Last week, I called attention to a candid and illuminating memoir about autism in Harper’s magazine. The piece, as I pointed out, is refreshingly devoid of controversy. But that is rare in the world of autism, as this story in Sunday’s New York Times about Ari Ne’eman, the founder of the Autistic Self-Advocacy Network, makes clear. Last December, President Obama nominated Ne’eman to be a member of the National Council on Disability. Ne’eman, 22, and his supporters—who include other people on the autism spectrum—were thrilled. His critics were not. Charges: he’s too young and inexperienced, he’s out of touch with the most profoundly affected on the spectrum, and he doesn’t support the hunt for a cure. Now, a hold has been placed on Ne’eman’s Senate confirmation—he would have been the first person with autism to serve on the council—though it is unclear why. Ne’eman, as the Times points out, is a “lightning rod” for a dispute over how autism should be perceived and treated.
Ne’eman’s viewpoint about a cure is indeed surprising. In a profile I wrote about the college student last year, Ne’eman talked about his concerns that a focus on genetic research would lead to a prenatal test for autism, which might one day mean that people like him would cease to exist. Ne’eman, whose organization aims to “advance the principles of the disability rights movement,” is on the Asperger’s end of the autism spectrum. He can talk, read, write, look you in the eye, and have high-level conversations with high-level people. Rather than try to fix autistic people, he says, society should accept their differences and help people on the spectrum function better and live more independently.
Parents whose kids are severely affected by the disorder want autism to go away for good. At the very least, they want their children—many of whom are incapable of feeding themselves and using the toilet—to get better. Ne’eman, they charge, can’t possibly understand this and he shouldn’t be appointed a representative for the entire spectrum. The National Council on Disability, however, isn’t interested in genetic research; its purpose is to “promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, and that empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.” This is exactly the kind of dry, laborious and important work that gets Ne’eman so excited. Opposing his nomination won’t get anybody closer to a cure; instead, it could deny a passionate advocate the unique opportunity to lobby for autism rights and opportunities at the very highest levels.