No Missing Piece: Why Autism Speaks is Dangerous

Autism Speaks, frankly, has the most ironic name of any nonprofit I’ve ever heard of, because they do everything EXCEPT let autistic people speak. Their entire campaign is founded around how awful it is to be a parent of an autistic child, without paying a single thought to how it feels to be an autistic child.

For example, recently, Autism Speaks made an interactive child” that avoids eye contact with you, to show how “frustrating” it is to be an autistic kid’s parent whose child is physically incapable of looking in your eyes. As with everything Autism Speaks does, this totally ignores the struggle that the autistic child faces. I have a proposal for a better project. Set up essentially the same hardware, with a camera tracking your eyes. However, instead of having the person in the screen avoid your gaze, make them try to look directly in your eyes. Have a participation fee of $50. If they manage to go through an entire conversation without looking in the person’s eyes , they win $100. However, if they look into their eyes even once, they forfeit their original deposit. That would be a much better way to show how difficult it is to be an autistic kid. Of course, the best option would to just have Autism Speaks listen to actual autistic kids in the first place, instead of treating them like they’re a cancer and allowing their mothers to speak about killing their autistic kids.

Autism Speaks violates the primary policy of disability activism: “Nothing About Us Without Us”. This means that if you don’t have any people in your organization that have the disability you’re advocating for, you shouldn’t exist. Autism Speaks has had exactly zero autistic people on its board of directors in its entire existence, and the only autistic person in any place of leadership resigned in 2013 due to Autism Speaks’ dangerous policies. Autism Speaks’ mission statement says that their goal is to fund “global biomedical research into the causes, prevention, treatments and a possible cure for autism” and calls autism an “urgent global health crisis”. Do you know what that sounds like? Genocide. Autism can’t be cured. It’s not a disease. It’s just as normal as other genetic differences. Yes, it would be helpful if some of the things related to autism could be treated, like sensory sensitivity and social anxiety, but we don’t want a cure. We just want to be treated like humans.

Autism Speaks has recently made a partnership with Skylanders, creating a special line of blue-and-white toys which helps give proceeds to Autism Speaks’ campaign. Other Autism Speaks donors and partners include Joe’s Crab Shack, Dollar General, Toyota, The Home Depot, GAP, ShopRite, FedEx, Philips, Tiffany&Co, The Blue Man Group, AMC Theatres, PayPal, Toys R Us, and Major League Baseball, among many others.

Autism Speaks calls autism a “puzzle” and claims that they’re trying to find the missing piece. The answer? There is none. The only thing that Autism Speaks is missing is the actual voices of autistic people and how they should help them. If Autism Speaks truly wants to help autistic people, and not just their parents, the best thing they can do is fire their whole board and replace it with actual autistic people instead of autism mothers and anti-vaxxers. That’s all it would take. Just make your autism advocacy organization actually about autism advocacy instead of autism parent advocacy. It really isn’t difficult. If you’re a company or person thinking of donating to or partnering with Autism Speaks, don’t. It really isn’t worth it.

If you want a larger list on why not to support Autism Speaks, there’s a masterpost of everything they’ve done (or not done) here.

Written by

Autistic trans girl. Activist, writer, musician, designer, programmer. She/her.

Get the Medium app

A button that says 'Download on the App Store', and if clicked it will lead you to the iOS App store
A button that says 'Get it on, Google Play', and if clicked it will lead you to the Google Play store