Do You Know What You’re Supporting?
So tomorrow’s the big Walk for Autism in Atlanta.
And this Georgian isn’t going.
I’ve already written in the past about Autism Speaks, the organization sponsoring this walk, in a good bit of depth, but I’ll just reiterate things in a shorter fashion to drive the point home:
I refuse to support an organization whose idea of treatment isn’t to try to find a way for autistics to function in a hostile world, but rather to “ultimately eradicate autism for the sake of future generations”, in the words of its founder.
I refuse to support an organization which talks all the time about the peril of autistic children, while seeming to forget about us autistic adults, or at most, giving us only a passing mention.
I refuse to support an organization which falsely appears to speak for autistics, when not a single person on the autistic spectrum can be found amongst its board of directors or anywhere else in its leadership.
I refuse to support an organization with a vice president who openly admits to having wanted to drive off a bridge with her autistic daughter in frustration, in front of that very daughter, while cameras are running to record the moment for posterity in a fund-raising documentary.
And in this repudiation, I’m not claiming autistics don’t need support, services, or any other help. Even though I’m on the higher-functioning end of the autism spectrum, I’ve had many moments where I could easily have used a helping hand…or several. I, too, go into meltdowns when I’m feeling stressed or overloaded; I, too, would very much benefit from accommodations that allowed me to actually meet halfway, rather than exerting even more effort than most people dream of just to maintain an appearance of normality.
But this help should be provided with respect. Respect for who we are, for the fact that autism is a pervasive developmental disorder and not just something that can be taken out of us like a tumor. Respect for the fact that our brains work differently, and that methods of teaching which may work perfectly well for a typical child (or adult!) may not work at all for us. Respect for the fact that we may still be aware of what’s going on around us, what’s being said about us, even when it doesn’t look like we understand a word.
Strangely enough, organizations for other neurological disorders—disorders with even more of a popular stigma than autism—get it. See, for instance, Joel Smith’s comparison of Autism Speaks’ rhetoric with that of the National Down Syndrome Society for just one example.
But unfortunately, even with plenty of protest by autistics all around the country, the world, and the Internet, Autism Speaks just doesn’t seem to grasp this idea.
And that is why I cannot honestly support them.
I agree, and you should check out http://www.grasp.org. This organization is ENTIRELY comprised of adults on the spectrum, so they understand completely. Please check the site out, it will really help. I know it’s hard to trust a stranger, but I’m also an Aspie, and I feel comfortable knowing they understand my experiences better than any other autistic/Asperger site out there, since they all have it too.
Comment by Gretchen — April 26, 2008 @ 9:41 am
April bloggers bring May offers
The bloggers blogging for autism awareness community has been extended. BlogNetNews.com has provided a way for us to continue blogging in very readable format that will also help raise money.
I’m posting this spammy-message because you are one of the original bloggers from April. To read more about how this works, or to opt out, please read this post here.
Thanks!
Genevieve
Comment by Genevieve — May 3, 2008 @ 3:25 pm
New Phrase: Fractally wrong…
Fractally wrong: The state of being wrong at every conceivable scale of resolution. That is, from a distance, a fractally wrong person’s worldview is incorrect; and furthermore, if you zoom in on any small part of that person’s worldview, that……
Trackback by Trusted.MD Network — April 5, 2009 @ 5:16 pm