The politics of autism – an interview with John Pitney Jr.

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Autism politics is like faculty politics on PCP.

An Interview with John Pitney Jr., Professor of Politics, Claremont McKenna College, Author of The Politics of Autism: Navigating the Contested Spectrum

Politics of Autism

By Debra Muzikar

Why did you decide to write the book The Politics of Autism: Navigating the Contested Spectrum?

I have someone close to me who is on the autism spectrum. In reviewing the literature I found many books and articles from the fields of psychology and law but there was surprising little about the politics of autism. I thought there was a gap in the literature that I could fill.

There is disagreement about what autism actually is. Can you talk about that?

Autism is a construct. It is a term we apply to a set of behaviors. There are differences about how we diagnose that. There is no blood test or definitive brain test that can say with certainty a person is autistic. In addition, autism’s status as a spectrum adds to the complexity. There is a saying in the autism community “if you’ve seen one person with autism, you’ve seen one person with autism.”

There are disagreements about how we describe autism – from being a neurological disorder, a disease, a disability, a defect, a gift, a neurodiversity, etc. Can you comment on the politics of those descriptions and how the way we describe autism effects funding?

Descriptions are political. How you describe an issue determines what to do.

If autism is a disease, you seek a cure.
If autism is a disability, you seek accommodations.
If autism is a gift, you want to recognize that gift.
If autism is a realm of neurodiversity, there are many forms it can take and accommodations that can be made.

Can you talk about the politics of the term “Asperger’s”?

The interesting thing about Asperger’s Syndrome is that Hans Aspergers did not give it that name. The name was coined by Lorna Wing. Asperger’s is a more recent diagnosis being added into the DSM-IV in the 1990’s. Once it was added many people embraced it as their identity. Web groups emerged around Aspergers. Now the 5th edition of the DSM has dropped it as a separate category.

The incidence of autism has increased dramatically since the early 1990’s in California (from DDS statistics). Do you think there is a real increase in autism and how does that effect public policy?

I’m agnostic whether there is a true increase in autism prevalence. There has been an increase in awareness and a change in diagnostic criteria which can account for some of the increase. Has there been a real increase? Possibly. No one knows for sure. The big question is this. If there has been a true increase in autism prevalence, what has caused that increase? Of course, genetics is important. But what is the role of the environment? There may be a long time before we have clarity on this issue.

Autism is a bipartisan issue – both Republicans and Democrats have initiated legislation in regard to autism. Can you talk about that?

In 1975, Congress passed the Education for All Handicapped Children legislation. It was a bi-partisan initiative. President Ford signed this legislation reluctantly. He said the statute was making promises that could not be kept. We know now that he was right. Congress has never approved full funding for the statute, which is now the Individuals with Disability Education Act (IDEA).

Ron Santorum (R-PA) in the Senate and Chris Smith (R-NJ) in the House worked together on the Combating Autism Act (whose name was later changed to the Autism Cares Act because of protests from self-advocates over the name).

Earlier, Tom Harkin (D-IA) and Bob Dole (R-KS) worked together to produce the Americans with Disabilities Act (ADA).

In California, Republican state legislator Frank Lanterman, authored the Lanterman Act which was signed by another Republican Ronald Reagan when he was governor.

More recently, the ABLE Act was co-authored by Representative Ander Crenshaw (R-FL) and Bob Casey (D-PA).

Disability funding is one issue that both parties can work together on. Many Republicans are against social welfare for able-bodied people yet they are sympathetic to those who are disabled.

Can you talk about the influence this year’s presidential candidates have on autism?

Hillary Clinton has walked the walk since her early legal days in the 1970’s with the Children’s Defense Fund (CDF). Clinton and CDF Founder Marion Wright Edelman looked at census data and were concerned about the number of school age children not attending school. At first they thought it was because of race – African-American children not attending. What they found was it was children with disabilities who were being kept at home because schools were excluding them. This discovery was a major catalyst for the enactment of the Education for All Handicapped Children Act.

Clinton’s legislative proposal for autism is quite detailed and covers health insurance and screening among other things. There is a recognition that we have to do more for adults, and employment initiatives are part of her proposal.

Donald Trump, on the other hand, has done nothing for autism except to tout the vaccine issue. His properties have had lots of issues with ADA compliance Donald Trump. In addition, he made fun of a disabled person during one of his speeches. Trump’s record on disability issues is deplorable.

I’m a lifelong Republican and this will be the first time in my life I will not vote for a Republican presidential candidate.

Who will you vote for?

I haven’t made up my mind. It may be for a 3rd party candidate or it may be for Clinton if she and Trump are close in the polls.

The subtitle of your book is Navigating the Contested Spectrum – where do you see the most division in the autism community?

Everything involving autism is a matter of conflict – parents vs. self-advocates, parents vs. schools, Autism Speaks vs. the disability community, contention about ABA therapy, vaccines, different types of therapies, the cause of autism.

Autism politics is like faculty politics on PCP.

Do you teach Autism Politics at your college?

Only within the classes I teach. Last year one of my students in my introductory class was on the autism spectrum. He turned in terrific papers and participated. His papers were extremely well-written and well-researched. He is now a Sophomore and taking another of my classes. I find this to be a great sign.

How does the internet and social media effect our views and the politics of autism?

There are mixed effects.

The good effects are that it allows people to find one another. I am reading John Donvan and Caren Zucker’s book In A Different Key: The Story of Autism and in the early days it was very difficult to find information and each other.

The downside is there is a lot of disinformation out there.

It’s a blessing and a curse.

What are the politics of nonprofits in autism?

Most people don’t know Easter Seals is the primary provider for autism in this country. Easter Seals also has great information on Medicaid and social services on their website.

Autism Speaks is the best known organization for autism. They have been most successful in state insurance reform legislation. Statutes for insurance mandates have come through Autism Speaks. The organization has many critics, however. Their critics come from the vaccine groups who think Autism Speaks has a tie into big pharma and then others think Autism Speaks has been too accommodating of the vaccine theories. Self-advocates criticize Autism Speaks for not being included in the organization’s governance. They are the biggest nonprofit and therefore the biggest target.

How is autism a civil right’s movement?

ADA is a civil rights law. Complaints are to be made to the Civil Rights Division of the Justice Department.

IDEA is not enforced by the Justice Dept. but it is seen as the functional equivalent of a civil rights law. People with disabilities have the right to accommodations and the right to become a functional member of society. Before IDEA there was no federal law.

Autism effects scientific, research, human rights, and social/welfare policy.

What do you perceive as the biggest challenges for the autism community?

There are four major challenges.

1. Uncertainty – We don’t know how many people are affected, what causes autism, and what to do about it.

2. Complexity – There is a tremendous burden on parents who try to navigate the system. Parents spend a lot of time researching. Many parents take off lots of time for meetings. People who don’t have the resources are often left behind.

3. Inequality – People without resources don’t get the help they need. Non-English speaking and people who lack education aren’t able to access the system.

4. Contentiousness – there is a deep disagreement in the community. The time spent in arguing and fighting takes away from the time that can be spent working on solutions that will make the system better. The emotions about the issue of autism make it hard to find common ground.

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johnpitney

John J. Pitney, Jr., is the Roy P. Crocker Professor of American Politics at Claremont McKenna College. He received his B.A. from Union College and his Ph.D. in political science at Yale. In addition to The Politics of Autism, he is the author of The Art of Political Warfare and the coauthor of several books, including Epic Journey: The 2008 Elections and American Politics and After Hope and Change: The 2012 Elections and American Politics. In addition to his scholarly work, he has held staff positions in the U.S. Congress and the New York State Legislature. He has written articles for many publications, such as The Washington Post, The Wall Street Journal, The Christian Science Monitor, and Politico. He is a frequent commentator on politics and public policy for National Public Radio and American Public Radio. He maintains several blogs, including Autism Policy and Politics.

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