Autism Spectrum Disorders: A Counselors Guide to Family-Focused Intervention

Thomas A. Field, Malayna R. Ford, and Jeanne D. Booth

Lynchburg College

on obtaining positive social outcomes and addressing the above-mentioned symptoms.

Increasing Prevalence of ASD

Abstract Diagnoses of autism spectrum disorders have increased dramatically over the past decade. Counselors can support families presented with challenges such as disruption in the home setting, unsupportive social environment, lack of centralized services, and ambiguous loss. Effective and ineffective coping strategies are reviewed and counseling interventions are recommended.
Parents of children with autism spectrum disorders (ASD) face many challenges regarding raising and caring for their children. Families of children with ASD struggle in three main aspects of life: intrapersonal, interpersonal, and social. The counselors role in assisting parents of children with ASD has not been fully explored in the literature. This literature review summarizes challenges that occur in each of these three domains, and also presents effective counseling interventions for each domain to assist families of these children.

The increased prevalence of ASD in our society has created a large, unmet need for clinical intervention by counselors in helping families and children affected by the disorder. The incidence of ASD has been estimated to increase by 10-15% each year (Luther, Canham, & Cureton, 2005). Three decades ago, the estimated rate was far lower than the current rate, with only one in approximately 3,333 children being so diagnosed (American Psychiatric Association, 1980). Recent estimates for the prevalence of ASD have climbed to approximately one in 91 children (Kogan, Blumberg, Schieve, Boyle, Perrin, Ghandour et al., 2009). This is a significant increase from the prior estimate of one in 150 children diagnosed (Centers for Disease Control & Prevention, 2007).

Challenges Facing Families of Children with ASD Intrapersonal Challenges

Overview of Autism Spectrum Disorders

The Diagnostic and Statistical Manual of Mental Disorders published by the American Psychiatric Association (APA, 2000) lists five diagnostic classifications within the continuum of ASDs. These include Autistic Disorder (known as classic autism), Asperger Disorder, and other Pervasive Developmental Disorders. Deficits occur in the major areas of socialization, communication, and the presence of repetitive or restrictive behaviors. Children with an ASD diagnosis often experience poor outcomes in adulthood (Barnhill, 2007). Only a small percentage of these children gain independence from attachment figures. In a recent survey entitled Living with Autism, parents reported that only 4% of young adults with ASD were living independently after high school, compared to 58% of typically developing young adults (Easter Seals, 2008). As of 2012, there is no known cure for those with ASD, and treatment goals focus

Internal stress. Due to the challenges caused by raising a child with ASD, parents of these children experience higher levels of psychological stress when compared with parents of typically developing children (P-TDC). Baker-Ericzen, Brookman-Frazee, and Stahmer (2005) found that 24% of mothers of children with ASD self-reported significant stress levels compared with 9% of mothers of typically developing children (TDC). Fifteen percent of fathers of children with ASD also self-reported significant stress levels, compared to 0% of fathers of TDC. This intrapersonal stress is caused by a number of different factors. Direct care. Consistent with the research cited above, families experience multiple stressors related to activities of daily living. Children with ASD often struggle with diet, hygiene, and toileting skills (Mash & Wolfe, 2005). Regarding meal planning, parents reported that their children with ASD exhibited unusual eating habits, with 76% of parents reporting that their child eats only a few foods or only certain food textures (Kerwin, Eicher, & Gelsinger, 2005). Kerwin et al. (2005) also found that 49% of children with ASD awakened during the night. Parental disturbed sleep patterns were related to the sleep disturbances of their children. The majority of parents reported that their children engaged in self-injurious behavior at least

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once a day, with 87% of children banging or hitting their head, 83% banging or hitting their ears, and 74% putting pressure on their eyes (Kerwin et al., 2005). In a parental study by Pottie and Ingram (2008), most respondents reported spending six to eleven hours a day in direct care for their child with ASD. This figure increased to over twelve hours a day on weekends. Similarly, Kerwin et al. (2005) noted that 45% of parents spend up to five hours a week in direct care activities, 33% up to eleven hours a week, and 22% exceed twelve hours a week. Twoy, Connolly, and Novak (2007) found that parents also spend a significant amount of time coordinating services, researching information, consulting with professionals, and advocating for their child with ASD. Financial burden. Jarbink, Fombonne, and Knapp (2003) estimated that the average cost of raising a child with ASD is three times the cost of raising a TDC, which presents a significant financial burden to parents. In the Easter Seals (2008) survey, 52% of parents reported that their child with ASD drains the familys current financial resources, compared to 13% of TDC. Fifty-four percent of parents reported that their child with ASD would cause them to fall short of money during retirement, compared to 13% of P-TDC. These short- and long-term associated costs of raising a child with ASD include parental difficulties in maintaining employment, purchasing specialized equipment and/or technology, catering to the dietary needs of the child, and paying for medical, pharmacological, and behavioral/therapeutic interventions. Twoy et al. (2007) reported that parents of a child with ASD spent nearly $6,000 per year on average for educational and support services or treatment. Virginia Medicaid waivers for these families are competitive and have long waiting lists (Commonwealth of Virginia Department of Mental Health, Mental Retardation, and Substance Abuse Services, 2008), often preventing families from receiving needed services for the child. False hopes and ambiguous loss. Some organizations, such as the Autism Research Institute (ARI, 2010), promote claims that recovery is possible for autism. The ARI has published a text entitled Recovering Autistic Children (Edelson & Rimland, 2006), which includes testimonies from family members of children who have recovered. Many of the interventions advocated by ARI are dietary changes such as the gluten-free, casein-free diet. These diets are often

expensive and labor intensive to maintain. Although some families report that dietary changes appear to be beneficial to their child, few report that their child has been cured. By placing their hopes in a miracle cure, parents of children with ASD may often struggle around accepting the permanence of their childs diagnosis. They may experience a complicated sense of grief because their loss is not concrete; at times, their child may appear to behave comparably to a TDC and thus be improving. At other times, the child behaves in a more symptomatic manner, consistent with their ASD diagnosis. Due to the cyclical nature of the childs functioning, parents may remain hopeful in the possibility of their child recovering from their diagnosis (OBrien, 2007). This roller-coaster nature of expectancy and disappointment may cause the parent to experience loss on a recurrent basis.

Interpersonal Challenges

Family dynamics. Marital stress is an important predictor of sibling relational dissatisfaction in families of children with ASD (Rivers & Stoneman, 2003). The less marital stress experienced in a family, the greater satisfaction the siblings displayed in their relationship with the child with ASD. Sibling rivalry may result from the greater family attention given to the child with ASD. Vert, Roeyers, and Buysee (2003) found that compared to siblings of TDC, six to eleven year old siblings of children with ASD had increased internalizing and externalizing behavior problems, lower self-concepts, and fewer social competence skills. Hastings (2003) reported that siblings of children with ASD had more peer problems, more overall adjustment problems, and lower levels of pro-social behavior. Clearly, the whole family is affected when caring for a child with ASD. Interpersonal stress may result from the impairment of multiple relationships within the family system, such as parent-parent relationships, parent-sibling relationships, and sibling-sibling relationships. The complex relational interaction between different family members is reflective of a systemic problem. Systemic problems are not easily remedied, since micro changes in caring for the child with ASD can affect other members of the family via the dynamic nature of family functioning (Rivers & Stoneman, 2003). To illustrate this point, imagine that a parent increases the amount of daily time spent with siblings of the child with ASD, to decrease sibling rivalry. This may actually stir up spousal jealousy, because the

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other parent may notice that the partner is spending even more time with the children and less time with the spouse. The ensuing conflict between parents increases intrapersonal parental stress, which in turn leads to increased sibling dysfunction. This complicated process may feel overwhelming to parents of children with ASD, since the parent in this example was attempting to decrease sibling dysfunction, yet the intervention actually resulted in increased dysfunction (Hastings, 2003).

Social Challenges

Stigma and isolation. Families also may experience stigma related to parenting a child with a developmental disorder (Twoy et al., 2007). Social outings can become a struggle, as parents feel inadequate to handle stereotypic or other problem behaviors displayed in public. The family may have decreased contact with the outside community due to the communitys lack of education and tolerance regarding the childs behavioral characteristics (Twoy et al., 2007). In addition to consequent isolation effects, parents contend with overly high expectations of professionals involved in their childs care, related to their childs invisible disability (Portway & Johnson, 2005, p. 73). Invisible disability is defined as a lack of physical characteristics that often define socio-cultural concepts of disability, meaning that a child with ASD looks like a TDC. Brewin, Renwick, and Schormans (2008) found that parents of children with Asperger Disorder reported that professionals (e.g., physicians) had overly high expectations for the child when unaware of their childs disorder, and expected the child to behave like a TDC. However, when physicians were informed of the childs ASD, they refused to treat the child because they claimed that they could not manage the child. School concerns. Parents may feel frustrated with the services their child receives through the school system. Easter Seals (2008) reported that 70% of parents of children with ASD said they were concerned about their childs education, compared with 36% of P-TDC. In the Brewin et al. (2008) study, a mother stated, [The schools] dont understand or they dont want to understand what [Asperger Disorder] is. Their whole attitude is that Im just a crappy mom and I dont know how to raise him (Brewin et al., 2008, p. 246).

Lack of service centralization. Treatment options for children with ASD are numerous and can include medication, applied behavioral analysis, elimination diets (e.g. gluten-free, casein-free diet), speech-language therapy, sensory integration therapy, occupational therapy, and social skills training. Although many treatments are available, the lack of service centralization results in parents navigating and coordinating multiple distinct services for their child (Brewin et al., 2008). Service providers may not communicate between each other, leaving parents to assume the role of the organizational agent. Furthermore, parents of children with ASD may lack knowledge concerning which treatments are considered best practices within the field. Umbarger (2007) reported that there is a current lack of research support for current ASD interventions including restrictive diets (e.g., gluten-free, casein-free), chelation (administering chemicals into the body to remove metal agents such as mercury), facilitated communication, auditory integration training, secretin (administering a hormone into the body that increases the production of liver bile, pancreatic digestive fluids, and stomach pepsin), and dolphinassisted therapy. Only 10% of children with an ASD receive applied behavior analysis (ABA), considered to be one of the most evidence-based interventions for ASD (Ruble, Heflinger, Renfrew, & Saunders, 2005). This is particularly significant, when considering that ABA has also been shown to reduce parental stress while the child with ASD is being treated (Smith, Groen, & Wynn, 2000).

Counseling Interventions for Parents of Children with ASD

Families of children with ASD face numerous obstacles and stressors in the home and community. With so many obstacles to face and so little assistance, parents of children with an ASD can feel overwhelmed. Many parents believe they are unable to provide for their children, which can leave them feeling helpless. Families are in need of a variety of services to assist them in caring for their child with ASD. The following counseling interventions are grouped into the three categories of intrapersonal, interpersonal, and social interventions to parallel the challenges cited above.

Intrapersonal Interventions

Coping skills for parental stress and negative mood. Families can receive information about how

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their stress level can interfere with their emotional health. Pottie and Ingram (2008) studied daily stress, well-being, and coping in parents of children with ASD. Participants received eleven different coping interventions. Higher levels of parental positive mood were associated with positive reframing (i.e. redefining family situational stress), emotional regulation (constructively controlling or expressing emotions), and compromise. In a study by Luther et al. (2005), the use of positive reframing was found to be the most successful method of coping for families of children with ASD. Reframing helps families in appreciating the uniqueness of the family member with ASD and expressing their love for them. In Pottie and Ingrams (2008) study, lower levels of daily positive mood were associated with escape, blaming, helplessness, and withdrawal coping strategies in parents with children with ASD. Twoy et al. (2007) found that parents of children with ASD scored twice as high in avoidance coping than the control group. Sixty-nine percent of parents watched television during stressful periods, and 87% believed that their problems would go away if they waited long enough. This belief was associated with a lack of confidence in the ability of parents to alter outcomes for their child. Problem-focused coping strategies, defined as managing daily stressors like child aggression or sleep disturbances, were associated with both increased positive and increased negative mood (Pottie & Ingram, 2008). Problem-focused coping responses may not always be adaptive, and some problems are not amenable to change, such as repetitive child behaviors and lack of societal acceptance (Twoy et al., 2007). It is therefore likely that nondirective counseling and skills training in emotional regulation are more effective in helping parents than problem solving approaches. Further research in this area is needed. Psychoeducation for ambiguous loss. Feelings of guilt may result from caregivers blaming themselves for their childs ASD diagnosis. Mothers may question whether they did something wrong during pregnancy. Due to ambiguous loss (Boss, 2006), many parents continue through the grieving process as they struggle to accept that their child is unlikely to be cured. Psychoeducation may be useful in assisting parents to understand the cyclical nature of the grieving process and move towards acceptance of their childs diagnosis without self-blame.

Interpersonal Interventions

Parent education. Parents may also need professional guidance with planning daily family life to accommodate the child with ASD. The demands of the child with ASD often take precedence over other members of the family, which may lead to the development of resentments within the family. Parents can be assisted in scheduling time with each other and with the other siblings to help reduce resentments caused by the allocation of more time and resources to the child with ASD. Parent education could address issues such as parental enabling, parental modeling, reducing conflict between siblings, and reducing parental conflict. In regards to the latter, couples counseling may also be indicated to improve family functioning by reducing levels of parental stress in families of children with ASD.

Social Interventions

Parent support groups. In periods of high marital stress, sibling relational satisfaction remained high if the family sought informal social support (Rivers & Stoneman, 2003). This social support is best sought in informal support group settings that are traditionally more focused on information sharing than typical therapeutic interventions. Experienced parents can mentor the less experienced, and all can benefit from the sharing of effective resources and interventions for children with ASD. In a recent Internet survey, the most common source of information and support for parents was found to be other parents of children with ASD (Mackintosh, Myers, & Goin-Kochel, 2006). Schwichtenburg and Poehlmann (2007) found that nearly 50% of parents surveyed indicated that they attended or were interested in parent support groups. Counselors can link parents into existing support groups in their community, organize and lead support groups themselves, or provide guidance on how the parent can establish a support group and promote awareness of the group in the community. The utility of informal support groups stands in contrast to the questionable efficacy of group counseling approaches for parents of children with ASD. While support groups can provide peer guidance and mentoring though the complex maze of services and treatment options, group counseling traditionally focuses on therapeutic discussion of daily problems and ongoing stressors (Corey, 2008). Since many problems these families face are not

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easily solvable, groups that incorporate problem solving and psychotherapeutic elements may be susceptible to becoming a forum for complaining and maintaining negative emotional responses. This dynamic would be counter-productive. Pottie and Ingram (2008) found that social support coping actually increased negative mood on particularly stressful days. Group counseling for parents can also be fraught with organizational challenges. Bringing together parents for a group session is often difficult, since many children with ASD require constant supervision. It can be difficult to find a time or location that accommodates all people involved. This organizational burden is less pressing in support groups, where meeting in each others homes is more acceptable. Fewer boundary issues related to privacy and confidentiality are likely to occur in an information-sharing support group than a group counseling session. Assisting parents in working with other professionals. The consistently high-level of need placed on parents of a child with ASD can be exhausting and may lead to parental burnout. The possibilities of personal care assistants and respite workers should be explored. Families may benefit from a brief reduction in the daily stress of parenting a child with ASD. As in-home therapists and personal care assistants become involved in the childs treatment, Hillman (2006) suggested that parents may require guidance in establishing and maintaining appropriate boundaries with such professionals, particularly those who work in the home. Parents may feel encroached upon when professionals involved in the childs care witness parental depression, are exposed to family secrets, or intervene during conflicts with other family members. Parents can be prepared to discuss their need for privacy and verbalize their concerns more effectively with in-home professionals. Furthermore, parents may be unaware of the unspoken boundaries in professional relationships; they may expect for the professional to assist with babysitting or engage in informal socializing (Hillman, 2006). Counselors can provide a forum for discussing what constitutes an appropriate expectation for professionals working within the home setting. Preparing for transitions. Counselors must also help families to address feelings of loss from the traditionally high turnover rates of direct-care professionals. Children with ASDs struggle with adjusting to schedule changes, and thus the reduction of service hours or transition to another service

provider can be difficult. This is particularly problematic when a service ends abruptly, such as when in-home therapy runs its course and will no longer be funded. These transitions can be prepared for ahead of time, and the parents can be instructed in ways to comfort, empathize, and support the child when transitions occur. Communicating with the school system. Parents need further guidance in interfacing with the school system. For example, parents must be aware of any interventions that the child is receiving, and be encouraged to reinforce important behavior changes and skills learned in the school setting. Long-term sustainability of these behavior changes and learned skills can only be achieved if they are generalized to other environments such as the home setting (Sallows & Graupner, 2005). Parents may be unaware of how they can reinforce school interventions in their home environment. They may also be unaware of this need for consistency between settings. The counselor could help parents to comprehend this need. Furthermore, parents may be unfamiliar with their childs legal rights regarding Individualized Education Plans (IEP), or feel that their childs IEP services are not being adequately addressed. School counselors have a particularly strong opportunity to facilitate relationships between parents and school professionals (e.g., teachers or specialists). Counselors and school counselors can also advocate for any needed services that the child with ASD needs within the school system or community, and teach parents to self-advocate.

Summary
Families of children with ASD experience intrapersonal, interpersonal, and social challenges. Parents of children with ASDs face increased stress from their childs impaired daily living skills (e.g., toileting, eating, and sleeping). They face financial burdens, along with the associated fringe costs such as difficulty with sustaining employment. These parents struggle to navigate the lack of service centralization and choose from an abundance of treatment options. Parents of children with ASDs contend with sibling rivalry and marital stress. They confront the societal stigma of raising a child with an ASD. Parents also face poor long-term outcomes for their child, and their hope for a cure may trigger the recurrent cycle of ambiguous loss.

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Counselors can provide the needed assistance for families struggling to raise their child with an ASD. Intrapersonally, counselors can offer stress management, emotional regulation exercises, and coping skills training. Supportive techniques such as active listening and feedback appear to be more effective than problem-solving approaches when supporting parents of children with an ASD. Counselors can help parents to address ambiguous loss reactions for the disabilities of their child, and use positive reframing techniques to encourage parents in openly displaying love and appreciation for their child. Interpersonally, counselors can offer parent education and couples counseling. Socially, counselors can refer parents to existing support groups that provide guidance through the maze of treatment options available in the community, or consider organizing and leading support groups themselves. Counselors can help parents interact more effectively with other professionals involved in their childs care. Finally, counselors can advocate for needed services, and teach parents to self-advocate. Thomas A. Field, doctoral student in the Department of Graduate Psychology at James Madison University and a mental health counselor and counselor-in-residence with Child & Adolescent Psychiatry, CENTRA. Malayna R. Ford is an intensive in-home clinician and counselor-inresidence with Child & Family Services, Central Virginia Community Services. Jeanne D. Booth is an Associate Professor in the School of Education and Human Development at Lynchburg College. Correspondence concerning this article may be emailed to Thomas Field at fieldta@jmu.edu

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