Autism is hard to define. It’s a magic 8-ball: The definition changes depending on the question.
Uncertainty isn’t just a challenge for parents and the medical community—it poses obstacles for policymakers, too.
-Book Excerpt-
Autism is political. It involves all kinds of government policy – from provision of education and social services,to regulation of insurance companies and medical professionals, to public funding of scientific research into its causes and treatment. The connections between government and autism reach farther than most people know. For example, many police officers and other first responders get training in how to deal with autistic people, who might react in unexpected ways during emergencies and crime investigations. Many organizations lobby policymakers and try to influence what government does about issues involving autism. Thomas Insel, director of the National Institute of Mental Health (NIMH), told journalist Andrew Solomon: “We get more calls from the White House about autism than about everything else combined.”1
Autism is “political” in a broader sense. Political conflict involves ideas and arguments for which the information is often murky, incomplete, interpretive, and open to manipulation.2
Just about everything concerning autism is subject to dispute. What is it? What causes it? How many different kinds of it are there? Who has it? What can we do about it? Is it even the right problem to be thinking about? All of these questions, and many others, are the stuff of bitter political battles. The stakes are high: according to one estimate, the national cost of supporting people with autism adds up to $236 billion per year.3 Of course, such numbers themselves entail controversy. An alternative perspective is that they do not represent the cost of autism, but rather the cost of discrimination against people who have it, and the failure to help them lead independent lives.4And yet with only a few exceptions, political science has barely begun to analyze autism policy and politics. This inattention is unfortunate because the discipline can tell us much about how the issue has emerged and what government is doing about it. Conversely, the study of autism politics can contribute to a more sophisticated understanding of policymaking.
Autism is more than an abstract topic for academic discussion. It shapes the lives of the people who have it, as well as their families. Well-meaning observers sometimes refer to autism as a “tragedy,” a term that connotes destiny, something irretrievably beyond anybody’s control. But many people with autism can do much more than make wallets in sheltered workshops. Under the right circumstances, they can pursue careers, contribute to society, and lead happy lives. Those circumstances, however, are often absent. Many autistic people do not get the kind of education that can help them build their capabilities and improve their ability to interact with others. As a result, many of them have a hard time finding good jobs, maintaining loving relationships, and achieving happiness.
Before looking at the broad scope of the relevant policy issues, we should glance at the ground-level realities of life with autism.
The Magic 8-Ball: The Unanswered Questions of Autism
A
utism refers to a group of complex disorders of brain development. It entails difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. The difficulties come in various degrees. For instance, impairment of communication can range from a total inability to speak to rapid-fire talk with odd rhythms. That is why we also use the term autism spectrum disorder, or ASD. Unless otherwise indicated, this book will use the terms autism and ASD interchangeably.
Autism often involves a range of other co-occurring conditions: intellectual disabilities (e.g., low IQ); delays in gross motor skills (e.g., walking, throwing) and fine motor skills (e.g., writing); attention problems and hyperactivity; anxiety; self-injurious behavior; unusual sensitivity to certain sounds, smells, or feelings; extreme food selectivity; and sleep disorders.5
For autistic people and their families, the co-occurring conditions may cause as much anguish as the autism itself.Even the idea of a “spectrum” does not fully capture the variety of autism. People in this world have a saying, “If you’ve met one autistic person, you’ve met one autistic person.” Consider two people with high-functioning autism (not an officially-recognized diagnosis, but a term in common usage). Both may have the same IQ scores and both may be able to speak coherently, but the similarities may well end there. One may be even-keeled and affectionate while the other shows little warmth but a lot of rage. One may hate reading while can spend hours engrossed in a book. One may love to gorge on fruit while the other rejects it entirely, to the point of retching after a sip of apple juice. In light of the daunting array of behaviors and abilities involved in autism – not to mention the possibility of variations in the underlying biology – some scientists believe that it is more accurate to speak of “the autisms.” Neurologist Daniel Geschwind says that if you show him 100 different people with autism, he could “show you exactly 100 different types of autism.”6
As with so much else in the world of autism, its first signs arrive in a cloud. The condition involves an impairment of social communication, and because we all start life with limited social communication skills, there is still no sure way to distinguish infants who will eventually get an autism diagnosis from those who will not.7
Many babies who end up on the spectrum will laugh, gurgle, crawl, and walk just like other children. Their parents put checkmarks next to their list of “developmental milestones” with no inkling that these children were different from their peers. For parents of a toddler, the indications may start with things that do not happen: talking, pointing, making eye contact, or engaging in pretend play. Other signs consist of behavior such as flapping hands and lining up objects. One at a time, these things do not prove autism. Developmental delays are common, and most children sometimes flap their limbs and line up their toys. But the signs indicate autism if a number of them are present and persistent, that is, if they form a pattern. It takes time to spot a pattern.Parents do not want to think about autism, so even when warnings seem to mount, it is tempting to ignore or rationalize them. But sooner or later, anxiety will drive them to seek answers from the Internet. Hoping to find reassurance, they may Google a phrase such as “lining up objects.” If so, the results will rattle them even more, since most of the hits will have something to do with autism.
Pediatricians may not be helpful at this point. A pediatrician typically sees children for only a few minutes, during which time autistic behaviors might not show up.8
It is possible to flag a potential case of autism with some screening questions, but less than half of pediatricians routinely do so.9 In one small-sample study, 12 of 13 parents of autistic children reported negative experiences when they approached their child’s pediatrician with their concerns.10 Nancy D. Wiseman recalls that she repeatedly voiced her suspicions, “but I received the same responses: `Don’t worry – she’ll outgrow it.’ `Let’s wait and see.’”11 If they see something out of the ordinary, pediatricians will refer a child to a developmental pediatrician or psychologist. Often, the referral comes much later, at school. Although the signs of autism usually appear by the age of 24 months, the median age of diagnosis is 53 months.12Diagnosis is painful for parents, even when it comes after months of simmering suspicions and inconsistent comments from doctors. David Mitchell writes:
Faintheartedness is doomed by the first niggling doubt that there’s Something Not Quite Right about your sixteen month- old. On Diagnosis Day, a child psychologist hands down the verdict with a worn-smooth truism about your son confirmed. Then you run the gauntlet of other people’s reactions: “It’s just so sad;” “What, so he’s going to be like Dustin Hoffman in Rain Man?”; “I hope you’re not going to take this so-called ‘diagnosis’ lying down!”13
An official diagnosis swaps one set of question marks for another. As parents talk to clinicians and other experts, their frustration boils over. They find ambiguity where they expected guidance, may eventually feel as if they are playing with a magic 8-ball that lacks any affirmative responses.
Why did this happen?
Nobody knows for sure.
Is there some kind of medicine?
There are drugs for some co-occurring conditions, but none for autism itself.
What can we do?
There are various therapies that take a long time and cost a lot of money.
Do they work?
Often they lead to progress. Occasionally they make a big difference. Sometimes they do not help much at all. It is impossible to say in advance.
The only sure thing is hardship. “With rare exceptions,” wrote journalist Jane Gross in 2004, “no disability claims more parental time and energy than autism because teaching an autistic child even simple tasks is labor intensive, and managing challenging behavior requires vigilance.”14
Catherine Maurice recalls how she got her daughter to stop self-injurious behavior: “Every time she hit her own cheeks, we calmly took her hands, guided them to her lap, and held them there for two or three seconds, saying nothing. Then, after a couple of seconds, we would praise her, in the succinct specific language of behavioral reinforcement: `Good hands down.’”15Tom Fields-Meyer writes that when his son was little, he was terrified of seemingly innocuous things such as a fishing toy, but lacked the fears that he should have had: “He balances precariously on high playground structures; he wanders off to explore the outer limits of the supermarket on his own, not noting or caring that he has lost contact with his mother or father; left unattended for even a second, he wanders into crowds and busy streets.”16
Getting help can be just as tough. “Once you have that diagnosis in hand, the questions start piling up,” writes autism parent Mari-Jane Williams. “What services does he need, and what will insurance cover? What really works, and what is just a hopeful shot in the dark? How can she get the most out of the public school system? Who coordinates all of this? Do you need a small army of specialists or just one really good behavioral or occupational therapist? 17
Very quickly, parents will learn that there is no one-stop shopping in the autism world. Various providers offer various services, with various levels of support from the government, which largely depends on where one lives. Wherever they turn, parents run into red tape. "trying to obtain services for a special-needs child is never-ending process," one mother told a Tennessee journalist. "Taking care of the children is much simpler than taking care of the paperwork.”18For children under three, the first stop is an Individualized Family Service Plan (IFSP), which maps out Early Intervention (EI). After age three, children get an Individualized Education Program (IEP) from their local education agency (LEA), that is, their school system. The IEP explains how children will receive a free appropriate public education (FAPE) in the least restrictive environment (LRE). The program may include speech therapy (ST), occupational therapy (OT), physical therapy (PT), adapted physical education (APE), and applied behavior analysis (ABA) interventions including discrete trial training (DTT). Depending on which state they live in, official agencies or insurance companies may also subsidize services from NPAs (nonpublic agencies).19
As attorney Gary S. Mayerson observes drily: “Given the confusion that all these unhelpful acronyms are causing for parents and professionals, it is not without irony that autism is associated with communication dysfunction.”20Once they start receiving services, parents have to become case managers, coordinating the work of multiple providers. Some services take place in the home, but others (especially speech and occupational therapy) require a trip to an office far away. “Appointments. Lots of appointments,” says one autism parent who drives two hours from a home in Rolla to a care center in Columbia, Missouri.21
When they are not shuttling their children or filling out forms, parents are searching the Internet for various do-it-yourself approaches, including “complementary” or “alternative” medicine. The treatments range from the benign (cod liver oil) to the risky (hyperbaric oxygen chambers). Though largely unregulated by the government and unsupported by scientific evidence, the world of alternative treatments never fails to keep parents busy. A new fad is always around the corner.
Some research suggests that a small percentage of children do lose the diagnosis over time.22
But contrary to some media reports, the process is neither natural nor automatic. “These people did not just grow out of their autism,” said Deborah Fein, lead author of a study of autistic people who had great progress. “I have been treating children for 40 years and never seen improvements like this unless therapists and parents put in years of work.”23 Families often run up huge out-of-pocket expenses, at risk to their financial futures.24 The time that goes into the care of an autistic person means less time for earning money, and example. One common belief is one study put the resulting average loss of annual income at $6,200, or 14 percent of reported income.25 Raising an autistic child with special service needs is even more stressful than raising a child with another developmental disability.26 “It’s very difficult to hear your own son say, `I don’t want to have autism, I just wish I was dead,’” says one autism parent.27Many analyses of autism speak as if it were only a childhood ailment and assume that parents are the main stakeholders. But most children with autism grow up to be adults with autism, and they suffer uniquely high levels of social isolation. Almost 40 percent of youth with an autism spectrum disorder never get together with friends, and 50 percent of never receive phone calls from friends. These figures are higher than for peers with intellectual disability, emotional disturbance, or learning disability.28
When school ends, many adults with autism have grim prospects. Though evidence is sparse, it seems that most do not find full-time jobs.29 Compared with other people their age, they have higher rates of depression, anxiety, bipolar disorder, and suicide attempts.30So instead of looking at the issue only from the viewpoint of parents, change perspectives and try to put yourself in the position of an autistic person. Of course, there are many different kinds of autistic experience. “Autism is often a hidden disability,” writes one person with Asperger’s. “There is no universally visible signifier — no mobility aid that we all use, no assistive technology or service animal or language common to all or even most autistic people. While many of us use assistive technology, many others go through our days — our lives — passing for nondisabled.”31
But “passing” is not the same thing as avoiding pain. “You look at me and I look articulate, but I suffer, in some way, every single day,” says autistic author John Elder Robison. “You know, you look at somebody like me and you think, he looks, you know, so successful and so functional [but] anxiety affects forty per cent of us, depression affects forty per cent of us, several per cent of us kill ourselves. Those are absolutely very real risks every single day for me.”32Others cannot “pass” because of their impairments. Ido Kedar, who is unable to speak but now communicates via an iPad, recalls his immense frustration with the behavioral therapists who doubted his intelligence when he was a child.
It isn’t a lack of intelligence to be able to think but to not be able to get your body to show it. It is being trapped. If I put your hands into baseball mitts and your tongue was trapped in gooey sludge and couldn’t move right and I bombarded you with questions, I think you would agree you would have a hard time showing that you had an intact mind, especially if those baseball mitt hands moved differently to your thoughts and wishes sometimes, and everyone assumed that people with sludge tongues and baseball mitt hands were intellectually low.33
Many autistic people engage in self-stimulatory behavior, or “stimming.” Sometimes the stimming involves jumping up and down. In the aptly-titled The Reason I Jump, autistic adolescent Naoki Higashida explains “when something happens that affects me emotionally, my body seizes up as if struck by lightning. `Seizing up’ doesn’t mean that my muscles literally get stiff and immobile – rather it means that I’m not free to move that way I want. So by jumping up and down, it’s as if I’m shaking loose the ropes that are tying up my body.”34
Just as parents have their own magic eight-ball of autism non-answers, people on the spectrum face different questions at different ages. Autistic children may ask: Why do other kids laugh at me? Adolescents wonder: Why do my parents see me as such a burden? With age, the questions get darker. Why do I have trouble holding a job? Will I be alone for the rest of my life? Why do some people think that people like me shouldn’t even be born?
Yet it is a mistake to portray the world of autism only as a harsh realm of unrelieved pain. With supports and accommodations, many autistic people can make their way in the world. After recounting his son’s often-troubled development, Tom Fields-Meyer concludes with his uplifting bar mitzvah speech: “In all my favorite parts of the Torah, God makes miracles. And today feels like a miracle too. I am finally thirteen years old. So let me tell you about me. I am an autistic person. That means my brain works differently than other people’s brains. Sometimes I repeat things when I don’t mean to. Sometimes it’s hard to focus in school. Sometimes autism is very helpful. One good thing is that I have a very good memory.”35
Some autistic people do indeed have great memories. Some do not. Some can deliver eloquent remarks about their relationship to God. Some cannot communicate at all, even with assistive devices. Nobody is sure why this is so, and on diagnosis day, parents can never be sure where their children will end up. Just as uncertainty is a part of autistic life, it is a defining characteristic of autism politics.
John J. Pitney Jr. is Roy P. Crocker Professor of Politics at CMC, a political blogger (Christian Science Monitor) and commentator, and the author and co-author of many books, including Private Anti-Piracy Navies (with John-Clark Levin ’12), After Hope and Change (with James Ceasar and Andrew Busch), and The Art of Political Warfare.
NOTES
1 Andrew Solomon, Far from the Tree: Parents, Children, and the Search for Identity (New York: Scribner, 2012), 222.
2 Deborah Stone, Policy Paradox: The Art of Political Decision Making, 3d ed. (New York: W.W. Norton, 2013), 34-36.
3 Ariane V. S. Buescher, Zuleyha Cidav, Martin Knapp, and David S. Mandell, “Costs of Autism Spectrum Disorders in the United Kingdom and the United States,” JAMA Pediatrics, published online June 9, 2014. Online: http://autismsciencefoundation.org/ sites/default/files/Costs%20of%20Autism%20JAMA%20June%202014.pdf. The figure is the sum of the estimates for children ($61 billion) and adults ($175 billion) with autism in the United States under the assumption that 40 percent have intellectual disabilities. If that percentage is higher, so is the aggregate cost.
4 Comments of Ari Ne’eman, Interagency Autism Coordinating Committee, meeting transcript, July 16, 2010. Online: http://iacc.hhs.gov/events/2010/transcript_071610.pdf
5 Susan E. Levy, David S. Mandell, Robert T. Schultz, “Autism,” The Lancet 374 (November 2009): 1627 – 1638. 6 Greg Boustead, “IMFAR 2013: Autism or `Autisms’?” Simons Foundation Autism Research Initiative, May 6, 2013. Online: http://sfari.org/sfari-community/communityblog/ 2013/imfar-2013-autism-or-autisms.
7 Research is under way to develop such screening tools. Lauren M. Turner Brown, et al., “The First Year Inventory: A Longitudinal Follow-Up of 12-Month-Old to 3-Year- Old Children,” Autism 17 (September 2013) 527-540. Online http://aut.sagepub.com/ content/17/5/527.
8 Terisa P. Gabrielsen, et al., “Identifying Autism in a Brief Observation,” Pediatrics 135 (February 2015): e330-e338. Online: http://pediatrics.aappublications.org/content/ early/2015/01/07/peds.2014-1428.full.pdf+html.
9 In 2009, 48 percent did so, which was actually more than double the level of 2002. Linda Radecki, et al, “Trends in the Use of Standardized Tools for Developmental Screening in Early Childhood: 2002–2009,” Pediatrics 128 (Number 1, July 1, 2011): 14-19.
10 Amy Sudhinaraset and Alice Kuo, “Letter: Parents’ Perspectives on the Role of Pediatriciansin Autism Diagnosis,” Journal of Autism and Developmental Disorders 43 (March 2013): 747–748. Online: http://link.springer.com/content/ pdf/10.1007%2Fs10803-012-1591-z.pdf.
11 Nancy D. Wiseman, The First Year: Autism Spectrum Disorders: An Essential Guide for the Newly Diagnosed Child (Cambridge, Massachusetts; Da Capo Lifelong Books, 2009), xx.
12 Jon Baio, “Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2010,” Morbidity and Mortality Weekly Report Surveillance Summaries, 63 (March 28, 2014): 1-21. Online: http://www.cdc.gov/mmwr/preview/mmwrhtml/ss6302a1.htm.
13 David Mitchell, introduction to The Reason I Jump, by Naoki Higashida, trans. K.A.Yoshida and David Mitchell (New York: Random House, 2013), x.
14 Jane Gross, “For Siblings of the Autistic, a Burdened Youth,” New York Times, December 10, 2004. Online: http://www.nytimes.com/2004/12/10/health/10siblings.html.
15 Catherine Maurice, Let Me Hear Your Voice (New York: Ballantine Books, 1994), 145.
16 Tom Fields-Meyer, Following Ezra (New York: New American Library, 2011),46-47.
17 Mari-Jane Williams, “Advice for Parents of Children Just Diagnosed with Autism, From Those Who’ve Been There,” Washington Post, July 30, 2014. Online: http://www.washingtonpost.com/news/parenting/wp/2014/07/30/advice-for-parents-of-childrenjust-diagnosed-with-autism-from-those-whove-been-there.
18 Nancy De Gennaro, “Autism 24/7: Parents Find Paperwork a Puzzle,” Daily News Journal [Murfreesboro, Tennessee], March 14, 2013. Online: http://www.dnj.com/ interactive/article/20130317/LIFESTYLE/303170032/Autism-24-7-Parents-findpaperwork- puzzle.
19 For one glossary of related terms, see San Mateo County Office of Education, “Glossary of Special Education Terminology.” Online: http://www.smcoe.org/learning-andleadership/special-education-local-plan-area/glossary-of-special-education-terminology.html
20 Gary S. Mayerson, “Autism in the Courtroom,” in Handbook of Autism and Developmental Disorders, 4th ed., ed. Fred R. Volkmar et al. (Hoboken: John Wiley & Sons, 2014), 1036-1050, at 1040.
21 Taylor Lower, “As Autism Diagnoses Increase, Therapy and Treatment Services Strive to Keep Up,” The Missourian, October 28, 2014. Online: http://www.columbiamissourian. com/a/179346/as-autism-diagnoses-increase-therapy-and-treatment-servicesstrive- to-keep-up.
22 Deborah Fein, et al., “Optimal Outcome in Individuals with a History of Autism,” Journal of Child Psychology and Psychiatry 54 (February 2013): 195-205. Online: http:// onlinelibrary.wiley.com/doi/10.1111/jcpp.12037/pdf.
23 Benedict Carey, “Some With Autism Diagnosis Can Overcome Symptoms, Study Finds,” New York Times, January 16, 2013. Online: http://www.nytimes.com/2013/01/17/ health/some-with-autism-diagnosis-can-recover-study-finds.html
24 Deanna L. Sharpe and Dana Lee Baker, “Financial Issues Associated with Having a Child with Autism,” Journal of Family and Economic Issues 28 (June 2007): 247-264.
25 Guillermo Montes and Jill S. Halterman, “Association of Childhood Autism Spectrum Disorders and Loss of Family Income,” Pediatrics 121 (April 2008): 821-826.
26 Laura Schieve, et al, The Relationship Between Autism and Parenting Stress,” Pediatrics 119, Supplement 1 (February 1, 2007): S114 -S121.Online: http://pediatrics. aappublications.org/content/119/Supplement_1/S114.full.
27 Liz Collin, “Family Struggles With Complex System of Autism Care,” WCCO-TV, November 5, 2014. Online: http://minnesota.cbslocal.com/2014/11/05/family-struggleswith- complex-system-of-autism-care.
28 Gael I. Orsmond, et al, “Social Participation among Young Adults with an Autism Spectrum Disorder,” Journal of Autism and Developmental Disorders (April 2013). Online: http://link.springer.com/content/pdf/10.1007%2Fs10803-013-1833-8.pdf
29 Julie Lounds Taylor and Marsha Mailick Seltzer, “Employment and Post-Secondary Educational Activities for Young Adults with Autism Spectrum Disorders During the Transition to Adulthood,” Journal of Autism and Developmental Disorders 51 (May 2011): 566-574. Online: http://www.waisman.wisc.edu/family/pubs/Autism/2010_Post_high_ school_activities.pdf
30 Lisa Croen, et al., “Psychiatric and Medical Conditions among Adults with ASD,” paper presented at the International Meeting for Autism Research, May 15, 2014. Online: https://imfar.confex.com/imfar/2014/webprogram/Paper17783.html.
31 “The Myth of Passing,” Musings of an Aspie: One Woman’s Thoughts About Life on the Spectrum, October 24, 2013. Online: http://musingsofanaspie.com/2013/10/24/themyth- of-passing/.
32 John Elder Robison, “John Robison at IMFAR: On Autism Rights, Ethics, & Priorities,” The Thinking Person’s Guide to Autism, May 23, 2014. Online: http://www.thinkingautismguide. com/2014/05/john-robison-at-imfar-on-autism-rights.html 33 Ido Kadar, “Out of the Closet,” Ido in Austismland, June 23, 2014. Online: http:// idoinautismland.com/?p=242. 34 Higashida, The Reason I Jump, 47-48. 35 Fields-Meyer, Following Ezra, 232.
33 Ido Kadar, “Out of the Closet,” Ido in Austismland, June 23, 2014. Online: http:// idoinautismland.com/?p=242.
34 Higashida, The Reason I Jump,, 47-48.
35 Fields-Meyer, Following Ezra 232.
‘AUTISTIC PEOPLE, ABOVE ALL, ARE PEOPLE’
Q & A WITH JACK PITNEY
Andrew Willis: What do you hope your book will bring to the debate over autism?
Jack Pitney: I hope that the book drives home that there are two defining features of autism policy: uncertainty and conflict. Nearly everything about autism involves deep uncertainty. For instance, we really do not know whether there has been a true increase in autism prevalence over the years, or whether the apparent increase is merely a matter of greater awareness and changing definitions. That’s because we do not have a clear baseline. We don’t really know the extent of autism thirty or forty years ago because there were no systematic national studies. The closest thing to settled knowledge in autism is that vaccines do not cause it. And yet a vocal group of advocates insists that vaccine manufacturers are responsible for an “epidemic” of autism. There are also deep and emotional splits between those seeking a cure and those advocating acceptance of autism. The arguments are deep, bitter, and personal. In short, autism politics is like faculty politics on crystal meth.
AW: Do you think we'll ever resolve the conflicts over definitions of autism?
JP: Science can cast a great deal of light on the origins and treatment of autism. But one basic question is more philosophical than scientific. Is autism a disorder in need of treatment or a neurological difference in need of accommodation? That debate will persist.
AW: If you could cut through the constraints of the political system, are there any undiluted reforms to autism policy that you would enact?
JP: We need more research in general. In addition to research on the biological origins of autism – a very important subject – we also need much more research on effective interventions, that is, the kind of work that Marjorie Charlop does at the Claremont Autism Center.
AW: Did anything surprise you in your investigation of the history of autism policy?
JP: It was surprising – and humbling – to learn how little we know. Here is an example. One common belief is one study put the resulting average that, in the past, autistic people usually ended up in some kind of big institution, either for the mentally ill or intellectually disabled. Surely, some met this fate, but I did a backof- the-envelope calculation that raised doubts. I made a very conservative assumption that the prevalence of autism has always been one in 150 Americans. Then I used this assumption to estimate the number of autistic people in each census year between 1940 and 1970. In each year, the estimated number of autistic people exceeded the total number of people in these institutions – and surely most of the latter were dealing with something other than autism. So if the assumption is right, then most people with autism were not in institutions. So what happened to them? Nobody knows.
AW: Do you have any advice for people outside of the autism community on how to engage with these issues?
JP: Be cautious and skeptical about media coverage. For decades, news stories have regularly proclaimed a new “breakthrough” in the treatment of autism. Most of these “breakthroughs” dissolved under closer scientific scrutiny. Also beware of stereotypes. People who derive their knowledge of autism from watching “Rain Man” tend to think that autistic people have superpowers of math and memory. Actually, such savant abilities are quite rare. Another stereotype is that autistic people are incapable of empathy or emotional warmth. That’s just wrong. Autistic people may sometimes have difficulty reading other people’s states of mind, but they are just as caring as anybody else. Autistic people, above all, are people.
Andrew Willis ’14 majored in government, graduating with honors. He currently serves as a VISTA AmeriCorps volunteer for a rural health network in southwestern Colorado.
AUTISM TREATMENT AND CMC
For some 24 years, the Claremont Autism Center has been providing a behavior modification treatment and research program for autistic children and their families. Led by Center Director Marjorie Charlop, a professor of psychology at CMC, the Center serves a large area of San Bernardino, Los Angeles, Riverside, and Orange Counties.
Each child at the Center receives an individually designed treatment program, while their parents are trained in behavior management techniques to use at home and in other community settings. The Center staff consists of graduate and undergraduate psychology student therapists. The therapists are trained and supervised by the director. The students enjoy a unique experience of helping special children and their families in addition to participating in scientifically based research projects.
According to the Center’s website, the community’s “demand and need for the Center is quite evident in the number of referrals. It is the only center of its kind in the area and one of only a few in the state of California and in the country. The Center enjoys an excellent national reputation among consumers and professionals alike.” To learn more about the Center, visit www.cmc.edu/ psychology/autism or call (909) 607-3879.