BU Research Blog

BU MRes Student Sarah Clark Shares Lived-Experience Insights on “Living with Autism and Ehlers-Danlos Syndrome” at the international online EDS ECHO Mental Health Summit on 1st November. 

Sarah graduated last November from her MSc in Clinical and Developmental Neuropsychology and has since embarked on a part-time MRes research project titled “Time to diagnosis reduction for autistic people with Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder”. This work is deeply informed by Sarah’s own late diagnosis of Autism in May 2022, and her lived experience of co-occurring hEDS (diagnosed in 2020).

Harnessing this dual perspective, Sarah is committed to amplifying the voices of those navigating complex diagnostic pathways, advocating for change, and supporting trauma-informed, neuro-affirming approaches to healthcare.

Sarah works for Autism Hampshire as one of their expert by experience Autism trainers on the Oliver McGowan Training Programme, and also sits as a Patient Expert in the EDS International Consortium (Psychiatric and Psychological Aspects Working Group).

Sarah is part of the Autism Ambassador Scheme in Hampshire and attended the yearly Autism Ambassador Conference in Winchester on 6^th November, where a three-minute video of her achievements over the past year was shown: https://youtu.be/Ric_IT_QTPk (everyone at the conference was amazed at how someone could do so many things in one year!)

The Summit

The EDS ECHO Mental Health Summit convened specialists from mental-health and hypermobility disciplines, along with people with lived experience, to explore the intersections of chronic pain, interoception, emotional regulation, identity and support needs.

Sarah’s presentation — titled “Living with Autism & EDS” — situated personal narrative alongside her MSc and MRes lived-experience research, offering attendees a unique lens on the lived reality from both a personal and research perspective.

Additionally, Sarah’s abstract was accepted for a Poster Presentation of her MRes Research at the EDS Scientific Symposium in Toronto in September.

.