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.