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Friday, November 30, 2012

The Hearing

The House Committee on Oversight and Government Reform held its autism hearing yesterday (video of full hearing is here).  Autism News Beat live-blogged it here and here.

Anti-vaccine activists packed the room, as Dan Olmsted suggests at The Age of Autism:
The questions were tough and bipartisan -- from Republicans like longtime thimerosal foe Dan Burton (above, with Mark Blaxill) to Chairman Darrell Issa, who said no topic would be out of bounds as the committee continues to probe. Democrat Carolyn Maloney, who has tried to get a vax-unvax study through the House for years, gave 'em the what-for once again. And while I have seen Democratic Congressman Elijah Cummings on TV, I wasn't prepared for the common-sense and deeply troubled approach he brought to the proceedings. The look on his expressive face was priceless. His comment, "There's something wrong with this picture," may go down in history with gems like Jim Carey's "The problem is the problem."
Cummings pointed out the animated, frustrated faces of the audience, many of whom I know quite well. Their collective eye-rolling served as a great backdrop for the in-credible defense of the federal response to autism and vaccine safety worries. And while CDC-types consider individuals as little more than walking anecdoctal evidence, to elected officials they are the voters who put them there and can kick 'em out.
The Thinking Person's Guide to Autism was more skeptical about the hearing:
During the first part of the hearing, outgoing Rep. Dan Burton let thoroughly debunked mercury-autism and vaccine-autism causation pseudoscience theories fly, despite CDC representative Coleen Boyle's calm reiteration of actual autism facts and figures, and reminders that the CDC's 1 in 88 autism numbers point to underdiagnosis of existing autism numbers rather than a rise in autism rates. Several congressional committee members could have benefitted from reading TPGA's Mission Statement's primer on critical autism thinking & pseudoscience checklist before the hearing.
GRASP executive director Michael John Carley testified:
 Tone, and language may seem like pc-nonsense semantics to many, but not to someone on the spectrum who grows up having to hear words like “cure,” “disease,” “defeat,” and “combat”—words that have no medical basis given the genetic component of autism (for though we may improve dramatically, we’re born with this and will die with this) and given the harm these words cause there is also no ethical basis for their usage. Especially when the words come from not just misguided ad campaigns, but coming from people who might genuinely love us, people who use these words because they learned them from experts on TV . . . Such negative self-imagery makes self-esteem so much harder to achieve for an individual who is at a psychological disadvantage enough as it is. We have to remember that the vast majority of this population can read what is being written about them, and hear what is being said about them. And as everyone of us grows, spectrum or not, we need to hear about what we can do, not just what we can’t.
ASAN's Ari Ne'eman questioned research priorities, citing the example of a nonverbal young man he had met:
Members of the Committee: Why can’t we do better for him? Why can’t we give him a chance to communicate more clearly, to not only sit here and testify before Congress someday but also be able to tell his supporters and friends what he wants for his life, to tell his parents that he loves them and how important they are in his life? Some people say that until we unravel the causation of autism, that is impossible. That is quite simply not the case – Augmentative and Alternative Communication technology has existed for many years now and can empower even those of us who cannot speak to make their voices heard.
If we invested a mere one-tenth of the amount of money that we currently pour into causation into empowering Autistic people to communicate, that young man and hundreds of thousands more like him would be able to communicate their needs to us today. I am not here today to speak for every Autistic person – that’s impossible. What I am here for is to argue for every Autistic person to have the same opportunity to communicate that I have come to enjoy thanks to the support that I have been lucky enough to receive in my life.