Autism and Ehlers-Danlos Syndrome

Article, Parent / Family Member, Wellness / Health, Daily Living, Parenting Teens / Adults

Publish Date: January 8, 2026

Former AANE Staff Member

Note: The information shared here about chronic health conditions is based on personal experience and should not be considered medical advice or a substitute for professional medical diagnosis or treatment. Always seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition.

From a young age, my Autistic daughter struggled with a variety of health issues that have been very difficult for her and baffling to us as parents. While there were certainly medically proven and documented issues, we found it difficult to understand the severity and root cause or causes for her long list of symptoms. Over the years she has struggled with:

Multiple allergies
IBS
Frequent nausea
Scoliosis
Endometriosis
Complex Regional Pain Syndrome
Clumsiness leading to frequent sprains
Significant insomnia
Dizziness
Fainting
Memory issues
Anxiety/Depression
Migraines
Easy Bruising
Unexplained Stretch Marks
TMJ Pain
Velvety skin that scarred abnormally if cut
“Double Joints”

I listed her health complaints and asked multiple primary care doctors if they could be related in any way. I was told no, she was just “unlucky,” ”suffering from depression,” or they implied she presented as someone with a somatoform disorder and she needed psychiatric help. Before we found the overarching diagnosis, she had an allergist, a gastroenterologist, a gynecologist, a pain specialist, a sleep disorder specialist, a cardiologist, an ophthalmologist, a dermatologist, a psychiatrist, a neurologist, and a therapist.

When she was in her 20’s, a dermatologist noticed that a small growth she had removed hadn’t healed properly, and when it did, the scar had a distinctive “cigarette paper” appearance. She questioned whether Ehler-Danlos Syndrome had ever been proposed. We had never heard of it, but a little research showed that she met most of the criteria for the diagnosis of one of the 13 EDS types: Ehler-Danlos Type 3 – Hypermobility (hEDS). hEDS is a genetic condition and can appear in different forms throughout a family tree. It turns out that my daughter has hEDS as well as the co-occurring conditions of Postural Tachycardia Syndrome (PoTS) and Mast Cell Activation Syndrome (MCAS). At the time of these diagnoses, no mention was made of a possible link to her autism.

Since her diagnosis, different staff members at AANE have shared with me that they had clients who either had an EDS diagnosis or Hypermobility Spectrum Disorder (HSD). This has been borne out by my own data gathered informally from the young women’s groups that I have facilitated for several years now. Out of a group of twelve, 3 to 4 of the participants have either had an hEDS diagnosis or symptoms strongly suggestive of one.

It’s been six years now since my daughter’s diagnosis and a growing body of research, including large population-based studies, show that a substantial portion of the Autistic population exhibits generalized joint hypermobility (a cardinal feature of hEDS/HSD). Conversely, samples of individuals diagnosed with hEDS/HSD often show a significantly elevated rate of meeting diagnostic criteria for Autism, sometimes as high as 39%. This seems to be particularly true for young women. Because hEDS and HSD are connective tissue disorders, research is beginning to suggest that defects in connective tissue – the structural “glue” of the body – may play a role in neurodevelopment and function.

Systems affected by hEDS/HSD often overlap with those seen in autism. They include the autonomic nervous system (dysautonomia), gastrointestinal issues, pain and sensory processing, motor and proprioception, and psychiatric co-occurring conditions including anxiety and depression.

The links below have more information about signs and symptoms. Knowing that she isn’t imagining what she has been experiencing has been a tremendous relief to my daughter and has allowed us to move forward with finding the right treatments for her. If you or your family member suspect that you might have EDS, contact a good rheumatologist or genetics counselor. It is a little known condition and many primary care doctors are unaware of it. The following links lead to websites that provide more information about EDS and related disorders.