Keeping Autism Neurodiversity Out of the White House
By Jake Crosby
Many readers at Age of Autism have a good idea of what Neurodiversity is. For those who don’t, however, it’s an ideology that states that autism is merely “diversity” rather than a disorder that should be treated, cured or prevented. Followers of this viewpoint do not see autism as a disability, at least not according to the standard meaning of the word. This is a viewpoint that would not sync up with a lot of people’s in the autism community, yet within the past year, followers of this belief have gained significant coverage from Good Morning America on ABC, Newsweek, TIME, and New York Magazine. Unfortunately, their influence on the media and press is also spilling into government. It began with them testifying for the IACC. Now they are becoming a part of federal government.
I have recently heard from my friend Jonathan Mitchell, an adult with high-functioning autism, that neurodiversity advocate and founder of the Autistic Self-Advocacy Network, Ari Ne’eman, has been nominated to the National Council on Disability. Jonathan has played a very important role in my coverage of Neurodiversity on AoA, having previously alerted me to the article Newsweek was running about Ne’eman.
That, however, was miniscule compared to this. Jonathan has just alerted me to a link from the pro-Autism blog, Leftbrain/Rightbrain, which links directly to the white house website. (HERE)
On that website, a press release entitled, President Obama Announces More Key Administration Posts, 12/16/09, names a list of 10 nominees for positions in his administration. Second from the bottom is Ari Ne’eman. After the list is a quote from President Obama: “I am grateful that these fine individuals have chosen to serve in my administration. They will bring a depth of experience and valued perspective to their roles, and I look forward to working with them in the months and years ahead.”
Well President Obama, this “fine individual,” Ari Ne’eman, who you are nominating to a position on a disability council, was quoted as indicating that autism is not a disability. In an essay he wrote about autism, Ari concludes by saying, “Difference is not disability.” Furthermore, he told Newsweek that autism is not a medical mystery that needs solving, he said on Good Morning America last year that being anti-cure is not anti-progress, speaking above a superimposed caption that read, “There’s nothing wrong with us! Autistic and proud!”
Not only does he impose his views onto others based on his limited experience, but even on no experience. Ari Ne’eman has made comments about employment, speaking before the Equal Employment Opportunity Commission, despite having no work experience of his own whatsoever. (This was confirmed in an email from him to Jonathan Mitchell.) Ari stated that social pleasantry should be eliminated from the workplace. As a person with an autism spectrum disorder who has job experience and suffered as a result of having a very abusive boss, I take great objection to what he said, given his non-existent work experience.
Is this the kind of person we want serving in the new presidential administration? Do we want him on a council on disability policy when he does not even see autism as a disability, at least not in the classic sense of the word?
It is very possible that Ari Ne’eman’s involvement with the government is related to family ties. His mother, Rina Ne’eman, was Hebrew translator for former Israeli Prime Minister Ariel Sharon. So it should not be surprising that such a connection would lead to Ari having a foothold in our government.
This should not justify someone with views that simply do not represent the autism community, and most of all, do not represent the majority view of other people on the autism spectrum such as myself, serving in a position representing the autism community. His lack of work experience combined with a set of beliefs that he will readily apply to others based on his own self-identity that he has crafted for himself makes him completely ineligible for this government position. He should not under any circumstance be appointed to the National Council on Disability. The amount of undue attention he receives from a media and press that is seemingly blind to those on the spectrum with oppositional views is unacceptable as it is.
Jonathan Mitchell, who is as discontented with this nomination as I am, has left a message at the White House to President Obama voicing his disapproval. With Ari already being nominated, it seems like a moot point. However, nominations into the administration, at least according to Jonathan, have to be confirmed by the Senate. I feel it is essential for everyone to contact their senators to voice disapproval and ask them to reject this nomination outright. Everyone - parents, siblings, people on the spectrum - should get involved and protest the addition of Ari Ne’eman to the National Council on Disability. Tell your senators that he does not represent us and that they should reject his nomination!
Jake Crosby is a history student with Asperger Syndrome at Brandeis University and a contributing editor to Age of Autism.
Explains a few things? Sorry, but we are all in this together. Me too.
Posted by: Blackheath Paul. | April 11, 2010 at 01:05 PM
Lots of specialists state that personal loans aid people to live the way they want, just because they can feel free to buy necessary stuff. Moreover, different banks give bank loan for different persons.
Posted by: AlissaKennedy20 | March 11, 2010 at 03:26 AM
Wow, I never thought of it that way. The kind of Neuro"diversity" Ari and friends are peddling is anything but, because of their lack of acknowledgment for the full range of the autism spectrum. Great post.
Speaking of which, he just wrote a new article for the Disability Studies Quarterly, the one he was probably referring to in his no-response email to John Gilmore.
Just so you have an idea of what to expect, he smears Bernie Rimland, yet expects the organization he co-founded to publish this trashy article:
Posted by: Jake Crosby | February 23, 2010 at 10:43 PM
Neurodiversity? I don’t see it in the Ari Ne’eman crowd. At least not until they openly acknowledge people like my son and stop pretending autistic persons like him, don't exist. My videos on you tube of my severely autistic son who suffers from self injurious behaviors have been obsessively attacked by some in the neurodiversity movement. Like children having a tantrum, they repeatedly give thumbs down to anyone who applauds me for showing real sides of real severe autism. This is very telling. This shows these alleged advocates for autism are probably not autistic. Consider Rain Man, could U imagine this sweet guy (based on real life person) trolling you tube and attacking a mother like me who has been through hell trying to help my son? It wouldn’t even occur to him, or even Temple Grandin, who has severe Aspergers, to act like or do this. But so called “auties” and “aspies” who hate my guts now, are on a rampage to villify me and downplay my son’s condition because it threatens to expose their narrow driven movement that FAILS or willfully ignores autistic peole like my darling son. Please go to you tube and see the video “autism epidemic out of control.” Many of my friends and family members are helping me spread word about this because it is really scary that such hate, intolerance and outright mean spirited attacks would come against me and my son or anyone else who is dealing with serious issues like self injury. We just want to be included. Why such prejudice against us from the neodiversity crowd? Why such hate? Mockery? It is simply unreal that these neurodiversity fanatics are even posting things on “wrong planet” (a good site) like “the mother must feel guilty” or she’s got munchasen by proxy, or “she’s whacked.” This is often funny to me, actually, as I gather their comments and really look at the kind of spirit they have. It is not one of helping people like my son. It is not empathetic. Nor considerate. Nor of love. They are driven by a spirit of self-preservation. They have an agenda. They’ve fooled a lot of people. And cases like my son are driving them crazy. So, they want to shred us. Shut me up. It won’t work. In fact, it will work against them. Some, however, in the neurodiversity movement are really kind, honest and open minded people who have Aspergers and actually acknowledge my son’s severe autism and support us, and for that I am grateful. I wish they could all be so honest and kind. I have a close relative with Aspergers and he in no way would ever downplay my son’s autism or attack it because it made him look bad. Is it too much to ask that my son's severe autism self injury and seizure challenges are discussed in neurodiversity circles? Why such prejudice against his type of autism? Why downplay it as it he isn't part of neurodiversity? I think my son's case baffles and infuriates some neurodiversity folks because when you see him slamming his fists into his head, clearly, this isn't an autistic person you'd say "to just accept as he is." Well, the truth is, I accept my son's autism. But that doesn't remove the fact that his self injurious behaviors, which are deeply rooted in the autism, can be ignored or 'celebrated'. This is serious stuff and for a neurodiversity movement to willfully ignore this autsitic population is unethical and shows extreme prejudice. Severe to profound autism is real and must be acknowledged if you claim to really care about autism advocacy. I'm not the type of mom who blames vaccines, by the way. I'm probably baffling to the neurodiversity movement because I share some of their beliefs, but I also am very vocal about how serious self injury is within the more severe sides of autism. They just can't figure me out. So, sadly, some attack me.
Posted by: jameysmom | February 23, 2010 at 12:58 PM
I am not misinformed. Ari's quote about autism not being a disability is from his group's own website.
I cannot tell you how many people I've heard use Ari's involvement with the ADA in order to deflect criticism from what he has said, but I don't by it for a second.
First of all, he did not "work" to pass the bill, but rather was named was among "additional countless individuals who helped
with educating Members of Congress, doing
important coalition and media work, and
providing legal input on the bill as it progressed
through Congress." So he had some vague involvement, especially given that he was buried towards the bottom of a huge laundry-list of names. And he was merely named by the House to avoid "the risk of leaving out some individuals."
You give him too much credit.
Secondly, the fact that the ADA bill included the word "disabilities" does nothing to change Ari's view. He has testified before the IACC, a committee formed out of the Combating Autism Act, which he vigorously opposed prior to its passing. He said that Autism Speaks was complicit in murder because of Allison Singer's statement about driving her daughter off the George Washington Bridge. He also opposed the stigmatizing ransom notes ad campaign of the NYU Child Study Center, founded by Dr. Harold Koplewicz. Yet, he'll then turn around and eat sandwiches with these people, the very people who he previously accused of murder complicity and protested against.
So just because he had some remote involvement with the American with Disabilities Act, does not mean he believed autism was a disability.
You also rehashed the altered text on the ASAN website:
"Difference is not, in itself, disability; it becomes disability when it is not properly understood and accommodated."
As recently as last summer, it merely said:
"Difference is not disability." period, what difference do you think he was referring to? Autism, obviously, that's what the essay was about.
You claim he retracted this immediately after, but in fact he is not retracting it, he is claiming to have never said autism isn't a disability, and therefore not owning up to his words.
His denial was far from immediate either. It only began after it was officially announced that he was nominated to the National Council on Disability, that's when he started to rewrite his own words. Such opportunism and lack of accountability on his part only lessens my confidence in him as a nominee to Obama's administration.
And as for my statement about Ari's mother having something to do with his nomination, of course it's just speculation, worthy speculation. I did not even say it was the basis, but I did say it was possibly related. When someone who has been nominated to a presidential administrative position is the son or daughter of a parent who has worked directly for multiple heads-of-state, it makes the legitimacy and fairness of their nomination questionable at best. Ari Ne'eman is no exception.
Posted by: Jake Crosby | January 11, 2010 at 01:32 AM
I would like to clear some things up - the author of this article is clearly misinformed and I hope those of you who read this article are finding your information from other sources as well.
Mr. Ne'eman actually worked to pass the ADA Amendments Act, to be sure Autism would be considered a disability. That should clear up the misconception that he thinks Autism is not a disability. If it doesn't, spend five minutes on the ASAN site and anyone can see that this is clearly a misconception.
He made the following statement in an article:
"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."
And almost immediately afterwards, he retracted, because although the statement does not say "Autism is not a disability", people were taking it as such.
I think the base of Mr. Ne'eman's argument, and others who agree comes from the statement 'nothing about us, without us'
I sympathize with the viewpoints on this page- but have to wonder how many contributing have Autism? I am sure most are parents and families- but given the right tools, and the opportunity- your child who is on the Autism spectrum can speak for themselves.
To say that Mr. Ne'eman's appointment is based on his mother being a translator is purely speculation. Plenty of us see where we are going in what our parents are doing- simply because he followed in his mothers political footsteps does not mean he was not fairly chosen for office. I am not saying this is impossible- I would just like to see a little bit more to back that statement up.
Furthermore, Bravo to President Obama for nominating Ne’eman to the National Council on Disability. New Jersey should be proud of producing an advocate for people with disabilities who has become a national leader at the young age of twenty¬-two.
Mr. Ne'eman has already made an impact in promoting the interests of individuals across the Autism Spectrum, be it in employment, access to Augmentative and Alternative Communication (ACC) Devices for those who are non-verbal, fighting against abusive restraint and exclusion in schools, or in assuring that all individuals on the Autism Spectrum are safe from care-giver abuse and have access to community based supports. His work promoting legislation such as the Community Choice Act and in supporting the expansion of the cross-disability community helps all underserved and devalued populations fight prejudice and give back to their communities.
As an activist organization founded by and for people who have disabilities, Next Step, Incorporated as People with Disabilities for Social and Economic Justice, is proud that Mr. Ne’eman will be speaking for Americans with disabilities as a member of such an influential organization. We believe that people with disabilities and their interests are best represented by people with disabilities themselves. We look forward to his confirmation by the U.S. Senate, as well as all the work he will do on the National Council on Disability.
Posted by: [email protected] | January 06, 2010 at 10:50 AM
It's one thing to want accommodation and acceptance. That's what I want, I don't want pity. However, it is a whole other thing to say you are not disabled, which is essentially what Ari has said.
Do we need someone appointed to a national council on disability who does not even think autism is a disability to fight against discrimination against us? Of course not, and I seriously hope you see just how ridiculous your defense of Ari Ne'eman's nomination is.
Posted by: Jake Crosby | December 22, 2009 at 09:06 AM
"Oh really? So then I don't count? What about Stephanie Lynn Keil who has commented on this thread? She doesn't count either? Or Roger Kulp? Or Jonathan Mitchell who was featured in this article and has been fighting to get on SSDI for a long time now? I don't think you realize the magnitude of offensiveness being emitted from your statement!"
I am mearly referring to the idea of people as far back as the 80's looking to change the focus of language for people who were formerly called crippled or handicapped wanting the idea of disability rethought from that of pity to that of accomodation and acceptance. In my view, it's what the foundation on which AWDA and IDEA are built on upon. If you think I'm misrepresenting the mindset of those in the disability 'community', I'm sorry. I'm not disabled myself, I'm just advocate for my two daughters who are.
Neurological disorders and mental health issues are one of the last great areas of prejudice, discrimination and irrational fear in society. I hope that someday, they are treated the same way as other disablities. Sorry for the PSA, but a new organization has begun to take this charge up, called Bring Change 2 Mind:
They are not autism related but, although many might disagree, the ideas should be a major part of the autism advocacy debates...
Posted by: livsparents | December 21, 2009 at 11:47 PM
Jake: When neurodiversitites say we are making it up that they said autism is not a disability, they are talking about the social model of disability, that society causes disability rather than the medical model in at least many cases. Of course I won't speak for everyone who believes in the ND philosophy as there may be some who do believe at least to an extent that autism could be a medical disability. Ari Ne'eman it would seem is not in the latter category even if you include the rewording of his essay from the original.
Liv's parents: Ari Ne'eman has never had paid employment of any kind, so he is certainly not qualified to talk about employment issues. As far as having an autistic person represent us. This again is the neurodiversity fallacy that all autism is equal, stating that Ari is just the same as Noah Greenfeld or Dov Shestack. This is certainly not true.
Posted by: Jonathan | December 20, 2009 at 12:24 PM
Your comments are better at showing how detached from reality you are then anything I could say about them. Let's begin with the first of such quotes:
"I don't see Ari's 'drastic' rewording as some kind of grand conspiratorial viewpoint coverup."
Look what he has said! He said he never said autism was not a disability, that in itself is untrue!
Now look what was said before the revision on ASAN's website:
"Difference is not disability"
Pretty definitive, don't you think?
"Difference is not, in itself, disability; it becomes disability when it is not properly understood and accommodated."
"in itself" - Giving himself some wiggle room to prepare for the addition of words that's about to come next.
"it becomes disability when it is not properly understood and accommodated."
Hmmm, that's odd. First he says it's not a disability, end of story. Now it seems he's saying it CAN be a disability, only in a way that diverges from the term, and right around the time he is being appointed to a National Disability Council no less.
He also has his terminology on disability wrong. A disability is the way an impairment affects an individual's ability to function. It appears what Ari is referring to when he denies saying autism is a disability sounds more like a participation restriction, whereby it can be affected by social policy as well. I know because I just got finished taking a course on disability.
"if you excluded all who considered themselves diferently-abled rather than disabled, you'd have a rather empty room in a disability rights convention."
Oh really? So then I don't count? What about Stephanie Lynn Keil who has commented on this thread? She doesn't count either? Or Roger Kulp? Or Jonathan Mitchell who was featured in this article and has been fighting to get on SSDI for a long time now? I don't think you realize the magnitude of offensiveness being emitted from your statement!
"it's better to have someone on the spectrum on the council you have disagreements with than no one there representing autism.."
As a person with an autism spectrum disorder, I personally believe it's better to have no one representing me than a faux representative, but that's just me...
Posted by: Jake Crosby | December 20, 2009 at 08:15 AM
I'm sorry guys, but I don't see Ari's 'drastic' rewording as some kind of grand conspiratorial viewpoint coverup. Fact of the matter is if you excluded all who considered themselves diferently-abled rather than disabled, you'd have a rather empty room in a disability rights convention.
If you all would rather that a disability council be focused on research and prevetion, good luck with that. I'd rather they focus on fair employment and working condition practices, discrimination issues, and funding for group housing projects instead.
The next time the disability council affects vaccine or medical services policy, you let me know...good luck with that protest campaign to keep Ari off the council...but remember, it's better to have someone on the spectrum on the council you have disagreements with than no one there representing autism...
Posted by: livsparents | December 20, 2009 at 12:19 AM
"...Obviously, the president and his advisors reviewed his experience and thought him worthy of the post..."
Oh, come ON. The president did not review anything himself. Gimme a break. You really think he went through some Supreme Court Justice interrogation? He didn't even write his own comment to the AP about it. You say the name "Ari Ne'eman" to Obama and you think he knows who that is? That's hilarious.
Posted by: Jessica | December 19, 2009 at 08:27 PM
Livsparents said, "I'm sorry, but dragging cure discussions into this is irrelevent, this is about disability rights." Livsparents, the rights of people with disabilities includes the right to appropriate medical treatment, which unfortunately is extremely rare for many with autism. In addition, if we continue to add more and vaccines thereby creating more and more people with autism -- much of them not able to grow into self sufficient adults, resources will be extremely strained, impacting services for everyone.
Gatogorra as always makes great comments, and to carry one of her comparisons a bit further, it appears that Ari will be like the proverbial "house negro" as described by Malcolm X -- the member of a group who is more likely to support existing power structures. Even though he pictures himself as fighting for rights, he is actually supporting the outdated paradigm that is keeping people down, the paradigm that justifies no change, no action.
Posted by: Twyla | December 19, 2009 at 05:36 PM
Thanks for bringing this up. I don't always know what's going on when it comes to the neurodiversity movement as I am busy with advocating and educating people on the many medical issues of autism.
I highly doubt Ne'eman will be doing that as
Gatogorra has pointed out so well. His associations and pals paint a picture of denial and adversarial actions regarding the ill of autism, mostly as those pals seem connected to the denial of vaccines ie.. to the pharmaceutical industry and all that touches. He is a marionette with many strings.
",,,,he rubs elbows with the very organizations which seek forced institutionalization and drugging of the "mentally unfit" (drug front group NAMI), individuals who characterize autism as a druggable scourge (Harold Koplewizc of the NYU Child Study Center, author of the "ransom" campaign and now science advisor to Alison Singer's Autism Science Foundation) and the UK's pundit/researcher Michael Fitzpatrick's (who theorizes that Hitler had Asperger's)." "...he pals around with the likes of Offit and Novella",,,," he's in this position because he parrots back the message that industry wants; he knows what's expected of him."
Posted by: Teresa Conrick | December 19, 2009 at 05:12 PM
Thanks for alerting us to this, this is horrible, and we all need to write our elected officials..and I belive taking the time to WRITE and MAIL a letter via snail mail would be a good option and then a follow up by email....I think emails are just too easy to 'delete' or get lost in spam/deleted by assistants/get an auto reply/etc....
Also, I am only about half way thru the comments and I had to post now before I got distracted (kids are distracted by playing with Daddy so I have a few seconds to chime in before the time and the thoughts leave me..)...
I belive that this council should be BALANCED, sure, ALL sides of matter should be fairly covered and all sides should be able to have a 'voice'...however, those that are in the "ND" movement who are posting here are forgetting 2 major things:
1. Ari has repeatedly said that Autism is NOT A DISABILITY...how can he now explain he is 'their voice' on a panel/council for DISABILITIES when he thinks its not even a DISABILITY? Pretty major thing if you ask me...
2. Isnt it the POINT of any sort of 'council' to have people who have been shown to be able to keep thier voice heard withOUT offending the other voices on the council? Shouldnt a council have people with varying opinions/believes that can ACTUALLY also have an OPEN mind to be able to discuss and to compromise so that ALL sides are covered? This guy surely doenst even have the capability to COMPROMISE, or at the very least has no history of RESPECTING an opinion that isnt 100% in agreement with his...WRONG WRONG WRONG....
Now, I can see what some might say in response to that last comment...I am sure some are thinking "WEll, how can you compromise when you feel your opinon, your 'evidence' shows one thing, and the 'other party' shows another? dont you want to fight for your voice/opinion?"
Yes, of course, but there are many other people who could do so withOUT disrespecting the other voices..its about COMMON sense and COMMON courtesy..and Ari, by his own words and actions have prooven he can NOT do that...yet he has now been nominated (who votes/makes it official anyway? Just the pres, or is it a group? these are who we should send our facts/opinions/thoughts to)....he has been nominated to a council who is supposed to WORK TOGETHER RESPECTFULLY to come up with reccomendations that are good for all 'sides', its a shame if he gets this position....shame...not only for our kids/families/adults with Autism, but for the whole "ND" movement themselves, because his extreme-ism has been SO disrespectful to others 'sides' its only going to shoot the ND movement in the foot....
Well maybe in the short term this will be good for the ND's..but in the long run maybe its good news for our families/kids/adults with Autism..maybe his nasty-ness will be our gain....
Mom to Ethan, Alex, and Megan
Posted by: Angie | December 19, 2009 at 03:51 PM
You just completely neglected the fact that Ari Ne'eman has said autism is not a disability. That is central, he has been nominated to a national disability council. He then essentially tried to rewrite history by claiming he never made such a statement. That is a lie. It also appears that the ASAN website has tweaked the wording of the quoted essay, "Difference Is Not A Disease:"
What it said before:
"We should recognize what diversity of neurology has contributed to the human race and what it can bring to the future. Difference is not disability and someday, I hope, the world will recognize that those who think in different ways should be welcomed."
What it says now:
"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."
We can argue all day about which issues should be included in the discussion on a disability rights panel, but in the end, we have someone appointed to a disability council who has said that autism is not a disability, and is now in full-flung denial mode.
Posted by: Jake Crosby | December 19, 2009 at 02:02 PM
I think neither Ari nor AoA can stake a claim as representing all or even most of those in the autism community, but to classify his work and organization as "utter lack of representation for the autism community", you and I have different viewpoints of advocating for the disabled. If you also think that a primary objective for a disability rights organization should be advocating for medical research into causations, then we again have a difference of opinion of what a council on disability should be focused on.
If you'd like to argue experience and what area of the spectrum Ari's focus will be, those are valid points of contention worthy of discussion. But tying disability rights to a specific group's causational beliefs is just not one of them.
Obviously, the president and his advisors reviewed his experience and thought him worthy of the post, despite his outspoken views on the subject matter that you consider to be central.
Posted by: livsparents | December 19, 2009 at 01:12 PM
"He'll settle for being the token aspie that Thomas Insel will get on an elevator with,"
Gatagorra - that is priceless! Great comments as always!
Posted by: Sylvia | December 19, 2009 at 12:58 PM
You've got it totally wrong, Ari does NOT believe that autism is disability and was quoted as such in the past. It now appears he is running away from his own words to save face, and you are spinning it to make it look like he does when he doesn't.
I totally support neurological disabity representation on the council, so you are only arguing with yourself when you say that, and unlike Ari, I acknowledge that ASDs are disabilities. Your spin does not change that fact.
Ari Ne'eman, aside from the beliefs he espouses and utter lack of representation he would be for the autism community, was an intern in Congress. Great, so let's appoint him to a national council now. No company would appoint an intern not even out of college yet to a position on the board of directors and the same should go for our government.
And no matter how much you see disability rights as a seperate issue from cures, the fact is, it all goes together in the end. It's all part of disability rights, especially with our disability system now being flooded with new clients. And we should not abandon a cure because the "mainstream" isn't pursuing one properly.
The bottom line is that Ari Ne'eman is my age, not out of college yet, holds views that do not represent our community and neglects all the critical issues I've named above. We should not have someone like that representing us in the Presidential Administration.
Posted by: Jake Crosby | December 19, 2009 at 10:25 AM
Now that you have cleared up the idea that Ari does indeed consider ASD a disability, perhaps you and your readers can explain to me why neurological disabilities should not be represented on a disability council?
I guess that many here would like to argue that people who can speak for themselves should not be considered 'disabled' because there are so many others on the spectrum who are worse off. There will always be others worse off than our own; but that does not mean they should be ignored.
Personally, I see discrimination based on mental health issues to be one of the greatest threats to our kids' futures.
If you don't feel that Ari has the personal experience to fully understand the needs of the adult autism community, that's a valid point. But I would submit that Ari does have the political experience, which is probably a more relevent skill in these positions.
I'm sorry, but dragging cure discussions into this is irrelevent, this is about disability rights. Besides, cures in the mainstream mind will likely be either generic, one size fits all, therapies for all on the spectrum regardless of the individuals issues; or worse...drugging our kids into 'submission'.
Posted by: livsparents | December 19, 2009 at 08:57 AM
Ari Ne'eman has been sending around this message. I first saw it on Lisa Jo Rudy's blog, so I am repasting it here:
"I have never claimed autism is not a disability - in fact, I worked to pass the ADA Amendments Act, to ensure that it would be considered as such under the ADA. The claim that I or ASAN's advocates don't consider autism a disability is an unfortunate myth, which I'd appreciate if you could correct."
Fact is, he has clearly made such indications in the past multiple times, and now it appears he is changing his stance. Looks like Ari is circulating an unfortunate myth, about himself.
Posted by: Jake Crosby | December 19, 2009 at 07:46 AM
[email protected] When writing to representatives, be sure to point out the financial aspect of halting research for prevention considering the growing numbers of effected kids about to become adults on the public dole and the increasing numbers to follow which will eat through state budgets like a plague of locusts until it's eventually decided to start eroding human rights issues to warehouse the disabled more cheaply than ever. It's one of two points on which cold-fish Ne'eman will actually get ruffled.
what needs to be stressed over and over and over to public at large and politicians in particular, is that a huge majority of people with autism, INCLUDING Aspergers, high functioning whatever, will be unable to support themselves financially once they reach adulthood. A recent study in Europe showed that out of 100 adults with autism/Aspergers, only about 3-5 of them are able to live semi-independently and actually work for a living.
When faced with economic reality all this neurodiverse anti-cure bullshit falls flat on its nose.
First question Obama should ask Ne’eman is for ideas on financing (and justifying) state services for those looming millions of “NON-disabled” who will be requiring them.
If he believes that autism is not a devasting disorder, but a personality trait, how on earth can he justify and ADVISE on social support and state-funded services for it.
If a “cure” is ever found only those who are financially independent will be able to refuse it.
Posted by: Taxpayer | December 19, 2009 at 03:45 AM
Well, I saw my lawyer today - trying to get SSI. She was going over the last report of the psych guy that we and our insurance paid a pretty penny for - all four hours worth.
She said that the psych report said that my son was very fluid with change.
She wanted to know if my son is left handed and I said no he is right handed, she said well pysch said son has superior dexteritiy in his left hand????? What? I guess I should have let him use his right hand when he started school and then he could cut with scissors and cursive write - that been the problem all along????
This psych said my son could be an architect with his superior spacial skills. (Well shoot, I guess I will just pack him off to the nearest Univeristy and get that degree under his belt) - I pretty sure that I can go back about the end of the semester and scrap him off the side walk exactly where I dropped him off.
I was gettin worried, but then I remembered I read this article earlier and I felt a sense of relief.
My handsome neurodiverse guy can get him a job with the federal government. Yeah, he can get on one of the committees in one of them federal agencies alphebet soup thingeys. Problem solved. Health insurance, dental plan, even a drug plan to pay for his seizure medicines, and retirement plans. Thanks Jake because I was really down today.
Posted by: Benedetta | December 18, 2009 at 11:01 PM
Another fine piece of reporting by Jake Crosby. Thanks for bringing it to my attention. I'm writing to my senator now--thanks, Bonnie, for the template.
@jruch--if Ari doesn't think autism is a disability, then how can he work for "equal opportunity for all individuals with disabilities" where autism is concerned? When it comes to anti-discrimination legislation, I have more faith in a guy who wants to provide a wheelchair for a leg amputee, than I do in a guy who pretends he's just limb-diverse.
Posted by: Theresa O | December 18, 2009 at 08:47 PM
Ari Ne'eman states that the belief that vaccines causes autism is "pseudo-science" but believes that facilitated communication is valid.
Does he believe in science or not?
Posted by: Stephanie Lynn Keil | December 18, 2009 at 08:10 PM
It is very interesting that someone who is identified as at the forefront of neurodiversity would take a post in a disability commitee, when Jake clearly knows that the movement thinks the "Followers of this viewpoint do not see autism as a disability".
Can you explain to me what the 'standard' meaning of disability is?
Or perhaps maybe Jake and readers of AoA don't really have a good idea of what neurodiversity is all about...
Posted by: livsparents | December 18, 2009 at 05:24 PM
If autism isn't a disability, as he claims, then why the hell is he on the council anyway????? Ugh!
Posted by: Dana Read | December 18, 2009 at 05:06 PM
Ne'eman isn't in this position because of anything particularly special about him or hard work other than glad-handing capabilities which make him less likely to make public officials run screaming from elevators: he's in this position because he parrots back the message that industry wants; he knows what's expected of him.
The timing of this... Merry f'ing Christmas. It's funny about Ne'eman. In the end he's not going to get what his young, soluble candy heart desires: that the public will actually want their kids to have autism or think it's a great thing. He may succeed in having people assauge their non-disabled guilt by parroting pseudo-positive but still "otherizing" stereotypes ("oh, autistics are so good at math" ala "black people are so good at sports"). He will not achieve the kind of unilateral social acceptance for high functioning autistics that he dreams of.
But that's okay with Ne'eman, really. Ne'eman, when all is said and done, will settle for doing damage to those trying to recover their kids or prevent the disorder and getting some status for himself. It's a place to aim that undefined mercury rage. He'll settle for being the token aspie that Thomas Insel will get on an elevator with, the only one anyone invites to formal dinners-- as long as he doesn't bring any overly twitchy comrades along. And to hell with the low functioning: they're an embarrassment and inconvenient to his arguments. His support of the rights and treatment of severely disabled autistics will be symbolic and short-lived at best and just to open doors. It's a bit of a no-brainer: since he would not bend his rigid views to err on the side of caution to prevent the atrocious suffering that some severely damaged individuals will have to endure, he's clearly willing to let the majority burn for the minority to gain some status.
Ne'eman is a strange concoction of canny sociopath and ideologue at this point but the ideologue in him will fade pretty painlessly along with his stated agenda to seek better treatment of autistics. It's eroding already as he rubs elbows with the very organizations which seek forced institutionalization and drugging of the "mentally unfit" (drug front group NAMI), individuals who characterize autism as a druggable scourge (Harold Koplewizc of the NYU Child Study Center, author of the "ransom" campaign and now science advisor to Alison Singer's Autism Science Foundation) and the UK's pundit/researcher Michael Fitzpatrick's (who theorizes that Hitler had Asperger's).
Ne'eman will spout his "gay rights" and "civil rights" equivocations, comparing those trying to cure or prevent autism to those who would try to "reprogram" homosexuals or "white-ify" African Americans...while he pals around with the likes of Offit and Novella who sit beside the likes of former NIMH head Frederick Goodwin on the board of ACSH (Goodwin compared urban black men to "monkeys in the jungle" who just mate and kill and sought research dollars to "prove" a racial link to violent crime).
As long as these groups and individuals support the genes-only theory, fight against vaccine/autism research and against DAN treatments, Ne'eman will have truck with them and willingly play poster-child/human shield for the idea that autism isn't curable or preventable. His followers will forgive his strange bedfellows for a while, believing he will garner chits for self esteem and a "master race" identity for all, until they ultimately realize that they've been paying dues solely to benefit Ne'eman himself.
Ne'eman will continue to be Johnny-come-lately who jumps on board certain causes at the eleventh hour and then publically claims sole credit for any success brought about by activists who toiled for years before Ne'eman ever showed up to "write a couple of letters". He did this concerning bringing the restraint and seclusion issue to the GAO and he did this regarding Nate Tseglin's release from Fairview (never mind that Nate is now doing biomed). Whenever I see Ne'eman's glory-graspy claims, I want to ask where he was in all the years before these moments of success came about if all it ever took to resolve certain situations was to write his "magic letters".
When writing to representatives, be sure to point out the financial aspect of halting research for prevention considering the growing numbers of effected kids about to become adults on the public dole and the increasing numbers to follow which will eat through state budgets like a plague of locusts until it's eventually decided to start eroding human rights issues to warehouse the disabled more cheaply than ever. It's one of two points on which cold-fish Ne'eman will actually get ruffled. The other issue is psychiatric drugs. Ne'eman has a tendency to start hurling out accusations that pharma critics are "Scientologists" and repeating his favorite tagline excessively ("evidence-based science! Evidence-based science! Danger, danger Will Robinson!") if they discuss drug controversies or side effects too extensively. Some speculate that this is because Ne'eman depends on the drugs himself to keep his stitching and stuffing from coming undone.
Posted by: Gatogorra | December 18, 2009 at 05:04 PM
Absolutely revolting that Ari would consider a child or an adult who has chronic diarrhea, is still in diapers, is non-verbal, head bangs, bites themselves and others, spins and stims, and the list goes on and on, to be just different.
I find it difficult to believe that he's ever seen a child with autism, forget about believing that he himself has autism.
Our children are sick, and they need treatment.
He should be on the National Disabiity Council when hell freezes over, and not even then.
Posted by: Angela Warner | December 18, 2009 at 04:32 PM
there are many many intelligent people out there who are more than capable of advising the White House via NCD. We don't need extremist maniacs in there, with their twisted views and dangerous agendas.
Posted by: Taxpayer | December 18, 2009 at 04:10 PM
It is very possible that Ari Ne'eman was able to get the job because he chose to get out there and work towards getting it. What in the world is stopping you from getting the same opportunity?
Posted by: autism mom | December 18, 2009 at 04:00 PM
Thank you, Harold.
Parent, that is so true. Can you imagine if Jesus would have told the blind man to celebrate his "vision diversity"?
Posted by: Chris | December 18, 2009 at 02:21 PM
"Socrates" asking for a balanced debate? The CDC acknowledging that autism has now hit 1 in 110? And on the same day too. Will wonders never cease.
Posted by: Harold L Doherty | December 18, 2009 at 01:56 PM
I'm not exactly shocked. "Love and acceptance" don't cost any bucks.
I will be writing my Senator though. He has no business representing severely affected kids who may never speak and get out of diapers without proper help and saying there should be no cure. Especially when he is 21 years old and has no life experience.
Posted by: Chris | December 18, 2009 at 12:28 PM
the foxes may be guarding the henhouse BUT we have Jake and some other good people guarding the truth.
What a joke. Obama should be called on this-both nepotism and someone who will shamefully deny the epidemic.
Posted by: jen | December 18, 2009 at 12:24 PM
My nephew with Type 1 diabetes (age six - hmmmm . . . a year after kinder shots?) must be "insulin diverse."
That will make my sister feel better.
Posted by: Parent | December 18, 2009 at 12:07 PM
This ideology is not confined to autism. I have heard similar stuff from some spokespeople for the deaf (er, hearing-impaired). It likely springs from a dislike for the normal or natural, which is a common font of ideological thinking.
Posted by: Theodore M. Van Oosbree | December 18, 2009 at 11:50 AM
Thank you, Jake.
Here is a copy of the letter I sent to my Senators and Representative. Please feel free to use it as a template to write your own congresspersons.
Dear Congressman/woman (insert last name here),
I am writing to you to protest the president's nomination of Ari Ne'eman to the National Council on Disability. Mr. Ne'eman is a self-purported "autism advocate" who, ironic to his nomination, does not see autism as a disability at all. Rather, he sees autistic individuals as being "neurodiverse" and not requiring treatment but instead acceptance for being neurologically different from the general population. While I also advocate acceptance of people with autism, as the parent of a child with a more severe form of autism than Mr. Ne'eman's, I fear that his appointment to this council will be a huge step backwards to the treatment reform many, many parents are trying to make happen - treatment that will mean better qualities of life for more severely affected autistic children and adults. If you have any ability or say so to stop Mr. Ne'eman's appointment, you would be doing a great service to your constituents whose lives are affected by autism by seeing to it that someone without the best interests of our children at heart does not have the opportunity to distort and misrepresent how truly devastating this disease is to those affected and afflicted.
Posted by: Bonnie | December 18, 2009 at 11:44 AM
I have contacted my senators, and I hope everyone else will do the same.
How can we have a person on a disability council who has said that autism is not even a disabilixty? How can we expect Ari to fight for services when he fails to acknowledge the growth that is flooding our SSDI and our schools? Obviously, getting the best of services to people on the spectrum will require making sure our disability system does not expand beyond tolerable limits, preventing those already on the autism spectrum from getting the services they need.
Posted by: Jake Crosby | December 18, 2009 at 11:31 AM
There is plenty of room in the govt for a range of viewpoints to be represented. I certainly do not agree with any strategy to divert research funding to services funding, while at the same time supporting growth in support funding and better policies. I believe that Mr. Ne’eman is going to fight for things that are going to improve opportunities for my child as he gets older, and I applaud the nomination. Opposing this nomination based on his views on the origins of autism seems misguided.
“NCD provides advice to the President, Congress, and executive branch agencies to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, regardless of the nature or severity of the disability and to empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.”
This is a completely different mission from research, and there is going to be no expanded role of the government in treatment until it is supported by research.
Sure some kids improve for one reason or another, but the vast majority will be dealing with spectrum related issues and needs for the rest of their life. But we need to separate these issues. Don’t miss an opportunity to bring support for all of the lifelong needs and rights that matter once a spectrum issue emerges.
Posted by: jruch | December 18, 2009 at 10:47 AM
This guy is a dangerous extremist in word and deed. He and his small, naive constituency flat out refuse to work with other organizations on issues where there is broad agreement in our community. Issues like safety, community based supports, housing choice, and insurance discrimination. Apparently preserving the "purity" of their anti-science philosophy comes ahead of working together for positive change for all.
He has yet to explain how he squares their supposed support of research to discover new therapies with their opposition to nearly every medical research initiative in mainstream AND alternative communities. I think this is one guy about whom Autism Speaks and Age of Autism supporters share a similar view.
I am absolutely in favor of positive policy changes to help those with Asperger's Syndrome enjoy a higher quality of life than exists today, but it isn't going to come at the expense of my child's future. Unfortunately, Ne'emann thinks they are mutually exclusive paths. They aren't.
I'm writing my legislators and the Obama administration and everyone else should too.
Thanks for bringing this to my attention.
Posted by: Dadvocate | December 18, 2009 at 10:31 AM
The game is so rigged. Nobody buys into this pharma PR ND crap.
Posted by: Maggie | December 18, 2009 at 10:20 AM
Seems kind of funny that he would serve on a disability council since he does not think he is disabled. Maybe someone should load Ari up with Goldfish crackers, ice cream and soda and let him go nuts in the meetings. Wish my "nondisabled" daughter with autism could even understand what it means to be nominated to a council - let alone be able to sit through without screaming from pain the whole time.
Just one more disappointment from the powers that be.
Posted by: JulieC | December 18, 2009 at 10:15 AM
This whole idea of neurodiversity has been the hardest to get my head wrapped around. It took a while for me to understand it is a horrilbe threat!
I want to thank everyone that writes for Age of Autism, or blogs on Age of Autism in helping me to see this what neurodivisity movement it saying. We can not dismiss this as just a silly idea and who on earth even thought to make this stuff up. But to see it for what it is - that this whole idea is a threat,- yes, A THREAT. If this idea prevails then there will be no cure, no prevention, no finding the cause in the environment, no research on the immune system, no studies in diet,only an increase year after year of more neurodiverse children that are sick.
Posted by: Benedetta | December 18, 2009 at 10:12 AM
A way of normalizing an epidemic. I will contact my Senator. Someone who doesn't believe Classic Autism is not a disability should not be representing the whole of Autism on a govt panel. It's not that I don't want the Neurodiversity movement to have a voice, just that they are by far not the prevailing voice regarding Autism, particularly the more significant forms of that condition.
Posted by: AnaB | December 18, 2009 at 10:08 AM
Dont ya just love it when the neurodiversity movement's more vocal people are 40 year olds who in a desperate attempt to find reason for their alcoholism, their spousal abuse, their abandonment and abuse of children, their inability to hold a job suddenly find redemption in a their own recent diagnosis of autism. Andm then there are those in the ND crowd who think autism is a natural evolution of the brain creating a superior being.
I suspect their true diagnosis is more along the lines of schizophrenia rather than autism. Worthy of attention and perhaps sympathy but unworthy of respect for their particular ideology. It's madness.
Posted by: bensmyson | December 18, 2009 at 09:53 AM
neurodiversity viewpoint, pharma viewpoint, white house
you do the math
Posted by: MM | December 18, 2009 at 09:33 AM
Ari has consistently worked within the Disability Rights field, for I think it's 6 years now. He spent the summer as an intern in Congress.
Ari has consistently championed the rights of Autistics across the Spectrum with well-evidenced and reasoned arguments.
Autism Speaks and Bob Wright have a direct line to the Whitehouse. Now Neurodiversity has too.
Are you afraid of a balanced debate?
Posted by: Socrates | December 18, 2009 at 09:24 AM
President Obama must be opposed to curing autism to appoint this opponent of the rights of autistic children to be cured.
Posted by: Harold L Doherty | December 18, 2009 at 09:13 AM
The nightmare continues. It's some kind of alternate reality that just gets more and more unbelievable. Pass the ipecac.
Posted by: can't make this up | December 18, 2009 at 09:10 AM
"Are you that Guy?"
Posted by: Charlie | December 18, 2009 at 08:53 AM