President Barack Obama's disability nominee Ari Ne'eman is facing questioning concerning his view that autism is a socially created disability not a medical disorder or disability and his well known opposition to curing autism disorders and to investing in cure oriented autism research. His representative character as an autism spokesperson is also questioned in light of the fact that he has an Aspergers diagnosis, was only diagnosed at age 12, and is very high functioning:
" According to your website you received a diagnosis of Asperger’s Syndrome at the age of twelve, you also appear to be a very articulate young man attending college and launching a successful career. Please explain how your circumstances equip you to understand and represent low-functioning people with autism and their caregivers?"
Age of Autism sets out the letter from John Gilmore of the Autism Action Network, formerly A-Champ, requesting clarification on Mr. Ne'emans views. Age of Autism also reports Mr. Ne'eman's statement that he is at present unable to address these concerns as he is following White House orders not to speak publicly on these important issues pending completion of the confirmation process:
" I was asked recently by the White House to avoid any further public appearances and speaking to the media until after my confirmation process is complete and I was checking with them as to whether or not it would be acceptable for me to respond to the questions you have sent. Regrettably, they've asked that I avoid answering any questionnaires not provided to me by Senate offices as part of the confirmation process. As a result, I cannot submit my responses right now."
I am not sure why a well educated young man of obvious high intelligence, excellent communication skills and advanced social skills that enable him to function so well in Washington World even has an Asperger's diagnosis let alone feels entitled to speak as a representative of those severely disabled by Autistic Disorder deficits, those who can barely communicate, with or without any assistive technology, those who injure themselves seriously out of frustration, perish as a result of being lost in a snow storm or live out their lives in institutional care. The New Yorker Magazine's face of autism is doing well hanging out with his Washington buddies but he does not resemble in any way people with severe Autistic Disorder.
President Obama's appointment of a media star, anti autism cure, very high functioning university student with Aspergers does not auger well for future research aimed at understanding the causes of autism and future treatments and cures. When it comes to hoping for some real autism science, some cause and treatment oriented autism research President Obama has spoken loud and clear by nominating as a disability representative a creation of the media elite. He has clearly told parents hoping for cures for their children "NO YOU CAN'T".
autism
Obama's on the way out unless he learns to govern from the middle and to stop doing a McGuinty.... governing to the special interest groups...
ReplyDeleteSo, I'd recommend he doesn't get too comfortable in his new role since the Senate is no longer Democrate and I believe... although I will admit to being uncertain... funding for his new position is under the new Health plan or the new stimulus pkg... and since the Senate is no longer Democrate controlled, and the Republicans dislike both of these endevours... It may never happen.
I honestly don't understand how Ari Ne'eman could still meet the criteria for any ASD. I'm not saying he isn't, I literally do not understand how the criteria fits him. I do believe he is the highest functioning ASD person I have ever heard of. Sure, some people with ASDs become professors, computer programmers, engineers, etc. But being a politician and having an ASD just seems...incompatible.
ReplyDeleteHe is able to navigate the world of Washington, the media and the social world quite easily even though he has an ASD.
I think non-verbal learning disability (NVLD) would describe him much better. Those with NVLD are somewhat similar to those with AS but their symptoms are less severe.
NVLD is believable. Asperger's is difficult for me to believe because in all of those I have known with AS their social difficulties are quite severe (much like mine).
"Being anti-cure is not the same as being anti-progress".
ReplyDeleteThis means that if kids can be cured by witch doctors, as long as they aren't embarassing Pharma by removing mercury, Ne'eman will be in favor of it.
For Ne'eman, it's all about protecting Pharma. Every word he says works towards that end.
Clearly the author has no true understanding of Autism or Autism Spectrum Disorders. People function on many different levels. It is not uncommon for people with Autism to learn to communicate as they grow. Many go on to college. Asperger Syndrome leans more to social deficit then language deficit. Many people with Aspergers Syndrome learn to communicate quite well.I speak from experience. I have a son who is in college and has Autism. He has worked very hard to deal with his disability.
ReplyDeleteHow come liars are always anonymous?
ReplyDeleteI agree with Stephanie. People with ASDs DO function in many different ways, on many different levels. That said, what makes an ASD, partly, is the ability to communicate and interpersonal relationships. To be a media or political personality requires skills that are just most beyond people with ASDs. Either that, or people with ASDs can use them, but not on a regular basis, or under pressure, or in a wide variety of contexts. There is too much social intuition involved.
ReplyDeleteMe, if I know ahead of time what I want to say, I can be very articulate. But any time I have to speak off the cuff, I sound like an idiot. I'm a much more elpquent writer than speaker.
I don't know what there is on John Gilmore's part to understand. Ne'eman has clearly said that a cure for autism is not only undesirable but would be morally reprehensible, he brooks no quarters there. I don't see how it can be any plainer.
ReplyDeleteNe'eman has also clearly stated that he (at least at one time) did not believe that autism was a disability, don't see how it can be any clearer.
With every new development in this pathetic "autism is not a disability saga", as a family we feel smaller and smaller, more powerless, and really just frustrated.
ReplyDeleteHowever I do know of one ASD kid who goes to college. What they do after that, do they get a job, do they end up clinically depressed, can they function in a REAL changing world...there is no study telling you that.
I want to know if there is research following the lives of children getting this or that intervention/treatment in to adulthood and beyond. Something that measures quality of life. IQ and number of words is not quality of life.