Over the years, there's been plenty of debate about who should speak for autism.
Of course, there's the massive non-profit called Autism Speaks, which for years has placed itself in the position of autism's spokes-organization. Through a variety of ads, events, press conferences and star-studded fundraisers, Autism Speaks has worked hard to be "heard" by the entire world. Unfortunately, not everyone agrees with the tone, style or content of the Autism Speaks message - which over time has included tear-inducing videos and high profile squabbles within its founding family.
For many years, Autism Speaks spoke for autism without including a single individual with an autism spectrum diagnosis in its collective voice. Today, after much pushing from various constituencies, Autism Speaks now includes at least one adult with autism on its board. That individual, John Elder Robison, is diagnosed with Asperger syndrome. He's a very successful author, and an articulate speaker.
John Elder isn't the only "Aspie" to speak for autism. Ari Ne'eman, another very articulate individual diagnosed with Asperger syndrome, now represents the autism community on the President's Council on Disabilities. Ne'eman is the founder of the Autism Self-Advocacy Network (ASAN) and a well-known activist on behalf of the rights of individuals on the autism spectrum. He's also a controversial figure because of his views on "neurodiversity" - the perspective that autism is just one of many different ways of thinking, rather than a disability or disease to be cured.
Many are delighted to have individuals with autism speaking out for the autism community. But there are many, too, who are concerned or even angry. In some cases, the reason is political: some people disagree with the agendas presented by Mr. Elder and Mr. Ne'eman (though it's important to note that their agendas are by no means identical).
In other cases, the reason is personal: parents with children who are severely impacted by autism feel that the entire autism spectrum - not just the high-functioning end - should speak for autism. If their children, many of whom are non-verbal, can't speak for themselves, then parents should speak for them. There's a serious concern that those with the most serious issues and greatest needs won't be heard if "autism" is represented by highly articulate individuals who have done as well for themselves as almost anyone without the disorder.
Who should speak for autism?
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Addendum: John Elder Robison wrote a response to this blog in which he describes his views and positions on "speaking for the autism community"
and much more. Please check it out!