Please note, this is my personal experience of living with Ehlers Danlos Syndrome, the treatments and path to diagnosis and should therefore not be taken as medical advice. I am aware that some complaints are only indirect EDS symptoms but these also contribute to the overall picture and my experience with the condition, EDS.
Quotes and links are freely available information from the internet and not verified. These, and my experiences, are not intended as an alternative to medical advice.
I know autism is not a symptom of Ehlers Danlos Syndrome but I see a lot of people with autism that struggle with physical issues and I think it’s worth looking at myself.
There might be a lot of triggers for anyone with autism to develop physical issues. Movements and neurological perceptions are often different and muscles and joints get overstimulated, leading to several issues, and sometimes severe disability.
The other way around I think it is possible too. If a body needs constant attention and awareness, when it extracts energy and feels different, a person can grow up introverted and slightly autistic. When you can not communicate with body language because in a deeper level of consciousness you hold and tighten your muscles, you are often misunderstood. A child that grows up and is not understood by grown ups might not feel worth talking and explaining because it doesn’t make any difference.
Instead a child turns inward. Feels only understood by the inner self and creates a parallel world in which it can be as anyone else. Where the body is the image of the soul and can express its feelings, longings, dreams and visions. Instead the body is a burden that has to be carried and dragged through life.
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I am a man born in the 70’s. Autism wasn’t so much on the radar as it is today. I was tested for it when I was 10 or 11. One day a nurse came to school and our teachers summoned 3 children to have a conversation with her and do some tests. No one told us what it was for, not even our parents knew, but it was the 3 kids who were different, silent, outsiders, but not the slow learners. I had a good conversation with her, she knew how to get to my deep thinking.
She knew things about me, that I was a dreamer, that things I was interested in I dug into to a very detailed level. She asked me if I was still a bedwetter and I lied that I wasn’t. Cognitive tests were done that I found silly and not on my level. There were no consequences to the outcome but I suspect this was more to help the teachers deal with and understand kids that are different, maybe autistic.
The three of us weren’t friends and didn’t socialize, but we knew we were alike in some way. It was an area that teachers apparently worried about and required an expert evaluation.
I’ve been bullied many times in my life, and this separation from students resulted in many unpleasant remarks. However, negative reactions to my character never hit me as hard as hateful comments about my appearance, so this commotion had little impact on me. The three of us received more attention for the first few weeks, but soon everything was back to normal.
My difficult home situation did no good in interacting with peers and classmates so when they moved on I stood still in my age development. In middle school I couldn’t keep up with others at all. I hung on to my childish ways and the distance between me and others increased and so did my loneliness. I stumbled through puberty, not understanding my body, my feelings, and not understanding my position in this world.
I don’t consider myself autistic but rather deeply introverted. I was bullied a lot as a child. It hurt me very much and made me even more of a loner. I had and still have difficulties building relations and connecting with others. I have been deeply silent to a level that annoyed others, although I learned and adapted my personality to what society and people around me expected. But the gap between my inner self and the man I present to others increased.
It makes it hard, dealing with my medical issues. I don’t open up to medical professionals easily. I struggle finding words to express myself. I overthink things endlessly, which is often mistaken as being slow. Face to face I am easily overwhelmed by a doctor and often doubt myself which in hindsight is unnecessary. EDS being as complex as it is doesn’t help and I guess that’s part of the problem why many neurodiverse patients struggle to get the medical care they need. It is frustrating, fuels depression and quickly one is in a downward spiral, not able to see a solution or a way to live a life worth living.
Living with Ehlers Danlos Syndrome 