It's taken me a week to be able to pull my thoughts together about my experience speaking at the ASA conference in Providence, RI. And it is likely these observations will only be my narrow window on the conference, as I only attended for a small part of thursday and saturday--the days my two panels were scheduled.
I have already blogged about my frustrations regarding speakers *paying* to speak, so I won't say anything more about that here.
I took part in two panels, one about being a parent 'on the spectrum', the other a writer's panel. (In my other life, I'm a poet and aspiring novelist)
The panels were modestly attended; the family one more than the writer's panel. The audiences were respectful and attentive.
I had mixed feelings about the conference itself. While I applaud the ASA for including individuals with Autism in its governance, I felt as if the organization has a split personality.
I spent some time walking around the exhibitor's area and was dismayed to see so many booths focused on quasi-scientific autism 'cures' and 'treatments'. Supplements, therapies, and hyperbaric chambers, oh my.
There was a booth by either "CAN" or "DAN" (sorry, walked past it so quickly, I didn't register which acronym it was). If the ASA is taking money from these organizations, then there is at least the tacit agreement that autism is something that needs to be 'cured' or 'defeated'.
I have very mixed feelings about the hordes of bio-medical treatments that separate desperate parents from hard-earned money for questionable scientific proof.
I want to see barriers to function, understsanding, and employement 'defeated', ignorance 'cured'.
I don't think the ASA can adequately represent Autistic voices and Autistic lives until it resolves this conflict.
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3 comments:
ASA was founded by über quack Bernie Rimland who once said he wanted to send a ballistic missile into the heart of autism, and founded DAN! ASA now has the president of a quackery and chelation promoting vitamin company, Kirkman labs on it's board of directors. That's good enough reason not to belong to ASA in my opinion. They totally need to clean up their act. It's a corrupt organization, from my viewpoint. They deliberately say that there are very few adults on the spectrum in order to promote the "tsunami" --Lee Grossman's words.
It was CAN. I kind of made them cry. *innocent look*. They go on about how there are kids who wish they can function like me, and then I go all Wrath on them about how they are making assumptions about the kids and about what I can do, and if all they want to do is help then they should change their name. And I told them I wanted to cure them of ignorance and herd mentality and bullying, all of which are clearly NT problems, and therefore we should wipe out neurotypicality. This got tears. I'm good.
The 20 minute tirade at Autism Speaks was better though. I didn't let their smirky rep get a word in, just went on and on about how much blood is on their hands and how they should have to issue personal apologies to the McCarrons and every autistic person in the country, issue a retraction, and burn the godawful thing publicly while self-whipping and wearing hair shirts. (yes, im terrible).
They're doing better, but better isn't "good". At least ASA might be redeemable. A lot of the other orgs arent.
Camille--I didn't know that. Sigh.
Kassiane--I'm sorry I didn't get to meet you in person as the conference. Way to go on confronting the CAN and AutismSpeaks folks! Yes, you *are* good. :)
lisa
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