Anyone But Autism Speaks
I received an email from Autism Speaks the other day. To paraphrase, it said the best thing I can do to support someone with autism is to donate to Autism Speaks. And get my neighbors to donate too. And anyone else. In fact, if I can hold my friends and family upside down by their ankles and shake them Autism Speaks would appreciate having whatever falls from their pockets.
April is Autism Awareness Month and I can already hear the first few bars of Pink Floyd’s Money playing somewhere in the distance as the Autism Speaks fundraising machine fires itself to life like a turbo engine that runs on powder blue catharsis.
My feelings on Autism Speaks have been documented before, so I won’t belabor my grievances for the bystander culture they’ve created by handing out puzzle pieces in exchange for complacency. Suffice to say, as we approach this hour of giving, the way in which Autism Speaks has monopolized the goodwill surrounding autism becomes more nefarious because they continually position themselves as the best (and only) way to support anyone with ASD.
Autism Speaks, much like the other wristband causes, are great at generating a lot of hoopla, selling a lot of merchandise, and getting a lot of well-meaning folks to walk or gather or screw in light bulbs. In the end, the boys in the count room dance like Ginger Rogers, friends & family get to feel good about themselves, but for anyone with autism I suspect their quality of life has improved by a percentage so negligible it would need to be measured in butterfly effects.
Believe it or not, there are actual people with autism alive and developing a culture of neurodiverse writers and activists telling their stories and expressing how they would like to be represented. The work that they’re doing, while still very much a small subculture, represents a future much brighter than one in which we light up our patios blue each year like some neon plague cross. You wouldn’t know it because Autism Speaks has sucked so much oxygen from the atmosphere that very few others can sustain life.
We have a small group over on Facebook called #autismfightsback. While it’s an awkward mix of parents and older folks with ASD we are committed to turning Autism Awareness Month into something built on action rather passiveness and the promotion of neurodiversity rather than promotion of general “awareness”. The inclusion of individuals with ASD in civics, i.e. teaching our children to engage in our communities and in politics, highlighting individuals with autism who were heroes and not victims, listening to people with autism rather than academics, and donating to individuals with autism and activist ASD causes are critical to supporting this next generation of autistic individuals break through the ceiling.
With that in mind, I urge anyone considering a donation to Autism Speaks to seek out individuals with ASD who are writers, activists, and artists and donate, purchase, fund, or otherwise flow your money toward them instead. The return on your investment will be greater to this cause, and Autism Speaks will still meet the fundraising goals they need to print coffee mugs that say “I Heart Someone With Autism”.
Here are a few places to start. Folks wiser than me, please feel free to add others in the comments:
