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Tuesday, January 4, 2011

Who Speaks for Autism?

Lisa Jo Rudy writes:

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.

She notes that Autism Speaks has put a person with Asperger's on its board. But advocacy by people with Asperger's or HFA, she says, creates controversy of its own. In some cases, the reason is political.

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.