If you’ve ever noticed your autistic child sits in the weirdest positions or they bruise when you so much as look at them, this article is for you!
There is a fascinating connection between autism and Ehlers-Danlos Syndrome (EDS). Although they are distinct conditions, there is significant overlap between them, and many families find themselves dealing with both conditions…in fact, you as the parent of an autistic child have a greater chance of having EDS yourself!
So, let's dive in and explore the connections between Autism and Ehlers-Danlos Syndrome.
Autism and Ehlers-Danlos Syndrome: A Unique Connection
Autism is a neurodevelopmental disorder known mostly for its profound impact on social interactions, communication, and behavior.
Ehlers-Danlos Syndrome, or EDS, is a group of genetic connective tissue disorders that affect the body's collagen, resulting in joint hypermobility, fragile skin, and a whole host of other complications. There are 13 distinct types, and genetic testing is available for all but one subtype.
The most comprehensive source for information on Ehlers-Danlos Syndrome is The Ehlers-Danlos Society. Follow this link to learn more about the different types of EDS, and information on the test physicians use to determine hypermobility (The Beighton Scale) can be found here.
It's important to note that not every individual with autism will have EDS, nor will every person with EDS have autism. However, research has revealed a fascinating overlap between the two, with a higher prevalence of EDS among individuals on the autism spectrum than in the general population.
Also of note, a very common pattern I have seen (and experienced myself) is a mother being diagnosed with EDS, then having autistic children who may or may not inherit Ehlers-Danlos from her.
Ehlers-Danlos Syndrome Symptoms
The following is a brief, in no way exhaustive list, of some of the symptoms people with Ehlers-Danlos Syndrome could potentially have:
- Extreme hypermobility
- Hypotonia/Low muscle tone
- Muscle weakness
- Low energy
- Anxiety
- Digestive issues
- Hernias
- Pelvic prolapse
- Cardiac issues, including mitral valve prolapse
- Small, narrow palate and teeth crowding
- Unexplained muscle and joint pains
- Skin conditions, including rashes
- Easy bruising
- Food intolerances and allergies
- Environmental intolerances and allergies
- Frequent joint dislocations or subluxations
- Seeming clumsy
- Unusual gait pattern
- Sleep apnea, especially if it starts in childhood
- Soft or velvety skin
- Irregular scarring
- Irregular stretch mark patterns
- Being “double-jointed”
If you’re reading this and saying, “Yup, sounds like me and my kid,” you’re not alone! When I realized I had EDS, it was like a lightbulb went off. Suddenly all my weird health issues through the years made sense!
Having a framework to understand what was going on for myself and my kids was helpful in figuring out what to do to help us all….this is why information and diagnosis matter, not just for autism, but for all related health conditions.
Hypermobility Spectrum Disorder
Sometimes, a person is pretty flexible and has some signs of EDS, but not enough for a geneticist or rheumatologist to diagnose Ehlers-Danlos Syndrome.
In that case, they are usually diagnosed with Hypermobility Spectrum Disorder, or the less kind sounding Benign Joint Hypermobility Syndrome (it’s anything but “benign,” thankyouverymuch!).
While some people feel that this is a “lesser” diagnosis than Ehlers-Danlos Syndrome, once it is documented in a medical record, you can always ask your provider to re-evaluate at a later date if you or your child’s condition changes.
Shared Genetic Factors
One of the key factors contributing to this overlap is genetics. Both autism and EDS have a genetic basis, and recent studies have identified potentially shared genes and genetic mutations between the two conditions. These genetic links are providing scientists with valuable insights into the intricate web of connections that shape our neurodevelopment and physical well-being.
Sensory Sensitivities and Sensory Processing Differences
Another intriguing similarity between autism and EDS lies in sensory sensitivities and sensory processing differences. Individuals with autism often experience heightened or diminished sensory responses, while those with EDS commonly report increased pain sensitivity and tactile defensiveness. These shared experiences might be rooted in the neurological and physiological roots of the conditions.
Overlap in Co-Occurring Conditions
Autism and EDS can also share co-occurring conditions. Both conditions have been associated with various comorbidities, such as gastrointestinal issues, sleep disturbances, and anxiety disorders. Understanding these shared comorbidities is crucial for healthcare providers and caregivers in providing comprehensive support and tailored interventions for individuals affected by these conditions.
Navigating the Overlap
When autism and EDS coexist, it's essential to adopt a holistic approach to care…especially when talking about care for children.
Often, kids who are both autistic and have EDS will require more medical procedures and testing. and will deal with more physical health challenges than their neurotypical peers. And the medical interventions they need can be challenging for them due to the sensory sensitivities caused by their autism!
It’s important to work with your medical team to get the appropriate care, possibly including anti-anxiety medications, so they are able to safely endure the procedures they require, and not develop medical PTSD.
Collaborating with a multidisciplinary team in your day-to-day life is important, too. This includes medical professionals, therapists, and educators who can help address the unique challenges faced by children with both autism and EDS. By combining strategies from various fields, such as sensory integration therapy and joint-strengthening exercises, you can provide a well-rounded support system for your child.
Is there any treatment for Ehlers-Danlos Syndrome?
At this point, there isn’t any effective treatment to manage the disease itself. Most care currently focuses on symptom relief, preventative strengthening, and surgical management of injuries.
There are two resources I can personally vouch for.
One is a physical therapist who specializes in caring for patients with Ehlers-Danlos Syndrome. His name is Kevin Muldowney and you can find his website here.
The other is a Facebook group called Ehlers-Danlos Syndrome and the Cusack Protocol. There you can find information about a supplement regimen developed by a woman named Deborah Cusack. I know it seems a bit sketchy, but the Facebook group is the only place she shares the information.
There is no cost to join the group, and all of the information is free! In a nutshell, Deborah, through significant medical research, has developed a list of supplements that help an EDS body to build collagen the proper way, so the list of symptoms you experience goes down dramatically. This isn’t medical advice, and you should most definitely speak with your child’s pediatrician or your own primary care provider before starting any supplement.
I personally have been on the protocol for almost five years, and the change for me is significant. I went from being bedridden several days a month (and struggling on all the other days), to opening two businesses, totally transforming my life, and radically changing the way our family lives for the better!
Not saying it’ll do the same for you, but if you suspect you or your child have EDS, The Cusack Protocol Facebook group is a great place to start looking for ideas that will actually help.
Conclusion
Science may not have officially caught up on the link between autism and EDS, but I can tell you it’s there (even if the rheumatologist who diagnosed one of my kids argued with me that it wasn’t connected).
This co-morbid condition is so challenging because we parents are often dealing with the same thing! Having EDS takes a lot out of your body, and can make being the parent your child needs you to be challenging.
That’s why self-care is so important if you’re living with EDS or HSD as a parent!
Below are some of my favorite self-care resources:
Remember, every person's journey is unique, and a personalized approach is key whether you’re dealing with autism or EDS. I hope you find what works best for you and your family.
Disclaimer: This article provides general information and support. It's essential to consult with qualified healthcare professionals for personalized advice and guidance. This article is not medical advice, and should not be treated as such.
This article is part of our series on Autism and Co-Occurring Conditions…check back on August 2, 2023, to view the complete collection.
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