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Working together to achieve real change for autistic people with epilepsy

James Cusack

Dr James Cusack

Autistica Chief Executive

Date Published: August 12, 2020

Author: James Matejka

In this blog, Dr James Cusack, the recently appointed Chief Executive of autism research charity Autistica, discusses the impact of epilepsy on autistic people, as well as their collaborations with organisations such as ERUK to bring research communities together to maximise impact and deliver change.

As an autism research charity, our goal is to deliver research that ensures autistic people and their families can live a long, happy, healthy life. Underpinning this goal is ensuring access to a range of rights which autistic people are often denied but most people take for granted, such as a right to healthcare, education, employment, care, and supports. One of the main issues that acts as a barrier to these rights for autistic people is co-occurring conditions such as epilepsy, which affects about 12% of autistic people.

Last year we were proud to announce a unique research collaboration with Epilepsy Research UK to reveal more about shared characteristics between autism and epilepsy.

The impact that epilepsy can have on the lives of autistic people is substantial. Epilepsy is a leading cause of early death in autism and we know that epilepsy is harder to treat in autistic people. Tragically, we have seen the impact that this can have amongst many of our supporters, and we are determined to change these outcomes in the future.

When we shared the shocking figures around autism and early death in 2016 in our report Personal Tragedies, Public Crisis, we committed to researching the link between autism and epilepsy in greater detail. The need for research is urgent. Autistic people are frequently excluded from epilepsy research, and people with epilepsy are frequently excluded from autism research. Concerningly, a review we commissioned found no evidence that autistic people had been included in a clinical trial of epilepsy treatments. This means that their effectiveness had not been demonstrated for autistic people with epilepsy.

We held a summit on epilepsy and autism with leading scientists, autistic people with epilepsy, families and other experts to set the agenda for research in this area. The overwhelming conclusion from that summit is that the scale of research required is enormous. We need basic science which helps us to understand where shared mechanisms exist, studies which look at the effectiveness and side effects of current treatments and new treatments. We also need to understand how issues like sleep and anxiety affect people.

One of the barriers to progress in this area is the lack of crossover between autism research (traditionally the domain of psychology and psychiatry) and epilepsy research (traditionally the domain of neurology). As charities, we also have to recognise that we too can be siloed if we’re not proactive. At Autistica, we’re not experts in epilepsy. We know that to deliver real change we must work in partnership to leverage resources and expertise. That’s why we’re so proud to be working with Epilepsy Research UK. By doing so we can bring research communities together and co-fund to ensure we’re having the maximum possible impact. This year we have co-funded the ERUK & Autistica Fellowship, awarded to Dr Charlotte Tye. This research will help us to understand how epilepsy develops in autistic children. We’re also proud to be working with Epilepsy Research UK and Young Epilepsy to support an autism and epilepsy evidence dossier that will pave the way for further action.

Both Autistica and Epilepsy Research UK know we can’t accept the status quo. Autistic people with epilepsy should be able to live a full life. With concerted action, investment, and partnership we will find new treatments to manage seizures, and support that will allow autistic people with epilepsy to thrive. The task is huge, but we are tackling issues which are solvable if we work together.

-Dr James Cusack

Related Readings

Find out more about Dr Charlotte Tye’s ERUK & Autistica Fellowship Award on investigating brain-based predictors of autism in infants with epilepsy here.