Hands down, the most surprising thing I’ve learned in the course of learning about autism is how being autistic affects me as an athlete—and, by extension, my overall health and wellbeing.
There are A TON of ways that being autistic can affect these three things. For starters, autistic people experience significantly increased rates of ALL major psychiatric disorders, nearly all major chronic medical conditions, and a number of rare medical conditions. But that’s a different deep dive for a different day.
In the rest of this post, I touch only on the ways being autistic affects me as an athlete. For good measure, I feel it’s important to note that not every autistic person has the experiences that I outline in this post, and there are many experiences other autistic folks have that I don’t—and that I don’t mention here.
I’ve been CrossFitting and weightlifting for a long time. Almost 10 years. I’ve struggled to progress in both sports—to hit PRs, to master basic movements, to stay healthy (as in: uninjured)—the entire time. For a long time, I thought these struggles were mostly innate inability. For a long time, I thought I simply wasn’t cut out to be an athlete.
Aside from part of a season of T-ball in kindergarten, I didn’t play any of the standard team sports as a kid. I was active—I spent a lot of time outside riding my bike and climbing trees—but I was by no means an athletic child. I was clumsy, uncoordinated, kind of spastic, and not exactly social or a team player. I’m almost 36 years old and all of these things still describe me.
When I started CrossFit in January 2013 I was 26 years old. I had no real athletic foundation, to speak of. I’d done some cheerleading in my pre- and early teen years (not the gymnastics-heavy, competitive kind, just the regular cheer-for-the-local-team kind), and had been running a few miles a day for a few years. I’d never belonged to a gym, let alone a gym as intense as a CrossFit one.
Like many new gym-goers, I made a number of PRs pretty quickly. And then—nothing. No matter what I did, I wasn’t progressing. I spent hours in the gym each training day, and still: nothing.
Since learning I’m autistic, I’ve realized that my progress in the gym—or the lack thereof, really—isn’t rooted in some innate character flaw, or an inherently capable body. It’s rooted in:
- My autistic brain and how it works—differently, not deficiently or incorrectly
- The lack of understanding among the general population, and especially among coaches and clinicians who work with autistic athletes in the course of training, about what autism is and how it intersects and interacts with health, wellness, and athleticism
At its core, autism is in large part a different orientation to information and sensory stimuli. Autistic brains process, respond to, and engage with sensory input differently. Despite what the pathologized definitions of autism state, “differently” does not mean “deficiently.”
For the last 10 months I’ve been in physical therapy two to three times a week, for various issues and injuries. I know from these experiences that my brain and body are absolutely able to work together—I just need different cues, a different style of coaching, and more time to get there. In the rest of this post I touch on most of the ways that being autistic affects me in the gym.
Before we dive in: I want to reiterate that the things I mention here are not exclusively or universal autistic experiences—it’s not only autistic people who experience these things, and not all autistic people experience all of these things. The point is: autistic people are more likely to experience these things, the deltas are more likely to be greater for autistic folks, and autistic people are less likely to be believed or taken seriously when they communicate that they’re experiencing these things, which in turn exacerbates the issue and/or injury, and impacts overall mental, physical, and emotional health and wellness.
Inside the gym
Surprisingly, the regular sensory suspects aren’t really a problem for me in the context of the gym and training. In my life outside the gym, I need a pretty calm and uncluttered environment to stay regulated—neutral colors, natural light, silence, stillness, solitude, etc. Not so at the gym. For whatever reason, in the context of training, loud music, bold visuals, bright colors, fluorescent lighting, and the bustle of other bodies usually* don’t bother me—and when training (or competing) takes place outdoors, neither does the weather.
*I usually only get overwhelmed or annoyed in the gym if I feel rushed (I move more slowly between sets and pieces of a workout than most people), if I feel too visible, if I feel like I don’t have enough space, or if my preferred platform or rack or piece of equipment is taken or otherwise inaccessible.
The social aspect of the gym usually doesn’t bother me much, either. I think this is largely because the gym is the only place that can even remotely be considered “social” that I find (put) myself in, which means I have more social battery to use, because I’m not depleting it elsewhere; and because ultimately, lifting is primarily a solo sport. More on this in a future post.
Vestibular, interoceptive, and proprioceptive differences
In the context of training, many of my autism-related challenges boil down to differences in how my brain and body receive, process, and respond to vestibular, interoceptive, and proprioceptive input. Because like many autistic folks, my vestibular, interoceptive, and proprioceptive systems work a little differently (as do the other and better-known ones—sight, smell, touch, taste, and hearing).
That’s right. We all have at least eight senses, three of which many people have never heard of.
The vestibular system is responsible for balance, and plays a role in coordination. Interoception is the ability to sense the body’s internal states—things like hunger, tiredness, heart beat, respiration, needing to use the bathroom, pain, etc. Interoception also plays a role in our ability to understand and communicate our internal state. Proprioception is the ability to sense the body’s position in space, which, along with the vestibular system, affects things like movement and coordination.
There are a number of ways my vestibular, interoception, and proprioception systems affect me as an athlete. Mainly:
- Balance and coordination
- Experience and expression of pain
- Mind/muscle connection
- Motor planning and output
All of these things stem from differences in information processing. Like other autistic folks, I process information differently. Most common coaching cues don’t make sense to me, and it takes me longer to learn, master, and cycle movements.
Also: All of these things are tangled together and difficult to isolate. You can’t really talk about one without talking about at least one of the others. For the sake of trying to highlight each, I’ve done my best to separate-ish them and provide an explanation for, or example of, each below.
Balance and coordination
My balance and coordination are a joke.
I mean this in two ways.
(1) I’m better at unilateral exercises with one side of my body than the other.
This shows up in two ways. The first: I can balance better for things like pistols and single-leg RDLs on my right leg than on my left. The second: I have a lot of trouble doing single-arm dumbbell and kettlebell stuff on one side of my body. If I learn the movement using my left side, it is a STRUGGLE for me to figure out how to do it on the right (and vice versa).
This experience—of being better or stronger on one side of the body—isn’t unique to autistic people. It is more common in autistic folks, and the delta is often larger in autistic folks.
(2) I have a significant amount of trouble synching, stringing together, and coordinating multiple pieces or elements of a movement or exercise—let alone multiple reps of a single movement or exercise.
It takes me literal months to master a single element of a movement or exercise, and as we build on each element of any given movement or exercise, I often regress; it seems like my brain and/or my body simply forgets what to do. This is always frustrating, sometimes embarrassing and shame-inducing, and, specifically in the context of sport/working out, a version of autistic sensory overload that isn’t talked about enough.
A current, real-world example: After many months of weekly PT sessions, I’ve finally learned how to contract my pelvic floor (or, more accurately, how to register the sensation of a pelvic floor contraction) while standing up and breathing—but I still cannot hold a pelvic floor contraction while standing up and breathing, while also under load and/or moving.
Stand me in front of a squat rack and I can, with an unreal amount of very deliberate effort, contract my pelvic floor and keep breathing. Put an empty barbell on my back or in my hands, and I immediately stop breathing and can no longer perform or hold a pelvic floor contraction.
We’re 10 entire months into weekly pelvic floor PT, folks. We’re bound to get it one of these days—I hope.
Experience and expression of pain
Overall, I tend to have a high tolerance for pain, to not feel it—or to not feel it enough to be bothered by it—until it’s too late. I’m also more likely to describe a sensation as “uncomfortable” than “painful,” which is common among autistic people. And it doesn’t help that I’m an intensity-seeking masochist.
Taken together, this means I have a hard time registering a sensation as pain to begin with, and when it does register, I have a difficult time differentiating “harmless,” feel-good pain from pain that requires accommodation (rest, scaling, substituting) or medical attention. Even when I can differentiate, and even when I do communicate it, I have trouble getting people to listen to and believe me.
That last bit is a common autistic experience. Many of us are disbelieved when we try to communicate our discomfort or pain because our affect doesn’t match what people expect from a person who says they’re uncomfortable or in pain—we often don’t “look” or “sound” or “act” like it, so it’s assumed we can’t possibly be, or that if we were “really” in “that much” discomfort or pain, we wouldn’t be doing ABC, or we would be doing XYZ.
Dismissing our reports of discomfort and pain is highly problematic for a number of reasons. It’s gaslighting and invalidating, which harms our mental and emotional health and wellbeing. It’s also harmful to our physical health—it increases the risk that diagnosis and/or treatment for legitimate injuries or issues is delayed, which in turn increases the risk of a whole host of other potential problems, including permanent injury, and even death. This might sound dramatic. It’s not.
Autistic people are at greater risk of accidents and injuries (in general, not specifically sports- or exercise-related), and a “substantially heightened risk of death” resulting from said accidents and injuries. As a whole, autistic folks are three times more likely than the general population to die from injury. Autistic kids and young adults are forty times more likely than their peers to die from injury.
Every lifting-related injury I’ve had/currently have was initially dismissed by doctors and coaches, sometimes for years, because my presentation didn’t fit their script for an injured person, or a person in pain. I looked fit and healthy, therefore I was.
Like many autistic folks, I’m hypermobile: I have lax, unstable, and weak joints that make me more susceptible to connective tissue injuries, and joint discomfort and pain. As I write this, I’m managing a years-old injury in one hip, and rehabbing more recent injuries in my knees and in one of my shoulders.
All three of these joint injuries have significantly and negatively impacted my performance in the gym, and in daily life—I’ve not been able to complete a full, unmodified training session since last July, and I’ve only recently regained the ability to do “regular” day-to-day things, like take the stairs or reach above my head or across my body, without pain. Even with these improvements, I’m not back to pre-injury performance—I’m still not pain-free and I still don’t have full range of motion, which means my workouts are still heavily modified.
I also regularly cycle through periods of pain, instability, and weakness in my wrists, elbows, and ankles that significantly limit my training and day-to-day life.
My biggest challenge here is that I often literally cannot feel if I’m doing an exercise or movement correctly, or at all. “Where’m I supposed to feel this?” and “I don’t think I’m doing this right?” and “Can you touch me where I’m supposed to feel this?” are things I say all the time during training.
When I started pelvic floor PT last June, I didn’t know that I could do a pelvic floor contraction (a Kegel) because I couldn’t feel it. My DPT, who had a finger inside me, assured me I was doing a pelvic floor contraction. She could feel it. I, however, could not—and I spent that session, and many others, in tears of frustration and shame. How the fuck was I supposed to know I was doing my pelvic floor exercises correctly, or at all, if I couldn’t feel them? And what the hell was wrong with me? Why couldn’t I feel them?
Sometimes the issue is where I feel an exercise.
Late last year my then-coach had me doing an accessory exercise designed to work my shoulders and upper back. Reader, I didn’t feel the exercise in my shoulders or back. I felt it in one of my biceps and down into my forearm. Even after asking my then-coach to touch me where I was supposed to feel the exercise, I didn’t/couldn’t.
Sometimes it feels like my wires are crossed.
Tell me to contract my glutes and I’ll lock out my knees and flex my quads. Tell me to sit or stand up tall and I’ll tilt my pelvis forward, which knocks my spine out of neutral and causes my lower back to curve. Tell me to face forward and my torso will be turned one way while my legs are turned another—this, to me, feels “straight” and balanced and “right.”
My underdeveloped mind/muscle connection also means I have difficulty activating and using—and therefore strengthening—the correct muscle groups. As a result, my body has over the years developed quite impressive and dysfunctional compensatory movement patterns. These patterns are for sure partly responsible for my injuries and difficulties in progressing and PRing.
Motor planning and output
Sometimes, no matter how hard I try, I simply cannot get my body to do what it’s supposed to do/what I want it to do, even when the cue makes total sense to my brain. It simply doesn’t translate to the rest of my body.
“I don’t think my body is designed to move like that????” is something I used to say all the time during training before learning I’m autistic, and how being autistic affects athleticism. I always said this in a kind of sing-song, jokey voice and with a smile on my face, in an effort to keep myself from crying. I didn’t understand why I couldn’t do the most basic shit that came so naturally to everyone else, and I felt so fucking dumb (evergreen autistic sentiment).
When learning a new movement or exercise, it takes a tremendous amount of conscious attention and deliberate effort for me to plan and produce motor output. And you can see it on my face. When this happens, I am the “loading” meme, personified.
I know now that I learn best when new movements and exercises are fully regressed, broken down into the smallest constituent “part,” and I’m given time and space (without shit comments from coaches) to master each constituent “part” before moving on to the next.
Outside the gym
No matter the sport, two of the most important parts of training happen outside the gym: nutrition, and sleep. Autistic people are more likely to have atypical relationships with both. I do, and, sorry to brag, I always have.
Food, nutrition, and eating
Food is a multi-sensory experience. By definition, autistic folks experience and respond to sensory input differently than non-autistic folks. Food is no different. Research shows autistic people are disproportionately vulnerable to disordered eating.
I’m the type of autistic who is hypersensitive to the sensory properties of food. As a result, I have an atypical and challenging relationship with food.
My eating has been fucked since I was started on solid food at a year old. My two biggest issues: I’m generally disinterested in food and eating, and I’m extremely sensitive to the sensory properties of food—especially texture and taste. Because of this, I eat a very limited variety of food, and I have strict rules around food and eating.
As an athlete, this is a source of eternal frustration. I know that to progress, I need to eat more (I mostly mean “more” as in calories/macros, not variety)—and I want to! I want to eat more, because I want to be stronger and better at my sports. I also don’t want to eat more because I don’t enjoy the act of eating (or the acts of grocery shopping, or preparing or plating food), or the sensory properties of most foods. Often, the act of eating is an incredibly physically and mentally challenging task for me, and missing one meal can send me spiraling for days.
Missing one meal makes it easier to miss more meals, and missing meals fucks with my performance in the gym, which in turn fucks with my mental health. The longer I go with eating less, the more likely it is that I slack during or completely skimp on training, and the less I train, the less hungry my body is and the harder it is for me to eat. When this happens, it can take me a week or more to get back on track. It’s a frustrating, exhausting cycle.
Sleep is critical to every aspect of a person’s existence. It’s important for literally everything: mood, energy, physical health, mental and emotional wellness, cognitive processing, a regulated nervous system, the body’s ability to fight off infection, the body’s ability to recover from today’s training so it’s ready for tomorrow’s, injury prevention, etc.
By this point in the post, it should not shock you to learn that autistic people are more likely to experience sleep disorders.
I’ve struggled with sleep for much of my life—it takes me longer to fall asleep, I frequently wake in the middle of the night, and when I do, I have trouble getting back to sleep. Often, I average between three and four hours of sleep a night—and those hours are not always, or even usually, consecutive. Even when I’m go-go-go and tired as shit and want to sleep, I have trouble falling—and staying—asleep. (Yes, I’ve tried melatonin. And chamomile tea. And not drinking caffeine. And not using screens before bed. And establishing a bedtime routine. And visiting a sleep specialist. And and and. Different post for a different day.)
I know that my disordered sleep works against me, in- and outside of the gym, and that it affects my overall health and wellness in the longterm. I know that improving my sleep would improve my athletic performance, and my overall quality of life. I just don’t know how to get there.
* * *
On their own, each of the things I mentioned in this post is a frustrating experience that can have a huge impact on a person’s life, athlete or not. Taken together, and then layered on an autistic operating system and considered in the context of athletic training, that frustration and impact is amplified. And that amplified frustration and impact is amplified yet again when you factor in having to navigate training and treatment with coaches and clinicians who just. don’t. get it. Who in some (too many) cases, don’t want to get it. Truly, the number of fitness and medical professionals I’ve encountered who seem committed to misunderstanding autism and autistic people and experiences is unreal.
I don’t say any of this to make being autistic out to be a terrible fate. Being autistic is not, on its own, a terrible fate. What’s terrible is how under-, un- and misinformed people are about autism, especially people who should, and need, to know. Like coaches. And clinicians.
Coaches and clinicians don’t know how to work with and treat autistic athletes because they don’t have the slightest understanding of what autism is, or how being autistic intersects and interacts with health, wellness, and athleticism. Hell, coaches and clinicians don’t know how to work with and treat autistic people—athlete, or athletic aspirations, or not.
I say what I say in this post to bring attention to the ignorance and ableism that’s rampant in both the fitness and medical industries/communities, to inform and educate, to promote understanding and acceptance, and, ultimately, to help change the narrative and the conversation.
A note about the linked resources: Most of the resources I link to in the body of the post are, or reference, studies that were conducted with autistic children. Unfortunately, there’s not much research on autistic adults and their experiences, so these pediatric studies are often the best data we have to run with. ¯\_(ツ)_/¯