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The Autism Rights Movement

Kathleen Seidel  

Under Seidel’s tutelage, I began to understand that there were two basic principles that I did not yet grasp. The first is the variety of experience that gets lumped under the words autism spectrum, which is not a simple range from milder to more severe symptoms but rather a three-dimensional universe of behaviors as challenging to define as the notion of human personality itself. The other is that some people who lack what consensus deems essential to happiness are happy nonetheless. Much as the Grinch cannot believe that Christmas can come without packages, boxes, or bags, so I thought happiness could not come without what looks to the rest of us like intimacy. I was wrong.

The neurodiversity activists include both people on the spectrum and their parents; their opponents likewise include both groups, with a heavy concentration of parents. There are in reality three sides in this debate: those who believe autism is caused by environmental toxins (especially vaccines) and should be cured by addressing those pollutants; those who believe it is genetic and should be addressed through the genome; and the neurodiverse, who believe that it is genetic and should be left alone. These camps are blatantly hostile to one another. Gerald Fischbach, the scientific director of the Simons Foundation, one of the largest private funders of autism research, says, “I’ve never seen an advocacy community as intense and demanding. The mercuries get livid when people talk about genetics. The geneticists get furious when people talk about environmental toxins. And these activists get angry at both.”

To complicate things further, it may be deceptive to talk about autism as a single illness at all. According to Steven Hyman, former head of the National Institute of Mental Health (NIMH) and now provost of Harvard, the illness is likely to “turn out to be a family of related brain problems that won’t respond to the same treatments.” In the seventies, the rate of autism was said to be about one in 10,000; it is now one in 150. But what do these numbers mean? If an autism epidemic is sweeping the country, then huge resources to address it are appropriate—to treat it, to find a cause, to figure out how to acknowledge this new population. If we are now describing as autism both what was once misdiagnosed as mental retardation and what was once accepted as eccentricity, there is no public-health crisis.

There are contradictions even within the different camps. While vaccine activists tend to dismiss the articulate neurodiversity people as “not really autistic,” merely “quirky” individuals hijacking the fates of those more seriously affected, they fight for research by pointing to swelling autism rates that include just such people.

I had dinner with Ari Ne’eman at Blue Hill in New York. He is not without social graces, but you can feel the effort in them, traces of being “the only kid in third grade who brought the newspaper to school in the morning.” He said, “I like to say that neurotypical social interaction is a second language. It’s not as if we can’t learn it. It’s just that it doesn’t necessarily come easily to us.” When Ne’eman was in high school, his extraordinary intellectual skills and his striking social deficits meant that he was considered both gifted and disabled. “People think of those as opposites, but that’s not the case. As a public-relations point, it’s nice to point to people like Vernon Smith, a guy with Asperger’s who won the Nobel Prize in economics, or [music critic] Tim Page, who has Asperger’s and won a Pulitzer. But it would be a mistake to say that people carry worth and should have their differences respected only if they can deliver some sort of special talent.” Ne’eman started speaking out about autism rights when he was 16 and in school in New Jersey; before long, he was appointed by the governor to the New Jersey Special Education Review Commission, and became chair for the Public Policy Committee for the New Jersey Coalition for Inclusive Education. He is attending the University of Maryland, Baltimore County; he jokes, “In my spare time, I’m a full-time student.” His parents, he says, “were some of my strongest, strongest allies. They told me I could grow up to be whatever I wanted to be. Early on it was a paleontologist, then it was a physicist. I briefly had an obsession with the New York Yankees, and I still don’t understand what the attraction was there. And then it became politics and the general social sciences, and that sort of stuck.”

I asked Ne’eman about the initiative from some in the neurodiversity movement to have Asperger’s, like homosexuality, removed from the illness list in the DSM. Did he agree with that approach?