Ok, so…I’ve been debating how/if/when to address this for a full year now.
After all, one of the main reason I started this blog back in April 2018 was to respond to the disheartening wave of negative posts and videos I saw all across social media that month when no one knew I was Autistic. I’ve put it off this whole time because conflict makes me ridiculously anxious. But as April approaches, I feel the need to step up and speak out. It’s time to rip off the bandaid, just like I did last April when I came out as Autistic through this blog.
Please bear with me. I know for some of you this will be a very uncomfortable read. But I urge you to please listen to Autistics!
To put it bluntly: Autism Speaks does not speak for me. I am not a puzzle piece, and I do not “light it up blue.” I do not support eugenics and I reject the notion that Autistics need to be “fixed” or “cured.” (I support assistance, accommodation, and adaptation!)
Phew, ok. I said it.
Now… to address why. (Eek!)
So many others have already spoke about this, so I will use their resources rather than try to re-explain my reasoning. I urge you to check them out with an open mind and consider donating to and supporting other, Autistic-led organizations.
This video by Amythest Schaber (Ask an Autistic on YouTube and Neurowonderful on tumblr) from 2014 is a good place to start. The video raises fantastic points and is worth a watch, though some of the data shared is outdated. (More up-to-date info below and it’s not pretty.)
Here is an image from ASAN (Autistic Self Advocacy Network), detailing how Autism Speaks uses their funds. Note that less that ONE POINT SIX PERCENT of funds is now devoted to family services…
If you would like to hear more Autistic voices communicate their discomfort with Autism Speaks, feel free to check out this list of posts, A Roundup of Posts Against Autism Speaks.
***If you are still on the edge of whether or not to support Autism Speaks, please watch this video: I Am Autism. *** Ask yourself how Autistics feel watching this. (Hint: NOT GOOD.)
(Autistics… I recommend you do not watch it. It is horrific and it honestly makes me depressed and anxious. Please take care of yourself and stop or don’t watch.)
Funny how the only voices presented are “Autism’s” and parents. No Autistic people… hmm… it’s almost like they don’t value Autistic people’s thoughts and feelings…
Phew. Okay. I did it. In time for April 1st. Done.
If you—like me before my research into and subsequent diagnosis of ASD—currently or used to support Autism Speaks, please don’t hold onto guilt.
Instead, please consider arming yourself with facts, research Autism Speaks and alternative organizations, and pledge not to support organizations who speak about us rather than including us and amplifying our voices. (As ASAN says: “Nothing about us without us!”)
Please check out:
Autistic Women and Nonbinary Network
ASAN (Autistic Self Advocacy Network)
Instead of “Light it up blue”, check out:
-Red Instead, #RedInstead
-Go Gold for Autism, #LightItUpGold, #GoingForGold
-Tone it down taupe #ToneItDownTaupe
Consider celebrating Autism Acceptance month!: https://www.autismacceptancemonth.com/about/
And of course, another way to support us is by following and listening to Autistic people.
You can find us on most platforms with the #ActuallyAutistic hashtag. If you have questions for us, you can use #AskingAutistics.
[Featured image credit: Photo by Bich Tran on Pexels]
3 thoughts on “Autism Speaks…”
Sara your voice comes out loud and clear. You present facts while encouraging compassion. I am always better for having read your blog, and I come away more completely informed. I look forward to many to come.
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Thank you so much, Kat. That means so much to me. I appreciate the support. 🙂