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The Autism Rights Movement

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A Brown graduate with an M.F.A. from Columbia, a gifted poet published in The Paris Review, she has the accusations of the neurodiversity people ringing in her ears. ABA has, however, had significant positive effects. Anna Livia no longer engages in self-injurious behavior and has few tantrums. Her vocabulary, though tiny for her age, has increased. “I’d like nothing more than for her to develop the kind of consciousness that would allow her to join the neurodiversity movement,” Nash said. “If she decides to communicate without speech, that will be her choice, and I would love for her to be capable of such choices. It’s my fantasy that someday my daughter will go to her therapist to say what a terrible mother I was forcing her to do all this ABA. When that happens, I’ll know I succeeded.”

Parents like Nash are willing to try anything that will work—and potential therapies abound, from dietary treatments to remedial vaccine therapies, most prominently chelation, a process for removing metals from the body that is risky and unproved. Even the most enthusiastic advocates for pharmacological treatments (including a Lupron protocol that is basically chemical castration) admit that they are highly experimental. The neurodiversity community sees them as hazardous medical experiments on disabled children.

Many neurodiversity people also take exception to ABA. Camille Clark, who blogs as the Autism Diva, told me that she objected to the treatment’s goal, to render the autistic child “indistinguishable from his peers.” ABA, she says, “may make a very neurotic simulacrum of a normal kid who can pull off a normal act in some narrow situations, but there is no way to train a kid to be ‘normal’ inside using dog/dolphin/pigeon training methods.” Clark argues that her opponents misrepresent this perspective as an insistence that autistic children be left to “rot.” (Schafer, for one, has called them “pro-fester.”) But Clark protests that to lobby against harmful therapies is the opposite of advocating the abandonment of vulnerable children. “A loving parent wouldn’t expect a kid with no hands to practically kill himself trying to master the piano, and parents of autistic kids shouldn’t expect that their kid is ever going to be ‘normal.’ Period.”

In many ways, the question is whether it’s the autistic people or their parents who are unhappy and need fixing. Often enough, the neurodiversity activists argue correctly, the parents of autistic children conflate their unhappiness with their children’s. Parents are in a tough place figuring out how to respond. What should be treated, and what left alone? Much of the debate hinges on divergent ideas of love. The vaccine people believe families who don’t accept their hypothesis are neglecting their children; the neurodiverse people believe parents who describe their autistic children as diseased are insulting them. Thomas Insel, director of the NIMH, told me, “I’m at a point where I think that the parents probably know more than the scientists about autism, and I’ve heard families say, ‘I wouldn’t trade my child’s autism for anything; it’s been the best experience of my life.’ I admire that, but even so, if you could get rid of autism, I would say, go for it. There are plenty of other challenges in life that will make people miserable; let’s at least have people face them without having to wear diapers.”

I was interested by how much everyone talked to me about the cure. There are thousands of Web pages devoted to advocating for a cure, arguing against a cure, discussing when and how a cure should be administered. The fact that all of this is mired in the hypothetical does not dissuade either side. Alex Plank, who founded the Wrong Planet Website, which has over 19,000 members, says, “Since no cure exists, I don’t have to be opposed or for it. The thing now is to deal with the autistic people who are already on this planet. The organizations with the best connections were founded by parents of people with autism, who aren’t going to have the same priorities as autistic people, especially if those parents’ idea of success is to make their kid the same as themselves.” Seidel concurs. “I am not opposed to seeking a treatment that might be useful to people in the future who want it, but I am concerned about how to make life positive for the people on the autistic spectrum who are here now, a group that happens to include my own child.”

But of course some autistic people do want to be cured, now. Jonathan Mitchell, an autistic who blogs against neurodiversity, says, “Most persons with an autism-spectrum disorder have never expressed their opinions on someone’s blog and never will. The neurodiverse often reach a vulnerable audience, as many persons on the spectrum have low self-esteem. Neurodiversity provides a tempting escape valve.”


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