Category Archives: Health

We Need Research on Ehlers-Danlos Syndrome

Note: This post contains medical language and discussion of early death. Are many young adults with autism dying preventable deaths because they and their families are unaware of Ehlers-Danlos syndrome? When I was a member of the Interagency Autism Coordinating Committee (IACC), I commented when representatives from Autistica UK presented on early death for adults with autism. They didn’t mention Ehlers-Danlos syndrome. I talked about Ehlers-Danlos, my son, and the fear that no one is researching or talking about this. I hadn’t heard anyone previously, and I haven’t seen anything on the topic since. That’s a problem. It’s especially a problem for me and my son. My son was a serious baby.  He was a bit floppy, delayed in crawling, sitting, and walking.  He learned to do all three before he was 14 months old. What he did not do was speak. After several rounds of diagnostic testing, he was diagnosed … Continue Reading ››