The Epilepsy Dossier project is a collaboration between Autistica, Epilepsy Research UK and Young Epilepsy. It will help us better understand epilepsy in autistic people.

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 Epilepsy Dossier will bring together information to build an understanding of what is currently known about autism and epilepsy.

The research process

The team at University College London will create a dossier of evidence bringing together research focusing on:

  • The demographics of autism and epilepsy - what we know about the age or gender of people affected.
  • The cognitive-behavioural factors - whether intellectual disability or mental health challenges are more common.
  • The biological factors - whether particular genetic syndromes are more common.
  • The economic aspects of having autism and epilepsy - the cost to autistic people or the cost-effectiveness of existing health care plans.

Who is involved?

The team are bringing together a range of experts with specialities in epilepsy, autism, mental health and economics. 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.

How is this project making a difference?

The Epilepsy Dossier will create a base of knowledge about autism and epilepsy by bringing together globally published, peer-reviewed studies. It will focus on the human and economic impact. From this foundation, we will be able to better inform future research and better plan future policy and health care choices.

How is the project funded?

The Epilepsy Dossier is co-funded by Young Epilepsy, Epilepsy Research UK and Autistica.