NY Times article about Ari Ne’eman's nomination to NCD
http://www.nytimes.com/2010/03/28/healt ... m.html?hpw
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.
YouTube.com
Ari Ne'eman would be the first person with autism on the National Council on Disability.
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.
CockneyRebel
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Big Pharma isn't going to allow someone into the national spotlight who advocates against spending money seeking a cure.
Besides, when it comes right down to it, Obama's not likely to go to bat too aggressively to defend an appointee whose opinions on cure-seeking might be interpreted as somewhat pro-life.
DenvrDave
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Here is someone making some sense (from the article): 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.”
Just having the discussion about the split in views is a good thing. It at least gives us a chance at moving forward into a more unified community that more fully understands the whole range of issues and, then, can set better goals.
_________________
Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).
Thank you my Senate friends.
The Acorn of Autism should not be the voice.
Street protests, call for confrontation with people who support scientific research, are rabble rousers.
Acceptance? The entire Universe should be changed, so the Autistic do not have to?
Asperger's Syndrome is outside the DSM, it is not a model for all autistic people.
You will not find them at the University. Asperger's yes, the sub clinical, but they are not the focus of autism.
ASAN is a small hate group seeking to make a name. They did, it is a bad name.
While doing nothing but attack everyone who has been working for answers for years, ASAN did not even have an outline of a program for support, jobs, independant living, only a demand for acceptance.
Even that did not apply to people who disagreed with them. I did, they called for me to be banned from Wrong Planet.
His whole attack was based on an old video and the word cure. In his mind cure became abortion, genocide, the final solution. Perhaps he bought the wrong Dx.
If he was autistic he would most likely read that research into a cure has found that autism is broadly spread through the DNA, 22 sites at last count, and is not a single point defect like Downes.
There will be no abortion based on that research, but it has brought a greater understanding of the whole of genetics.
Being a genetically caused natural differance, there will be no drug.
There is still a great need for research into the cause, for while the sub clinical report traits that run generations back in their family, all of those people did get by and lived in the world.
Those confined in Institutional care, and those in assisted living, have much more isolation from the world, and acceptance is not a working plan.
Early childhood intervention does seem to work, and if it is the differance between assisted living and living in the world, it is a potential treatment, which you will find is on the list of Autism Speaks supported research.
We have no idea why one is Asperger's, and another will never develop basic skills. Both are Autism, but it comes in many forms.
Perhaps there is a clue in normal development till two or three, then regression. It could be a childhood virus, that all were exposed to, but as we know from one, only some went on to develop Polio. There, some got a limp, others braces, and crutches, and some an iron lung. Sounds like Autism.
There was not a lot that could be done once it developed, but from discovery of Virus, to Vaccine, to total cure, it is no longer with us. Do you remember how long it to to discover and isolate the AIDS Virus? Still no Vaccine, But in related science, Human Papillion Virus, genital warts, now has a vaccine.
If Autism can be prevented, it will be. I will continue to support the advance of science. Without Autism, I would still be a Geek. I think a much more effective Geek.
As for acceptance, jobs, training for independant living, most of the country has that problem now.
We are on our own. The world cannot help us, for one they do not understand us. We are few.
Self help is the only path. We will not get there by extorting a payoff, protesting in the streets, but we need it, and if we develop it, support will come.
Until there is a cure there will be millions who are on the Wrong Planet. We do have a culture, a sameness through a lot of differance. We do have talents, we do work, and it could be better.
Since some of the truths we hold to be self evident here, are alien to the rest of the world, the best intentioned non autistic could not do it for us.
At 63 I will tell you, it gets better, it does not go away.
We can do well, we do do well, we just need to do it sooner. No one can do it for us.
I would ask the Senate to only confirm someone who understands the recent science, and will further that study of the causes and treatment of Autism.
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