May is Ehlers-Danlos Syndrome (EDS) Awareness Month. We have a focused interest in the topic of EDS for several reasons.
1) There is a higher prevalence of Autism in the EDS population than there is in the general population. There is a demonstrated correlation between Hypermobile EDS (hEDS) and Autism.
2) JÂcqûelyn has a hyper-mobile EDS profile (hEDS).
3) Amy has been participating in an EDS ECHO for health care providers for the past 5 months- gathering information and learning.
4) As a part of this process, It became apparent to both of us that there is not enough information available to the autism community about what EDS is and why/when you might want to talk to your /your family member’s doctor about it.
5) hEDS often presents with Dysautonomia and Postural Orthostatic Tachycardia Syndrome (POTS). Both of these presentations cause some wicked Feelzzz in the body. These Feelzzz can result in a person resisting position changes, refusing tasks, and seeking of inputs (aka- “challenging behaviors” in some circles). If a person isn’t able to express / communicate their Feelzzz and link those to their behaviors – caregivers may unintentionally be creating medical distress.
6) So many factors influence dysregulation and “challenging behaviors.” This is such an important one for so many and is rarely considered. Refusal of a task due to dysautonomia requires VERY different support than refusal of a task due to the person not having enough information about the task.
7) hEDS and EDS are multi-system syndromes. Diagnosis can be elusive. But, management of symptoms is critical for health and quality of life.