Friday, December 18, 2009

Is Obama Nominee Ari Ne'eman Flip Flopping on Autism as a Disability? But Not on His Opposition to Curing Autism?

Several autism blogs, including mine, have stated that Obama nominee Ari Ne'eman does not view autism as a disability.  In response Mr. Ne'eman  has apparently sent emails to Neurodiversity bloggers like Astrid and Lisa Jo Rudy stating that he does in fact view autism as a disability.  He has not apparently distanced himself from his positions opposing the right of parents to seek to cure their own autistic children. 

If Mr. Ne'eman now sincerely believes that autism is not a disability great but that is not what he said in the past.  And just as importantly he should make it clear that he does not oppose curing autistic children and in fact has no right to oppose the efforts of parents to seek cures for their children.

Following is a commentary I left in response to Mr. Ne'eman's statements at a Neurodiversity autism site authored by Lisa Jo Rudy, edited to fit the context of this comment:

1. Mr. Ne'eman's comments about autism not being a disability.

Ari Ne'eman in 2006 wrote an essay which is posted on the ASAN web site in which he in fact states that Autism is JUST a difference not a disease and NOT a disability:

"Difference Is Not A Disease"

"We see the world in a different way than our neurotypical peers (neurotypical is a word in the autistic community meaning those of the majority neurology). This does not imply a defect, but merely a difference — one that we have just the same right to as those of a different race, nationality or religion. Due to that difference in perception, we interact socially in different ways. Yet our quirks and eccentricities should be just as legitimate as the social skills of the mainstream.


"We should recognize what diversity of neurology has contributed to the human race and what it can bring to the future. Difference is not, in itself, disability; it becomes disability when it is not properly understood and accommodated. Someday, I hope the world will recognize that those who think in different ways should be welcomed.""

Ari Ne'eman, Nov 24 2006, ASAN web site

Mr. Ne'eman now claims through messages sent to Neurodiversity bloggers that he does not claim that autism is not a disability. His past writings say otherwise. In the best light Mr. Ne'eman  is flip flopping on the issue of autism as a disability. 

2, Mr. Ne'eman is not a Doctor.

And he does not have Autistic Disorder diagnosis and yet he purports to speak on behalf of people with autism, which would include my son with Autistic Disorder whom he has not met and with whom he has ABSOLUTELY nothing in common.

A person with Aspergers, unlike the 30-51% of persons with autism does not, by definition in the DSM, have an intellectual deficit. The 30-51% of autistic persons having an ID figure is taken from the CDC report on autism prevelance released today.

Mr Ne'eman has no obvious communication difficulties judging by his writings, his video performances and his numerous Big Media interviews.

Mr. Ne'eman has no social deficits judging by his ability to interact extremely well with Washington politicians.

Mr. Ne'eman has no reported behavior challenges that are visible in any of his appearances.

I have a son with Autistic Disorder and Mr Ne'eman has no right to speak on his behalf or say that my son's autism is JUST a difference not a disability. I was visiting autistic persons in institutional care in my home province of NB Canada long before Mr Ne'eman's media skills and connections launched his career as an "autistic". I have seen the reality of autism for those who are in fact severely autistic. Many are living lives dependent on others visited only by parents who eventually die. That is an autism reality that Mr Ne'eman's pontificating about autism being JUST a difference does not touch on.

3. Mr. Ne'eman's Opposition to Curing Autism

I assume that Mr. Ne'eman has not flip flopped on his declaration that WE, referring to persons with autism, do not want to be cured. Mr Ne'eman has no experience as a person with Autistic Disorder to even begin to understand the realities of life for those who end up living in institutional care. or wander off to freeze to death in snow storms, or drown in local pools, or like my son wander into automobile traffic obivious to the dangers to his safety (he was rescued by a good Samaritan, a "Neurotypical").

Autism disorders are not JUST differences as Mr. Ne'eman says to this day on the ASAN web site. They are for those with severe Autistic Disorder exactly what they are called ... Disorders . They are severe disabilities.

 Mr. Ne'eman does not have  the right to tell OTHER parents that they should not seek to cure their children of their very serious disorders.

Mr Ne'eman is not the first person with Aspergers or High Functioning Autism to declare that people like my son do not want to be cured. NO ONE has the right  to tell parents of other people's children not to seek cures for their children's autism disorders.

President Obama has done a great disservice to the autism communicty and will only divide the autism community further by appointing this person who is wobbly at best on whether autism disorders are disabilities and who opposes the right of autistic children to be cured of their disorder should a cure ever be found .... should the research to find a cure ever be undertaken.

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jonathan said...

Harold: Ne'eman's words: Difference is not, in itself, disability; it becomes disability when it is not properly understood and accommodated. are a rewrite from the original essay in which the words were difference is not disability. He clearly at one time believed autism is not a disability. Whether or not he believes that now, I don't know for sure.

One explaination is that because he has to work with so many organizations with the word "disability" in their names including the council on which he now wishes to serve, that he had to claim autism was a disability to pursue this agenda.

farmwifetwo said...

It's only a disability if he's going up against Autism Speaks and looking for $$$$ for ASAN.

I wish he and his merry band of followers would take their autism to someplace like China for a year. Where they don't know the culture nor the language and see what it's truly like to be without speech and language. To be completely overwhelmed by new sensory situations.....

Then maybe they'd understand what it's truly like to be "helpless" and autistic.

But why should they. They prefer to rant against those who are NT (aspergers square 8's last 2 posts) and stereotype their own dx's. Not all with autism dislike going places and doing things. Just b/c my youngest has difficulty speaking and flaps steady in new situations doesn't prevent him from enjoying a fair midway, a trip a restaurant or going visiting to other peoples houses with us or having a sitter over.... So, they lie even about other people who may have the same diagnosis trying to prove they it's "ok".

It's not "ok".

Fred said...

Here is a clip from an interview with Mr. Ne'eman. There are several more on that channel. In this one he talks about disability, particularly severe autistics.

M.J. said...

I think you forgot to mention one of the bigger problems that Mr Ne'eman brings with him from ASAN - "self identification".

The idea that someone can "identify" with autism, decide that they have this disorder, and then go out and speak for everyone with autism is problematic, at best.

ASAN seems to encourage this, at least they have in the past. I remember that one of their board of directors self diagnosed and even though they cleaned the reference from their web site, it is still in the way back machine -

"Scott diagnosed himself with Asperger's Syndrome (AS) during his freshman year at Rensselaer Polytechnic Institute in 1999. He received a clinical diagnosis of AS from Penn State's Psychological Clinic six years later. "

Anonymous said...

Hi ; just wanted to say I enjoy readng your blogs and well thought out comments.Thank you for being a strong voice in the autism community.Hera

Astrid said...

You say that Ari cannot possibly speak for your son, or at leas the cannot say that your son should not be cured. Now since your son is a minor I will accept for now that you can legally speak for him while you are neither autistic nor a doctor, but that is not the point here. The reason that Ari has every right to oppose cure for autism, is that there is no non-arbitrary line that will distinguish those you call "Asperger's" or "high-functioning" from those you call "low-functioning", "severe" or "autism disorder". There is no way to tell how a 2-year-old, in the future possibly eligible for cure, will turn out in adulthood. You cannot exclude people like Ari, or me for that matter, from involvement with autism policymaking just by judging us too high-functioning or "not like my child", because you do not know what we were like when we were children, and you havent'even definied yet where you'd draw the line of "functioning levels", so it isn't really relevant. (So far, it looks like your criteria of "functioning levels" includes assessment of cure opinion, since you do value input from autistics who are "high-functioning" in every way that the neurodiversity folk you exclude are, but who happen to want a cure.)

The other reason why Ari has every right to oppose cure, is that it will effect every autistic (unless distinct genetic/biological subtypes can be found and only some of them will be cureable, but then it will still effect everyone with that subtype): if a cure is available, people who need any support at all, will be pressured to seek a cure instead, no matter its implications for someone who may already be an adult and has lived their entire life with an autistic brain. It's a matter of money, yet these govt organizations that would give me the choice between a cure and no more disability benefits or long-term care, will not know about the effects a cure (that would essentially change my entire being) will have on me. (Of course no cure will be available in my lifetime, but it isn't like there will not be autistic adults or children with autism who could indeed add much to the world through their autistic strengths but who still have autistic weaknesses, once a cure will be available.) The govt agencies that might in the future pressure autistics to get cured, has to learn about the implications cure would have for people's personalities and indeed, the strengths that could be lost if autism were eradicated (I am not saying autism is all good, jsut that autistics, including profoundly disabled ones, may have certain strengths over NTs on certain aspects of cognition). You can say that Ari, or I, or any neurodiversity parent's autistic child, is not like your son, and you can present your son's autism as all bad and profoundly disabling with absolutely no good to add to his personality and still dramatic even with all accommodations int he world, but anecdotes make for bad science, and it is science that may be going to find a cure for autism.

farmwifetwo said...

"may have certain strengths over NTs on certain aspects of cognition)."

And this matters, since EVERYONE, NT or not, has different strengths or weaknesses.

And what good is it if someone has such strong mental delays, strong autism... that they receive those disability benefits and live in care.

Why is it "OK" for someone to live in that manner?? Why is it "OK" for someone to live at the mercy of the system?? Why is it "OK" for someone to be unable to travel, work, have a family of their own. Friends of they very own??

Then, why is it "OK" for society to have to pay to keep those with a disability if they can be "cured" enough to work.

Why is it "OK"... if you don't want a cure that's fine... but to condemn mine to a live in care... Is cruel and unnecessary. It's like putting a dog or cat into a shelter, in a small crate, and telling them it's for their own good b/c nobody else can look after them. I'd rather side with PETA than ASAN... and living on a farm I can tell you how much we dislike PETA.