elvis spoke in fluid and complete sentences, structured assessment
indicated generally impaired language fundamentals. His strongest performance
on the CELF-IV was on tasks involving rearranging words to make a sentence
(borderline range), answering concrete questions about a paragraph presented
orally (low average range), repeating sentences verbatim (mild impairment), and
composing sentences with a target word (mild impairment). He showed his weakest
performance on tasks involving conceptual understanding, such as when asked
about the shared conceptual meaning of words or when asked to define the words,
with significant impairment on each of these tasks (Table 25.3). Overall, results of
the assessment suggested that his concrete language abilities were considerably
stronger than his more abstract or conceptual understanding of language. As is
common among individuals with Williams syndrome, Elvis’ somewhat stronger
concrete verbal abilities may cause others around him to overestimate his abilities
in other areas of functioning.
Although Elvis expressed a clear interest in social interaction, his mother
reported that he had very few truly reciprocal friendships. This is often seen
among individuals with Williams syndrome, who may appear on the surface to
have strong social skills due to a heightened drive to interact socially. However, the
ability to sustain meaningful social interactions is typically not strong. Elvis
appeared to have some awareness that he was not consistently socially successful.
Elvis’s mother completed the Child Behavior Checklist to provide a sense of
possible social, emotional, and behavioral difficulties. Elvis’s Total Problems and
Internalizing scores were both in the clinical range above the 90th percentile,
indicating a clinically significant difficulty in this area compared with others of
his age. His Externalizing score was in the borderline clinical range, indicating mild
difficulties compared with others of Elvis’ age. On specific ‘‘syndrome’’ scales, he
scored in the clinical range on the Thought Problems scale (e.g., he often could not
get his mind off certain thoughts or obsessions, had nervous movements like
shaking his legs and picking at his fingers, and bit his arm when he became
particularly frustrated). His scores on the Anxious/Depressed, Withdrawn/

Clinical Evaluation of Language Fundamentals Score Percentile
Recalling sentences (5) 5th
Formulating sentences (5) 5th
Word classes receptive (2) 1st
Word classes expressive (1) 1st
Word classes total (1) 1st
Word definitions (1) 1st
Understanding spoken paragraphs (6) 9th
Sentence assembly (7) 16th
Semantic relationships (1) 1st
Number receptions total (4) 2nd
Familiar sequences (3) 1st
Depressed, Social Problems, Attention Problems, and Aggressive Behavior scales

were in the borderline range.
More specifically, Elvis had multiple fears, was described as nervous, and
worried a lot. He sometimes lacked energy and preferred to be alone. He was at
times overly dependent on others, yet sometimes did not get along with others. On
the ‘‘DSM-oriented’’ scales, which are more relevant to traditional clinical diag-
noses, he scored in the clinical range on the Affective Problems and Anxiety
Problems scales. His scores on the ADHD Problems and Oppositional Defiant
Problems scales fell in the borderline range. It should be noted that this measure
was designed primarily for use with typically developing children; it is possible that
some of the difficulties endorsed (e.g., attention problems, social problems) would
be common for most individuals with less than average intellectual abilities.
Elvis’ teacher also completed a measure of problem behaviors. Her responses
indicated very few problem behaviors of concern. Scores did not fall in the
borderline or clinical range for any scales. It is possible that his behavior was
contrasted to other children in his classroom with special needs.
Given parental concerns related to anxiety, the Anxiety Disorders Interview
Schedule for Children – Parent Version was administered with Elvis’ mother as
respondent to get a sense of his emotional experiences, particularly related to
anxiety. She indicated that her main concerns about his emotional well-being
were that he showed strong anxious anticipation regarding both positive and
negative upcoming events and activities and was overly reactive to changes in
schedule. He showed some moderate social anxiety, particularly when talking with
peers over the telephone. He was also fearful of high places, having shots and blood
tests, and visiting the dentist. These fears did not interfere significantly with his life,
although there were some activities (e.g., diving off a high diving board) that he
would be unlikely to participate in. Elvis’ mother indicated that he did not show any
symptoms of depression at the time of assessment.
Although Elvis’ mother would not characterize him as a worrier in general, she
reported that he showed a significant amount of anticipatory anxiety. Specifically,
this worry, which might better be described as a preoccupation, was centered on
upcoming events and whether his daily activities would go according to plan.
He would become overly talkative and ask the same question about these activities
repeatedly, especially if there was any uncertainty that the events would actually
occur. This preoccupation often interfered with his ability to engage in any other
behaviors or activities. Elvis had great difficulty stopping this preoccupation once it
started and worried about upcoming events more days than not.
When he was worrying, Elvis was unable to relax, had particular difficulty
concentrating, and became easily upset. When he was disappointed at a change
in plans, he bit his hand at times. He would also cry or yell at people or at himself.
This anticipatory worry interfered significantly at school, with friends, and moder-
ately at home. It also bothered him greatly if he could not talk about it. Moreover,
most of his conversations with others focused on getting reassurance regarding these
events. It appeared that when he was engaged in a motivating activity, he experienced
fewer preoccupied thoughts. However, he did experience some of these thoughts
even when engaged in interesting tasks. The specificity of this anticipatory anxiety
did not meet formal diagnostic criteria for an anxiety disorder but appeared to be at
the juncture of generalized anxiety and obsessive‐compulsive behavior.
On the basis of informal report, Elvis’ teacher indicated that she too had
concerns about his emotion regulation. At the time of her report, she had seen
improvements over the previous year; whereas prior to that, if asked to change
seats, for example, he might argue, and now he would comply much more readily.
Even given this improvement, she saw him as at least somewhat anxious almost all
of the time and believed this must be difficult for him. He had clear difficulties
regulating his emotional responses and appeared frustrated and angry. He had
significant difficulty with what he perceived as large changes in routine (e.g., not
going to a work placement when he expected to go) and milder difficulty with
smaller changes in the classroom routine. He had a tendency to dramatically
interpret minor changes (e.g., ‘‘We’ll never be able to do that ever again!’’) and
melt down regarding bigger changes. His meltdowns consisted of verbal outbursts
and perseveration, as well as biting his hands and fingers. Elvis had never missed
school due to anxiety at the time of her report.
Symptoms consistent with Attention Deficit Hyperactivity Disorder—Predomi-
nantly Inattentive Type were also endorsed by Elvis’ mother, as are commonly seen
for children and adolescents with Williams syndrome. In particular, he often made
little mistakes on schoolwork or chores, was easily distracted, had trouble listening
to others, had difficulty finishing things that he started, had difficulty organizing
schoolwork, and disliked doing schoolwork due to concentration issues. He also
often lost things that he needed (e.g., gloves, hats). These kinds of difficulties were
present since preschool. His mother indicated that it seemed as if it were difficult to
get him to focus on tasks as needed, at least partly because of his strong preoccupa-
tions; it was as if it were difficult to get him to disengage.
Elvis’ mother reported continued difficulties related to toileting. He had two
accidents at school during the time of the assessment. He sometimes had a strong
sense of urgency and could not make it to the bathroom in time. Generally, he
appeared to urinate frequently, which is not uncommon for individuals with Williams
syndrome. He became anxious about getting to the bathroom on time, and his mother
usually planned carefully to make sure that she knew where bathrooms were and that
they were easily accessible (e.g., she would seek aisle seats when attending a play).
There were not any activities that the family avoided because of this issue. Elvis
periodically took medication to address his bladder control difficulties. Difficulties
with bladder and bowel control are not uncommon for individuals with Williams
syndrome and may be related to the genetic underpinnings of the disorder.
In summary, Elvis was an engaging adolescent with Williams syndrome. He

showed a pattern of cognitive and behavioral functioning that is characteristic of
individuals with Williams syndrome. His overall intellectual abilities fell in the
mildly to moderately impaired range. He showed the distinctive pattern of relative

strength in auditory verbal short-term memory and relative weakness in visuospa-
tial constructive abilities. His performance on a measure of intellectual abilities that
does not include visuospatial construction was stronger, falling clearly in the range
of mild impairment. Although he spoke in fluid and complete sentences, there was
evidence from assessment of his language skills that he showed stronger concrete
than abstract language abilities, as may be expected in those with developmental
delay. At the time of assessment, parental and teacher concerns related to anxiety
and coping skills were paramount. Elvis appeared to have significant difficulty
coping with major and minor changes in routine. He also experienced significant
difficulty with attention and concentration. Although there were improvements in
these areas, emotional regulation continued to be a challenge for him.
Recommendations for Academic Progress
Elvis’ strong concrete verbal abilities may cause others around him to overestimate
his abilities in other areas of functioning. It is important that the adults in his life
take care not to develop expectations for him that are unattainable, particularly in
academic tasks.
Elvis showed a relatively strong word reading ability. On the basis of his poorer
performance on more abstract language tasks, it is expected that he will show more
difficulty with reading comprehension, and further assessment is needed. If he
shows difficulty in this area, it would be beneficial to teach him step-by-step
strategies to improve his reading comprehension skills. The discrepancy between
his concrete and abstract language abilities should be steadily considered when
designing homework assignments for him. Elvis is most likely to be able to
complete assignments that concentrate on understanding concrete details about
what he reads independently. It is important that the expectations about the inde-
pendence of homework completion be made clear to him. If more abstract under-
standing is necessary, he will need teacher or parental support.
Given his graphomotor difficulties, the use of a computer would likely support
Elvis’ written language skills. Increasing his use of the computer may also have
important vocational benefit. Whenever possible, it would be helpful for him to
receive an electronic copy of assignments that is prepared by the teacher on a word
processor. This would greatly improve his ability to work on assignments indepen-
dently, because he would not need to coordinate use of an assignment paper and
computer.
A significant focus of Elvis’ academic curriculum was on developing vocational
skills. This is very appropriate and important in preparation of an ultimate transition
away from school and into the community when he graduates. According to his
mother’s report, he has responded well to the interventions implemented to improve
his job performance (e.g., work on compliance with job coach). It should be kept in
mind that many jobs for individuals with less than average intellectual abilities are
designed for people whose relative strengths are in motor skills and visuomotor
integration, precisely the tasks likely to be the most difficult for Elvis. It is
recommended that efforts continue to be made to concentrate his work training
opportunities in areas that do not rely heavily on motor abilities, when such
possibilities exist. If there is a motor planning component to job-related tasks, he
is most likely to succeed if there is also a social component, because he finds social
interaction extremely motivating. Because Elvis’ word reading abilities are strong,
jobs involving basic reading (such as sorting mail, for example) can be a good
match for Elvis. Elvis takes considerable pride in the responsibility of having a job.
Recommendations for Psychosocial Function
Mature social interaction is a challenge for Elvis. Although it may appear on the
surface that he has strong social skills, because he is quite interested in social
interaction, his ability to sustain social interactions is not truly an area of relative
strength. The gaps in social understanding between children with developmental
disabilities and their typically developing peers tend to grow exponentially in
adolescence. Elvis appears to have some awareness that he is not consistently
socially successful. Continued involvement in structured activities with both typi-
cally developing peers and, importantly, with peers with developmental disabilities
is likely the best way to work against social isolation. Fostering relationships with
other peers with special needs may be particularly beneficial because many of his
typically developing peers may go off to college in a few years. If possible, it would
be helpful to have Elvis practice social interaction skills such as calling peers to
arrange for outings or generating ideas for outings within the context of his social
skills groups (e.g., by having members of the group call each other).
To address Elvis’ anticipatory anxiety, it would be helpful to have him practice
adjusting to unexpected changes in routine and transitions. A hierarchy of transition
situations could be developed. He should be consulted so that he can provide an
understanding of what transitions or changes he imagines might be most difficult
and which ones might be easier. Each situation should be clearly rated according to
how difficult he thinks it would be to manage well in that situation. Care should be
taken with these ratings, as individuals with Williams syndrome tend to want to
please others, which may affect their subjective self-report.
At the bottom of the hierarchy might be a change to which clothes he can wear on
a given day or what food he will have for breakfast (from one thing he likes to another
thing he likes). At first, coping with such a change should be role played, without
actually requiring that there be a change in routine. These initial tasks should be very
easy for Elvis to cope with. This gives him a chance to practice responding appropri-
ately to the change without the stress of the actual change. Next, he could be asked to
agree on a possible activity where the plans might change (so that in fact he knows the
change is coming), and then asked to practice coping when the change in plans
actually takes place. It is critical that a reward system be put in place to reinforce him
when he attempts to cope (rather than when he succeeds at coping), even in the very
easy situations. Once Elvis demonstrates an ability to cope in these more contrived
situations, then the coping task can be made incrementally more difficult, moving
slowly up his hierarchy of difficult transitions and changes in plans. A similar
approach could be used to improve his responses to corrective statements at home,
in school, and in the context of vocational experiences.
It would be helpful to Elvis to make increasing attempts to regulate his own
emotions. One way of improving his self-regulation abilities is to help him develop
a repertoire of ‘‘adaptive self-statements.’’ These are phrases he can say that help
him to cope effectively with stressors. For example, when he says something
dramatic (e.g., ‘‘I will never get to do that again,’’ when plans are changed), it
would be helpful for adults around him to model the kind of statement that they
would hope he would make, which would reflect good emotional regulation. The
statement should be made calmly. For example, ‘‘Oh well, it looks like you won’t
be doing that activity after all today. You’ll probably get a chance to do it some
other time.’’ Sometimes it may be helpful to provide him with an adaptive response
to a request from another person and ask him to try it out and see how it works for
him. For example, if he is asked to move to another location and objects, his mother
might try saying, ‘‘Elvis, try ‘Okay, Mom. I will help you out.’ And see how it
feels.’’ These approaches take advantage of his strong rote language skills.
Many individuals with Williams syndrome tend to become preoccupied with
negative events. For Elvis, he tends to become preoccupied with upcoming events
more generally but particularly when he doubts whether an upcoming event will
actually happen. Sometimes, individuals end up getting more attention from others
when they express these preoccupations than when they do not (at such times others
are just relieved that the child does not seem preoccupied and so remain quiet).
It would be helpful to ensure that Elvis is differentially reinforced for coping
statements and for not being preoccupied by a transition, because he may come to
learn that if he makes negative statements, he gets more attention. For example, if
on a particular day he does not ask about when he will go to the regular education
classroom, he should be rewarded. This will require practice, but over time it may
become less of a habit to ask about the upcoming event.
Discussion
As is evident from this case description, Elvis has a number of cognitive, emotional,
and behavioral support needs. One central question for many families of children with
Williams syndrome is the extent to which their child’s behavior is similar to others with
Williams syndrome. Elvis’ pattern of needs may indeed be more closely anticipated by
his Williams syndrome diagnosis than by his current level of cognitive functioning. In
particular, he shows a characteristic cognitive profile of relative strength in rote
memory and relative weakness in visuospatial construction. Within his language
abilities, greater conceptual demands were associated with poorer performance.
In terms of academic functioning, word reading was an area of strength with

greater difficulty with more complex reading comprehension tasks. Mathematical
abilities were an area of relative weakness. His pattern of socio-emotional and
behavioral functioning was also emblematic of that seen in many individuals with
Williams syndrome. He experiences considerable anticipatory anxiety, emotional
regulation difficulties, and attention problems. Additionally, as this family prepares
for transition to adulthood, there are concerns about how best to support his
developing independence. Interventions that are useful for the kinds of difficulties
shown by people with Williams syndrome, taking into account patterns of cognitive
strength and weakness, are suggested for supporting Elvis’ functioning and are
strengthened by incorporating an understanding of the cognitive and behavioral
phenotype associated with this neurodevelopmental disorder.
Hemizygous Microdeletion A microdeletion means that one or more genes are

missing on a chromosome. These missing genes are typically not visible when
the chromosomes are all examined together under a microscope. Rather, more
complex molecular genetics approaches are required to see that the genes are
missing (see FISH test below for one such approach). Humans usually have two
copies of each gene—one on each of the pair of chromosomes. If only one copy of a
gene is missing, that is a hemizygous deletion. If both copies are missing, that is a
homozygous deletion. Homozygous deletions are rare because they usually affect
the viability of the fetus more strongly.
FISH Test FISH is an acronym for the laboratory process of ‘‘fluorescence in situ
hybridization,’’ which helps determine whether specific genes are missing from
chromosomes. There are many different FISH tests for different disorders. For
Williams syndrome, the FISH test is a blood test to detect the presence of the elastin
gene, which is one of the genes typically deleted in individuals with Williams
syndrome. The blood sample is treated with two specific colored markers that give
off a fluorescent light when exposed to ultraviolet light. One of the markers attaches
to each of the two copies of chromosome 7 in a cell. Another colored marker
attaches to the elastin gene on each copy of chromosome 7. For people with
Williams syndrome, only one copy of chromosome 7 will show the colored spot
for elastin—the other copy will be missing the elastin gene.
Graphomotor Difficulties Difficulties with the mechanics of writing. In the case of
Williams syndrome, these are likely related to motor planning, visuomotor coordi-
nation, as well as more basic fine motor difficulties related to muscle function.
Visuospatial Construction The most consistent difficulty seen in people with

Williams syndrome. It involves attempting to reproduce a visual image on the
basis of a sample (with blocks or by drawing) and incorporates both visual percep-
tion (seeing the component parts and how they fit together) as well as visuomotor
coordination and motor planning.
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adaptive behavior. Mental Retardation and Developmental Disabilities Research Reviews, 6,
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Semel, E., Wiig, E. H., & Wayne, S. A. (2003). Clinical evaluation of language fundamentals –
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www.williams-syndrome.org
Dykens, E. M., Hodapp, R. M., & Finucane, B. (2000). Genetics and mental retardation
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Semel, E., & Rosner, S. R. (2003). Understanding Williams Syndrome: Behavioral patterns and
interventions. Mahwah, NJ: Erlbaum.
Chapter 26
Mixed Bag: Tics, Compulsions, and More
Kenneth L. Grizzle
When Ricky was 6-years old and completing kindergarten at a parochial school, his
parents, teacher, and pediatrician were concerned because he was recognizing less
than half of the lowercase letters of the alphabet and inconsistently recognizing
numbers through 50. However, he could count beyond 100. Ricky made mild
articulation errors in spontaneous speech and continued to show difficulties se-
quencing multisyllabic words, features thought to reflect subtle remaining charac-
teristics of his previously diagnosed developmental apraxia of speech.
At home and school Ricky avoided all tasks requiring literacy. Although he
allowed his parents to read to him, he became restless and walked away when asked
to read decodable books or to engage in any type of writing. Although not
consistent, he sometimes became frustrated to the point of having emotional melt-
downs that included screaming and throwing items. Similar behaviors were seen
during initial testing.
Ricky had been diagnosed by a Speech and Language Pathologist (SLP) with
Developmental Speech Apraxia and Mixed Receptive/Expressive Language Disor-
der at age 18 months. He received speech and language therapy from that time until
age 4½ years through a private SLP and Early Childhood Education. Therapy was
discontinued after a language evaluation found language comprehension and for-
mulation to be at age level. Language testing by an SLP at 7 years and 3 months
included administration of the Test of Auditory Processing – Revised (TAPS-R);
memory span deficits were reported. A follow-up language evaluation was com-
pleted at age 9. Receptive and expressive language were within normal limits,
though based on a considerable split between receptive and expressive vocabulary,
and during conversation, word finding deficits were identified. Memory span
deficits persisted.
Maternal and paternal family histories were positive for dyslexia and mood
disorder. Comorbid with mood and learning disorders, Ricky’s father had a history
of anxiety and substance abuse. Developmental milestones with the exception of
language were within normal limits. Ricky’s mother and father agreed that their
son’s vocabulary developed normally until 9 months of age; he was using single
words and vocabulary consisted of approximately 15 words. However, Ricky

268 K.L. Grizzle
developed no new vocabulary over the next 9 months. At that time his parents
sought Ricky’s first language evaluation, and work with a private SLP began.
Ricky’s parents were separated when he was 4 years of age. He lived with his
mother and had periodic contact with his father for 12 months. Beginning at 5 years
he split time between his parents, spending 7 days with his mother and 7 days with
his father. Both parents were actively involved in Ricky’s life, including medical,
psychological, and educational care. Ricky’s mother retained primary custody even
though his placement was split. His parents’ relationship had historically been poor,
and a clear dislike for each other was palpable during treatment sessions. Neverthe-
less, both regularly attended all medical and psychological appointments and were
actively involved in Ricky’s care and treatment.
Initial Test Results
Initial testing with Ricky was completed during the summer after kindergarten. He
was 6 years and 5 months of age. The biggest concern was limited progress
developing early reading skills, so testing focused primarily on literacy.
Ricky was generally cooperative and persistent on tasks, but when asked to
engage in reading-related activities, he was resistant and attempted to distract the
examiner by asking irrelevant questions. When struggling to recognize letters and
read two- or three-letter words, he was noticeably distressed, including becoming
tearful and attempting to calm himself down with deep breathing. Ricky regularly
licked his fingers and rubbed them beneath his eyes. No other habitual behaviors
were noted or reported by his parents, but when this behavior was pointed out, both
parents agreed that they had seen it but thought it was the result of allergies.
Cognitive testing globally fell within the average range, though nonverbal
reasoning and spatial skills were high average (Table 26.1). All subtest scores
fell within the average range with the exception of Recall of Objects-Delayed,
which fell in the fifth percentile. It was the examiner’s impression that previously
identified word retrieval deficits contributed to this low score. Poor early reading
and spelling skills were reflected in his performance on the Wechsler Individual
Achievement Test‐II (WIAT-II); scores from the Word Reading and Spelling
subtests fell at the tenth percentile (Table 26.2). Perhaps more importantly for
a child just completing kindergarten, Ricky could not complete any rhyming
activities and was unable to write sounds associated with select letters and letter
combinations.
Poor phonological processing was having a direct impact on Ricky’s develop-
ment of reading and spelling skills. Performance on the Comprehensive Test of
Phonological Processing (CTOPP) suggested mild to moderate deficits in phonemic
awareness, phonological memory, and rapid automatized naming (Table 26.3).
On the basis of test results and subjective review of writing samples, there was
no evidence of deficits in motor manipulation or integration of visual and motor
domains.
26 Mixed Bag: Tics, Compulsions, and More 269
Table 26.1 Intelligence – first evaluation

Spatial 114 82nd
General cognitive ability 109 73rd
Word definitions [51] 54th
Similarities [48] 42nd
Matrices [59] 62nd
Sequential and qualitative reasoning [53] 57th
Recall of designs [62] 88th
Pattern construction [56] 73rd
Recall of digits [45] 31st
Recall of objects
Immediate [51] 54th
Delayed [34] 5th
Speed of information processing [60] 54th
a
Table 26.2 Academic achievement – first evaluation

Wechsler Individual Achievement Test – Second Edition Score Percentile
Spelling 81 10th
Numerical operations 96 39th
Math reasoning 122 93rd
Table 26.3 Other cognitive functions – first evaluation

Phonological Awareness 79 8th
Phonological Memory 82 12th
Rapid Naming 82 12th
Ricky’s mother’s response to the behavior checklist resulted in a profile in which

all factors were elevated to the borderline range. Her response to the ADHD-
specific questionnaire showed no elevated concerns for ADHD symptoms. Ricky’s
teacher also completed rating scales, and reported no problem areas.
Initial Formulation and Recommendations
On the basis of test results, a preliminary diagnosis of a reading disorder (dyslex-

ia) was made. It was recommended that Ricky become involved in an intense and
systematic intervention to improve phonological awareness and sound and symbol
270 K.L. Grizzle
correspondence. Although the level of commitment required to develop education-

related skills outside the school setting can be excessive in some circumstances,
because this child attended a parochial school that did not have a reading specialist
or teachers who felt trained to teach reading effectively to a child at extreme risk for
dyslexia, the decision was made to offer this recommendation.
Ricky’s repetitive behaviors of licking his index fingers and wiping them under
his eyes were noted. Because of the relatively recent onset of these behaviors
together with the fact that the behaviors were having no functional impact on
him, the recommendation was made to monitor symptoms and return if they
worsened or began to interfere with daily functioning.
Second Test Results
Ricky was evaluated again 3½ years later. In the interim, he had received consider-
able intervention for reading and literacy in general. The private school he attended
had hired a learning specialist who worked regularly with him. On the basis of
discussion with Ricky and his parents and a review of the reading specialist’s
records, it appeared that the specialist used a code-based intervention to address
reading and spelling deficits. She worked with Ricky on average three times per
week for approximately 30 min each session. She completed testing at age 9 and
suggested that Ricky’s reading and spelling profile, ‘‘loosely fit a dysphonetic
pattern, although errors are not as striking as often seen.’’ As part of the evaluation,
she administered the CTOPP and reported the following composite scores: phono-
logical awareness 124, phonological memory 88, and rapid naming 100. In addition
to seeing the reading specialist, Ricky received reading interventions from a
reading specialty clinic at a local liberal arts college.
Ricky’s parents reported that his reading skills had shown dramatic improvement
since the initial testing. In fact, the school reading specialist felt that she no longer
needed to work with him. He was also no longer receiving educational services from
the community reading clinic. Ricky’s mother, however, expressed ongoing concern
about difficulties that he was having in the school curriculum. Although his grades
typically ranged from As to Cs, he continued to be easily frustrated, refused to engage
in independent reading, and demanded that a parent help him at all times with
homework. During the school day, accommodations were made because of the
identified learning disability: all tests were read to him; written portions of exams
were allowed to be dictated; teachers did not down-grade for poor spelling.
Updated intellectual testing was consistent with the initial test results. Nonverbal
reasoning skills were high average to superior, and verbal reasoning skills were
average (Table 26.4). Relative weaknesses were seen in auditory memory-related
tasks and psychomotor speed. Verbal memory functioning was also consistent with
previous test results. In addition to relatively weak auditory working memory
scores, Ricky performed poorly on all portions of the verbal learning subtests
(Table 26.5), suggesting poor encoding of discrete pieces of auditory information.
Table 26.4 Intelligence – second evaluation

Wechsler Intelligence Scale for Children – Fourth Edition Score Percentile
Similarities (10)
Vocabulary (11)
Comprehension (11)
Perceptual Reasoning 121 92nd
Block Design (16)
Working Memory 88 21st
Digit Span (6)
Coding (7)
Symbol Search (10)
An updated language evaluation completed by an SLP included administration of

the TAPS-3 (Table 26.5) and showed severely deficient memory span and working
memory and poor phonological blending, which was likely related to poor memory
span. Visual memory and narrative memory were intact.
Academic testing showed continued poor word decoding, low average word
reading, and moderately deficient spelling skills (Table 26.6). Of note was Ricky’s
ability to derive meaning from written text. Reading comprehension fell in the
second percentile, which contrasted with verbal reasoning skills in the 92nd per-
centile, narrative memory in approximately the 70th percentile, and average recep-
tive vocabulary. Ricky’s poor reading comprehension required that the entry level
be pushed back, thus not allowing the examiner to obtain a measure of reading
speed. Test results and behavioral observation suggest that poor reading compre-
hension reflected a number of factors: poor phonetic decoding, relatively weak
working memory skills, and limited metacognitive strategy application, including
self-directed learning.
Additional support for factors other than broad structural language processing
affecting reading comprehension was Ricky’s expressive writing. Conceptual
writing, including idea development and story formulation, was strong, as reflected
by his performance on the Test of Written Language-3 (TOWL-3). Writing
mechanics, specifically spelling and punctuation, had the greatest impact on the
readability of his written output.
Measures of phonological processing were inconsistent. Performance on the
CTOPP suggested above average phonemic awareness. However, using the Process
Assessment of the Learner (PAL), which employs a deletion task to evaluate
phonemic awareness, Ricky showed weak skills (<20th decile) at the syllable
and phoneme level. On the TAPS-3 he also showed poor phonological blend-
ing skills. Results suggested continued weak phonemic awareness. Efficient and
automatic recognition and retrieval skills as reflected by RAN tasks were adequate
272 K.L. Grizzle
Table 26.5 Other cognitive functions – second evaluation

Verbal memory 97 42nd
Story memory (12)
Story memory recall (11)
Story memory recognition (11)
Verbal learning (7)
Verbal learning recall (5)
Verbal learning recognition (6)
Visual memory 124 95th
Design memory (13)
Picture memory (15)
Finger windows (11)
Test of Auditory Processing Skills – Third Edition
Overall score 79 8th
Phonologic 94 34th
Memory 62 1st
Cohesion 93 32nd
Word discrimination (9)
Phonological segmentation (12)
Phonological blending (5)
Number memory
Forward (1)
Reverse (1)
Word memory (6)
Sentence memory (2)
Auditory comprehension (10)
Auditory reasoning (7)
Table 26.6 Academic achievement – second evaluation

Wechsler Individual Achievement Test – Second Edition
Word reading 89 23rd
Reading comprehension 69 2nd
Pseudoword decoding 82 12th
Numerical operations 107 68th
Spelling 73 3rd
Test of Written Language – Third Edition
Spontaneous writing 94 35th
Contextual conventions (7) 16th
Contextual language (9) 37th
Story construction (11) 63rd
across measures, though phonological memory continued to be relatively weak. In

addition to phonological deficits, Ricky showed poor orthographic coding as
reflected by his performance on the Receptive Coding (<10th decile) and Word
Choice (<10th decile) subtests from the PAL.
Second Formulation and Recommendations
Test results confirmed the previous preliminary diagnosis of Specific Reading

Disorder. Phonetic word decoding deficits continued to be affected by weak
phonological processing, including memory deficits, limited phonemic awareness,
and poor orthographic coding, which has been connected to poor development of
sight word automaticity in connected text and inefficient reading of irregular words
(Manis, Seidenberg, Doi, McBride-Chang, & Peterson, 1996).
The inconsistency in phonological processing scores obtained during the last set
of testing warrants discussion. Ricky clearly showed considerable gains in compo-
nents of phonological awareness, as reflected by his CTOPP score and the Phono-
logical Segmentation subtest from the TAPS-3. In contrast, phonological memory
continued to be problematic, as reflected by all measures. This suggested that there
was a strong memory span component to Ricky’s poor phonological processing that
was directly impacting word decoding skills. In fact, broader active working
memory deficits were likely a contributing factor (with poor phonological decod-
ing) to Ricky’s poor reading comprehension.
During the second round of testing, Ricky showed pronounced eye blinking,
sniffing, and throat clearing. These behaviors were exacerbated during times of
stress, such as when he was asked to engage in any task that required reading. His
parents made no mention of tics during the follow-up interview; however, upon
discussion following testing, both parents acknowledged a gradual worsening of
motor and vocal tics, both of which had been in place for approximately 18 months.
It was recommended that Ricky return to receiving reading instruction. In
addition to continued development of phonetic decoding skills, which should be
the focus of word reading instruction at this point, it was recommended that
phonemic awareness and orthographic coding not be ignored. Recommendations
were also made for enhancing reading fluency skills through the use of repeated
reading, a rapid word recognition chart, and choral reading. Although reading
comprehension was felt to be negatively impacted by decoding and memory
deficits, metacognitive strategies for increasing Ricky’s independent reading and
learning were offered. Referrals were made to neurology and a psychologist
specializing in treatment of tic disorders.
Three months after the second evaluation was completed, Ricky’s father
reported that Ricky was having difficulty getting into vehicles. Each time he entered
a vehicle, he had to make sure the door was shut by closing and opening the door
exactly three times. This behavior eventually spread to all doors he passed through.
Ricky also refused to remove plastic bracelets he received from swimming pools,
leaving them on for a month or more. When either parent eventually insisted to
remove the bracelet, Ricky became extremely agitated and insisted that the bracelet
not be thrown out. They discovered that he had saved multiple bracelets and ticket
stubs from various events. Both parents acknowledged that when their son was at
the other’s house, it was not unusual for them to periodically go through his hoard
274 K.L. Grizzle
of belongings and throw items out that they did not think he would miss because
they felt it would be too difficult to remove them when he was present.
A diagnosis of Tourette’s syndrome (TS) with Obsessive‐Compulsive (OC)
features was added to Ricky’s clinical picture. The decision was made to limit the
number of health care providers working with Ricky. His medical care was trans-
ferred to a pediatric psychiatrist, and his behavioral therapies were provided by a
single provider at the same center as the psychiatrist. The pediatric psychiatrist
initiated sertraline, which at 25 mg addressed the OC features. Guanfacine was
eventually added and titrated up to 6 mg per day with no added benefit for tic
reduction. Behavioral therapy, including cognitive-behavioral treatment (CBT)
using an exposure and response prevention protocol was implemented. Medication
and CBT provided effective control of OC symptoms, but Ricky was becoming
resistant to ongoing treatment, including minimizing the presence and effect tics
were having on him. The decision was made to slow down the treatment process
with hopes that a break might result in Ricky’s renewed motivation to address tics.
Consistent with known sequelae of Tourette’s syndrome (Hoekstra, Steenhuis,
Kallenberg, & Minderaa, 2004; Silva, Munoz, Barickman, & Friedhoff, 1995), the
severity of Ricky’s tics varied on the basis of environmental stressors. Unfortunately,
in his life there were multiple stressors. Homework that required any type of reading
or writing consistently resulted in excessive tics, to the point of homework taking 2–
3 hours to complete. Tics were most pronounced when he was with his father. Ricky
was his only son, and his father acknowledged feeling responsible for genetically
transmitting anxiety and reading problems to him. He went to considerable lengths to
minimize the impact of learning and psychiatric difficulties on Ricky, including
asking teachers to allow him to skip homework on nights he had athletic activities or
appointments, videotaping his tics, and making multiple weekly phone calls to
mental health providers with updates on tics and OC features.
After 8–10 weeks without psychotherapy, Ricky’s mother called, asking that he
reenter treatment. She and his father were returning to court, each seeking sole
custody of Ricky. Despite periodic lapses from both parents in their communication
with Ricky about the court hearing, Ricky was somewhat sheltered during this
process. Placement was eventually changed from Ricky splitting time 50/50 be-
tween his parents to a 70/30 split, which produced less disruption but allowed
continued, consistent contact and involvement with both parents. Change in place-
ment was to take place approximately 2 weeks before school started, which meant
he had an entire summer with the extant placement.
During the court hearing and the 4 weeks that followed, there was no apparent
exacerbation of tics. Within 2 weeks after the court hearing, school was dismissed
for the summer, and Ricky went on a 10-day vacation with his mother and then a
2-week vacation with his father. Both parents reported that Ricky was nearly tic-
free during the vacations. After returning home, Ricky developed an intense,
complex tic pattern that included popping his right shoulder, rubbing his eyes,
sniffing, and a hard, nonproductive cough. He went on a weekend camping trip with
his father and was unable to complete a short hike, having to stop regularly and
engage in the complex tic pattern.
Upon returning to treatment Ricky asked, for the first time, what he could do to
stop the tics. A habit reversal training (HRT) protocol was initiated consisting of
five components: awareness training, competing response training, contingency
management, relaxation training, and generalization training.
Update
Ricky is currently involved in the behavioral treatment of his tics. An interesting

clinical observation is that his tics appear to have taken on a rather pronounced
functional component. With the onset of severe tics, Ricky’s parents have been
united, for the first time, in the need to support their son in his attempts to manage this
psychiatric condition more effectively. Although this is felt to have a potentially
beneficial effect on the treatment process, the clear existence of symptoms that
nominally had the potential of decreasing conflict between caregivers could also
have the unintended consequence of maintaining symptomology. Care must be given
to monitor and directly address this dynamic if it occurs. This will most likely be
accomplished in a direct manner by pointing out the phenomenon to Ricky’s parents
and working with them to maintain an amicable relationship if for no other reason
than the health of their son.
Tourette’s Syndrome (TS) Presence of motor and vocal tics that occur every day or
nearly every day for greater than one year and cause distress or impairment in
functioning.
Obsessive–Compulsive Disorder (OCD) Recurrent obsessions or compulsions that
cause distress or interfere with daily routine. Unlike adults, children need not be
aware that the symptoms are unreasonable for the diagnosis to be made.
Reading Disorder A learning disability that is characterized by unexpected reading
accuracy or comprehension that is considerably weaker than other cognitive skills
and below grade level, and occurs despite effective reading instruction. Dyslexia,
the most common type of reading disorder, includes difficulties with accurate and/
or fluent word recognition, and poor spelling and word decoding abilities.
TS, OCD, and Learning OCD is a common comorbidity for individuals with TS,
occurring even more frequently among individuals with severe TS (Coffey et al.,
2000). There has been less research recently on the learning patterns associated
with TS. Although research to date suggests that as a group, individuals with TS are
276 K.L. Grizzle
at greater risk to have a learning disability of some type relative to the population at
large, evidence is mixed on the type of learning profile commonly found among TS
children. There is support that learning challenges are exacerbated by Attention
Deficit/Hyperactivity Disorder (Denckla, 2006), another common comorbidity of
TS. In Ricky’s case, there was a strong paternal and maternal family history for
dyslexia, which alone places him at much greater risk for reading problems. His
father also shows obsessive–compulsive behaviors but does not warrant a diagnosis
of OCD or OCPD.
References
Blachman, B. A., Ball, E. W., Black, R. B., & Tangel, D. M. (2000). Road to the code:
A phonological awareness program for young children. Paul H. Brookes: Baltimore.
Coffey, B. J., Biederman, J., Smoller, J. W., Geller, D. A., Sarin, P., Schwartz, S., & Kim, G. S.
(2000). Anxiety disorders and tic severity in juveniles with Tourette’s disorder. Journal of the
American Academy of Child and Adolescent Psychiatry, 39(5), 562–568.
Dawson, P., & Guare, R. (2004). Executive skills in children and adolescents: A practical guide to
assessment and intervention. Guilford Press: New York.
Denckla, M. B. (2006). Attention deficit hyperactivity disorder: The childhood co-morbidity that
most influences the disability burden of Tourette syndrome. In: J.T. Walkup, J.W. Mink, & P.J.
Hollenbeck (Eds.), Advances in neurology: Volume 99: Tourette syndrome. Lippincott,
Williams & Wilkins: Philadelphia.
Goodman, W. K., Storch, E. A., Geffken, G. R., & Murphy, T. K. (2006). Obsessive-compulsive
disorder in Tourette syndrome. Journal of Child Neurology, 21(8), 704–714.
Hoekstra, P. J., Steenhuis, M. P., Kallenberg, C. G. M., & Minderaa, R. B (2004). Association
of small life events with self reports of tic severity in pediatric and adult tic disorder patients:
A prospective longitudinal study. Journal of Clinical Psychiatry, 65, 426–431.
Manis, F. R., Seidenberg, M. S., Doi, L. M., McBride-Chang, C., & Peterson, A. (1996). On the
bases of two subtypes of developmental dyslexia. Cognition, 58, 157–195.
March, J. S., & Mulle, K. (1998). OCD in children and adolescents: A cognitive-behavioral
treatment manual. Guilford Press, New York.
Minskoff, E., & Allsopp, D. (2003). Academic success strategies for adolescents with learning
disabilities and ADHD. Paul H. Brookes: Baltimore.
Silva, R. R., Munoz, D. M., Barickman, J., & Friedhoff, A. J. (1995). Environmental factors and
related fluctuation of symptoms in children and adolescents with Tourette’s disorder. Journal
of Child Psychology and Psychiatry, 36, 305–312.
Walkup, J. T., Mink, J. W., & Hollenbeck, P. J. (2006). Advances in neurology: Volume 99:
Tourette syndrome. Lippincott, Williams & Wilkins: Philadelphia.
Fitzgibbons, L., & Pedrick, C. (2003). Helping your child with OCD. New Harbinger Publications,
Oakland.
I Have Tourette’s, But Tourette’s Doesn’t Have Me. DVD available through Tourette Syndrome
Association, http://www.tsa-usa.org/
Learning Disabilities Association, 4156 Library Road, Pittsburgh, PA 15234, 412–341–1515,

http://www.ldaamerica.org
The Obsessive-Compulsive Foundation, 676 State St., New Haven, CT 06511, 203–401–2070,
http://www.ocfoundation.org
Tourette Syndrome Association, Inc., 4240 Bell Blvd, Suite 205, Bayside, NY 11361–2820, 718–
224–2999, www.tsa-usa.org
Road to the Code: A Phonological Awareness Program for Young Children (Blachman, Ball,
Black, & Tangel, 2000).
Masonic Learning Center, http://www.childrenslearningcenters.org/. A multi-sensory code-based
intervention. Children involved in this Orton-Gillingham-based program are expected to attend
hour long sessions twice a week for 2 years. Services are offered without charge.
Part III
Things that Go Bump in the Night:
Interesting Questions and
Controversies for Our Field
Part III illustrates several interdisciplinary questions, divergent points of view, and
practical questions regarding the utilization of services with limited availability, such
as pediatric neuropsychological evaluations, among the overall expenditure of health
care resources. Exciting and challenging ideas come onto the table in any field as
vibrant as pediatric neuropsychology, and it is important to openly consider new
developments and potential contributions from other related fields. Gradual accumu-
lation of collaborative interdisciplinary evidence is needed more than passionate
arguments. As editors, we tend to be conservative in considering these issues,
but we also seek forums such as the present book to spark valuable discussion
among disciplines. Case presentations provide an important avenue through which
to examine these ideas, although we acknowledge that systematic research is also
needed to test hypotheses and build support for the construct validity of ideas from
other fields.
One of the most salient of such issues is the debate among clinicians about
the validity of theories emphasizing basic sensory processing in accounting for
children’s problems with learning, behavior, and emotions. On one hand, the
importance of primary and secondary sensory processing in neural circuits has
been argued persuasively throughout the history of clinical neuropsychology
(Lurija, 1973). On the other hand, advances in basic neuroscience and cognitive
neuroscience research have not always been integrated fully into clinical
approaches promoting such arguments.
The debate over the nature of the fundamental processing deficits that were
presumed to be addressed by the computer-based intervention Fast ForWord (Tallal
et al., 1996; Mody et al., 1997) illustrates the dilemma of marketing treatments
when replication of initially promising outcome results is not yet available.
In addition, many interventions that are now widely disseminated in the fields of
education and rehabilitation have not received ample research on specific treatment
effects. In particular, it is difficult in clinical research to control for non-specific
treatment effects such as hope on the part of the adults involved, general
280 Things that Go Bump in the Night: Interesting Questions and Controversies for Our Field
encouragement and support delivered to children, and time spent with profes-
sionals. Unfortunately, the exasperation that some pediatric neuropsychologists
feel about how some treatments can be promoted without thorough consideration
of alternative explanations (such as the developmental disorders highlighted in
Part II) or the specificity of treatment effects can sometimes degenerate into
sarcasm or flippant jokes. We wish to examine these issues from a higher ground
at the level of individual cases here.
Part III begins with a pair of chapters each on sensory processing and auditory
processing, to illustrate and further stimulate the discussion among the various
disciplines related to pediatric neuropsychology. We have carefully chosen con-
tributions to this section in light of their attention to issues of psychometric
methodology, the range of normal functioning, construct validity, and discriminant
validity in relation to other more commonly recognized constructs and disorders in
clinical neuropsychology, rather than just relying on clinical or anecdotal impres-
sions. As editors, we neither critique by absence nor uncritically endorse these
ideas; rather, we include them in the discussion. In addition, we do not intend to
promote new diagnoses or disorders, per se. In our evolving field, divergent ideas
need to be considered with sufficient open-mindedness to allow theoretical growth
and interdisciplinary collaboration, while at the same time we promote methodo-
logical rigor and evidence-based intervention practice.
The last two chapters illustrate questions about the role of neuropsychological
testing in overall clinical evaluations of children’s learning, behavior, and emo-
tional problems. One involves a case with clear neuropathology; the other, psy-
chopathology. It is important to consider the place of ‘‘negative’’ or normal
neuropsychological findings in teasing out ambiguous clinical presentations. We
hope these final cases illustrate our clinical responsibility to avoid excessive testing
and highlight that tests should not always be given just because they are available
and might tell us something.
References
Lurija, A. R. (1973). The working brain. New York: Basic Books.

Mody, M., Studdert-Kennedy, M., & Brady, S. (1997). Speech perception deficits in poor readers:
Auditory processing or phonological coding? Journal of Experimental Child Psychology, 64,
199–231.
Tallal, P., Miller, S. L., Bedi, G., Byma, G., Wang, X., Nagarajan, S. S., Schreiner, C., Jenkins, W.,
& Merzenich, M. M. (1996). Language comprehension in language-learning impaired children
improved with acoustically modified speech. Science, 271, 81–84.
Chapter 27
A ‘‘Sensational’’ Way to Understand
and Serve Children: Illustration of a Sensory
Processing Model
Winnie Dunn
Introduction
A growing body of literature suggests that the way people respond to sensory
experiences in their everyday lives can both be characterized and serve as a useful
assessment and intervention planning template (Dunn, 2001, 2007a, b; Dunn,
Myles, & Orr, 2002; Myles et al., 2004; Rogers, Hepburn, & Wehner, 2003).
Receiving and processing sensation is a core feature of brain activity, and therefore
has the potential to influence many areas of performance and behavior. Understanding
the patterns of sensory processing identified from research, and how these patterns
affect children’s behavior, can be extremely useful for understanding complex
situations with families and schools. Sensory processing knowledge broadens our
ability to consider what might be influencing a child’s behavior and therefore
provides insights about effective intervention possibilities. As this may be a new
area of consideration for readers, we will review the basic concepts before presenting
the case.
Historical–Theoretical Perspectives
Approximately 50 years ago, Dr. A. Jean Ayres proposed a theoretical model

for applying sound neuroscience principles to interventions for some children
with ‘‘minimal brain dysfunction’’ (Ayres, 1979). She discussed the relationships
among sensory input, brain activity, and the production of a response as important
factors to understand when designing effective interventions for children. Because
her focus was on organizing sensory information for use, she used the term sensory
integration, a term used in neuroscience to reflect the interaction among the sensory
inputs to create meaning in the brain, which in turn could drive the production
of a response. The phrase ‘‘sensory integration’’ has come to stand for both the

282 W. Dunn
neuroscience function and the applied science that Ayres proposed and tested in her
extensive body of research (e.g., Ayres, 1989; Ayres & Tickle, 1980).
As was consistent with the thinking of the decades of her work, children were
considered to have ‘‘dysfunction’’ when their sensory integrative mechanisms
seemed unable to support them in producing adaptive responses within their life
activities. Rather, the children would react too intensely or not enough for the needs
of particular situations (which would be termed ‘‘dysfunctional’’ behavior patterns).
Sensory integration assessment identified children’s strengths and weaknesses
in receiving and understanding various sensory inputs and linking them to poor
adaptive response patterns. Sensory integration treatment focused on improving
sensory inputs and adaptive responses (Fisher, Murray, & Bundy, 1991).
Many authors have contributed to the sensory integration body of research
(e.g., Case-Smith & Bryan, 1999; Cohn & Cermak, 1998; Coster, Tickle-Degnen,
& Armenta, 1995; Dunkerley, Tickle-Degnen, & Coster, 1997; Fallon, Mauer,
& Neukirch, 1994; Lai, Parham, & Johnson-Ecker, 1999; Schaaf & Anzalone,
2001; Smith-Roley, Blanche, & Schaaf, 2001; Tickle-Degnen & Coster, 1995),
advancing the ideas over the last decades. In the current environment, just as during
Ayres’ formative work, there are contextual issues as well as additional knowledge
to consider when studying these constructs and when applying them to current
practice demands. For example, there is a growing awareness of the importance of
everyday contexts as critical to a child’s ability to generalize learning and use it
when needed (Dunst & Bruder, 2002; Dunst et al., 2001; Dunst, Hamby, Trivette,
Raab, & Bruder, 2000, 2002; Dunst, Trivette, & Cross, 2002). Currently available
knowledge and new demands in practice settings press researchers and practitioners
forward to consider concepts both more specifically and more broadly.
Contemporary Conceptual Perspectives
With solid foundations of neuroscience and the application of neuroscience to research

and practice in sensory integration literature, new ideas could emerge to advance these
ideas. Dunn (1997) proposed a conceptual model about sensory processing, which
reflects the interaction of one’s neurological thresholds for responding and self-
regulation strategies. The model suggests four basic patterns of sensory processing:
seeking, avoiding, sensitivity, and registration, each of which has a unique thresh-
old and self-regulation combination (Table 27.1 illustrates these relationships).
Table 27.1 Dunn’s model of sensory processing

Self regulation strategies/behavioral responses
Neurological thresholds Passive Active
High thresholds Registration Seeking
Low thresholds Sensitivity Avoiding
Adapted with permission from Dunn (1997).
27 A ‘‘Sensational’’ Way to Understand and Serve Children 283
Dunn’s model evolved from the findings in a national sample of children without
disabilities (Brown, Tollefson, Dunn, Cromwell, & Filion, 2001; Dunn, 1999, 2002,
2006, 2007a,b) using the Sensory Profile measure, a nationally standardized
parent reporting questionnaire indicating the frequency a child reacts to the sensory
events in everyday life represented in the items. Dunn and colleagues (Brown et al.,
2001; Dunn, 1999, 2002, 2006, 2007a, b) used the model to test infants, adoles-
cents, and adults, validating that the constructs in Dunn’s model seem to exist
across the life span. Table 27.2 provides examples of items from the Sensory Profile
and the Sensory Profile School Companion (used in this case).
A neurological threshold is the point around which the nervous system is likely
to notice and respond to stimuli; high thresholds require a lot of stimuli, while low
thresholds require very little input. The self-regulation continuum reflects a per-
son’s tendency to be active or passive in reacting; when active, a person engages in
behavior to control sensory input and when passive, a person allows input to occur
and then responds. When these continua interact, four patterns emerge (i.e., seek-
ing, avoiding, sensitivity, registration). These patterns are present in everyone; they
reflect how human beings manage sensory input, which occurs throughout the day.
So these patterns do not represent a diagnosis or dysfunction; they merely describe
the way the person tends to take in and respond to sensory events. The challenges
with participation arise when a person’s sensory processing patterns begin to
interfere with activities in everyday life.
Seeking patterns reflect high neurological thresholds and an active self-regula-
tion strategy; these persons enjoy sensory input and engage in behaviors to get more
input so that they can meet their sensory thresholds. Seeking is helpful because the
person is interested in detecting what is going on; this can lead to heightened
awareness and even idea generation. Seeking can be challenging when all that
searching for new input distracts the person from the tasks at hand, leading to
diminished productivity.
Avoiding patterns reflect low neurological thresholds and an active self-regulation
strategy; these persons are easily overwhelmed by sensory input so they actively retreat
Table 27.2 Examples of items from the Sensory Profile measures

Sensory Profile (completed by Sensory Profile School Companion
parents) (completed by teacher)
Seeking Takes excessive risks during play Watches other students when they move
(movement) around the room (visual)
Avoiding Avoids getting ‘‘messy’’ such as in Holds hands over ears to protect them from
paste, sand, finger paint, glue, sound (auditory)
tape (touch)
Sensitivity Will only eat certain tastes (oral) Is fidgety or disruptive when standing in
line or close to other people (touch)
Registration Poor endurance, tires easily (body Is clumsy and awkward in movements (e.g.,
position) runs into desks and furniture when
moving about) (movement)
284 W. Dunn
from experiences that are intense or unfamiliar. Avoiding is helpful because the
person is skilled at finding isolated areas for completing work (if allowed to do so)
and so can complete tasks in an effective manner. Avoiding can be challenging
because learning and living environments are unpredictable, which can be over-
whelming very quickly.
Sensitivity patterns reflect low neurological thresholds with a passive self-
regulation strategy; these persons are also easily bothered by stimuli and are
more likely to experience the sensations and get upset rather than retreating.
Sensitivity is helpful because the person’s high detection and need for precision
can create very nice work products. Sensitivity can be challenging because the
need for precision can interfere with deadlines and tasks requiring an overview
perspective.
Registration patterns reflect high thresholds and a passive self-regulation strat-
egy; these persons miss a lot of sensory input because of high thresholds, and may
seem oblivious because they fail to detect what others notice. Registration is helpful
because the person is not distracted by environmental stimuli and so can concentrate
on a task. Registration can be challenging because the person can miss directions or
other cues indicating how something needs to be done.
Research has indicated that children with certain disorders have a significantly
higher frequency of behaviors related to these sensory processing patterns
when compared with peers without disabilities, including children with autism,
Asperger’s disorder, Attention Deficit Hyperactivity Disorder, and Learning
Disabilities (Dove & Dunn, submitted; Dunn et al., 2002; Ermer & Dunn, 1998;
Kientz & Dunn, 1997; Myles et al., 2004; Rogers et al., 2003; Tomchek & Dunn,
2007; Watling, Dietz, & White, 2001). Researchers have also hypothesized that
there is a link between sensory processing patterns and successful participation
(Dunn, 2005, 2007a, b; Myles et al., 2004; Rogers et al., 2003).
Several studies have also demonstrated a link between the patterns of sensory
processing in Dunn’s model and nervous system activity. Using skin conductance,
Brown, Cromwell, Filion, Dunn, and Tollefson (2002) showed significantly differ-
ent patterns of responsivity and habituation in young adults with distinct patterns of
sensory processing from the Adolescent Adult Sensory Profile. Researchers
obtained a similar result with children by recording skin conductance and Short
Sensory Profile results; there were significant differences on the SSP in children
with typical and abnormal skin conductance responses (McIntosh, Miller, Shyu, &
Hagerman, 1999; McIntosh, Miller, Shyu, & Dunn, 1999; Schaaf, Miller, Sewell, &
O’Keefe, 2003).
Links have also been hypothesized between the patterns of sensory processing
in Dunn’s model and patterns of temperament (Dunn, 2001). Using Rothbart’s
temperament scales, Daniels (2003) showed significant relationships between
sensation seeking and surgency and between low neurological threshold response
patterns and negative affectivity. Horsey (2003) and Koenig (2003) also
report that there are moderate relationships between temperament and sensory
processing. Perhaps the behaviors we associate with various temperament patterns
are a reflection of how the nervous system is processing sensory information

(Dunn, 2001).
Sensory Profile Measures
There are five different Sensory Profile measures that have been used to study these
concepts, to validate patterns in disability groups, and to guide practice decision
making. Each measure has been nationally standardized, has reported validity and
reliability (within the manuals and in the literature), and discriminates among
disability groups who have a high rate of differences in sensory processing when
compared with peers. They are parent (for infants, toddlers, and children) or self-
reporting (for adolescents and adults) measures. They use a 5-point Likert scale
(almost always, nearly 100% of the time; frequently, about 75% of the time;
occasionally, about 50% of the time; seldom, about 25% of the time; and almost
never, 0% of the time) to report the frequency of responding to sensory events in
everyday life in the manner described in each item.
Infant Toddler Sensory Profile (birth to 3 years)
Sensory Profile (3–10 years) and Sensory Profile Supplement
Short Sensory Profile (3–10 years) (for screening and research protocols)
Sensory Profile School Companion (3–11 years)
Adolescent Adult Sensory Profile (11 years to 90 þ years)
It has been traditional to accept direct observation of children’s behavior as the
most accurate form of reporting. However, some behaviors are difficult or impossi-
ble to observe directly in constructed, contrived, or time-restrained situations,
including how a child might act within a particular setting and in front of a particular
observer (De Los Reyes & Kazdin, 2005). Some scholars suggest that because
children’s behaviors vary across contexts, familiarity and roles (including profes-
sional backgrounds) can affect children’s behaviors, including making it impossible
to observe some behaviors (Kohen, Brooks-Gunn, McCormick, & Graber, 1997;
DuPaul, 2003). It is important to obtain multifaceted information. To minimize the
effect of context, Kraemer et al. (2003) recommend using informants across contexts
and with different roles. The Sensory Profile measures are informant reporting
measures that take advantage of a parent’s or teacher’s familiarity with a child
across time. Many of the behaviors that children exhibit indicating their patterns of
sensory processing emerge within daily life and so would be difficult to trigger in a
direct observation situation. Dunn (2007a,b) reports convergent and discriminant
validity between the Sensory Profile from the parents and the Sensory Profile School
Companion from the teacher report, suggesting that behaviors in context are impor-
tant to understand. In practice, occupational therapists combine standardized testing
with skilled observation and interviews to create hypotheses for intervention
planning. When used in this way, the Sensory Profile measures offer external
validation for the hypotheses being developed and tested.
286 W. Dunn
History and Reason for Referral
Paul was a 6-year-old entering first grade at his neighborhood school. He lived with
his parents and 4-year-old sister. Paul and his family received early childhood
services during his preschool years, and he was diagnosed with Asperger’s Disorder
after preschool as he entered kindergarten. During his kindergarten year, Paul’s
parents placed him in a small private school; his teacher designed a very tight and
individual structure for the half day experience, and Paul had a good year at school.
His day care situation was more variable, with some good and some bad days.
Paul’s parents enrolled him in the neighborhood public school for first grade. He
started having multiple outbursts during the day, and his parents had to pick him up
several times before the day was over. Paul’s parents and teacher wanted him to be
successful in regular education, but they were frustrated about knowing what to do.
Paul’s teacher talked to his parents, and they agreed that the teacher would in-
volve the Planning Team in her building to help with some creative problem solving
(school districts have different names for these teams; they consist of other tea-
chers, an administrator, and usually a special education professional; their task is to
support the classroom teacher by identifying alternatives for instruction and behav-
ior management). They implemented some of the strategies the school uses for
discipline, but these were not successful with Paul. For example, when Paul became
agitated, he left his seat and roamed around the room. He got increasingly more
aggressive and eventually destroyed materials and supplies in the classroom.
He also screamed at the teacher and other children that they were not following
the rules. When other children were disruptive, the teacher sent them to a quiet
space set aside for calming down and talked calmly to them about what they needed
to think about while sitting there. When the teacher tried to get Paul to go to the
quiet space, he became more agitated and louder, and the teacher was afraid he
might harm someone. The Planning Team, teacher, and Paul’s parents decided they
wanted to involve special education services to provide additional supports for the
classroom. The formal process proceeded, and the school psychologist, behavior
specialist, and occupational therapist became involved in the process.
Test Results
The school psychologist administered the Wechsler Intelligence Scales for Children –
Fourth Edition and the Woodcock Johnson Psychoeducational Test Battery. The
findings from these measures are summarized in Tables 27.3 and 27.4. She reported
that Paul had average to above average intelligence, with somewhat stronger verbal
skills. On the psychoeducational testing, Paul was stronger in math (above average
expectations) than reading and writing (average expectations). This testing
indicated that Paul was capable of being a successful student.
The behavior specialist conducted several skilled observations to record Paul’s
classroom behaviors, look for antecedents to his outbursts, and note what was going

Verbal comprehension index 115 84th
Perceptual reasoning index 108 70th
Working memory index 110 75th
Processing speed index 92 30th
Full scale IQ 106 66th
a

Woodcock Johnson Tests of Achievement – Third Edition, Form A Score Percentile
Letter–word 111 77th
Spelling 110 75th
on when Paul was doing well. He also interviewed Paul’s teacher to gain her
insights about the situation. He reported that Paul was more successful when
there was a very specific task to complete, when the room was quiet, and when
Paul was out of the highest activity areas of the classroom. Changes in routines,
multiple activities, and being in proximity to others seemed to be the triggers for his
outbursts.
The occupational therapist’s primary concern along with her teammates was
Paul’s successful participation as a student. She wanted to investigate what factors
might be contributing to or interfering with Paul’s ability to manage every day. In
reviewing the psychologist and behavior specialist evaluations, she noted that Paul
was capable of participating in first grade, so basic cognitive concerns could be
ruled out. The behavior specialist brought up some issues she wanted to pursue
further related to his ability to manage in particular situations. She knew from the
literature that children like Paul who have Asperger’s Disorder were likely to have
significantly different sensory processing patterns from peers, and this difference in
experiencing the world could be contributing to his outbursts in the classroom
(Dunn, 2005; Dunn et al., 2002; Myles et al., 2004). She decided to evaluate using
skilled observation and interviews with Paul’s teacher and parents to gather the
necessary information. Table 27.5 summarizes some of the findings from these
measures.
Skilled observation and interviews revealed that Paul seemed to get overloaded
very quickly with sounds in the environment. Whenever the teacher made transitions
288 W. Dunn
in activities, the students made more noise, and this seemed to set off Paul. He
also had a difficult time when the class would get in line and sit on the floor
together, and in the lunch room. The therapist observed that these were times
when Paul was much more likely to get bumped by peers or jostled as things
happened around him. He did better during structured classroom time in chairs with
teacher direction and a specific task to accomplish. Paul’s parents reported that they
had a very orderly structure at home for him, including his own places to play; they
acknowledged that they organized this way out of their need to keep him calm
at home.
The findings verified that Paul had sensory processing patterns that were signifi-
cantly different from his peers. As can be seen on Table 27.5, his parent and teacher
reports were similar, but not exactly the same. This is because the measures are an
assessment of the child in context; therefore, scores reflect the interaction between
the child’s patterns of responding and the demands of that context. For example,
Paul’s parents reported ‘‘typical’’ responses in sensitivity, while his teacher
reported ‘‘more than others.’’ The classroom environment was much more active
and variable than home for Paul; it was likely that he encountered his sensitivity to
sounds and touch more frequently at school than at home. They both agreed that he
was an avoider (he had very low thresholds and actively tried to get away from
stimuli that bothered him), with a ‘‘much more than others’’ rating. It was quieter at
home, but his parents still reported that Paul noticed auditory stimuli more than
other children; the teacher noted that he detected sounds more than 98% of his
peers. They both also noted that he responded to touch more than other children. His
parents commented how hard it had been to bathe and dress him, although they had
figured out what he would wear and they no longer forced the issue. The teacher
structured the classroom so Paul was not close to the other children during large
parts of the day, and this reduced the impact of touch sensitivities on his behavior.
Table 27.5 Summary of the Sensory Profile and Sensory Profile School Companion findings
Selected scores from Sensory Profile findings Sensory Profile School Companion
those available (from parents) findings (from teacher)
Sensory processing patterns
Seeking Typical Typical
Avoiding Much more than others Much more than others
Sensitivity Typical More than others
Registration More than others Much more than others
Sensory systems
Auditory Much more than others Much more than others
Visual Typical Typical
Vestibular Typical More than others
Touch More than others More than others
Multisensory Typical Not applicable
Oral More than others Not applicable
Both Paul’s parents and the teacher reported that his behavioral responses to
sensory stimuli were significantly more frequent than typical peers.
The team met to discuss the findings and preliminary impressions. Everyone was
happy that Paul’s cognitive and educational abilities indicated he was capable of
being successful at school. It was a particular relief to his parents, who were worried
that he might be in over his head. The team focused on how to tap into Paul’s
cognitive and educational abilities by examining other factors that might be inter-
fering with his participation. The behavior specialist and occupational therapist
both reported helpful data about Paul’s behaviors within the classroom. For example,
they agreed that he had more challenges during transition times. The behavior
specialist hypothesized that Paul needed clear contingencies during these times.
The occupational therapist hypothesized that Paul was overwhelmed during transi-
tions because these situations provide high intensity auditory and touch opportu-
nities, which testing revealed were difficult inputs for Paul. His parents talked about
challenging situations at home, like family gatherings, and agreed that these active
times were hard for Paul.
The team worked on a plan that combined creating contingencies and structure
and also honored Paul’s need to limit sound and touch input during the school day.
They worked with the teacher’s classroom schedule to identify ways to create
routines, anticipatory cues, and positive feedback. The occupational therapist spent
time with the teacher in the classroom to identify ways to make sure Paul’s
sensation avoiding tendencies did not interfere with his learning. With the teacher
understanding that Paul had very low thresholds for touch and sounds, they
discussed ways to reduce these opportunities throughout the day so that Paul
could continue to participate successfully. For example, they decided to send
Paul ahead of others when they went to the library so he did not hear the noise of
the class moving down the hall and did not get bumped by other children. When
they went to lunch and recess, Paul could stand behind the classroom door, holding
it open for the other children. He could see the children through the window, but the
door protected him from bumping and dampened the sounds as well.
The occupational therapist also explained Paul’s significantly different registra-
tion score to the team. In addition to being overwhelmed easily, Paul missed other
important sensory inputs throughout the day. The team did not understand how Paul
could both be overwhelmed and miss things. The occupational therapist explained
that children like Paul have a very narrow range of noticing and tolerating stimuli.
He did not notice, and then when the sensory input became bigger, he easily shut
down (by either withdrawing or acting out to get away from the aversive stimuli).
This was a dilemma for Paul’s parents and teacher because it left a very narrow
range for paying attention and learning. His teacher and parents acknowledged that
although his outbursts are the most difficult to deal with, they had all seen him be
290 W. Dunn
oblivious sometimes too (e.g., they would call his name numerous times to get his
attention). The occupational therapist volunteered to spend more time observing to
identify the range of stimulus intensity that was just right to keep Paul’s attention
and not overwhelm him.
The teacher wondered about the vestibular score. This score represented Paul’s
ability to respond to movement stimuli; his parents said he was just like other
children, while the teacher scored his responses in the ‘‘more than others’’ range.
The occupational therapist explained that Paul’s clumsiness when moving about the
school, like running into desks and knocking off supplies, were everyday behaviors
that illustrated his challenge with responding to movement. On the basis of the
teacher’s responses, he seemed to miss movement cues and so moved in a less
coordinated way than would be expected of a child of his age. The behavior
specialist said that his outbursts could be more disruptive because of this clumsi-
ness, rather than anger or rage. They all agreed that understanding his sensory
processing patterns helped them understand the nature of his behaviors a different
way and would be useful in their planning.
All of the additional explanations about Paul’s behaviors were helpful to his
parents too. Without understanding the concepts, they had been making some of the
adjustments in their family life just to get by with Paul. For example, they gave Paul
a portable media player that he could use at family gatherings. He had been picky
about clothing, so they had identified the socks, underwear, and clothing that he
tolerated, and much of it was form fitting, without seams or tight elastic. They off-
ered to provide rewards at home for good days at school, and the behavior specialist
agreed to follow up and help them with a plan.
Additional Issues
It is critical for teams to consider multiple explanations for the behaviors experienced
in children like Paul. He could easily have been considered defiant or labeled as a
child with a conduct or oppositional disorder. Additionally, strictly behavioral
approaches to intervention were not likely to be successful since Paul also needed
environmental, instructional, and contextual adjustments that were respectful of his
sensory processing needs. As Paul had intact cognitive abilities, the team applied
cognitive-behavioral strategies to help him understand his own needs in addition to
providing integrated behavioral and sensory processing strategies throughout the
school day. For example, the teacher and occupational therapist identified antece-
dents to his outbursts (e.g., transition times beginning) and taught Paul to get up and
complete a task for the teacher during this time to take his focus away from the
sounds and get him away from the children moving about. Giving Paul awareness
increased his capacity to manage other situations.
Box 27.1 Specific Recommendations for Paul, His Teacher, and His Parents
1. Managing Paul’s Avoiding Pattern (particularly related to sound and touch)

▪ Create a cue between Paul and the teacher to mark the beginning of transitions so Paul
can complete a task during transitions (e.g., erase the board, get books to hand out,
sharpen pencils) and rejoin the class when it gets settled.
▪ Place Paul’s desk in a location out of traffic so he does not get bumped during the day.
▪ Let Paul wear earphones during seatwork.
▪ Teach Paul to ask to go to the study area or library when he begins to get overwhelmed
by the activity in the room.
▪ Send Paul ahead of others when moving to new locations (bathroom, lunch).
▪ Let Paul hold the door for other students to reduce bumping and dampen sounds.
▪ Organize structured activities at recess to minimize random sounds and touch while
playing.
▪ Talk to Paul’s parents about form-fitting clothing for school because this will reduce
the impact of intermittent light touch throughout the day.
▪ Teach Paul phrases he can use to ask others to be quieter; write a social story about
them so he can practice outside of situations that he needs to use them.
2. Managing Paul’s Registration Pattern (particularly related to movement input [vestibular]):
▪ Give Paul a movable cushion for his desk chair to help keep him activated while sitting
at his desk to work.
▪ Talk to Paul’s parents about the importance of form-fitting clothing to provide Paul
with even and continuous sensory input to his skin and joints as he moves.
▪ Let Paul stand at a counter to work sometimes; this provides additional movement
input and will help keep him adequately alert and attentive in class.
l Let Paul keep his backpack on during class; the extra weight on his body will provide
organized sensory input that enables him to keep focused.
Avoiding A pattern of sensory processing characterized by low neurological thresh-

olds and an active self‐regulation strategy for responding.
Neurological Threshold The point that the nervous system notices sensory stimuli.
Registration A pattern of sensory processing characterized by high neurological
thresholds and a passive self-regulation strategy for responding.
Seeking A pattern of sensory processing characterized by high neurological thresh-
olds and an active self-regulation strategy for responding.
Self-Regulation The way that a person responds to sensory stimuli.
Sensitivity A pattern of sensory processing characterized by low neurological
thresholds and a passive self-regulation strategy for responding.
Sensory Processing The way the brain receives, organizes, and makes meaning out
of the sensory input received by the sensory organs.
292 W. Dunn
Sensory Profile Measures A family of nationally standardized measures that

characterize a person’s patterns of sensory processing (i.e., Infant/ Toddler Sensory
Profile, Sensory Profile, Short Sensory Profile, Adolescent/Adult Sensory Profile,
Sensory Profile School Companion).
References
Dunn, W. http://www.sensoryprofile.com
Dunn, W. (2007a). Living sensationally: Understanding your Senses. Jessica Kingsley, United
Kingdom. This book is written for the public, and explains with many examples, how sensory
processing affects our everyday lives.
Dunn, W. (2007b). Supporting children to participate successfully in everyday life by using
sensory processing knowledge. Infants and Young Children, 20(2), 84–101. This article
provides a summary of the work completed to date related to sensory processing, and provides
examples for everyday practice.
Dunn, W., Saiter, J., & Rinner, L. (2002). Asperger syndrome and sensory processing: A
conceptual model and guidance for intervention planning. Focus on Autism and other Devel-
opmental Disabilities, 17(3), 172–185. This article provides a discussion about how to collabo-
rate with educational and therapeutic strategies, and provides case examples.
Myles, B. S., Hagiwara, T., Dunn, W., Rinner, L., Reese, M., Huggins, A., et al. (2004). Sensory
issues in Asperger syndrome and autism. Education and Training in Developmental Disabil-
ities, December. This article discusses the similarities and differences between children with
autism and Asperger syndrome.
http://classes.kumc.edu/sah/resources/sensoryprocessing/index.htm a learning website about sen-
sory processing concepts, research and case studies
www.sensoryprofile.com information about the Sensory Profile measures
Appendix
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Chapter 28
Sense and Sensibility: Relating Behavior
Control Issues with Self-Regulation
of Sensory Input
Robert F. Newby and Winnie Dunn
Jennifer was referred for a neuropsychological evaluation as a supplement to a

psychological evaluation for behavior problems and a previous history of academic
difficulties. Her prenatal development, birth, and early infancy were normal. Early
developmental milestones were attained at the normal rate for both motor and
language functions. There were no significant head injuries and no other neurological
insults. Since 5 years of age, during times of stress, she has gone through episodes
lasting up to a month of often closing her eyes and shaking her head. Her primary care
physician had ruled out Tourette’s disorder, but she had not had a neurological
evaluation. Jennifer’s parents reported in interview that she has always shown very
high sensitivity to sound, touch, and smell. Vision and hearing screening tests were
normal.
Jennifer was home-schooled for kindergarten through second grade, when her
father was working for an international corporation in Thailand. She then repeated
second grade when the family returned to the United States, so she was older than
typical students in fourth grade at the time of her neuropsychological assessment.
Questions arose during the early elementary years about her performances in all
academic areas, although her reading had improved since and she was said to be
successful in math ‘‘if she figured it out her own way.’’ Individually administered
achievement testing by her school when she started her repeat year of second grade
was below average, but both group-administered standardized achievement testing of
all students and individually administered achievement tests at school during fourth
grade had risen to the average or above average range in all areas. Intelligence testing
by a private psychologist 1 month prior to the neuropsychological evaluation was in
the average range, with equivalent verbal reasoning skills and visual-spatial problem-
solving skills (Table 28.1). Among core verbal subskills, Jennifer showed high
average vocabulary knowledge, average common-sense social reasoning, and
above average word comparison skills, or abstract verbal conceptualization. She
was well above average on a cluster of subtests sensitive to verbal working
memory. Among core visual-spatial subskills, she was average in abstract visual

296 R.F. Newby, W. Dunn
Table 28.1 Intelligence

Similarities (14) 91st
Picture Concepts (11) 63rd
Digit Span (17) 99th
Letter-Number Sequencing (12) 75th
Processing Speed index 80 9th
Coding (6) 9th
a
construction when copying block design patterns, average in discerning concepts in

pictures, and average in visual analogies. She was mildly impaired on a cluster of
subtests that reflected visual-perceptual processing speed. These findings were
virtually identical to previous testing at school in second grade.
Jennifer’s behavior patterns over the years included arguing, temper tantrums,
frequent oppositional behavior, difficulty with change or with disruptions in how she
wants things, and overfocused interests (not including anxious obsessions or compul-
sive patterns). She had shown strong social interest since early childhood, but her
social perception and social skills were poor, so her teacher requested a consultation
with the school occupational therapist. The focus of occupational therapy assessment
and intervention was on Jennifer’s ability to participate in activities and settings of
interest or need in everyday life, including home, school, and community. The
comprehensive assessment initially focused on identifying participation successes
and challenges. Then the therapist investigated what factors were likely to support or
interfere with her participation. Intervention planning evolved from the interaction of
these findings. Observations by the occupational therapist documented that Jennifer
seldom interacted with peers in the classroom and in the hallways. The occupational
therapist recommended that the teacher arrange Jennifer’s seating so she would have
as few interruptions from peers and other classroom activities as possible while trying
to complete seatwork, yielding improved productivity when she was working on
simpler review material. They also arranged for Jennifer to sit at the end of a table at
lunch to reduce bumping and jostling with peers; with this change, she ate well and
interacted with peers for brief episodes during lunch.
Jennifer was more agitated in the classroom than other students. She talked to
herself while working, scratched out and crumpled up papers, and finished more
28 Self-Regulation of Sensory Input 297
challenging work after peers. The teacher had placed her in a location to minimize
bumping (out of the aisle, away from the door, away from supplies) and to reduce
the impact of noise (with her desk next to the back of a freestanding bookshelf,
facing away from other students). The teacher also told the occupational therapist
that Jennifer was free to go to the library to work if she wished, and the teacher
sometimes cued this move if she noticed Jennifer escalating in the classroom.
Two other contextual factors were important to consider in the integrated
neuropsychological evaluation: First, several professionals involved in the other
recent evaluations raised a question of Asperger’s Disorder. Second, conflicts and
stresses in family interactions were acknowledged, and Jennifer’s family history
included attention problems, anxiety, depression, behavior patterns similar to
Jennifer’s (social difficulties and what her parents labeled ‘‘obsessive–compulsive
traits’’ but on careful questioning were more like rigid responses in social situa-
tions), and epilepsy.
Test Results
The recent psychological evaluation and the previous multiple assessments of

academic achievement allowed a focus on a broad array of other neuropsychologi-
cal functions, including motor, attention, executive, social reasoning, and memory,
as well as additional assessment of mental processing speed. Jennifer’s behavior
difficulties and reported oversensitivity in several sensory modalities were further
documented with standardized behavior rating questionnaires completed by parents
and teachers (Table 28.2). Concurrent with the neuropsychological testing at the
medical center, the school occupational therapist also conducted further skilled
observations and considered teacher, parent, and record information to verify
sensory processing responses within daily routines.
Jennifer’s effort and cooperation during testing were variable, so some of the
results (as specified) seemed to underestimate her actual skills; the bulk of results
were considered valid and reliable. Her low frustration tolerance was apparent
immediately upon beginning testing, when she became overwhelmed by the first
question, scowled, rested her head on the table, and muttered to herself angrily. She
responded to the rest of the tests with similar frustration despite encouragement and
praise from the examiner. Regardless of Jennifer’s irritability, she begrudgingly
completed the tasks required of her. Her eye contact was intermittent, especially
when frustrated, but during conversations with the examiner, her eye contact was
more consistent. She did not smile often during testing, but she appeared briefly
content when completing two tasks that were not particularly challenging for her.
During the most challenging tasks, she was argumentative and agitated. She ques-
tioned the examiner repeatedly (e.g., ‘‘If you would just read the words slower,
I would be able to remember them’’) and fidgeted in an agitated manner (e.g.,
coughing, kicking the table). Jennifer did not demonstrate excessive impulsivity,
though she sometimes began tasks before the examiner completed the instructions.

Tests Raw score Score Percentile Interpretation
Trial 1 right hand 94 34th
Trial 1 left hand 86 18th
Trial 2 right hand 83 13th
Trial 2 left hand 73 4th
Vigilance Task (9 min.)
Correct 42
Commission errors 2
Restricted Academic Task
Off-task 90th
Fidgeting 30th
Vocalizing 40th
Playing with objects 85th
Out of seat 0
Trailmaking Test
Part A 65 s 1st
Part B 55 s <1st
Categories >16th
Total errors 93 32nd
Conceptual level responses 90 25th
Intermediate Booklet 108 70th
Category Test
The Tower of London 124 95th
Test of Problem Solving
Explaining inferences 94 34th
Determining causes 88 21st
Negative why questions 67 1st
Determining solutions 97 42nd
Avoiding problems 82 12th
Total test 79 8th
Beery-Buktenica 103 58th
Developmental Test of
Visual-Motor Integration
Wide Range Assessment of
Memory and Learning –
Second Edition
Story memory – immediate (13) 84th
Delayed recognition (11) 63rd
Verbal learning – immediate (8) 25th
Delayed recognition (7) 16th
(continued )

Design memory – immediate (5) 5th
Delayed recognition (9) 37th
Wide Range Assessment of
Memory and Learning
Visual learning – immediate (9) 37th
Attention Deficit Hyperactivity
Disorder Rating Scale –
Fourth Edition
Home version
Total 90th
Hyperactivity-impulsivity 98th
Inattention 80th
School version
Total 50th –75th
Inattention 50th
Achenbach Child Behavior
Checklist
Parent Form
Somatic complaints [53] 62nd
Rule-breaking behavior [64] 92nd
Aggressive behavior [86] >97th
Social problems [59] 81st
Attention problems [64] 92nd
Sensory Profile
Sensory Processing Patterns
Seeking 100/130 Probable difference
Avoiding 95/145 Definite difference
Sensitivity 89/100 Typical performance
Registration 68/75 Typical performance
Auditory processing 27/40 Probable difference
Visual processing 33/45 Typical performance
Vestibular processing 50/55 Typical performance
Touch processing 78/90 Typical performance
(continued )

Multisensory processing 27/35 Typical performance
Oral sensory processing 52/60 Typical performance
Sensory processing related to 43/45 Typical performance
endurance/tone
Modulation related to body 41/50 Typical performance
position & movement
Modulation of movement 25/35 Typical performance
affecting activity level
Modulation of sensory input 19/20 Typical performance
affecting emotional
responses
Modulation of visual input 15/20 Typical performance
affecting emotional
responses and activity level
Behavior and Emotional
Responses
Emotional/social responses 56/85 Probable difference
Behavioral outcomes of 13/30 Definite difference
sensory processing
Items indicating thresholds for 14/15 Typical performance
response
Seeking 98/130 Probable difference
School Companion
Seeking 55/60 Typical performance
Sensory Processing and
Behavior Patterns
Auditory 34/50 Probable difference
Visual 47/55 Typical performance
Movement 63/70 Typical performance
Touch 55/60 Typical performance
Behavior 38/75 Definite difference
School factor 1 70/105 Probable difference
School factor 2 51/65 Typical performance
School factor 3 76/85 Typical performance
School factor 4 39/55 Probable difference
Jennifer used her right hand as her dominant hand for manual-motor activities.
Her graphomotor (paper-and-pencil) skills were average when copying geometric
drawings. Fine manual dexterity was average with her dominant hand and low
average with her nondominant hand.
Assessment of attention, impulse control, and related executive mental functions

was generally adequate, with occasional inconsistencies associated with effort and/or
feelings of frustration. When Jennifer was asked to respond to a specified number
sequence flashing on a small computer screen over a several-minute period, her
sustained attention was in the normal range, and her number of incorrect impulsive
responses was normal. When asked to work on math problems alone while being
observed through a one-way window for 10 min, she followed directions minimally,
with excessive off-task time playing with distracter toys on the table, but her motor
control was not outside the expected limits. Her planning and sequential problem-
solving were well above average. Her abstract reasoning and concept formation with
complex visual material were high average. She showed average basic concept
formation, adaptive switching of mental sets, and maintenance of mental sets, but
her performance was not as consistent as on the previous two tests because of
frustration and apparent overcomplicated thinking for the task. Her visual searching
speed was mildly to moderately impaired with a simple number sequence and moder-
ately impaired with an alternating number and letter sequence; the lack of significant
difference between these two findings implicated processing speed more than execu-
tive skills. Her social perception and social reasoning were mildly impaired.
Several memory skills were assessed. All aspects of verbal memory were
average to high average. Most visual memory indicators were average, with some
inconsistencies when reproducing drawings from memory.
Jennifer’s mother’s responses to the Home Situations Questionnaire indicated mild
to moderate compliance problems in most home and community settings. The Home
Version of the ADHD Rating Scale – IV showed clinically significant hyperactive/
impulsive symptoms and normal range inattentive symptoms. The multidimensional
Child Behavior Checklist showed highly clinically significant oppositional/aggressive
behavior; clinically significant anxious/depressed symptoms and particularly sleep
problems; and clinically borderline attention problems and withdrawal.
On a parallel set of questionnaires completed by Jennifer’s fourth grade teacher,
moderate compliance problems were noted in all classroom settings and in several
less-structured situations outside the classroom at school. The School Version of
the ADHD Rating Scale – IV showed normal range hyperactive/impulsive symp-
toms and normal range inattentive symptoms. The Teacher Report Form of the
Child Behavior Checklist showed clinically significant oppositional/aggressive
behavior and anxious/depressed symptoms. On the one hand, in an accompanying
note, the teacher expressed concern about Jennifer’s increased irritability, frustra-
tion, and anger across the school year, with occasional physical aggression. On the
other hand, Jennifer was described as smart with a fun sense of humor.
Jennifer’s parents completed the Sensory Profile, which is a nationally standar-
dized measure that characterizes children’s responses to sensory experiences in
everyday life (Dunn, 1997, 2006) (see Chap. 27 for details about these measures and
about Dunn’s model of sensory processing). Most of Jennifer’s scores on the Sensory
Profile were just like her peers’, suggesting that she was primarily processing sensory
input the way other children of her age do. Her parents reported that she sought
sensory input more than other children (i.e., þ1 to þ2 standard deviations [SD]), and
avoided sensory input much more than peers (i.e., more than þ2 SDs). At first this
might seem contradictory; however, according to Dunn’s model of sensory proces-
sing (Dunn, 1997), seeking and avoiding patterns indicate the child’s need for
control over sensory input (seekers try to get more input by adding to or intensifying
sensory experiences, while avoiders try to get less input by withdrawing or acting
out to get removed from situations).
The only specific sensory modality system that was of concern on the Sensory
Profile was auditory processing (i.e., þ1 to þ2 SDs), although Jennifer’s parents
verbally reported that she also overreacted to touch and smell at home. Other scores
that fell into the ‘‘more than others’’ category were behavioral patterns that could be
associated with difficulty with sensory processing (i.e., Emotional/Social responses
and Behavioral Outcomes of sensory processing).
The teacher completed the Sensory Profile School Companion, and reported that
Jennifer required more teacher attention (School Factor 1) and was less tolerant
(School Factor 4) than other students on the basis of Sensory Profile School Com-
panion results. She showed an average amount of seeking, sensitivity, and registra-
tion, but she avoided stimuli much more than peers (more than þ2SDs). Just like the
parents, the teacher indicated that Jennifer was challenged with auditory input and
demonstrated much more behavioral outcomes of sensory processing than peers
(more than þ2 SDs). Consistent with the parents’ comments, but not with their
standardized scores on the Sensory Profile, the teacher reported that Jennifer had
more challenges with touch than peers as well.
In comparing the parent and teacher reports of sensory processing, it was notable
that Jennifer’s parents reported more seeking than the teacher did. School provides
more structure and therefore can provide boundaries for choosing behaviors that
increase or intensify sensory experiences (e.g., hopping instead of walking, hum-
ming, or singing). The structure at school may be an important factor to build into
learning and intervention activities.
Jennifer’s most prominent issues were felt to be best represented by the diagnosis of
Oppositional Defiant Disorder (ODD), with some accompanying features of both
Asperger’s Disorder (especially rigidity and social reasoning difficulties) and mood
disorder (especially irritability). Her neuropsychological profile was essentially nor-
mal, except for mental processing speed and social reasoning, each of which was felt
likely to be related to her behavioral issues. The ODD diagnosis was based on her
classic, persistent pattern of negativistic, defiant, disobedient, or hostile behavior
toward authority figures, with stubbornness, resistance to directions, and unwillingness
to compromise. Although sometimes the oppositional behavior is directed particularly
at certain adults but not other adults, and family interaction patterns often need to be
examined to understand how to change the opposition, Jennifer’s ODD difficulties
were prominent at both home and school. Jennifer had a lifelong pattern of being more
sociable than children who receive a full diagnosis of Asperger’s Disorder or another
autistic spectrum disorder, but her features of this spectrum would need to be taken
into account in treatment planning. Her possible mood disorder was felt to deserve
attention in psychotherapy and further evaluation by a psychiatrist, to determine
whether medication would be recommended to stabilize her mood.
The occupational therapist noted that Jennifer’s scores on the Sensory Profile
were primarily relevant as they informed the team about the possible factors that
interfered with or support participation. For Jennifer, working successfully at
school and developing social interactions were the primary goals for her parents
and teachers. In her case, sensory processing findings did not fully explain the
magnitude of behaviors. On the one hand, as reported by the neuropsychologist and
others, her behaviors were consistent with other diagnoses (ODD, Asperger pat-
terns). On the other hand, Jennifer’s specific patterns of sensory processing would
be expected to lead to some of the same behaviors. We would not eliminate these
diagnoses by incorporating sensory processing constructs into intervention
planning. However, with sensory processing knowledge, we could create activities
and environments that were less challenging for Jennifer’s nervous system, thereby
reducing the frequency and intensity of her negative responses. When Jennifer is
not pushed past her capacity to deal with sensory experiences, she may be more
available to complete schoolwork and learn social interaction strategies.
In terms of broad functioning, Jennifer participated in several activities success-
fully at school when activities were more structured, including most academic
instruction and practice. Social situations with peers and siblings were more chal-
lenging for her. Her teacher and parents wanted Jennifer to have a successful school
experience both academically and socially. Fortunately, Jennifer did not show com-
pelling signs of learning disability in recent academic assessments, even though
questions in this area had arisen in the past. The latter may have been related to her
atypical school experience during early elementary years, particularly considering
her oppositional behavior during her home-schooling time.
Ultimately, the important question is whether Jennifer’s heightened control
responses to sensory input, interestingly seen both in the areas of seeking and
avoiding, should be considered contributory, causative, or primary in reference to
her oppositional, mood, and social difficulties. However, this question can be
answered only at a theoretical level at this time. Further research on this sensory
processing model needs to demonstrate methods such as careful longitudinal
measurement of all behavior patterns involved, well-controlled intervention stud-
ies, and structural equation modeling. For instance, the sensory findings in this case
could represent a constitutional, relatively stable, but potentially modifiable factor
that is independent from (though likely correlated with) temperament or mood
factors. Conversely, the sensory response patterns identified by the Sensory Profile
could represent facets or ‘‘offshoots’’ of the predominant oppositional behavior
patterns that Jennifer had developed in interpersonal relationships over the years.
It would be difficult to identify which among a multiple-approach set of interven-
tions for a case like Jennifer’s was most operative in producing adaptive change, if
the interventions were successful. This represents the classic dilemma of interpret-
ing cause and effect with anecdotal rather than experimental evidence. The follow-
ing list of recommendations included ideas from the knowledge bases about both
the psychiatric disorders and sensory processing patterns involved.
Supporting Schoolwork
The findings suggested that sounds may interfere with Jennifer’s school participa-
tion. This could have been related to her relatively late immersion in classroom
situations compared with other children of her age, in light of her early home
schooling. Since classrooms are busy places, there are many sounds to contend with
throughout the day. Jennifer may have already reached her capacity to manage
auditory input from her bus ride and getting into her classroom, which may
contribute to her challenging attitude at the start of the day.
There were inconsistent findings about touch, but it seemed that at least in some
situations, touch was also challenging. School and home introduce different chal-
lenges related to touch. On balance, children have more options for getting away
from bothersome touch at home. Jennifer’s parents reported during an interview
that she was sensitive to touch when she had to contend with crowded situations
(family gatherings, social hour after church, waiting in line at the grocery store),
even though, overall, her standard score was in the typical range on the Sensory
Profile. At school, Jennifer encountered many more ‘‘crowding’’ situations, which
combine auditory and touch experiences, and so the combination of these challeng-
ing inputs may be too much for her, contributing to unpleasant behaviors.
The fact that seeking and avoiding are the sensory processing patterns associated
with a need to control sensory input was consistent with other findings about
Jennifer’s controlling behaviors. It was not clear from the comprehensive findings
what the source of control needs were (i.e., behavioral or sensory), but nonetheless,
knowing that she sought control could be a guidepost for building better work
patterns. Giving choices is important; her teacher was already using some strategies
to give her control, and the school team could build on these to increase her classroom
work productivity. For example, she could be given several work assignments and be
allowed to work in whatever order she likes. She could choose the location for work,
giving her quiet and isolated options.
Supporting Social Participation
Jennifer’s teacher and parents were also concerned about her social interactions. As
with schoolwork, her sensory processing patterns could be contributing to her
negative and rigid behavior. Children who are avoiders tend to isolate themselves
as a strategy for reducing ‘‘random’’ sensory input. It is important to remember this
because Jennifer would probably benefit from time alone every day, which should not
be seen as an antisocial gesture but, rather, a time for her to regroup and calm down
from what she perceives as an onslaught of auditory and touch input (avoiders have
low thresholds for sensory input, so it does not take very much to feel overwhelmed).
Structured social interactions would be more successful with sound and touch
managed within the routine. If Jennifer did not have to worry so much about
extra sensory input, then she would be more available to learn social skills within
the context of school activities. An additional reason to manage sensory input for
her is that her outbursts may be partially a reflection of her sensory processing as
well; when she is feeling overwhelmed, acting out stops the overwhelming situation
quickly.
The team decided to incorporate both behavioral and sensory processing ideas to
create structured social interaction opportunities for Jennifer. Being mindful about
seating arrangements (e.g., placing her in the corner of the group facing out),
background noise (quiet, isolated place), level of difficulty (practicing social skills
with easy tasks because Jennifer did better when work was less complex), and
requirements for taking turns were felt likely to help her participate successfully.
Building social interaction skills systematically would be helpful for both Jennifer
and the other children in her classroom. It could also be useful to identify situations
in which Jennifer could be seen as an expert. Perhaps she could help someone
with math, reading, or social studies since she did well in these areas. The individual
peer-assistance situation naturally reduces touch and sound interferences, and serving
as the ‘‘expert’’ can provide opportunities for being seen positively by peers.
Psychotherapy and Parent Coaching
Children exhibiting oppositional and defiant behaviors along with attention problems
typically benefit from some form of structured behavior management program
implemented in both the home and school settings. For Jennifer, it was predicted
that progress might be gradual as her mood and flexibility problems were also
addressed in psychotherapy. Behavioral programming should include the use of
clear and specific commands, noncontingent quality time with her parents, the
targeting of positive behaviors to be increased with reinforcement, the consistent
use of negative consequences delivered in an emotionally neutral manner in response
to inappropriate behaviors, and a greater proportion of positive incentives than
reprimands. Such strategies should help to keep behavior problems from escalating
to a point at which tempers are lost. Family psychotherapy is often helpful in shifting
relationships and communication patterns among family members, particularly
regarding authority.
Further Medical Evaluation
Jennifer’s occasional episodes of closing her eyes and shaking her head were not
likely to represent a neurologic condition, such as seizures, but an evaluation by a
neurologist was felt to be prudent to rule out this possibility.
Jennifer’s overall picture was clearly complex, making the interdisciplinary
collaboration particularly valuable, at both the assessment and intervention levels.
A balanced combination of viewpoints in this case avoided polemic arguments
about the primacy of one theory vs. another, while providing important clarification
and putting into perspective some hypotheses that had been raised (particularly, the
question of autistic spectrum disorder).
Sensory Processing The way the brain receives, organizes, and makes meaning out
of the sensory input received by the sensory organs.
Sensory Profile Measures A family of nationally standardized measures that char-
acterize a person’s patterns of sensory processing (i.e., Infant/Toddler Sensory
Profile, Sensory Profile, Short Sensory Profile, Adolescent/Adult Sensory Profile,
Sensory Profile School Companion).
Seeking A pattern of sensory processing characterized by high neurological thresh-
olds and an active self regulation strategy for responding.
Avoiding A pattern of sensory processing characterized by low neurological
thresholds and an active self regulation strategy for responding.
References
Dunn, W. (2007). Supporting children to participate successfully in everyday life by using sensory
processing knowledge. Infants and Young Children, 20(2), 84–101. This article provides a
summary of the work completed to date related to sensory processing, and provides examples
for everyday practice.
Dunn, W., Saiter, J., & Rinner, L. (2002). Asperger syndrome and sensory processing:
A conceptual model and guidance for intervention planning. Focus on Autism and other
Developmental Disabilities, 17(3), 172–185. This article provides a discussion about how to
collaborate with educational and therapeutic strategies, and provides case examples.
Dunn, W. (1997). The impact of sensory processing abilities on the daily lives of young children
and their families: A conceptual model. Infants and young children, 9(4), 23–35.
Dunn, W. (2006). Sensory Profile School Companion. San Antonio, the Psychological Corporation
http://www.sensoryprofile.com Information about the Sensory Profile measures.
Chapter 29
Elusive, Inclusive, or Conclusive? (Central)
Auditory Processing Disorder
Susan Oliff Carneol
At age 4, Michelle was a cheerful and creative little girl, but something set her apart
from her peers. She had an unremarkable birth history, had been relatively healthy,
and achieved her early speech, language, and motor milestones within age expecta-
tions. Despite these positive indicators, her parents felt a nagging concern about
her that they could not identify. Michelle’s paternal uncle had a history of learning
and behavior difficulties, but her parents felt that his problems were different
than hers. As a preschooler, she was immature, inattentive, and impulsive compared
with other children of her age. She had difficulty maintaining eye contact and follo-
wing directions, and did not always respond when her name was called. She often
lacked energy to complete physical activities expected for her age. Her parents’
suspicions were somewhat confirmed when Michelle did not do well on the lang-
uage and motor portions of a kindergarten screening. This prompted their quest to
find out what was causing her developmental and social difficulties. Over the
course of the next 5 years, she underwent two neuropsychological evaluations,
three comprehensive Individualized Education Program (IEP) assessments, as well
as informal assessments by academic tutors. None of the testing resulted in a
satisfactory diagnosis.
At age 9, Michelle was a personable and upbeat third grader with decent grades
on her report card. She was doing grade-level work in reading, spelling, and writing.
She worked with an after-school tutor primarily for math, but she also received help
in science and social studies. Michelle did not receive any special education support
at school because she did not meet the state’s eligibility criteria for programming.
Her parents encouraged her to pursue hobbies that she enjoyed, such as drawing,
writing, reading, and participating in drama activities. They and her teachers agreed
that Michelle learned best in one-on-one situations vs. large group settings. She
required verbal directions to be repeated and/or broken down into smaller units
and benefited when visual cues were added to the spoken message. Michelle had
a difficult time with verbal expression. She often used words that did not apply or
seemed inappropriate for the topic. Although Michelle was described as outgoing
and friendly, she had difficulty interacting with peers. All these issues were a source

308 S.O. Carneol
of concern and frustration for Michelle, her parents, and teachers, especially since
she always demonstrated average performance on various test batteries for intelli-
gence, learning, and communication. Her private tutor recognized that she was
capable of understanding the subject material in their one-on-one tutoring sessions
and wondered why Michelle was so lost in the classroom. The tutor questioned
an Auditory Processing Disorder. After researching this diagnostic label on the
Internet, Michelle’s parents requested a comprehensive evaluation to rule out a
(Central) Auditory Processing Disorder [(C)APD] (Table 29.1). Michelle’s doc-
tor referred her to the outpatient speech and hearing clinic at a major pediatric
medical center for a multidisciplinary team assessment.
Auditory Processing Disorder is a term that has been used by many professionals
in learning and communication disorders for the past 50 years. It is a complex
problem that can mean different things to different people. Generally speaking,
‘‘auditory processing’’ implies how the brain recognizes and interprets sound.
‘‘Disorder’’ implies that something adversely affects the processing or interpreta-
tion of the auditory signal. Some professionals propose that an ‘‘Auditory Proces-
sing Disorder’’ occurs when the acoustic stimuli becomes distorted or compromised
before the cortex receives it for interpretation, despite normal hearing acuity.
Comorbidity of language impairments, memory problems, attention deficits, low
cognitive ability, learning disabilities, and other behavioral/emotional difficulties
are common. This has led many to question whether the disorder actually exists as a
stand-alone diagnosis. Some argue that the term is overused.
The American Speech-Language-Hearing Association (ASHA) defines (C)APD
as ‘‘difficulty in processing auditory information in the central nervous system’’
(hence the ‘‘C’’). A (C)APD is demonstrated by poor performance on one or more
auditory skills. Children may be misdiagnosed with (C)APD because of lack of
thorough assessment to best delineate the nature of the child’s difficulties. Other
professionals feel that there may be children who have a ‘‘true’’ auditory processing
disorder but go undiagnosed because those involved are not oriented to the disorder.
Research is currently underway to better understand the neurological and cognitive
variables of a (C)APD and the functional impact it can have on an individual’s life.
Research is also focusing on the efficacy of evidence-based practices and the
appropriateness of various interventions. ASHA (2005) states that there is enough
scientific evidence to support (C)APD as a diagnostic entity.
Table 29.1 Symptoms of a possible (C)APD

l Trouble listening and attending in noisier situations
l Difficulty remembering information presented orally
l Problems carrying out multi-step oral directions
l Difficulty expressing thoughts and ideas in cohesive manner
l When speaking, may confuse syllable sequences or transpose sounds in words
l Difficulty developing and using vocabulary
l Low academic achievement, particularly in language based subjects
29 Elusive, Inclusive, or Conclusive? (Central) Auditory Processing Disorder 309
It is important to understand the neurophysiological constructs of hearing to

better understand (C)APD. Hearing begins when sound energy is captured by the
outer ear. It is then transformed into mechanical energy as the tiny bone structures
of the middle ear begin to move. The energy is changed to compressed waves of
fluid in the inner ear, which stimulate hair-like nerve cells transmitting impulses up
the eighth auditory nerve to Heschl’s gyrus in the left temporal lobe of the brain. At
this point, the brain recognizes the nerve impulse as sound and begins to interpret it
as speech or nonspeech auditory stimuli. The auditory stimuli networks within
different areas of the brain and across hemispheres depending on the task (i.e.,
listening, talking, reading, writing, etc.).
The diagnosis can only be made by an audiologist with advanced training and
experience in (C)APD, and that audiologist must collaborate with speech-language
pathologists, educators, psychologists, and parents, for example, to determine the
functional impact of the disorder. Although several variables impact listening, the
diagnosis of (C)APD requires demonstration of a deficit in the neural processing of
the auditory stimuli that is not due to peripheral hearing loss, language, cognition,
or other related factors. Phonological awareness of, attention to, and memory of
auditory information are reliant on an intact central auditory nervous system;
however, these are considered to be higher order cognitive–linguistic skills and
not included in the definition of (C)APD (Table 29.2).
Objective neurological tests to diagnose (C)APD are in the experimental, res-
earch stages. The diagnosis is currently made through a battery of standardized
behavioral audiometric tests administered by an audiologist. The purpose of the (C)
APD evaluation is to evaluate the brainstem and cortical function of the central
auditory nervous system by taxing the auditory system by reducing the external
redundancy of the signal (Table 29.3). Even though verbal and nonverbal auditory
stimuli are used on the tests, the effect of language, attention, and memory on
several of the test tasks has been widely debated. Thorough speech and language and
cognitive assessment outlining the patient’s skills in these areas aid in interpretation
of audiometric results. If the audiological battery yields poor or inconsistent perfor-
mance across all tests, higher order cognitive–linguistic, attentional, or motivational
confounds should be suspected (Table 29.4).
Table 29.2 Auditory skills assessed in (C)APD battery

l Sound localization: Identify from which direction the sound comes.
l Discrimination: Recognize whether two sounds are the same or different.
l Pitch Pattern Perception: Determine what sounds are high and low pitched.
l Temporal Auditory Processing: Recognize breaks between sounds in words and
words in sentences.
l Dichotic Listening: Understanding speech when two competing signals are
presented in each ear, simultaneously.
l Auditory Figure Ground: Understand speech through background noise.
l Recognized speech if the signal is degraded.
310 S.O. Carneol
Table 29.3 Criteria for (C)APD testing

l Normal to near normal peripheral hearing sensitivity
l Normal to near normal cognitive functioning
l Minimum age requirement – 7-years old
l Sufficient receptive and expressive language skills
l Fairly intelligible articulation
Table 29.4 Possible differential diagnosis

l Dyslexia/reading disability
l Attention deficit disorder
l Autism spectrum disorder
l Developmental delay/cognitive disability
l Speech and language impairment
l Learning disability (language based and nonverbal)
l Mood disorder
The (C)APD battery is recognized for its sensitivity in identifying that a problem
exists, but it has been criticized for lacking specificity in providing a differential
diagnosis for children with similar symptoms that may be better defined by another
diagnostic label. The ASHA position statement (2005) concluded that ‘‘any defini-
tion of (C)APD that would require complete modality specificity as a diagnostic
criterion is neurophysiologically untenable.’’ However, the perceptual deficit is
expected to be most pronounced on auditory tasks vs. other modalities (ASHA,
2005, page 2).
Returning to Michelle and her diagnostic experiences, she was referred for an
IEP evaluation at age 4 as a result of her poor performance on the kindergarten
screening. Results identified mild to moderate delays in receptive and expres-
sive language skills for which she received speech and language therapy at school
(Tables 29.5 and 29.6). Her parents also pursued private occupational therapy and
physical therapy for her mild motor deficits and lack of physical endurance. She
received those services for 1 year. Despite her progress, her mom and dad were still
concerned about Michelle’s social development and pursued a pediatric neuropsy-
chological evaluation at a major medical center to rule out Asperger’s Syndrome.
Test Results, Formulation, and Recommendations
Psychometric testing identified average verbal and nonverbal skills. Inattentive-

ness, hyperactivity, and impulsivity were indicated. Although eye contact was
reduced, Michelle’s social interaction with her parents and the examiner were
Table 29.5 Intellectual – evaluation at ages 4–5 years

General cognitive ability 82 12th
Verbal comprehension [39]
Naming vocabulary [41]
Early number concepts [44]
Picture similarities [36]
Pattern construction [43]
Copying [43]
a
appropriate. No odd or unusual social behaviors were observed or reported. Asper-

ger’s Syndrome was ruled out. An Attention Deficit Hyperactivity Disorder (ADHD)
was suspected. Parent training and classroom accommodations were recommended.
Michelle’s parents felt that her attending difficulties were not due to ADHD
but somehow related to lack of energy and reduced muscle tone. Michelle preferred
quiet activities she could do on her own, such as drawing and reading. She was
more socially engaging in one-on-one interactions. Her parents noticed that her
attention difficulties were most evident in large group situations (i.e., classroom
or play groups). Michelle began demonstrating signs of anxiety, often ruminating
over others’ feelings or problems they had. Persistent concerns over Michelle’s
well-being prompted her parents to pursue a neuropsychological reevaluation by
the same professional who had seen Michelle 1 year earlier.
Results from that reevaluation indicated that Michelle’s overall cognitive abil-
ities were in the low average range (Tables 29.7 and 29.8). Nonverbal skills were
reported to be solidly average, with verbal falling at the low end of average.
Assessment of her motor skills indicated good motor planning abilities with slower
processing speed. Performance on verbal tasks revealed difficulties with naming
items and following multistep directions. Assessment of executive functioning
indicated slow motor speed and impulsivity despite adequate motor planning and
attention. The neuropsychologist felt that Michelle’s difficulties continued to be
consistent with mild ADHD. Her impulsivity, pervasive thinking about the con-
cerns of others, low motivation, and immaturity were related to regulatory difficul-
ties associated with ADHD rather than an internalizing disorder. Although the
neuropsychologist recognized the progress Michelle was making with her cogni-
tive and behavioral skills, it was recommended that her family follow up with a
therapist or attend a parent training group to help manage her behavioral difficulties
as they arose. A trial course of stimulant medication was also recommended. These
recommendations were not pursued, and in the middle of first grade, Michelle
underwent a triennial IEP reevaluation (Tables 29.9 and 29.10).
Psychological assessment by the school psychologist indicated that Michelle’s
overall cognitive skills ranged from average to high average. Hyperactivity, impul-
sivity, and inattentiveness were again reported. There were also concerns about her
312 S.O. Carneol
Table 29.6 Other cognitive functions – evaluation at ages 4–5 years

Tests Raw Score Percentile Age
score equivalent
NEPSY
Visual attention (11)
Narrative memory (6)
Imitating hand position (10)
Phonological processing (11)
Statue (6)
Visuomotor precision (11)
Train
Time 32
Errors 26th–75th
Car
Time 25
Errors 11th–25th
Visual Attention
Bunnies
Time 79
Cats
Time 83
Imitating Hand Positions
Preferred hand 26th–75th
Nonpreferred hand 26th–75th
Purdue Pegboard
Preferred hand 79
Nonpreferred hand 68
Both hands 87
Vineland Adaptive Behavior Scales
Communication 92 30th 3–11
Receptive 3–11
Expressive 3–3
Written 5–3
Daily living skills 80 30th 3–3
Personal 3–1
Domestic 3–3
Community 3–8
Socialization 89 23rd 3–8
Interpersonal 4–10
Play and leisure 2–8
Coping skills 3–7
Motor skills 65 1st 2–10
Gross motor 2–4
Fine motor 3–6
Adaptive behavior composite 76 5th 3–5
(continued)

Tests Raw Score Percentile Age
score equivalent
Clinical Evaluation of Language 89 23rd
Fundamentals – Preschool
Receptive language score 96 39th
Expressive language score 92 30th
Total language score (3)
Linguistic concepts (9)
Basic concepts (11)
Sentence structure (7)
Recalling sentences (11)
Formulating sentences (10)
Word structure 89 23rd
Table 29.7 Intellectual – evaluation at ages 5–7 years

Differential Abilities Scale Score Percentile
Nonverbal cluster 93 32nd
General cognitive ability 88 21st
Verbal comprehension [58]
Naming vocabulary [58]
Early number concepts [51]
Picture similarities [45]
Pattern construction [46]
Copying [41]
nervousness and worrying. Academic skills were average to above average. Speech
and language testing indicated age-level skills, and she was discharged from speech
and language therapy. In light of her average cognitive abilities and grade-level
scores on achievement testing, Michelle’s IEP was discontinued, despite the attend-
ing and psychosocial issues. A student plan was implemented to provide her teachers
with classroom modifications and accommodations (e.g., use of organization check-
lists, additional time for tests in small group settings).
Michelle’s family moved when she was in second grade. Her student plan followed
her to the new school in a different district. Despite grade-level academic skills, her
teachers began to raise familiar concerns: Michelle had difficulty working indepen-
dently in the classroom. She had problems following directions, and needed extra
time to complete work. She often needed redirection, reminders, and visual aids
such as written lists to help her remember steps to a task. One teacher reported that
Michelle was exhibiting ‘‘stress-related’’ behaviors, such as fidgeting, short breaths
when asking questions, and restarts and revision for both verbal and physical activ-
ities. She continued to have difficulty paying attention, following verbal instructions,
314 S.O. Carneol
Table 29.8 Other cognitive functions – evaluation at ages 5–7 years

NEPSY
Visual attention (5)
Imitating hand position (10)
Tower (10)
Finger tapping (5)
Comprehension of instructions (8)
Visual precision (6)
Car
Time 19
Errors 11th–25th
Motorcycle
Time 44
Errors 3rd–10th
Visual Attention
Cats
Time 111
Faces
Time 180
Omissions 3rd–10th
Commissions 3rd–10th
Imitating Hand Positions
Preferred hand 26th–75th
Nonpreferred hand 26th–75th
Finger Tapping Test
Repetitions 11–25% 11th–25th
Sequences 11–25% 11th–25th
Preferred hand 11–25% 11th–25th
Nonpreferred hand 11–25% 11th–25th
Luria’s Tapping Test
Part I correct 16
Part II correct 12
Total correct 28
Delayed Alternation Task
Trials 20
Correct responses 16
Correct alternations 12
Correct consecutive alternations 6
Consecutive perseverative errors 1
remembering what people said, and understanding new ideas. Repetition was often
needed before she would respond or understand new information. Verbal expres-
sion was becoming more difficult for her. Michelle had difficulty finding the right
word to say, putting events in the right order when telling stories or relaying an
Table 29.9 Intellectual – evaluation at age 7 years and 3 months

Woodcock Johnson III Tests of Cognitive Abilities Score Percentile Age equivalent
General intellectual ability (standard) 109 72nd 7–10
Verbal ability 108 71st 8–2
Thinking ability 119 89th 9–6
Cognitive efficiency 98 45th 7–1
Processing speed 96 39th 6–11
Short-term memory 101 53rd 7–4
Verbal comprehension 108 71st 8–2
Visual-audio learning 104 62nd 7–9
Spatial relations 104 66th 8–5
Sound blending 139 99.5th
Concept formation 107 67th 8–0
Visual matching 98 44th 7–1
Numbers reversed 94 34th 6–6
Decision speed 94 35th 6–8
Memory for words 109 73rd 9–0
Table 29.10 Academic achievement – evaluation at age 7 years and 3 months

Test of Early Reading Ability – Third Edition 117 87th
Test of Early Written Language – Second Edition 135 99th
Test of Early Mathematics Ability – Second Edition 93 32nd
event, expanding on an answer or providing details. Although her reading compre-

hension skills were reported to be good, she had difficulty explaining what she had
read. She often got frustrated over her inability to effectively express herself.
Interestingly, her written expression skills were reported to be good in comparison
to her verbal expression.
Michelle continued to work with her tutor during the summer between second
and third grade. During this time, Michelle was referred to a speech and hearing
clinic. This center provides multidisciplinary assessments for children with school
performance and/or language-based learning difficulties. The team is composed of
pediatric speech-language pathologists, audiologists, and child psychologists. The
majority of referrals are to rule out a (C)APD. Review and careful consideration
of the child’s history, parent and teacher reports, clinical observations, and evalua-
tion findings should result in a differential diagnosis that will determine the most
effective intervention. Collaboration among the professionals occurs at the time of
intake, when the child’s records (such as previous evaluations, IEPs, report cards,
parent and teacher checklists) are reviewed. The child is triaged to the appropriate
professional(s) for additional evaluations, based on how current and complete the
information is. The team reconvenes after the child has been assessed to review
findings and make recommendations that are then shared with the family. This
particular center has found that 5–10% of children referred for (C)APD actually
316 S.O. Carneol
met criteria for the diagnosis. The other more common diagnoses include specific
language impairment, attention deficit disorder, anxiety disorder, low cognitive
abilities, second language learners, and/or reading disabilities.
After reviewing Michelle’s records, the team determined that her (C)APD evalua-
tion would consist of speech and language testing and audiological assessment.
Because extensive cognitive assessment had been done in the past, further psycholog-
ical assessment would be deferred, pending the speech, language, and audiological
findings.
Michelle’s language evaluation took place just prior to the start of her third
grade year. She impressed the examiner with her friendly demeanor and ability to
self-correct her errors. Her eye contact was appropriate, and she was quite chatty.
Michelle demonstrated good effort throughout the 2½-hour session, even for tasks
that she said were hard for her. Although her sitting and on-task behavior were
generally good, Michelle was observed to literally get out of her seat, kneel on the
chair, and lean across the table for tasks that required confrontation naming or
language formulation, suggesting some level of stress.
The evaluation focused on assessing Michelle’s understanding and use of vo-
cabulary, linguistic concepts, sentence structure, grammar, auditory memory, and
conversational and other pragmatic language skills. Time constraints did not allow
for assessment of her written language abilities; however, school records indicated
grade-level reading decoding and comprehension, spelling, and written expression
(Table 29.11).
Michelle’s overall language scores were in the solidly average range with no
significant difference between her receptive and expressive language scores. How-
ever, there was noticeable variability in her subtest performance. Her strongest
scores were on those subtests that allowed for repetition of the verbal stimuli and/or
provided visual cues such as words or pictures. She frequently corrected herself.
This suggested a certain level of awareness of her error responses and perhaps a
need for extra time to respond.
Michelle scored in the low average range on the subtest that required her to listen
to short narratives (no picture cues or repetition allowed) and answer questions
about the passage. She had the most errors on questions that required her to recall
specific details vs. responding to questions that required her to make inferences on
the basis of common sense or prior knowledge.
Michelle demonstrated increased motor restlessness and ‘‘out of seat’’ behavior
for most of the expressive language subtests. When asked to formulate sentences
about a pictured scenario using a specific target word in her sentence, she demon-
strated speech dysfluencies in the form of part word repetitions, phrase revisions,
and short inhalations before initiating her response. Despite these behaviors (which
suggest some degree of stress) her ultimate sentences were well-formulated with
good word choices.
Michelle did poorly on a sentence repetition task (which is considered an expres-
sive task on this test). However, sentence repetition also requires short-term auditory
memory. No pictures were provided, and the examiner was not allowed to repeat
orally presented stimuli. It was interesting to note that she did not demonstrate
Table 29.11 Other cognitive functions – evaluation at age 7 years and 3 months
Tests Score Percentile Age equivalent
Test of Language Development – Primary – Third Edition
Spoken language 96 39th
Listening 100 50th
Organizing 97 42nd
Speaking 94 35th
Semantics 94 35th
Syntax 100 50th
Expressive Language Test
Sequencing 105 59th
Defining 95 43rd
Generating examples 120 91st
Grammar/syntax 113 80th
Concepts 90 26th
Identifying categories 123 93rd
Defining categories 96 44th
Generating examples 124 95th
Total test 113 79th
Peabody Picture Vocabulary Test – Third Edition 106 66th 9–8
Expressive Vocabulary Test 101 79th 10–8
Clinical Evaluation of Language Fundamentals –
Fourth Edition
Concepts and following directions (10) 50th
Word structure (8) 25th
Formulated sentences (15) 95th
Word Classes
Receptive (10) 50th
Expressive (6) 9th
Total (8) 25th
Sentence structure (13) 84th
Understanding spoken paragraphs (8) 25th
Number Repetition
Forward (11) 63rd
Backward (10) 50th
Core language composite 100 50th
Receptive language composite 105 63rd
Expressive language composite 101 53rd
Language structure composite 106 66th
speech dysfluencies for the repetition task. On the subtest that assesses acquisition
of English morphological rules in a sentence-completion task (picture cues and
repetition allowed), she exhibited incorrect use of irregular plural nouns and past
tense verb forms, which can be indicative of word retrieval difficulties. The
irregular word form must be retrieved as a novel word, not following the expected
morphologic rules. On a subtest of verbal fluency for which she had to state as many
318 S.O. Carneol
items as she could per category in 1 min, Michelle passed criteria. Although motor
restlessness was again evident for this timed task, her responses were precise and
organized (i.e., named classes of animals).
Informal assessment revealed Michelle’s difficulty with verbal organization of
her thoughts and ideas during discourse. Word retrieval difficulties were frequent,
as evidenced by her word revisions and hesitations. She also tended to offer too
much information (i.e., unrelated details). Verbal mazing included phrase revisions
and fragmented utterances, which resulted in breakdowns in fluency, making it
more difficult to follow her train of thought. Despite these discourse problems,
her other pragmatic skills of turn taking, appropriate use of eye contact, request-
ing information, responding, predicting, and using repair strategies were judged to
be appropriate for her age.
Michelle demonstrated good articulation skills with the exception of a slight
frontal distortion of /s-z/. Intelligibility was good. Occasional paraphasias were
observed when she substituted a similar sounding word for an intended word (i.e.,
‘‘thirst graders’’–she does not have a /th/f/ substitution pattern).
In summary, Michelle once again demonstrated ‘‘average’’ receptive and ex-
pressive vocabulary and language skills on formal assessment measures. However,
qualitative differences in her ability to use these skills were evident across various
test tasks, resulting in ‘‘functional’’ language difficulties. Her ability to comprehend
spoken language broke down as the length and complexity of the spoken message
increased. She demonstrated significant difficulties with word retrieval and lan-
guage formulation especially when asked to respond with specific information or
verbalize more abstract concepts. These difficulties would be expected to impact
her academic and social performance. A higher order language disorder was
considered as a possible diagnosis. Previous psychological assessment indicated
slow processing speed, impulsivity, and inattentiveness. It was felt that the slower
processing speed could contribute to her inability to use her average language skills in
an effective and efficient manner. Furthermore, her previous diagnosis of ADHD
needed to be considered as another variable negatively impacting Michelle’s language
skills.
The question arose, Could all of this be related to an underlying higher order
language disorder and/or comorbid ADHD? Perhaps, but children with Attention
Deficit Disorders (with and without language impairments) often do poorly on the
Concepts and Following Directions, Sentence Formulation, and Word Association
subtests on the CELF-4. For Michelle, these particular tasks were relative strengths
despite her increased fidgetiness during the tasks. Michelle was also observed to
correct herself when she responded in error. This self-monitoring is often absent in
children with ADHD. On the basis of her need for repetition of auditory stimuli,
improved performance on tasks that had visual cues, and difficulty with language
formulation in discourse, further assessment of her Central Auditory Processing
skills was recommended before her diagnostic picture could be completed. She was
seen for subsequent audiological assessment 2 months later because of scheduling
conflicts.
The audiologist’s preliminary assessment indicated that Michelle’s peripheral

hearing and middle ear function were within normal limits, bilaterally. Speech
recognition in quiet was excellent for both ears. Acoustic reflexes were also within
normal limits. A different picture began to emerge as Michelle continued with the
Central Auditory Processing test battery (Table 29.12).
The generally accepted criteria for a (C)APD diagnosis is for a patient to score
2 standard deviations below the mean on at least two different test measures.
Michelle did so on the Auditory Figure Ground Subtest and Time Compressed
Words subtests on the SCAN. In addition, she scored in the borderline range on the
Goldman-Fristoe-Woodcock Test of Auditory Discrimination. A diagnosis of (C)
APD was given. The results from the audiology testing indicated that Michelle had
difficulty listening in noisy environments when speech was degraded. Her profile fit
the kinds of difficulties she had been experiencing over the years. (i.e., listening in
large group situations due to increased background noise and reverberation of sounds).
Listening would become even more difficult the further away she was from the
speaker. When Michelle was unfamiliar with the vocabulary or given few visual or
no contextual cues, she would be expected to have difficulty interpreting the message.
The amount of concentration she needed to expend could result in fatigue or inatten-
tiveness when listening. This fits with what her parents and teachers had been saying
since preschool.
Table 29.12 (Central) Auditory processing test battery and results
Tests Purpose Findings Interpretation
Dichotic digits test Binaural temporal Right ear: 92% Within normal
integration Left ear: 100% limits (WNL)
Goldman-Fristoe-Woodcock Word discrimination Quiet: 63% Quiet subtest:
test of auditory of similar sounding WNL
discrimination Noise: 30% Noise subtest:
‘‘borderline
normal’’
range
Pitch pattern sequence Temporal ordering, Right ear: 100% WNL
pitch perception, Left ear 100%
and pattern
recognition
Random gap detection test Temporal processing Random gap WNL
and temporal detection:
resolution 1.0 ms
SCAN-C: Test for auditory Understanding speech Standard score: 3 2 standard
processing disorders in in the presence of Percentile deviations
children – revised background rank: 1% below the
(auditory-figure ground multitalker noise mean for age
subtest)
Time compressed words Understanding speech Left ear: 80% 2 standard
when the signal is at 30% deviations
degraded compressed below the
Left ear: 80% mean in each
at 30% ear
compressed
320 S.O. Carneol
Review of previous evaluations and current language and audiological findings

indicated that Michelle had a (C)APD that was a major contributing factor to her
academic, psychosocial, and attentional problems. Out of all the formal assessments
she had undergone, the (C)APD battery yielded the most consistent findings. Al-
though a subclinical ADHD and/or an anxiety disorder could not be ruled out as
comorbid conditions, Michelle’s audiological profile could result in behaviors
associated with these diagnoses. It also offered a plausible explanation for the
language difficulties she exhibited. Reading comprehension was good; her listening
comprehension was not but improved with repetition and visual support. Written
expression was also good, but verbal expression was weak because of problems with
word finding and formulation. These difficulties often reflect gaps in listening
comprehension that make it difficult to get the gestalt of the message and apply
higher order thinking skills. It also could contribute to trouble recalling salient
details or use of specific words.
To better illustrate Michelle’s struggles, here is an analogy of listening to a speaker
with a strong foreign accent who is giving a lecture on a scientific topic that the
listener knows little about. The lecturer has good command of English, but because
the speaker’s speech is degraded by the accent, it takes more concentration on the
listener’s part to understand what is being said. If it is a large lecture room, the distance
between the speaker and the listener also takes away from the acoustic intensity of the
speech signal. The distance makes it difficult to read facial cues to supplement the
auditory message. The listener’s attention begins to wane after a while. It is even
harder to understand the subject matter because the speaker is using vocabulary words
related to the topic, of which the listener has little knowledge. The listener wishes that
the lecturer could speak slower and/or repeat what was said, provide a written outline,
give definitions, or at least provide a word list of the new vocabulary. That would make
the listening and understanding a little easier. If listening comprehension is improved,
recalling and retelling the novel information would be more efficient.
Intervention for (C)APD should be implemented as soon as the diagnosis is made
and should be comprehensive (Table 29.13). Per ASHA, ‘‘The accumulated auditory
and cognitive neuroscience literature supports comprehensive programming, incor-
porating both bottom-up (e.g., acoustic signal enhancement, auditory training) and
top-down (i.e., metacognitive and language) strategies’’ (2005, p. 11). However,
management for (C)APD is not ‘‘one size fits all,’’ and intervention should match the
individual’s strengths and needs. Some audiologists in the field use classifications
Table 29.13 Interventions for (C)APD

l Perceptual training
l Linguistic and cognitive strategies
l Compensatory strategies
l Environmental modifications
l Assistive technology alternatives
l Educational programming
systems to profile the type of (C)APD an individual has. The team that evaluated
Michelle did not. Rather, the team described the overall cognitive, emotional,
linguistic, and auditory profile to prescribe appropriate management.
Team recommendations were for Michelle to use an FM system in the class-
room to give her a clearer auditory signal by increasing the signal to noise ratio and
decreasing the detrimental effects of background noise on the signal. Classroom
and environmental modifications were also recommended (Table 29.14), including
improving classroom acoustics by using area rugs and wall hangings to reduce
sound reverberations and using slit tennis balls on the bottom of chairs to help
minimize the annoying and competing sound of furniture scraping on the tile floor.
Preferential seating should be given so that Michelle is away from extraneous noise
from the hallway, outside windows, or noisy heating and cooling systems and close
to the teacher, but not so close that she misses out on classmates’ comments.
Speech and language therapy was also recommended for auditory training in
auditory closure, discrimination, and memory and in establishing strategies to
improve active listening, self-cueing for word retrieval, and improving narrative
discourse skills.
Update
As a result of Michelle’s (C)APD test findings and recommendations, she underwent

an IEP reevaluation with her school district to determine eligibility for special
education support. During the school year, her teacher continued to express concern
over her lack of focus in the classroom, difficulty following verbal directions,
staying on task, and working independently. IEP testing was completed in Speech
and Language Impairment, Learning Disabilities, Hearing Impaired, and Other
Health Impaired (OHI). Psychological and educational testing ruled out a Learn-
ing Disability. Her cognitive and achievement scores were similar to previous
Table 29.14 Instructional modifications

l Signal or cue to student to pay attention
l Give information in short and concise steps
l Small group or individual instruction time
l Use of manipulatives, visual information, and written information (e.g., graphic
organizers) to supplement auditory information
l Preteaching of new concepts
l Frequent comprehension checks
l Extended time for tasks
l Peer note taker
l Give listening breaks
322 S.O. Carneol
findings. The school speech-language pathologist administered additional expres-

sive language testing but found that Michelle scored within the average range on
her narrative skills and verbal problem-solving abilities for the structured standar-
dized testing. Therefore, she did not meet criteria for direct services under Speech
and Language Impairment. The IEP team came to a unanimous agreement that
Michelle needed direct support at school vs. accommodations through a student
plan. An IEP was implemented under Other Health Impaired because her (C)APD
was a chronic medical problem that resulted in limited strength and vitality during
the school day. In addition, she met criteria for the Hearing Impaired program,
which would allow the use of the FM system. Consultation by the speech-language
pathologist would be provided as a related service.
Despite recognition of Michelle’s struggles, it took nearly 5 years to formulate
her much-needed IEP. A definitive diagnosis evaded numerous professionals, yet
all appreciated the functional difficulties she was experiencing. Perhaps it can be
argued that her parents kept shopping around until they received a diagnosis they
could accept. In this case, the parents’ persistence led to their child finally getting
the kind of support she needed at school. While terms such as auditory processing,
language processing, cognitive processing, and informational processing disorders
are frequently used in the educational arena, it may be a case of ‘‘the diagnosis is in
the eye of the beholder.’’ Because of the overlapping symptomology of (C)APD
and ADHD, the debate among psychologists, neuropsychologists, audiologists, and
speech-language pathologists continues. Nonetheless, it cannot be argued that a
‘‘processing disorder’’ of any kind has a negative effect on learning. Thorough
review of history, classroom and clinical observations, as well as comprehensive
assessment are all needed to provide a differential diagnosis that fits the child’s
strengths and weaknesses. In Michelle’s state, a diagnosis of a (C)APD does not
qualify a child for any particular special education service. Yet in her case it
better defined her profile, guiding professionals to provide appropriate support
and intervention.
Acoustic Reflexes Measurement of the reflexes generated by the middle ear muscles
in response to intense sound.
Central Auditory Nervous System Brainstem and cortical structures including the
eighth auditory nerve, cochlear nucleus, superior olivary complex of the pons or
reticular formation, inferior colliculus, medial geniculate body up to Heschl’s gyrus
in the left temporal lobe of the cortex.
(Central) Auditory Processing Disorder Difficulty in processing auditory informa-
tion in the central nervous system.
Discourse Conversational interaction and/or ability to understand and construct

monologues such as narratives, procedural texts, expository texts, persuasive
speeches, descriptions and others.
FM System A device that transmits acoustic signals by radio waves from the sound
source directly to a receiver worn by the listener.
Paraphasia An incorrect word is substituted for an intended or target word.
Peripheral Hearing System Physiological function of the outer ear, ear canal,
middle ear, and cochlea, which results in hearing acuity.
Pragmatics Social language use.
Signal to Noise Ratio A measure of signal strength relative to background noise.
Specific Language Impairment A developmental language disorder in the absence
of neurological, cognitive, sensory or social emotional deficits.
References
American Speech-Language-Hearing Association. (2005). (Central) Auditory Processing Disorders

[Technical report]. Available at http://www.asha.org/members/deskref-journls/deskref/default.
American Speech-Language-Hearing Association. (2005). (Central Auditory Processing Disorders—
the Role of the Audiologist [Position statement]. Available at http://www.asha.org/members/
deskref-journals/deskref/default.
Bellis, T. J. (2003). Assessment and management of central auditory processing disorders in the
educational setting: from science to practice (2nd Ed.). Clifton Park, NY: Delmar Learning.
Katz, J., & Tillery, K. L. (2005). Can Central Auditory Processing Tests Resist Supramodal
Influences? American Journal of Audiology, 14, 124–127.
Masters, M., Stecker, N., & Katz, J. (1998) Central auditory processing disorders: Mostly
management. Boston: Allyn and Bacon.
Richards, G. J. (2001). The source for processing disorders. East Moline, IL: LinguiSystems.
Rosenberg, G. (2002). Classroom acoustics and personal FM technology in management of auditory
processing disorders. Seminars in Hearing, 23(4), 309–318.
American Academy of Audiology. 11730 Plaza America Drive, Suite 3000. Reston, VA 20190.
Toll Free: (800) 222–2336 at http://www.audiology.org
American Speech-Language-Hearing Association. 10801 Rockville Pike, Rockville, MD 20852.
Toll free: (800) 638–8244 at http://www.asha.org
National Institute of Deafness and Other Communication Disorders at http://www.nidcd.nih.gov/
health/voice/auditory
Chapter 30
A Little of This, A Little of That: (Central)
Auditory Processing Disorder
Lisa R. Cox
Victoria was unusually quiet as an infant, seldom cooing or babbling. She spoke her
first words a bit late at 18 months and began combining two to three words at age
2½ years. Her speech was very difficult to understand, but her parents assumed that
her pronunciation would improve with age. An evaluation conducted by the local
school district to determine school readiness indicated that Victoria had profound
delays in articulation and phonological skills. She was subsequently enrolled in a
phonology program at age 4 years. The program was minimally effective; her
speech remained 80–85% unintelligible to everyone except her immediate family.
In kindergarten, Victoria struggled to learn letter sounds and seemed to have more
difficulty than her peers with following directions and answering questions. Her
classmates understood very little of what she said and constantly teased her because
she sounded ‘‘like a baby.’’ Both Victoria’s parents and teacher noticed that she
seemed sad and withdrawn.
Victoria’s speech was often monotone and she had a tendency to stress the
wrong syllables of words. Her parents began to wonder about a hearing impairment.
Shortly after her sixth birthday, Victoria was evaluated by an audiologist. Her
peripheral and middle ear function were normal in both ears. However, further
testing suggested that she had difficulty discriminating the subtle differences
between sounds in words, especially in noisy environments. She also had difficulty
understanding the meaning of words and phrases. Victoria was subsequently diag-
nosed with (central) auditory processing disorder ((C)APD). The audiologist
provided detailed recommendations including the use of an FM system and referred
Victoria to the school Individualized Education Program (IEP) team for an evalua-
tion. The IEP team concluded that Victoria met eligibility criteria to receive special
education services under the speech and language impairment classification. She
began using an FM system and received pull-out speech and language therapy
during the fourth quarter of her kindergarten year.
For first grade, Victoria was transferred to an ‘‘open-concept design’’ or ‘‘class-
room without walls’’ elementary school. At her new school, she continued to use the
FM system, received pull-out services for speech and language therapy, and was

326 L.R. Cox
enrolled in a specialized reading program. She made several new friends and her
self-esteem, mood, and grades initially improved. However, by the middle of
second grade, Victoria was distractible, had poor organizational skills, and her
grades began to drop. At home, Victoria’s parents described her as always on the
go, easily distracted, and somewhat impulsive. Homework was completed only
after prolonged tantrums and/or direct supervision from her mother.
At the time of referral in third grade, Victoria had significant difficulty keeping
her school materials organized in her desk and backpack; she frequently lost and/or
forgot to turn in assignments. Her parents described her speech as intelligible
approximately 50% of the time; the previous year they were able to understand
90% of her speech. Her classmates teased her almost nonstop about her speech
problems and often excluded her from activities. At recess, she typically played
with second graders. She was embarrassed by the size of her FM system and, not
surprisingly, had some compliance problems related to its use. A behavior manage-
ment plan was implemented during the second quarter of third grade, since which
time she used the system appropriately. Although Victoria was a generally happy
child, her parents were very concerned about her persistent underlying sadness.
Test Results
An evaluation conducted by the school district at the beginning of third grade

indicated low average intellectual abilities with relative weaknesses in verbal
skills and the ability to briefly hold and manipulate verbal information in mind
(Table 30.1). Academic achievement testing indicated average mathematical and
oral language skills, low average written language skills, and well below average

Wechsler Intelligence Scale for Children (Fourth Edition) Scorea Percentile
Verbal comprehension index 81 10th
Similarities (9)
Vocabulary (5)
Comprehension (6)
Perceptual reasoning index 98 45th
Block design (10)
Picture concepts (10)
Matrix reasoning (9)
Working memory index 77 6th
Digit span (7)
Letter–number sequencing (5)
Processing speed index 94 34th
Coding (9)
Symbol search (9)
a
Standard score, (scaled score), [T score], and {z score}.
30 A Little of This, A Little of That: (Central) Auditory Processing Disorder 327

Broad reading 72 3rd
Letter–word identification 81 10th
Reading fluency 65 1st
Word attack 79 8th
Broad math 93 33rd
Calculation 83 13th
Applied problems 105 63rd
Spelling 82 12th
Writing samples 97 43rd
Oral language 97 43rd
Story recall 120 91st
Understanding directions 106 65th
Picture vocabulary 85 15th
Oral comprehension 99 46th
Story recall delayed 98 44th
Academic fluency 72 3rd
Academic applications 93 33rd
Academic knowledge 92 29th
reading skills (Table 30.2). Throughout the testing at school, Victoria was fidgety
and easily distracted by outside noise (e.g., children going out for recess). Reading
appeared the most difficult for her. She seemed to rush through some of the reading
passages but did not give up easily.
Concerns about Victoria’s ongoing difficulties prompted her parents to request a
neuropsychological evaluation to assess several other important cognitive domains
that may have been contributing to her academic difficulties (Table 30.3). During
this evaluation, Victoria was friendly but reserved. Her interests seemed age
appropriate, though her conversation skills were somewhat below age expectations.
Her speech was monotone and her articulation was at times very difficult to understand.
She was inattentive, fidgety, and had difficulty with impulse control (e.g., she frequent-
ly attempted to touch testing stimuli at inappropriate times). When items became
challenging for her, she appeared to become somewhat upset and complained of
aches in her stomach; however, with encouragement from the examiner and her
parents, Victoria proceeded with testing with adequate effort and cooperation.
Victoria’s ability to sustain attention and inhibit impulsive responding during
structured tasks was intact. She had significant difficulty and frequently violated the
rules on a novel problem-solving task. Her ability to understand concrete, single
words was in the average range. In contrast, her overall language ability was in the
328 L.R. Cox
Table 30.3 Other functions: evaluation at age 9–4

Vigilance Task (9 min)
Correct 106 66th
Commission errors 104 61st
The Tower of London 65 1st
Clinical Evaluation of Language
Fundamentals – Fourth Edition
Receptive language 81 10th
Concepts and following directions (5) 5th
Word classes – receptive (8) 25th
Expressive language 83 13th
Formulated sentences (6) 9th
Word classes – expressive (9) 37th
Language memory 74 4th
Total language 78 7th
Word classes – total (8) 25th
Peabody Picture Vocabulary Test – 92 30th
Third Edition, A
Elision (7) 16th
Blending words (8) 25th
Phonological memory 79 8th
Memory for digits (6) 9th
Nonword repetition (7) 16th
Rapid naming 88 21st
Rapid digit naming (8) 25th
Rapid letter naming (8) 25th
Attention Deficit Hyperactivity
Disorder Rating Scale – Fourth Edition
Home Version
Total 89th–90th
Hyperactivity–impulsivity 85th–88th
School Version
Total 80th–84th
Hyperactivity–impulsivity 50th
Inattention 88th
Parent
Social problems [64] 92nd
(continued)

Aggressive behavior [65] 93rd
Somatic complaints [50] <50th
Inhibit scale [60] 89th
Shift scale [60] 56th
Emotional control scale [50] 55th
Metacognition index [61] 83rd
Initiate scale [46] 44th
Working memory scale [62] 86th
Plan/organize scale [65] 91st
Organization of materials scale [66] 88th
Monitor scale [58] 80th
well below average range with similarly developed receptive and expressive lan-
guage skills. She had the most difficulty on tasks assessing her ability to repeat
sentences and follow multiple-step commands. It is important to note that both of
the latter tasks were particularly sensitive to variations in attention. Her phonologi-
cal awareness (segmentation, deletion, and reintegration of orally presented words)
and rapid naming (of visually presented digits and numbers) were low average,
while her phonological memory (for orally presented nonwords or for series of
orally presented digits) was well below average. Responses on parent and teacher
questionnaires indicated some difficulties with sustaining attention. Responses on
parent questionnaires indicated that Victoria experienced somatic symptoms (e.g.,
stomachache, headache) at a level slightly higher than her peers, had some difficul-
ty with acting out behaviors, and significant difficulties with planning, problem
solving, and organizing.
Victoria’s speech and language development had been atypical since infancy. Her
persistent difficulty with articulation and poor intonation or prosody suggested
developmental apraxia of speech and warranted further evaluation by a speech
330 L.R. Cox
and language pathologist. Her language skills consistently lagged behind that of her
peers, were significantly lower than her nonverbal intellectual abilities, and had a
negative impact on her ability to acquire early reading skills. Victoria’s teachers
and parents repeatedly expressed concerns about distractibility, poor impulse con-
trol, motor restlessness, and poor organizational skills. Her neuropsychological
profile was notable for difficulties on tasks particularly sensitive to fluctuations in
attention.
While Victoria clearly exhibited some hyperactive, impulsive, and inattentive
symptoms, the overlap between (central) auditory processing disorder and atten-
tion deficit hyperactivity disorder (ADHD) made it difficult to determine whether
she met diagnostic criteria for one or both disorders. For this reason, a separate
diagnosis of ADHD was deferred. It was felt likely, however, that deficits in
attention and executive function contributed to her academic underachievement.
From a neuropsychological perspective, Victoria showed global language impair-
ments that went beyond auditory processing and attention deficits, and thus were
more accurately characterized as a higher-order language disorder, specifically
mixed receptive and expressive language disorder. From a psychosocial per-
spective, Victoria was a sensitive young girl who had experienced social interaction
difficulties and low self-esteem as a result of her speech and language problems.
She had a longstanding history of persistent underlying sadness and the amount of
somatic complaints she reported was suggestive of increased stress. She was felt to
be at increased risk for a mood and/or anxiety disorder.
Due to Victoria’s weakness in comprehending and following through with
directions, caution should be exercised to avoid giving her multiple-step com-
mands. Most directions should be presented very clearly, with an opportunity for
her to complete individual steps. When lengthier or more complex directions are
necessary, she should be asked to repeat them. She also may benefit from direct
instruction and practice in learning to better attend to and follow directions.
Victoria’s auditory processing and listening comprehension may be addressed
with explicit instruction in sequential, temporal, location, and conditional concepts
(e.g., next to, between, before, after, under, first, if, then). The use of concrete,
visual materials during these activities will help Victoria to both understand and
remember the concepts. She should have continued instruction in receptive and
expressive vocabulary and in adverb, adjective, and verb tense usage in oral
language activities. Again, simultaneous visual and tactile processing during
these activities will be beneficial. School staff can practice these language skills
in oral language activities with Victoria, for instance, conversations; show-and-tell
sessions; puppetry; dramatic play; telephoning; reporting; interviewing; telling
stories, riddles, or jokes; and role-playing. Other possible oral language activities
include ‘‘tell me how. . .’’ activities, helping her describe the attributes of objects,
and finishing stories (i.e., beginning a story and letting her finish it).
Work on traditional phonics skills should be emphasized in Victoria’s reading
program. The most effective phonological development components in reading
research at this time involve systematic review of basic phonics elements such as
letter sounds when needed, practice in segmenting short words in print, blending
methods such as orally stretching out the sounds in words, contextual application of
analytic phonics methods such as word families, and an integration of reading and
writing activities. Reading decoding work should focus on reading material that is
at Victoria’s instructional level for word recognition, which was second grade
according to testing at the school the previous fall.
Victoria should also be taught reading strategies to enhance comprehension.
Some examples include prereading questions at the end of chapters, previewing
pictures in the story, and thinking in advance about what the story may be about.
She should be cued to personalize the content when possible by thinking about her
own knowledge of the types of characters, settings, or events described. Skimming
major section headings before beginning to read would be helpful. She should stop
periodically during reading to quiz herself on the main ideas and to attempt to
abstract the concepts from the specific content of what she has read. Particularly
with difficult or longer material, Victoria should make outlines to aid later study as
well as conceptual reorganization of the material. She will need to be taught to
apply different reading and comprehension strategies to different material (e.g.,
reading fiction for English vs. reading expository text for science) and to actively
think about and utilize structures in text. For example, within narrative text,
Victoria should learn that the story will contain a setting, one or more characters,
some type of problem, events, and some solution. Within expository text, she can
be prompted to look for a general topic, one or more main ideas, and some
specific details about the main ideas. Comprehension can be facilitated by using
story mapping strategies immediately following reading. She should monitor her
reading speed and slow down when faced with more difficult or less familiar
material.
In everyday conversation, Victoria’s parents should encourage her to describe and
detail stories for them, either of what she has read or what has happened to her during
the day. They should make sure that these activities are fun and rewarding for Victoria,
and they can make a game out of how many adjectives, adverbs, or relational concepts
(e.g., if, then, next, before) she uses. They should also model these language skills
for her by describing experiences or detailing stories back to her.
Victoria may need more individualized assistance for a time to learn to imple-
ment particular strategies to guide her written language production. Ideally, this
one-on-one assistance could be faded as Victoria becomes more independent, and
reinforcement could be added for using the strategies with reduced cuing from
adults. Written products will be enhanced by following a process of first brain-
storming about the assigned topic, then jotting down ideas generated by this,
beginning to sequence these ideas, adding details to the rough outline, and then
proceeding to inserting verbs and transition words to form a prose product. This can
most efficiently be done using a word processor, although it also could be com-
pleted by making a map or idea grid before writing. Next, the product should be
revised, including presequencing if necessary. Only nearer to the end of the process
should Victoria proofread spelling, capitalization, punctuation, and word usage
332 L.R. Cox
(grammar) in the writing. Reading the composition aloud at this point also can help
to illuminate errors in grammar and punctuation.
Victoria needs further instruction in many aspects of written language, including
spelling, sentence construction, paragraph structure, and organization of longer
written products. It is often most helpful to have children focus on spelling words
that are integrated with their reading curriculum and/or words that are grouped
together in phonologically related word families. The use of a ‘‘word wall’’ would
be helpful for Victoria. In classroom application, this consists of a list of words on
the wall, grouped according to their beginning letters alphabetically, to which
children can refer when doing written work. Children are expected to correctly
spell all words on the word wall in their written work, and words are gradually
added as they are taught in the curriculum. Easily confusable similar words (e.g.,
what, when) are printed on different colored paper and cut out with the outline
shape closely following the configuration of the letters in the word. This type of
system can be individualized with a chart on the child’s desk if the child is working
at a lower level than the overall class or if this type of system is not usable in the
whole class format. In the long run, the goal should be for Victoria to reliably spell a
circumscribed list of commonly used words.
The following may help Victoria improve her organization and planning:
providing Victoria with clear places for necessary materials, such as color-coded
subject folders, and reinforcing use of these organizers; breaking longer assign-
ments or directions into parts, perhaps providing a checklist that Victoria can mark
following completion of each step; providing guided practice for Victoria in
planning how to complete assigned tasks (what is needed, how to break tasks into
manageable parts, estimating time needed for each part); providing other organiza-
tional checklists for different needs, such as steps to get ready to go home after
school; and reminding Victoria at the end of the day about what she needs for home
and the next day.
Victoria’s difficulties with tasks requiring abstract reasoning and logical prob-
lem solving suggest that she may have difficulty when faced with complex, novel
tasks. Specifically, she may find it difficult to analyze the requirements of a task,
thereby making it difficult to apply effective strategies toward a solution. Because
of this, the acquisition of novel cognitive skills such as higher level academics may
prove to be frustrating for Victoria. When faced with such novel situations, she
should attempt to determine the requirements of the situation and subdivide them
into a series of steps. Writing these down on paper is likely to be particularly
helpful. She then will be in a better position to formulate a plan for approaching the
new task.
Victoria’s parents and teachers should closely monitor her symptoms of depres-
sion and anxiety. If her mood appears to be impacting her daily functioning,
psychological counseling is strongly recommended.
Taken together, Victoria’s case illustrates the diagnostic conundrum that (C)
APD can present when it coexists in children with speech–language impairment,
developmental disabilities, ADHD, learning disabilities, anxiety and/or mood
disorder. While diagnostic clarity is important, the development of an appropriate

education plan is paramount.
Attention. Includes engaging, sustaining, selecting, and disengaging attentional

focus.
Executive functioning. The abilities necessary to plan, organize, and control beha-
viors. Attention and executive functioning require similar skill sets and rely on
overlapping neural circuitry.
ADHD. Characterized by disturbances of age-appropriate impulse control, sus-
tained attention, rule-governed or goal-directed behavior, activity level, consisten-
cy of performance and executive mental functions (e.g., planning, organization and
adaptive shifting of mental set).
Mixed receptive–expressive language disorder. Impairments in both the under-
standing and use of language.
References
American Speech–Language–Hearing Association. (2005). (Central) auditory processing disor-

ders (Technical report). Available at http://www.asha.org/members/deskref-journls/deskref/
default.
American Speech–Language–Hearing Association. (2005). (Central) auditory processing disor-
ders – The role of the audiologist (Position statement). Available at http://www.asha.org/
members/deskref-journals/deskref/default.
Bellis, T. J. (2003). Assessment and management of central auditory processing disorders in the
educational setting: From science to practice (2nd ed.). Clifton Park, NY: Delmar Learning.
Katz, J., & Tillery, K. L. (2005). Can central auditory processing tests resist supramodal influ-
ences? American Journal of Audiology, 14, 124–127.
Masters, M., Stecker, N., & Katz, J. (1998). Central auditory processing disorders: Mostly
management. Boston: Allyn and Bacon.
Parthasarathy, T. K. (Ed.). (2006). An introduction to auditory processing disorders in children.
Mahwah, NJ: Lawrence Erlbaum Associates.
Richards, G. J. (2001). The source for processing disorders. East Moline, IL: LinguiSystems.
Rosenberg, G. (2002). Classroom acoustics and personal FM technology in management of
auditory processing disorders. Seminars in Hearing, 23(4), 309–318.
334 L.R. Cox
American Academy of Audiology. 11730 Plaza America Drive, Suite 3000, Reston, VA 20190.
Toll Free: (800) 222-2336 at www.audiology.org
American Speech–Language–Hearing Association. 10801 Rockville Pike, Rockville, MD 20852.
Toll free: (800) 638-8244 at www.asha.org
National Institute of Deafness and Other Communication Disorders at www.nidcd.nih.gov/health/
voice/auditory
NICHCY, National Dissemination Center for Children with Disabilities at www.nichcy.org
Chapter 31
A Hunt for the Elusive Neuropsychological
Impairment: Conversion Disorder
‘‘Some of Dean’s other doctors believe that psychological issues and our family situation is
affecting his neurological problems. Are you in agreement, Doctor?’’ ‘‘In a word, yes.’’
Thus began the case of the elusive neuropsychological impairment.

Approximately 2 years prior to his neuropsychological evaluation, Dean was
jumped by a friend and hit several times in the head. He fell and reportedly hit the
side of his head on a rock. According to his parents, there was evidence of blood on
the rock. Dean’s recollection was consistent with his parents’ report. He could not
recall what side of his head was hit. Upon falling, he got up, noticed blood on a rock
and felt a lot of blood on his face. He was able to stumble home, and was
subsequently taken to the local emergency room. Neuroimaging conducted at the
hospital was unremarkable, and after several hours of observation Dean was dis-
charged home. However, the next day, he reportedly lost his color vision and had
significant fine motor difficulties to the point that he could not use utensils because
his hand would shake so violently. In addition, Dean’s arms would spontaneously
swing uncontrollably, knocking over plates and bowls. Magnetic resonance imag-
ing (MRI) of the brain conducted about a week after this altercation showed no
evidence of traumatic injury or intracranial hemorrhage.
Prior to this event, Dean had no significant cognitive complaints, and he was
considered an average student. Cognitively, since his injury, Dean was having
extreme difficulty maintaining focus on school tasks and projects because of
stamina issues. It was also Dean’s parents’ perception that his attention had become
progressively worse. However, his parents noted that he had no problems focusing
on video games for long periods of time. His memory was reportedly significantly
poorer, and at times he was not oriented to time and place. His chronic fatigue was
so debilitating that he could not attend school full-time. Consequently, he was
taking courses through an Internet-based home school program. It was his father’s
perception that Dean’s unorthodox schooling was affecting his overall academic
achievement.

Prior to his injury, Dean had multiple medical issues that hindered making sense
of his current complaints. According to his father, approximately 2–3 days after
birth Dean began to demonstrate rhythmic arm and leg twitching that was diag-
nosed as a seizure disorder. He was subsequently put on an antiepileptic medica-
tion, but he has not had a verifiable seizure since he was 3 months of age. He did
undergo long-term EEG monitoring a year before neuropsychological testing, after
an episode when he was unresponsive, but no clinical seizures were captured and a
provisional diagnosis of nonepileptic seizures (commonly known as pseudosei-
zures) was made. When he was 11-years old, Dean began to complain of migraines
characterized by bitemporal and frontal pain. These headaches increased in fre-
quency and duration, resulting in Dean missing 6 months of school when he was in
eighth grade. After this episode, his migraines decreased in frequency and intensity
but then escalated to daily headaches since his injury. In terms of other medical
history, Dean was diagnosed with hearing loss as a 12-year old. His hearing issues
spontaneously resolved within the year, without any medical intervention. At the
time of the assessment, Dean was taking amitriptyline and melatonin. He also
carried a diagnosis of myofascial pain syndrome. Multiple work-ups through the
neurology clinic, allergy clinic, and physical medicine and rehabilitation service
found no specific cause for Dean’s chronic conditions.
In Dean’s psychosocial history, his father reported numerous problems. Dean’s
siblings had a myriad of mental health difficulties, learning disabilities, and
suspected neurological disorders. His parents also had mental health issues,
namely depression. However, Dean’s father did not think his son was strug-
gling with depression or anxiety. There was a great deal of stress in the family
because of financial strain and multiple failed businesses. They had no mode of
transportation, and Dean’s parents and three siblings were living in a two-bedroom
apartment.
At the time Dean’s father requested the neuropsychological evaluation, both of
Dean’s parents reported that he had diffuse and wide-ranging cognitive and aca-
demic difficulties. A broad approach was taken to ascertain his neuropsychological
profile for two main reasons. First, in the absence of any significant previously
identified neurological abnormality, it was important to screen all the major cogni-
tive domains (e.g., intellectual functioning, attention, memory) to identify any
potential subtle or underlying deficits not identified during multiple neurological
and medical examinations. The second reason was more conceptual. Neuropsy-
chologists often are called to ‘‘rule in’’ areas of cognitive weakness in patients, but
sometimes (such as Dean’s case) what becomes equally important is ‘‘ruling out’’
cognitive dysfunction. The purpose of excluding dysfunction is to then hypothesize
about other potential explanations for parent and patient complaints.
The test protocol focused initially on intellectual functioning and academic
achievement. Further testing addressed memory, attention and executive function,
and screening of language and visual-spatial abilities. Given his reported fatigue,
Dean was assessed over the course of two sessions.
31 A Hunt for the Elusive Neuropsychological Impairment: Conversion Disorder 337
Test Results
At his first appointment, Dean presented as a shy adolescent with minimal emo-
tional expressiveness. He did not seem to be overtly depressed or anxious; rather, he
was ‘‘flat.’’ Although he never initiated conversation, he readily engaged in sponta-
neous discussion about a myriad of topics. He had no overt fine motor difficulties,
but he remained in a wheelchair throughout the testing session because he had great
difficulty walking. In contrast, during his second appointment, Dean was able to
walk to the testing area and did not complain of pain as he moved around. His father
reported, ‘‘One day he just decided to get up and walk. He is also back to riding his
bike.’’ Dean was also more conversational and emotionally expressive.
In his approach to testing, there was no significant evidence of inattention,
distractibility, motor restlessness, or impulsivity across both sessions. He was polite
and his demeanor was pleasant, even on tasks where he had difficulty. He was
cooperative and persistent for all tasks, and there was no evidence of waxing and
waning of effort throughout the entire evaluation.
In talking with Dean, he was not concerned at all about his reported cognitive
decline since his fight. He did note that his cognitive issues made attending school
difficult for him but that he felt he was making adequate progress in school. He did
not report significant levels of depression or anxiety. Interestingly, and in stark
contrast to his father’s report, he denied any chronic stress or difficulty at home.
Dean’s overall intellectual ability was average with no significant discrepancy
between his average intellectual indices (Table 31.1). A similar pattern was seen in

Wechsler Adult Intelligence Scorea Percentile
Scale – Third Edition
Verbal comprehension 103 58th
Information (11)
Similarities (11)
Vocabulary (10)
Working memory 92 30th
Letter-number sequencing (11)
Arithmetic (8)
Digit span (7)
Perceptual organization 99 47th
Picture completion (11)
Block design (9)
Matrix reasoning (10)
Processing speed 93 32nd
Coding (8)
Symbol search (10)
Verbal IQ 97 42nd
a

Woodcock Johnson Tests of Score Percentile
Achievement – Third Edition
Broad reading 93 32nd
Passage comprehension 97 43rd
Word attack 82 12th
Broad math 85 16th
Calculation 83 13th
Applied problems 89 23rd
Math fluency 89 23rd
Spelling 81 10th
Writing samples 101 53rd
Academic applications 87 19th
Academic fluency 92 29th
terms of academic achievement. Reading was average. Mathematics and written

language were relative weaknesses but still within broad normal limits (Table 31.2).
His performance on other neuropsychological measures was generally consistent
with that seen on measures of intelligence and academic achievement. Attention
and executive function abilities were low average to solidly average. Language and
visual-spatial screening was within normal limits. Memory testing was solidly
average for immediate and delayed recall of paragraph-length stories and word
lists. He demonstrated an extremely well-developed ability to organize and encode
information to aid retention. Dean’s greatest weakness was in fine motor speed and
dexterity, though his scores were still low average (Table 31.3).
As previously mentioned, Dean did not seem to exaggerate his cognitive diffi-
culties by purposefully performing poorly during testing. A commonly used quan-
titative measure of effort corroborated the clinical impression that Dean put forth
adequate effort during the evaluation. Dean easily and quickly completed this
specific task with no errors.
Results from the assessment indicated average global intellectual ability with
generally commensurate academic skills development. Dean’s performance on
measures of attention, executive function, language, visual-spatial, and memory
functions was consistent with his intelligence and academic achievement. Notably,
there was no evidence of significant impairment in any tested domain.

Right hand 81 10th
Left hand 80 10th
Trailmaking Test
Part A 97 42nd
Part B 82 12th
Categories >16th
Perseverative responses 89 23rd
Perseverative errors 88 21st
Conceptual level responses 30th
Learning to learn >16th
Boston Naming Test 91 27th
Benton Judgment of Line Orientation Test 96 40th
Wechsler Memory Scale – Third Edition
Logical Memory
I (12) 75th
II (11) 63rd
California Verbal Learning Test – Second
Edition
Short-delay free recall {1} 84th
Short-delay cued recall {1} 84th
Long-delay free recall {1} 84th
Long-delay cued recall {0.5} 69th
Semantic clustering {2.5} >99.99th
Delayed recognition {0.5} 31st
Clinical neuropsychology and related medical disciplines lack a consensus about

what constitutes a mild brain injury. Such entities as the American Academy of
Pediatrics (1999) and the American Congress of Rehabilitation Medicine (1993)
have opined their respective algorithm of what constitutes mild injury. Diagnostic
systems such as the International Classification of Diseases (World Health Organi-
zation, 1992) also provide criteria. There exist points of overlap and distinction
among these various groups and agencies that complicate clinicians’ ability to
understand and diagnose mild head injury. Nevertheless, in reviewing criteria, it
would appear that Dean’s brain injury was mild.
He did not have a skull fracture, and two different forms of neuroimaging (each
appropriately selected in light of time since injury) conducted on the day of and a
week after his injury were normal. It was also thought that Dean’s loss of con-
sciousness was less than 20 min. His rapid reacquisition of place orientation and
lack of amnesia for events at the time (i.e., he was able to remember his home
address and walked home; he reported aspects of the fight) provided further
preliminary evidence of a mild traumatic brain injury. Finally, there was no deficit
in his neuropsychological profile. Given the nature and extent of this injury, one
would not predict or expect long-standing cognitive or academic difficulties or
decline in these areas.
Dean’s reported cognitive and academic difficulties were not thought to be related
to postconcussive syndrome (PCS); rather, more complex and, to some extent
preexisting, psychiatric issues appeared involved. PCS is a somewhat controversial
syndrome characterized by impairment in neuropsychological functioning accom-
panied by at least three physical complaints that have persisted for at least 3 months
subsequent to a reported closed head injury (American Psychiatric Association,
2000). Dean endorsed some features of the syndrome, namely fatigue, headache,
and sleep difficulties. However, the constellation of symptoms associated with PCS
generally persists for a matter of weeks or months and are not typically observed
years after a mild head injury. In addition, there was no consistent and compelling
evidence of cognitive impairment. Finally, and arguably most importantly, Dean’s
quick remission of ambulation difficulties, across testing sessions, in the absence of
any medical or neurological intervention is not indicative of systematic and chronic
neurological pathology.
A brief clinical interview with Dean revealed no compelling evidence of depres-
sion, anxiety, psychotic thought process, or posttraumatic stress. In contrast to his
father’s report of chronic stress in the family concerning health and finances, Dean
reported no pressing family concerns. He displayed a rather nonchalant attitude
about his reported cognitive and medical complaints. The combination of his
‘‘unawareness’’ of family strife coupled with his relative lack of concern about
his reported symptoms was reminiscent of la belle indifference. In the absence of
other medical or neurological etiologies, the most parsimonious explanation of
Dean’s presentation was thought to be related to psychological factors.
On the basis of his presentation and neuropsychological test results, Dean did
appear to meet criteria for Conversion Disorder (American Psychiatric Associa-
tion, 2000). In Conversion Disorder, individuals present deficits in voluntary or
sensory functions that suggest a neurological or other general medical condition.
The constellation of symptoms cannot, after appropriate investigation, be fully
explained by a medical or neurological condition, substance abuse, or culturally
sanctioned behavior. Psychological factors are judged to be associated with the
condition because the initiation or exacerbation of symptoms coincides with the
emergence of psychosocial stressors. Exclusion criteria include the ability to
explain the individual’s presentation through medical conditions or symptoms not
limited to pain or sexual dysfunction.
One main recommendation came from the evaluation: Psychotherapy could
provide Dean an environment to explore the relationship between psychosocial
stress and physical functioning. Counseling could also provide a supportive and
nurturing environment for him to identify his emotional state and learn effective
coping strategies to use when he becomes distressed. In addition, counseling could
provide Dean’s parents with a better understanding of the nature of his behavioral
issues and an opportunity to learn strategies to facilitate his psychological and
emotional development. Dean should be in psychotherapy at least weekly and

treatment may be long-term.
Was the full neuropsychological assessment needed? Probably not absolutely,
but it did increase the clinician’s degree of confidence in ruling out alternative
explanations to the Conversion Disorder diagnosis. This could be seen as the
beginning of a psychotherapeutic process, in which a qualified professional care-
fully considered the cognitive complaints presented by an important member of
the system (Dean’s father) whose ongoing support will certainly be needed to make
treatment progress. The role of the neuropsychological assessment in cases such as
this probably reduces to a post-hoc analysis of what elements in the overall medical
and psychiatric care were necessary and sufficient in the end.
Conversion Disorder A condition that presents as an alteration or loss of a physical

function suggestive of a physical disorder; however, no medical or neurological
etiology can be identified. Consequently, such a presentation is presumed to be the
expression of an underlying psychological conflict or need.
La Belle Indifference A relative lack of concern about the nature or implications of
symptoms manifested on the part of the patient.
Myofascial Pain Syndrome Pain and inflammation in the body’s soft tissues. It is a
chronic condition that affects the fascia (connective tissue that covers the muscles).
Myofascial pain syndrome may involve either a single muscle or a muscle group.
Postconcussive Syndrome Common, albeit controversial, sequelae of traumatic
brain injury. It is a symptom constellation that includes headache, dizziness,
psychological symptoms, and cognitive impairment.
Nonepileptic Seizures Commonly known as pseudoseizures. A disorder where the
patient presents with neurological signs of a seizure disorder without the consistent
clinical behaviors of seizure or abnormal EEG correlates. The etiology of pseudo-
seizures is thought to be psychological and resulting from stressors in the indivi-
duals’ life.
References
American Academy of Pediatrics (1999). The management of minor closed head injury in
children. Pediatrics, 104, 1407–1415.
American Psychiatric Association (2004). Diagnostic and statistical manual of mental disorders
(4th ed., text revision). Washington DC: American Psychiatric Association.
Coleman, R. D., Rapport, L. J., Millis, S. R., Ricker, J. H., & Farchione, T. J. (1998). Effects of
coaching on detection of malingering on the California Verbal Learning Test. Journal of
Clinical and Experimental Neuropsychology, 20, 201–210.
Delis, D. C., Kramer, J. H., Kaplan, E., & Ober, B. A. (2000). California verbal learning test
second edition, adult version. San Antonio, TX: Harcourt Assessment Company.
Kirmayer, L. J., & Taillefer, S. (1997). Somatoform disorders. In S. M. Turner & M. Hersen (Eds.),
Adult psychopathology and diagnosis (pp. 333–383). New York: Wiley.
McCrea, M. A. (2008). Mild traumatic brain injury and postconcussion syndrome: The new
evidence base for diagnosis and treatment. New York: Oxford University Press.
Mild Traumatic Brain Injury Committee of the Head Injury Interdisciplinary Special Interest
Group of the American Congress of Rehabilitation Medicine. Definition of mild traumatic
brain injury. Journal of Head Trauma Rehabilitation, 8, 86–87.
Millis, S. R., Putnam, S. H., Adams, K. M., & Ricker, J. H. (1995). The California Verbal Learning
Test in the detection of incomplete effort in neuropsychological evaluation. Psychological
Assessment, 7, 463–471.
Sweet, J. J., Wolfe, P., Sattlberger, E., Numan, B., Rosenfeld, J. P., Clingerman, S., & Nies, K. J.
(2000). Further investigation of traumatic brain injury versus insufficient effort with the
California Verbal Learning Test. Archives of Clinical Neuropsychology, 15, 105–113.
World Health Organization (1992). The ICD-10 classification of mental and behavioural disor-
ders: Clinical descriptions and diagnostic guidelines. Geneva: World Health Organization.
Chapter 32
A Mystery of Perplexing Symptoms:
Neuropsychological Assessment in a
Case of Dysautonomia
Robert F. Newby and Safwan S. Jaradeh
Poor misunderstood Laura! Preschool staff filled out referral forms about her
struggle with ‘‘physical and verbal control when with others’’ and ‘‘swaying
attention.’’ Her kindergarten teacher felt that she actually enjoyed disturbing others,
although Laura’s parents suspected that this teacher’s status as the oldest and most
dominant in the traditional culture at her small rural school might have been
coloring her view of students who did not sit and do their work quietly. Were her
periods of apparent fatigue really signs of becoming less interested in the work?
Elementary grade staff debated if she might be a ‘‘tactile/visual learner’’ rather than
an ‘‘auditory learner.’’ Things became particularly perplexing when she started
showing quirky medical features, such as rapid weight shifts, losing her sense of
smell at age 6, and being diagnosed with asthma and then unexpectedly never
having asthma symptoms again after a 10-day course of steroids.
Pediatric neuropsychologists occasionally see such confusing symptom patterns,
often combining physical and behavioral features, often for year after year, that are
eventually discovered to have a low-prevalence neurological disorder that helps
knit things together. Laura’s break came at age 8, when careful neurological
evaluation uncovered a diagnosis of dysautonomia. Laura’s main neurological
issues at that time included headaches, dizziness, intermittent vomiting, chronic
constipation, fatigue, and weight changes. The cause of these symptoms was not
initially apparent, so the neurologist began with a detailed medical history.
Laura was born at 29 weeks gestation and delivered via cesarean section because
of transverse lie. Her birth weight was 3 pounds and 10 ounces, with Apgar scores
of 5 at 1 min and 8 at 5 min. She also had breathing difficulties at birth and was on a
ventilator for 3 days. During the first 2 years of her life, she developed reflux and
was treated with cisapride. Her motor development was unremarkable, and she sat
and walked at the expected stages. She was toilet trained before age 3. However, at
age 5, she developed chronic constipation and intermittent fecal soiling. She also
had several issues with carsickness, and then started having headaches followed by
vomiting; these episodes typically resolved after sleep. Laura also sometimes felt

344 R.F. Newby, S.S. Jaradeh
dizzy and tight in the chest when she got up abruptly, which was worse when she
was having a headache. She did not have loss of consciousness, but she felt almost
faint when headache and vomiting occurred together.
When Laura started physical education classes at school, she enjoyed many
activities, but she showed excessive muscular fatigue even after 20 minutes
of exercise. The family also noticed that during a vacation, Laura could keep up
with her siblings only for the first hour or so, and her endurance declined further
when the day was warmer. One of the most unique symptoms when she first
presented for neurological evaluation consisted of rapid weight shifts, despite a
well-monitored diet.
Laura had a detailed metabolic workup, which was negative. Chromosomal
studies to check for Prader-Willi and Angelman syndrome were normal. She had
normal creatine kinase (CK), thyroid function tests, lactate and pyruvate, porphyr-
ins, biotinidase, and carnitine profile. An endocrinologist did not find evidence for
mastocytosis. An evaluation by an allergist at that time was also negative. An
electromyography (EMG) study was normal, and did not reveal any neuropathy
or myopathy. A sleep study was abnormal and showed a mild degree of obstructive
sleep apnea and an excessive number of periodic leg movements during sleep. An
abdominal and pelvic computed tomography (CT) scan showed mildly dilated
small bowels and colon. Various endoscopic biopsies (from the esophagus, stom-
ach, duodenum, ileum, and colon) were normal. Magnetic resonance imaging
(MRI) of her brain, cervical, thoracic, and lumbosacral spine was normal. On
neurological examination, she was alert and oriented and appeared quite happy as
a child. However, her mood was quite labile. She was mildly overweight. She had
no dysmorphic features. While the neurologist was interviewing her mother, she
kept climbing to the exam table from the floor several times on her own. Her cranial
nerve examination showed decreased smell but no other abnormalities. Her strength
testing was intact. Her deep tendon reflexes were present and symmetric. Her
sensory examination was normal. Her plantar response was flexor bilaterally. Her
cerebellar examination was intact. She was able to stand up from the knee position
without difficulties. Her gait was normal, without pelvic waddling. Laura had
autonomic testing, which showed patchy decrease in the sweating over her trunk,
fingertips, and toes. The sweating was normal over her forehead. Her tilt test
showed significant orthostatic tachycardia (her heart rate increased by 57 beats in
the first 10 minutes of tilt), which became associated with her symptoms of chest
tightness and dizziness. The symptoms persisted for the entire duration of the tilt
test (20 minutes), and then she developed a typical episode of headache after she
was tilted back. The valsalva maneuver and heart rate variability to deep breathing
were intact. The clinical impression was that of mild dysautonomia with orthostatic
intolerance, migraine, and vomiting. The patient’s dysautonomia was also felt
to explain her constipation and her significant fatigue. The fluid shifts could also
account for her rapid fluctuations of weight.
Treatment began at 8 years of age with hydration and low-dose pyridostigmine
to improve her vasomotor tone. At her follow-up visit 3 months later, she was
markedly improved. Her mother thought that her muscle tone and endurance were
32 A Mystery of Perplexing Symptoms 345
much better. Her constipation was also better, and the frequency of her headaches
decreased significantly. Because her exercise tolerance became better, her physical
conditioning improved, and her episodes of dizziness and chest pain decreased
significantly. Of interest, Laura’s mother also commented on improvement in her
attention span and emotional lability. The benefits were sustained at subsequent
follow-ups at 6 months and 1 year later, although fluctuations in symptoms ree-
merged at times, requiring medication adjustment.
Laura’s neurologist referred her for neuropsychological evaluation at age 11,
during the spring of fifth grade, because teachers wondered about the possibility of
Attention Deficit Hyperactivity Disorder (ADHD), and the neurologist also wanted to
check for other cognitive deficits that might be episodically associated with her
dysautonomia. She had been in psychotherapy off and on from the time of her
neurological diagnosis, working on issues such as aggression turned inward in relation
to her long period of insufficiently explained medical problems, passivity interacting
with her parents’ anxieties and control messages, and often-critical teachers. The
therapist did not have the impression that Laura showed classic ADHD, even though
she could go so deep inside herself at times that she could neglect to attend to concrete
things happening at the moment and thus not remember them later. Laura had shown
strong growth in academic skills despite the disruption of fatigue and headaches, and
the result from her standardized group-administered testing at school was average to
above average, so a learning disability appeared unlikely.
A brief neuropsychological assessment was planned to focus on overall cognitive
abilities, attention, and executive mental functioning. Then a series of extraneous
events that can delay these things came up, including the birth of a younger sibling,
the wish to not have Laura miss school for a testing appointment during the last few
weeks of school, and scheduling problems in the clinic. In the meantime, behavior
rating questionnaires were collected at home and school, she finished the school year
strongly after a medication adjustment helped her remain symptom free for a period
of time, and she settled into a more relaxed routine for the summer. The neuropsy-
chologist carefully reviewed report cards from school since kindergarten, finding no
consistent or compelling history of ADHD symptoms. Careful history-taking and
several months of the watching-and-waiting approach seemed to have paid off, as the
clinical information now appeared to adequately account for Laura’s fluctuations in
functioning over the years, which correlated with her medical condition. Particularly
in light of questions about the specificity and sensitivity of neuropsychological testing
in suspected ADHD, was testing to be considered optional, advised, medically
necessary, or something else at this time? Laura’s parents, with characteristic thor-
ough and detailed orientation to their children’s well-being, decided to proceed.
Test Results
Laura began testing on a day when she had been generally symptom free for several
months, and she showed her normal level of energy. However, her mother reported
at the feedback session the following week that Laura was already showing gradual
reappearance of symptoms such as swelling at the time of testing. In part because

Laura might be in a period of change in her general balance of well-being vs.
malaise, and in part because the psychosocial and educational history had not
suggested consistent ongoing impairment in behavioral or cognitive function (ex-
cept in periods of increased dysautonomic symptoms, which were treatable with
adjustments in medication), a limited sampling of neuropsychological functions
was assessed for baseline purposes.
Laura’s effort and cooperation throughout testing were adequate to ensure that
the reported results were valid and reliable. She was talkative and pleasant, smiling
frequently, and sometimes singing or humming while completing tasks. She did not
become frustrated during the testing, but she did state when items were becoming
more difficult for her. Most of the time, she thought carefully before choosing an
answer. On one executive task, however, she began each problem very quickly,
seemingly without thinking ahead. She often stood up during tasks or sat on her
knees, leaning over the table. She frequently fidgeted and moved around throughout
the testing. She also played with pencils, cups, and wrappers. Although she
appeared to become slightly fatigued toward the end of the testing session, neither
this nor her signs of restlessness seemed to affect her performance, and she
continued to think about and put forth a great deal of effort on all tasks.
Laura’s overall intelligence was in the average range, with equivalent verbal
reasoning skills and visual-spatial problem-solving skills (Table 32.1). Among core
verbal subskills, she showed high average vocabulary knowledge, with average
commonsense social reasoning and word comparison skills or abstract verbal
conceptualization. She was average on a cluster of subtests sensitive to verbal
working memory. Among core visual-spatial subskills, she was average in abstract

Wechsler Intelligence Scale for Children – Scorea Percentile
Fourth Edition
Similarities (11) 63rd
Picture Concepts (11) 63rd
Digit Span (11) 63rd
Letter-Number Sequencing (11) 63rd
Coding (5) 5th
a
visual construction when copying block design patterns and discerning concepts in
pictures and high average in visual analogies. She was mildly impaired on a cluster
of subtests that relied on visual-perceptual processing speed.
Assessment of attention, impulse control, and related executive mental functions
suggested mild inconsistencies (Table 32.2). When Laura was asked to respond to a
specified number sequence flashing on a small computer screen over a several
minute period, her sustained attention was in the normal range, as was her number
of incorrect impulsive responses. When asked to work on math problems alone
while being observed through a one-way window for 10 min, she showed modestly
excessive off-task time and fidgeting. Her planning and sequential problem-solving
were mildly impaired, but she showed high average basic concept formation and
adaptive switching of mental sets. She made excessive slips in maintenance of
mental sets, but this appeared related to her unique behavior of humming through-
out this particular test. Her visual searching speed was average both with a simple
number sequence and with an alternating number and letter sequence.
Behavior-rating questionnaires were completed by her parents and teachers with
separate reference to a flare-up of dysautonomic symptoms several months before vs.
her more recent stable period (Table 32.2). The Child Behavior Checklist (CBCL)
during the symptomatic time showed clinically significant withdrawn/depressed
symptoms, physical problems, attention problems, and unusual behavior patterns
(e.g., extra fantasy talk and unexpected eye movements) and clinically borderline
social problems. The CBCL during the relatively symptom-free period was within
the normal range. The Teacher Report Forms for the two periods were virtually
identical, with clinically borderline withdrawn/depressed symptoms.
Laura showed modest fluctuations in executive measures and mental processing

speed on testing, but these were not sufficient to diagnose any of the three types of
ADHD in light of her history. During periods of symptom exacerbation, her
concentration and work persistence suffered, and then subsequently improved
with treatment modifications. Subtle (and sometimes not so subtle) contextual
issues in family and school interactions contributed to Laura’s level of anxiety,
frustration, and initiative-taking. Her overall cognitive functioning and strong
academic skills rendered other, more detailed neuropsychological assessment not
needed at the time of the evaluation reported here.
The neurologic determination of dysautonomia is distinct from, but perhaps
relevant to, psychophysiological studies of the relationship between autonomic
reactivity and psychopathology. For instance, Boyce et al. (2001, p. 148) found
that ‘‘children with behavior suggestive of developmental psychopathology
revealed profiles of upregulated or downregulated physiological arousal derived
from one or both branches of the autonomic nervous system,’’ including differences
between early elementary aged children with internalizing vs. externalizing symp-
toms. The authors suggested that these patterns might contribute to estimating
Table 32.2 Other functions

Vigilance task (9 min)
Correct 44
Commission errors 4
Restricted Academic Task
Off-task 50th
Fidgeting 45th
Vocalizing 0
Playing with objects 35th
Out of seat 0
Trailmaking Test
Part A 99 47th
Part B 91 27th
Categories >16th
Nonperseverative errors 113 81st
Conceptual level responses 120 91st
Failure to maintain set 6th–10th
The Tower of London 72 3rd
Parent 1
Anxious/depressed [53] 62nd
Withdrawn/depressed [70] >97th
Somatic complaints [74] >97th
Social problems [65] 93rd
Parent 2
Teacher’s Report Form 1
(continued)

Teacher’s Report Form 2
Thought problems [64] 92nd
Attention problems [56] 73rd
children’s risk for psychopathology. It is feasible that Laura’s case illustrated a

connection between abnormal autonomic functions and her development of inter-
nalizing symptoms in particular.
On the one hand, when Laura has future exacerbations of dysautonomic symp-
toms, it might contribute to educational programming or behavior management to
selectively repeat some of the attention and executive function measures in the
neuropsychological evaluation. On the other hand, the main intervention at such
times would involve medication adjustment based on relevant physical symptoms,
and everyday life observation could be quite sufficient for pragmatic, short-term
psychosocial treatment planning and adjustment of school requirements (as out-
lined in some of the previous chapters on ADHD). Laura’s continuing psychother-
apy provides ongoing support through more difficult periods and is probably
relevant for preventative work on what could be an autonomic-based increased
risk for psychopathology in her case.
Dysautonomia Any dysfunction of the autonomic nervous system (ANS). Often

the result of failure of the sympathetic or parasympathetic components of the ANS
and rarely the result of excessive ANS activity. May be focal, as in complex
regional pain syndrome, but is more often generalized; its course can be acute
and reversible or chronic and progressive.
Electromyography (EMG) Test for motor neuron and muscle function in which an
electrode that is inserted into muscle records the action potentials generated by
muscle activity.
Neuropathy Disorder affecting a segment of the nervous system, particularly

cranial or peripheral nerves.
Myopathy Abnormal condition or disease of muscular tissues; most commonly
refers to skeletal muscle.
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Description of Tests and Reported Scores
Test Source information

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Animal Fluency/Animal Naming Bousfield, W. A., & Sedgewick, H. W. (1944). An
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Behavior Assessment System for Children Reynolds, C. R., & Kamphaus, R. W. (1992).
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Behavior Rating Inventory of Executive Gioia, G. A., Isquith, P. K., Guy, S. C., &
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Benton Facial Recognition Test Benton, A. L. Lutz, FL: Psychological Assessment
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Benton Judgment of Line Orientation Test Benton, A. L. Lutz, FL: Psychological Assessment
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Boston Naming Test Kaplan, E., Goodglass, H., & Weintraub, S.
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Grooved Pegboard Test Lafayette, IN: Lafayette Instrument, 1989.
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Intermediate Booklet Category Test Byrd, P. B. Lutz, FL: Psychological Assessment
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Kaufman Assessment Battery for Kaufman, A. S., & Kaufman, N. L. Minneapolis,
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Woodcock Reading Mastery Test – Woodcock, R. W. (1989). Minneapolis, MN:
Revised Pearson.
Scores indicate performance compared to other same aged children: standard scores
have a mean of 100 and a standard deviation of 15 and an average range of 85–
115; scaled scores have a mean of 10 and a standard deviation of 3 and an average
range of 7–13; T-scores have a mean of 50 and a standard deviation of 10 and an
average range of 40–60; Z-scores have a mean of 0 and a standard deviation of 1
and an average range of 1 to +1
Percentile ranks show how well a child performed compared to a group of children
the same age from across the United States. For example, if the percentile is 45, it
means that he/she ranked at or above 45 out of 100 students his/her age, which
would be considered solidly average
Age equivalents, where reported, are in years–months
Grade equivalents, where reported, are in the grade’s year and month
Index
Acoustic reflexes, 319, 322 slow information processing, 129

Adaptive behavior, in autism, 240 Antiepileptic drug (AED), 69
Adaptive behavior, in seizure, 81, 83 Antiepileptic medication, seizure, 79, 98
Adolescent traumatic brain injury (TBI) Anxious/depressed and thought problems
behavioral changes in, 34, 35 scales, 210
cognitive functions evaluation, 37 Aphasia, 109
computerized tomography (CT) scans, 34 Applied behavioral analysis (ABA)
IQ measurement, 38 therapy, 219, 242
neuropsychological testing and results, Applied verbal behavior (AVB), 220–221
35, 36 Asperger’s disorder
recovery, 40 behavior patterns, 297
speech and language evaluation, 39–40 sensory processing, 302–304
American Speech-Language-Hearing Asperger’s disorder, 241
Association (ASHA), 308 Assessment of Basic Language and Learning
Analytic phonics-based program. See Skills (ABLLS)
Phonological decoding Child’s Mastery Level Assessment
Anoxic brain injury labeling, 225
analytic phonics-based program, 134 receptive language, 223
articulation problems and language social interaction, 226
impairments, 130 vocal imitation and request, 224
encephalopathy and adjustment Attention deficit hyperactivity disorder
disorder, 126 (ADHD)
immediate memory skills, 133 abstract assignments tracking, 156
left-sided neglect, 129 CAPD, 330
pathological left-handedness syndrome, and CAPD overlap, 311, 318
92–93 combined type (ADHD-C)
pharmacotherapy trial, 135–136 abstract reasoning in, 148
post traumatic stress disorder, 126 emotional functioning in, 146
processing speed in, 130 organizational checklists and
psychometric intelligence measures, hyperactive tendencies, 147
131–132 double-deficit dyslexia, 176
recommendations for, 126–127 dysautonomia, 345, 347, 349
slow attention and nocturnal environmental complications, 151–152
enuresis, 133–134 executive functions in, 155
357
358 Index
inattention or hyperactive symptoms, 143 California Verbal Learning Test for

intellectual abilities and executive Children (CVLT-C), 208–209
function skills, 153, 155 Central auditory nervous system, 322
and nonverbal learning disability Central auditory processing disorder
(NLD), 8 (CAPD)
pediatric bipolar disorder, 245 acoustic stimuli, 308and ADHD overlap,
section 504 evaluation plan, 157, 158 311–317
and shaken baby syndrome (SBS), 19 assessment of diagnosis, 318
symptoms of, 146 auditory skills, 309
types of, 142 cognitive function test, 311–317
Williams syndrome, 259, 260 diagnosis, 309, 310
Attention deficits, CAPD, 327 formulation and recommendations,
Auditory figure ground subtest, 309, 319 329
Auditory processing disorder (APD). See mixed receptive and expressive
Central auditory processing language disorder, 330
disorder (CAPD) organization and planning
Autism skills, 332
diagnosis, 240–241 phonics skills, 330–331
neuropsychological profile problem solving skills, 332
cognitive ability assessment, reading strategies, 331
234–235 written language skills, 331–332
developmental language test, Goldman-Fristoe-Woodcock test, 319
237–238 hearing mechanics, 309
fine motor dexterity tests, 235 IEP evaluation, 310, 311, 321,
formal and visual attention test, 322, 325
235–237 intervention for, 320, 321
preacademic skills, 238 modifications for patients, 321
social interaction skills, 238–240 psychometric testing, 309, 310
Autism spectrum disorders (ASD). See also symptoms, 308
Autism test result in diagnosis, 319
ABA therapy Wechsler Intelligence Scale, 326
behavioral language classification, Woodcock-Johnson tests, 327
220–221 Cerebral vascular accident (CVA).
model of, 220 See Intrauterine stroke
ABLLS Chemotherapy, neurological problems
child’s mastery level assessment, cognitive behavioral therapy
221–222 techniques, 116–117
Steven’s skill development, 223–226 evaluation results
Child Development inVentory results, emotional concerns, 115
219 intellectual ability, 111–112
consequences, 218, 240 motor dexterity and memory
neuropsychological assessment, 218–219 functions, 114
recommendations, 227 language difficulties, 110
leukemia, 109
Beery-Buktenica Developmental Test trouble focusing, 111
reading disorder, 269 Child Behavior Checklist (CBCL),
sensory processing, 298 dysautonomia, 347
Bracken School Readiness Assessment, 238 Child life specialist, 67
Index 359
Clinical Evaluation of Language RAVE-O goals, 182

Fundamentals-fourth Edition secondary learning difficulties, 181
(CELF-IV), Williams syndrome, 258 skills pattern assessement, 181–182
Cognitive ability assessment, 234–235 WRMT-Passage Comprehension subtest,
Cognitive behavioral therapy (CBT), 101, 179–180
116. See also Residential treatment WRMT-R Word Attack subtest, 179
center (RTC) Dysautonomia
Cognitive-behavioral treatment (CBT), Child Behavior Checklist, 347
Tourette’s syndrome, 274 clinical impression, 344
Complex partial seizures, 69 formulation and recommendations
Comprehensive Test of Phonological behavior management, 349
Processing (CTOPP) psychopathology risk, 348–349
lingering dyslexia, 170 neurological evaluation, 343–345
reading disorder, 268, 270, 271, 273 Wechsler Intelligence Scale, 346
Concussion Dyslexia. See also Reading disability;
and mild traumatic brain injury, 43, 44 Reading disorder
neuropsychological recommendations, eighth grader test results
46, 48 cognitive functions, 171
test on persistent effect, 45–47 math word problems, 171–172
Wechsler adult intelligence scale, 47 phonological awareness, 170
Conversion disorder, 335 recommendation, 172
formulation and recommendations, 338, eleventh grader test results
339 cognitive functions, 172
postconcussive syndrome and la belle recommendation, 173
indifference, 340 third grader test results
psychotherapy and counseling, cognitive functions, 169
340–341 recommendations, 169–170
nonepileptic seizures and myofascial pain Wechsler scales factor analysis,
syndrome, 336 167–168
Wechsler Adult Intelligence Scale, 337
Woodcock-Johnson tests, 338 Electroencephalogram (EEG), 87–88
Electromyography (EMG), dysautonomia,
Dactylitis, 51 344
Depression, 116 Embolic stroke, 121
Developmental speech apraxia, 267 Emergency medical services (EMS), 33
Diagnostic delineation, 241 Encephalomalacia, 122
Differential Abilities Scale (DAS) Epilepsy, 77. See also Seizure
mild autism, 234 Executive functions
posthemorrhagic hydrocephalus, 5 ADHD, 155
Williams syndrome, 256–257 CAPD, 330
Double-deficit dyslexia. See also prefrontal-subcortical brain systems, 157
Naming-speed deficits Expressive language disorder, 74
assessment construct clusters, 177
double-deficit factors, 180 Fine motor dexterity tests, 235
naming-speed deficits, 176–177 Floor time therapy, 242–243
phonological deficits, 176 Fluorescence in situ hybridization (FISH)
processing and achievement tests and test, 255
criteria, 178 FM system, 321, 322
360 Index
Glasgow Coma Scale (GCS), 24, 44 Jaundice, 87, 130

Goldman-Fristoe-Woodcock test, 319
Graphomotor difficulties, Williams
Kaufman Brief Intelligence Test
syndrome, 261
(K-BIT), 256–257
Grooved Pegboard test, 209
Habit reversal training (HRT), Tourette’s La belle indifference, conversion

syndrome, 275 disorder, 340
Hemiparesis Language-based academic functions.
brain injury and physical trauma, 122, See Chemotherapy, neurological
123, 127 problems
epilepsy, 79 Left-hemisphere stroke, 92
pathological left-handedness, 87, 88 Leukemia
viral encephalitis, 98 chemotherapy treatment, 115–116
Hemizygous microdeletion, 255 classification, 110
Hemorrhages stroke and aphasia, 109
adolescent traumatic brain injury, 34, 41 Lingering dyslexia
conversion disorder, 335 CTOPP, 170
intraventricular Pennington’s scheme, 168–169
definition, 10 Lovaas therapy. See Applied behavioral
Papile grading, 4 analysis (ABA) therapy
physical trauma and brain injury, 122
retinal, 14, 20, 21 Medulloblastoma
subdural, 14, 20, 21 cognitive functions, 64
Higher order language skills, 74 neuropsychological
Hydrocephalus, 4, 5 evaluation, 61
Hyperactive symptoms posterior fossa in, 59
motor restlessness, 143, 144 radiation and chemotherapy, 60
test session behavior, 145 recommendations
implications of, 66
Immediate memory skills, 133 individualized education program
Individualized education program (IEP) (IEP), 65
auditory processing disorder, 310 test results
autism spectrum disorders, 222 Wechsler Intelligence Scale, 62
brain injury and, 127 Woodcock-Johnson tests, 63
CAPD, 325 white matter damage, 63, 64
epilepsy and seizures, 77–79 Memory functions, psychosocial
leukemia and, 117 factors, 114
medulloblastoma and, 65 Mild traumatic brain injury (TBI),
nonverbal learning disability, 211–212 43. See also Concussion
pediatric bipolar disorder, 246 Mixed receptive and expressive
premature birth, 9 language disorder
reading disability, 159 CAPD, 330
sickle-cell disease, 56 reading disorder, 267
and TBI, 25 Mood disorder. See Pediatric bipolar
Intrauterine stroke, 87–88 disorder
Intraventricular hemorrhage (IVH), Myofascial pain syndrome, 336
premature birth, 3, 4 Myopathy, dysautonomia, 344
Index 361
Naming-speed deficits depression symptoms and mental

analytic and synthetic phonic illness, 250
instruction, 183 IEP and medication, 251
multistep learning technique and intellectual functions, 247
ROAR, 184–185 long-term treatment, 251–252
tapes listening and independent and psychosis, 249–250
reading, 185 rapid naming tasks, 248
word pattern review cards, 183–184 Pennington’s scheme, lingering dyslexia,
Nelson-Denny Reading Test, 198 168–169
Neuropathy, dysautonomia, 344 Peripheral hearing system, 309
Nocturnal enuresis, 134 Peritoneal shunt, 21
Nonepileptic seizures, 336 Perseveration, seizure, 80
Nonverbal learning disability (NLD), 8 Pervasive developmental disorder, 241
anxious/depressed and thought See also Autism spectrum
problems scales, 210 disorders (ASD)
cognitive functions, 205–206 Phoneme aware deficit, 182
CVLT-C, 208–209 Phonemic decoding efficiency
diagnostic principles, 211 subtest, 179
Grooved Pegboard test, 209 Phonological awareness, 162–163
group therapy and direct skill Phonological decoding
instruction, 213 abacus teaching method, 135
Individualized education program reading difficulties, 135
(IEP), 211–212 Phonological deficits, 176
intellectual functions, 204–205 Phonological memory
perceptual reasoning and working CTOPP performance, 268, 269
memory scale, 207–208 definition, 194
similarities and picture completion Phonological processing method
subtest, 208 components of, 192
tactile perception and reading comprehensive test, 194, 197
assessment, 209 RAVE-O method, 194–195
verbal script development, 212 Physical trauma, brain injury
embolic stroke, 121
Obsessive-compulsive (OC) disorder, 274 encephalomalacia, 122
Oppositional defiant disorder (ODD) facial deformities, 123
diagnosis, 302–303 hemiparesis and neglect, 122
formulation and recommendations intellectual and memory abilities,
behavioral and sensory control, 304 123–124
medical evaluation, 305–306 Postconcussive syndrome (PCS), 340
psychotherapy, 305 Posttraumatic amnesia, 44
structured social interaction, Pragmatic skills, 316, 318
304–305 Premature birth
sensory profile scores, 301–303 ADHD and NLD in, 8
and cognitive functions, 6, 7
Paraphasia, 318 complications of, 4
Pathological left-handedness syndrome, fine motor and visual-spatial
92–93 weaknesses, 7–9
Pediatric bipolar disorder hydrocephalus, 4, 5
cognitive functions, 249 intellectual capabilities, 5
362 Index
intraventricular hemorrhages, 3, 4 psychiatric care, 97

neuropsychological testing in, 9, 10 psychoeducation, 101
Primitive neuroectodermal tumor (PNET), Retinal hemorrhage, 21
59 Retrieval, automaticity, vocabulary
Process assessment of the learner (PAL), elaboration, orthography (RAVE-O)
271, 272 method
Pseudoseizures. See Nonepileptic seizures dyslexia, 170
Psychoeducation, 98–99 reading fluency, 194
Ptosis, TBI, 24 Right hemiparesis, 87
Reading disability Schizophrenia, psychotic disorder, 250

cognitive and intellectual functions, 161 Seeking patterns, sensory processing,
individualized education program (IEP), 302–304
159 Seizures
learning difficulty and, 162–163 adaptive behavior, 81, 83
neuropsychological profile, 160–161 and behavioral problems, 70
phonics training, 163 cognitive and motor testing, 90–92
phonological awareness deficits, 163 control of
wordwall concept, 164 antiepileptic medication, 79, 98
Reading disorder neurosurgery and ketogenic diet, 77
initial evaluation vagus nerve stimulator (VNS), 106
cognitive testing, WIAT-II and electroencephalogram (EEG) monitoring,
CTOPP, 268–269 88
formulation and recommendations, formulation and recommendations, 74–75
269–270 hemispherotomy, 78
second evaluation neuropsychological assessment
formulation and recommendations, intellectual ability testing, 88–90
273–275 language skills and eye movements,
TAPS-R and TOWL-3, 271–272 79–80
Wechsler Intelligence Scale, 270–271 visually-based reasoning skills
Reading fluency disability, 80–81
neuropsychological evaluation, age 9 perseveration, 80
cognitive functions, 194 role of antiepileptic drug, 69
intellectual functions, 193 source memory, 100
neuropsychological evaluation, age 17 status epilepticus, 98
cognitive functions, 197 test results
intellectual functions, 196 cognitive functions in, 71
phonological processing, 192, 194 emotional assessement, 72
psychotherapy, 197 intellectual screening, 73
RAVE-O method, 194–195 visual field deficits, 79
Repeated oral assisted reading (ROAR), 184 Sensory processing
Residential treatment center (RTC) behavioral and sensory control, 304
behavioral interventions, 102 Dunn’s model and behavioral outcomes
care and medications, 104 of, 302
cognitive behavior therapy (CBT), 102, neuropsychological testing, 297–301
103 sensory profile scores, 301–303
neuropsychological evaluation in, 105 and structured social interaction,
primary treatment goals, 98–99 304–305
Index 363
Wechsler Intelligence Scale, 295–296 IQ measurement of, 38

Shaken baby syndrome (SBS) neuropsychological testing and results,
assessment in, 16 35, 36
and attention deficit hyperactivity recovery, 40
disorder, 19 and ptosis, 24
cognitive functions, 17 school-aged children
intellectual functioning, 16, 17 academic skills screening, 26, 27
neuropsychological impairments, 15 behavior and token economy plan, 29
recommendations cognitive functions, 28
behavioral management, 20 eyelid drooping, 24
verbally-based step-by-step neuropsychological testing, 27
approach, 21 neurostimulant for, 30
traumatic brain injury and, 14 perseveration, 26
verbal list-learning task, 18, 19 practice effects, 25
visual and auditory attention, 18 seizures, 30
Sickle-cell disease and shaken baby syndrome, 14–20
cognitive functions, 55, 56
dactylitis and acute chest Ventriculoperitoneal shunt, premature
syndrome, 51 birth, 3
executive functions, 54 Visual attention test, 235–237
focal silent ischemic infarct, 52 Visual field deficits, 79
follow-up evaluation, 53, 54 Visual perception test, 238
individualized education plan, 56 Visuospatial construction, Williams
initial evaluation, 52, 53 syndrome, 256, 261, 263
occupational therapy, 56–57 Von Willebrand disease, 44
and stroke, 51, 56
Signal to noise ratio, 321 Wechsler Abbreviated Scale, 73
Somnolence, 38 Wechsler Individual Achievement Test-II
Specific language impairment, 316 (WIAT-II), 268, 269
Speech and language pathologist (SLP), Wechsler Intelligence Scale for Children
267, 268, 271 (WISC)
Speech and language therapy, 242 ADHD, 143–145
Status epilepticus, in seizure, 98 adolescent TBI, 36
Stroke. See Intrauterine strokeSubdural anoxic brain damage, 131–133
hematoma, 34 atypical ADHD, 153–154
CAPD, 326
Test of Auditory Processing-Revised conversion disorder, 337
(TAPS-R), 267, 272 double-deficit dyslexia, 177–178
Test of Written Language-3 (TOWL-3), dysautonomia, 346
271, 272 dyslexia, 168
Time Compressed Words test, 319 medulloblastoma, 62
Tourette’s syndrome (TS), 274–275 pathological left-handedness, 89–90
Traumatic brain injury (TBI) pediatric bipolar disorder, 247
adolescence physical trauma, brain injury,
behavioral changes in, 34, 35 123–124
cognitive functions evaluation of, 37 psychosocial factors, 112–113
formulations and recommendations, psychotherapy, brain injury, 99
38–40 reading disorder, 346
364 Index
reading fluency, 193 vocational skills, 261–262

seizures, 82 written language skills, 261
sensory processing, 296 visuospatial constructive abilities,
shaken baby syndrome, 17 256, 261, 263
sickle-cell disease and stroke, 53, 54 Woodcock-Johnson tests
TBI, school-aged children, 26 adolescent TBI, 36
Williams syndrome, 255 CAPD, 327
attention deficit hyperactivity conversion disorder, 338
disorder, 259–260 medulloblastoma, 63
clinical assessment, 256 seizure disorder, 73
clinical evaluation of language sensory processing, 287
fundamentals, 258 sickle-cell disease, 53
DAS and K-BIT, 256–257 WRMT-Passage Comprehension
formulation and recommendations subtest, 179–180
adaptive self-statements, 262–263 WRMT-R Word Attack subtest, 179
reading comprehension skills, 261
social interaction and anticipatory
anxiety, 262

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Pediatric Neuropsychology Case Studies:

From the Exceptional to the Commonplace

Laura Weiss Roberts

ISBN 978-1-4419-6080-1 e-ISBN 978-0-387-78965-1

Library of Congress Control Number: 2009944166

# Springer Science+Business Media, LLC 2010

Printed on acid-free paper

Springer is part of Springer Science+Business Media (www.springer.com)

Part I Dangers of Childhood: Neurological Disorders

1 Beating the Odds: Prematurity and Posthemorrhagic Hydrocephalus 3

2 Never, Ever Shake a Baby: Pass It On . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

3 Grand Larceny in the First Grade: Traumatic Brain

4 A Slippery Descent: Adolescent Traumatic Brain Injury . . . . . . . . . . . . . . 33

5 Steamrolled: Sports-Related Concussions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43

6 Bad Signs: Sickle-Cell Disease and Stroke . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 51

7 Life Interrupted: Medulloblastoma . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 59

8 The Mystery of the Falling Grades: Seizure Disorder . . . . . . . . . . . . . . . . . . 69

9 When Half a Brain is Better than One: Recurrent Seizures . . . . . . . . . . . 77

10 Pathological Left-Handedness: Stroke and Seizures . . . . . . . . . . . . . . . . . . . . 87

11 Moving Forward: Psychotherapy with a Youth

12 Family Matters: Psychosocial Factors on Neuropsychological

13 Dog Attack: Physical Trauma with Associated Brain Injury . . . . . . . . 121

14 Back to Life: Anoxic Brain Damage in a Near Drowning . . . . . . . . . . . . 129

Part II How It Can All Go Wrong: Developmental Disorders

15 The Energizer Bunny Meets Shirley Temple: Attention

16 ‘‘He is not Working up to Potential’’: Atypical Attention

17 Sorting Sounds: Reading Disability with Phonological

18 Well Compensated But Never Quite Solved: Lingering Dyslexia . . . . 167

19 Emily Confronts Her Fiercest Bear: Word Reading Disorder

20 A Tale of Two Assessments: Reading Fluency . . . . . . . . . . . . . . . . . . . . . . . . 191

21 Lost in Space: Nonverbal Learning Disability . . . . . . . . . . . . . . . . . . . . . . . . 201

22 Beyond Diagnosis: Applied Behavior Analysis Treatment

23 When Quirks and Quick Learning Create a Quandary:

24 On Eggshells: Pediatric Bipolar Disorder . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 245

25 It Helps to Know Genetic Basis: Williams Syndrome

26 Mixed Bag: Tics, Compulsions, and More . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 267

Part III Things that Go Bump in the Night:

27 A ‘‘Sensational’’ Way to Understand and Serve Children:

28 Sense and Sensibility: Relating Behavior Control Issues

29 Elusive, Inclusive, or Conclusive? (Central) Auditory

30 A Little of This, A Little of That: (Central) Auditory

31 A Hunt for the Elusive Neuropsychological Impairment:

32 A Mystery of Perplexing Symptoms: Neuropsychological

Appendix Description of Tests and Reported Scores . . . . . . . . . . . . . . . . . . . . . 351

Jennifer Niskala Apps

Lynn Bennett Blackburn

Susan Oliff Carneol

Laura Weiss Roberts

J.N. Apps et al. (eds.), Pediatric Neuropsychology Case Studies: 3

Table 1.1 Papile (1978) grading of intraventricular hemorrhages

Table 1.2 Common complications of premature birth

Lucy underwent her first neuropsychological evaluation at age 5 years, 4 months.

Table 1.3 Intellectual

Table 1.4 Other cognitive functions

Table 1.4 (continued)

Formulation and Recommendations

Lucy’s pattern of performance on measures administered during the neuropsychologi-

pressure of hydrocephalus repeatedly have been associated with deterioration of

Key Concepts and Terms

Hydrocephalus Accumulation of cerebral spinal fluid within the ventricular system

Resources for Clinicians

Resources for Families

Hydrocephalus Association. http://www.hydroassoc.org/