It would be very easy to draw a quick conclusion that the majority of autistic people are too lazy to exercise. We are often found playing video games or noodling around on our iPads. We were the ones who didn't have to look too far for an excuse to get out of PE during our youth, we were sick most of the time growing up and when we weren't, we weren't able to keep up with peers at recess. It's hard to develop motivation for physical activity when you're always the one picked last for the team. Thus began the cycle of avoidance.
But even when we decide later on that we want to become more physically active, autistic (and other neurodiverse) people face additional barriers that are not well understood. Our processing issues get in the way. I'm almost 48 years old and it has taken me years to be able to put this into words. I blamed myself for years for being weak-willed and inadequate. Understanding how my brain works has helped me develop strategies. I want to share what I have learned in hopes that it will help others in finding ways towards getting their personal exercise goals met. Exercise helps autistic brains and bodies to function better - it needs to be a part of our daily life.
So a quick primer on sensory issues. Here is a good overview on it. Why do we stumble and trip so much? It's because there are more than just 5 senses. From the article:
“Vestibular” refers to our sense of balance that is regulated by the inner ear. It creates the awareness of space, gravity and movement as well as our head and body position in relation to the earth.
“Proprioceptive” refers to our awareness of what our body parts are doing and where they are in relation to the world around us. Our muscles, joints and ligaments provide the body with this information.
In other words, that is what has been kicking my butt the whole time. Part of why I was so tired is I was struggling with these two systems that others get a free pass on. That's why I was always picked last. It wasn't that I didn't try hard enough.
Sensory issues don't stop there. Like many autistics, I am strongly affected by fluorescent lighting. It's a migraine trigger. I do better when the full spectrum lighting is used, but most places don't use those. It should be an simple ADA issue, they can build ramps and elevators, but they can't change a light bulb? Also, fragrances are another big trigger and many fitness people love to wear cologne/perfume. Being touched is challenging. To have a fitness coach or physical therapist touch me, then be expected to concentrate immediately afterwards is difficult. I can't shift as quickly (due to executive functioning).
The biggest hurdle, though, is Auditory Processing Disorder, which few people have heard of. Very often, physical therapy places or exercise classes or videos will have music playing in the background. I suppose that is great for most people, but because I can't filter out multiple sources of sound, I can't make out what is being said. I stop hearing full sentences and only get a word or two. In everyday conversation, I usually smile, nod and hide that I don't comprehend, but working with a PT or in a fitness class, my lack of comprehension becomes painfully obvious very quickly. Also, sometimes people talk too fast. I ask them to slow down, repeat key points, check with me to make sure I understand, but that doesn't always happen. It gets very frustrating, embarrassing and it kills my motivation quickly.
One thing that people need to remember about autism is that it is a communication disorder. If we are having a problem, we may not be able to verbalize it immediately. We rely on support people to help us interpret our nonverbal communication. Even those of us with strong advocacy skills sometimes need this support. Never assume that because an autistic person can verbally communicate, that they can always communicate at that level consistently. Avoid open-ended questions when an autistic individual is not doing well. "Do you wish to continue?" is an much easier question to process than "Are you OK?"
The last time I was in physical therapy, it ended with 911 being called. I passed out. The PT kept pushing me to do "just a few more", even though I said I was getting tired. He insisted that I count while doing exercises. Counting, plus focusing on how to do them correctly, plus keep track of my breathing...I couldn't juggle all that. I lost track of breathing. I once had a PT who understood autism and he was wonderful. It was a clinic that specialized in neurological injuries. I thrived. I wish I could find another place like that.
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If you are a physical therapist, personal trainer, PE teacher, sports coach, fitness instructor, etc, please take the time to learn more about these brain processing issues. There are a lot of clients out there who need your help, but they can't access your services. Please be proactive in addressing these barriers.
If you are autistic or have a family member who is, you already know a lot about this stuff. Like me, you may not have known that there is a name for all these things. Decide what accommodations you're willing to advocate for. One "trick" I have used successfully - I tell people I'm hard of hearing, it's faster than explaining autism. I got the instructor in the exercise class I'm in to stop using music and to talk a little slower. Hooray for small victories!
Update on 9/29/14 to add link to this study.