Autism — a day in the life
This is a modified version of the Autism Awareness Month piece I first wrote for my company’s Diversity, Equity, & Inclusion newsletter. Opinions expressed are solely my own and do not express the views or opinions of my employer.
It’s Monday, so I know exactly what’s for dinner. I know exactly what’s for dinner every other day, too, but Monday is easy because it’s the same as Wednesday and Friday — the same sunflower seed butter sandwich that I’ve had on those days for the past five years. It’s utterly delightful, every single time, a broken record that my brain never registers as anything other than a novel and perfect piece of gustatory music. But to get to the sunflower seed butter, I have to get through the day.
The day always starts with a walk (I have tactical gear for every combination of weather, including the kinds I shouldn’t go out in), and I like to joke, “no walkie, no codie!” to my engineering team at the daily standup meeting when they inquire about it on a particularly blustery morning. I secretly wish it really was a joke, and I try not to think about the day I get paged or otherwise interrupted in some way, and how, to my incredible embarrassment, the whole day and my whole self would be visibly ruined by this simple blip in the schedule.
I hate myself for this. But on the bright side, my walk is a great opportunity to stim.
“Stimming’’ is what we on the autism spectrum call self-stimulatory behaviors — often repetitive things, like bodily movements or sounds. I myself am the occasional hand twitcher, unfortunate skin picker, excited fist bumper, shameless happy dancer, semi-embarrassed echolalia exhibitor, and, when it comes to said walk, a serial replayer of the same few songs, where I lose myself in intricate mental music videos of my own making. I think in pictures rather than words, so these solo adventures often come much easier to me than, say, a casual conversation.
Provided I’ve made it home in one piece (motor clumsiness is another thing you might find among us, and sidewalk ice season is the bane of my existence), my workday usually starts with more routines, some very much like anyone else’s, and some so arbitrary that you probably don’t want to hear about them here. If they go uninterrupted, my focus will be second to none, and I’ll churn out a high-pointed software story in a matter of hours rather than days, all while listening to the exact same song on repeat. But if a relative drops by the house unannounced, or my partner innocently asks if we can order the takeout at six rather than seven, or if — more streets away than any sane person should be able to hear- some sort of audible road repair is going on, my mind goes completely wonky again, and I’ll have to rely on another peak of semi-robotic clarity to get anything done.
It’s a lot of ups and downs like that — the ‘spiky skill set’ common to a lot of us autistic folks. I can find precisely where the system broke in a few minutes, but I can’t articulate it to you in any coherent way until much later. I can code something to your exact specifications, but I’ll spend the majority of the time just trying to rip those specifications out of you, with zero room for the abstract. I can look at a photo and quickly reproduce a delightful rendition of it in Google Drawings, but I can’t park a car in the lines or figure out when to speak without interrupting you at least 25% of the time. Good sensory experiences, like a slice of cake or the heat of a fire, are indescribable ecstasy. But bad ones, like the seam of my sock being the slightest bit off, or the sensation of a ceiling fan against my skin, are hell on earth.
In general, the positives and negatives of this zoom lens I call life tend to balance themselves out. And when they don’t? Well, that’s what weighted blankets and solitude are for! I wish everyone could experience the little things — holiday lights, buttercream frosting, a gloriously hot shower, or even the fantasy world in my head — the way I do, and the high points of that ‘spiky skill set’ are super useful if you happen to really enjoy something like programming (or whatever suits one of your spikes) and need a way to pay the bills. That seems to be working for me, so far.
So, that whole day in the life thing aside, who are we, exactly?
Well, we’re about 1 percent of the world population, and well over 3.5 million Americans. We’re 1 in 54 kids in the United States, and we span all races, genders, and socioeconomic groups. Many of these groups still go underdiagnosed when they don’t fit into the robotic, usually white, and overwhelmingly male box that Hans Asperger first told you about — and that a lot of media portrayals still, quite sadly can’t get enough of.
We’re artists, teachers, students, engineers, CEOs, and caregivers, among other things, some of whom embrace the term ‘autistic’, and some of whom might not. Our support needs might be high or low or fluctuating or in between, and we often face disproportionate levels of unemployment and isolation in a world that wasn’t quite designed with our wiring in mind. Nevertheless, we love, feel (contrary to popular belief, we are NOT unempathetic beings), hope, dream, and persist, like anyone else.
If I could bring that last point home with anything, it would probably be a little anecdote.
When I was a teenager, I sometimes took care of another autistic boy my age who would have been considered ‘low functioning’ on many accounts. I would drive him to the same places for the same afternoon outing, week after week: lunch at Cicis Pizza (I can still smell the pepperoni slices now, a sensory overload of my own), and a walk around the local shopping mall. He (okay, fine — we) loved to ride around on the colorful little mall train probably meant for a much younger clientele. And one day, near the very end of the ride, he leaned in to kiss me (if your brain has gone on heteronormative high alert here — as we shouldn’t, but do — it might be useful to this article anyway to mention that the writer, like many autistic people, is trans).
But yeah. A kiss, like any regular teenager — with regular, human, teenage feelings.
If you want to learn more about growing up autistic, or just want to see some good media representation, my personal favorite is the TV series Everything’s Gonna Be Okay. More importantly, just engage with us! Ask us! Some of us are happy to talk your ears off about our special interests, and we’re often the most loyal and down-to-earth friends you’ll ever make.
Don’t take my word for it, though — as we say in the community, if you’ve met one autistic person…well, you’ve met one autistic person!
