We’re honoring Autism Acceptance by publishing April Accommodations—meaning adjustments that other people can do for the autistic people in their lives. (For the flipside, as in things that make life harder for autistics, please see our Autism Checklist of Doom.)
Today we are talking with Grace Trumpower, who is autistic, uses AAC (a communication device), and has cerebral palsy and autoimmune conditions.
What is a small switch in behavior other people can make, to ease your life as an autistic person?
Listen to me. Please. I went to therapy for countless hours over countless years to be able to identify and express my needs and now that I finally can, it seems like it doesn’t matter.
If I leave a party early due to overstimulation, people say “I bet she left because she doesn’t like me” and I am devastated because I hurt my friend’s feelings and literally nothing can change their mind.
If I use my AAC device because it helps me stay regulated, people say “Put that away. You can talk. I want to hear your voice.”
If I go to the doctor and I say “I am hurt”, they say, “You are not screaming, so you must not be in pain. Go home!”
(When I am in a lot of pain, I tend to have a lot of self injurious behaviors. These behaviors are interpreted as being “just autism” and not a divergent expression of severe distress.)
Then I do go home. And I get sicker. I get so sick that I nearly die.
They say “Why didn’t you tell us about this?”
This time, I do scream.
I am a woman (or more accurately, I am someone who is perceived to be a woman.) and women are meant to be friendly and agreeable, even submissive. I am multiply disabled and disabled people are meant to comply to the demands of their abled superiors. So I put everyone else’s wants above my needs. No one listens. And because no one listens, eventually I stop speaking.
How will this accommodation make your life easier?
You can only push your needs down so far before you just can’t take it anymore. Then you burn out and you get tired. You get so tired that you can’t do much of anything. Sometimes people actually become catatonic. When I was catatonic, everyone believed me, but at that point, it was too late. I have to stand up for myself so that doesn’t happen again. It would be nice if I didn’t have to argue with strangers about the basic tenants of my reality.
If people believed me, I could use my autism to do great things. I would use my mind to advance science. I would help people with disabilities like me. I would get my degree and have a nice girlfriend and a warm apartment where everyone who visited me was allowed to be exactly who they are. And if anyone refused to be accepting, me and my friends would make them leave. People would have to bend for US for once and we could just exist.
What is one thing that brings you joy?
Something that brings me joy is…well, everything. The little things. The lights and sounds and colors of the world. One time I saw an especially brilliant moon and I sat outside for three hours. People kept saying “it’s just the moon” and I felt bad for them because it was “just the moon” but it was THE MOON. I’ll be the first to say that I struggle a lot, but I would never, ever give this up. Not even for a billion dollars.