Autism and epilepsy - limited knowledge

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Today sees the publication of the ‘Autism and Epilepsy: Laying out the Evidence’ report, a first of its kind investigation into the co-occurrence of epilepsy and autism commissioned last year by Epilepsy Research UK, Autistica and Young Epilepsy.

Carried out by Dr Colin Reilly at University College London, the research looked at the lack of scientific understanding of epilepsy in autistic people and highlights the urgent need for greater research investment in this area.

As outlined in the report, autistic people with epilepsy face some of the starkest inequalities in the world. Approximately 8.4 million people have both conditions around the globe and on average have poorer quality of life, poorer health and shorter life expectancy. There has been an awareness of this for some time, but a lack of evidence-based strategic action has blocked progress.

The report aims to provide that evidence in order to support further research investment and highlights some important future research questions.

The review of existing literature, the Patient and Public Involvement (PPI) group discussions and analysis of the economic impact of living with both conditions highlighted the paucity of research in this area, and the urgent need for more research investment. This includes:

Further research on long-term non-healthcare costs and outcomes
Key relevant economic interventions for this population remain unclear and need to be identified
Qualitative research involving autistic people who have epilepsy and their families
Research into the impact that being autistic and having epilepsy has on employment prospects

To date, there had been no published data on the lived experience of people with both conditions. The project’s Patient and Public Involvement (PPI) group consisted of autistic people with epilepsy and caregivers of people with both conditions. This group highlighted many factors which have not yet been considered in formal studies

We still know little about the ways in which epilepsy and autism interact with one another and the impact that living with both conditions has on individuals.

:(

That's very sad, but thanks for posting.

My daughter is autistic and has Epilepsy. She was denied life insurance.

Awful