AANE’s Zach Michaels sits down with NeuroTribes author Steve Silberman. His favorite moments are excerpted below.
Supports and services are not causes and cures
Silberman’s interest in autism and the research surrounding it was sparked by the surprisingly enduring impact of his 2001 article, The Geek Syndrome. Typically interest in a magazine article disappears in a day or two, but ten years after the publication of this article he was still receiving emails. Silberman was also struck by the content of the emails. Those writing weren’t worried about what causes autism, “which is the huge national obsession.” Adults expressed concern about employment and parents worried about what would happen to their child once he or she aged out of services with high school graduation.
“What I discovered was that the national agenda is very much oriented around research into causes and potential cures of autism, but what families were really struggling with had nothing to do with causes and cures. They were struggling with the lack of services and supports. And, autistic people themselves were dealing with bullying, being excluded from the job market, generally feeling they were stigmatized in society, they were further stigmatized by organizations that kept insisting that autism was an epidemic.”
Autreat: seeing beyond the misconceptions
One of the first things Silberman did to start his research process was to go to Autreat, an autistic retreat center designed by autistic people for autistic people. He watched autistic people just hanging out, not in a clinic, just being themselves with each other. In this setting he got a strong taste of what it was like to be a neurological minority. His real, day-to-day experience brought home how wrong the pervasive stereotypes were. Autistic people were highly empathetic. There were constant expressions of humor and irony.
“When NT’s [neuro-typical’s] look at autistic people they often just see their own prejudices rather than the people in front of their eyes.”
Research and funding: three areas starved for attention
Silberman advocates for a different balance between the funding for autistic genetics research and funding to relieve suffering and support the lives of autistic people. He cites, for example, the need for research into the potentially fatal seizures autistic people can have. Three areas for autism organizations to focus research on: 1) improving the quality of life for autistic adults; 2) women on the spectrum; 3) autism in minority and impoverished communities.
“The idea that we could prevent autism or eliminate it from gene pool .. has potentially very grave consequences for our society because one thing that is clear is that autism is a sort of fellow traveler in the human gene pool with certain forms of intelligence and aptitude.”
Pop culture and autism
While careful not to make unsupported assertions of an individual being autistic, Silberman talks about key contributions you might not have thought about. He cites the invention and impact of ham radio in the first decade of the 20th century to rockets, science fiction and the creation of fandoms. But do autistic people escape and squander their opportunity to be more connected if they become immersed in genre fiction?
The neurodiversity movement, gays and gender queer
Silberman cautions on making too much of any metaphor between gay experience and neuro diversity, but does believe that gay people may have a perspective on being bullied, stigmatized and outside of society that is useful when looking at the evolution of the diagnosis of autism and the emerging autism rights movement. He finds the intersection of autism and identifications of gender non-binary and gender queer in young people an intriguing area for “collective consideration.”
“Is it that autistic people are immune to socialization and thus they are free to experience their gender non-binaryness or their gender queerness? Or is there something about autism that encourages people to be that way? .. another area where we’re just beginning.”
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