A Letter to Autism Speaks

Dear Autism Speaks,

I notice that you don’t have an email address for autistic people, so I have to make do with the one for parents of autistic children. That’s the first problem. My second problem? Autism Everyday. In front of her autistic daughter, with no regard to the fact that she could hear and was a human being with feelings who was probably filled with guilt and shame because of the way she was demonized, a mother talked about how she considered putting herself and her autistic daughter in a car and driving off of a bridge and that the only reason she didn’t is because of her non-autistic daughter (implying that her autistic daughter was lesser, not good enough). And you condoned this. You accepted this as okay, as all right, as something other than an example of how warped and deformed most people’s perceptions of autism are. We are not warped. We are human. My third problem is that you do not treat us like we are human. I say that I’m not sure who I’d be without my autism and you refuse to accept that. Against our wishes, you focus on curing us so we fit society instead of fixing society so that instead of just saying that we want diversity, we actually embrace diversity and focus on making those with autism more comfortable in social settings instead of making everyone else comfortable with us.

You gag us and tell the world that you speak for us. No. You have not earned that right.

You don’t get to speak for me. You don’t get to speak for my autistic cousins, who are 13, 12 and 8 respectively. You don’t get to speak for my 7 year old sister. You don’t get to speak for my 2 year old brother, who is currently without a diagnosis but behaves the way I remember my sister behaving and my parents remember me behaving. You don’t get to speak for any of us.

I don’t need a cure. I have a fairly good life. I have music that I enjoy. I like to sing. I like to read. I’m good at math. I write for fun. I have a vast vocabulary for someone my age and I grasp many difficult concepts fairly easily. The part that is most important for you to know is this: This is not “despite” my autism. The things that make me myself are not divided into “really me” and “autistic me.” Autism is part of who I am in the way that being female is part of who I am.

I only recently came to this realization. Until then, I was trapped in a vortex of shame and suppressed emotion because I was supposed to be like everyone else, I was supposed to understand those minute social cues, I was supposed to make eye contact and I wasn’t supposed to flex my fingers and bounce my foot because I was supposed to be normal and normal people are like that. Thankfully, my family never accepted your twisted philosophy and have made home an oasis of calm where people accept me for who I am- all of it.

I am including below links to posts where autism really speaks- not through the mouths of so-called “experts” but through the mouths of the real experts: caring parents and those who live with it, thrive with it (not despite it), every day.

https://loveexplosions.net/2013/01/30/the-cost-of-compliance-is-unreasonable/

https://adiaryofamom.com/2013/11/12/no-more-a-letter-to-suzanne-wright/

https://musingsofanaspie.com/2013/06/18/a-cognitive-defense-of-stimming-or-why-quiet-hands-makes-math-harder/

https://juststimming.wordpress.com/2011/10/05/quiet-hands/

https://thecaffeinatedautistic.wordpress.com/2017/04/04/autism-speaks-still-does-not-speak-for-me/

 

Sincerely,

Amber Lewis

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