Autism and Hypermobility
Background
Recent surveys from the autism community have highlighted elevated rates of Hypermobility and Ehlers-Danlos Syndrome (EDS) in autistic people relative to non-autistic people (Ward et al., 2023). This aligns with a growing body of work showing an association between autism and connective tissue conditions (Baeza-Velasco et al., 2025). However, like autism, EDS is heterogeneous as well and is expressed differently depending on the specific subtype.
What we are interested in is how EDS is expressed in autistic people, and whether this differs to how it is characterised in non-autistic people. It may be that autistic people are vulnerable to a certain subtype of EDS, for example.
Why We Are Doing This Research
The aim of the study is to develop a novel questionnaire that assesses symptoms of hypermobility. This will help us understand whether certain types of EDS are more common in autistic people than in non-autistic people. It will also help us to understand whether autistic people are more likely to experience sub-clinical forms of EDS (that is, symptoms of EDS that might impact daily life, but are not severe enough to lead to a diagnosis).
Method
In collaboration with the autism community, we will develop a hypermobility quotient which assesses symptoms of hypermobility and EDS in autistic people. We will then refine this instrument and deploy it in non-autistic samples, including people with and without EDS.
Community Engagement
Phase 1 of this project entails soliciting lived experience of EDS and hypermobility from members of the autistic community with EDS. This feedback will then be incorporated into a refined version of our hypermobility assessment tool, such that lived experience will be embedded into how EDS is assessed.
Potential Impact
If autism overlaps with a specific sub-type of EDS, then this will help understand the potential impact of EDS on the autism community and assist with clinical assessment. More broadly, as our investigations into autism and physical health continue, understanding whether a specific subtype of EDS is overrepresented in autism will uncover additional information on health-related quality of life in autism.
Results
We anticipate that the results of this study will be available towards the end of 2027. Summary findings will be shared on this page when available.
Staff:
- Professor Sir Simon Baron-Cohen
- Professor Carrie Allison
- Dr Matt Fysh
- Dr Alex Tsompanidis
- Dr Elizabeth Weir
- Dr Kevin A. Matlock
- Omar Al-Rubaie