Everything is problematic: Problematizing Autism Speaks

[Columns, letters or cartoons published are the work of the attributed author and do not necessarily represent the official views or opinions of “The Highland Echo.”]

April is Autism Awareness Month. You’re probably aware of autism, to an extent, but are you aware of who you’re donating to when you donate to awareness campaigns?

Autism Speaks is the largest organization with the biggest hand not only in Autism Awareness Month, but in autism research as a whole.

They’re the ones you see raising money in stores all across the country. They’re the ones who make it so you can’t get on the Internet in April without seeing images working off their logo, a puzzle piece.

They’re the voice of autistic people—it says so in their name—but who’s actually speaking?

Autism Speaks has no autistic people on their board.

Despite facing criticism for several years, they continue to operate an organization for autistic people without having any in a high-ranking position, which means the national rhetoric surrounding autism is not being controlled by people who have actually experienced it.

There are also issues with where the money that you’re giving them is actually going.

A breakdown of Autism Speaks’ spending shows that 21 percent of their money was spent on advertising, 22 percent on fundraising, 44 percent on research and only 4 percent on family services.

That 4 percent is basically the only money that autistic people who need it actually see.

When you donate to Autism Speaks, you’re primarily donating to their research endeavors, and that’s where you have to break down exactly how you feel about autism, because Autism Speaks knows exactly how they feel.

It’s right in their mission statement: their goal is to fund “global biomedical research into the causes, prevention, treatments and cure for autism.”

That’s why your money isn’t going to help autistic people who are already alive. Their main goal is preventing autism altogether.

This a strong divide in the discussion surrounding autism.

Many people don’t think that it’s something that should or can be “cured” or “fixed.” These people don’t find comfort in organizations like Autism Speaks. They’re uncomfortable with the message that autism is a “global health crises,” because, to many in the autistic community, they’re not sick. Their existence is not a crisis.

Autism is just another part of who they are.

If you’re of that perception, that autism is just a state of being, then it’s easy to see how Autism Speaks goes from uplifting to sinister.

When it comes down to it, “curing” is essentially the same thing as “getting rid of,” and there are plenty of autistic people who are fine with who they are.

If you want to donate to an organization that helps autistic people, consider taking the money  you might have given to organizations like Autism Speaks and, instead, giving it to a group like ASAN, the Autism Self Advocacy Network.

Their catchphrase is “nothing about us without us,” and they are at the forefront of the autism acceptance movement. They are run by and for autistic people, and they’re even attempting to take back April, changing it from Autism Awareness to Autism Acceptance month.

Both organizations are transparent with their spending. It comes down to exactly where you want your money to go.

I would want mine to go towards an organization whose first mission is helping autistic people, not preventing them.

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