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.