Autism and Accountability

John J. Pitney, Jr.

Claremont McKenna College
850 Columbia Avenue
Claremont, California 91711-6420
jpitney@cmc.edu

Prepared for delivery at the 2020 Annual Meeting of the American Political Science Association,
September 11, 2020.
 Abstract

We expect policymakers to be accountable to the public for their handling of public issues. The

case of autism presents fundamental difficulties. First, the boundaries of autism have shifted

over the years, and they remain contested. Second, there are multiple publics with radically

different views about the character of the issue. Third, there is no single “autism policy.”

Instead, the issue spans multiple issue areas where responsibility is diffused and the connections

between policy outputs and outcomes are difficult to establish. The paper ends with modest

recommendations for improving our knowledge base.

1
 “No damn cat, and no damn cradle.” – Kurt Vonnegut, Cat’s Cradle.

There are three big problems in analyzing accountability in autism public policy: the

words autism, public, and policy.

Start with autism, which itself has several layers of difficulty. The first is conceptual:

how we define it abstractly. The second is operational: the specific measurements by which

clinicians and officials determine who is autistic. The third is statistical: reckoning how many

people meet the criteria. And fourth is categorical: how we classify autism among public issues.

These difficulties set up another set of paradoxes about the “public.” Aside from the

nebulous “general public,” each issue has different sets of stakeholders, with different kinds of

interests. Which have a valid claim on policymakers’ attention? The well-funded and highly-

organized will get their message across, but are there others that officials should strain to hear?

There is no single “autism policy.” Autism is pervasive and permanent. It affects many

aspects of a person’s life from infancy through old age. A variety of bureaucracies at all levels

of government deliver services related to autism. Government organizations that do not provide

autism services must still adapt to the needs of autism people. Police and other first responders,

for instance, require training to deal with autistic people during times of stress. Although the

federal government has an important role, much of the action lies at the state and local level.

So who is accountable to whom, for doing what? How do we measure performance, and

what do we do about failure? Spoiler alert: there will be no simple, magical answers. But we

conclude with some general ideas that may lend a bit of clarity.

2
 Autism

Though there have always been autistic people, the concept of autism is fairly recent.

Donald Triplett, the first person ever to receive the diagnosis, is still alive as of this writing.1 In

1943, he and ten other children were the subject of a seminal article by psychiatrist Leo Kanner.2

The children, Kanner wrote, were unable to form the usual “affective contact” with other people,

preferring to focus on inanimate objects. For many years, clinicians and researchers assumed that

autism was rare, and the first two editions of the American Psychiatric Association’s Diagnostic

and Statistical Manual barely mentioned it. In 1980, the third edition (DSM-III) established

autism as a separate diagnostic category, listing six symptoms necessary for a diagnosis of

“infantile autism.” Over the next decade, as psychiatrists strove to make their field more

systematic, they developed means of quantifying the observations and interviews that would

inform autism diagnoses.

In 1994, the fourth edition of the manual (DSM-IV) had broader criteria than DSM-III.

People who would have had a different diagnosis – or none at all ---could now receive one of

four diagnoses: autistic disorder, Asperger’s disorder, childhood disintegrative disorder, or the

catch-all “ pervasive developmental disorder not otherwise specified” (PDD-NOS). Nineteen

years later, the fifth edition (DSM-5) merged the four categories into one: “autism spectrum

disorder” or ASD.3 According to the new manual, autism symptoms fall into two categories:

persistent deficits in social communication and interaction, and restricted, repetitive patterns of

1
Leo Kanner (below) identified him as “Donald T.” For an account of how his identity came to light nearly 70
years later, see: John Donvan and Caren Zucker, “Autism’s First Child,” The Atlantic, October 2010,
https://www.theatlantic.com/magazine/archive/2010/10/autisms-first-child/308227.
2
Leo Kanner, “Autistic Disturbances of Affective Contact,” Nervous Child 2 (1943): 217-250. Online:
https://simonsfoundation.s3.amazonaws.com/share/071207-leo-kanner-autistic-affective-contact.pdf..
3
The Association substituted Arabic numerals for Romans so that it could more easily designate revisions: DSM5.1,
DSM5.2, and so on.

3
behavior.4 The word spectrum is important here because the diagnosis applies to a diverse array

of people. Some are nonverbal and have severe intellectual disabilities. Others are talkative and

academically accomplished. Some scientists think that advances in genetics will someday reveal

multiple “autisms,” each with a distinct set of symptoms and life courses.5 For now, we just

know that autism is diverse. Professor Stephen Shore of Adelphi University, an expert on autism

who is also an autistic person, puts it this way: “If you’ve met one person with autism, you’ve

met one person with autism.”6

There is no such thing as “looking autistic.” Without any external physical

characteristics, as there are with Down Syndrome, ASD is an “invisible disability.” Scientists

have not yet developed a brain scan or blood test that can reliably diagnose it. As has been the

case all along, the only way to label someone as autistic is by studying behavior through

observation and interviews. Even when well-trained people try to apply standard criteria to what

they see and hear, they may come up with different results. For instance, a recent study has

raised doubts about the reliability of a widely-used diagnostic test, the Autism Diagnostic

Observation Schedule (ADOS). It found that switching clinicians could change a child’s scores

and thus influence the diagnosis.7

Uncertainty about diagnosis contributes to uncertainty about prevalence, that is, the share

of the population that is autistic. There are various estimates of prevalence, but no “hard count”

4
Centers for Disease Control and Prevention, “Diagnostic Criteria for 299.00 Autism Spectrum Disorder,”
https://www.cdc.gov/ncbddd/autism/hcp-dsm.html.
5
Anne Masi, Marilena M. DeMayo, Nicholas Glozier, and Adam J. Guastella, “An Overview of Autism Spectrum
Disorder, Heterogeneity and Treatment Options,” Neuroscience Bulletin 33 (April. 2017),
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5360849.
6
“Leading Perspectives on Disability: a Q&A with Dr. Stephen Shore,” Lime Connect, March 22, 2018,
https://www.limeconnect.com/opportunities_news/detail/leading-perspectives-on-disability-a-qa-with-dr-stephen-
shore.
7
Elizabeth B. Torres et al., “Hidden Aspects of the Research ADOS Are Bound to Affect Autism Science,” Neural
Computation 32 (March 2020), https://www.mitpressjournals.org/doi/full/10.1162/neco_a_01263.

4
of the number of people with autism. The latest (2016) prevalence estimate, by the Autism and

Developmental Disabilities Monitoring (ADDM) Network, is 18.5 per 1,000 children aged 8

years.8 That figure equates to one child in every 54. The data come from 10 states, and there is

considerable variation, from 13.1 per 1,000 children (one in 76) in Colorado to 31.4 per 1,000

(one in 32) in New Jersey. So does New Jersey have much more autism than Colorado, or does it

just do a better job of finding it? That question is not merely academic. In the latter case, New

Jersey could be a role model for other states to follow. In the former case, it may be suffering

from environmental problems that other states would want to avoid. We do not know for sure.9

Despite this uncertainty, some people are sure that prevalence has risen sharply over the

years. “So what’s going on with autism?” said President Trump in 2017. “When you look at the

tremendous increases, really, it’s such an incredible — it’s like really a horrible thing to watch,

the tremendous amount of increase.”10 A superficial glance at the numbers would seem to back

up this comment. ADDM’s 2016 national estimate is about 10 percent higher than its 2014

estimate and 175 percent higher than its first estimates in 2000 and 2002. Also consider statistics

on special education. These data are not strictly comparable because an “educational

determination” of autism is different from a diagnosis, and schools do not have to follow the

DSM. Nevertheless, one can see how the numbers create the image of an “autism epidemic.”

Between school years 2000-01 and 2018-19, the number of students receiving special education

8
Matthew J. Maenner et al., “Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism
and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2016,” Morbidity and Mortality
Weekly Report, March 27, 2020, https://www.cdc.gov/mmwr/volumes/69/ss/ss6904a1.htm
9
Sarabeth Broder-Fingert, Christopher R. Sheldrick and Michael Silverstein, “The Value of State Differences in
Autism When Compared to a National Prevalence Estimate,” Pediatrics 142 (December 2018),
https://pediatrics.aappublications.org/content/142/6/e20182950.
10
“Remarks by President Trump at Parent-Teacher Conference Listening Session,” February 14, 2017,
https://www.whitehouse.gov/briefings-statements/remarks-president-trump-parent-teacher-conference-listening-
session/.

5
services under the autism category rose from 93,000 (0.2 percent of total enrollment) to 762,000

(1.5 percent of total enrollment).11

These apparent increases are misleading. Physicians and members of the general public

are more aware of autism than they were in the past. In 2006, the American Academy of

Pediatrics recommended routine ASD screening for toddlers, and one recent study found that 73

percent received such screening at their 18-month or 24-month checkups.12 This screening has

probably led to the identification of many autistic children who would have gone undiagnosed in

the past. Since the passage of the 1990 Individuals with Disabilities Education Act (IDEA),

parents have learned that an educational determination of autism can provide their children with

better services than they might otherwise get. Accordingly, more have exercised their statutory

right either to request an evaluation by the school, or to arrange for an independent evaluation at

their own expense. And over the past twenty years, all 50 states have required insurance

companies to provide or offer coverage of at least some autism-related services.13 Such coverage

typically requires and includes a formal diagnosis.14 Parents with concerns about their children

therefore have an incentive to seek out professionals who can make such diagnoses.

(Pediatricians often make referrals.) Accordingly, most researchers believe that the “autism

epidemic” is largely a product of changes in the attitudes and behavior of parents and doctors.15

11
National Center for Education Statistics, “Children 3 to 21 years old served under Individuals with Disabilities
Education Act (IDEA), Part B, by type of disability: Selected years, 1976-77 through 2018-19,” Digest of Education
Statistics, 2019 Tables and Figures, https://nces.ed.gov/programs/digest/d19/tables/dt19_204.30.asp.
12
Paul S. Carbone, et al., “Primary Care Autism Screening and Later Autism Diagnosis,” Pediatrics 146 (August
2020), https://pediatrics.aappublications.org/content/146/2/e20192314.
13
Blythe Bernard, “Autism Insurance Coverage Now Required In All 50 States,” Disability Scoop, October 1, 2019,
https://www.disabilityscoop.com/2019/10/01/autism-insurance-coverage-now-required-50-states/27223.
14
Cary E. Trump and Kevin M. Ayres, “Autism, Insurance, and Discrimination: The Effect of an Autism Diagnosis
on Behavior-Analytic Services,” Behavior Analysis in Practice 13 (March 2020),
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7070133.
15
Jessica Wright, “The Real Reasons Autism Rates Are Up in the U.S.,” Scientific American, March 3, 2017,
https://www.scientificamerican.com/article/the-real-reasons-autism-rates-are-up-in-the-u-s.

6
 There might also have been a true increase in autism prevalence. Peer-reviewed studies

have produced a long and growing list of potential causes and correlates, including paternal age,

maternal diabetes, and prenatal exposure to a variety of toxic substances.16 But the scope of any

true increase remains as unclear as its sources.

All of the above data involve children. Our knowledge of autistic adults is even murkier.

Many grew up when medical professionals knew little about autism and schools did not have to

provide special education services. Students today enjoy the protections of IDEA only until their

22d birthday. At that point, no federal law requires states and localities to provide them with

services, and there is no standard method to keep track of them. Patricia M. Dietz and colleague

sum up the obstacles to counting autistic adults:

To date, an empirical study of adult ASD prevalence in the U.S. has not been

accomplished, perhaps because any single approach to ascertain adult ASD has

challenges. There are no psychometrically validated tests of ASD for adults, which leads

to uncertainty for studies using tests designed for children, such as the Autism Diagnostic

Observation Schedule. In addition, mixed methods are likely needed in order to reach

populations living independently and in group settings. A subset of persons might only be

identified through the review of service records of those being served in group settings.

Individuals with ASD who live independently may be disinclined to participate in a

survey if recruited via phone or in person. Adults with ASD may be more difficult to

recruit because they may not be enrolled in services or may not receive services in a wide

For links to some of the literature, see my blog post, “Cannabis Use as Risk Factor,” Autism Politics and Policy,
16

August 11, 2020, http://www.autismpolicyblog.com/2020/08/cannibis-use-as-risk-factor.html.

7
 variety of settings (e.g., schools, health care providers, community based entities)

resulting in challenges to comprehensive recruitment efforts.17

Over time, the picture might come into sharper focus. More and more adults

will have grown up with the autism label, either through diagnosis or educational determination.

Because of laws such as IDEA and the Americans with Disabilities Act (ADA), they may be

more likely to come forward than those in earlier generations. “Members of the ADA. generation

are quicker than earlier ones to claim disability as a crucial part of identity — and with pride,”

writes journalist Joe Shapiro. “The ADA after all, erased some of the stigma. Now, it’s not just

those with evident physical or sensory disabilities who say they are part of a disability civil rights

movement, but younger people and those with invisible disabilities, too.”18 For all the positive

signs, a good deal of stigma lingers, and an unknown number of people on the spectrum may

prefer that their autism remain invisible.

Whatever the criteria and the number of Americans who belong to the category, there are

different ways to “frame” or characterize autism.19 For a long time, the dominant frame was that

of disease. To treat autism as a disease is to focus policy on the search for a cure. One of the

first national autism organizations was “Cure Autism Now.” In 2013, President Obama said,

“we're still unable to cure diseases like Alzheimer's or autism or fully reverse the effects of a

stroke.”20 After decades of research, however, there is no FDA-approved medication for the core

17
Patricia M. Dietz, “National and State Estimates of Adults with Autism Spectrum Disorder,” Journal of Autism
and Developmental Disorders, May 10, 2020, https://link.springer.com/article/10.1007/s10803-020-04494-4.
18
Joseph Shapiro, “Disability Pride: The High Expectations of a New Generation,” New York Times, July 17, 2020,
https://www.nytimes.com/2020/07/17/style/americans-with-disabilities-act.html.
19
For a discussion of issue framing, see: Deborah Stone, Policy Paradox: The Art of Political Decision Making, 3d.
ed. (New York: W.W. Norton, 2012), ch. 11.
20
Barack Obama, Remarks on Science and Technology, April 2, 2013, Online by Gerhard Peters and John T.
Woolley, The American Presidency Project https://www.presidency.ucsb.edu/node/303657.

8
symptoms of autism.21 Many parents continue to search for a “cure,” and they are easy marks for

con artists hawking substances that never work and often do serious harm. One infamous

example involved “Miracle Mineral Solution” -- a toxic bleach. In 2020, it made the news again

when federal prosecutors caught its makers rebranding it as a cure for COVID-19.22

By contrast, there is evidence for programs based on applied behavior analysis (ABA).

An intensive intervention, taking up to 40 hours a week, ABA uses the principles of operant

conditioning to change the behavior of autistic children.23 In the hands of a skilled ABA

provider, autistic children often make measurable improvement in social communication and

reduction of repetitive behavior. Proponents of ABA avoid words such as “cure,” preferring to

speak of “recovery” as the best-case outcome. In this sense, recovery means that the behavior of

autistic children has changed to the extent that they no longer meet the criteria for an ASD

diagnosis. Researchers have found that recovery is possible, at least for a small subset of autistic

children.24 The lead author of one study offers an important caveat: “But by and large, these

children continue to struggle with daily life. Almost all of them still have to contend with

language and learning disabilities and a variety of emotional and behavioral problems.”25

A second frame, which is not mutually exclusive with the first, is disability. This frame

takes the condition as a given, and it focuses on accommodation rather than cure. Its language

21
Centers for Disease Control and Prevention, “Treatment and Intervention Services for Autism Spectrum
Disorder,” September 23, 2019, https://www.cdc.gov/ncbddd/autism/treatment.html.
22
U.S. Attorney’s Office, Southern District of Florida, “Father and Sons Charged in Miami Federal Court with
Selling Toxic Bleach as Fake “Miracle” Cure for Covid-19 and Violating Court Orders,” July 9, 2020,
https://www.justice.gov/usao-sdfl/pr/father-and-sons-charged-miami-federal-court-selling-toxic-bleach-fake-
miracle-cure.
23
Srinivas Medavarapu et al,. “Where is the Evidence? A Narrative Literature Review of the Treatment Modalities
for Autism Spectrum Disorders,” Cureus 11 (January 2019),
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6424545.
24
Lisa Shulman, et al., ”When an Early Diagnosis of Autism Spectrum Disorder Resolves, What Remains?”
Journal of Child Neurology 34 (June 2019), https://journals.sagepub.com/doi/10.1177/0883073819834428.
25
“Some Children Can 'Recover' From Autism, But Problems Often Remain, Study Finds,” Science Daily, March
12, 2019, https://www.sciencedaily.com/releases/2019/03/190312075923.htm.

9
derives less from medicine than from law. The Americans with Disabilities Act was a civil

rights statute, which President George H.W. Bush emphasized when he signed it. Even after the

1964 Civil Rights Act, he said, “people with disabilities were still victims of segregation and

discrimination, and this was intolerable. Today's legislation brings us closer to that day when no

Americans will ever again be deprived of their basic guarantee of life, liberty, and the pursuit of

happiness.”26 IDEA, though technically not a civil rights law, also creates legally enforceable

rights that often require the involvement of attorneys.

A third frame is difference. A product of the broader neurodiversity movement, this

frame defines autism, like other kinds of atypical neurological development, as a normal human

difference that we should all respect in the same way as other human differences.27 Those who

operate in this frame generally accept the idea of disability, but interpret it through a social

model. Disability, from this point of view, is a mismatch between the person and the social

context. People are disabled not only because of their impairment, but because of society’s

failure to accommodate their needs “In other words,” writes Jacquiline den Houting, “disability

results not from autism itself but instead from living in a society which tends to be physically,

socially and emotionally inhospitable towards autistic people.”28

Those who regard autism as a difference often make common cause with other disability

groups. At the same time, they vehemently reject the idea of “cure” or “recovery.” A number of

people on the spectrum regard their autism as a part of their identity, much like their sexual

26
George Bush, “Remarks on Signing the Americans with Disabilities Act of 1990,” July 26, 1990, Online by
Gerhard Peters and John T. Woolley, The American Presidency Project,
https://www.presidency.ucsb.edu/node/264870.
27
Dana Lee Baker, The Politics of Neurodiversity: Why Public Policy Matters (Boulder, Colorado: Lynne Rienner,
2011).
28
Jacquiline den Houting, “Neurodiversity: An Insider’s Perspective,” Autism 23 (2019),
https://journals.sagepub.com/doi/pdf/10.1177/1362361318820762.

10
orientation. And some autistic advocates liken efforts to “cure” or “recover” autistic children to

gay conversion therapy. The analogy is not as hyperbolic as it may sound. Ivar Lovaas, a

UCLA psychologist who helped develop ABA, also participated in the Feminine Boy Project,

which sought to use operant conditioning to extinguish feminine behavior in young males.29

Disagreements about autism do not merely concern the means to agreed-upon ends. They

reach to the very definition of the issue and the goals of public policy. The fights reach deep and

run hot. Autism politics is like faculty politics on crystal meth.

Autism and Its Publics

Who is the “public” in autism public policy? Obviously, one answer is the general

public, the people who elect policymakers and pay taxes. Whether or not they have autism or

autistic family members, they do have a material stake in the issue. One recent study measured

the social coat of autism, including such things as health care, education, social services, and lost

productivity of family caregivers. The authors estimated the average per capita lifetime cost of

ASD in the United States at $3.6 million in 2019 dollars. Assuming about two million diagnoses

between 1990 and 2019, they reckon that the total lifetime social cost of this cohort would top

$7 trillion.30 Such estimates are subject to methodological criticisms. And many advocates

scorn the notion of “the social cost of autism,” saying that it effectively labels every autistic

person as a social debit. They argue that these figures actually measure the cost of discrimination

29
Steve Silberman, Neurotribes: The Legacy of Autism and the Future of Neurodiversity (New York:
Penguin/Avery, 2016), 319-32.
30
Janet Cakir, Richard E.Frye, and Stephen J. Walker, “The Lifetime Social Cost of Autism: 1990–2029,” Research
in Autism Spectrum Disorders 72 (April 2020),
https://www.sciencedirect.com/science/article/abs/pii/S1750946719301904.

11
and policy failure. Whatever one’s perspective, it is clear that the issue has economic and social

consequences for everybody.

Nevertheless, ASD has low political salience with the general public, never showing up

in open-ended surveys that ask respondents to name important national problems.31 When

pollsters pose questions about autism, they are usually gauging belief in the discredited link to

vaccination. (In a 2019 survey, 18 percent of respondents incorrectly said that it is very or

somewhat accurate to say that vaccines cause autism.32)

The politically relevant publics consist of people with more direct involvement with the

issue. This situation is familiar to students of public policy. As Marmor and Marone wrote in

their 1980 study of health system agencies:

The puzzles of representation are exacerbated in circumstances that stimulate

representation without explicitly structuring it -- when there are no elections, no clearly

defined channels of influence, or only murky conceptions of constituency. The politics of

regulatory agencies or regional authorities provide examples. Though representatives of

groups commonly press their interests within such contexts, there are no systematic

canvasses of the relevant interests, such as geographically based elections provide. It is

unclear who legitimately merits representation, how representation should be organized,

or how it ought to operate.33

For a long time, the most prominent stakeholders were the parents of autistic children. In

1965, Bernard Rimland and Ruth Sullivan founded the National Society for Autistic Children.

31
See, for instance, the compilation at https://www.pollingreport.com/prioriti.htm.
32
Dominik Stecula, Ozan Kuru, and Kathleen Hall Jamieson., “How Trust In Experts and Media Use Affect
Acceptance of Common Anti-Vaccination Claims,” Misinformation Review, January 14, 2020,
https://misinforeview.hks.harvard.edu/article/users-of-social-media-more-likely-to-be-misinformed-about-vaccines.
33
Theodore R. Marmor and James A. Morone, “Representing Consumer Interests: Imbalanced Markets, Health
Planning, and the HSAs,” Milbank Memorial Fund Quarterly: Health and Society 58 (1980), reprint at
https://onlinelibrary.wiley.com/doi/full/10.1111/j.1468-0009.2005.00431.x.

12
(Twenty-two years later, it changed its name to the Autism Society of America to acknowledge

autistic teens and adults.) The group praised Lovaas’s work on ABA, which held out the

promise of “recovery.” In its early years, it was mostly a chapter-based self-help group for

parents. Despite playing a part in a 1975 developmental disabilities law and some other

measures, it lacked a strong voice in national politics. In the late 1990s, it was spending a meager

$20,000 a year on lobbying.34

The age-old collective action problem was especially challenging for autism families,

who tend to have greater material hardship than families of children with other special health

care needs.35 After haggling with bureaucracies, providing care at home, and trying to earn a

living, many parents did not have the time or resources for efforts to change the laws. And if they

did try to organize, they hit another barrier: finding one another. In the 1990s, the Internet

helped autism parents make connections and create networks of stakeholders.36 New groups

came onto the scene. In 1995, autism parents Portia Iversen and Jon Shestack founded Cure

Autism Now (CAN), which raised money for autism research and lobbied for federal support.

CAN’s efforts contributed to the passage of the Children’s Health Act of 2000 (P.L. 106-310).37

The new law mandated the establishment of the Interagency Autism Coordinating Committee

(IACC0 to coordinate federal autism research and programs. Shestack lobbied for the law’s

34
Open Secrets, “Autism Society of America,” 2009. Online:
http://www.opensecrets.org/lobby/clientsum.php?id=D000047521&year=2009.
35
Kristy A. Anderson et al., “National Autism Indicators Report: Children on the Autism Spectrum and Family
Financial Hardship,” Philadelphia, PA: Life Course Outcomes Program, A.J. Drexel Autism Institute, Drexel
University, May 2020, https://drexel.edu/autisminstitute/news-events/news/2020/June/National-Autism-Indicators-
Report-2020/
36
Karen Reznek, “LISTSERV 25th Anniversary: LISTSERV Stories,” May 17, 2011. Online:
http://www.lsoft.com/news/listservstory.asp.
37
Chloe Silverman and Jeffrey P. Brosco, “Understanding Autism: Parents and Pediatricians in Historical
Perspective,” Archives of Pediatrics & Adolescent Medicine 161 (2007),
https://jamanetwork.com/journals/jamapediatrics/fullarticle/570026.

13
autism provisions and testified before a congressional subcommittee.38 As a movie producer (Air

Force One), he was in an unusual position to raise money and get attention.39

Even with famous supporters, interest groups must struggle for financial resources. One

remedy is patronage from government agencies, foundations, or wealthy individuals.40 For

autism, that patronage arrived in 2005. After learning that their grandson had autism, Bob and

Suzanne Wright founded Autism Speaks. As chairman and CEO of NBC Universal, Bob Wright

had the wealth and connections to help the new organization grow fast. It had an early victory

with the 2006 passage of the Combating Autism Act (P.L. 109-416), which authorized an

expanded federal role in autism research, prevention, and treatment. Autism Speaks was soon

raising millions of dollars, and by 2007, it had merged with CAN. It rapidly became best-known

group in the field, funding scientific research and increasing public awareness.

Parent advocacy faced some daunting challenges. One was factionalism. Some parents

looked for cures in various “biomedical interventions,” including supplements and special diets.

(There is no evidence that such approaches work.41) Bernard Rimland, author of a well-

respected 1964 book on autism, later promoted the “Defeat Autism Now” biomedical protocol,

which had scant scientific basis and eventually fell into disuse. After Andrew Wakefield linked

autism to vaccines in a 1998 article – later exposed as fraudulent – new antivaccine groups

cropped up. In 2000 came “Safe Minds,” short for “Sensible Action for Ending Mercury-

Induced Disorders.” In 2003, autism parents organized the National Autism Association to

38
U.S. Congress, House, Committee on Commerce, Subcommittee on Health and the Environment, Children’s
Health: Building Toward a Better Future, 106th Congress, 1st session, October 12, 1999.
39
Csar G.Sciorano, “Ms. Russo Goes to Washington,” USA Today, October 13, 1999, 2D.
40
Jack Walker, “The Origins and Maintenance of Interest Groups in America,” American Political Science Review,
77 (June 1983): 390-406.
41
Nila Sathe, Jeffrey C. Andrews, Melissa L. McPheeters, and Zachary E. Warren, “Nutritional and Dietary
Interventions for Autism Spectrum Disorder: A Systematic Review,” Pediatrics 139 (2017),
https://pediatrics.aappublications.org/content/early/2017/05/24/peds.2017-0346.

14
encourage self-help and promote “vaccine safety.” Two years later, Lisa and J.B. Handley

founded Generation Rescue to “cure” children whose autism purportedly started with vaccines.

Some elements of the antivax movement engage in personal harassment and other vicious tactics.

After the California Legislature tightened vaccine requirements for schoolchildren in 2019, one

antivax protester spattered the chamber of the State Senate with human blood.42

Factionalism led to internal organizational conflicts. Katie Wright, the daughter of Bob

and Suzanne Wright and mother of their autistic grandson, broke with Autism Speaks because it

did not fully embrace the vaccine theory. She joined the boards of antivax groups. On the other

side, senior executive Alison Singer quit Autism Speaks because she considered it too

accommodating toward the vaccine theory. She then founded her own group, the Autism

Science Foundation.

Parent organizations tended to embrace the disease frame, hence “Cure Autism Now,”

“Defeat Autism Now,” and the “Combating Autism Act.” This tendency triggered a reaction

from some autistic adults, who were starting to enter the issue arena. Until the 1980s, there were

few if any self-identified autistic people in the public sphere. By the 1990s, some were speaking

out. One was Jim Sinclair, who wrote:

Autism isn't something a person has, or a "shell" that a person is trapped inside. There's

no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it

colors every experience, every sensation, perception, thought, emotion, and encounter,

every aspect of existence. It is not possible to separate the autism from the person--and if

42
Taryn Luna, “Vaccine Bill Protester Threw Blood on California Senators, Investigation Confirms,” Los Angeles
Times, October 2, 2019, https://www.latimes.com/california/story/2019-10-02/vaccine-law-protester-blood-
california-state-senate.

15
 it were possible, the person you'd have left would not be the same person you started

with….Therefore, when parents say,

I wish my child did not have autism,

what they're really saying is,

I wish the autistic child I have did not exist, and I had a different (non-autistic) child

instead.

Read that again. This is what we hear when you mourn over our existence. This is what

we hear when you pray for a cure.43

In 2006, 19-year-old Ari Ne’eman, who had a diagnosis of Asperger’s, co-founded the

Autistic Self Advocacy Network (ASAN) in response to what members saw as the absence of

autistic voices in policy debates. As a motto, the group adopted a saying from the broader

disability rights movement, “Nothing About Us Without Us.” ASAN criticized Autism Speaks

for its emphasis on cure over accommodation. In 2014, when the Combating Autism Act was up

for congressional reauthorization, the group waged a hashtag campaign, #StopCombatingMe. In

response, Congress gave the law a new name, the Autism Collaboration, Accountability,

Research, Education and Support Act, or the Autism CARES Act. Another reauthorization

passed in 2019.

Individuals and groups supporting the difference frame have had modest success in

shifting research priorities from biology toward human services. They have also had some

impact on depictions of autism in the mass media. The ABC series The Good Doctor portrays an

43
Jim Sinclair, “Don’t Mourn for Us,” Our Voice, Volume 1, Number 3, 1993,
https://www.autreat.com/dont_mourn.html.

16
autistic surgeon, though a non-autistic actor plays the title role. One study finds modest

movement toward the neurodiversity perspective in news stories in The Washington Post.44

There has been pushback. In 2019, a group of parents founded the National Council on

Severe Autism (NCSA). The new organization aimed to deal with serious challenges in services,

housing, and policy facing families, caregivers and individuals affected by severe forms of

autism and related disorders.45 Said Jill Escher, the president of the new group: “Neurodiversity

advocates often speak of autism as a sort of benign cognitive difference, but let’s be clear:

research does not support this romanticized view …Autism, at least the disabling autism

affecting my children and others like them, is, quite frankly, a birth defect.”46 Amy Lutz, the

organization’s secretary, made a distinction between different types of autism: “We fully support

self-advocates pursuing the support that they need, but this is completely separate … You have

very mildly affected people on one end, who are college graduates, who are married with

children.” Lutz explained that NCSA focuses on the other end of the spectrum: “[a]dults who are

in diapers and helmets and arm braces to prevent them from hitting themselves in the face

hundreds of times an hour until they detach their own retinas.”47

There has been pushback to the pushback. “These are not the people who should be in

charge of this conversation,” said Shannon Des Roches Rosa, who edits a nonprofit autism news

site. “The NCSA is not on our kids’ side; they’re on the parents’ side.”48

44
“Noa Lewin and Nameera Akhtar,” Neurodiversity and Deficit Perspectives in The Washington Post’s Coverage
of Autism,” Journal of Disability and Society, March 13, 2020,
https://www.tandfonline.com/doi/abs/10.1080/09687599.2020.1751073?journalCode=cdso20.
45
National Council on Severe Autism, “New Advocacy Group Seeks Realistic Solutions for Severely Disabled
Autistics,” January 19, 2019, https://www.ncsautism.org/blog/2019/1/5/new-advocacy-group-seeks-realistic-
solutions-for-severely-disabled-autisticsnbsp.
46
Jill Escher, “A Primer on the Abnormal Neurobiology of Autism,” National Council on Severe Autism, June 15,
2020, https://www.ncsautism.org/blog//abnormal-neurobiolog.
47
Alisa Opar, “New Group Faces Backlash Over Its Goals for Severe Autism,” Spectrum, February 4, 2019,
https://www.spectrumnews.org/news/new-group-faces-backlash-goals-severe-autism.
48
Opar, “New Group Faces Backlash.”

17
 Broader questions arise from consideration of diverse perspectives of parents and autistic

people. Whose interests should have a seat at the table? And who speaks for whom? Every

autism organization engages in what McCoy and colleagues describe as “partial representation.”

This situation, they write, “occurs when an actor claims to represent a particular group of people,

but appropriately engages with only a subset of that group.”49

Some question the role of parents as political advocates for autistic children.50 Unless

they have autism themselves, parents have only a limited understanding of what it is like to be

inside their children’s skin. Benjamin, Ziss, and George write: “We need to at least entertain the

possibility that non-autistic people’s standards of happiness and success have less to do with

autistic people s own needs and desires than with the level of comfort and reassurance that non-

autistics experience when interacting with them.”51

There is no single “parent perspective.” As we have seen, some passionately espouse the

myth that vaccines cause autism, while others fight that point of view. Parental experiences, like

those of their children, are diverse. Parents of autism children with severe symptoms may worry

about wandering and personal hygiene. Those whose children have strong academic abilities

may worry about discrimination in college admissions. Jordan P. Richardson and Richard R.

Sharp write: “Differences in diagnostic identity shape long-term expectations, perceived needs,

and resource access, and thus may prompt self-advocates and parent-advocates to conceptualize

49
Matthew S. McCoy, et al. “Ethical Advocacy Across the Autism Spectrum: Beyond Partial Representation.”
American Journal of Bioethics 20 (2020),
https://www.tandfonline.com/doi/abs/10.1080/15265161.2020.1730482?journalCode=uajb20.
50
Here we are discussing advocacy in the political arena. Few would deny that parents should be able to make
decisions for their own minor children, regardless of disability status. With developmentally disabled adults, the
issue of guardianship or conservatorship is more controversial. But that issue is a separate topic beyond the scope of
this paper.
51
Elle Benjamin, Bethany E. Ziss and B. R. George, “Representation Is Never Perfect, But Are Parents Even
Representatives?” American Journal of Bioethics 20 (2020),
https://www.tandfonline.com/doi/abs/10.1080/15265161.2020.1730505.

18
autism in ways that are reflective of these differing expectations and experiences.”52 Some

parents may embrace the “difference” frame and adopt the language of neurodiversity.53

Anecdotal evidence suggests that most are sympathetic to the disease frame. One mother of a

child with severe symptoms told The Pittsburgh Post-Gazette:

In families with autism whose kids do really well, they get almost angry at people who

say we want a cure or want a change. I say to this one young man who always brings it

up to me, 'Look: if my son could be you, that would be a cure..' … I want that for my own

child, to tell you the truth. I would think I had gone to heaven if my child could be an

Asperger's child. But even for the Asperger's children, it's not normal. You can ask

everyone to accept you for who you are, but you are not in that straight and normal part

of the world.54

Parents seldom deny that accomplished autistic adults should represent themselves. But

some dispute whether they represent more severely-disabled autistic people. Sociologist Ginny

Russell describes the response: “Activists have stated the case for first-person representation:

that elsewhere in society we accept the idea that anyone who speaks for a group should be a

member of the group, and by that reasoning any spokesperson for autistic people should be

autistic.”55 Therein lies another point of disagreement. A parental rejoinder is that the

neurodiversity advocates are not “really” autistic, at least not in the same sense as autistic

52
Jordan P. Richardson and Richard R. Sharp, “Meaningful Fissures: The Value of Divergent Agendas in Patient
Advocacy,” American Journal of Bioethics 20 (2020), http://www.bioethics.net/2020/03/meaningful-fissures-the-
value-of-divergent-agendas-in-patient-advocacy.
53
M. Ariel Cascio, “Neurodiversity: Autism Pride Among Mothers of Children with Autism Spectrum Disorders,”
Intellectual and Developmental Disabilities 50 (2012),
https://meridian.allenpress.com/idd/article/50/3/273/8674/Neurodiversity-Autism-Pride-Among-Mothers-of.
54
Mark Roth and Julia Rendleman, “Mysteries of the Mind: Dealing with The Different Worlds of Autism,”
Pittsburgh Post-Gazette, October 6, 2013, https://www.post-gazette.com/news/science/2013/10/06/Mysteries-of-the-
Mind-Dealing-with-the-different-worlds-of-autism/stories/201310060004.
55
Ginny Russell, “Critiques of the Neurodiversity Movement,” in Autistic Community and the Neurodiversity
Movement: Stories from the Frontline, ed. Steven K, Kapp (London: Palgrave MacMillan, 2020),
https://link.springer.com/content/pdf/10.1007%2F978-981-13-8437-0_21.pdf.

19
children with severe intellectual impairments. One New Jersey parent wrote in 2013: “Anyone

with the mental and verbal ability to challenge autism research is not autistic on a scale that I

care to recognize.”56 Advocates of neurodiversity can reply to such claims in a couple of ways.

Some “low-functioning” nonverbal autistic people have revealed themselves to have keen

intellects as soon as assistive devices enabled them to express themselves.57 Conversely, “high-

functioning” autistic people live with serious challenges and encounter discrimination because of

how they talk and interact with others. In short, the neurodiversity advocates would say that

people across the autism spectrum really are all brethren.

We should not assume that autistic adults are monolithic in their opinions. Sam Fellowes,

a scholar who is on the spectrum, notes that some autistic people in the public sphere are critical

of neurodiversity perspectives. He writes that “there is a great deal of hostility and division

between pro-neurodiversity and anti-neurodiversity autistic individuals. Both sides seem to think

that the other side is harming autistic people, and sometimes even disparage the motives of their

opponents.”58

Analyses of the autism community tend to dwell on the conflicts between and among

parents and autistic people. But there is another set of stakeholders: “the autism industrial

complex.”59 Disability studies scholar Anne McGuire coined the term in a pejorative context,

but it can also serve as a useful analytical label. It refers to the individuals and organizations, in

both the public and private sectors, that provide goods and services related to autism. Consider,

56
James Terminiello, “Opinion: Expanded Definition of 'Autism' Goes Astray,” NJ.com, May 5, 2013,
https://www.nj.com/south-jersey-voices/2013/05/opinion_expanded_definition_of.html.
57
Robert Chapman and Walter Veit, “Representing the Autism Spectrum, “ American Journal of Bioethics, 20
(2020), https://www.tandfonline.com/doi/abs/10.1080/15265161.2020.1730495.
58
Sam Fellowes, “Additional Challenges to Fair Representation in Autistic Advocacy,” American Journal of
Bioethics 20 (2020), https://www.:tandfonline.com/doi/abs/10.1080/15265161.2020.1730514.
59
Anne McGuire, War on Autism On the Cultural Logic of Normative Violence (Ann Arbor: University of Michigan
Press, 2016), 126.

20
for instance, the field of education. Teachers and administrators have a vast array of lobbies and

professional groups: AASA (the School Superintendents Association), the Association of School

Business Officials International, Council of Administrators of Special Education, the National

Association of State Directors of Special Education, the National Association of Special

Education Teachers, the National Association of School Psychologists, and the National School

Boards Association, among others. Of course, the most powerful player in this group is the

National Education Association and its affiliates at the state level.

Such organizations have many advantages: expertise, longstanding relationships with

public officials and – in the case of the case of NEA – electoral clout. Their interests may clash

with those of parents or autistic students. In 2004, when Congress last reauthorized the

Individuals with Disabilities Education Act, educators sought to ease its procedural burdens –

which parents tended to see as an essential safeguard. Organizations representing teachers and

school administrators were far better organized than autism parents. In the end, the changes were

not as far-reaching as the parents had feared. But as one put it, “We jumped in front of a moving

train and we slowed it down. But we didn’t stop it.”60 Lately, these groups have again stepped

up their lobbying. Worrying about special education lawsuits resulting from disruption of

services during the COVID-19 pandemic, they have asked Congress for protection from some

provisions in the Individuals with Disabilities Education Act.61

The “industrial” part of “autism industrial complex” is an apt term. According to KPMG,

the autism services market generates annual revenues of at least $5 billion. The industry is

60
John J. Pitney, Jr. The Politics of Autism Navigating the Contested Spectrum (Lanham, Maryland: Rowman and
Littlefield, 2015), 84.
61
Corey Mitchell, “Schools Seek Cover From Special Education Lawsuits, But Advocates See Another Motive,”
Education Week, July 29, 2020,
https://blogs.edweek.org/edweek/speced/2020/07/schools_seeks_cover_from_special_education_lawsuits.html.

21
variegated, consisting both of multistate corporations and solo practitioners. All told, the industry

employs some 30,000 board-certified behavior analysts. 62 In 2015, a group of agency leaders

met to form the Council of Autism Service Providers, whose mission statement is clear:

While there are successful associations representing parents and self-advocates, the

priorities of these groups may not always align with the needs of provider agencies,

including the need to establish standards of care and treatment. CASP and its member

organizations recognize that a failure to act may be risky. Consumers and payers are

demanding results and CASP is working to establish standards and define expected

outcomes of quality and evidence-based treatment.63

With at least three diverse sets of stakeholders – parents, autistic people, and providers –

who makes up the “public” that policymakers should heed? One possible answer is “all of the

above.” In this spirit, Congress provided for public representation on the Interagency Autism

Coordinating Committee, which provides information to the public and advice to the Secretary of

Health and Human Services. In addition to federal officials, the statute provides for three

members from each of the following groups:

• Individuals with a diagnosis of ASD;

• Parents or guardians of autistic people;

• Representatives of leading autism research, advocacy, and service organizations.64

The makeup of IACC represents a good-faith effort to provide voice to a range of views

and interests. Nevertheless, it has a minimal impact on autism public policy. As an advisory

62
KPMG Corporate Finance LLC, “ABA Therapy M&A,” February 2020,
https://corporatefinance.kpmg.us/content/dam/corporatefinance/en/pdf/2020/aba-therapy-ma-overview.pdf.
63
Council of Autism Service Providers, “Our Mission,” https://casproviders.org/about-us/.
64
42 USC 280i-2: Interagency Autism Coordinating Committee,
https://uscode.house.gov/view.xhtml?req=granuleid:USC-prelim-title42-section280i-2&num=0&edition=prelim

22
committee, IACC lacks budgetary power. Its reports contain useful data about autism research,

but it does not direct that research. More important, federal research activities constitute a tiny

sliver of American public policy toward autism.

Policy and Accountability

According to Marmor and Morone, accountability means “answering to” or more

precisely, “having to answer to.”65 In autism policy, who is to answer to whom, and for what?

We have seen that the “whom” part of this question is factious and fractious, with contrary views

of the “what” part. Examination of the “who” part makes the matter even more complicated.

Public policy toward autism spans multiple issue areas at the local, state, and federal levels. Each

person who makes or implements public policy is responsible for only a tiny part of the whole,

so it is hard to hold that person accountable for outcomes. That is especially true if we define

“outcome” as the life course of autistic people, which is usually unknowable for many years.

This paper cannot catalog every kind of autism policy, but a few examples will make the

point. Start with education. The Individuals with Disabilities Education Act (IDEA) is the

primary federal statute on special education. As a condition of federal aid, the law requires

school districts to provide students with disabilities a free appropriate public education (FAPE)

in the least restrictive environment (LRE). The vehicle for defining FAPE in specific cases is

the Individualized Education Program (IEP), a document that describes the child’s present level

of performance and specifies the services that the school district will provide.

The key word is individualized. The process has the laudable goal of ensuring that each

student gets custom-fit schooling. In a sense, it means that each of the nation’s 14,000 school

65
Marmor and Morone, “Representing Consumer Interests.”

23
districts has a separate policy for each of its special-education students. They do not draft these

policies in open forums where diverse publics can weigh in. The IEP meetings, which occur at

least once a year and take place in private, include parents, teachers, administrators, and other

school employees. In theory, parents can use IEP meetings to hold the school district accountable

for what it has done and what it plans to do. In practice, they face daunting constraints. The

education professionals are “repeat players.” Their experience and expertise give them an edge

that the parents have a hard time overcoming, even if they are well-educated and can afford legal

counsel. One parent told Andrew Panico: “I don't like feeling powerless and because there's such

a bureaucracy with the IEP process and there's laws and there's rules, I felt very powerless. … I

felt bamboozled by everybody, from the school secretary, all the way up this whole food chain.

Where I felt like everybody was taking advantage of the situation and just saying, `Well, that's

just the way it is, or that's the way we've always done it here.’”66

Parents are often unhappy with IEPs. IDEA does provide methods of dispute resolution,

but many parents are reluctant to use them. They cite such burdens as the cost of attorneys and

expert witnesses, the school district’s knowledge and financial resources, and the need to take

time off from work.67 For a long time, there was an additional obstacle: the US Supreme

Court’s Rowley decision, which held that FAPE only had to confer some educational benefit, and

nothing more.68 Parents complained that this low bar made it easy for school districts to prevail

in due-process hearings. In a 2017 decision, the Court revisited the issue. It ruled that an IEP

could not just be barely adequate but rather, “reasonably calculated to enable a child to make

66
Andrew A. Panico, “How Do Parents Experience The IEP Process?” Ph.D. dissertation, Rutgers University, May
2019, https://rucore.libraries.rutgers.edu/rutgers-lib/60885/PDF/1/play.
67
U.S. Government Accountability Office, “IDEA Dispute Resolution Activity in Selected States Varied Based on
School Districts' Characteristics,” GAO-20-22, November 2019, https://www.gao.gov/assets/710/702514.pdf.
68
Board of Education of the Hendrick Hudson Central School District v. Rowley, 458 U.S. 176 (1982).

24
progress appropriate in light of the child’s circumstances.”69 Some parents hoped that the new

standard would help them hold school districts accountable. Early returns suggest otherwise.

School districts prevailed in79 percent of IEP disputes decided in the three years after the

decision.70

In 2014, the US Department of Education launched a framework called “Results-Driven

Accountability. In its annual determination of which states meet the requirements of IDEA, the

department would now take account of test scores and other performance indicators for students

with special needs. There is little evidence that the system has worked. During the first five years

of the system, the performance indicators barely showed any improvement.71 During the 2018-

2019 school year, just 21 states satisfied the overall “meets requirements” threshold.72

Analyzing the reasons for this failure would be a fruitful topic for future study.

Research on the long-term outcomes of special education is scarce and discouraging.

Kanaya, Wai, and Miranda examined how students who qualified for IDEA at any point --

compared to similar students who did not-- fared on long-term outcomes. They looked at

educational attainment, economic self-sufficiency, social engagement, and health. The two

groups did not differ significantly. That is, special education services did not have a strong

relationship to outcomes in adulthood. This finding is sobering, especially since adults with

autism and other disabilities have little recourse against school districts that failed them.73

69
Endrew F. v. Douglas County School District, 580 U.S. ____ (2017).
70
William Moran, “The IDEA Demands More: A Review of FAPE Litigation after Endrew F.,” New York
University Journal of Legislation and Public Policy 22 (2020): 495-562, https://nyujlpp.org/wp-
content/uploads/2020/05/Moran-The-Idea-Demands-More-22-nyujlpp-495.pdf.
71
The Advocacy Institute, “Results Driven Accountability: Needs Substantial Intervention,” November 2018,
https://www.advocacyinstitute.org/resources/AdvocacyInstitute. RDA.Report.Nov2018.pdf
https://www2.ed.gov/fund/data/report/idea/ideafactsheet-determinations-2020.pdf.
72
U.S. Department of Education, 2020 Determination Letters on State Implementation of IDEA,” June 25, 2020,
https://www2.ed.gov/fund/data/report/idea/ideafactsheet-determinations-2020.pdf.
73
Tomoe Kanaya, Jonathan Wai, and Brenda Miranda, “Exploring the Links Between Receiving Special Education
Services and Adulthood Outcomes,” Frontiers in Education, June 14, 2019,
https://www.frontiersin.org/articles/10.3389/feduc.2019.00056/full.

25
 Elementary and second education is just one element of policy for children. Another

consists of various other interventions outside the school setting. As mentioned earlier, all 50

states now require insurance coverage for applied behavior analysis (ABA), which usually takes

place inside the home. State mandates vary widely in their generosity, and under federal law,

even the most liberal mandates cannot apply to self-insured plans.74 And whatever the coverage

may be, autistic children might still not have access to ABA. A recent study gauged the

availability of ABA with 2018 data from the Behavior Analyst Certification Board. It compared

the per capita supply of certified providers in each state with a benchmark established using the

board's guidelines. In 49 states, per capita supply fell below the benchmark.75 Even when

families get insurance coverage and ABA access, ensuring quality is difficult. Parents can

readily track the output: the number of hours of therapy. Accountability for outcomes is a

different story. If a child makes little progress, it is hard to determine whether the symptoms are

intractable, or the therapists are incompetent. And in the absence of systematic statewide data

about ABA outcomes, policymakers are hard put to measure the impact of insurance mandates

on the lives of autistic children,

As mentioned earlier, people with disabilities stop qualifying for IDEA services on their

22d birthday. The disability community refers to this point as “the cliff.” IEPs for older students

are supposed to include transition plans to help them adjust to life after the cliff. There are few

signs of success. Schools are not accountable for anything that happens to a student after the

cliff, and even good-faith efforts suffer from a lack of coordination and inter-organizational

74
Timothy Callaghan and Steven Sylvester, “Autism Spectrum Disorder, Politics, and The Generosity of Insurance
Mandates in The United States,” PLOS One, May 14, 2019,
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0217064#sec015.
75
Yidan Xue Zhang et al., Supply of Certified Applied Behavior Analysts in the United States: Implications for
Service Delivery for Children With Autism, Psychiatric Services 71 (December 2019),
https://ps.psychiatryonline.org/doi/10.11,”76/appi.ps.201900058.

26
structure.76 In 2012, the U.S. Government Accountability Office identified 45 programs that

support employment for people with disabilities.77 At first blush, this figure may make it seem as

if there is a wide range of options, but most of the programs have a narrow scope or work with

other clienteles. (Nineteen target military veterans, a group that includes few people on the

spectrum.) This fragmented system serves mostly to create confusion, like an intricate roadmap

where nearly every route comes to a dead end. People with autism and their families often do

not know where to turn.78

. By one estimate, three-fourths of adults with intellectual and developmental disabilities

(including, but not limited to, autism) live with a parent or other caregiver and are not connected

to publicly available services and supports.79 Statistics concerning autistic adults are fuzzy

because many are not “in the system” as students are, and so officials are not keeping track of

them. Accordingly, studies that mention autistic adults typically contain phrases such as “little is

known.”

• “[Very] little is known about the career stages and experiences of young adults with

ASD, including their career aspirations, career exploration activities, the school-to-work

transition, the job-search-and-choice process, actual work experiences, and the associated

transition needs for support and services throughout these stages.”80

76
Carrie Snell-Rood et al., “Stakeholder Perspectives On Transition Planning, Implementation, and Outcomes for
Students with Autism Spectrum Disorder,” Autism, January 20, 2020,
https://journals.sagepub.com/doi/abs/10.1177/1362361319894827?journalCode=auta.
77
U.S. Government Accountability Office “Employment for People with Disabilities: Little Is Known about the
Effectiveness of Fragmented and Overlapping Programs,” GAO-12-677, June 2012. Online:
http://www.gao.gov/assets/600/592074.pdf.
78
US Government Accountability Office, “Youth With Autism: Federal Agencies Should Take Additional Action to
Support Transition-Age Youth,” GAO-17-352, May 4, 2017, https://www.gao.gov/products/GAO-17-352.
79
Carli Friedman, “There’s No Place Like Home: A National Study of How People with Intellectual and/or
Developmental Disabilities and Their Families Choose Where to Live,” The Arc of the United States, January 24,
2020, https://futureplanning.thearc.org/assets/CFP_Housing_Survey_Technical_Report-
80e6eb718c816d07a15a9972df06a6e73b1393d5b56ae145acc058fce243cd93.pdf.
80
Amy-Jane Griffths et al., “Autism in the Workplace: Assessing the Transition Needs of Young Adults with
Autism

27
 • “There are not many intervention studies that address health outcomes among autistic

adults.”81

• “Autistic people are at high risk of mental health problems, self-injury and suicidality.

However, no studies have explored autistic peoples’ experiences of treatment and support

for these difficulties.”82

• “Very little is known about the support needs of older autistic adults in general, or their

specific needs within residential care services.”83

Before leaving this fog bank of uncertainty, we should mention one issue that has gained

urgency in recent months: relations between police and autistic teens and adults. Autistic people

may have poor eye contact or engage in repetitive behaviors, which may strike police officers as

suspicious. They also might be slow to react to police commands, which can cause a routine stop

to spin out of control. In 2017, for instance, body-camera footage showed a Buckeye, Arizona

police officer detaining a 14-year-old autistic boy who was calming himself by flapping a piece

of string. Although the boy explained that he was “stimming” (engaging in self-stimulatory

behavior), the officer assumed he was on drugs and slammed him to the ground.84 To prevent

such incidents, a number of localities have started to train police officers on how to respond to

people with autism.

Spectrum Disorder,” Journal of Business and Management 22 (2016),

https://digitalcommons.chapman.edu/cgi/viewcontent.cgi?article=1228&context=education_articles.
81
Teal W Benevides et al., “Interventions To Address Health Outcomes Among Autistic Adults: A Systematic
Review” Autism (2020), https://journals.sagepub.com/doi/pdf/10.1177/1362361320913664.
82
Louise Camm-Crosbie, “‘People like me don’t get support’: Autistic Adults’ Experiences of Support and
Treatment for Mental Health Difficulties, Self-Injury aad Suicidality,” Autism, November 29, 2018,
https://journals.sagepub.com/doi/full/10.1177/1362361318816053
83
Catherine J. Crompton, Cos Michael, Michael Dawson, and Sue Fletcher-Watson, “Residential Care for Older
Autistic Adults: Insights from Three Multiexpert Summits,” Autism in Adulthood, June 10, 2020,
https://www.liebertpub.com/doi/full/10.1089/aut.2019.0080.
84
Alexis Egeland, “Police Video Shows Buckeye Officer Detain Autistic Teen He Thought Was Using Drugs,”
Arizona Republic, September 18, 2017, https://www.azcentral.com/story/news/local/southwest-
valley/2017/09/18/police-video-shows-buckeye-officer-detain-autistic-teen-he-thought-using-drugs/679282001.

28
 Some autistic adults obtain driver licenses. Encounters with the police can be unusually

stressful for them, leading to misunderstandings. In West Des Moines, Iowa, a police officer

stopped an autistic driver for a broken taillight. When the driver appeared confused, the officer

thought he was high, and briefly handcuffed him before letting him go.85 The driver then

became a vocal advocate for identification laws. Of course, as with all aspects of autism, there is

disagreement. As one Virginia driver put it: “Great, so if I get into an accident, who's the cop

going to believe, the guy with the autistic label or the guy without it?”86

Common Ground?

It is vain to hope for a magic bullet that will settle the bitter fights over autism. Though

there will be no resolution to profound philosophical disputes, it is possible to bring clarity to

some aspects of the issue. Paul T. Shattuck and Anne M. Roux sum up a basic problem with

autism public policy:

Imagine if a large corporation tried to operate without financial statements—without a

clear picture of sales, expenditures, customer satisfaction, or assets. The company would

quickly go under. Yet, this state of affairs is commonplace in many autism services. At a

population level, we are almost completely unable to clearly describe the resources

expended on services or measurable indicators of the population outcomes we hope to

influence—including the employment rate.87

85
Kathie Obradovich, “Autism Advocate’s Brush with Police Leads to Proposed Driver’s License Designation,”
Iowa Capital Dispatch, June 11, 2020, https://iowacapitaldispatch.com/2020/06/11/autism-advocates-brush-with-
police-leads-to-proposed-drivers-license-designation/.
86
Ashburn Psychological and Psychiatric Services, “Recent Special `Autism’ Code on Virginia Driver's Licenses
and ID Cards Goes into Law: Helpful or Discriminatory for Individuals on the Autistic Spectrum?” July 11, 2014,
https://www.prweb.com/releases/2014/07/prweb12004939.htm.
87
Paul T. Shattuck and Anne M. Roux, “Commentary on Employment Supports Research,” Autism 19 (2014),
http://aut.sagepub.com/content/19/2/246.full.

29
They recommend a “big data” measurement revolution for ASD services, including employment

supports. One can see parents and neurodiversity advocates finding common ground over such

approaches,

Similarly, there is a need for more research into quality of life.. Like everything else in

autism politics, this term is more inflammable than it looks to a casual observer. In the context

of allocation of scarce medical resources, disability advocates worry that it could provide an

excuse to deny lifesaving care to people with disabilities. One could picture a crude definition in

which disability means a lower quality of life by definition. For our purposes, however, it means

enabling autistic people to be happy and healthy. Researchers at Children's Hospital of

Philadelphia (CHOP) developed a set of simple questionnaires to help clinicians and families

evaluate the quality of life of autistic children, adolescents, and adults., The questions involve

such things as subjective well-being (meaning and purpose, positive affect, general life

satisfaction) and social health (companionship, social isolation, satisfaction with social roles,

social support).88 Such measures might also guide autism policy, or at least shed light on

specific measures for which stakeholders can hold policymakers accountable.

A small sign of hope appeared in the 2019 reauthorization of the Autism CARES Act,

whose enumeration of research priorities included adults and “services across the lifespan.”

Previously, only about two percent of autism research funding went to studies of adults. “It’s

pretty notable that’s getting called out as a priority for the first time,” Shattuck said. “I hope to

see this translate to a shake-up in funding priorities.”89

88
Laura Graham Holme et al, “A Lifespan Approach to Patient-Reported Outcomes and Quality of Life for People
on the Autism Spectrum,” Autism Research (2020), https://onlinelibrary.wiley.com/doi/abs/10.1002/aur.2275.
89
Nicole Westman, “U.S. Funnels Funds Into Research Related to Autistic Adults,” Spectrum, October 10, 2019,
https://www.spectrumnews.org/news/u-s-funnels-funds-into-research-related-to-autistic-adults/

30
 Autistic writer John Elder Robison calls for a change in the terms of debate.

Neurodiversity advocates and parents who believe in the disease frame will never see eye to eye

about “cure” or “recovery.” It is better, he says, to talk about specific components of autistic

disability. “We should all be able to agree that the ability to talk is a good human trait. So is the

ability to eat whatever you want, without getting sick. Therefore, we should be able to agree that

therapies that allow autistic people who couldn't do those things in the past to do them in the

future are good.”90 Robison also adds an appropriate parting thought:

The other thing we all need is some tolerance for differing views. For example, I may see

some benefits and some disabilities to my own high functioning autism. There are other

people who see zero benefit and much handicap to autism in themselves. Both of us

deserve the right to hold our differing opinions and live our lives in peace. There is no

reason that can't happen, though you'd never know it from reading many of today's blogs

and articles on the topic.

###

90
John Elder Robison, “The "Cure" for Autism and the Fight Over It,” Psychology Today, October 12, 2019,
https://www.psychologytoday.com/us/blog/my-life-aspergers/200910/the-cure-autism-and-the-fight-over-it.

31