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The Autism Rights Movement

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“There is a wide diversity on the autism spectrum,” he said, with measured sobriety. He nodded and then added, a touch autobiographically, a phrase that many in the autism community use: “When you know a person on the spectrum, you know one person on the spectrum.” One of the clichés of autism is emotional deadness. Spending time with Seidel and Ne’eman, I felt the opposite. They both use the tonalities of logic, but the logic of the heart. They are a little weird, but then most intelligent people are weird deep down, and there was something about the frankness with which Seidel and Ne’eman and other activists I met displayed their fascinations that was refreshing, even relaxing; in fact, I felt with them that my proud knack for observing social niceties was also a tissue of pointless lies.

Please don’t write about them,” Lenny Schafer, editor of the prominent Schafer Autism Report, adoptive father of a severely autistic child, and a vaccine activist, said. “It’s a handful of noisy people who get a lot of media attention but do not represent a broad swath of the autism community. Best for them to be ignored. They want to redefine autism as something nice that Einstein and Bill Gates had. They’re trivializing what autism really is. It’s like stealing money from the tin cup of a blind man when you say that it’s not an illness.” Mark Blaxill, a leading vaccine parent, called them “a nuisance” and expressed the common concern that they were not in fact autistic. “There’s a militancy associated with celebration, pride, and sense of identity—all that’s fine and wonderful,” he said. “They’re also just a little sad. What kind of person would need to attack parents trying to help their kids?” John Best, parent of a child with autism and author of the Hating Autism blog, puts it most harshly: “It’s time to put an end to celebrating having brain damage.”

To me, it seemed clear that everyone in this debate expends a lot of energy defeating straw men. While those seeking a cure for autism do not (as their opponents in the neurodiversity movement claim) want to obliterate a vibrant subculture of atypical thinkers, the neurodiversity activists also do not oppose helping kids—though they do take exception to some treatments used on children. Researching this article, I spent a lot of time being talked at by people on both sides, one more doctrinaire than the next. Not since my early days reporting from the Soviet Union had I found myself so bullied about what I should and shouldn’t be mentioning. Roy Richard Grinker, author of a pellucid book called Unstrange Minds that deals with his daughter’s autism, pointed out that the vaccine activists and their neurodiversity opponents do share one thing, a deep suspicion of the motives of scientists: While the neurodiversity people are furious that scientists want to cure autism, anti-vaccine parents rage that they are studying the wrong things. “I’ve compared it to the standoff between intelligent design and evolutionary biology, that both use the language of science but with premises so different that dialogue is impossible,” Grinker said.

Some activists oppose autism research, fearing it will lead to eugenics. Their fear is legitimate: how would parents react if they could identify an autistic fetus?

The idea that vaccines cause autism got a boost in March, when the Centers for Disease Control settled with the parents of 9-year-old Hannah Poling on the grounds that her autismlike symptoms were caused by vaccines that aggravated an underlying mitochondrial disorder. This was widely misinterpreted to mean that the vaccine side had won, a false conclusion that drives neurodiversity activists crazy. “I protest the wholesale characterization of people on the autism spectrum as toxic. It’s scientifically incorrect and symbolically offensive,” Seidel says.

The most important research from the other side is being done by Michael Wigler at Cold Spring Harbor Laboratory, who considers autism “entirely genetic,” although he emphasizes that these genetics are hugely complex, involving as many as 200 genes, and that how they translate into behaviors is not yet understood. Even research like Wigler’s is sometimes opposed by those touting neurodiversity, who fear that it will lead to eugenics. This fear is legitimate: Ninety percent of pregnancies that test positive for Down syndrome are terminated. How would parents react if they could identify an autistic fetus? “There are serious problems with taxpayer and well-meaning charitable funds going toward that kind of research,” Ne’eman says. “We need an awareness that not every dollar given toward autism causes is helpful to autistic people.”

I was uncomfortable with this anti-scientific position but was nonetheless moved by the activists’ glorious vision of a world that would err on the side of acceptance rather than pathologize difference. When I spoke to parents of children with extreme autism, however, the neurodiversity perspective could feel entirely beside the point. Jennifer Franklin Nash was living happily in New York when her 2-year-old daughter, Anna Livia, was diagnosed. She decided the best treatment would be a rigorous ABA (applied behavior analysis) program that could deal with Anna Livia’s violent tantrums. Since there were no such programs in New York, she applied out of the city. When Anna Livia was accepted at a school in New Jersey, Nash and her daughter moved there; Jenny’s husband, a surgical resident at Sloan-Kettering, could not leave. Jenny now lives in a community where she knows no one. ABA has to be practiced not only one-on-one throughout a long school day but also all the time at home, and so every day, Jenny waits for Anna Livia to come home at 4 P.M. and then works with her nonstop until 9 P.M., reinforcing appropriate speech and actions, tallying rewards for everything done right and demerits for everything done wrong. When Anna Livia goes to bed, Jenny soothes herself watching movies. She wakes at 7 A.M. to make breakfast for her daughter and does more ABA until the school bus comes. Exhausted, she climbs back into bed so that she will be bright enough to cope when 4 P.M. rolls around.


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