Dr. John J. PitneyIn his comprehensive book, The Politics of Autism: Navigating the Contested Spectrum, political scientist and Claremont McKenna College professor John J. Pitney details the uncertainties about autism in all its scientific, medical, communal, political, and personal forms. The book contends that our shifting ideas about spectrum disorders impact policy decisions on the local and national level. Pitney, who has written multiple books on politics, advocates for giving people on the spectrum more of a say in how they contribute to and are integrated into society. 2e News recently spoke with Pitney about his work.Q: What first turned your attention to policy and autism? I’ve always been interested in public policy and worked in government for many years. A family member is on the autism spectrum as well, and that gave me some first-hand exposure to it.Q: Before you had your experience and did the research for the book, did you have preconceptions of what autism meant?I suppose for a lot of people the introduction to autism was Rain Man, the movie with Dustin Hoffman. But only when I started drilling down into what autism really is did I have a clearer picture.Q: As designations like “autism spectrum disorder” replace terminology like “Asperger syndrome,” what is the relationship between language and understanding?As time goes on, psychologists will be able to refine the concept to a series of distinct but related conditions. As medical science progresses and we learn more about the brain, we’ll be able to better define it. We’re at the early stages of understanding. Q: How can we make policy about it when we don’t have a clear idea about neurodiversity?In the book I make three major points. One is about uncertainty. Just about everything about autism is uncertain. The definition is hazy. The causation is hazy. The one thing we know that doesn’t cause autism is vaccines. Everything else is very much on the table. Another point is complexity. Autism services are extremely complicated. Every parent of an autistic person is a service manager, juggling behavior therapy, speech therapy, physical therapy. The third aspect is contentiousness. Everything about autism is contentious, even what we call a person with autism. Is someone a person with autism or an autistic person? Both sides have passionate defenders. I recently heard the term “autist.” This is about people’s identity. Q: Do you think autism may be less of a “disorder” and might represent broader shifts in human genetics?True prevalence is increasing. Some of that may be better diagnostic techniques. But once you take that out of the equation, is there a true increase? Nobody knows. [perfectpullquote align=”left” bordertop=”false” cite=”” link=”” color=”” class=”” size=””]Autism services are extremely complicated. Every parent of an autistic person is a service manager, juggling behavior therapy, speech therapy, physical therapy.[/perfectpullquote]The question is what happened to autistic people in the past? One possibility is that they worked in jobs that didn’t require a lot of social skills. Those jobs were far more plentiful before the Second World War. Maybe their autism wasn’t noticed.Q: How many of those people did not have an opportunity to develop their gifts?That’s one of the great tragedies. There were probably a lot of great scientists and artists, but their talents weren’t made use of and they ended up out in the fields.Q: One of your points is the confusion of looking at neurodiversity in terms of medical or educational policy.There is a medical side to it. Sometimes people with autism can be in tremendous pain and react to it, but they can’t describe it. It’s also an educational issue, a workplace issue, a civil rights issue. Q: If it’s a medical issue, wouldn’t that allow for more comprehensive insurance coverage for services and therapies?Most states have enacted autism insurance mandates, which superficially sounds great, but there are two reasons to be cautious about that. One, for state legislators it’s a way of offloading a lot of services that would otherwise be delivered by government. “Oh great, we can have the insurance industry do it.”Secondly, the insurance mandates aren’t nearly as generous as people think. Various states have different kinds of dollar caps, age caps. It’s not as generous as a lot of autism parents would hope. Q: And if we look at neurodiversity in terms of education policy?There’s a source of tremendous inequality. IDEA (the Individuals with Disabilities Education Act) places responsibility on parents to be advocates for their children throughout the IEP and other processes. The people who are best equipped to do that are educated professionals. So, if you have parents who are doctors or lawyers, there’s a pretty good chance your family is going to do well on the IEP. They probably know how to work the system and can hire a special ed attorney. Whereas poorer families, who may not be aware of the system, tend to be grateful for whatever they get. Kids who come from affluent families get more behavioral therapy, while poorer kids get placed into special ed classrooms, where they’re with kids with Down syndrome, Hunter syndrome, cerebral palsy, all of whom have different kinds of needs and nobody gets everything that they need. The inequality in special ed is more stark even than the broader inequality of the educational system.Q: How do these policies affect twice-exceptional students?The frustrating thing for kids like that is that people say they don’t look disabled. “You don’t look autistic.” That’s tough because you have kids who are very capable but at the same time have genuine significant disabilities. A lot of people on the spectrum are very talented, but some of them end up not employed because they have difficulty with job interviews or being in an environment that isn’t generally welcoming to people on the spectrum. Q: A lot of people on the spectrum find workplaces in the tech industry.One of the great companies working with autistic people is Exceptional Minds. You look at any Marvel movie and in the end credits you will see Exceptional Minds. They train and employ people with disabilities, particularly the twice-exceptional, to create digital effects. Although, even twice-exceptional people have to confront unrealistic expectations. Just because you’re on the spectrum doesn’t mean you can count cards, as in Rain Man, and go to Vegas and make a million dollars. A great example is a twice-exceptional student of mine. He did a brilliant analysis in my political science course. Politics is not something one ordinarily associates with people on the spectrum. That’s not the stereotype. He’s an example of the kinds of things that people can do when they are motivated and not labeled. I think a lot of people on the spectrum end up being very shrewd analysts of human behavior because they have to work harder at it. What neurotypical people take for granted, autistic people have to work through intellectually. I have no literature on that. That’s just what I’ve observed.Q: Let’s get into the contentiousness part. What exactly are the sides on this issue?Nearly everything about autism or neurodiversity is contentious. On the one hand, you have parent perspectives versus self-advocates. You talk to a lot of parents, particularly parents with kids who have severe challenges, they’re looking for the cure. “Where’s the pill for autism?”
[perfectpullquote align=”right” bordertop=”false” cite=”” link=”” color=”” class=”” size=””]The inequality in special ed is more stark even than the broader inequality of the educational system.[/perfectpullquote]
The self-advocates tend to think of neurodiversity as a difference rather than something that needs to be cured. It played out politically a few years ago with the Combating Autism Act. Congress changed the name of that law to the Autism Cares Act because the Autism Self-Advocacy Network launched a campaign, “Stop Combating Me.” They regarded combating autism as combating something that was integral to their identity.Another dimension of the conflict is the vaccine theory. Even though it’s been studied to death and we know vaccines don’t cause autism, we still get a fair number of parents who are zealous in their belief that it does. There’s a lot of controversy about the various interventions. This is classic interest group politics. Applied behavior analysis, which a lot of people regard as the gold standard, competes with relationship development intervention, and others. The insurance industry comes into play. Within the disability community there’s some contention because autism seems to suck up a lot of the research money. Even seemingly anodyne stories are contentious. You probably saw the viral video of the neurotypical kindergartener holding the hand of the autistic kid. A lot of autistic people are angry about that. They call it compassion porn. A lot of people are offended and resentful of inspirational stories. Q: No one wants to be pitied.It’s telling that one of the great books about disability policy is entitled No Pity by Joseph Shapiro. It’s about the run-up to the passage of the Americans with Disabilities Act.Q: What’s next for you?I have a controversial book coming out in early 2020 called UnAmerican: The Fake Patriotism of Donald J. Trump. It does play into this because one of the topics I get into is Trump’s prejudice against people with disabilities.Read more about Dr. Pitney’s research at his blog: http://www.autismpolicyblog.com/.
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