How I Made Friends With My Autistic Body

Illustrated by Sydney Hass
When I was in kindergarten, my parents took me to an orthopedic clinic to treat the way I walked. I had a strange gait for a child my age, toeing in to the point of almost tripping over my own feet, and the angle threw my legs into their own idiosyncratic rhythm, lodging whatever I was wearing into a perma-wedgie that made me feel like a more bawdy version of The Princess and the Pea. Still, my mom and dad weren’t particularly concerned. They thought the appointment would be a mere formality, because my mother had gone through her own minor physical issues as a child. She just assumed that I was, quite literally, following in her footsteps. “We’re going to a new doctor who’s going to look at your feet and tell you that you’re pigeon-toed, just like I was,” she explained in the days leading up to the appointment. Picturing the actual bird, I argued that I didn’t have claws or webbed feet. “It just means that you toe in,” she said. “It’s not serious, but you might need special shoes for a while.” Once the doctor looked at my feet and we ordered my shoes, she promised, we could go to the mall and maybe get a little treat. On the day of the appointment, I found myself in a small office that was lined with brown orthopedic loafers. Two specialists stared at my feet as I sat, stood, and walked around as instructed. Just as I was beginning to lose patience, they disappeared into the back room with the sneakers I’d worn to the clinic, a beautiful pair of pink Reeboks that made a nerdy kid who walked and talked differently feel legitimately cool for once in her short life. About 15 minutes later, they returned and said that they still didn’t know what I had, but the inch-thick walls of white foam they’d affixed to my beloved shoes would certainly fix it. But. They ruined my shoes. I was devastated. I mourned my Reeboks the way I might mourn a family member. I sobbed for days, and felt a physical pang every time I even looked at them, a grief that must have looked every bit as disproportionate and ungainly to unsympathetic outsiders as my stride. For the next year, I stumbled around on my Frankenstein shoes without any noticeable improvement. Deciding that I’d suffered enough, my parents lovingly scraped every last bit of foam off of my beloved kicks. As long as I wasn’t in any pain or at risk of injury, they’d just let me grow and develop the way that I was. Over the course of the next 10 years, the eccentricities of my gait became less pronounced, and only the most observant person could tell that I moved a little differently than the average person. The eccentricities of my personality, on the other hand, only grew more obvious. It took another decade, but at 27, I finally received a diagnosis that made sense, and realized that everything that had happened back then, from my walk, to my strong attachment to my shoes, to my painful aversion to any change, all had the same explanation: I was autistic. Most people don’t know that autism can have physical symptoms; I know I didn’t think about it. Ultimately I got tested because of the other signs that built up over the years: a tendency toward obsessive areas of interest, like the most minute details of the sinking of the Titanic (long before the movie came out) and the stillsuits of Frank Herbert’s Dune universe, and also the issues with eye contact and social cues. My walk, which had become far less noticeable over the years, only came up in passing during the assessment process. As part of the verbal portion of the testing, the therapist in charge asked one question about any issues I might have noticed with my gait. I hadn’t even considered that it might be related until he brought it up. I’d barely thought about it in years. “Oh yeah,” I said. “I used to swing one of my legs out to the side, and my hips wiggled strangely. I got tested as a kid and they never figured out what was up. They ruined my favorite shoes.” And then I went back to talking about the Titanic and Dune. Trouble with motor skills isn’t a defining feature of autism under most diagnostic criteria, but it is common among people on the spectrum. A number of studies conducted and published over the past 20 years have found some level of motor dysfunction in almost all autistic people. Coordination, proprioception (which is basically your internal sense of the space around you), balance, and developing an efficient gait can be challenging for us. Reading up on these issues was like looking over every Phys Ed report I’d ever received. I couldn’t catch, kick, or throw to save my social life. I constantly misjudged my body’s position in relation to objects and other people, and frequently bumped into them. Standing on skates or keeping a bicycle upright seemed like superhuman tasks. And then, of course, there was the walking thing. Autism is often described, mostly by people who don’t have it, as being trapped in your body. I don’t want to speak for all autistics, but at least in my case, I’m no more trapped in my body than any other human being is. I was never a captor, but for a long time my body felt like it belonged to another person, or actually was another person who I just couldn’t figure out how to communicate or connect with.

for a long time my body felt like it belonged to another person, or actually was another person who I just couldn’t span out how to communicate or connect with.

I saw other people having fun with sports and exercise, and I wanted to feel that way, so I began trying to befriend my own body through haphazard trial and error. My kind, pragmatic parents had taught me to approach physical activity on my own terms. After the great foam shoe disaster of the mid-'80s, Mom and Dad concluded that trying to fix me was harming me more than letting me be. If I showed an interest in something, like street hockey or skateboarding, they helped me work on my skills in a quiet, pressure-free environment. They also made it clear that sports were only important if they had a positive influence on my life. (I know. My parents were great.) So, armed with the nonjudgmental approach my parents had instilled in me, I started to try various solitary activities. I took up Pilates and weightlifting because I loved (slowly) learning the exercises involved and I liked working next to people without being pitted against them like in team sports. I eventually went on to pursue certifications in both disciplines so that I could help other people with backgrounds similar to mine learn that exercise didn’t have to involve pain and embarrassment. I tried combat sports like Brazilian Jiu-Jitsu, Muay Thai, and competitive pillow fighting, and enjoyed the ritual and technique involved, but couldn’t deal with the type of quick thinking that sparring and competition demanded — and eventually moved on. A couple of years after my diagnosis, I officially took up running, which became both my favorite hobby and greatest challenge. I’d flirted with running for years because my mom was a runner, but always found it far less pleasant in practice than theory. Thanks to what I’d learned about myself as an autistic person and what I’d learned about fitness since then, though, I was able to approach the activity more methodically and patiently this time. I experimented with everything from stride to shoes to clothing. Taking the advice of an autism and learning disability expert, I ditched my iPod. I hadn’t even realized how much the music had been pushing me toward sensory overload until I started to listen to my own breath and the crunch of the gravel beneath my feet instead and noticed an instant change in my heart rate and mental state. I learned to pace both my running and my expectations.

I learned to pace both my running and my expectations.

Eventually, I was able to find a style and a rhythm that worked for me, and then I was able to build on it to the point where I could somewhat comfortably run six half marathons. I’ll never be a great competitor, but running has become something that I can turn to for health, anxiety management, and, when I’m feeling particularly inspired, fun. It took me more than 20 years — and a lot of distance from the humiliations of regulation gym class — to find physical activities that didn’t fill me with dread or defeat. But I did it. Now that I work as a personal trainer, this is what I want for my clients more than anything else, whether they’re autistic or not. I want them to get to a place where they’re moving, in whatever capacity works for them, not because their body is something that needs to be punished or brutally forced into a certain shape, but because they want to treat it well, because they want it to thrive. I wish more people understood that this is what physical fitness can be about. This is not an inspirational story about a woman who overcame her disability, or learned to move in spite of it. I run and exercise the same way that I do every other thing in my life: with autism. There’s a dangerously prevalent assumption in both fitness culture and autism treatments that there’s only one way to be healthy or better, which leaves people hurting themselves in order to make their bodies fit this narrow-minded standard. As someone who lives in the middle of that Venn diagram, I can honestly say that I’ve never seen a fellow autistic or exerciser benefit from a program that wants to “fix” them. The only true progress I’ve seen — and experienced — has come from actual acceptance of an individual’s unique body and willingness to work with it as is. No matter who or where we are in life, our bodies don’t have to be our enemies. We can treat them with the same kindness and respect that we’d afford another human being and genuinely learn how to befriend them and exist in them as we are. They’re the only bodies we’re ever going to have, after all. So we might as well learn to get along.

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