Last year Epilepsy Research UK commissioned a new research project with charities Autistica and Young Epilepsy to address the lack of understanding of epilepsy in autistic people and to highlight the need for greater research investment in this area. The result of this project is a dossier compiled by Dr Colin Reilly from University College London, called ‘Autism and Epilepsy: Laying out the evidence’. In this Research Blog, Dr Reilly shares some of the key findings ahead of the dossier’s publication next week and highlights important research questions for the future.
Why is this research needed?
The rate of co-occurring epilepsy in autistic people is much higher than in the general population. A recent review found that 12.1% of autistic people had epilepsy (1-1.5% of the general population are autistic). Additionally, another review found that people with epilepsy have a higher prevalence of autism (6.3% are also autistic) than those without epilepsy. However, it has previously been reported that up to 40% of people with epilepsy meet the criteria for a clinical diagnosis of autism. Co-occurring epilepsy and autism contribute to decreased quality of life and increased risk of mortality.
Despite the prevalence of these co-occurring conditions, people with autism have often been excluded from epilepsy studies. As a result, we don’t fully understand why epilepsy is so common among autistic people, or if their seizures should be treated differently. Epilepsy Research UK, Autistica and Young Epilepsy commissioned this vital research project to address this gap in our knowledge and investigate the interaction between the two conditions.
What were the key findings of this research project?
The Autism and Epilepsy: Laying out the Evidence project had three parts:
- A literature review focusing on the risk factors for the occurrence of epilepsy in autistic people.
A systematic literature review examines all the relevant research studies and summarises them to answer a research question. Our review revealed that the factor most consistently associated with the co-occurrence was the presence of learning disability. A range of other factors were found to be associated with the co-occurrence in some but not all studies, including female gender and presence of developmental regression in autistic people.
- Insights into the lived experiences of autistic people with epilepsy
The project included a Patient and Public Involvement (PPI) group consisting of autistic people with epilepsy, as well as caregivers of people with both conditions. This group helped identify the key issues with regards to living with autism and epilepsy. The PPI group highlighted the various needs of individuals with both conditions, including difficulties with epilepsy-related investigations (e.g. EEG, MRI), a lack of integrated health care, limited knowledge of autism among epilepsy professionals, and the potential impact of anti-epileptic drugs on autistic symptoms.
- A review of studies of the economic costs of having both epilepsy and autism.
Finally, the economic aspects of both conditions were considered by examining previous studies focusing on the financial costs of co-occurring autism and epilepsy. There were few previous studies of the economic impact of having both conditions, although it is clear that the co-occurrence can increase the risk of hospital visits and economic costs. The PPI group suggested that having both conditions can have a very significant economic impact including affecting the ability to gain employment and career progression.
How will these findings inform future research and help people living with epilepsy and autism?
The findings of the project have significant implications for current practices and future research and highlighted the urgent need for increased research investment. In terms of current practice, there is a need to:
- Improve awareness of the frequent co-occurrence in national guidelines.
- Make hospital visits for epilepsy-related investigations more autism-friendly.
- Improve awareness of manifestation of autism among epilepsy professionals.
- Screen individuals with epilepsy for autism and other mental health conditions.
- Ensure that individuals with both conditions have access to evidence-based therapies for co-occurring mental health conditions.
The need for future research was identified in the ‘Epilepsy Summit Report: How can research into autism and epilepsy save lives?’ (https://www.autistica.org.uk/our-research/collaborative-workshops-or-summits/epilepsy-summit#3-medication-and-ons). In addition to this report, the current project has highlighted the following areas where more research is needed:
- Further consideration of factors such as gender and developmental regression with respect to epilepsy and autism. A better understanding of the possible role of these factors would aid identification and possibly even early interventions.
- Research on the lived experiences of autistic people with epilepsy and their families. It is important that autistic people who also have a learning disability are
- Health economics studies with a consideration of both direct (eg hospital visits or medication) and indirect costs (e.g. reduction of work time or educational underachievement) borne by affected individuals and their families.
What has this project highlighted?
Epilepsy is a neurological condition where the treatments are well defined and there is the possibility of seizure freedom. However, there is a risk that the focus on reducing seizures may overshadow the wider needs of those affected, with the impacts of autism being overlooked, particularly when seizures are frequent. In the case of autism, there are less well-defined supports or interventions, and even words like ‘treatment’ may not be appropriate. These differences can sometimes lead to a ‘clash’ of cultures, with epilepsy clinicians not fully understanding the impact of autism due to a focus on just treating seizures. Additionally, there is a risk that clinicians working in epilepsy fail to recognise that autism presents differently across individuals with respect to intellectual abilities, required support and disruptions to everyday functioning.
Overall, this research highlights the need for increased research investment in this area, as well as for researchers and practitioners to collaborate across disciplines in order to understand the needs of the affected people and their families. A focus on one condition will lead to a lack of integrated care, common language and common understanding, which will hinder progress in both clinical practice and research in my view. There is a very great need to include individuals with both conditions when planning care pathways and developing research projects.
-Dr Colin Reilly