Let’s Talk Autism

I am autistic. I’m an autistic person. Like most people on the autism spectrum, I prefer identity-first language to describe myself. Because I don’t “have” autism, I am autistic. It’s as much a part of my nature as being transgender or being queer or being white.

I didn’t know this for a long time. I first learned about Sensory Processing Disorder and Asperger’s Syndrome, both specific variants of experience that are under the umbrella of “Autism Spectrum Disorders,” when I was 18. I was certain that those labels described me, and the way terry cloth, in particular, has always made me have a panic attack. (Just one symptom, there are more).

I also presented female, at the time, and am highly verbal,  able to be social, hyper empathetic and reasonably able to adapt and/or mask symptoms of Autism in order to survive in a world designed for people who are not autistic (the proper term for that is allistic, btw). So I was told there was no way I could be autistic. And I believed it, because I was 18 and sheltered and not sure how to advocate for myself and not sure I could trust my own perceptions because I’m autistic and that’s literally how it works.

A decade of anxiety, oddness, ruined relationships, learning to be clarion-clear in emotional communication, always getting it wrong even when I was doing everything right according to the books, stress that destroyed my body, depression, job hopping, unresolved panic and unhealthy coping mechanisms later, I was in a job that was intentionally making my life harder trying to convince me to quit before they fired me.

The problem was that I was great at the job, I just wasn’t great at playing political games and hiding my upsettedness with the backhanded, unethical, amoral games they were playing with our clients and the staff (bitter? me? neeeeveeer). So they took every single thing I said was bothering me, and made it worse. It was bothering me not to have a set work location, even though everyone else did? Cool, I now have four locations and am on-call for any one of them at any time, even on a day I’m usually somewhere else. It was bothering me to be the only one without a set schedule? Cool, my schedule is getting switched every week now. I’m upset at the fact that they’re literally playing semantic games to pretend they’re ethical and legal? Cool, they’re not letting me discuss my thoughts on the “collaborative change,” either in open forums or in one-on-ones with my supervisor. I was miserable. And because I didn’t know that there was an actual reason I couldn’t handle that much transition and ambiguity the way everyone else was, I thought it was just my fault. I believed them when they said I just needed to try harder.

And then I sat through a training on positive behavior support, where I was accommodated (with fidget toys, being able to stand instead of sit for 8 hours, etc) and Oh. My. Sweet. Jesus. THAT IS MY PROBLEM. I’m AUTISTIC! I have “typically female” symptoms of being autistic because I was raised and socialised female. I made a five page annotated list of the DSM criteria for Autism Spectrum Disorder and how it applied to my life, took it to two doctors and a therapist, and started pressing for a diagnosis. And I went to my boss, who is potentially the only good person in leadership at this particular place, and started working on accommodations.

That employment didn’t work out… because they weren’t willing to accommodate, and they weren’t willing to explain to me why what they were doing was actually ethical in the face of my belief that it wasn’t (hmmmmmmmmmm). But every employer since then, I have told “I’m autistic. These are the accommodations I need.” And when those accommodations are respected (and they’re easy to respect, I promise), I shine. In the yearish since I’ve left that employer I’ve worked for three other employers, increasing my responsibility each time (having more than one job is the new black). And I’m thriving. I’m doing work that is creative, enjoyable, and designed to leverage the autistic brain that I have instead of force me to be neurotypical. It’s wonderful. I’m seeking work again through no fault of my own (no firing! Just a lack of work!) and I’m sure that I’ll find another position that works with me because I no longer accept no as an answer to accommodations.

And still, every day, I am asked to “prove” I’m autistic by listing symptoms, proving impairment, etc. And I just wanted to say: This is my story. That I now have the information I need to help manage having an autistic spectrum disorder in a world designed for allistic folks, that I’m skilled in environmental accommodation for neurodivergence and have created a home and relationship in which I am relaxed and therefore better able to mask in a business setting, that the accommodations I ask for are things like “have my full attention and make sure I’m taking notes before you give me task lists, or email me my tasks” and “please don’t yell, raise your voice, gesticulate wildly, etc” rather than “please get me a special chair,” none of these things invalidate that I am autistic.

Rather, they are the signs of being my specific type of autistic, self-aware, and properly accommodated. Autism isn’t always being unable to hold a conversation or eye contact. It certainly isn’t always or even usually being non-verbal. It doesn’t always mean “lacking in empathy,” (and frankly it’s really hurtful that you assume that).

Sometimes, Autism looks like me. It looks like “I can’t wear socks that are a certain weight because it makes me anxious.” It looks like, “I can’t hear you if you’re raising your voice above a certain pitch because I can’t process your words.” It looks like “If I don’t see something in written format, I can’t process it.”

And many, many more variations, some of which apply to me and some of which don’t. All Autistic people are valid. All Autistic people deserve support. All Autistic people deserve being believed when they say they are Autistic. And every single person deserves to be heeded.

 

When you’re sharing things on Facebook, or instagram, or on blogs, or whatever, remember that Autistic people can speak for themselves (and the ones that can’t, usually have another way to communicate if you look for it). Listen to us. Let us lead the conversation. Ignore hate groups like Autism Speaks (who think it’s fine that parents abuse their autistic kids because “just so hard to handle,” don’t allow Autistic people to have a voice in their advocacy, etc) and Light It Up Blue (because, not just boys have autism and  ignoring female-presenting autism is a thing that makes people like me suffer for decades instead of getting help). Listen to your autistic friends when they tell you what they need. Listen to the Autistic Self Advocacy Network (ASAN), and use #RedInstead as the hashtag to share the words of actually autistic people. We’re here. We’re talking. We need you to use your platform to amplify our actual voices instead of those who would try to silence us. And we need you to know that sometimes your picture of autism doesn’t include us– but that just means you need to widen your frame.

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