If You Can’t Connect the Issues Think Connective Tissues: Autism and Ehlers-Danlos Syndrome

When I was young I struggled, both socially and physically, to keep up with my peers. But public awareness of medical and neurobiological conditions wasn’t as advanced back then and access to specialists was limited in many regions. My symptoms weren’t severe so doctors didn’t take them seriously. I was just a clumsy, awkward kid, right?

As an adult I experienced the same thing. Seemingly unrelated chronic health issues with no known cause. Then I became a parent and the cycle started again. My kids had physical complaints that were easily brushed off, and they were deemed developmentally normal based on linguistic ability while their emotional dysregulation was ignored. Eventually, they were diagnosed with clusters of random conditions—Sensory Processing Disorder, chronic migraines, Generalized Anxiety, joint hypermobility, fine and gross motor delays, syncope, etc. All these labels did, though, was describe the symptoms rather than point to a cause. After years of research and pushing for better answers, we found the connection!

Three of my four biological children were identified as autistic in their teen years. It’s common for multiple siblings in a family to be autistic since there is a strong genetic component. However, I was surprised to learn that there was a possible link to their medical issues as well. A growing body of research, including this article from the University of South Carolina, is finding a correlation between autism and connective tissue disorders such as Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder. Mothers with EDS are just as likely to have autistic children as mothers who are autistic themselves. The link has largely been unrecognized until now because both conditions are underdiagnosed and identified/treated by different medical professionals.

So what are some of the indicators that a connective tissue disorder might be present? Well, connective tissue is in every system of our body so the effects of weak collagen can be widespread. In addition to highly flexible joints, many people experience:

  • Clumsiness and poor motor skills
  • Migraines caused by vascular and hormonal issues or laxity in the spinal column
  • Jaw problems like TMJ disorders
  • Varicose veins, even at a young age
  • Digestive disorders including GERD, delayed stomach emptying, gastroparesis, and constipation
  • Delayed speech or pronunciation disorders due to affected motor planning and articulation
  • Easy bruising, poor wound healing, or excessive scarring
  • Trouble with dizziness, fainting spells, heart rate, or sudden blood pressure changes
  • Vision issues
  • Easily fatigued
  • Odd ways of sitting or walking, poor posture
  • Immune disorders

Sometimes doctors are unaware of EDS at all or its link to autism, and only 50% of cases can be identified by the genetic testing available now. If you suspect you or your family members have a connective tissue disorder, try searching for local EDS support groups via social media to find knowledgeable doctors and specialists. Assembling the right team of medical professionals is critical to living the healthiest life possible.

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