Why I don’t support Autism Speaks.


Found on another blog.

A long, sad story about the attitudes that Autism Speaks propagates, and an encounter with a spokesperson “autism dad”

I’m still working on my post covering the Vancouver ASAN protest against the Autism Speaks walk, but here is the story of one of the “autism parents” we encountered. The interaction here was definitely the worst and most disheartening part of the day but I feel like it’s really important to talk about.

We were well into the morning, handing out flyers and pamphlets to the masses of families in “Team Aiden” or “Team Emily” shirts, answering questions and talking to anyone who stopped to look at our signage. A man and his adult son approached us and began chatting up our chapter leader, Alanna.

Marvin leaned down and quietly identified the man as the person who gave the fear/hope/cure speech on the stage prior to the walk. His motive was clear to Marvin and me from his hello— he was not there to listen. I was, though. I listened closely as I smiled and passed out flyers, and during breaks in the stream of people I watched the interaction between Alanna and the “autism dad” with growing distaste. Eventually I began taking notes.

His main motive was to mansplain/ablesplain to Alanna— a poor, well-meaning but clearly misled“high functioning” autistic woman— exactly why we, as Autistic people, were wrong, and why he, and the other allistic parents leading Autism Speaks’ campaign of cure and tragedy rhetoric, were right.

His secondary motive was to stand directly in front of our group, blocking our table with his body, and to loudly proclaim how wrong we were, just in case any people passing happened to be listening. Luckily, while Alanna took one for the team and kept him busy, the rest of the group was able to work around him to continue handing out information and having conversations with genuinely interested individuals.

To every reason that Alanna gave as to why we were protesting Autism Speaks, this man had an answer, though they often didn’t make sense and he tended to repeat himself. His tone fluctuated between a pompous sort of authority, condescension, and a pitifully obvious attempt at sweet-talking Alanna to get her to agree with him.

To Alanna’s credit she stayed strong, not conceding on one point during the ~15 minute conversation, despite his use of every sales tactic in the book (“What’s your name? Alanna? Okay, Alanna…”) and eventually, the blatant use of the size of his body and the volume of his voice in an attempt to intimidate her.

Alanna also managed to keep up with his constant stream of very loud, very fast points, answering each piece of misinformation or outright untruth with solid, evidence-based responses. Of course, nothing this “autism dad” said in defense of Autism Speaks held up to any kind of scrutiny, and most of what he kept saying were obviously sound bites he’d heard somewhere and then repeated without really thinking. He said, “Okay, but what you need to understand is…” a lot. A few of his points were,

  • “Okay, so, you’re very high functioning.”
  • “Autism is an epidemic, and unless we do something about it as a nation, our country is in jeopardy.”
  • “You may not want a cure, but people like my son who are very sick, these very sick children, they deserve a cure. We owe it to them.”
  • “Well, most autistic people are like my son, they will never be able to talk. And those autistics need someone to speak for them, to be their voice.”
  • “I’m not sure how much you can know about this. Do you have a child with autism?”
  • “Well you’re a very small group of people who disagree.”
  • “And here’s the thing, I don’t say Autistic. Because Autism isn’t something he is, it’s something he has.”

The worst part of all of this is that, while this confused, hateful human being was spewing Autism Speaks fear/cure/tragedy rhetoric, his son was there, listening, the whole time. His son had also been standing on the stage beside him while, as Marvin described, his father told the sad story of his and his wife’s disappointment, of their dashed dreams for a healthy, happy child, and of how his son would never grow up and would need care for the rest of his days.

His son was standing nearby, giving high-fives to the passing walk participants and listening, when his father said,

“Some people say to me, ‘I think he understands more than you know’. No, I know my son very well. Sure, he understands things, but its on a very basic level.”


“He’s a three or four year old in an eighteen year old’s body.”

His son was inspecting our signs and listening when he said,

“He’ll never be able to live on his own. If left to his own devices there is no way he’d ever be able to get a job. I’ll have to take care of him for the rest of his life. That’s just the sad truth.”

And his son was standing underneath a nearby tree listening when he said,

“Who he is, what you see in front of you, is all thanks to ABA. The reason he can be here, giving people high fives, the reason I can let him just [waves his hand to indicate his son standing mostly unsupervised nearby] is ABA. Because he’s had thirty-six hours a week from the time he was two and a half until he was six. And that made all the difference. And that is thanks to Autism Speaks, because we are from Alberta and we wouldn’t have been able to access ABA without them. We wouldn’t have even known about it. Before the ABA he couldn’t do anything. Now he can kiss us! He couldn’t even kiss us.”

Eventually, in an attempt to prove to Alanna that his son was happy but largely unaware, he called his son to him in the most sickening tone— the exact tone reserved for calling a beloved dog. He took his son’s face in between his hands and, in a breathy voice ridiculous with forced excitement, he said,

“Do you like working in the library? Do you like it? Do you put the books in order really fast? Yeah, you love it, don’t you?”

He punctuated each “do you” and “don’t you” with a little shake of his son’s head, a wide grin plastered on his face, prompting his son to return the smile.

Let me repeat: He called his eighteen-year-old son to him like a dog, and then using the voice humans reserve for exciting a puppy, looked his son in the eye and spoke to him like he was incapable of understanding.

It was too much for me. Between this man’s sickening treatment of his adult son and his last ditch attempts to scare Alanna into an agreement by entering her personal space, stepping forward every time she stepped back, I was done.

I got up out of my wheelchair, marched over with my cane, and I told him to leave. My legs were trembling as I thanked him for stopping by, and encouraged him to take a look at our pamphlet he was holding, and I said he should leave now. He tried to protest a few times, but every time he opened his mouth I cut him off with a “no”. I got in his space, and I held out my hand, which he shook in a sort of bemused way, and I told him that he had created an unsafe space for autistic people, and that he needed to leave now. And, to my surprise and relief, he did.

He backed away and called his son over to him, instructing his son to give us each a high-five in the voice of a preschool teacher. His father stared on in undisguised anger and dislike as our high-five turned into a hug. We briefly intertwined fingers, and I heard him inhale as he smelled my hair, and I tried to tell him through the squeeze of my hand that I was sorry, and that I liked him the way he was. And then they were gone.

He never, not once, introduced his son, or called him by his name. He was just his sick kid, his “child with autism”, the sad burden he and his wife would carry for the rest of their lives. And we were just angry, confused young people, not autistic enough for our voices to matter, nothing we could say enough to pierce through the armor of lies and denial.

These are the attitudes that Autism Speaks propagates. Here is their brand of “awareness”. This is what they do to us.

For further reading go to the Boycott Autism Speaks FB page here


About darkmoonseries

Shelly Burrows and Michael Stewart have been role-playing together for five years and have decided to bring their characters to life. Both speak sarcasm fluently and love to talk to people about the most random of topics. Feel free to interact!
This entry was posted in Personal Thoughts from Shelly. Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s