UPDATE: This article is from 2014. It was circulating through my feeds and I didn't notice the publication date. Still useful stuff from Ari. Happy Friday!
The New York Times has a long feature on "the kids who beat autism." It is the article you expect it to be. They do talk to Ari Ne'eman, though, in order to portray it as balanced. Here's what Ari says:
The New York Times has a long feature on "the kids who beat autism." It is the article you expect it to be. They do talk to Ari Ne'eman, though, in order to portray it as balanced. Here's what Ari says:
Ne’eman and others strongly support treatments that improve communication and help people develop cognitive, social and independent-living skills. But they deeply resent the focus on erasing autism altogether. Why is no longer being autistic more of an optimal outcome than being an autistic person who lives independently, has friends and a job and is a contributing member of society? Why would someone’s hand-flapping or lack of eye contact be more important in the algorithm of optimal than the fact that they can program a computer, solve vexing math questions or compose arresting music? What proof is there that those who lose the diagnosis are any more successful or happy than those who remain autistic?
“We don’t think it is possible to fundamentally rewire our brains to change the way we think and interact with the world,” Ne’eman says. “But even if such a thing were possible, we don’t think it would be ethical.” He and others argue that autism is akin to homosexuality or left-handedness: a difference but not a deficiency or something pathological. It’s a view that was memorably articulated in 1993 when a man named Jim Sinclair wrote an open letter to parents of autistic children, igniting what would come to be known as the neurodiversity movement. Autism, Sinclair wrote, “colors every experience, every sensation, perception, thought, emotion and encounter, every aspect of existence. It is not possible to separate the autism from the person — and if it were possible, the person you’d have left would not be the same person you started with. . . . Therefore, when parents say, ‘I wish my child did not have autism,’ what they’re really saying is, ‘I wish the autistic child I have did not exist and I had a different (nonautistic) child instead.’ . . . This is what we hear when you pray for a cure.”
Ne’eman says society’s effort to squelch autism parallels its historical effort to suppress homosexuality — and is equally detrimental. He points out that in the 1960s and ‘70s, Lovaas’s team used A.B.A. on boys with “deviant sex-role behaviors,” including a 4-year-old boy whom Lovaas called Kraig, with a “swishy” gait and an aversion to “masculine activities.” Lovaas rewarded “masculine” behavior and punished “feminine” behavior. He considered the treatment a success when the boy looked “indistinguishable” from his peers. Years later, Kraig came out as gay, and at 38 he committed suicide; his family blamed the treatment.
Neurodiversity activists are troubled by the aspects of behavioral therapy that they think are designed less for the well-being of autistic people and more for the comfort of others. Autistic children are often rewarded for using “quiet hands” instead of flapping, in part so that they will not seem odd, a priority that activists find offensive. Ne’eman offered another example: “Eye contact is an anxiety-inducing experience for us, so suppressing our natural inclination not to look someone in the eye takes energy that might otherwise go toward thinking more critically about what that person may be trying to communicate. We have a saying that’s pretty common among autistic young people: ‘I can either look like I’m paying attention or I can actually pay attention.’ Unfortunately, a lot of people tell us that looking like you’re paying attention is more important than actually paying attention.”
Indeed, Ne’eman argues that just as gay people “cured” of homosexuality are simply hiding their real self, people deemed no longer autistic have simply become quite good at passing, an illusion that comes at a psychic cost. Autism activists point out, for example, that one-fifth of the optimal-outcome participants in Fein’s study showed signs of “inhibition, anxiety, depression, inattention and impulsivity, embarrassment or hostility.”And that's all I recommend you read of the article. YMMV.
