Growing up, I learned quickly I couldn’t trust my body. I’d be standing up one moment and on the ground the next. My torso would turn one way and my legs another. A knee would give out from under me. What would follow would be pain and nausea, and I’d be found by someone holding my knee while I grunted and tried not to throw up. I’d try to get up as quickly as possible, often limping. This happened at least four times total, including in adulthood, as far as I can remember, but I’m sure it happened more than twice in childhood. I was often left with a feeling that I could not trust my legs to carry me places and that my body might betray me at any moment. I thought what was happening was normal. A family member was often taken to see a pediatric orthopedic specialist. I assumed that if anything were out of the ordinary, I would have been taken to be evaluated, too. When another episode occurred in my mid-twenties, I knew something was wrong. I went to my orthopedist for an evaluation.
What I came to learn was that I was having partial patellar knee dislocations. I also experienced terrible growing pains in my ankles. I can remember wanting to enjoy Christmas lights and feeling strong dull aches in both my ankles. My dad would massage my ankles to try and dull the pain. I just wanted the pain to go away. A kind doctor ordered X-rays and came in with a diagnosis. I had patella alta. He recommended physical therapy. My insurance was bad at the time, so I started exercising more and strengthening the muscles around my knees. I haven’t experienced another episode since then.
Five years later, new insurance card in hand, I had a new set of problems. I no longer had my knee giving out on me, but instead I had permanent lower back pain and knee pain. I completed a 5k but was in excruciating pain for almost a week after. This time, knowing I needed pelvic floor therapy, I resigned myself to biweekly appointments with a local pelvic floor therapist and made another appointment with the orthopedic practice. I had been doing a DIY project to fix my gait issues and was still having tibial internal rotation that was harder to fix than I wanted to admit. I was also having trouble correcting my anterior pelvic tilt. I had also started researching hypermobility and autism. I got another set of X-rays, and this time, on top of confirmation of the patella alta, I got the rest of the dots connected. I have hypermobile Ehlers-Danlos syndrome. I’ve started connecting the dots in my medical history that never made sense but are now starting to make a lot of sense.
When I was in high school, I had two grand mal seizures. The first happened when I was at an AP info night and resulted in a trip to the hospital. I had testing done and was referred to a pediatric neurologist. He would refer to having a seizure as “excitement” and would start each office visit with “Have we had excitement anymore?” Unfortunately, the next year there was more excitement. After my second seizure, I was on medication for several years. I would see him periodically for follow-up care, and he was the specialist who listened to me when I needed a referral for my autism evaluation. His sense of humor and listening when I was at my most vulnerable and needed a professional who trusted that something was different restored my belief in doctors. Eventually I tapered off the medication, and I’ve never had another one. Apparently, epilepsy in adolescence isn’t uncommon for those with Heds.
The rest of the symptoms are associated with the onset of my cycle, and I’d like to provide a more comprehensive guide for those with autism and Heds in the future, so I’ll leave those symptoms for another time. I have a lot of allergies, including to real Christmas trees, which is one of the saddest ones. When I started having a terrible reaction to a real Christmas tree one year, my brother tried to convince my parents it wasn’t really the tree and that I could take allergy pills if it were. I’ve gotten hives from evergreen tree sap, experienced anaphylaxis from medication, and developed allergies to new allergens just to new ones. I always felt confused about why I started developing severe allergies in adulthood, and it’s nice to have an answer. Other memories are starting to fall into place like pieces of a jigsaw puzzle.
In college, I split my knee open when I fell on a rock while walking back to my dorm. As they tried to numb the wound, they kept having to put more numbing in the wound, and the nurse practitioner who had the unfortunate task of numbing and stitching me up kept looking at me with concern. Eventually, she said, “We can keep adding numbing, or we can just stitch you up.” The amount of local anesthetic must have been above average for her to say that. The scar from that procedure is a bit concave and long. I’ve never understood why sometimes I need over nine hours of sleep to feel rested, see spots when I close my eyes, or get dizzy when I stand up. Sometimes I need another two or three hours to feel like I can function.
One of the first things I did once I had the confirmation of the diagnosis was call my siblings so that they could pursue evaluation if they wanted to. I now have a knee brace that has alleviated a lot of my pain, and I’m planning on starting physical therapy for my knee once I’m discharged from my pelvic floor therapy. I’m hoping that as I learn more about my new diagnosis, I can educate others and raise awareness regarding how autism and hypermobility disorders often coexist. If anyone has any good resources, I’d enjoy to hear about them!
Living on the Spectrum 
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