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President Obama recently nominated Ari Neeman, a 22-year-old man with autism and the founder of the Autistic Self-Advocacy Network, to serve on the National Council on Disability, an independent agency which advises the President on disability policy. If confirmed by the Senate, Mr. Ne'eman would become the first person with autism to serve on the Council. However, the Senate has placed a hold on Mr. Ne'eman's nomination due to concerns raised by members of the autism advocacy community about his views on the potential for curing autism and his call to move resources away from autism research and towards programs that seek to accommodate people with autism in the community.
Mr. Ne'eman, who has Asperger syndrome, is a college senior who grew up in New Jersey and now attends school in Maryland. He founded the Autistic Self-Advocacy Network in 2006 to "advance the idea of neurological diversity, putting forward the concept that the goal of autism advocacy should not be a world without Autistic people. Instead, it should be a world in which Autistic people enjoy the same access, rights and opportunities as all other citizens." The organization advocates greater inclusion for people with autism and promotes accommodation over research to cure the disorder.
It is precisely this stance that angers many autism advocates, including Autism Speaks, one of the largest advocacy networks attempting to fund research towards a cure for autism. These advocates believe that Mr. Ne'eman's approach is too centered on highly-functioning people with autism and that he ignores those more severely affected by the condition who may have no hope for "normal" social interaction without significant medical intervention. Mr. Ne'eman responds to that concern with one of his own, namely that greater research into the cause of autism could lead to prenatal testing for autism and a corresponding increase in the number of parents who choose to terminate their pregnancies when they find out that their child may be autistic.
The conflict over Mr. Ne'eman's appointment does not seem to be ready to go away any time soon. But, as Lee Grossman, the director of the Autism Society of America points out in a recent New York Times article on the controversy, "[w]e have this community out there frustrated and bewildered and reaching out for any assistance, and that makes us battle-hardened . . . [w]e need to reframe the discussion." Whether Mr. Ne'eman will be a part of that discussion as a member of the National Council on Disability remains to be seen.