I've been up for hours, wandered through blogs, read those criticizing Autism Speaks (like I did this week), read those supporting it, and wondered if this constant warfare has contributed to my migraine. There are good posts out there that raise reasonable questions, like Zoe's post on why she thinks people shouldn't give money to AS. Her criticisms are reasonable calls on Autism Speaks to alter its way of conducting affairs. It's reasonable to expect autistic people to be on the board of an autism non-profit, but I wonder, given how Autism Speaks came into existence if that's likely to happen. I agree that too little is spent on families, but that was never AS's mission, so doubt it will change anytime soon. I think compensation issues are legitimate concerns, as well, and wonder why Geri Dawson collects the highest salary while still working full time at a university in North Carolina. Lydia Brown's post, explaining why she felt Holy Cross shouldn't support Autism Speaks' Light it up Blue campaign also raises interesting points worth considering.
While common arguments against AS's research is that it's eugenic in nature, I know that not all of the research is geared towards prevention or cure, and certainly not towards prenatal testing in order to eliminate fetuses with genetic markers (which I am against). While most money goes to research, the Autism Speaks website provides valuable resources for families. I've used the tools that Autism Speaks has created for families, from their first 100 days to their school toolkit to their transitioning into adulthood toolkit.
It would be easy and much more comfortable to paint Autism Speaks as all villain or all saint, depending on where you're coming from, but the reality is it is flawed like the people who run it and the people who support it. We're all flawed, all caught on the various tenterhooks of competing demands and needs.
Every autism organization necessarily reflects the biases and perspectives of their founders. Autism Speaks gobbled up pro-cure, pro-vaccine-causation groups, and that creeps through. It's also an evolving organization, and it will try to please everyone who gives money, often resulting in pleasing no one. It's no different from famous autism speakers who always make sure to tip their hats to the anti-vaccine crowd and the DAN crowd at every speaking event while also trying to please those who don't buy into vaccines as a cause or chelation as a cure. It's the quintessential attempt to have their cake and eat it, too: to offend no one so much that the money stops coming in.
The National Autism Association favors the vaccine-caused-it, woo-loving crowd, but they're not all bad. They stand against restraint and abuse; they provide information on how to keep your loved ones from wandering, and what to do if they do wander.
The Autism Society provides a large conference each year with something for everyone, support groups in several cities, but it also favors facilitated communication.
ASAN stands strongly against restraint and abuse and represents autistic individuals. Instead of sending a message of autism as a tragedy, it celebrates autistic voices, and lobbies for legislature that will benefit autistic individuals. It also supports facilitated communication, in an attempt to include all autistic individuals and offend no one who's doing the facilitating.
My point is that every single organization will stand for some things we can support and other things we can not.
We can choose to not work with them at all over areas of disagreement or we can choose to stand together on things we agree on and respectfully disagree on areas we don't.
We ought to be free to voice our disagreements without being thought to be traitors--if blind obedience and complete agreement are expected--that should be a red flag to everyone.
The result of choosing to work with organizations with whom you don't fully agree with can and is often an uncomfortable feeling of cognitive dissonance. I wish I could say I'd found a way through that discomfort, but the reality is that we should feel that sense of discomfort; it keeps us agitating for the things we believe in, encouraging the organizations to consider other perspectives, and making it clear that we are not blind followers but are instead partners of equal value.
So I read all the posts relating to different viewpoints on the various autism organizations and I keep myself open those perspectives. I respect other people's right to make up their own minds and respect them enough to not push my perspective on them in their places.
Respecting individuals' autonomy means allowing dissenting voices and not trying to shout them down. Our society, not just the autism community, doesn't do a great job at that, at least not online or in our legislatures. It's a shame because it is this unwillingness to consider other points of view and compromises that hamper our ability as a nation to solve the very real problems we are facing.
- ASAN And The IACC, ICD-9-CM Codes, And Wandering: A Call To Reasoned Action
- The Wandering Code: The CDC Explains
- Autism, Community, Personality Traits, And The Chasm That Threatens
- Let There Be Light: Todd Drezner's Loving Lampposts, A Contrast To MacNeil's Autism Now
- Wandering Code Examined: Semantics And Emotions In The Midst Of Tragedy