I was poking around on Etsy when I spotted this:
This annoyed and saddened me, for reasons that will be obvious to anyone who's been following the neurodiversity blogosphere for any length of time.
A beautiful puzzle piece inscribed with the word love. This necklace is meant to show support and awareness for autism of all types.
I will be donating 100% of the price of this necklace to Autism Speaks to fund awareness and research.
(If you haven't, here's a brief list of the things autistic self-advocates don't like about Autism Speaks: eliminationist rhetoric*; non-representation/token, non-policy-setting representation** of autistic people within their organization; a poor record of actually providing material help to anyone, even when they've promised to do so; advertisements and "awareness campaigns" that portray autism as a terrible tragedy, and which also portray autistic children as dehumanized burdens on their parents; past endorsement of the wrong and dangerous vaccines-cause-autism hypothesis by the organization's founders; research funding practices that prioritize research into causes of autism while providing little to no funding for research into what kinds of things might help to improve the quality of existing autistic people's lives; a pattern of hostility and/or indifference toward autistic adults who try to engage with the organization; and exploitation and deception of families of autistic children who decide to collaborate with them on "awareness" projects).
It really makes me sad that an organization that does as much harm to autistic people as Autism Speaks does is so well-known and respected. No other autism-related nonprofit comes close to having that kind of name recognition, so you often see well-intentioned people who just want to help autistic people and their families deciding to donate to Autism Speaks, because it's the autism charity they've heard of, and they haven't heard any of our criticisms of it.
I wrote a short, hopefully very nicely-worded message to the other Etsy seller to try and get her to reconsider her decision to donate to Autism Speaks:
When I was writing it, though, I failed to come up with any other autism charities or nonprofits that are run by and for autistic people other than ASAN, which annoys me because a) there are quite a few, with differing emphases, and b) some autistic people think ASAN is problematic, too.
Hi, [other Etsy seller].
I really appreciate you wanting to do something to help out autistic people, but I thought you should know that lots of us have serious problems with Autism Speaks. I know it's the leading autism charity, but many of us in the autistic community feel that Autism Speaks is more interested in ridding the world of people like us than it is in helping us. There are other autism-related charities/nonprofits that are also run by autistic people --- the Autistic Self-Advocacy Network is one --- which might be better places to donate your proceeds if you're interested in showing support for autistic people.
Again, I'm sorry if this sounds angry or critical --- I'm touched by your sentiment, and do think you have only the best intentions. I wouldn't badger you with this if the differences between my community and Autism Speaks were any smaller or less bitter.
Thank you for reading, and for your consideration.
So, here are some of the other, more autistic-people-friendly autism organizations:
Academic Autistic Spectrum Partnership in Research and Education (AASPIRE)
Autism Network International (ANI)
Autism Women's Network (AWN)
The Autism Acceptance Project (TAAP)
... and here are some cross-disability organizations:
Self Advocates Becoming Empowered (SABE)
The National Council on Independent Living
EDIT 4/14: There are a couple of other organizations I want to mention, too: Autistics.org (which Meg Evans suggested in comments) and NOEWAIT, the National Organization to End the Waitlists, which is dedicated to improving access to support services for all developmentally disabled people.
*This should really be its own post, but here are a few examples: a video released in 2006, "Autism Every Day," included a scene in which then-Senior Vice President Alison Tepper Singer (who has since resigned from Autism Speaks over the vaccine issue) speaks about a fantasy she had of driving her car off a bridge with her autistic daughter and herself in it, and about how the one thing that prevented her from acting on it was her desire not to leave her normal daughter an orphan; a documentary called "Autism: True Lives" included a similar scene in which Harry Slatkin, husband of Autism Speaks board member Laura Slatkin, talks about both worrying and also almost hoping their autistic son might fall into a pond in their backyard and drown; a statement in Parade magazine by Autism Speaks co-founder and board member Suzanne Wright that their goal is to "eradicate autism for the next generation"; and innumerable video spots comparing autism to various terminal illnesses like cancer and AIDS, or to catastrophic, life-threatening events like car crashes, lightning strikes and kidnappings.
**While I think their addition of John Elder Robison for having no autistic board members --- other self-advocates are more cynical, and don't think anything will come of it. (See Sarah, ABFH, Clay, and also John Elder Robison's own assessment of his role on Autism Speaks's scientific advisory board).