There is rapidly growing interest in the relationship between the hereditary connective tissue disorders, Ehlers-Danlos Syndrome (EDS)/hypermobility spectrum disorder (HSD), and autism. As some of my regular readers already know, I’ve been studying this relationship the last few years, both in terms of co-occurrence as well as overlap within the same families. Although there aren’t any current official estimates, I personally suspect that 10% or more of EDS/HSD individuals also meet criteria for autism and probably even more fall within the Broader Autism Phenotype (BAP) aka “subclinical” autism. We’ll see if future research bears out my suspicions.
This week Spectrum News published an article I wrote titled, “What Ehlers-Danlos Syndrome Can Teach Us about Autism,” exploring these very relationships. While it’s still very early days in terms of research, I’m hopeful that articles like this will interest the scientific community and draw them towards the study of these important issues. I know from personal discussions that the relationship between EDS/HSD and autism is a hot topic within both the zebra and autistic communities alike.
While I wish I could have gone into more depth in the article into topics such as mast cell activation syndrome (MCAS), orthostatic intolerance, and issues with Chiari malformations, tethered cord, and CSF leaks, all of which severely impact the general health of those on the EDS spectrum, the editors felt we needed to keep the introductory article simple for those readers who were completely unfamiliar with EDS/HSD, which I can understand. Hopefully, I may be allowed to bring light to these other serious issues in a future article.
In the meantime, I’m glad that this is another inch forward in highlighting the underappreciated relationship between EDS/HSD and autism!
Last I heard a genetic foundation for EDS hypermobility type hadn’t been found. I strongly suspect that’s because so-called EDS/HSD of that variety is actually hypermobility from collagen damage resulting from Lyme disease and co-infections/vector borne illnesses.
Lyme and friends can cause MCAS. Lyme and cohorts can drive POTS. Lyme and co. can cause cognitive dysfunction that manifests in “autistic” behaviors. Persistent infection, inflammation and damage to collagen can do incredibly destructive things to the human body. Lyme spirochete love the heart (POTS) and brain (autism).
It’s an error, both an ironic and an understandable error (given the tendency for researchers to sometimes myopically focus on an easily described symptom—in this case hypermobility), to keep looking under the EDS zebra umbrella for big ‘ol infectious Lyme, babesia, bartonella, erlichia, mycoplasma, chlamydia pneumonia etc. striped horses. Go to an EDS support group and then go to a Lyme support group. Ask yourself afterwards if you could make a differential diagnosis clinically since the symptom profiles of the two groups look identical.
You’ll see the main difference is the fact that the incredibly sick people getting treated for Lyme by Lyme literate practitioners are getting better, while the incredibly sick EDS group is flailing about helplessly, lamenting the lack of treatment options or begging for neurosurgery from a single doc in Maryland.
I agree that, in my opinion, the immune system is playing an important role in the etiology of these conditions.
I never had Lyme but I do have hEDS, so I would have to disagree about hEDS being a result of the Lyme’s disease. Also, my hypermobility is not acquired. I’ve been very hypermobile my entire life.
I’ve been hypermobile my whole life too–and I’m 44 years old. I’ve probably had Lyme most of my life as well, though I didn’t get lab confirmation of Lyme until I was 43. Lyme testing is tricky and previous (subpar) tests had reported I didn’t have Lyme. The more I learned the more it became clear Lyme was underlying most all of my challenges, definitely underlying my autism, MCAS, and my so called hEDS. The best news is that I’m recovering from all of these challenges since I now know the root cause of what drives them.
That’s great you’ve found the root of your issues. 🙂
What would you recommend a parent do if they have a child on the autism spectrum who also has Marfan’s features?
I read your article and would be very interested to see what your research will bring up. Time will tell, eh?
Thanks, yes, we’re excited to see what the data shows! It’s early days so we can see some definite trends appearing but still a little too early to be certain.