In partnership with Epilepsy Research UK and Young Epilepsy, we're pleased to publish a vital dossier of research commissioned to help us better understand epilepsy in autism.

The dossier is titled: Autism & Epilepsy: Laying out the evidence.

Why was the project needed?
Around 600,000 people in the UK are living with a diagnosis of epilepsy and up to 40% of them are also autistic. Sadly, epilepsy is one of the leading causes of early death for autistic people, who are more likely to have epilepsies which are resistant to standard treatments. Despite this, very little research has looked at the link between epilepsy and autism. The dossier brings together research to build an understanding of what is currently known about autism and epilepsy.

How was research conducted?

Led by Dr Colin Reilly, the team at University College London created a dossier of evidence citing research and community experience focusing on three themes:

  • Risk factors of co-occurring epilepsy in autistic people
  • Living with co-occurring epilepsy
  • Economic analysis of the costs of co-occurring autism and epilepsy.

The team collaborated with a range of professionals who had specialities in epilepsy, autism, mental health and economics. They also included a group of people with lived experience of autism and epilepsy who contributed their expertise and guided choices made by researchers.

Some key themes:

  • The factor most often associated with the occurrence of epilepsy in autistic people was learning difficulties or the presence of a learning disability.
  • Community members emphasised the need for professionals to have better awareness of the co-occurrence of autism and epilepsy, with improved support needed for autistic people during epilepsy assessments. They also called for greater family support and an understanding of the practical impacts of autism and epilepsy on things such as economic stability and sleep.
  • The report acknowledges a lack of research focusing on the economic impact of epilepsy in autism. While evidence suggests that autistic people with epilepsy are likely to have greater healthcare needs and, in turn, greater health costs; few studies have examined this.

The dossier also offers recommendations to improve supports for autistic people who have epilepsy and provides suggestions for future research priorities.

Read a lay snapshot of the dossier.