Last weekend, I protested an Autism Speaks rally at the National Mall. A handful of us, mostly Autistic, stood and watched as thousands of people went to raise money for the biggest autism organization in the United States. Upbeat music blared from an enormous stage. Cheerful college students and families with young children packed the sidewalks, despite the dismal weather. Some people wore homemade t-shirts and hoodies with their autistic relatives’ smiling faces emblazoned across the front. These people are, for the most part, good people. They care about their families. They care about their communities. They love the autistic people in their lives and want to do what they can to make their children’s lives a little easier. Why would anyone want to protest that?
The reason we were huddled together in our ponchos holding picket signs on a chilly Saturday is simple: Autism Speaks doesn’t actually help autistic people. The bulk of Autism Speaks’ funding goes to genetics research and trying to find the cause of autism in order to prevent it. This doesn’t really help those of us who are autistic and already exist. We need research on how to improve our quality of life. We need support and resources for autistic adults after we leave school. A skimpy 4% of Autism Speaks’ budget goes to individual and family services. Additionally, there are no autistic people in leadership roles at Autism Speaks. We have no voice in the direction of a group that claims to be for us. Jon Elder Robison, the only autistic person to ever have held a position of power at Autism Speaks, notes, “Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.”
The people who donate to Autism Speaks, by and large, don’t know any of this. I spent the majority of the protest talking to people and handing out informational flyers. Almost all of the people I interacted with were shocked at how poorly Autism Speaks serves autistic people. Others were happy to learn why some people don’t like the organization, as they had been curious. A few people brushed us off entirely. We didn’t press them. Most of our group stood silently, occasionally making friendly gestures. Then, the rally organizers called the police.
I don’t know what the Autism Speaks organizers told the officers about us. Given the amount of hostility we faced, it probably wasn’t good. 3 armed police officers were sent to deal with 6 people holding damp cardboard signs. They told us to move to a less visible spot across the street. After a quick discussion with Rachel Best, the leader of the Autistic Self Advocacy Network DC chapter, we decided to comply with the officers’ request. We tried to move to a different location with better visibility. We were told to move again. The second time, we were told that if they saw us again, they would arrest us.
This was not my first protest. This was, however, different from any other protest I’ve been to. When I marched with Black Lives Matter and Slutwalk, there were hundreds of us. We filled the streets. We obstructed traffic. I felt powerful. I felt like I was making a difference. Being one of a handful of protesters standing against an event that attracted thousands was demoralizing. I was happy to spend time with other Autistic people, but I couldn’t help feeling some despair. When there are so many of them and so few of us, how can we change anything?
Everyone knows the story of David and Goliath. David, the future king of Israel, takes down Goliath, the powerful champion of the Philistines. Goliath is a little over nine feet tall and is covered in bronze armor. He carries an enormous sword. David spends most of his time taking care of sheep, and is armed with a slingshot. Goliath challenges any of the Israelites to come fight him. David does, and against all odds, David wins.
In 2014, Autism Speaks received almost 10 percent less money from donations than they had received the previous year. Steve Silberman, a well-known science writer, has brought criticism of Autism Speaks to the mainstream. There were, according to Autism Speaks’ own estimate, 2,000 people at their DC rally this year. Last year, there were 8,000. There may have only been a few protesters at the National Mall, but there are thousands more online. Slowly but surely, things are changing. People are beginning to understand what Autism Speaks actually does. I have hope. This is what it’s like to be David and we’re going to win.