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Dear President Obama:
We the undersigned oppose the nomination of Ari Ne'eman to the National Council on Disability. Although we salute your effort to include a person with an autism spectrum disorder on the council, the choice of Mr. Ne'eman is wrong for the autism community and wrong for our country.
1) We are a nation in the throes of an autism epidemic, with 1 in 110 afflicted and hundreds of thousands of families struggling to confront the enormous financial and emotional hardships of this disorder. It is an insult to our community and to the people of this nation who will bear the enormous costs of millions of children and adults with autism that a 22-year-old student has been nominated to this position. Mr. President, how can you praise this nominee's "depth of experience" when he has not held a job, earned a degree or experienced life after college?
2) Mr. Ne'eman vehemently opposes curing autism, calling cure "offensive." However, many individuals who would benefit from a cure are incapable of disagreeing with him. Mr. President, will your appointees also recommend ending the search for cures for childhood cancer and diabetes? Or just autism? Mr. Ne'eman opposes the mission of the country's leading autism organization, Autism Speaks, which supports efforts to prevent and cure autism. He also opposes the depiction of autism as a crisis and does not address the very significant needs of the large population of individuals who are profoundly disabled by autism.
For a member of the National Council on Disability to not advocate for a cure on behalf of tens of thousands of people who suffer from disabling problems such as self injury, inability to speak, incontinence and dependence on others for their care - and who will cost society $3-5 million over a lifetime - is unconscionable. To fight against prevention and cure for such a serious disorder is inhumane and not representative of the majority in the autism community or the general population. Mr. Ne'eman's views are extremist.
3) Finite resources will not stretch far enough to support the large number of people now diagnosed with autism. Without making the goals of prevention and cure a top priority, there will not be sufficient funding to adequately provide for the growing population of people with autism, rendering Mr. Ne'eman's goal of providing better quality of life for those on the autism spectrum unachievable.
5) Rather than unifying the autism community, Mr. Ne'eman divides it. He equates the search for a cure with outright rejection of all autistic people. Mr. Ne'eman and a small faction within the autism community may personally oppose prevention and cure as is their right, but they do not represent the majority of people on the spectrum, particularly those who are so impaired that they face a lifetime in institutional settings at taxpayers' expense.
6) He erroneously claims the concept of recovery from autism is not scientifically supported. However, recovered individuals have been documented by medical science, and one university study puts the potential for recovery from autism at 10% (of children with autism). His denial of the possibility of recovery will impede efforts to improve the lives of people on the autism spectrum. Mr. Ne'eman, a very high-functioning individual whom Newsweek magazine described as a "master networker" and"fluent in policy-speak" does not require the interventions and treatments he disparages. He does not acknowledge the pain, isolation and life-threatening behaviors of our community's neediest individuals, nor their need for recovery or lessening of their associated medical problems and autistic behaviors.
7) The late Dr. Bernard Rimland challenged the prevailing "refrigerator mother" theory and replaced it with the theory that autism is a biological disorder. Despite Dr. Rimland’s important role in removing the burden of guilt from parents, Mr. Ne'eman now calls on the autism community to stop admiring Dr.Rimland and find new heroes. Among his contributions, Dr. Rimland championed vitamin B-6/magnesium therapy which has been conclusively shown to confer benefits to about half of all children and adults with autism who use it. Thousands have benefitted, but Ne'eman maligns Dr. Rimland and belittles his contributions. Mr. Ne’eman’s vilification of a great hero of the autism community is further evidence of his estrangement from the people he is meant to represent.
8) Mr. Ne'eman has obscured the harsh reality of autism with rhetoric. His littany of words - "paradigms, infrastructures, neurodiversity" - does not address the real life problems of people with autism, particularly those most profoundly impaired. Rhetoric and denial will not end the suffering. It will not provide futures for people with autism. And it will not prevent the next generation from being afflicted