photo-Buddy Boy on a zip line
Tonight we went to a gymnastics event. It was a fundraiser for Autism Speaks (indirectly). The fundraiser was sponsored by Buddy Boy's school, who sponsors a team annually for the Autism Walk in our town each year.
The walk used to raise money for NAAR (National Alliance for Autism Research). NAAR is one of the organizations that Autism Speaks has merged with/absorbed. Thousands walk each fall in the annual Autism Walk, and it's a big deal. Teams walk and raise money thru pledges and other events, such as the one we attended tonight. Now that NAAR has been absorbed into Autism Speaks, the money goes to them to sponsor research.
Like many, I don't feel that "Autism Speaks" for me. They propagate a message that portrays autistics (my son included) as a damaged, hideous individual, who should have been prevented if possible. There are certainly some within Autism Speaks who do not feel this way, but their videos are denigrating to autistics, to say the least.
The event tonight was sponsored, like I mentioned, by Buddy Boy's school. Buddy Boy is in a special ed class (with a minimal amount of "push in" time into a regular class) at a regular public school. The school as a whole sponsors a team for the Autism Walk each year. I'm sure that the majority of the people that are on the team are good, well meaning people. And if all the money raised goes to legitimate research, I wouldn't have much problem with it (though I do think more money needs to be spent on education, and less on research).
Most of the people I know locally in the "autism community" are nice people. Sure, some of them are into biomedical treatments (I don't know of any chelators or HBO users), and many still feel (from reading a local listserve) that thimerasol/mercury is the primary cause of autism. But most are very similar to the majority of parents I know thru this blog, working every day to take care of and educate their kids, and fighting the same battles with the school system as we do.
So it's with mixed emotions that I go to events like tonight's. It cost us only $10 a person for each kid (parents were free). The gymnastics center donated their space, time, and personnel to assist in the event. The kids have both taken classes at this facility, and I knew that they'd have a good time (they actually both had a great time). And it's a nice way to socialize with some of the other families in our community (like many, socializing of any sort is rare for us). Just being able to get out and talk to others in similar situations to oneself is somewhat cathartic (it's almost as good as blogging :] ).
But everywhere I look during this "Autism awareness" month of April (here in the states) it seems that the predominant image I see is that of Autism Speaks. The majority of events that are fundraisers seem to be raising money for them. And their message is not the one that I'd like to see be the predominant one when it comes to how autism is represented to the community.
Perhaps as Autism Speaks matures they will come to have a more inclusive and positive message. But until then I have to decide if I will walk in the Autism Walk this year. I'm thinking that I probably will (to show solidarity with local families), but if I do I'll then have to decide what t-shirt to wear for the occasion. Depending on my mood, I could go for either one advertising autism-hub, or if I'm feeling more radical, make up a custom one with "Exclusion=Extinction" stenciled on it (as suggested by Zaecus Celestis in a comment to this post)
Memorial Day redux
2 years ago