Not Good Enough, Autism Speaks

I watched a video about AAC changing lives of non-speaking Autistics. It sounded great and the title – I Want to Say – seemed to indicate that our voices, the voices of Autistics who type to communicate, would be the main focus.

My first alert signal came when I saw the Autism Speaks logo associated with the video. It turns out that the video is part of a project – Hacking Autism – which is also an Autism Speaks project.

But I did not have to know this to feel disappointed. In the first few minutes of the video, Autism Speaks’ favorite statement: “more children will be diagnosed with autism than AIDS, diabetes and cancer combined.”

The comparison is not real, since autism is not a disease and nobody dies of autism (unless one of us is murdered for being Autistic – it happens).

Then a self-important “autism specialist” says that we suffer, because we are Autistic, much more than anyone can imagine. I am Autistic and I do suffer, not from being Autistic, but from ableist societal attitudes.

There are scenes of Autistics typing and it would have been great if the producers had focused on what they were typing, how it helps them and how to make it available to more people. After all, the title of the video is “I Want to Say.”

As it has been their practice, Autism Speaks never allow Autistics to say what we “Want to Say.”

Instead, parents are the ones telling the story, their version of it. I would like to hear the Autistic voices, their experience from not being able to understand to being finally heard.

It makes me sad that the ones who were supposed to be the stars of this video, and who obviously understand what is said about them, are watching this and hearing what is being said.

“Swallowed by his autism”

As if there was a non-autistic person before the autism “swallowed” him.

“Suffering with Autism” 

Maybe they should have asked the Autistic himself if he suffers.

“He is very sweet for an autistic child” 

Apparently that mother believes Autistics are, in general, monsters.

“I love who he is but I would give him a pill to cure autism so he can be happier” 

If you love who he is, there is no “but”. Besides, this Autistic here is very happy.

“I want him to speak, I do” 

Communication does not mean speech.

“Their entire existence is a battle” 

I don’t battle autism. I battle misconception, silencing tactics and ableism.

“Something was wrong”

It would be better if the statement were “something was different”. If my father still used “wrong” to define me, even a younger version of me, I wouldn’t feel fully accepted by him.

I don’t think the parents in the video don’t love their children deeply. They are clearly proud of them. But the language is still based on the mass hysteria propagated by Autism Speaks and other organizations. Their children can understand, the parents know that now, but they still speak of their children as if they can’t.

The parents and the “specialist” want us to see the Autistics, who can now type and be understood, as “close to normal” as possible, because “normal” is the only acceptable outcome. But even as we watch the very few scenes with the voices of Autistics and their accomplishments, the message of burden and the message of “you are better now that you can type, too bad you are still Autistic” remains.

I can type, I am happy and I don’t see myself as better than, or superior to, Autistics that still can’t. I am not better than Autistics who might never communicate in a way considered satisfactory to neurotypicals (in my opinion, everybody communicates).

So, Autism Speaks, you did not use children screaming, voice of doom, kidnapping messages, threats from parents to their Autistic children. But you still made your message clear: we are burdens, life with us is difficult, but we can be “almost normal,” if we can type like our non-autistic peers.

I am not “normal” and I intend to remain completely distinguishable from my peers.

AAC is a great way to include Autistics and other disabled people. It is an asset to us, we can have our voices heard. The video is opportunistic in the way it uses what gives us a voice to send the message that we are still “wrong”. And, despite the fact that those Autistics are typing, their voices are heard only in very short segments.

The video is also opportunistic in the way it uses minorities, who are more likely to be under diagnosed, to try to appeal to a broader audience. Minorities deserve to have more access to the diagnostic process and in the delivery of services. They do not deserve to be used as a tool to raise more money that will not benefit them.

Autism Speaks, you failed, again. You silenced voices in a video with the title “I Want to Say.” You excluded us using a tool of inclusion.

Here is another quote from the video, referring to not being able to communicate:

“How would I feel like if I could not get across what I want to get across?” 

They should have asked the Autistics. But they didn’t. Autistics in the video were not allowed to get their message across. They were never asked what their message was, how they feel or even asked to type their names.

Not good enough, Autism Speaks. Not even close.

 

Amy Sequenzia, AWN Contributing Writer  About the Author, Amy Sequenzia.

Comments

  1. says

    Junior will most likely not be happier if he is ‘cured’ – but then again, his happiness / suffering / well-being is of no consequence to his owners. What matters to them is that he bring credit to them and increase their status in the local social hierarchies. To that end, any and all means are permissible so as to achieve that desired end.

    Or is it THAT simple? What is behind those double standards – about the need for ‘least common denominator’ notions of normalcy? What of the need for ‘compliance unto death and beyond’? Is there a need to essentially ‘embody’ the principles found in “How to make friends and influence people”?

    Or is the matter deeper and darker still? What of one’s owners? What makes them tick? Is it only the autist who is defective – as per common ‘received knowledge’ – or is it those who name him or her defective adding mightily to the issue of his or her supposed (or defined) deficiency?

  2. says

    A short poem I wrote on this subject:
    Autism $peaks, I want to say
    But you took my voice away
    You said I could talk with my AAC
    Then spoke with my mom instead of me
    The reason that I have meltdowns
    Is people like you thinking I’m a clown
    Autism $peaks, I want to say
    I wish you hadn’t come today

  3. Jackie says

    The problem is outside those in the anti-cure community, few people see how incredibly immature pro-cure advocates have been. They will silence Autistic people for the petty reasons a child would silence someone. “I DON’T LIKE WHAT YOU’RE SAYING!” “YOU CAN’T BE AUTISTIC YOU CAN TYPE!” “WWHHOOAAAA! WHOOOAAA! WHOOAAA! THE BIG BAD AUTISM HAS MY CHILD!” It’s extremely difficult reasoning at all with pro-cure parents or Autism Speaks, because it’s like arguing with a 2 year old defiantly pouting and saying, “BECAUSE I SAID SO!”

    What gets me in all of this is Autistic people have been said to lack social skills and empathy. We’ve been told to not have “meltdowns” or exhibit our emotions in bad ways. Now we have an. entire movement of “adults” acting like overdramatic children deciding if we should exist or not.

    Who looks mentally disabled in this situation? Not those with a form of Autism. The joke is on them, every single negative trait they apply to us, they portray ten times more. Perhaps these pro-cure parents could use some ABA therapy, to learn not to lash out and have their “meltdowns” over that difference exists. It’s stunning when all your life you’ve been told you don’t understand social behavior, to realize the ones who say those things haven’t matured much since age 16. We’re being silenced because Autism Speaks is like the bully clique in high school, and pro-cure parents are their followers.

    How does it make any sense that we’re mentally disabled, when right now you could go to /r/autism, which the mods allowed to be hijacked by pro-cure parents, and see these parents writing overdramatic tales of how their children suffer with all the persuasiveness of a 2 year old mid-tantrum. Judging their children in the most petty and inconsequential ways as proof there needs to be a cure. We’re the ones who don’t get social skills? No, we’re the ones who don’t have the time to waste on others immaturity. We lack empathy? Does the parent who refuses their crying toddler a candy bar in the check-out line also lack empathy? Should they be cured too? Not having a tolerance for arguments like, “My baby can’t go boom boom by herself, SUPPORT THE CURE!” is having the maturity to understand some people don’t deserve any attention for their childish antics.

    That’s not something that needs to be cured. If it were cured society would be in the hands of people like these pro-lifers too busy running around wailing and pouting to get anything worthwhile accomplished. In other words do we really want a world where wars happen over the equivalence to “I’m MAD, I WANT MY CANDY BAR NOW!” That’s the world that will exist without Autistic people there to run it.

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