The Epilepsy Dossier project is a collaboration between Autistica, Epilepsy Research Institute UK (formerly Epilepsy Research UK) and Young Epilepsy. The Epilepsy Dossier helps us 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 types of epilepsy which are resistant to standard treatments. Despite this, very little research has looked at the link between epilepsy and autism.

The Epilepsy Dossier brought together information of what is currently known about autism and epilepsy.

The research process

The team at University College London created 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 learning disability or mental health challenges are more common.
• The biological factors - whether particular genetic syndromes are more common.
• The economic aspects of being autistic with epilepsy - the cost to autistic people or the cost-effectiveness of existing health care plans.

Who is involved?

The team brought together a range of experts with specialities in epilepsy, autism, mental health and economics. They also included a group of autistic people with epilepsy and family members who contributed their expertise to guide the researchers.

How is this project making a difference?

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

How is the project funded?

The Epilepsy Dossier is co-funded by Young Epilepsy, Epilepsy Research Institute UK (formerly Epilepsy Research UK) and Autistica.

• 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 support for autistic people who have epilepsy and provides suggestions for future research priorities.
  
  Read a lay snapshot of the dossier.