On Unity and Autism Speaks

Autism Speaks: 10 Years of Eugenics. A Lifetime of Fear.
Parody of Autism Speaks 10th Anniversary Logo

Autism Speaks.

I’m not going to mince words. I hate Autism Speaks. I hate their message, I hate their bad science, and I hate that they have so much power and reach.

Journalist David M. Perry (@Lollardfish) wrote a piece on what it would take to “fix the charity that wants to ‘fix’ autism”.

It’s a good piece, and Perry cites three big-name autistic activists who sound like they could, someday, accept unity with Autism Speaks, providing it changed its ways.

I don’t share that sentiment. I cannot honestly see myself ever committing to unity with Autism Speaks.

But isn’t that harsh? Doesn’t that detract from Autism Speaks’s potential to improve?

Well, yes, it is harsh, and deservedly so. Autism Speaks has dominated the conversation about autistic people for a decade. They’ve valued non-autistic voices over autistic voices, told the world that autistic people are an epidemic that needs to be cured, and put more way money into trying to prevent us than trying to support us.

Autism Speaks has exploited actually autistic children for profit while spreading the message that those same children are a blight on humanity. They seem to not care that autistic kids get those same messages, too, and internalize them. They seem to not care that their message enables violence against autistic people of all ages.

Autism Speaks has exploited autistic kids — and ignored autistic adults who criticize their organization (when not ignoring our existence, full-stop). Only now that a non-autistic man’s book about neurodiversity (Neurotribes by Steve Silberman) and editorial criticizing Autism Speaks have gained attention do they seem to even acknowledge that there is a rift between them and autistic adults.

Autism Speaks is, in large part, the reason why I and other autistic activists face antagonism by so-called “autism parents.” They tell us we’re not autistic enough, they demand our diagnoses, they gaslight us and then mock us for not being “neurotypical” enough.

So what would it take for me to be okay with Autism Speaks? For the entire organization to be run and staffed by actually autistic people. For the focus to be on understanding and supporting autistic people of all ages and from all marginalized groups. For real effort to be put into undoing the harmful messaging of the last 10 years. For the organization to be called “Autistic People Communicate (and non-autistic people don’t speak over us).”

In other words, I will never be okay with Autism Speaks.

Fellow autistic Twitter user Sam Harvey (@Antleader) wrote another response piece to Perry’s article here: It’s a Circle! It’s a Square! Wait, How Can It be Both and Neither at the Same Time?


About Eb

I am an Autistic Disabled Filipino-USian person. I use ID-first language. My pronouns are they/their/theirs.

6 comments:

  1. I am an autistic INTJ. I am not the extreme, stereotypical INTJ other MBTIs make INTJs out to be. I don’t like being that I’m not “autistic enough” to count and then being shooed away not being “neurotypical enough” to join the autism discussion. I don’t know what these people want from us.

    1. I don’t know really what they want, either. I think what they’d like is for us to not talk at all, or to shut up and be grateful.

      Interestingly, I took the MBTI lots and lots of times when I was younger, and I kept getting different results bc of overthinking it. I finally figured out how to answer and I came out as INTP, but borderline on N/S and P/J. I haven’t taken it again in almost a decade. Hmm. Could be interesting.

      1. I’m an ambivert; I border on I and E, but mostly fall towards I. I’m too brash and forceful to be a true introvert, yet too reticent and thoughtful to be a true extrovert.

    2. I think they want us to be silent because they are an advocacy organization for parents of autistic people who parade around all high and holy claiming to advocate for autistic people. They advocate for parents by silencing us which they use as a further reason for their one true goal: the eradication of autism and autistic people. They do it because we are not easily controlled and nor society caught on yet what autism speaks is really doing. Autism speaks tries to write the narrative of autism for us because society hasn’t realized or accepted we can narrate what autism is ourselves.

      Great question!

      1. “Autism speaks tries to write the narrative of autism for us because society hasn’t realized or accepted we can narrate what autism is ourselves.”

        That sounds accurate. I’d go so far as to suggest a large part of why society hasn’t realized or accepted that we can narrate our own lived experience as autistic people is because of Autism Speaks.

      2. Oh, I completely overlooked that! I was having an “INTJ moment” and completely forgot to consider that human nature is inconsistent.

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