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Wednesday, March 25, 2009
Yeah, that Peter Bell. Currently of Autism Speaks and formerly of Cure Autism Now. He seemed like a nice enough guy, and he certainly seemed like someone who was only working for what he thought was best for his sixteen year old son.
However, I still have such mixed feelings about Autism Speaks. I'm not going to condemn them for wanting to cure autism. I know plenty of adults on the spectrum who would, but I also know plenty of parents who don't think of "curing" as completely getting rid of what makes their children unique and quirky. I'm not going to condemn them for being an organization aimed at parents or for doing research on genetics. I think there's room for all of that.
They sent me a 100 Day Kit, which really was helpful. They send money to state organizations that do help with education. They lobby for insurance reforms. They do a lot of good.
They also do a lot of harm. Their weaselly statement about the Omnibus decision was really stupid. It didn't accurately portray the nature of the decision, and the statement that they're going to continue to fund research into vaccine-autism links makes me think they'd be wasting money on pointless research instead of advancing science.
I also don't like that "biomedical" has become a code word for "quackery." Parents end up spending a ton of money on treatments for their children, and if Autism Speaks offers them the same level of clear information that they did with the whole Omnibus statement? Hooboy.
So, yeah. I have mixed feelings.
at 11:19 AM