I'm posting this thread for adriant.esq as he's keen to have us see this, but doesn't know how to post a new thread.  

http://www.nytimes.com/2010/03/28/health...utism.html

Nominee to Disability Council Is Lightning Rod for Dispute on Views of Autism
By AMY HARMON
Published: March 27, 2010

When President Obama nominated Ari Ne’eman to the National Council on Disability, many families touched by autism took it as a positive sign. Mr. Ne’eman would be the first person with the disorder to serve on the council.  

But he has since become the focus of criticism from other advocates who disagree with his view that society ought to concentrate on accepting autistic people, not curing them.

A hold has been placed on Mr. Ne’eman’s nomination, which requires Senate confirmation. Whether the hold is related to the criticism of Mr. Ne’eman (pronounced NAY-men) and what it might take to lift it is unclear.

But Mr. Ne’eman, the 22-year-old founder of the Autistic Self-Advocacy Network, seems to be a lightning rod for a struggle over how autism will be perceived at a time when an estimated 1 in 100 American children and teenagers are given such a diagnosis.

Mr. Ne’eman is at the forefront of a growing movement that describes autism as a form of “neurodiversity” that should be embraced and accommodated, just as physical disabilities have led to the construction of ramps and stalls in public restrooms for people with disabilities. Autism, he and others say, is a part of their identity.

But that viewpoint, critics say, represents only those on the autism spectrum who at least have basic communication skills and are able to care of themselves.

“Why people have gotten upset is, he doesn’t seem to represent, understand or have great sympathy for all the people who are truly, deeply affected in a way that he isn’t,” said Jonathan Shestack, a co-founder of the advocacy group Autism Speaks, whose mission is to help finance research to find a cure.

Mr. Obama’s seven other nominees to the council were confirmed this month. But parliamentary procedure in the Senate allows one or more members to prevent a motion from reaching the floor for a vote by placing an anonymous hold on the action, which an official with knowledge of the proceedings said had been done in Mr. Ne’eman’s case.

The hallmark of autism is impaired social interaction, but the disorder can take an array of forms. Some people may hurt themselves or be unable to speak. Others may be hyperarticulate but unable to parse body language or facial cues. Some may have cognitive disabilities; others may have savant skills.

Mr. Ne’eman declined to be interviewed, citing the pending action on his nomination. But in previous interviews with The New York Times and other publications, he has argued that those most severely affected by autism are the ones who benefit least from the pursuit of a cure, which he suggests is unattainable anytime soon. Instead, he says, resources should be devoted to accommodations and services that could improve their quality of life.

Historically, the kind of genetic research supported by many parents of children with autism, Mr. Ne’eman has said, has been used to create prenatal tests that give parents the ability to detect a fetus affected by a particular condition, like Down syndrome, so that they can choose whether to terminate the pregnancy.

“We just think it makes more sense to orient research to addressing health problems or helping people communicate rather than creating a mouse model of autism or finding a new gene,” Mr. Ne’eman has said.

A senior majoring in political science at the University of Maryland, Baltimore County, Mr. Ne’eman himself has a diagnosis of Asperger syndrome, a form of high-functioning autism.

Mr. Ne’eman, who grew up in East Brunswick, N.J., has said his condition caused him to be bullied in high school. His social anxiety was so great, he sometimes picked at his face until it bled. He was eventually transferred to a school for students with developmental disabilities.

He founded his self-advocacy organization, which has grown to have several chapters across the country, in 2006, and he served on New Jersey’s Special Education Review Commission, where he wrote a report calling for legislative action to end the use of aversives, restraint and seclusion on students with disabilities.

Mr. Ne’eman also became a critic of Autism Speaks, the largest advocacy group in the country, organizing protests last fall over a fund-raising video.

But the split among autism advocates, suggests Lee Grossman, director of the Autism Society of America, may simply reflect the unmet needs of a growing population, for both research into potential treatments and for programs to support jobs and independent living.

“We have this community out there frustrated and bewildered and reaching out for any assistance, and that makes us battle-hardened,” Mr. Grossman said. “We need to reframe the discussion. From our perspective, it’s great to have a person on the spectrum being nominated to this committee.”

A version of this article appeared in print on March 28, 2010, on page A16 of the New York edition.

the real holdup on this nomination is the republican holdout,in that they refuse to cooperate with anything that President Obama wants. They are the ones who have taken up autsqueaks banner. Doesnt mean they believe in autsqueaks at all. They use anyone who objects, to accomplish their goals.

talk about  nasty trolls, they are it

It does bring Ne'emans views to the forefront , which is good for the cause.

Obstructionists!

Against, instead of For...

(sigh)

they are only against because they are not the party in power. they do not represent the people (neither do most dems.)just their own re-election bids.

Oh.  I think that person has been personally emailing me the last couple weeks with advice on advocacy issues I am having at my school.  Cool!  Maybe we should write to our senators and show our support?

that would help!

I just wrote both of mine!  

I am grateful to Marcia for setting up this thread. I picked up the story by Google Alert and thought you guys and gals might wish to discuss it, especially those in USA. I am not as familiar with US politics as I am with UK politics, but I have just retired from working in a government post, so I am well familiar with the dirty tricks that go on in Committees. On the surface it seems very wrong that a valid representative can be so barred; but, I agree with skyblue1 - the story is bringing Ari Ne'eman to a far wider audience than would have been the case if he had been accepted 'on the nod'. I hope something really good comes out of this for the auties and aspies in USA.

thanks for the story , for some reason I had thought he was already in.

Here is a web page to help those of you who are Americans in locating your senators...

http://www.senate.gov/general/contact_in...rs_cfm.cfm

There have got to be millions of people in the US who take the stance that we do, if we organize them we can give the senate hell!  Let's do it!

just like we want republicans to vote for him, we need democrats to stand up for him.

I've emailed Senators Stabenow and Levin for Michigan, and will be calling and writing letters tomorrow.  I've also posted a request on another aspergers forum, and I sent out a mass email to my school's disabilities club.  Unfortunately our autism group is a branch of autism speaks, but we'll make do without them.  Mr. Ne'eman deserves our support!

he will of course be working for other causes ,also, if he gets in. But he is the perfect representative for us

I had thought he was already in as well...

(I recall other nominees were blocked, but cannot think of whom...anyone know where I can find a list?)