From a young age, my Asperger’s daughter has 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, were all of her complaints real? Were the sensory issues or known comorbidities associated with autism the culprits? Was she trying to get out of doing things that she didn’t want to do or that were hard for her? Was she a hypochondriac? Were mental health issues causing her to somaticize? Over the years she has struggled with:
- Significant allergies
- Frequent nausea
- Complex Regional Pain Syndrome
- Clumsiness leading to frequent sprains
- Significant insomnia
- Memory issues
- 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 these could be related in any way and 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. So she had an allergist, a gastroenterologist, a gynecologist, a pain specialist, a sleep disorder specialist, a cardiologist, an opthamologist, a dermatologist, a psychiatrist, a neurologist, a therapist, and she made very frequent visits to her primary care doctor or was a “frequent flyer” to her school nurse and later, the college health center.
In May, her dermatologist noticed that a small growth she had removed hadn’t healed properly and when it did, the scar had a distinctive 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: EDS Type 3 – Hypermobility. EDS is a genetic condition and can appear in different forms throughout a family tree. It turns out that my daughter has EDS as well as the co-morbid conditions of Postural Tachycardia Syndrome (PoTS) and Mast Cell Activation Syndrome (MCAS). I was also shocked to see that autism was listed as a possible co-morbidity.
Since her diagnosis different staff members at AANE have shared with me that they had clients who also had an EDS diagnosis; the count is currently at five. The one EDS support group we have managed to attend had a question and answer period where one woman stood up and asked if anyone there was on the autism spectrum. Of the 30 people there, four raised their hands. I think this is significant and bears closer inspection.
The links below have more information about signs and symptoms. Knowing that she isn’t crazy 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.