Saturday, April 28, 2007

Mixed Emotions

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)


kristina said...

Both? Or is there a "Hub cap" (sorry, it's been a long week).

I have been having the same dilemma. There's a walk in the upcomig month and I really like to show solidarity with other families; Charlie's teacher mentioned it to us. The T-shirt is a great idea----I saw one that says "national stim team" and Jim likes the idea----

Zaecus Celestis said...

We need alternative charities.

There;s TAAProject, based out of Canada, and there's one that christschool has said he's starting...

Unfortunately, and many would say this is pessimistic of me, Autism Speaks -started- with money, and that bright green snowball is growing all the time. Anything that starts smaller--with acceptable/important goals, and a -positive- message,--is going to need to get a lot of attention, and probably a lot of growth, fast in order to compete.

And that's assuming something bizarre doesn't happen to make Autism Speaks want to buy them out (and able to, somehow).

I was actually thinking about doing it myself for a while, but now, I'm thinking more about TAAProject. I don't have the energy to organize something small much less something that would need to change rapidly and continually.

Besides, as good as having multiple organizations might be in a positive environment, I think focus might be necessary in this one; Autism Speaks is a rolling juggernaut intent on crushing all things and people autistic.

They've even gotten Hillary Clinton proposing legislation to cure and prevent all autistics wherever they may be on the spectrum.

Joeymom said...

Go for the Hub t-shirt! Woo-hoo!!!!

We definitely need to start our own foundation, or findone that does more research about education and support than causes and cures. I doubt any of us individually have the energy to start, but perhaps a little from everybody would start up a little light?

The Jedi Family of Blogs said...

T-shirt suggestions: "Autism: it's not what you think" (I believe it can be found at Cafe Press) or if you're feeling like really living dangerously: "Celebrate Neurodiversity" :) (definitely can be found at Cafe Press).

Estee has a great essay on The Economy of Pity that nicely addresses the fund-raising issues. I sent our minister a copy when we received word that he was taking part in a Muscular Dystrophy fund-raiser last year.

Anonymous said...

TEACCH is a wonderful organization. They could use money. I believe most spec ed classes use some of their research. Sincerely, Diane

Daisy said...

I, too, have mixed feelings about Autism Speaks. They most definitely do not speak for me. I will not be walking for them locally, but I have an excuse. I'm working (judging a music festival) that day.

Ange said...

Also struggling with this one. But for me, before my children had a diagnosis, I walked to support my friends (in the NAAR walk), because it was important to them. This year, I will continue to walk to support them, if not autism speaks. I like the t-shirt with a message idea. I have also attended some events/conferences that I (and other parents, advocates, teachers, etc.) have benefitted from, which were funded in part by AS, so I try to look at it that way.

lizziehoop said...

Autism Speaks doesn't speak for me, but, they are not even in the province where I live so I don't bother with them too much. I will occasionally sell ribbons that I make myself for Autism Awareness Month (which, for some reason, is in October here in Canada) and send the money as a donation to the provincial autism centre. I think the work Autism Speaks does to bring autism into the forefront is admirable but they need to do more to include all forms of Autism as well as support and education. I would love to have someone find the cause of autism so that we could finally put an end to it but we need someone to help us deal with what we have to deal with in the here and now and get away from the ifs and whens.