No More Pity: The First Openly Autistic White House Appointee Speaks Out

Ari Ne'eman

Ari Ne'eman - photo by Paul Morse/Wired.com

Please read my exclusive Wired interview with the first openly autistic White House appointee in history, Ari Ne’eman. In December, Ne’eman — the 22-year-old founder of the Autistic Self-Advocacy Network — was nominated by President Obama to the National Council on Disability (NCD), a panel that advises the President and Congress on ways of reforming health care, schools, support services and employment policy to make society more equitable for people with all forms of disability. The appointment proved controversial, because Ne’eman challenges the agenda of well-funded groups like Autism Speaks, which focus on finding causes and cures for autism, while Ne’eman favors making changes in society that will help autistic people lead happier, more socially connected, and more productive lives.

It’s an extremely outspoken interview, ranging from the direction of autism research, to the need to develop new mobile technologies and social networks for autistic people, to the controversy over Ne’eman’s nomination, to his pledge to represent the broadest possible range of autistic people and their families on the NCD. Diagnosed with Asperger Syndrome at age 12, Ne’eman also talks with me about his own experience coming to Washington, the parallels between the neurodiversity movement and other civil-rights and disability-rights movements, controversial upcoming changes to the Diagnostic and Statistical Manual of Mental Disorders (DSM-V), and why autistic people need respect, access to services, and community more than they need pity or a cure.

How can I draw a line around one part of my brain and say that this is the autistic part, and the rest of me is something else? That way of looking at autism is predicated on the strange idea that there was or is a normal person somewhere inside me, hidden by autism, and struggling to get out. That’s not reality.

As a society, our approach to autism is still primarily “How do we make autistic people behave more normally? How do we get them to increase eye contact and make small talk while suppressing hand-flapping and other stims?” The inventor of a well-known form of behavioral intervention for autism, Dr. Ivar Lovaas, who passed away recently, said that his goal was to make autistic kids indistinguishable from their peers. That goal has more to do with increasing the comfort of non-autistic people than with what autistic people really need.

I started researching and writing about autism back in 2001, when I published an influential article in Wired on autism in Silicon Valley called “The Geek Syndrome.” I still get email about it every month, almost 10 years later. Many people have told me that they’ve printed out the article as a primer on autism for their family members. I’m also currently working on a book about autism and neurodiversity.

I met Ne’eman this summer at Autreat, an annual gathering for autistic people organized by autistic people themselves. Spending nearly a week with 85 autistic people as they created their own comfortable social space was a profoundly illuminating and challenging experience that I will talk about more in depth on this blog in the future.

Please read the rest of my interview with Ari Ne’eman at Wired.com. Thanks.

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12 Responses to No More Pity: The First Openly Autistic White House Appointee Speaks Out

  1. Pingback: Can Autism Really Be Cured? | Care2 Causes

  2. SV Aspie says:

    Ari Ne’eman is NOT saying that autism is not a disability. Rather, he is challenging the medical definition of a disability as a disease to cure and applying the social definition of a disability as a condition where a person needs special help and social acceptance to function in society. For example, instead of using aversion training to teach a child to make eye contact, even though this is intensely uncomfortable for the child (and giving the child medications to calm him/her down from the stress), the public can learn that some people are not comfortable with making eye contact.

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  3. autismrealdeal says:

    Autism is a life long disorder. There is also an epidemic of children misdiagnosed with autism who really have things like “fetal alcohol syndrome” or “fragile x” or “laundau kleffner syndrome (Jenny mccarthy’s son), “adhd” or “aspergers” or “PDD” that aren’t truly autistic, so it’s important to separate the non-autistics with the truly autistics, or we will FOREVER be spinning in a cirlce of confusion when it comes to research and treatment of authentic true autism. See cdfoakley channel on youtube for a look at what is probably the most authentic look at true SEVERE autsim seen on internet. Of course, there are other higher functioning autistics, but this channel gives researchers an insight into what severe to PROFOUND autism looks like. Very important. Extremely educational. And don’t forget cases like Donna Williams, the alleged “high functioning autistic” who for years wrote books about her HF autism, but now has recently been diagnosed with multiple personality disorder or Dissociative Identity Disorder Google: “blog.donnawilliams.net/…/losing-time-dissociative-identity-disorder-and-the-real-time-travellers” We have to be very CAREFUL who we call autistic and who we call other things, because it seems AUTISM has become a very popular label assigned to NON autistics, which actually HURTS the truly autistic population. Be careful. Know what autism is, and what it is NOT. Jenny McCarthy’s son was said to NEVER have had autism, but Landau Kleffner Syndrome. So be careful. As for John Travolta’s son, Jett, he was TRULY autistic and the public didn’t understand the PAIN or pressure this poor man and his family endured while trying to raise this child. This is WHY it is critical TRUE autism, especially autism with epilepsy is understood by PUBLIC. And as for autistics who suffer from constant self abuse, take a look at kgaccount or cdfoakly on YOU TUBE for a REAL look on autism and self injurious behavior. Be prepared to have your eyes opened. There are MANY things that HELP severely autistics, we need to understand how we can HELP these families, no matter what their income is….TRUE autism is a serious disorder that requires DIRECT support and help, NOT endless meetings, symposiums, research and seminars. These families of these truly autistic persons need DIRECT immediate SUPPORT and help. It is absolutely USELESS that a brigade of professionals run around “talking about autism” for years and years but don’t actually provide the supports neeed for families who are living with autism RIGHT NOW. Does anyone wonder WHY murder suicides among families raising severely autistic persons is RISING? IT”s because they are desperate for HELP and support. DO you really think another research project or seminar, symposium or meeting is going to HELP them right NOW? HELL NO. They need people to come into their home and HELP right now. NOT strangers who sit in far away places “talking about autism” or “cures to autism.” What a waste of time and energy!@ You want to help? Than talk to your politicians about providing MORE home health funding or RESPITE care to families who are dealing every day with severe autism and need respite or nursing care! That will help. Not a bunch of professionals sitting around in some 4 star hotel, doing “power point presentations” about autism.

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  4. Jason Ross says:

    This is a very good interview! I feel it really helps the world to understand the different and unique ways a person can think. There are many different types of people in the world, and in the world of Autism, it is no different.

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  5. jonathan says:

    Ari Ne’eman has been appointed to the NDC even though, as documented meticulously on my blog, autism’s gadfly, he does not believe autism is a disability. the IACC was developed to prevent and cure autism, so what is the point of Ne’eman being on that committee except to sabatoge it?

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    • Kev says:

      Jonathan – a bit of context may help. Could you relate exactly what Ari said and where he said it?

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  6. Pingback: Autism Blog - First Autistic Presidential Appointee Speaks Out « Left Brain/Right Brain

  7. Marc Rosen says:

    Great interview, but I wish you hadn’t mislabeled all of us from that Autreat ceremony as “teenagers”! At least two of us were in our 20s!

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  8. Barb says:

    Thanks Steve for the great Wired interview with Ari, well worth the read!

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