Sunday, March 28, 2010

Ari Ne'eman should not serve on the National Council on Disability

President Obama, with all due respect, you made a mistake when you nominated Ari Ne'eman to serve on the National Council on Disability. While Mr. Ne'eman has accomplished much in spite of his disability, his views on autism will prevent him from being able to fairly represent the needs of most people with autism.

Autism is a very complex disorder and people with autism have an enormous range of functioning. That is the heart of the problem. Mr. Ne'eman, and others like him, represent the very pinnacle of what a person with a diagnosis of autism will be capable of. Mr. Ne'eman appears to be able to function as well as any other non-disabled person would be able to - in spite of his autism.

The overwhelming majority of people with autism are not so fortunate.

The least fortunate of this group are locked in their own world and are completely unable to communicate with the outside world. The majority of people with autism fall somewhere between these two extremes. As you look at people who suffer from autism, one thing is clear. Most will have life long struggle to accomplish the things that "normal" people take for granted. They will have a hard time holding down a job, going to college, starting a family, being able to live on their own, or even, in some cases, being able to talk.

The problem with Mr. Ne'eman is that he feels that the disabling aspects of autism are not caused by the disorder but rather by the prejudices of society. He seems to think that if society were different that people with autism would not have such a hard time. And he is partially right, for people like him, the attitudes of society can make a large difference.

But most people with autism are not like him. If you were to spend any time watching children with autism, you would know that the disabling aspects of autism are caused by the disorder itself and not by the attitude of a neighbor down the the street.

Mr. Ne'eman also feels that evidence based medicine is somehow mistaken in thinking that therapies like Applied Behavior Analysis (ABA) can help children with autism learn. Fortunately, he is mostly alone in these opinions. There are countless children from around the country that have been helped by therapies such as ABA and almost all major health and autism advocacy organizations support the use of such therapies.

Treatments like ABA can make a large difference in the life of a child. Just ask any expert in the field whether such treatments can be effective and you will get a responding yes.

But most importantly, Mr. Ne'eman advocates against looking for the cause of autism and strongly opposes the idea of curing autism. He is quite happy the way he is and does not want to change.

How selfish of him to seek to deny others the chance to be able to do as much with their lives as he has with his.

Autism is a growing health problem that changes the lives of 1 in 110 children in this county today. At the rate it is growing, it is likely within the next ten years this number will stand at 1 in 50 children.  There need to be effective treatments for autism. We, as a country, need to find the answers to want causes this condition and to prevent it, if at all possible.

We need a cure for autism.

Mr. Ne'eman opposes these goals and thus ignores the needs of those most challenged by autism. He is not qualified to speak for their needs, he is only speaking for the needs of other extremely high functioning individuals like him.

President Obama, you might have had good intentions in nominating Ari Ne'eman, but you made a mistake. Let me put this in simple terms. If we were talking about people who were unable to walk and were confined to a wheel chair, Mr. Ne'eman would be up walking around with just have a minor limp and advocating against the use of wheel chairs.

There are other people with autism who you could nominate that would do a better job of representing the needs of all people with autism.

1 comment:

  1. You forgot to mention the fact that this never employed 22 year old has stated that the solution to unemployment among persons with autism is to eliminate social pleasantry as a criteria for hiring. Even if one would argue for Ne'eman's nomination stating that the NDC has no control over policy or funding for cure-related research, these types of naive and simplistic solutions are something we don't need on the NDC.

    Also, there is the fact that Ne'eman sactions bullying by having an association with Clay Adams who enjoys mocking me and ridiculing me and making bigoted statements about my disability as well as his attempts to bring back the Bettelheim era, which unlike himself, I had the misfortune to live through. ASAN has never returned the money Mr. Adams has donated to them.

    All the more reason for any senator to vote against confirming him.