Autism Speaks No Longer Seeking Cure; This Autistic Person Couldn’t Care Less

Yesterday, Disability Scoop published an article stating that Autism Speaks has discontinued its use of the word “cure” in its rhetoric.

Previously, Autism Speaks spoke of unifying the autism community to address what it called an “urgent global health crisis.”

“We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism. We strive to raise public awareness about autism and its effects on individuals, families and society: and we work to bring hope to all who deal with the hardships of this disorder,” the old statement indicated.

Well, that’s good, right? It’s good to not be talking so much about a cure anymore, right?

Well, maybe.

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The new version, which the nonprofit says has been in the works since at least late last year, takes a decidedly different tack.

“Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions,” reads the update. “Autism Speaks enhances lives today and is accelerating a spectrum of solutions for tomorrow.”

Not only does it sound like a lot of nice words couched in nice language that don’t actually mean a thing, but it’s very parent focused (still) and doesn’t actually seem to help actual autistics.  Oh, sure, maybe we’re not being called a national health crisis anymore, so I guess in that respect, it’s a small step forward (more like a reluctant shuffle, a tiptoe).  They’re using the language of the neurodiversity movement in order to become more relevant, I suppose.

But Autism Speaks hasn’t done the basic duty of any organization who has continually royally screwed up.

  • They haven’t apologized for plagiarizing an autistic activist’s work.
  • They haven’t apologized for the atrocity that was “I Am Autism”
  • They haven’t apologized for, as part of Autism Everyday, a new promotional video, for a member of their board talking about committing a murder/suicide on camera in front of her autistic child.  Said member of the board then split off from Autism Speaks to form the Autism Science Foundation.
  • They haven’t apologized for giving the Judge Rotenberg Center a table at their walks, a place that uses electric shocks on autistic people and has been condemned by the UN.
  • They haven’t apologized for treating our parents as heroes and saints for the basic minimum duty of caring for us.
  • They haven’t apologized for the abuse that they’ve hurled at autistic activists that dared oppose them on their webpage and Facebook pages.
  • They haven’t apologized for the many times in which they pretended like autistic activists don’t exist.  Notable examples are mostly on Twitter, where they created multiple tags for different events (#MSSNG  and #AutismSpeaks10 , for example) for the express purpose of celebrating parents and professionals and how they’ve benefited from the existence of Autism Speaks.  Autistic activists fought back, used the tags, and they ignored us and changed the tag they were using.

So I’m waiting. For apologies, for acknowledgments.  Maybe they’re capable of changing, but I’m highly doubtful, and I don’t in any way think that this is anything but talk with no action.  I also think that the proper response to criticisms is to start over entirely, not to ignore autistic activists’ criticisms and just change the words.  That doesn’t mean anything.

In addition, “solutions” sounds a whole lot more like eugenics than “cure” ever did.

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thecaffeinatedautistic

I am a 35 year old parent of two multiply neurodivergent preteens. I am Autistic and queer.

11 thoughts on “Autism Speaks No Longer Seeking Cure; This Autistic Person Couldn’t Care Less”

  1. I ask myself what caused this “change of the course” given it will be a real change instead of nice wording but same goal as before.

    As far as the terms “solution” is concerned: I know a little bit about the history of eugenics in the US (thanks to Steve Silberman) and I see the very danger of creating the prerequisites for eugenic evolution. However I wouldn’t put the term solution in that context,

    “across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support”

    solutions through advocacy and support doesn’t sound like eugenics for me but to deal with *living* autistic persons.

    But I want to emphasize, I’m still very sceptical about realising these goals in a benign manner. Apologies are necessary and should be demanded as loud as before, if not louder. I’m not sure if this change of wording is a result of the protest (that would be good) or new marketing strategy to mask the real goals.

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  2. I really don’t buy in to the whole ‘dropping the ‘cure’ aspect’ thing at all. It just makes me think that maybe they’ve realised the whole ‘magically curing autistic people’ ambition is a little bit sci-if, and are probably going to focus more on eugenics ‘prevention side’ instead.

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  3. Great article. Totally agree. I have put a link to it on my Facebook page “Autism Spectrum Stuff” to help counteract Autism Speaks April promotion “Light it up Blue.”

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