Thursday, August 11, 2011

"The Devastating Effects of Autism on My Ego, or the amazing reality of being autistic before people knew it was a thing"

Middle school was rough. I was thirteen and still liked to dress up and then carefully arrange my dolls. I was obsessed with Buffy the Vampire Slayer, collecting every piece of media I could find that might be vaguely related and stockpiling it (for what, I still don't know). I had only learned to wear jeans in seventh grade, the fabric harsh and too unyielding to be properly comfortable, but the bullying for my preferred stretch pants was even less comfortable.
I was in eighth grade English when my teacher made an announcement. The school was going to be trying an integration program, with a classroom for artistic students who would be in our elective classes but not the core curriculum ones.
I seethed. How could I not have been invited? I was familiar with semi-integrated education already; I had been invited to go to a separate school for the Very Special Needs academically gifted kids. I was the best artist in my class, for sure! Had I not drawn and redrawn the same picture for most of fourth and fifth grade? That picture was amazing! Every one of the hundreds of copies! How dare they ignore me?
Later I found out the teacher had actually said "autistic." She was from New England and I'd never heard the word before. It's funny now.

It's funny because I am autistic. I'm apparently what they call "high-functioning," but I don't like the term very much; the division feels artificial and the inherent value judgement is off-putting. I'm not less autistic, it's really just that I communicate in a way allistic people seem to understand most of the time.
There are as many ways of being autistic as there are people on the spectrum. Autism is described in the medical model of disability as a series of deficits, things that make us deviations from Regular People, but I don't think that's true. Autism is a neurodevelopmental difference, a way of experiencing and thinking about the world that is certainly different, but not inherently bad. The disability part enters into things because the world was not designed by or for us, and as a minority group we are expected to conform to the majority, not the other way around. Autism accounts for the parts of me I dislike--low frustration tolerance, perfectionism, difficulties making friends, my propensity for depression and anxiety, my propensity for lists and em-dashes--and the parts I like a lot--loyalty, determination, artistic talents, a gift for learning, my propensity for lists and em-dashes--because you can't separate out autism from me. Autism didn't sneak into my room when I was small and steal me away. It's just a word to describe how I interact with the world around me. Just a word. I sometimes think autism makes me inherently existentialist.
            Being autistic means that I experience the world differently than most people, and not in a solipsistic way. There are sensory overloads, a world too bright and loud and full of textures, touching and grating and soothing. Things other people seem to find effortless, like reading facial expressions and making eye-contact, are difficult or distracting or downright painful. I can spend hours engrossed in reading about a favourite topic, unaware of pressing physical needs like hunger, and I communicate my enthusiasm in hand-flaps and wiggles and relevant echolalic quotes. My particular blend makes learning music by ear effortless and by written sheet music nearly impossible, while I prefer written instructions for academic or job-related things and watch TV with subtitles whenever possible (autism, by which I mean me, definitely has a sense of humour). It can be hard to make friends, but I keep the ones I have close, and love them dearly. I keep a planner without the school or high-powered career to warrant it, lists and schedules and therapy appointments all crammed in together because I invariably will not remember them--but my planner will. I get overwhelmed and scared and ecstatic and furious and many more besides, though I struggle to find the words for them in the moment. Words spill out onto my computer screen even when I can't sustain a spoken conversation or get lost in the pattern of the wood grain behind my interlocutor.
I was asked to write about what it's like to be autistic, with the guidelines of the DSM to focus the prose. It's hard, now, because I don't think going point by point for all the ways I can be seen as damaged is a wise way to build my identity or to speak of it to strangers. I am not a broken allistic person. I am not a collection of deficits wrapped up in skin. I am autistic and I use that word deliberately in the adjective form.
            I am just like you. Only, maybe, not.

- Ali St. James

Please see comments below to hear Ali's description of the term "allistic"


  1. Ali clarifies what "allistic" means: "Allistic is a neologism that is a few years old, created by the autism community (that is, by autistic people) as the antonym for autistic (the Greek roots are antonyms). We feel that people can be not-autistic and still neurodiverse, like if they have ADHD or synesthesia or are bipolar, so we wanted a word that specifically meant not autistic rather than the implied normal of neurotypical." Thanks Ali!

  2. Ali, your posting was extremely insightful. I really enjoyed your perspective and hope to read more from you!


  3. Brian, you can read more on my blog,

    Molly, thanks so much for posting this!