I’m #ActuallyAutistic – Why We Hijacked the #AutismSpeaks10 Hashtag

Here’s the thing about the “autism advocacy” organization known as Autism Speaks – it doesn’t advocate for people with autism. In fact, if it’s said to advocate for anyone, it would be for overwrought parents of autistic children. In fact, they’ve promoted a video sympathizing with a mother who says – with her autistic daughter in the room – that she considered driving herself and her daughter off the George Washington bridge because of the enormous burden of it all. The only reason she didn’t carry out the murder-suicide was because she worried about how it would affect her non-autistic daughter. Let me repeat: the mother said this, with the daughter she wanted to kill within earshot, for a camera crew representing an organization that purports itself to advocate for autism awareness. I will not link to this video because I do not want it to get more views.

Here’s the thing…I am autistic – Asperger’s, to get most specific – and I don’t want the type of “awareness” they’re advocating.

By hobvias sudoneighm (Flickr: /doh) [CC BY 2.0 (http://creativecommons.org/licenses/by/2.0)], via Wikimedia Commons

What Autism Speaks Actually Advocates

Aside from sympathizing with parents who want to murder their autistic children, Autism Speaks has even more despicable things hiding in its wings.


Don’t get caught up in their PR spin: when Autism Speaks talks about all of the money they’re pouring into finding a “cure” for autism, what they’re really saying is that autistic people need to be selected out of the gene pool. There is no cure for autism. Once you’re born with it, it’s part of who you are. If someone could wave a magic wand and make me neurotypical (NT) – not an Aspie anymore – I would no longer be the same person. My personality would be different. My habits and affectations would be different. Maybe I would magically gain the power the navigate social situations the way most people do, but would I lose my natural empathy? Would I still be as intelligent as I am? Would I lose the ability to perform my job well because spelling and grammar errors no longer jump out at me as Things That Should Not Be? The only way to “cure” autism would be to prevent us from being born, because autism starts in the womb. Sure, early intervention can help re-train the brain to make some of our symptoms less severe, but we’re still autistic. But you can’t call yourself an autism activist if you would rather get rid of us completely than support those of us who are here.



As you can guess from the aborted murder-suicide interview I mentioned above, many of the “autism awareness” campaigns run by Autism Speaks focus on all of the things that parents of autistic children have lost, often equating an autistic child with a child who has died or been kidnapped. What these parents can’t do anymore. (You know what? Parents of NT children lose a lot of their freedom to go out and have fun with their friends, too.) Autism Speaks says no parent can possibly be happy unless their child is NT.

Tone Deaf

The irony of the organization’s name – Autism Speaks – is that they don’t have board members who are on the autism spectrum. They briefly worked with autistic author John Elder Robison, but they had a bad breakup.  And when autistic people try to give feedback about the organization’s mission and messaging, we are completely ignored. Not all autistic people are non-verbal, but even when we do speak, Autism Speaks does not listen.

So There You Have It

That’s why people like me who are #ActuallyAutistic hijacked the #AutismSpeaks10 hashtag that the organization created to celebrate 10 years of hating on the people they claim to advocate for.

Do not support Autism Speaks. Do not “light it up blue.” Do not buy that puzzle piece merchandise that implies we’re no good unless our puzzle can be “solved,” e.g. we magically become NT. Autism Speaks is a hateful organization, and if you buy their merchandise and utilize their messaging, you’re validating them and providing them with means to continue their harmful work.

Christina Gleason (976 Posts)

That’s me: Christina Gleason. I’m a professional copywriter, editor, and blogger. My company is called Phenomenal Content. (Hire me!) I'm a multiply disabled autistic woman doing my best in this world built for abled people. I’m a geek for grammar, fantasy, and select types of gaming, including Twitch Sings and Plants vs Zombies 2. I hate vegetables. I have an intense phone phobia, so I’ll happily conduct business over email or IM instead.


  1. Thank you for continuing to bring awareness to the issues with Autism speaks. I did a whole piece on it back in April for #redinstead and what Autism Speaks claimed as a change in their direction only equaled in a total of 6% of all funds raised going to families at all. I didn’t get a chance to join in on the hijacking fun, but I loved looking back through the hashtag to see everyone’s great work on it!

  2. Naughty Autie says

    Not only that, but Alison Tepper Singer later claimed that her comments had been taken out of context and she had contemplated murder-suicide thinking she would not receive services for her eldest daughter. So why not add that context at the time? Besides which, during such moments of deep despair, you’re not thinking of anyone at home, much less a child you care more about than the one strapped in behind you in the car.

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