Growing up, the sport I was pushed to do most was swimming. My mom spun it as being a strong swimmer was a safety issue, but I think learning the four various strokes eventually stopped being about safety and started being an athletic endeavor. I started in the five-and-under group, which swam their practices in the earliest slot—why, I don’t know or understand, because it was always the coldest. I remember my lips turning purple because I would be so cold. Years later, a friend told me he didn’t have to do summer swim league after he complained to his mom that he was cold. My mom would give us cocoa after and make sure we had a towel, but we still had to get in the frigid water.
As we got older, we continued with the summer swim league and year-round swim team. Eventually, we started riding our bikes to and from practice in the summer, since our mother valued her beauty sleep, as she put it. Looking back, I wish I’d been given swim gloves with Vaseline and swim booties—the silicone kind, also with Vaseline. Both would have made the swimming experience much more pleasant. I liked being in the water and doing backstroke. I enjoyed practicing with the other kids in the neighborhood.
The problems that made swimming unpleasant were the sensory issues—my fingers and toes wrinkling after a short time in the water—and the pressure that came with competing and comparison. I didn’t know I was asthmatic at the time, or about my hEDS. I just remember coughing a lot once I got out of the pool and how hard it felt to coordinate my extremities during butterfly and breaststroke. The pressure of being timed removed the joy of being in the water.
I share my experience because I think it’s important to spark the joy of movement and sports in young children without crushing that joy. I still love getting my heart rate up, even if it is in a different manner.
I love using machines such as ellipticals and treadmills. They have been instrumental in getting my anxiety under control in recent years. Unfortunately, during a recent bout of PT, I triggered an old knee injury and I’m not able to use those machines at the moment. Now, instead of using the machines I used to love, I go for walks on flat, hard surfaces around my apartment complex. When I go to bed early enough, I take advantage of my gym membership by using the recumbent cycle bike there, which doesn’t hurt my knees. Even with the cycle bike, though, I have to be careful. My joints don’t love the resistance being set too high.
The idea that exercise should hurt is, in my view, highly ableist. If I hurt my knees because I want to use a higher resistance, I won’t be able to exercise for a day or two after. The goals should always be disease prevention and promoting good long-term health. If I’m fainting, triggering mast cell activation, vomiting, or damaging my joints, my health is not being furthered by whatever exercise I’m engaging in. I have to be extremely careful and methodical with how and when I exercise.
As much as I love being outside, during the summer, I pretty much can’t be outside because I’ll start feeling ill. If I’m doing too much of any kind of exercise, I start coughing, my nose starts running, and then I start wheezing. I take antihistamines year-round, but I still follow up with my two inhalers, which help. I’ve started breaking up my workouts into two separate ones so that I can squeeze more movement into my days. I don’t love any of this, but it’s what I have to do in order to fit in the exercises that are important for my well-being.
My experience has taught me that adapting movement to my own needs is not just okay—it’s necessary. Exercise should support health, not undermine it. The narrative that exercise has to hurt or push you to your limits is not only ableist but also counterproductive for many people. We should all have the freedom to move in ways that work for our bodies, our health, and our lives.Unnecessary pressure to compete. Very few young athletes will go on to compete at the collegiate or professional level. Those who love and thrive in a competitive environment should, of course, have the opportunity to do so.
Creating inclusive, noncompetitive spaces for young people and athletes is essential for fostering a lifelong love of movement. When we focus on teaching proper form and encouraging each individual to improve their personal best, we shift the emphasis from comparison to self-growth. Instead of ranking athletes as first, second, or third, we can celebrate achievements such as learning a new skill, mastering a stroke, or setting a personal record. Rewarding these personal milestones with medals or ribbons not only builds confidence but also motivates young people to keep challenging themselves in a supportive, pressure-free environment. This approach nurtures intrinsic motivation, resilience, and a sense of belonging—qualities that benefit athletes both in and out of sport. These are skills people can carry with them for a lifetime and that encourage good health.
Living on the Spectrum 
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