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

Posted Jan 26 2010 12:00am

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.

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.



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