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.
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.
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
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.
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.
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.