A letter I wish I could send

Okay, family member. Do you think you are doing me and your son a favor by donating to Autism Speaks? You’re not. I don’t care how good your intentions are.

First let’s take a look at Autism Speaks’ mission statement:

At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders.

We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.

Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle.

Autism Speaks. It’s time to listen.

Let’s start with the first line. I don’t struggle with autism spectrum disorders, any more than I struggle with being queer. I struggle with stigma. I struggle with systematic discrimination. I struggle with being erased from discussions about autism. I struggle with being silenced. I struggle with being expected to pass for neurotypical in this society. A lot of these struggles are being exacerbated by Autism Speaks, when they talk about people like me being an “urgent global health crisis”, a hardship, and a goddamn puzzle.

Also, take a close look at that second paragraph. We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism. In other words, your son and I have no right to exist. We’re a problem to be solved.

Do you think autistic people can be so easily separated from their autism? They cannot. Autism is a part of who I am. I don’t even know how to answer questions about what autism is like, because I have no idea what the neurotypical experience is like to compare.

Do you even understand what the implications of a cure are? Let’s pretend a cure is as simple as a little white pill with no side effects. In theory, nobody would be forced to take it. That’s just in theory, though. Most of the recipients would be young children, whose parents would consent for them. It doesn’t matter whether the child wants to change their entire personality. All that matters is that the parents don’t want to deal with raising a child who is different.

Even adults would be forced into taking the pill. How? It’s simple. With that pill in existence, people and governments would have an excuse to cut off services to autistic adults, making it difficult to impossible for them to live without taking a pill that would change their entire being. There’s other ways to force people to take unwanted pills, with hospitalization and imprisonment being among those methods.

But, of course, the cure will not be a white pill. Pills don’t change how people’s brains are wired. It also will have side effects of some sort. Everything in medicine has side effects, even penicillin. For something as pervasive (protip: there’s a reason it used to be called pervasive developmental disorder) as autism, these side effects might be major and probably worse than anything autism-related.

But never mind all of that. All of this talk of a cure serves to do is erase actual autistic people.

Autism Speaks talks about listening and bringing the autism community together, but I have never seen a bigger set of lies in my life. Autism Speaks has no autistic people in its organization. If you click on the advocacy tab on their website, their is absolutely nothing about self-advocacy. Not only that, but Autism Speaks actually silences any autistic who speaks out against their organization. It has actually threatened to sue an autistic teenager who made a parody website.

If you want to do me and your son any favors, support a more worthy organization, like the Autistic Self Advocacy Network. Listen to the experiences of the actual autistic people. Don’t teach your son self-loathing. Don’t be patronizing. It’s really not that difficult to be a good ally, provided you listen more than you speak.

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