Saturday, April 9, 2016

Skeptical Saturday: Autism Speaks? Not For Autistics

Image courtesy The Autistic Beekeeper


This is your annual April reminder that Autism Speaks is a misguided at best and loathsome at worst organization. I realize that the "light it up blue" event touches a lot of feel-goody nerves, but if you're interested in helping autistics, consider some alternatives.

1. Participate in, or just signal boost, the #RedInstead hashtag and Internet event. Autism Speaks routinely dismisses or marginalizes the reality of autistic girls and women; #RedInstead works to combat that. In a similar vein, #ActuallyAutistic features....people who are actually autistic, as opposed to celebrities in blue t-shirts. There are lots of great thoughts and blog links to be had in both.

2. For charitable donations, please direct your money to the Autistic Self-Advocacy Network or the Autism Women's Network. You can also make sure to vote for local, state, and federal representatives who support things like funding education (to pay for 1-on-1 classroom aides and special education teachers) and disability (kind of self-evident). Charities shouldn't be filling in all the gaps.

3. Check out some biographies by adults on the spectrum. Temple Grandin's is a popular one, as is John Elder Robison's. Autism is a spectrum disorder and every autistic person experiences it differently, so neither Grandin nor Robison should be considered to be speaking for the population at large. But Autism Speaks, and consequently the "light it up blue" event, focus almost exclusively on autistic children. But autistic children grow up into autistic adults—at which point we seem to forget about them.

4. "People-first" language is gaining traction among a number of communities, but when it comes to autism, by and large "identity-first" is preferred. Naturally some people will prefer the "person with autism" model, and of course you should respect their preferences, but by and large, members of the autistic community see autism as an inherent part of themselves, not something separate from.

4 comments:

  1. Thanks for drawing attention to the flaws in the Autism Speaks organization. I only had a very small awareness of Autism Speaks to start with, so I had no idea of the criticisms of it. Off to do some reading!

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    1. I'm kind of throwing a grenade out there in Internet-land, because I know (some) parents of autistic children feel supported by Autism Speaks and find their work to be of value, but I don't think I've met a single autistic adult who has felt welcomed, supported, or truly embraced by the organization or their stated goals. Personally, if they would take all the investments they've made into research (into a cure, which will likely never happen) and instead expanded the support they provide for siblings and caregivers to autistics—and let other organizations work on behalf of the autistic community, from kid up to adult—that would be a really good thing.

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  2. Yaaaasssssssssss. So much Autism Speaks stuff was on my Facebook dashboard the other day. Made me so ragey but I don't always want to be the one calling people out on FB. Only sometimes. Hah.

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    1. I'm so usually THAT FRIEND who posts Snopes links on your shitty FB post, but doing the same with Autism Speaks can...hurt feelings. So now I just post passive aggressive reminder images like this one as soon as I start seeing the blue profile picture overlays.

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