Why I Boycott Autism Speaks

I wrote a thing a little while ago, which was supposed to be a short comment on my share of this “why I boycott Autism Speaks” post on a diary of a mom, but then it wasn’t short or really related to that particular post. Basically I accidentally essay-ed, which is a thing that happens.

Anyway, I said I’d post it as my own “boycott Autism Speaks” thing, but then life happened and spoons were none and anyway here are the words (slightly edited because Facebook took away my edit option for some reason?)

(cut because wow, that is rather long actually.)

Reading some of the older posts this mom links to, about various speeches and videos Autism Speaks has put out, I imagine what I would have done if I had been diagnosed as a kid and had seen and heard what Autism Speaks had to say (which I would have). Even with parents who would never, ever say or think those things. Even with my support system and my many autistic and otherwise neuroatypical friends and family members.

I would have seen those things, read them. I would have shutdown, or had a meltdown. I would have retreated to my room, unable to use words to ask for help. Maybe (maybe!) my mom would have been able to figure out what happened, through the difficult, tedious, painful guessing strategy that we always go through when I have a meltdown–she reaches for causes and if we’re lucky and I try really hard and we’re both patient I might get out some syllables–or even a word or two!–to guide her.

But unless she saw it happen or whatever it was was left open on my computer, she might not be able to guess. Even knowing the cause, calming me down from a meltdown can take her anywhere from ten minutes to over an hour. Not knowing it? It is so much harder. (And that’s now–having a label has helped my mom enormously, but so has knowing me for twenty years.)

As it is, 20 years old (almost) and very self aware in many ways, meltdowns like that are terrifying, exhausting, painful, isolating. I can’t use my words if I am crying hysterically and gulping for air, and my words are my most powerful and well developed tool (better written down than spoken–but that’s hardly easy during a meltdown, either). If my mom couldn’t address the cause of the meltdown, it would continue to weigh on me. Of course, when it was done, I could tell her (except not of course, except no I couldn’t, except no no no, wrong wrong wrong, never never never). Once the meltdown was done, the idea that caused it–that I am a burden or a monster or broken or worthless or lost–that idea, unchallenged because my caretakers didn’t know it was there to challenge, would burrow into my brain.

And it would sit.

I would internalize it, right next to “I’m-a-liar-I’m-a-fake-push-through-ignore-it-its-all-in-my-head” . On the shelf where my brain keeps Wrong Ideas–which is, inconveniently, the same one on which it keeps right ones.

And probably I wouldn’t say anything. Because it wasn’t important. Because even though I knew it was true I also knew it was stupid. Because I knew that if I tried, tears would come and my voice would go away again.

Because I didn’t want to be a burden.

But that never happened. Because I didn’t get diagnosed back then. Because I had other disabilities that were, at the time, more pressing. Because I’m a girl and don’t fit the stereotypes and because because because. Because of tricks of chance.

It didn’t happen to me. But it could have. Which means it probably did. It probably IS. Just to someone else, and not to me. And that’s why I‪#‎BoycottAutismSpeaks‬.


One thought on “Why I Boycott Autism Speaks

  1. Reblogged this on Scribbling on Seashells and commented:

    I meant to link to this on here when I originally posted it, but was somewhat distracted at the time due to circumstances in my personal life, and forgot.

    Since I posted this, Autism Speaks has posted a “call for unity”–another attempt to silence the voices of the Actually Autistic people they claim to want to help.


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