New study finds autism tied to worse health outcomes in hEDS, HSD
Survey highlights differences in symptoms, mental health, and care needs
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People with hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorder (HSD) may experience greater physical and mental health challenges when they also have autism, a survey study in the U.K. suggests.
Drawing on responses from more than 1,700 participants, researchers found that autistic participants more often reported pain, sleep problems, anxiety, depression, skin issues, and problems affecting the bones, joints, and muscles.
According to the researchers, the findings suggest “it is important to examine and explore the autistic experience of hypermobility, care, and outcomes, and which interventions and supports may be most beneficial.”
The study, titled “Health experiences and outcomes of autistic and non-autistic adults with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder,” was published in BMC Medicine.
hEDS and HSD are hypermobility conditions affecting connective tissue
hEDS is the most common type of Ehlers-Danlos syndrome (EDS), a group of connective tissue conditions that affect the body’s support structures, including joints, skin, and other tissues. These conditions can cause symptoms such as joints that move beyond the normal range of motion and frequent joint dislocations. HSD is a related diagnosis that also involves joint hypermobility and may be used when a person does not meet the criteria for hEDS.
Previous research has suggested links between autism — a neurodevelopmental condition characterized by differences in social communication, interaction, and behavior — and hypermobility conditions such as hEDS or HSD. Some studies have also reported that mothers with hEDS or HSD may have similar rates of autistic children as mothers who are autistic themselves. However, “research has not yet explored whether autistic people experience hypermobility in a similar way to non-autistic people,” the researchers wrote.
In this study, researchers at the University of Edinburgh used an online questionnaire to assess the diagnostic experience, hypermobile symptoms, physical and mental health, and coexisting conditions in 1,754 individuals with either hEDS or HSD. Among them, 436 had a diagnosis of autism, 887 did not have autism, and 431 were not diagnosed with autism but reported high levels of autistic traits.
Most participants were female (90%), and the largest age group overall was 25 to 44 years (56%). The youngest group, ages 16 to 24, made up a larger share of the autism group than the non-autism group (32.1% vs. 11.5%).
Most participants were diagnosed with hEDS
Overall, 87.2% of the participants were diagnosed with hEDS, while the remainder had HSD. The proportions of these conditions were similar across the three groups. However, participants without autism reported longer delays before receiving a diagnosis of their hypermobility condition than those with autism (19.4 vs. 17.6 years). In most cases (74.6%), the diagnosis was made by a rheumatologist.
When asked about symptoms related to hEDS or HSD, autistic participants more often reported skin problems, issues affecting the bones, joints, and muscles, and pain compared with those without autism. The autism-traits group did not differ significantly from the other groups.
Autistic participants also more frequently reported other health conditions, including heart, neurological, and immune system problems, as well as sleep disturbances. They were also more likely to report dyspraxia (developmental coordination disorder), dyslexia (a learning disability affecting reading), and attention-deficit/hyperactivity disorder. Depression and anxiety were reported more often in both the autism and autism-traits groups.
Compared with the non-autism and autism-traits groups, more autistic participants reported being referred to or accessing care from specialists such as cardiologists, clinical psychologists, occupational therapists, rheumatologists, and urologists. Both the autism and autism-traits groups were also more likely to report having support from a carer.
Autistic participants reported greater daily challenges
Overall, most patients were employed either full- or part-time (54%). However, autistic participants were less likely to be employed than the other groups (44.7% vs. 56.4% in those with autism traits and 58.6% in non-autistic participants). They were also the most likely to report receiving disability benefits.
The survey also suggested that difficulties with everyday activities had a stronger impact on mental health among autistic participants. In contrast, for participants without autism or autism traits, difficulties with self-care appeared to play a larger role in mental health. Finally, females in the autism-traits group reported higher levels of anxiety and depression than other genders in that group, as well as compared with females in the autism and non-autism groups.
Overall, “this study indicates that autistic and non-autistic people may experience hEDS/HSD in different ways. This may, in turn, affect the type of supports that are most beneficial to them,” the researchers wrote. “While interventions exist to support healthcare experience of autistic people, the authors have not found any interventions specifically relating to symptomatic hypermobility health care for autistic people.”
