Many in Autism Community Opposed Ari Ne'eman On National Council on Disability
Details on where/how to sign to follow once live.
Dear President Obama:
We the undersigned oppose the nomination of Ari Ne'eman to the National Council on Disability. Although we salute your effort to include a person with an autism spectrum disorder on the council, the choice of Mr. Ne'eman is wrong for the autism community and wrong for our country.
1) We are a nation in the throes of an autism epidemic, with 1 in 110 afflicted and hundreds of thousands of families struggling to confront the enormous financial and emotional hardships of this disorder. It is an insult to our community and to the people of this nation who will bear the enormous costs of millions of children and adults with autism that a 22-year-old student has been nominated to this position. Mr. President, how can you praise this nominee's "depth of experience" when he has not held a job, earned a degree or experienced life after college?
2) Mr. Ne'eman vehemently opposes curing autism, calling cure "offensive." However, many individuals who would benefit from a cure are incapable of disagreeing with him. Mr. President, will your appointees also recommend ending the search for cures for childhood cancer and diabetes? Or just autism? Mr. Ne'eman opposes the mission of the country's leading autism organization, Autism Speaks, which supports efforts to prevent and cure autism. He also opposes the depiction of autism as a crisis and does not address the very significant needs of the large population of individuals who are profoundly disabled by autism.
For a member of the National Council on Disability to not advocate for a cure on behalf of tens of thousands of people who suffer from disabling problems such as self injury, inability to speak, incontinence and dependence on others for their care - and who will cost society $3-5 million over a lifetime - is unconscionable. To fight against prevention and cure for such a serious disorder is inhumane and not representative of the majority in the autism community or the general population. Mr. Ne'eman's views are extremist.
3) Finite resources will not stretch far enough to support the large number of people now diagnosed with autism. Without making the goals of prevention and cure a top priority, there will not be sufficient funding to adequately provide for the growing population of people with autism, rendering Mr. Ne'eman's goal of providing better quality of life for those on the autism spectrum unachievable.
5) Rather than unifying the autism community, Mr. Ne'eman divides it. He equates the search for a cure with outright rejection of all autistic people. Mr. Ne'eman and a small faction within the autism community may personally oppose prevention and cure as is their right, but they do not represent the majority of people on the spectrum, particularly those who are so impaired that they face a lifetime in institutional settings at taxpayers' expense.
6) He erroneously claims the concept of recovery from autism is not scientifically supported. However, recovered individuals have been documented by medical science, and one university study puts the potential for recovery from autism at 10% (of children with autism). His denial of the possibility of recovery will impede efforts to improve the lives of people on the autism spectrum. Mr. Ne'eman, a very high-functioning individual whom Newsweek magazine described as a "master networker" and"fluent in policy-speak" does not require the interventions and treatments he disparages. He does not acknowledge the pain, isolation and life-threatening behaviors of our community's neediest individuals, nor their need for recovery or lessening of their associated medical problems and autistic behaviors.
7) The late Dr. Bernard Rimland challenged the prevailing "refrigerator mother" theory and replaced it with the theory that autism is a biological disorder. Despite Dr. Rimland’s important role in removing the burden of guilt from parents, Mr. Ne'eman now calls on the autism community to stop admiring Dr.Rimland and find new heroes. Among his contributions, Dr. Rimland championed vitamin B-6/magnesium therapy which has been conclusively shown to confer benefits to about half of all children and adults with autism who use it. Thousands have benefitted, but Ne'eman maligns Dr. Rimland and belittles his contributions. Mr. Ne’eman’s vilification of a great hero of the autism community is further evidence of his estrangement from the people he is meant to represent.
8) Mr. Ne'eman has obscured the harsh reality of autism with rhetoric. His littany of words - "paradigms, infrastructures, neurodiversity" - does not address the real life problems of people with autism, particularly those most profoundly impaired. Rhetoric and denial will not end the suffering. It will not provide futures for people with autism. And it will not prevent the next generation from being afflicted
I don't like Ari Ne'eman's being a spokesperson for people with autism and I cringe at the whole "self-advocacy" focus of our local ARC and Autism Speaks. Why? Because 75% of autistics are nonverbal or minimally verbal, and by being so eloquent and articulate he gives the public the wrong idea about the disabling nature of the disorder. He doesn't seem to need much help. I am not opposed to him so much as concerned that the public gets the wrong idea when every April, for autism awareness month, some seemingly normal guy goes on TV and talks about his "disability." Give me a break!! I know the reality of autism and it is awful, requiring a lifetime of care no family can afford.
Posted by: Emily Tuck | February 21, 2017 at 11:16 AM
I have autism and am part of the Regional Center where I live. The reason I say Autistic Self-Advocacy Network (ASAN) does not represent my views and those who do not choose to associate is because of their approaches. It’s not because everything they stand for is wrong it’s because they alienate really good ideas with very bad approaches. Using abortion politics to make demands toward tax-payers for services estranges the needs of real people and estranging compassion as pity in protests signs is just wrong. Caring people are called Nazi’s, their intents manipulated as if they meant harm and I just cannot ethically not speak against the propaganda because I think it’s wrong to warp others intention and everyone should be treated fairly.
ASAN needs to invent into the intentions of others so much to continue it’s PR game and it got them a nomination by a political party and this is not the first time an elected figure has done so. I am so tired of being expected to dumb myself down and go along for the ride as they manipulate what others say and to me it is a moderate amount of time farfetched as if I shouldn’t be expected to think as an independent self-advocate otherwise less I am and others detractors.
Everyone deserves respect and when disagreements happen I believe there should be a diverse conversation going on and not just a group who has used abortion politics to force their views representing the self-advocacy community. People in the middle who actually listen to both sides are not often in the media nor are they allowed to speak through the self-advocacy network known as ASAN because the views are dictated and it’s not a true self-advocacy network in the diverse sense.
Neurodiversity simply denotes a diversity exists. As a concept it does not dictate how each individual of a diversity shall think, believe and choose.
Humboldt County, CA
Posted by: Nathan Young | November 04, 2011 at 01:05 AM
I fully do NOT support this mans appointment.
Posted by: Sylvia | June 22, 2010 at 06:03 PM
Anon2's comment below shows how out of touch with reality Ari Ne'eman's movement is:
"if someone cannot speak for themselves, it is ludicrous to think that their parents can or should do it for them."
This article shows why Ne'eman is NOT equipped to speak for very disabled children and adults. Frightening. http://www.ageofautism.com/2010/04/neemans-dangerous-agenda-for-residential-housing-of-the-severely-disabled-in-new-jersey-.html#more
Posted by: enough lies | April 22, 2010 at 08:35 AM
*sigh*. They really hate us, dont they? I am so glad my parent were never like that. They never saw me as a damaged child, only a different/gifted child.
Posted by: celeste | April 11, 2010 at 04:40 PM
Ari is a brilliant advocate for the autistic community. Someone makes the point that Ari's views do not represent the views of most Americans. So what? He is an autistic person representing the views of many autistic people like myself who are fed up of being portrayed as ill, in need of 'cure', disruptive, tragic, dangerous and a burden to those around us.
We need support to overcome our challenges and difficulties and acceptance and understanding.
Autism is part of who we are. People who want to 'cure' us are essentially saying they want to delete us and replace us with nice 'normal' children that they will find it easier to love.
Ari represents the views of a significant proportion of autistic individuals. Someone said he cannot represent those who cannot speak for themselves. Actually, ASAN involves people who use alternative communication and also if someone cannot speak for themselves, it is ludicrous to think that their parents can or should do it for them.
I have worked with people with "severe" autism and believe me, if you open your eyes to the fact that communication comes in may forms, you will see that these people can tell you whether or not they are happy and whether or not they want to change. I have yet to meet someone who is miserable with their life purely because they are autistic. This is something parents and society project as they make the arrogant assumption that unless you are like the majority, your life is pointless and miserable.
Ultimately, only an autistic person can say if they want to be 'cured' or not. It is not the place of a parent or anyone else.
It is also important to bear in mind that challenging behaviours and wishes to be 'different' may well be the result of the fact that we live in a world that is not accessible to people who are autistic. Things like a better attitude in society, access to alternative communication, genuine equality for all disabled people and and end to judging people purely by their 'economic viability' or how 'neuro typical' they seem is the only thing that will make a difference.
This is why I support Ari 100% and believe that he is the right choice for this.
Only an autistic person can truly even begin to represent autistics. Neuro-typicals cannot do this. They don't 'live' autism so cannot fully understand it. The fact that a majority of Neuro-typicals may or may not oppose Ari is irrelevant. This is a National Council for Disability, not a council for people who are disablist.
Posted by: Anon2 | April 11, 2010 at 09:57 AM
The petition is now live. Please sign it at the link below, and ask your friends and family members (including spouse) to also sign.
You can create an e-mail with the link to send to your personal contacts, asking them to sign the petition and forward the e-mail to others.
Posted by: The petition is up! | April 03, 2010 at 07:18 PM
Ari Neeman is way out on the fringe. He seeks to deny the help to millions of others that research could provide. He should not be given a platform from which he can spread his nonsense. He also must not be allowed to intefere in the good work of others. As has been stated, he has never held a job and has not completed college. I will add that he likely has had few friends. He is not the spokesman for anyone. Ari Neeman should get a job and support himself.
Posted by: Josh | April 03, 2010 at 01:21 PM
Ylanne said, "we believe that your opinion that autism should be cured or prevented is perfectly valid and reasonable. You, on the other hand, do not accept that our opinion is valid and reasonable." My understanding is that Ari has been quite vitriolic towards people who believe in vaccine causation and biomedical treatments for autism. If he simply advocated for HFA's rights to express themselves and be accepted/understood as they are, there would not be so much controversy. He seems to have become a bit more tactful recently, but perhaps simply because it's political to do so, i.e. necessary to get ahead.
Posted by: Twyla | April 02, 2010 at 02:03 AM
If Ari Ne'eman's position on cure was the only issue being questioned, there would only be one item on the petition. But there are eight.
It doesn't matter how "respectful" you are about how you express your views. They are still extremist. Respectfulness and extremism are not mutually exclusive.
Ylanne, no one is telling you not to speak. They're saying Ari Ne'eman doesn't and shouldn't speak for them, and that's their right. This is a democracy.
Posted by: to Ylanne | April 02, 2010 at 12:17 AM
Person who didn't leave an actual name, just "to Ylanne":
I did read the petition. Most of my comments were addressing other comments.
The point is not whether or not he believes a cure for autism is necessary or unnecessary - the committee to which he has been nominated is a committee responsible for advocacy, development of policy, and advice concerning disabilities - his appointment to this committee would not affect the organizations that do support finding a cure for autism. His appointment would provide a voice for people on the spectrum in a place where they have never had that opportunity.
Just because some autistics cannot speak does not mean the rest of us should not. Just because Ari has a so-called extremist position on the idea of a 'cure' does not mean he should not be allowed to share his insight on other autism-related issues. The NCD does not appropriate funds to organizations or research of any kind.
Directly from it's own website: "The purpose of NCD is to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, and that empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society."
This is precisely the sort of advocacy and policy work that Ari Ne'eman excels at, and he should be permitted to actively espouse better services and treatments for those on the spectrum, whether 'low-functioning' or 'high-functioning'. This is NOT about whether or not autism should be cured. You, and many others on this site, take huge issue with that ONE, that ONE so-called 'extremist opinion', and decide on the basis of ONE issue that he is untrustworthy and unreliable.
I hope you don't vote that way during elections, too. A person should be judged by his character, not by his opinion on any one issue. And Ari Ne'eman has been and is consistently dedicated toward autism awareness, development of more effective treatments and services for autistics, and advocating for autism. Aren't these things you support too?
(Note: 'you' in the following paragraph is a generalized you.)
You call us extremist. You are the one taking an extremist position - we believe that your opinion that autism should be cured or prevented is perfectly valid and reasonable. You, on the other hand, do not accept that our opinion is valid and reasonable. You say that if we oppose a cure, then we obviously must not care about or understand the problems of autistics. You say that if we oppose a cure, then we are extremists who must be dangerously linked with the pharmaceutical corporations.
Is there no such thing as pleasant disagreement anymore? This is not a situation requiring the same type of justified intolerance of things like Nazism and Qutbism (Usama bin Ladin's philosophy). This is a situation where even though we have put forth our positions in a respectful manner, citing the validity of your position (though we disagree with it, naturally), YOU decide that we are extremists and our opinions lacking any form of validity whatsoever. Does anyone else see the hypocrisy with that?
Ari Ne'eman is a good man with good character and good intentions, and on this council, he could do only good. The NCD does not deal with 'cure' issues. It deals with advocacy issues, and this is where Ari excels. So let him excel.
Posted by: Ylanne S. | March 31, 2010 at 12:17 PM
You need to read the petition. You wrote:
"Ari does NOT deny that severely autistic people need help, and should receive it."
The petition does not claim otherwise.
"He does understand that the severely autistic - like the mildly autistic - face challenges different from typicals, and that they DO need help, and that we, the community at large, should be taking action to benefit these people."
The petition does not claim otherwise.
"He simply believes that a 'cure' for autism is the wrong approach toward helping autistics."
This view is extremist and not representative of the majority of Americans.
"He and ASAN do NOT believe that all non-psychiatric treatments for autism are wrong or ineffective."
The petition made no statement about all non-psychiatric treatments for autism.
"I fully support Ari's nomination, and I believe that if you took the time to really listen to what we have to say, you would understand that we DO understand and care about the problems of the severely autistic."
As long as Ari Ne'eman believes autism should not be cured or prevented, it matters little how understanding and caring he claims to be about their problems.
Posted by: to Ylanne | March 30, 2010 at 11:32 PM
He stated in his letter to you that he was asked not to make any further public appearance until the confirmation process was complete. Being on the spectrum, he probably took every word of that letter to an extreme literal and will do everything to avoid violating that restriction, no matter how much he might want to respond with his own clarification.
Posted by: Ylanne S. | March 30, 2010 at 04:50 PM
The community invited him to clarify his position. He declined.
Posted by: Anon | March 29, 2010 at 01:37 PM
I am a member of ASAN and a supporter of Ari Ne'eman. You are twisting his statements out of context in order to create baseless assumptions and a slippery slope argument.
Ari does NOT deny that severely autistic people need help, and should receive it. He does understand that the severely autistic - like the mildly autistic - face challenges different from typicals, and that they DO need help, and that we, the community at large, should be taking action to benefit these people. He simply believes that a 'cure' for autism is the wrong approach toward helping autistics.
He and ASAN do NOT believe that all non-psychiatric treatments for autism are wrong or ineffective. I personally, as an Asperger's autistic member of ASAN, do not believe in psychiatric treatment and medications for the majority of autistic people.
I fully support Ari's nomination, and I believe that if you took the time to really listen to what we have to say, you would understand that we DO understand and care about the problems of the severely autistic.
Posted by: Ylanne S. | March 29, 2010 at 01:32 PM
It seems you've won a victory on this subject because the nomination has been held up. For shame.
Posted by: Kevin | March 28, 2010 at 12:23 PM
I'm looking forward to Mr. Ne'eman being on the Council.
Posted by: RethinkingAutism | March 19, 2010 at 12:02 AM
It was approved by Committee, but still has to go to Senate for approval.
Hopefully, this petition will do something to raise an eyebrow, but I doubt it. We'll need to do an action campaign to our representatives.
Posted by: Kevin | March 18, 2010 at 02:18 AM
This is an orchestrated game of chess and we are the pawns...Our families' lives pawned off so Big Pharma King can continue to rule the chessboard. The vaccine industry puts all of the Queens and Bishops and Knights into place so that they can control the game.
Ari Ne'eman will be set on the board and do his dirty work unless we can somehow prevent him. SIGN ME UP TO OBJECT.
Posted by: Autism Grandma | March 18, 2010 at 01:17 AM
This guy's nomination and attached controversy has been around for months. Someone CHECK ME ON this, but I think I read he was approved in a block of nominees that Obama put forth, just last week.
Posted by: DSO | March 17, 2010 at 10:04 PM
Where do we sign-- or has this already been signed and circulated?
Ne'eman is frightening. He reminds me of Arfie in Catch 22-- imperturbable craziness. Not saying he rapes anyone and throws them out a window and gets away with it, at least not literally. But figuratively?
Posted by: Gatogorra | March 17, 2010 at 12:01 PM
Ok, now this makes me angry - what the bleep is going on with this nomination? I smell Big Pharma and other special interest ties.
Is there more we can do to share our views and non-support of this ridiculous nomination?
Posted by: Andrea | March 17, 2010 at 11:53 AM
Not sure where I can sign this petition either. You forgot to mention Ne'eman's simplistic solutions to autistic unemployment such as eliminating social unpleasantry as a criteria for hiring. I will sign an online petition also, if you let me know where it is. But I guess it was just a figurative "we the undersigned"
Posted by: Jonathan | March 17, 2010 at 07:05 AM
Fantastic! Where do I sign?
Posted by: Natasa | March 16, 2010 at 09:26 PM
I just briefly read this post. It seems like something is cut out at the end?
Posted by: JenB | March 16, 2010 at 09:17 PM