When I think about autism, I think about kids on the spectrum. Almost everything I read about autism is about what causes it (in kids), how to prevent it (in kids), and how often it’s diagnosed (in kids). In a way, the media’s focus on what causes autism exposes a kind of a blind spot parents have — or at least I have –as a parent. Every day I try to lay the groundwork for my kids to grow into healthy, content adults, but the fact that that will actually happen is almost inconceivable.
That blind spot may be one of the many reasons why so few articles talk about what happens when autistic kids grow up. Be that as it may, the needs of people with autism — the support, services and community they require as children, adolescents and adults — are what drive Ari Ne’eman to be an outspoken advocate for those on the spectrum.
Ne’eman, who 22 was appointed to the National Council on Disability, is the first openly autistic White House appointee. He’s controversial, and he’s committed to working for the right of people with autism to live in a neurodiverse world free of the kind of pity that too often attaches itself to the diagnosis. This interview in Wired shows just how important it is to talk about the fact that autistic adults aren’t necessarily interested in a “cure” for who they are and how their brains works. (Hat tip to Marjorie Ingall for the link.) In it Ne’eman says:
“Going back to the dark days of Bruno Bettelheim and “refrigerator mothers,” the focus of the conversation has been on placing the blame for autism, and on trying to make autistic people something we are not and never can be: normal. This focus on a cure has prevented us from actually helping people….”
At the end of the interview, Ne’eman says, “Instead of trying to make autistic people normal, society should be asking us what we need to be happy.” When it comes right down to it, isn’t this what each of us tries to do for our own kids, no matter their strengths or challenges?
Photo: Paul Morse/Wired Magazine