My Journey with Weak, Irregular Muscle Tone

There are a number of common issues experienced by autistic people that are not listed in the DSM-V-TR. These include things like digestive issues, trouble sleeping, and low, irregular muscle tone. While I have personal experience with all three of these, the last one has had the biggest impact on my life. When I was 25 and in my last semester of college, I began experiencing pain in my right leg, especially the hip area. If I sat for too long, the muscles from the ball of my right foot to my right gluteus would cramp up. I went to the doctor, who sent me to physical therapy. At this time in my life, my feet turned in and the bones on the outside of my feet stuck out strangely. I was incredibly weak and even bench pressing the bar in my weight class was a struggle for me. This was ignored during my examination. The PT saw me two times to do some stretches, my pain got better, and I was sent along my way. A year or two later, I went back to the doctor because the pain had returned. I was sent back to PT, seen up to a couple of months, given stretches and exercises, and then sent along my way. Rinse and repeat for the next 15 years. At age 40, I asked for pain management for this issue so that I could sleep at night. I was treated like I was drug seeking, but also sent for an MRI where they noted that I had a 3 cm labral tear in my hip joint. I received surgery a few months later and things seemed to improve after more PT, but just like before, this was only temporary. Bring on more doctors and more PT. After moving and getting new providers, I went through all of the above until I was able to talk my doctor into giving me a referral to another orthopedic specialist this past April. My hope going into this appointment was to either get some sort of solution, or to be told that I was just going to be in pain and there was nothing I could do, so at least I could go on with my life and stop trying to ‘get better.’

I met with the doctor, who looked at me with little expression, and told me that all of my issues where due to weak muscle tone and that I should find a personal trainer. I was incredulous, and asked about the surgery, the years of PT I had done to help build muscle, the cramping, the feeling that my leg was out of joint, etc. He stuck to this recommendation, but left me with no clear directions and no referral for who to go to who would understand my issues. When he left, I immediately burst into tears and when the nurse came back a few minutes later to clean up the room, she was surprised to find me there, and asked if I was okay. Of course I was not okay! All I could think was, “Why the hell did it take 21 YEARS OF PAIN AND SLEEPLESS NIGHTS for someone to tell me I needed a personal trainer?”

So, I went on a Facebook group for local women and asked for recommendations for someone who would understand how to help me build muscles the right way due to autism and hypothyroidism (another complication that added to my issues). I was given a recommendation, and so far, have had more pain free days than I have had in years. Still, I am constantly having to modify exercises, tell her that I am too weak to do what is being asked, and I still have to ask my teenage daughter to start the lawnmower for me because I’m not strong enough to start it myself. There has been a lot of frustration and tears, but I am getting stronger and still working on it. I hope that this will be a more permanent solution for me.

Dr. Cork, standing and lifting a weight in right hand in front of her body. The weight in her left hand is down near her waist.

You may be asking why I am sharing this? I have struggled with pain for more than two decades and while I probably did need physical therapy for maybe even the first decade due to the level of issues that I had, it took 4 doctors, more than a dozen physical therapists, one surgery, tens of thousands of dollars, and two orthopedic surgeons to get an answer of how to treat the low muscle tone associated with my autism. I am verbal, educated, and I do not feel that I struggle with alexithymia (difficulty communicating my physical or emotional experiences) in the way that many autistic people do. I am sharing my story in order to help another autistic person ask if low muscle tone might be causing their pain issues. I am sharing my story so that a family member may identify a possible reason for irritability in a nonspeaking autistic adult (I don’t know about others, but pain makes me irritable!). I am sharing so that another therapist or medical professional will be more aware of this common issue and actually check if this is going on for their autistic patient. 

Over the years, I have highly valued reading and watching content created by autistic adults. Because every person with autism is different, it helps me build insight into what my therapy clients might be experiencing, but aren’t able to fully explain. I hope that my story can do the same for others.