Seven years ago I was sent for an examination. It was the second specialist to see me and I came away from that examination with a diagnosis of arthritis, throughout my entire body. My left knee was swollen and constantly gave me problems, my lower back was always in pain and my shoulders were constantly burning and uncomfortable to the point that prevented me from enjoying something as simple as sitting down to a meal. I couldn’t turn my neck to its furthest point of rotation when I looked right.
Since that second appointment I have learned that I am on the autism spectrum. I learned a lot about autism in the last seven years since my diagnosis. I learned that in four of my senses I am largely hyposensitive and thusly I have difficulty making sense of the things I feel in my body. My threshold for pain is inconsistent with neural typical experience and that has made medical treatment a complicated and sometimes challenging endeavour.
To make a long story short two specialists diagnosed me with arthritis, sighting arthritis as the cause of the pain in my left knee, low back, shoulders and neck. They and the army of technicians that performed ultrasounds, two M.R.I. and three x-rays were horribly wrong. It turned out that my left knee had sustained injury in one of many fights I was in at work. I had a completely detached A.C.L. paired with two torn meniscus in my left knee, not arthritis. I had surgery and my knee is now functioning at one hundred percent. My lower back pain revealed itself to be Iliopsoas inflammation from strain, not arthritis. I corrected it over two years of focus and learning with rehab and stretches. I now have zero back pain and full function. My shoulders and neck were related it turns out. Just this past week I was finally diagnosed with an odd injury. It turns out I tore the thoracic nerve cluster in my neck in one of many fights and it never had time to heal. I lost use of my shoulders and felt burning pain as a result. I have begun rehab and between use of the Iron neck (a neck strengthening device popular among martial artists like myself) and animal flow movement patterns I have fully restored my neck to one hundred percent and my shoulder is expected to make full recovery, I have no pain in my body for the first time in eight years.
This got me thinking about one of the challenges of life on the spectrum that is seldom discussed. The difficulty of obtaining quality accurate medical care is a challenge for many people but for neural a-typical folks that complication is greatly increased. Doctors have often asked me typical questions when I have been injured in the field or in sports competitions. Questions like “rate the pain on a scale of one to ten” or “can you squat down to the floor?” I always inform the examining doctor that I have hyposensitivity from autism and the doctors often say they understand but given the kind of situations I have been in regarding medicine, like those I describe above, it is clear that most doctors don’t fully grasp the issue in a real way.In fact both of the accurate diagnoses I was eventually given, those that led to my surgical repair and successful treatment, were actually given to me by sports therapists and not by doctors at all.
If you are told you have arthritis and just accept it because you can’t make sense of your own bodily sensations, you might get some support. If you argue that the diagnosis doesn’t make sense many doctors tend to take offence and often become condescending, reminding you that they have a medical degree and not you. How is someone like myself supposed to even negotiate a polite disagreement and insist on other opinions? I most likely wouldn’t even know if I was being rude (who could tell with the ever changing definitions of polite neural typical society am I right?). I don’t have anything against the neural typical medical institution, I am thankful for the help I have been given even if it is sometimes a crab shoot. It’s just another that area I struggle to communicate. Trying to break through that invisible wall is arduous and it’s no ones fault. We all have to work together to communicate.
So what can I do? In a word… Train.
I am cleared to push as hard as I want. I love to dig in and I love a challenge. It is a form of stimming for me on some level I am sure. I couldn’t be more thankful that I have now been cleared of what was once asserted to be arthritis. I am not angry or jaded that I was misinformed. I am happy I was misinformed because now I get to fix it. Others are not so lucky.
So I thought I’d give a shout out to others on the spectrum and pass along some words of encouragement. Our gifts sometimes complicate things and the world isn’t perfect but with enough grit and determination we can figure it out in the end, even if we have to do it on our own. I am not advocating for self treatment, a doctor is still essential and one should still follow a doctors advice, I’m just saying that while it may be hard those of us on the spectrum shouldn’t shy away from a second opinion.
I am really trying to say that I am there for you. I now how frustrating it can be but keep your eyes on the prize and get back to being you. My preferred stimming is B.J.J. and boxing, I love throwing kettle bells and getting dirty as well. Whatever your preferred stimming is, one day I promise, you will get back to it too. Always focus on the positive on the horizon and don’t let others take away your joy.
Some day autism will be better understood in the medical community and conversations with the people in our lives will look different. Until then don’t let others decide your identity, what you’re feeling, or what may be ailing you. More than just your health depends on trusting yourself.