Posted by: Emily | 18 June 2013

I am proud to be autistic

A page filled with handwritten repeated alphabets, letters, and numbers, in English and Greek, as well as some Greek poetic text.Today, June 18th, is Autistic Pride Day, and today I am proud to be an autistic person.

At age 27, I got an actual autism diagnosis, confirming something I had been starting to explore seriously for months. But even if I didn’t know its name at the time, autism was something I knew I had been living with all my life. Now that I know what it is, it is something I am continually discovering how I live with, and something I am learning how to become proud of.

I have a very clear memory from when I was in first grade of another student looking over my shoulder and laughing at me. I wondered why, and they pointed to the page of my journal I was writing in. I had written the alphabet several dozen times on the page, completely filling it up, and what’s more, I had not really been aware that I was doing that. It was just something to keep my hands busy while my mind wandered elsewhere. Writing the alphabet repeatedly would become one of my primary methods of stimming—getting sensory stimulation—but I would only learn that word much, much later. It’s a habit I maintain to this day, though I’ve added several other alphabets to my repertoire besides the twenty-six (fifty-two, counting capitals) character English alphabet. I am proud of my alphabets.

When I first posted pictures of some of the pieces of paper I do this kind of stimming on to the Internet, the responses I got were overwhelming. I learned I was not the only person to do this kind of thing; I’d been afraid that I was alone and, well, weird. In turn, this led me to talk more openly about my autism, which led me to learn more. I learned about the ways other autistic folks stim, and started to realize other behaviors of mine as stimming. Having a word for it gave me knowledge, and knowledge is power. I am proud of my stimming.

I always have had a way with remembering things: whole texts I can repeat from memory after reading them once, entire episodes of Star Trek I can quote from memory, that kind of thing. When I was in first grade, in the same notebook as I wrote alphabets in, I reproduced from memory much of the manual for a computer game I had (OIDS, if you remember that one), complete with screenshots and graphics. Sometimes I stim by writing verses I’ve memorized from Greek or Latin poetry, or Hebrew texts. I also absolutely love maps. When I was young I asked for a Thomas Guide of Los Angeles County for Hanukkah one year, and I proceeded to devour the entire book to the point where I could navigate the arterial map of the Southern California freeway system in my sleep years before I could legally drive a car and I could quote chapter and verse (or rather, page and grid) where major intersections were in the book throughout the Greater Los Angeles area. I am proud of my memory.

When I was younger, sometimes I scratched myself on my chest or my legs, scratching so hard I would cut myself, in places I knew nobody would see it so I wouldn’t get asked uncomfortable questions. It wasn’t self-harm, but just another way to stim, to get sensory stimulation. Nowadays I tend to rub and scratch my legs, to the point where hair grows on the inner side of my shins but the outer sides are nearly bare. Sometimes when there’s nothing else for me to occupy my hands or body with I rock from side to side or back and forth. My hands always have to be occupied. I have a chain mail rainbow bracelet a friend made for me, which I often play with when my hands are not otherwise doing anything. If my hands are not moving, I feel not right, frustrated, even vulnerable. I am proud of my hands.

I have always been easily overstimulated by touch. When I was young, learning to hug other people or be touched, especially when I was not expecting it, was a big challenge for me—one I was afraid to seek help for for fear of being thought weak or strange. Even now, being touched unexpectedly or from behind when I can’t see the person touching me can cause me physical pain. Sometimes shaking hands with another human being is physically painful. How much the more so do I have trouble with touch in the Deaf community, where touch can be used in ways that would be considered rude in the hearing world. Combine this with anxiety and panic disorder and I am prone to shutting down or panicking from simple touch overload. But I am learning where my boundaries are and am getting better at articulating them and at dealing with them. I am proud of my sense of touch.

On the subject of touch, one of the ways I have dealt with this is through stuffed animals—a topic about which I am writing more extensively in my upcoming book. I used to have to sleep with three stuffed animals: one in my arms, one facing ahead of me, and one behind me facing backwards, so that when I turned over I would still be protected by them. Now I can get away with only one (in my arms) but when I have a bad night I often need two (one behind me facing backwards) so that I can fall asleep. I have gone through phases when I have carried around a stuffed animal with me everywhere. In high school, it was a stuffed gibbon. Now it’s a stuffed rabbit named Cady, who is there for me to touch and feel and get sensory stimulation from, but also for emotional support. I am proud of my stuffed animals.

Sometimes it’s hard for me to remember that I did not become autistic the day I actually got a diagnosis, and sometimes it’s hard to remember that my life as I knew it didn’t end on that day. I’m still the same person I used to be, with the same coping mechanisms that have enabled me to survive and even flourish in the larger world. Autism for me is a different way of seeing that world, a different relationship between my brain and everyone else than that of most other people’s brains. I am marked by differences because of my autism, but as I wrote on my post for Autism Acceptance Month, I don’t need to be cured; I need to be loved. As I learn to recognize and name and appreciate my differences, I learn to not be afraid of the word “autism” or be ashamed of the label “autistic”. I learn to love myself more for my autism and to be proud of myself as an autistic person.

The more I learn about autism now, the more I can retrofit, as it were, my understanding of it onto many of the things I did as a child. Of course, in retrospect, it’s easy to say “Gosh, how silly to have missed that,” but the truth is neither I nor anyone in my family nor anyone in my community were really looking for such signs, and we didn’t really conceive of it in terms of an autistic spectrum. It just wasn’t really on the radar screen, and I can’t fault anyone close to me for failing to connect the dots, given how well I learned to “pass” (ugh, I hate that word) as neurotypical. Yet another way I learned to do self-preservation, by laying low, by not making waves, by extrapolating (correctly or incorrectly) what it was and wasn’t “okay” for me to talk about in any particular situation. For example, I have trouble looking people in the face, and even more trouble accurately reading facial expressions, but I learned how to cover it up and not draw attention to it as a child. Same kind of coping mechanisms as for being trans, and as it turned out for a whole mess of other things in my life too. But what I did, I did because I had to, in order to survive.

This situation is changing—slowly, slowly—in the world today, and I am glad every time I see such a change affect someone close to me or someone whom I can see benefiting from it. Awareness is growing and acceptance of autism as simply a different way of being wired rather than as a disease to be cured is on the rise. Recognition that one can be autistic and have other mental and psychological stuff going on is increasing among the medical and gatekeeper community, and I don’t get nearly the amount of crap to deal with at the intersection of autism and disability as I had feared I would. The harmful vaccination nonsense is being debunked and people are starting to notice. Organizations like the Autistic Self Advocacy Network and events like Autreat are gaining in recognition and popularity. At least, this is all how I feel on my good days—on my not so good days, it’s harder to see things this brightly. But overall, I want to be optimistic.

And today I will choose to be optimistic: because today is Autistic Pride Day, and today I am not ashamed stand up and say I am an autistic person. Today I am proud to be autistic.


Why not read another wonderful Autistic Pride Day essay from Nat at Graphic Explanations?


Responses

  1. I write letters on my papers of whatever I am thinking of or talking about! (sometimes it ends up awkward, because people sometimes take the wrong meaning from me doodling their name while I am talking to them).


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