Road to dual hEDS-autism diagnoses can be long but empowering

People with hypermobile Ehlers-Danlos syndrome (hEDS) who also have autism commonly experience complicated journeys to diagnosis of both conditions — but once both conditions are accurately diagnosed, patients often report feeling empowered and better able to manage their own care.

“Diagnostic journeys were lengthy, gruelling and expensive, particularly for hEDS, yet diagnosis increased self-compassion and facilitated self-management and self-advocacy attempts,” researchers in the U.K. wrote in a study highlighting the way the two conditions can intersect.

The study was based on interviews with five women diagnosed with both hEDS and autism.

“While in some ways autism helped hEDS management, in others hEDS symptoms compounded difficulties associated with being autistic and vice versa,” the researchers said.

The study, “Autism and hypermobile Ehlers-Danlos syndrome (hEDS): A challenging combination,” was published in Research in Autism.

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Common interconnection

hEDS symptoms include unusually mobile joints and fragile skin. Autism is a neurodevelopmental condition that’s marked by atypical communication, sensory issues, and unusually intense interests.

hEDS is more common in autistic people than in non-autistic people. Studies on the co-occurrence of these two conditions have mostly focused on trying to understand the underlying biology that connects hEDS and autism, while there’s been minimal research into how having both hEDS and autism affects the lived experience of people with these conditions.

The researchers highlighted two major themes from their interviews with patients. First, they found that the road to diagnosis was often lengthy and challenging. Several patients recounted trying to seek medical help for chronic pain and other physical ailments related to hEDS, only to be dismissed by healthcare providers who assumed that these physical problems were due to anxiety or other mental health issues.

“Continual dismissals often meant participants needed to engage in extensive and exhausting self-advocacy to refocus investigations on their physical symptoms,” the researchers wrote. Dismissals led to extreme stress about seeking out further medical care; some patients reported years where they didn’t see a doctor at all, despite persistent symptoms. The researchers said communication abnormalities related to autism likely exacerbated these issues.

“I have huge anxiety speaking to doctors,” one woman said. “I get nervous, I get upset because I’ve had so many bad experiences from such a young age… [most] doctors I’ve seen have been not only cold, and withdrawing, but dismissive, uninterested and, clearly … uncaring.”

Although getting an accurate diagnosis was often an ordeal, the women reported feeling empowered once they got one. Learning about both hEDS and autism helped patients feel that they understood themselves better and could be more compassionate towards their own, unique needs. At the same time, accurate diagnoses helped facilitate better self-management, prompting patients to use tools such as pacing out activities to reduce hEDS-related pain and fatigue or avoiding environments that trigger autism-related sensory complaints.

The second key theme to emerge from the interviews was that, for people with hEDS and autism, the two conditions don’t exist separately but rather interact. Sometimes these interactions can be beneficial. For example, many patients said they felt the way their autistic brains processed information was an advantage when they were learning about hEDS.

“I think it was beneficial being autistic because… I could immerse myself in it [managing my health] and really remember things that other people couldn’t quite get a grasp on,” one woman said. “So, it made it easier to know what adjustments I might need.”

However, some challenges that come with being autistic can make it harder to manage hEDS. Many people with autism have executive dysfunction (difficulty focusing and regulating behavior), which can make it hard to put management plans in place. New and non-private healthcare environments represented extra obstacles that sometimes led to medical non-adherence.

“The co-occurrence of hEDS and autism has the potential to facilitate management of hEDS, through recognising and actively supporting autism-related strengths,” the researchers wrote. “At the same time, autistic people with hEDS experience negative psychological consequences.”

The researchers called on doctors to be proactive about understanding the unique needs of people dealing with co-occurring hEDS and autism. To facilitate this, they said, more studies are needed to better understand patients’ experiences with the two conditions.

“To support individuals with both diagnoses, clinicians should develop a better understanding of their physical and psychological needs, through enhanced education, and further consider the appropriateness of medical environments,” they wrote.