In partnership with Autistica and Young Epilepsy, we are proud to announce the team who will be compiling the Epilepsy Dossier, a vital new project starting in September that aims to better understand the prevalence and incidence of epilepsy in autism.

Why is this research needed?

Autistic people with epilepsy face significant challenges and inequalities. We know that of the 600,000 people in the UK living epilepsy, up to 40% of them are also autistic. Approximately 8.4 million people worldwide have both conditions. Sadly, epilepsy is one of the leading causes of early death for autistic people, who are more likely to have epilepsies resistant to standard treatments. More research is vital to increase our understanding of epilepsy and autism and how the two conditions interact.

This project will highlight potential areas in the field where research is needed, and where strategic or collaborative action can be taken to make a real difference to people who are autistic and have epilepsy.

Who is involved?

Educational psychologist and postdoctoral researcher Dr Colin Reilly at University College London will carry out the study. Bringing together a range of experts with specialities in epilepsy, autism, mental health and economics, the team will create a dossier of evidence focusing on the demographics of autism and epilepsy, cognitive-behavioural factors, biological factors including genetics, and the economic aspects of living with both conditions. They are also including a group of people with lived experience of autism and epilepsy who will contribute their expertise and guide choices made by researchers.

Following the evidence

The project builds on learnings from ERUK’s 2019 International Expert Workshop on Epilepsy and Neurodevelopmental disorders, which brought together world-leading experts and partner organisations, including Autistica and Young Epilepsy. The workshop showcased the latest research and seeded new research ideas and collaborations, and the three organisations made epilepsy in autism a research priority. ERUK has since awarded a joint fellowship with Autistica aiming to reveal more about shared characteristics between autism and epilepsy (read more here), and is currently inviting applications for a joint fellowship with Young Epilepsy, to enable research into the causes, diagnosis and treatments of childhood epilepsies (find more information here).