Hi, Anxiety.
On Being Compared to Hitler and the Nazi Movement

Ari Ne'eman Nomination to National Council on Disability on Hold

AriNeeman By Kim Stagliano

The New York Times reports HERE that Ari Ne'eman's nomination to the President's National Counctil on Disability is on hold. When the autism community learned that Ari Ne'eman, a 22 year old man diagnosed with Asperger's syndrome at age 12, had been nominated to represent the autism community, questions arose about his willingness and ability to speak for the broad spectrum of disability within the community. 

Mr. Ne'eman is vocal advocate for self-advocacy.  I know of no one opposed to self-advocacy for those who are able, despite the cries within the Neurodiversity community that we in the treatment community are "anti-autism."  The reality is that many of our loved one can not self-advocate due to the severity of their autism. We use treatments in order to elevate our children's functioning to a place where they too can self-advocate.  We bristle when we're told that our children do not deserve treatments and research that could move them "up" the spectrum. Mr. Ne'emans organization, ASAN states:
Research priorities should focus on areas that have the most potential to improve the daily lives of Autistic people, such as communication and assistive technology, best practices in providing services and supports, and educational methodologies. Health care disparities need to be remedied and beneficial therapies made more widely available; however, the use of scientifically unproven treatments and those that focus on normalization rather than teaching useful skills should be discouraged.

"Normalization" for many of our children means the ability to use the toilet, eat and digest food, remain safe in public and much more, all related to survival, quite frankly.

In fact, the organization that has helped put autism onto the "mainstream" map, thus giving Mr. Ne'eman his platform, was launched not because of a bright pre-teen who was able to communicate, but a severely affected toddler who was seriously ill and still needs treatment every day, young Christian, grandson of Bob and Suzanne Wright, and son of Age of Autism contributor Katie Wright.

Do the highest functioning with the community have a right to dictate the services and research that should be available for their less fortunate "peers?"  I don't think so. 

I can't imagine vocally advocating against corporate employment training or college social skills and living support programs for students with autism simply because my child may never attend college or hold an independent, paying job. I feel no threat from the high functioning autism and Asperger's community - in fact, I look to them as beacons of hope as to what my children might someday achieve.  When a self-appointed spokesperson speaks out against the care my children need, I worry about his ability to represent the community. And I'm not alone, as you can read in the New York Times article.

Meanwhile, a nationally known autism advocate with Asperger's, John Elder Robison, author of Look Me in The Eye , has said that while he does not need a cure, he understands how more severely affected people with ASD may indeed require a different degree of care and treatment.  His keen logic allows him to see that my children need far more than a high functioning adult with Asperger's Syndrome. In fact, Robison is now working with Autism Speaks  to advance a promising new treatment called Transcranial Magnetic Stimulation  that has already proven to successfully ameliorate some of the less beneficial traits associated with his Asperger's, while retaining the strengths.

Is Mr. Ne'eman able, within the parameters of his Asperger's, to see the larger picture of disability within the commiunity and act on behalf of those who do not share his level of functioning? This is the concern throughout the community.

In January, we ran a posted a letter HERE from Autism Action Network to Mr. Ne'eman asking him to clarify his views on research and treatment for autism, and his response. In short, he declined to asnwer until after his appointment was complete.  
From the New York Times

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.

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Below is Ari Ne'eman's response to the letter sent to him by the Autism Action Network, with the letter after his response:

From: Ari Ne'eman
Subject: Re: Request for clarification of your views
To: "John Gilmore"
Date: Friday, January 15, 2010, 10:48 AM
Hello John,

I apologize for the delay in responding. I was asked recently by the White House to avoid any further public appearances and speaking to the media until after my confirmation process is complete and I was checking with them as to whether or not it would be acceptable for me to respond to the questions you have sent. Regrettably, they've asked that I avoid answering any questionnaires not provided to me by Senate offices as part of the confirmation process. As a result, I cannot submit my responses right now. With the exception of an article I submitted early last year (before I knew about the nomination) for the upcoming issue of Disability Studies Quarterly, I will not be publishing any writing until after the confirmation process completes. I mention the DSQ piece now because I don't want you to think I'm not being honest with you when it comes out.

However, I would be very interested in providing a response for distribution to your members after my confirmation process is complete. I would see it as a welcome opportunity to communicate some areas of shared belief and advocacy and explain, in a polite, respectful way, the reasons for some of the differences in opinion that exist between our perspectives. Would that be alright? Feel free to e-mail or call me if you have any questions or queries.

Ari Ne'eman
The Autistic Self Advocacy Network

Dear Mr. Ne'eman,

Below is the text of a letter that you will receive as a hard copy shortly from the Autism Action Network (formerly ACHAMP). We are seeking clarification from you on some of your statements and opinions prior to your confirmation. We look forward to your response.

John Gilmore
Executive Director Mr. Ari Ne’eman
Autistic Self Advocacy Network
c/o Karen Buford
1025 Vermont Avenue, NW, Suite 300
Washington, DC 20005
January 6, 2010
Dear Mr. Ne’eman,
Congratulations on your recent nomination to the National Council on Disability. The Autism Action Network applauds your work on behalf of people on the autistic spectrum to end the use of aversives and to increase support for people with autism in the community. You have made public statements, however, that have cause some measure of concern among our members. The vast majority of the members of our organization are parents or caregivers for low-functioning minor children with an autism diagnosis. Consequently, issues that affect low-functioning people with autism and their families are our primary concern. We would like clarification of your positions on a number of crucial policy issues to assist us in determining whether we will support your nomination. It is our understanding that you believe that a cure for autism is neither desirable nor should it be a federal research priority, and that too much research funding is used for finding the causes and potential cures and treatments for autism. For example on June 10, 2008 on Good Morning America your said, “We do not think to aim for a cure is the right approach to take.” Would you please clarify for us what your position is on the need for research to find the causes, treatments and possible cures for autism, and what levels of research funding you believe are appropriate?

Would you please clarify your position on health insurance reform for people with autism? There are a variety of bills at the state and federal level that seek to end health insurance discrimination against people with autism. Would you please identify specific autism health insurance reform legislation that you endorse? And would you please provide us what the minimum services and levels of coverage you believe are necessary?
According to your website you received a diagnosis of Asperger’s Syndrome at the age of twelve, you also appear to be a very articulate young man attending college and launching a successful career. Please explain how your circumstances equip you to understand and represent low-functioning people with autism and their caregivers?
The CDC recently released new epidemiology that show the prevalence of autism is now 1 in 110 among eight-year olds born in 1996 which represented a 57% increase over the number of eight year olds born in 1994. Do you think the real rate of autism is increasing or not?
We welcome your prompt reply, which will be distributed to our members. Please do not hesitate to contact me if you have any questions.


Autism Action Network

Kim Stagliano is Managing Editor for Age of Autism.



As I said he's part of the Offit Youth.




Petition to oppose Ari Ne'eman. Please send a message that Ne'eman does not represent the majority of people with autism.

michael framson

Gatagora, I would put Teresa Binstock and Jake Crosby on the IACC. Their knowledge and integrity would do wonders for what makes that group deliberately dysfunctional.


"Afterall, a future with no autism, means a future without my son."

ick. I am so growing so weary of this type of nonsensical argument. Autism does not define your child. Your son is smart, amazing, beautiful, compassionate... whatever it may be... in spite of his autism, not because of it.

Autism Grandma

Posted by Gatagorra: "But in the end, who else would government put in this post but a pharma-leaning enemy of safer-vaccine proponents?"

Gatagorra, your entire post is right on the money, and we all know that "somebody" is always behind these nominations to government positions. That "somebody" is a group of co-conspirators representing Big Pharma and their paid government trained monkeys---the same kind of groups who place their lackeys into the F(ederal)D(eath)A(dministration) and the C(enters)for D(eception)and C(orruption). They hand select their nominees from the same puppet gene pool of those who willingly represent their interests and do exactly what they are told.

And as Benedetta says, "I can not help thinking that Ari has someone behind him pulling his strings."

Since Ne'eman is "A senior majoring in political science at the University of Maryland", and has been exposed here as a shameless self promoter who utilizes his own propaganda, he is the perfect candidate to promote the industry and political anti-recovery and pro-vaccine propaganda.

Birgit Calhoun

The problem with Mr. Ne'eman is that he has no compassion for a parent like me who would like to see research done so that the autism epidemic recedes. I am convinced that it is caused by environmental factors and not so much by bad genes. My tack is that autism research, when done right, will also help us non-autistics be better off in the long run. Since I am certain that at least some, if not most, of the autism cases are caused by mercury, I see no future in anyone who promotes self-advocacy to lead this country out of this epidemic. I believe that Alzheimer's in old folks is not so different from autism, and I think that research towards causes and a cure for any disability have nothing to do with self-advocacy.

Big D

As stated on the NCD web site:
NCD’s current issues under research include"Improving Access to Health Care..." - so, Melody whatever you want to parrot about the graces of Ne'eman be mindful of the fact that his views will impact healthcare for a sub-set of the military. Obviously, he has made it clear what his views are and accordingly I am going to write my Senator and ask that he also put a wrench in the nomination. Hell, I wouldn't even feel comfortable if this guy was the PTA chair of disabilities for my kid's school!


Dadvocate - even just reading the discussions between autism self advocates and biomed parents just sucks the energy right out - thanks for the excellent synopsis and sanity check in this case.

I did want to comment on what Melody writes:

"I just hate the misconception that just because someone doesn't believe in a cure they can't possibly have anything but bad intentions for other Autistic individuals."

This seems to be the underlying straw man argument used to suppress concerns here over this particular appointment. There are some varied opinions, but I don't think anyone in the thread is worried about Mr Ne'eman showing up at their door with a club. The concerns are more legitimate than that.

The question is - does Mr. Ne'eman hold the best intentions for all Autistic individuals? And would this not simply include exercising the same kind of tolerance and acceptance and respect that he advocates for? It's one thing to find common ground and to stop and build successes there (kudos), but he can't go on to torpedo a particular segment of same broader community he claims to represent, based on his specific "beliefs" or the beliefs of another segment. The person for the job needs to be autism spectrum agnostic, not out drawing lines in the sand.

just my 2c...


It is your choice. I'm not trying to stand in proxy of Mr. Ne'eman, nor did I state that he is 'the' key person in the progress made re: seclusion and restraint. He, with many other groups, have been key. That does not mean you can strip him of what he has done.

I don't know where Mr. Ne'eman stands on biomedical issues, nor do I think it is important for a council whose sole purpose is to empower the disabled. If your child has medical issues along with their Autism, by all means treat them. Normalization in Neurodiversity terms only speaks of changing nonthreatening behaviors with the sole purpose of making a person look normal.

Normalizing behaviors takes a great strain on those of us who have an ASD. You can see it in high functioning children. They work all day to look normal at school, only to come home and crash and have a rash of behaviors at home. Why put those sorts of unnecessary pressures on a child who is also trying to speak in a way that's understood? And that has to work hard to write legibly? And has to work hard to overcome the sensory stimuli in his day?

Also, Kim, I was not trying to twist your words. Much of my statements were directed towards Dadvocate. I understand that some people give credit where it is due. But to ask empathy in a way that you can see it and understand it of someone with an Autism Spectrum Disorder, well, it seems like a two-edged sword. It is hard for anyone on the spectrum to understand what it's like to be in someone else's shoes. We can have sympathy. We can have empathy at times, though our outer appearance may say otherwise. We may even be over empathetic.

As for not wanting him to take the seat in the appointment because he doesn't agree with Autism Speaks' practices and mission, that is your right. I will not try to change anyone's opinions, but I do want to make sure the facts are accurate. Who here knew that Autism Society of America stands behind his nomination? Or Easter Seals? Or The Special Olympics? These are still very important parts of the Parent Autism Community.

But I think that's where everyone is confused. I think there should be a distinction made. There are two separate communities with respect to Autism. Within those two, there are several subsets. There is the Parent Autism Community that consists of parents with Autistic children, whether they be adolescent or adult. Then there is the Autistic Community. This consists of those on the Spectrum. I believe his appointment was because of his active voice within the Autistic Community.

If you chose to disagree with his appointment based on the facts, that is your choice. I do not care to change people's opinions because I believe in choice for all people. I just want to make sure people have facts before making a judgement.



You said:

"Mr. Ne'eman chose to declare war on these organizations (and much of their core mission)some years ago, instead of working together on issues of mutual interest."

I have to say that your statement is probably the best reason I have heard yet to fight his nomination.

not happening

Melody-- you wrote:

"Ari Ne'eman has been a key person on getting "The Preventing Harmful Restraint and Seclusion in Schools Act" (H.R. 4247) presented and passed. I know it's surprising as ASAN and Ari Ne'eman don't always gloat about what they have done".

No, Ne'emen was NOT the "key person" to get the reports of restraint and seclusion to the GAO and he DID gloat about and exaggerate what small part he did play to his following-- just as you using this small efforts as a means to campaign for him. We know who the key people are behind the GAO effort, the ones who've worked on this issue for years before Ne'eman was ever involved: http://www.ageofautism.com/2009/08/the-angel-in-the-engine-reports-of-restraint-seclusion-and-special-treatment-in-special-ed-.html

I think people are grateful for the effort that Ne'eman pitched in at the *11th hour* on quite a few activist efforts and they politely ignore the fact that he then writes on his site that he was chiefly responsible for any progress. He did this in the Nate Tseglin case when, in fact, it was about 50 parents-- many related to AOA-reader types-- who showed up at the Orange County court house on Nate's behalf that made the impact.

Everyone knows that Ne'eman is a political animal. They know what he wants when he approaches an activist effort. He wants credit; he's amassing badges. Because he's a political animal who seeks clout and often manages to get some because his message is generally pharma-friendly, they're not going to stop him from pitching in. The really hard working people in these efforts don't CARE who takes credit as long as there's success and justice. So they let Ne'eman play his games.

But as a bystander watching people sweat for these particular causes, I've been taken aback by Ne'eman's pattern in this regard even if the activists themselves are more philosophical about it or outright ignore the prank. The fact that he's using these issues as "badges" to serve his own ends now is not surprising.

G White

Ne'eman's primary function is to obscure the difference between Asperger's and "autism". When he calls himself autistic and claims he does not want to be cured, he sells the public a false image of autism so they belive that "autism" is no big deal.
When the general public believes that "autism" is no big deal, they just don't care that the numbers are increasing. They believe that "autism" is nothing more than being a "nerd" with social problems, a condition that has always existed for nerds with social problems, but has nothing in common with the horror that afflicts actual autistic children.
It's all public relations.


Melody - You have your view and I have mine, which is based on experience. I don't need or desire to have a proxy discussion. Mr. Ne'eman has done some good advocacy work on the issues he cares about, that I'll easily and readily concede. However, I think you give him and ASAN far too much credit re H.R. 4247 and other initiatives. Many disability groups and individual advocates, elected representatives and lobbyists are key in the legislative process, all working together to get this, or any other, bill passed.

Law and policy often makes strange bedfellows and you need to regularly work together with people whom you don't see eye to eye with (and sometimes loathe). I don't see any evidence that Ne'eman has or can do that.

My strong and unwavering opposition to his appointment is very nicely demonstrated by the conspicious absence of the largest and most important autism advocacy groups in the U.S. on the list you provide below.

Mr. Ne'eman chose to declare war on these organizations (and much of their core mission)some years ago, instead of working together on issues of mutual interest. I think that approach is coming back to bite him, no matter how hard he uses proxies to try to "walk back" the record.

Maurine Meleck

How about normalizing our childrens' bodies so they won't suffer from gut pain, oxidative stress, and the like. How about normalizing their immune systems so they won't get every illness that passes through their town? How about fixing their glutathione levels, sulpher levels, vitamin D levels etc so they won't be prone to diseases like cancer in a few years. These are issues that concern so many of us. Our children are just plain(well, not really plain)sick all over. Either Mr. Ne'eman doesn't get it or he gets it and doesn't care.

Stagmom Mom for Melody

Melody - you're twisting my words. I have not said that Ari is unqualified overall. I have said that he is missing a critical empathy and goal that is important to our community. I also suggested an Aspergian whom I think meets all of the criteria for the community, while vocalized that he himself does not want a cure. That's John Robison. If Ari Ne'eman brought all of his talents to the table and ALSO approved of electric shock aversive treatment for autistics, I can imagine there would be an outcry of refusal for his nomination. NOTE I AN NOT SAYING HE APPROVED OF AVERSIVES IT'S AN ANALOGY. We're talking about one major "campaign plank" that we feel is missing. Not the entire platform.

Thanks. KIM

Media Scholar

This guy really looks like a pre-fab scam. You can tell right away he a member of the Offit Youth.

Manchurian. Very.



I would love to discuss all the things Ari Ne'eman has done that shows he's the right choice. I would love to discuss the groups he has worked with. I would love to discuss how Ari is anything but polar.

But first, I must say, Ari is complying with the White House's request that he stay away from making any public comments while the confirmation process is being executed. I know that he could go against that, but would that mean not working with our government.

Okay. Now that that's clear, I will go into the rest of issues many have brought up. Last night I tried to be eloquent, as I try not to be confrontational.

Ari Ne'eman has been a key person on getting "The Preventing Harmful Restraint and Seclusion in Schools Act" (H.R. 4247) presented and passed. I know it's surprising as ASAN and Ari Ne'eman don't always gloat about what they have done. He's also given much testimony to different pieces of legislation and judicial rulings including testimony on what could be put in place to prevent discrimination based on the results of a personality test.

He was also appointed to the New Jersey Special Education Review Commission. He's a board member of TASH ( http://www.tash.org/index.html ) and the Autism National Committee ( http://www.autcom.org/ ). His ASAN organization is part of the JFAAN which is a coalition with the following organizations involved:

ADAPT, American Association of People with Disabilities, American Council of the Blind, Hearing Loss Association of America, Little People of America, National Association of the Deaf, National Coalition of Mental Health Consumer/Survivor Organizations, National Council on Independent Living, National Federation of the Blind, Not Dead Yet, Self Advocates Becoming Empowered, United Spinal Association.

Would any of that suggest that he cannot work with others?

He may not believe in genetic testing to lead to prevention of Autism. He may not believe in normalization. But he does believe in helping Autistic children progress and become more independent. If you believe normalization means not potty training your child, you would be wrong. Normalization means changing non-threatening 'behaviors' in your child to make them look normal. Making your child give eye contact just to not look 'abnormal', or stopping your kids from handflapping when they are excited. Those are examples of normalization. These do not hurt anyone and are only done because of the social stigma associated with them.

If anyone would actually like to discuss with me, I would be happy to. I just hate having to continue to shout to the hills when some are going to continue to ignore what is said. My email is melody at asparenting dot com. Feel free to email me. I don't mind at all. If you want to ridicule me, go on ahead. I just hate the misconception that just because someone doesn't believe in a cure they can't possibly have anything but bad intentions for other Autistic individuals.


I'm not so sure Ne'eman's going to back down. In fact, I'm seeing evidence that he's whistling Dixie-- perhaps just long enough to get the post.

Ari Ne'eman appears to have quite a few people like "Melody" campaigning for him. I've just come back from witnessing some online group stumping that took the cake.

It seems that Ari HAS gotten some advice on quelling the opposition from the "recovery" community, which has been potent enough to jam up his nomination. So for now, his "campaign staff" appear to have been instructed to tell us that, sure, Ne'eman supports DAN and biomed and cares about the lower-functioning, sick kids with autism! I asked for citations but apparently this new direction was just decided upon and Ne'eman and his unofficial fan club haven't generated them yet.

The "campaign staffer" did slip back into old Ne'eman jargon, adding that Ari "supports" DAN but is just concerned that trying to recover or prevent Asperger's is "genocidal" and "soul-destroying", lol.

I can just imagine who in government talked to Ne'eman and how the exchange went. "Who cares if some parents put their kids on a special diet and throw in a few vitamins? Your mission is to get that post and from *there* you can impact policy. You're being labelled 'too divisive'. Try to soften your approach a little bit, throw them a bone". Next they'll probably tell him to take the word "genocidal" out of his rhetoric.

Ne'eman could follow Thomas Insel's example in this sense-- the NIMH website on autism, next to roughly a thousand words on the merits of psychiatric drugs and a few thousand more on the merits of gene research, includes a 24-word homage to "parents report" of gluten-free, dairy-free diet. There's our bone. Anyone barking and rolling over yet? Arf arf.

So now my impression of Ne'eman is a sight worse if it appears he would do or say ANYTHING to get that post-- things that will never impact his behind-the-scenes activities, of course, as he continues to try to ban access to biomed and demonize parents who try to recovery their children or prevent vaccine injuries.

And even if Ne'eman cleans up his approach, never forget that it's his friends and wacky followers who hit the Huffpost comments sections with vicious attacks on Andrew Wakefield and biomed parents, who join groups (along with Ne'eman-- yep, he's a member) called things like "Wakefield is Guilty" and "Autistics Against Age of Autism"; who write anti-recovery/pro-all-vaccines/pro-Offit "Skeptic" blogs and who blog for the Baltimore Examiner, openly calling recovery proponents "Psychos" and "Al Qaeda" and "Nazis". Ne'eman, from any pulpit, would still be calling Generation Rescue et al "anti-vaccine" and worse.

But in the end, who else would government put in this post but a pharma-leaning enemy of safer-vaccine proponents? As long as he's not the sole rep, I suppose we could do worse. But as a sole rep, Ne'eman is about as bad as it gets.


I can not help thinking that Ari has someone behind him pulling his strings.

That would be the case of my son???

I don't mean to sound like I do not believe a -- well I do not ---if you have autism even high functioning autism you are limited. Or at least mine is.


Upon first hearing of Mr. Ne'eman's ill-considered nomination, I predicted that he would eventually elect to withdraw himself from consideration. I still believe that will happen.

I see very little (if any) evidence that Mr. Ne'eman is able to work with other advocacy groups or individuals in our community who have missions viewed by ASAN as incompatible with their narrow agenda.

I have also not one iota of evidence that he has been able to "agree to disagree" with other individuals and groups in our community on some issues and work together on the many issues of common interest facing individuals with autism. On the contrary, all I've heard and read have been prevarications, "walking back" past "on the record" statements, and an apparent pattern of hiding behind others to avoid answering tough and legitimate questions about his views and qualifications.

What he has demonstrated though, is a track record of political theatre, issuing impossible demands, and a need for total control that ought to have automatically disqualified him from consideration for this post.

I've disagreed with some on this board in that I have long advocated that parent groups needed to understand and include self advocates in policy formulation. That is only now being heeded by some and the long delay has, in my view, only served to radicalize far too many in the self advocate community.

It's not that I don't want a self advocate appointed. I do. But I don't think Ne'eman has the temperment or demonstrable skills to hold a policy making position as critical as this one. One where he will be required to practice the art of compromise.

He or any other appointee will also enjoy near unfettered access to and legitimacy in front of law and policy makers. The appointee, no matter how long the term or focus of the Council's activities, will be charged with representing the autism community in the broadest possible manner. I don't think Ne'eman is up to that task.

Lorene Amet

Kim, well said; autism as currently defined, is such an heterogeneous condition that it requires people able to acknowledge its full diversity, strengths and challenges to represent it. The issues faced by low functioning individuals are essentially ignored by the neurodiversity movement; this is particularly true of the health comorbid problems. Most Asperger individuals have not witnessed these problems, learned about them or experienced them. Having said this, we must also acknowledge that autism is not solely a vaccine/ heavy metal issue and that it can potentially benefit from a whole range of interventions and services, some of which had been promoted by the ND movement.

Regarding the issues of pre-natal screen, this debate is simply ridiculous, because from what is known of autism today, there is not one single gene that has been found to be predictor of the condition, even Fragile X or NF-1 mutations are not necessarily associated with autism. If a genetic association had been simple, it would have been identified by now. Instead, the genetic seems to imply the existence of susceptibility genes, for example those associated with immune impairment, or involved in the control of epigenetic modulation. In those instances, the answer to susceptibility is not abortion but prevention and management. Prevention is not by avoiding those genes but by avoiding the environmental factors that impact on them.


Personally I feel he maybe should be on this council, but he should not be the sole representative for the ASD spectrum. I'm not sure that any one person could do that effectively.

This part from the NYT article was interesting to me:

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

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

Assuming the Times was representing his views accurately, and although, I'm not sure how many parents have ever actually advocated for genetic research, this sounds like he is leaning towards coverage on ABA-type therapies or facilitated communication and possibly some types of biomedical care?

I wonder if this hold on his nomination really has much to do with concerns in the ASD community?


I'm quite curious about certain things. The National Council on Disability ( http://www.ncd.gov/ ) states the following:

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.

Would any of you say that Ari Ne'eman does not agree with any of those goals?

Some have argued that Mr. Ne'eman cannot speak because of his age. Others have argued that Mr. Ne'eman cannot speak because he is too high functioning. Yet others have argued that if Mr. Ne'eman can speak, but only if they get a say as well.

I ask you, if he were your child, would you be proud of what he has accomplished? Within 10 years of being diagnosed, going to a self-contained school, and being subjected to acts of abuse, would you expect your child to rise above that to help others?

Just because Mr. Ne'eman has learned the rules of political engagement, does that mean he lives a life without disability? Does that mean that just because he can speak for himself that he did not endure just as much as other children?

I am an adult with Asperger's Syndrome. I am disabled and unable to work. I luckily can function enough to have two wonderful Autistic children. One of which we know will never function even as much as I do.

That does not mean I cannot work with the Ari Ne'eman's of our community to make sure my son isn't forced into a group home. It doesn't mean I cannot work with him to gain at least one self-help skill. It does not mean I have to let him sit in a self-contained classroom just because he cannot communicate like the other kids. It does not mean I must hide from the world. What it does mean is that no matter what we are, or where we are, we are still human beings. We still should have the same rights to engage our communities in a meaningful way.

I know the struggles of the parents with "lower functioning" children. I know the struggles of the parents with "higher functioning" children. And I know the struggles of at least some of the living Autistic adults. Whether you believe there is a cure or recovery. Whether you believe we are all on the same spectrum. You must believe that we are all just as deserving of respect, assistance, and understanding.

Autism and Asperger's Should NOT be lumped in together

Yeah yeah yeah Colleen

I'm surprised you didn't begin that rant with "my fellow Americans".

Just stay the hell away from my kid, and others like him, that's all I'm saying. The desire to be left alone is not sociopathic. The desire to exercise your own will in spite of the needs and wants of others, is. This makes Ari a sociopath.

Any questions? Do we need PDF's of he dictionary?


@Kim, I had another post, but it is no longer up. Oh well. I was just saying there is a difference between us. You dream of a future without autism. I dream of a future of progress and acceptance. Afterall, a future with no autism, means a future without my son.

Jenny Webster


He wants the TOP governmental position in autism advocacy (for lack of a better descriptor, that IS what it IS) and he is FLAT OUT SAYING that he REFUSES to advocate for SOME in the autism community.

That would be like appointing a Cancer Czar who said, "I will address the issue of cancer --which I think is a wonderful natural condition and shouldn't be cured!"


Since my others posts have not made it to the board, I am assuming that they were lost in transit?

However, the statement:

"Someone whose social behavior is extremely abnormal. Sociopaths are interested only in their personal needs and desires, without concern for the effects of their behavior on others."
Yep, that about sums it up. The guy is a sociopath."

That, in my opinion, is far more descriptive of your behavior today. Since people on the spectrum do not share the ability to see beyond their own needs, or have the ability to empathize with others, it may appear as sociopathic to you, but in fact, it is called AUTISM.

However, someone who does not have autism and is "normal" in every other respect who behaves this way would be considered sociopathic.

What is stunning to me is that if someone outside our "community" said such horrible things about a person with autism, the entire community would rally behind that person and demand an apology. Such as we have done many times before (Savage, various television shows, etc.)

But if a person within the community decides to hurl insults on the comments page of this site toward a HF person with autism, and toward all of those with Asperger's and their parents...the "community" is quiet. The silence is deafening and speaks volumes.

How disappointing.

Stagmom for Rethinking

@Rethinking autism. No, I did not. In fact, I responded. Kim


Kim, Did you take down my last post?

Autism and Asperger's Should NOT be lumped in together

Calling names? I'm calling a dx.

He IS a sociopath.

This is from the American Heritage Dictionary.....

"Someone whose social behavior is extremely abnormal. Sociopaths are interested only in their personal needs and desires, without concern for the effects of their behavior on others."

Yep, that about sums it up. The guy is a sociopath.

Someone also accused one of us of saying that "these people don't have a right to speak on autism"

NO, THEY DON'T, not in the way that they are doing it. They are attempting to speak for MY CHILD. NOBODY speaks for my child BUT ME.

It's a "SELF" advocacy network. If they would adhere to the "self" part and leave our kids the hell alone we would have no problem. That IS the whole problem.

Nobody is asking them to stop advocating for themselves, we're only DEMANDING that they stop trying to speak for our children.


Look what I found:

Ari Ne’eman and the Controversy Over an Autism Cure

I would agree that I am also very opposed to a genetics test that would have clearly aborted both of my children (including the not-asd child w/issues), as well as me and my husband (as I am quite sure we share many of the same genes). I believe that both of my children are buggered because of their "environment" (and their very different experiences - chemically, hormonally, one vaccinated, the other not, etc.).

I really think there are four types of folk - in terms of research/belief systems:

1) Autism Science Foundation types: ASD is 100% genetic. The rates are increasing because of better diagnosing. Very scary yucky people. How's that for scientific? "Yucky people." LOL.
2) Autism Speaks - who unfortunately, do not control science as they have to straddle every world scientifically. Autism Speaks isn't a benevolent epigenitic dictatorship that only funds things out of the UC Davis MIND Institute and like minded universities - how I wish it was. They have to balance all sorts of university researchers voices on their many boards/funding streams. So they have to balance the 100% genetic types AND the epigenitic types, as well as all the other areas of Autism - ABA, political advocacy, etc., etc.
3) Us - most of us are probably epgenitic types in terms of causation: something caused my child's system to spiral (and NOT my neighbor's child). But we differ from the University epigenitic types in two ways: we'll openly blame vaccines (one of many environmental triggers) and we want to fix it NOW - we can't wait for "corroborated multi-site science" to catch up.
4) The Autistic Self Advocacy Network (ASAN) types (Ari Ne'eman) - who "seeks to bring about more accommodation and acceptance of neurological diversity in our society." Who want science to stay away from genetic research - as that research will abort all of our future children and even our future selves - that being autistic is a different way of thinking - that they were born this way. I'm paraphrasing from everything on this entire lively conversation on this board here.

So we come full circle with ASAN: born this way - different way of thinking - that means 100% genetic to me - Which is why this angers me re: the ASAN and/or the Autism Science Foundation. I am very much an epgenitic type, and not just about vaccines damage - all chemical/hormonal damage. But, the ASAN's fight for acceptance and accommodations is clearly worthy - but not enough. I'm with EVERYONE who says they wish John Robinson was nominated.

Colleen - well said (comparing ASD community to CP community) - How ridiculous that we don't belong as our children are now high functioning (or high functioning to begin with). I know - let's start a Age of Autism for VERY autistic parents and a different Age of Autism for the HF families. Joking. Thank you Kim and everyone at Age of Autism for making all of us feel welcome. Gatogorra - I had to laugh when I read your earlier post. My husband and I gave a knowing look to one another when my sister was beating us up re: promoting baby doll play with our second son - the NT w/serious issues one ("you'll make him gay!"). That would be the least of our concerns - and, we too, would jump for joy for him to grow up to be a well adjusted, fully empathetic, NT joint attention adult - and I could give a you-know-what how he floats his boat.



I was not responding to your post. I was responding to the post that stated that lower functioning children are in danger to these events, as opposed to higher functioning children or adults.

I didn't respond to you at all.


Colleen, huh? Are you having some problem following the arguments here? You wrote:

"Instead, they are arguing that a high functioning person with autism should be separated on the spectrum, that they do not live in danger of being abused or raped and that they have deep relationships with others. They cannot possibly be "lumped in" with a more affected child".

I wrote that RuPaul and Ellen DeGeneris don't have to worry so much about being raped and abused. Those people aren't HFA. They're gay activists in case you're not aware. The point is that being gay is not a disability. Neither is being black or Hispanic (which my children are).


"So what is your real problem with Ari's appointment? I would love some real and raw honesty here so we can quit the inner bickering and get some real progress made already."

As a person on the autism spectrum who is currently unemployed, fired from multiple jobs and has had all sorts of problems, I will be happy to answer Alane's question.

Aside from the specious argument that the NDC has nothing to do with science research or cure research, there are other problems.

Ne'eman is a 22-year-old who has never had paid employment of any kind yet gives input on how to help autistics find jobs. One of his solutions is to eliminate social pleasantry as a criteria for hiring, how absurd is this? He also has stated that it is only society that stops autistics from being able to function okay. He was involved with the no myths PSA which said that autism is not a devestation or a tragedy.

Most stupefying of all though he is seeking an appointment to a disabilities council as an alleged stakeholder, he has on occasions stated that he does not believe that autism is a disability. I have documented these extensively on my blog www.autismgadfly.blogspot.com (shameless plug I know).


Ari has a sweet face.

With me being a mother of an aspergers or better description would be a young adult male left with a brain injury caused by a stroke that he suffered from as a baby because of a third DPT VACCINE SHOT, I have a soft spot for this young man.

It is hard for me to believe this face I am seeing has some one else's voice behing him. I know that would probably be the case of my son. I could not imagine my son into anything but his "God of War" video game. He might have a voice for that???

My young man loves to put on his suit too, but it is rare because he has menial jobs that will not support him, not even medicaid, and the government will help.

He missed to test the government of Ky scheduled. On one of those days it snowed and they even closed the city schools - it is bad roads and so I cancelled but I also begged for us to be reschedule and with luck the did.

Can you believe my son got the flu when it was next sechuduled!!! I had little patience with my son, I thought he should let me drive him and he could take the test anyway. But he said he was really sick and even missed two days at his commmunity college. I did call and said once again and told them we could not come and to please reschedule again. I got the same illness the very next week - it was rough!

But now I have called and called and called and they will not return my calls or rescedule. What am I going to do. What is he going to do.

All it was - was a test to tell them what he is interested in. It is an all day test????

I wonder if Ari as he is standing there in this picture, showing off that sweet face is really thinking about getting home, shutting himself tightly into his room, lining up his plastic collective figures of video games, and just playing his video games all day long, coming out long enough to get himself a quick something to eat: and dreading when once again he has to venture out to school or where ever he has to go????


ASD will drive you mad.
The present discussion is a case in point. What other disorder would people argue over a need for a cure? Yes, with Aspergers you can appear as if you need no cure just understanding from society. As John Robinson has recently found out that is not true. There is a whole world out there that Aspergers are BLIND to. Can some one with Aspergers have a life with out a cure sure but that doesn't mean we should stop looking for the path that will lead all Aspies to seeing the WHOLE WORLD and having a whole life. Can a solider who lost his lower leg go back to war with a prosthetic yup you bet ya but given a choice that soldier would want his lower leg back. That soldier knows what he is missing an Aspie by definition does not.
I wish Robbinson was appointed to the council. Mostly because as a parent he gets what we are all going through. While a 20 something is clueless as we all remember our own clueless years. No matter how enlighten that 20 something maybe. Parenthood lets you see how much ASD high need kids truly need.

Plus Robinson has been given a glimpse of the world he has been blind to for all his life. Given a choice I bet Robinson would not trade the glimpse he has been given to go back to the person he was. Who would want that anxiety back not me.

Keep up the good fight everyone my prays, hopes, and Dreams are with you all no matter what you think ASD kids need.

Stagmom for Rethinking

Hi, Rethinking - I disagree. Ari has been nominated as the representative of autism for this council. He has stated categorically that autism does not need a cure and that the treatments I use, that have helped my children function, are not worthy of study. He does not represent my children's needs. Without these treatments, my girls are unlikely to achieve any of the goals of the council. Perhaps the answer is that the council needs more than one representative for autism - someone who is a self-advocate, which I believe is indeed worthwhile. And someone else to speak for those for whom autism is a very different kettle of fish. Thanks for the conversation on this.



"Do the highest functioning with the community have a right to dictate the services and research that should be available for their less fortunate "peers?" I don't think so."--Kim Stagliano.

Kim Stagliano is ridiculous. Kim, do you realize that you are saying that an autistic person has less rights than you do? Do you realize the purpose of the NCD? According to an article on Newsweek.com: The National Council on Disability, however, isn’t interested in genetic research; it’s purpose 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.”

So please Kim. Stop.


How ironic it is that so many within this community raved over the Temple Grandin movie. How ironic that you all found her story so compelling and wonderful and inspirational. And you also felt that it did help shed light on so many issues autism holds for people.

And here we are with some people on this board not arguing valid points about why he should not be appointed to this board. (I understand that some of you have and this isn't to you)

Instead, they are arguing that a high functioning person with autism should be separated on the spectrum, that they do not live in danger of being abused or raped and that they have deep relationships with others. They cannot possibly be "lumped in" with a more affected child.

Seems an awful lot of parents on here need some serious learning of their own. Perhaps you would like to watch that movie again?


Ari's quote - From the NYT article:

"Historically, the kind of genetic research supported by many parents of children with autism, Mr. Ne’eman has said, has been used to create prenatal tests that give parents the ability to detect a fetus affected by a particular condition."

--When do we ever advocate for genetic research??? We biomed parents have been so over genetic research for a long time. It has yielded nothing and most of our kids who have had the testing do not have a single one of the genes that have been identified to explain 15% of all Autism. What the parents who oppose his nomination advocate for is BIOMEDICAL RESEARCH.

In all reality there are two distinct Autism communities. The govt. cannot choose an advocate from one side or the other without picking sides. Therefore, the only solution, IMO, is for the govt to either select a moderate, such as John Elder Robson or Stephen Shore, or appoint 2 members from the Autism community - 1 ND & one not.

Autism and Asperger's Should NOT be lumped in together

Kim - As am I.

In a perfect world, I'd love to advocate for those who can and DO function in society in spite of their issues. I'd love to make sure they have employment opportunities, equal protection under the law, and most of all the acceptance for that which they cannot change.

However, more and more, it seems like they are becoming the focus in our community, and "they" seem to want it that way. This is why I'd like them to leave the "community", because they only seem to focus on themselves.

So when I see a large group of folks spouting off about how independent they are, and how we have to accept them, and at the same time include those who can't care for themselves, I have to speak out against them.

I mean, we've all seen THIS crap... http://www.youtube.com/watch?v=lgbr8lTsrCA

They don't even use the word "Asperger's" in the video.

Yeah right Ari, let's leave the stereotypes behind.

This kid is a stereotype. http://www.youtube.com/watch?v=DXbe2VHa37w

So I guess we're leaving him behind, right Ari?

Hey look I'm sorry to offend anyone, but this is just getting to be too much. People with Asperger's and HFA are drastically different cases than what many of us are dealing with. People need to know there is a HUGE difference, and they need to know what these people go through.

YES, the lower functioning ones ARE more deserving of support. If for no other reason than they can't support themselves. If you have a childed labeled with Asperger's who is unable to attend school, that sounds like an issue with the label they received, because it doesn't represent the vast majority of those with Asperger's.

As a result, your child may not be getting the care that they need.


And once again...you feel that name calling is the solution.

Sociopaths? Really?

It is downright frightening to think you are an advocate of any kind.


I think some of you have misunderstood me. I apologize. Many of our kids have high functioning autism - we aren't separating them out at all! Nor Asperger's - which many of our kids have as well and we know can be profoundly debilitating and require treatment. I'm only referring to folks are vocally claim to be against treatment - not all our kids. Thanks. KIM

Amy C

My child has Asperger's. However he cannot attend a school building. He is excluded from most clubs and activities.

The likes of many of you here are testimony as to why this is. Because you have labeled my son "high functioning" and not ASD, you have told society that my son is less deserving of supports and services than your child.

My ASD child has had 4 mental health inpatient stays because of how society has treated him. All before the age of 9 years old.

do NOT for one minute tell me that I don't know what it's like to struggle because my son has is so called higher functioning than yours.

You all are against Ari because he's very functional. How hypocritical because you desire the same for your child some day.

Ari only wants to make the world a better place for ALL our kids. But apparently that's not ok with you. You only want it better for YOUR kid.



The people I would most like to see nominated to this position are Theresa Binstock or Jake Crosby, though it's not up to me.

Ne'eman understands the degree to which his advocacy is useful to pharmaceutical companies, which makes his movement a bit "astro turf". I've had the "honor" of debating with Ne'eman online regarding the use of psychopharmaceuticals in autism. His chief concern with the issue was political alienation, of appearing to be "anti-pharma"-- not the number of children dying or being injured by the drugs, not even the idea that drugs are intended to "normalize" autistic behaviors.

It was a shocking bit of hypocrisy on his part and he did effectively end up defending the use of psychotropes as "evidence based". In response to others posting "evidence based" research on the dangers of the drugs, he pulled a Rambo, no longer pretended to argue rationally and simply flung out accusations of "Scientology", intending only to censor the discussion.

Ne'eman's defense of drugs may have come from an actual naive belief in the righteousness of mainstream medicine or it may have been calculated, hard to say. He clearly thinks that if he plays a certain game, he may see some of his platforms put forward. I believe he sincerely would like to halt the aspirations of genetics research toward selective abortion-- a position shared by the entire autism-recovery community. He has stepped up to stop restraint and seclusion in schools (though not chemical restraints; and he also tends to step into these efforts at the eleventh hour and then take full credit for work done by others if any progress is made).

But unless the ever-rising numbers of the epidemic are stopped, those trends (abuse in school; the search for the gene that could justify selective pregnancy termination) will not stop. Ne'eman, by calling for censorship of and against funding of recovery science and railing against those who argue vaccine/environmental cause, is actually part of the problem that will make things worse for the disabled. This will be particularly true as resources have to be divided between more and more (and more and more) disabled individuals and as taxpayers-- as they typically do in hard economic times-- begin to resent the disabled like a plague of locusts.

Ne'eman has also been caught online "plotting" to cast the safer vaccines/autism recovery movement to religious groups which attempt to "reprogram" homosexuals.

I don't know about anyone else but I'd cut off at least an arm and a leg (and probably more) if I could get a guarantee that my son would grow up to be RuPaul and that my daughter could be just like Ellen DeGeneris. Independent adults, capable of communication, deep relationships and friendships, able to fend for themselves and keep themselves safe from rape and abuse, not at risk to die from seizures, wandering, abuse and forced drugging in institutions once their parents are no longer around to care for them; not at higher risk to die from mitochondrial-mediated cancers and autoimmune diseases; able to eat without experiencing pain or brain swelling.

Autism and Asperger's Should NOT be lumped in together

Henderson - Oh yes it IS that simple.

I'm sorry that you feel the way you do, but no possible value can come from lumping those who cannot care for themselves in with people who can't seem to shut up about how independent they are. It's confusing, and the misconceptions can be disastrous for those in desperate need. Asperger's, in spite of how difficult you think your child's life may be, is NOTHING compared to what many others are dealing with. When you have to visit your son in a group home, and see him covered in bruises and his own feces, THEN you can talk to me. Otherwise, missing a few social cues, some ocd, along with a few other minor issues doesn't even put your son on the same PLANET as my son.

Y'know, I used to think these people had value for my son. I used to think that what they had to say was a glimpse into what my son might be thinking. No. My son is nothing like Ari Ne'eman. Even though he cannot speak, I have no doubt in my mind that my son wants me to help him overcome his obstacles in any way possible.

I do not want or need these sociopaths speaking for my son, period.

The author of this piece, Kim Stagliano, has THREE SEVERELY AUTISTIC DAUGHTERS.

Can you even begin to fathom what those girls will have to deal with later in life? The odds are they may not be able to care for themselves. The odds are they will be abused, and since they're women RAPED MULTIPLE TIMES over their life. The worst part is, even if they CAN tell someone about it they have less than a 20% chance of someone believing them and taking action.

I hate to be divisive, but the gloves have to come off. These whiney parents and adults with "Asperger's" are getting to be too much. Compared to Kanner's autism, Asperger's, again by comparison, is a hangnail. Yet, you people can't seem to STOP TALKING and trying to speak for people of whom which you cannot possibly fathom what they're going through.

Yes, we do need more distinction between autism and Asperger's. Dire need. The two need to be separated for the good of all those involved, especially those who can't speak for themselves.

Even Autism Speaks Agrees

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

Amy C

@ Meg Naughton

Ignorance is truly a disability you should have cured. Calling people names? Really?

So how do you handle it when people call your kid a retard? You ok with that? Oh or is just MY kid and those like him (like Ari) who are mentally insane and retards?

Oh wait, I think I get it...If I'm not WITH you I'm the anti Christ, right?

Get a life


It is ridiculous to say that Asperger's and HF autism should not remain on the spectrum. The fact that so many parents here have children with both asperger's and autism should tell you that it IS the same but at different degrees of functioning. Not to mention, many kids with HF autism started out as affected as the lower functioning kids and, for whatever reasons, got better.

Should we tell all those kids that are doing so much better that they get tossed out simply because they improved?

My son, like Henderson's, cried to me as well knowing he was different and didn't want to be. But he looked just like yours when he was 2 years old, and 3 years old and so on. He got better as time went on and for that I am grateful. But reading the criteria of autism...he fits it too. Does it look different than a more affected child? Of course. But that doesn't mean it isn't autism anymore.

There are many degrees to many illnesses and disabilities. Cerebral Palsy may leave someone in a wheelchair. Others may be able to walk with a brace or a walker of some type. Because the one who can speak and walk and enjoy life make it less cerebral palsy? No. It just means they were more fortunate.

My son wanted to get better. Mostly though, he does want acceptance. It doesn't surprise me that many people who have Asperger's want that, nor does it surprise me that they argue for the neurodiversity group. They lack experience with more affected kids.

I can understand the concerns people have with this man's appointment and I fully support airing those concerns. But, let's try to remember that some of these HF people fighting "their" fight are on the spectrum and, therefore, perhaps don't have the insight or ability to empathize with your situation (DUH). But that should not open to door to calling them names like "wacko" or "insignificant little turd" because their opinion, formed by an autistic mind, doesn't agree with yours. Especially at the same time as apologizing to parents of high functioning kids who have to fight that exact type of bullying our children regularly endure.

Argue the points. But leave the insults out of it. Frankly, there is nothing more upsetting to me than the thought my HF child may have to endure further insults as he gets older, particularly from a parent of a child with autism.


According to Ari Ne'eman, it's a choice between genetic tests/abortion and accommodation. Wow, if those were really the only choices, I'd choose accommodation too. Someone needs to tell this guy that children are recovering, whether he likes it or not. Oh, I see, people have told him. Of course, children who cannot recover should be accommodated.

Ari is either dishonest, or not intelligent enough to hold this position.

ellen j

I really find it offensive the remarks that have been made about Ari (the ones calling him a turd, wacko and the like). Just because you many not agree with neurodiversity or acceptance does not make those who do believe in those values mentally ill. Name calling doesn't help the Autism community. Shame on all of you, instead of trying to thwart Ari's nomination you should be celebrating that there will be an Autistic voice serving on the NCD. Wow.. I'm surprised that you all didn't object heavily to John Elder Robison's joining the Autism Speaks Board. According to your way of looking at Ari and Temple, Robison is not the right flavor of Autism either. Oh wait, he's now somewhat affiliated with your group so he's okay because maybe you think he agrees with you. Guess what- he's for acceptance and for services and supports just like Ari.

Ari has never said he's against treatments that will make life easier for those on the Autism Spectrum, he's just pointing out something you all don't want to hear and that is: just because you may think your child has become "normalized" he's still Autistic, he's just been given the tools to be able to function. We should be focusing our research $ in that direction rather than the elusive cure you're all seeking.

I would like to reiterate, word for word what Amy said above:

"Dislike! Ari is not 'anti cure' he's anti throw millions of dollars into research of autism while our kids suffer from abuse by society!

Besides this, the NDC has no say in how funds are spent.

This is just pure venom by those who think our kids needs to be eradicated. Shame on anyone who thinks their kids are better than others. Shame!"

Ari is not anti-treatment or for anti-normalizing which so many of you claim he is- he is for putting money into making sure that the services and supports are in place for all of our children, whether they be the Asperger's flavor of Autism or the more severely affected flavor of autism. Ari can speak better for your children than you can because in spite of your insistence that he has no idea what it is really like to be autistic, he does because Aspergers does indeed share the core characteristics of autism, only to a different degree. He's Autistic, and Autistics should be having a voice.

You all should be celebrating that there has finally been a person with an ASD nominated to the NCD instead of blocking his appointment. Getting the voices of our Autistics heard in as many places as possible is important.


Hi there Alane and "Autism and Asperger's Should NOT be lumped in together."

Alane - Thanks for your kind words. Don't worry, I paraphrased the conversations - my point really was he doesn't want to be on spectrum. We try to support him and how wonderful he is every day.

"Autism and Asperger's Should NOT be lumped in together" -

It really is hard not too lump them together.

My son was clearly autistic once upon a time (regressive at that). He has: energy issues, fat oxidation disorder issues, mito issues, bowel issues (that we spent a fortune on getting to one of the big guns), EXPLOSIVE head overgrowth, a clear fever response, unexplained histamine rashes - that signal a worse day, gluten/dairy issues, he should be on GAPS but I am too exhausted at this point, he's a huge responder to the biomed/all sorts of therapies.

He's been in many social skills groups over the years. These children in his groups (I know about 30-40 at this point) have the following diagnosises:

ASD, Asperger's, HFA, PDDNOS, Autism, and a few - once upon a time - severe autism (and their parents are NOT losing this diagnosis, as they get so much more from the government and they will never see the doctor again).

What was more significant - which doctor they saw and when that doctor went to med-school/that doctor's bias.

Or, what YEAR their child was diagnosed. I've met some pretty LOW functioning "Asperger's" kids. What's the doctor going to do? Slime all his colleagues/open them up to lawsuits - who let this child slide through the system? It is so much easier with these parents (many who have been in denial all these years) to just say Asperger's. It's BS, but it happens. Now, I've met some very high functioning Asperger's 8 year old diagnosises as well.

It is not that simple - dividing Asperger's from Autism. That's the problem with the Asperger/ASD/PDDNOS/Autism/HFA diagnosis.

I would prefer ASD - with the subtype being HF.

Meg Naughton

Am I misunderstanding what Ari is desiring? A test so that children with Autism can be destroyed in the womb? How is that advocating for kids with Autism/Asperger's syndrome?
Please tell me I misunderstood what was printed.

Autism and Asperger's Should NOT be lumped in together

Now that the mentally ill have chimed in, I rest my case.

Anyone who has ever hear Ari speak, or read his writing, knows that wacko is about preserving autism as "the new gay". Something to be embraced and accepted, rather than treated and cured.

This kid needs to be publicly discredited, AND humiliated. The public, as well as our politicians, need to realize that he only has two types of supporters. Other mentally ill persons, and those taken in by their rhetoric.


Henderson? How sad that your child is crying about being "different'. We are all different and that is part of the beauty in this world. We are all different. Help your child to not be ashamed of his differences that make him unique.


How is Ari not "pro treatment"? A simple factual answer will do.


If Ari Ne'eman is the representative of the Autism crisis then there would not really be a crisis. To those who are not part of the autism community or have an understanding of what is truly happening, the nomination of Ari Ne'eman as the representative of the Autism epidemic cast an entirely different picture of the problem. What's the big deal...he can communicate well, live independently and become a tax paying citizen of society...why he's even a sharp dresser! Since you can't really make the real problem go away, let's just make it look good. I have one of each and they are worlds apart...I am not nearly as worried about my son with Aspergers, however my daughter's autism diagnosis keeps me busy 24/7 with no option to be sick, tired or done. Ari you may represent my son well but you don't have a clue about the real problem and the real problem is what will bring us to our knees no matter how good you make it look.

Amy Caraballo

Dislike! Ari is not 'anti cure' he's anti throw millions of dollars into research of autism while our kids suffer from abuse by society!

Besides this, the NDC has no say in how funds are spent.

This is just pure venom by those who think our kids needs to be eradicated. Shame on anyone who thinks their kids are better than others. Shame!


I have Non-Verbal Learning Disability, which is similar to Asperger's. My son has moderate Autism. His development was stalled for 3 years, and he has made leaps due to EEG Neurofeedback. In 3 months my son has gone from an aggressive, minimally verbal, incontinent 7 year old to a toilet trained child who engages in pretend play for the first time in his life. He now asks and answers questions and if things continue at this pace he will move into the HFA category before long. Would Ari disagree with this treatment because it makes my son "less Autistic"? Seriously, this is an honest question? Are many of the problems between parents and ND really just a matter of semantics?


Oh - wanted to add - I pulled back one from the brink of joining the neurodiversity movement.

My husband's colleague's son was recently diagnosed with Aspergers (about 26 years old). We always suspected it wasn't "just ADHD" but that's another story. This young man was VERY relieved (with his new understanding re: himself) and VERY interested in all things aspergers - and couldn't wait to talk to us. We talked all night long about his story (psychology cognitive work starting as a young child, ADHD drugs, his hard work, his parents hard work, etc.). THEN he was going on about neurodiversity - and this is a "different way of thinking" garbage.

Whoa there Nelly!!!

I pulled out my stats on EVERYTHING likidy-split (everything skyrocketing - not just ASD, mito, type-1 diabetes, you name it). I reminded him re: his own story. I reminded him that he can function (even if he's on his 7th year of undergraduate school - as he keeps changing majors - failing half his courses, acing the other half) and many (if not most) people on spectrum could only dream of being so lucky. That HIS parents weren't insane to try to help him - that it would be insane NOT to try to help your child. A type-1 diabetes child is NO DIFFERENT than our children. Their systems are buggered; we must help them.

YEAH! Pulled back from the brink. He got it.


Quit whining about Ari already. So, he has Aspergers' and not classic autism as his dx. So, he is not a "cure" person stuck on research for causes, cures and preventions like Age if Autism is.
You say you are for treatment and progress- SO IS HE. Aren't we all?
So what is your real problem with Ari's appointment? I would love some real and raw honesty here so we can quit the inner bickering and get some real progress made already. Is that not on your agenda?


My son is very high functioning.

He first asked in first grade why is he different than the other children? I answered "because your brain is a bit different sweetheart." He cried and didn't want to talk about it. Second grade: "Mom, do I have autism?" (I don't hide the word). Me - "Yes honey, you do. Do you want to talk about it?" Again, no. Then a few weeks later, he approached the subject again (while weeping), "Will it go away? Will I get better. I don't want to have this. I don't want to be different."

My son wants help.

I will fight for him. I will fight for EVERY child. You are my sisters and your children are my children too. It is a village - this is my village.

Autism and Asperger's Should NOT be lumped in together

I honestly can't believe this insignificant little turd has come as far as he has. My guess is he's had some silent partners in his rise to the podium, with dubious intentions.

Honestly, and no offense to those that have children with Asperger's, but there needs to be a clear and defined separation between the two dx's.

There is no value in have a group that might miss a few social cues being lumped in with people who cannot speak, wear diapers, or require 24x7 care. In fact, to consider the two as being under the same umbrella is harmful to BOTH sides.

Asperger's needs to be removed from the autism spectrum.

Why? Because people (outsiders) just don't know the difference.

It's like saying that pneumonia and the common cold are varying degrees of the same thing. We know that's true, because they're both respiratory issues, but most if not all people KNOW the two are definitely not in the same class.

The same cannot be said for Asperger's and classic autism.

I don't want these people speaking for my son, and to be honest, want them as far away from him as possible. That includes Ari, Temple, and all the rest of them. No matter what they have to say, I just don't want to hear it because it has nothing to do with my son and his issues.

If they want to speak for children with autism so badly, they should procreate, vaccinate, and hope for the "best". Stay away from my child.

A Mom

Good news.


Excellent points, Kim. I wish it was John Robison that got nominated to the council.

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