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Autism Action Network Requests Clarification from Ari Ne'eman on Views for Nat'l Council on Disability

What about us Managing Editor's Note: Recently, John Gilmore, of the Autism Action Network, formerly A-Champ, sent a letter to Ari Ne'eman of the Autistic Self-Advocacy Network, requesting clarification on his views as they relate to his seat on the National Council on Disability. As the mother of three children whose autism means severe limitations on their ability to care for themselves (let alone advocate for themselves) I thank John for asking Mr. Ne'eman if his inclusion on this council will include advocating for all people with autism. John says,  "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."

See Mr. Ne'emans response below. John's letter follows in full after the jump. John speaks for many of us who are concerned that Mr. Ne'eman is not willing to respond to the questions prior to his appointment. 

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.

Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org

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.

Sincerely,
John Gilmore
Executive Director Mr. Ari Ne’eman
President
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.

 


Sincerely,

Comments

BJ

Jake Crosby -- your comment is getting a standing ovation here! We couldn't have said it better ourselves, or agree with you more.

Darian (nickname)

To Allison and Nancy, thank you so much for responding!!

I really don't think he realizes what it is like to be on the other end of the spectrum. If he did, I don't think he would say the things he does. As a rule, usually aspies only understand one side of things, thier own! That is not a critism against us, but an observation.

THis idea that things would get better if people were nicer is very child like. It reminds me of a House episode were he quoted "and we shall cure all the world's ills with sunshine and puppies!" LFA is as different from asperger's as Breast Cancer is from a cancerous brain tumor!

And we really need to recongnize this! Our parents are not up all night wondering what will happen to us when they are gone or who is going to take care of us! My mom never has to contimplate whether or not I need to be in a home due to overwhelming medical costs and time!

I really think that this all started when Aspergers was considered part of the Spectrum and we were called autistic. Not that we don't have the tendencies, but now everytime an aspie hears the word autism, they automaticly asume that people are talking about them!

And so you get anger like we have seen in the vaccine debate (of course an intelligent Aspie doesn't want to think they have brain damage!!) and the aftermath of the I Am Autism scandal.

It doesn't really sink in that when people talk about autism, THEY ARE NOT TALKING ABOUT US!!!! They are talking about the kind of autism I talked about in my last post. The kind that does need constant care!

The sooner that gets sunk in to my fellow aspies brains, the better!! This isn't only about US! There is an entire Spectrum of people here, and most of them will not be able to reach the level that we have. And these people need our help, and so does thier care givers.

*my rant is over*

Tired of neurodiverse bull!

"Start making phone calls asking for a hearing in which Mr. Ari Ne'eman is forced to go on record answering these question BEFORE his confirmation vote"

zepherblitz@yahoo.com

Email =
help_comments@help.senate.gov
for National Council on Disability /
Committee on Health, Education, Labor and Pensions

MAKE AUTISM STOP

Jake Crosby

For a person who frequently accuses others of misrepresenting his own viewpoints, Ari sure is silent when asked to clarify his positions.

He alludes to avoiding "public appearances" and talking to the "media" as excuses to avoid answering questions posed to him by the community he would represent if his nomination was confirmed by the Senate.

Even if the white house did advise him to only respond to senatorial questions, so what? His putting bureaucracy before the autism community utterly destroys the point of his nomination in the first place.

Not surprisingly, his response has proven my worst fear correct:

He does not represent the autism community.

Nancy Naylor

Darian,
I wanted to tell you that I think your post was brilliant and heartfelt. I've copied it for reference the next time someone tells me that I have to accept my daughter and then I'll realize that I "wouldn't want her to be any other way." Thank you for illustrating the problem so vividly.

julie

I agree with thought criminal.
Anybody working with the government is part of the cover-up. That includes the IACC. No help there, just more harm.

bensmyson

Has Ari Ne'eman really been diagnosed with autism? What kind of kid was he? How much therapy has he had? What kind? Who are his parents and do they talk about how proud they are of him? Any one from his old school or neighborhood speaking interviewed?

If this guy is somebody that has other issues besides autism then shouldnt we find this out?

Im only asking because I know absolutely nothing about him other than blog posts and boiler plate news stories and it seems every time his name is mentioned sneaky snakes come out of the woodwork.

Thoeore M. Van Oosbree

If my sons ever learn to talk, to understand a complex sentence, to dress themselves, to brush their teeth, or to wipe their bottoms I will happily explain to them the blessings of neurodiversity.

Bad Apple

When I stood outside of the House of Blues a few years ago, politely asking people on the sidewalk “would you like information about vaccine safety”, I spoke to a woman who had helped organize the event for Autism Speaks. I believe it was Ms. Goldberg, the local chapter president, but I'm not positive as we'd never met before. After she told me to leave or they would call out the police and have me arrested (because, I was told, I was spoiling their evening), she asked me if I had any children with autism. I couldn't honestly say 'yes', as none of my children are diagnosed on the spectrum. She meant to imply that because I didn't, I couldn't possibly understand what it must be like to have a child who's diagnosed on the spectrum. And yet, I feel that I do have some grasp.

I know the sick feeling of having a preschool teacher say “I believe that your child needs help that we're unable to provide”. I know what it's like to watch your child finish up the second of two ten day rounds of antibiotics, and suddenly be overtaken by what can only be described as constant hysteria. I know what it's like to watch a child who won't play with the other six year olds playing baseball across the street, but instead sits a hundred feet away and just watches, rocking back and forth, back and forth. I know what it's like to have a child who experiences a bowel movement every ten days, and then screams when it finally happens, and has to be given an enema to avoid recurrences of this. I know what it's like to have to clean up the stairs because when she finally can't hold back any longer, she also can't make it to the bathroom on time. I know what it's like to ask your four year old child a question, and get nothing in response except your question echoed back. I know what it's like to think “she's not being a smart ass, it's something else, something worse...”

I know how it feels to finally have a gastro intestininal specialist say the words you've been dreading for months --“your child might have autism.”

My child was never ultimately diagnosed. I don't know if it's because I put her on a casein free diet for around six months at age four, or because she just outgrew the behaviors. I don't know if it's because she really did qualify for special medical and education treatment, but our HMO and school system just didn't want to put forth the effort to provide this. I've been told that normal is just a setting on my clothes drier, but I know this-- “your child has autism” is nothing that a normal parent wants to hear. No matter how severe or mild it might be.

I also know this—Ms. Goldberg can't claim to really know what it's like to have walked in my shoes or my child's, any more than I can claim to know what it's like to have walked in hers or in her child's. But the only way to try to understand is by engaging in debate. To that end, I think that words like “leave or we'll have you arrested”, don't really help matters much. Nor do words like "Regrettably, they've asked that I avoid answering any questionnaires not provided to me by Senate offices as part of the confirmation process."

I can't claim to speak for all on the spectrum or for all of the parents with children on the spectrum. But I really don't like the idea of this man, who refuses to speak without first being given permission--who refuses even to acknowledge that autism is indeed a disability and a horribly serious one for so many-- I really don't like the idea of this man being given a position on the National Council on Disability.

So much for transparency.

AnaB

Yeah, this is a mess. Someone with his views influencing policy that affects my son, who is ravished by medical issues and will likely never live independently, that just scares me. Seems to me like Roger Culp, Jake, Sue Rubin, or Jonathan would have been a more appropriate choice given they understand the struggles our children face, as well as the adults. ND is convenient for the govt. to ally themselves with....I mean here is the govt. who implies autism is not increasing, that it has always been around in these numbers and there's ND who does not support research...if you don't research you don't find answers...a convenient marriage.

jen

How galling for you all to have such representation! Someone who is supposedly from "your camp" but who obviously has no clue about what children with autism (and their parents) are having to deal with. Mr. Ne'eman will need to open his eyes.

Tired of Spunk

The White House has told him not to communicate? Really?

Would that be Obama's call?

Seriously? The White House? And the Senate? Who the hell is pulling all these puppet strings.

I'm sure we can all guess why he is waiting to voice his unpopular opinion. Because if he speaks it too soon his appointment is at risk as are the reputations of those who support him.

You can't make this stuff up.

No disability? Okay-- no disability payments

I'll repost the Ne'eman quotes which Mr. Doherty posted in a comment to another site. Ari Ne'eman wrote:

“Difference Is Not A Disease”

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

…….

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

http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=2

Allison

Darian, There are moments where the full weight of autism hits me and an emotional fall out ensues. One of those moments is now while reading your comments. I ask that you send your thoughts expressed to us here to Ari. He needs to hear from his peers on the differences within the diagnosis. I once had an adult man who had just been diagnosed with Aspergers come to my house where he met my son. He was thrown for a loop as it was nothing like what he expected. There are many adversities that those with higher functioning autism experience, no question, however for others there is a completely different set of circumstances and needs.

For my son it is completely unacceptable to think that someone with Ari's views would be responsible for deciding what's necessary in terms of research. The autism those with higher functioning autism experience is one of loneliness, and pain, in desperate need to fit in and be understood. For lower functioning autism it's extreme continuous medical maladies effecting a much more basic functioning complications. My son also needs acceptance, however much more so, he needs someone to champion the answers to the unending medical hurdles he faces every day.

Wade Rankin

Thanks John, for such a measured and reasonable representation of what so many of us felt when we first heard of this nomination.

Google Elf

I have this feeling of deja vu...

"Other members of the H.E.L.P committee are
Republicans by Rank

Michael B. Enzi (WY)
Judd Gregg (NH)
Richard Burr (NC)"

Oct 19, 2005 ... Fisher says that, "if the Burr bill passes, all economic incentives to insure mandated vaccines are safe will be removed and the American people are facing a ... Senate Health, Education, Labor and Pensions Committee Chairman Mike Enzi (R-WY), and Senate Budget Committee Chairman Judd Gregg (R-NH), ...

http://www.usautism.org/content/PDF_files_newsletters/101905_special_edition.pdf

Nobama

Just love the "transparency" of this administration.

John Hemenway

The senate committee with oversight for the confirmation of appointees to the National Council on Disability is the Committee on Health, Education, Labor and Pensions - 428 Senate Dirksen Office Building
Washington, DC 20510

It is chaired by Tom Harkin (Democrat-Iowa) and the ranking member is Michael Enzi (Republican-Wyoming)

Their website is:
http://help.senate.gov/Subcommittees_index.html

Other members of the H.E.L.P committee are:
Democrats by Rank

Tom Harkin (IA)Christopher Dodd (CT)
Barbara A. Mikulski (MD)
Jeff Bingaman (NM)
Patty Murray (WA)
Jack Reed (RI)
Bernard Sanders (I) (VT)
Sherrod Brown (OH)
Robert P. Casey, Jr. (PA)
Kay Hagan (NC)
Jeff Merkley (OR)
Al Franken (MN)
Michael Bennet (CO)

Republicans by Rank

Michael B. Enzi (WY)
Judd Gregg (NH)
Lamar Alexander (TN)
Richard Burr (NC)
Johnny Isakson (GA)
John McCain (AZ)
Orrin G. Hatch (UT)
Lisa Murkowski (AK)
Tom Coburn, M.D. (OK)
Pat Roberts (KS)

Start making phone calls asking for a hearing in which Mr. Ari Ne'eman is forced to go on record answering these question BEFORE his confirmation vote, which may be as early as
Committee: Senate Committee on Health, Education, Labor and Pensions
Date: Wednesday, January 27, Time: TBD
Place: TBD
at which they are acheduled to vote on nominations cleared for action.

K M

If the Federal Govt doesnt wake up to the reality that some treatments improve the lives and outcomes - this guy is going to COST the feds $$$.

They need to know that.

K M

So who do we write to to suggest denial of his appointment?

Dadvocate

If Ne'eman won't comment, perhaps the White House will. I sent them (President Obama, Kareem Dale, and Mike Strautmanis) a detailed and strongly worded objection to this nomination, highlighting that Ne'eman's radical views are on autism medical research are inconsistent with the Administration's own stated policies and the overwhelming majority of stakeholders in the autism community. I know others have objected too.

It appears that whomever is supporting Ne'eman within the Administration is trying to effect this appointment under cover of darkness by "gagging" him, although he felt free enough to offer a bit of sleight of hand here: http://autism.about.com/b/2009/12/17/ari-neeman-neurodiversity-champion-named-to-obamas-council-on-disability.htm

The notion that this nomination is OK because Ne'eman is mainstream on lifespan, inclusion, and safety issues and this body has nothing to do with research priorities is naive. Once embedded in a "key administration post". Ne'eman will be able to spread his wings to other boards, committees, advisory groups, etc. and have unfettered access to legislators and policy makers to market his extreme agenda.

Darian (nickname)

I use to believe when I fist started out that I could speak for all on the Spectrum because I had Asperger's. I thought truly, and honestly, that I understood what people along the spectrum were going through.

When I got my job with the Department of Mental Health, I got a wake up call!! Though there are surface simularities, it is not nearly as extreme as in the case of LFA.

When I first started, they had be visit the habilitation centers. I came across individuals with the incompacitating kind of autism! The kind that never allowed the sufferer to learn how to walk, or to be potty trained.

The kind that at times can look catatonic and at others attacking staff for no reason. The rocking back and forth drooling, looking at the space next you and with a half hum half scream of "mmmuuuaaahhhh MAAAA! MUUUUUWAAAAAAHHHHH!!! AH AH AHA MWAHAAAAAAAA!!!!"


I remember only be able to be around for thirty minutes for the first time before I sought refuge in the bathroom and cried and cried and cried with all my soul and might! I didn't know! I never saw anything like that before!

I cried and cried, terrified by the thought of them being trapped inside themselves. What if there is a consious part of thier minds that is trapped, burried beneath all of that, and they can't get out!! Trapped inside yourself with no way to communicate and come in the world.

Overwhelmed by sensory that you can not move away from. That total lack of any control over themselves and any ability to get across the simplest thing they want. Being in so much misery and mental pain that they beat themselves with thier own fists!!

Screaming while they do it. And the grand finale of an aid having to chase one of the clients who just dropped thier shorts and went to the bathroom right on the floor, screaming while doing it!

Maybe this is an extreme case, but it was the first time I realized that though I can and do speak for those like me and our issues, I have no idea what it is like to go through that, or what parents have to do to take care of children who need such a high level of care.

Perhaps some of these NDs need to go and see with there own eyes what I saw. See the misery, and think about what it would be like to be trapped like that. Then perhaps they will come to understand that we have more in common with NT's than we do with those with LFA.

We can advocate for proper and better supports, and for a cure for such indivduals, but we can't claim we understand them! I learned that first hand! We can advocate for services for them, but we can not claim that we speak for them! And it doesn't take a rocket scientist to figure out watching them that they are not happy with what they have!

My fellow aspies have got to realize that many parents on here would jump for joy to have thier child be able to reach the point that people with Asperger's reach! They would praise God without end if there was a way that they could go as far as Ari and those like me have!

But untill there is a cure, the reality of what I saw at that place is all to common place. And no, we DO NOT understand what it is like to go through what they do, and we have GOT to stop claiming that we do.

thought criminal

Sigh - Is there anybody left who doesn't believe that there is a cover up going on.

samaxtics

It's quite sad really. I bet Ari was dead chuffed to get that position, feeling quite important to be picked amongst many. Not even confirmed yet and he is reduced to raising his hand to ask permission to go to the bathroom. No wonder he was so attractive to the government; so compliant and will save the government from having to spend any money on people with autism.

TexasDad

"Regrettably, they've asked that I avoid answering any questionnaires not provided to me by Senate offices as part of the confirmation process."

Well, that's interesting. Who is on that committee?

Harold L Doherty

Mr. Ne'eman dances on the head of a pin by claiming that autism is only a socially created disability, not an actual medical disability or disorder.

Teresa Conrick

Thank you, John and all who continue to ask these questions that are so important to me as well. Being diagnosed at age 12 with Aspergers is light years away from my sleeping, nonverbal, 16 year old daughter who has no voice in any of this. If her health and medical issues were not addressed, she would not be sleeping. Years of vomiting, diarrhea, reflux, nosebleeds, biting, head-banging and I could go on but trust me that it was not a life, but some sort of sentence that put her into a prison from which there was no key. That was her life before treating the pain -- physical and emotional pain that she has endured for years.

I am not the only parent who has witnessed the disappearance of health, speech, joy, -- a pain-free existence -- due to vaccination. Our children deserve a life that incorporates these basic building blocks that nature had intended instead of this detour called autism. Please don't stop pursuing these answers from Mr. Ne'eman. Thousands of kids are depending on it.

John Stone

I am puzzled: if Mr Ne'eman does not consider autism to be a disability on what basis is he being nominated to the National Council on Disability, and why does he think it appropriate to stand?

Of course, nothing is more disabling (or disenfranchising) than blocking any questions about his views while he is being confirmed: shocking and despicable arrogance of the Washington power-brokers.

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