Counter-Leafletting Autism Speaks Canada: Experience and Lessons from the Field

Members of A4A Ontario counter-leafletted at the Autism Speaks Walk-a-thon in Toronto on June 3, 2018.

Why we were there
Autism Speaks doesn’t have the support of most autistics. It uses hate speech to describe autism, using lies like “epidemic” and portraying autistic children as burdens. Autism Speaks does not have autistic people as decisionmakers in their organization. Almost none of their budget goes into useful services, mostly towards salaries and “research” (see below). In fact, 51 percent of their Canadian budget is consumed by overhead costs, well beyond the reasonable range according to charity watchdogs.

Autism Speaks Canada also gives more than $500,000 per year to MSSNG, the world’s largest Whole Genome Autism Study. Through it, researchers are attempting to identify autism-linked genes which, if found, would become part of prenatal testing, abortion and eugenics.

Our action
We had a big banner which read: “Autism Speaks Doesn’t Speak for Us” and several signs that we held. We stood at the periphery of the permitted event space and along the public sidewalk during the actual march. Every marcher saw us, due to our proximity to the start of the route.

We handed out information about Autism Speaks as well as alternatives to it that are neurodiversity-friendly, so that walkers could learn about and start to support organizations that truly help autistic people.

We also handed out hand-made stimmy toys to kids attending the Walk, because the event –with its blaring music and crowded, chaotic space — was not at all sensory-friendly. To me, it felt good doing something that could have an immediate effect to help autistics and I’m so glad someone in our group suggested it!

How walkers reacted
“Get the f—k out of here. You’re ruining a wonderful day.” How… wonderful? This dad, who was about 6 foot 5, was attempting to intimidate two of us. I steered clear of him but the other demonstrator felt bold and later walked up behind the guy to say “I’m still here…” So awesome. We did have some fliers crumpled and handed back to us, but a lot of people also took them and we got some thank-yous for sharing the information. We also gave a lot of fliers to  downtown passers-by to let people know that what they see with Autism Speaks doesn’t represent our community.

An event organizer approached us early on and tried to tell us we couldn’t be in the space. We held our ground and politely asked her to send over City Hall security, who could provide the zoning rights and regulations for our action. About an hour later, security came by and told us we could stand with signs anywhere on premises but could only hand out fliers in designated areas (public sidewalk). We assured them we didn’t want to make trouble, which they accepted, and we never heard from them again.

The kids liked the stim toys, which we got at the fabric store or made from craft materials. We saw a lot of children under pressure due to the sensory overload of the space, where Marvel characters, giant Elmos and a pack of cheerleaders (complete with Autism Speaks-blue pom-poms) were cramming in their space and a PA system the size of a North York bungalow was blaring pop music, live singing and speeches.

It’s not easy to counter-protest an event like this. You don’t know what you will encounter from attendees. In addition to some hostility, there was defensiveness. “Autism Speaks helped my child!” yelled one parent.” “So do we,” replied one of group. “Why are you here?” a lot of people asked, upset but sometimes also curious. We tried our best to educate in an honest and forthright way. Meanwhile most of us had our own sensory issues with the event itself, as well as past negative experiences with some of the institutions that were there. Being at the event required spoons.

What I learned
I learned the usefulness of waiting for security to come and determine our rights a counter-demonstrators, rather than trusting someone like the event organizer (who simply wanted us to evaporate). Asking to wait for security defused a potential situation, bought us some time and gave us the clarity we needed about our rights in the space.

An important tidbit from the security guard: “Next year if you want to leaflet on the grounds, you just need to apply in advance for the permit to do so.” Duly noted!

I also learned that having a two-sided flier – one positive, about neurodiversity and one with some hard truths about Autism Speaks was useful. We could hand them positive-side up and people would be feeling good when they flipped the page.

There was no media at the event. In a city this size, there isn’t time for it to be covered. A good option for getting media would be to attend a walk in a smaller city or town.

It had me thinking about the sunk-cost fallacy as well. Many families have invested a lot of time and money into the events and culture of Autism Speaks. How does one crawl out of that world? How often would that even happen? The measurable benefit of the action was to reach out to autistics who were brought to the event, to speak the truth in a public way – and to represent our own community. They have excluded us in their autism worldview, but we will make ourselves a presence anyway.

Looking ahead
I’m so grateful for everyone who supported and/or attended this demo; each played a crucial role in planning, reacting and maintaining our rights as a counter-demo amidst the commotion of the Walk event. Every day I am thankful for the fellow autistics who drive our group with their creativity, strength, camaraderie and strategic skills. #Actuallyautistics are now a presence in Ontario, invisible no more thanks to all those who support, plan and/or attend our actions. As we enter a Doug Ford era, our presence will continue to be essential. Nothing about us without us.


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