Leading charities Epilepsy Research UK and Autistica announced today a unique life-saving collaboration to improve epilepsy treatment for autistic people.
600,000 people in the UK are living with a diagnosis of epilepsy and up to 40% of them are also autistic. Tragically, 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. A number of recent high-profile deaths of autistic people in NHS care have been the direct result of poorly treated epilepsy. Yet people on the autism spectrum have been systematically excluded from epilepsy research for decades so very little is understood about why epilepsies are so common in this group and how autistic people’s seizures should be treated.
Following Autistica’s 2016 ‘Personal Tragedies, Public Crisis’ report which highlighted shocking rates of early death in autistic people, they hosted a global summit on autism and epilepsy with international research leaders, experts by experience. This was followed in early 2019 by Epilepsy Research UK’s International Expert Workshop on Epilepsy and Neurodevelopmental disorders which also brought together world leading experts and partner organisations, including Autistica. These meetings presented the latest research and seeded new research ideas and collaborations.
Both organisations have since made epilepsy in autism a research priority. They are now inviting high quality Fellowship applications to address the causes, prevention and clinical management of epilepsy in autistic people.
Lorraine is mother to an autistic son, she explains:
‘Nobody told us that our son had a high chance of developing epilepsy. When he started having seizures two years ago, there was nobody that seemed to understand the two. We are desperate for more research and clinicians that know how to treat the two conditions.’
Epilepsy Research UK CEO, Maxine Smeaton, says “It has long been known that there is a relationship between autism and epilepsy but research is desperately needed to increase our knowledge of the dynamics involved so that we can offer better treatment, management and prevention of the worst effects of epilepsy in autism. We are looking forward to working in partnership with Autistica to take this work forward”.
Autistica CEO, Jon Spiers, says “We’re delighted to be joining forces with another ground-breaking charity to fund a future research leader who can work across autism and epilepsy. Finding new ways to detect and treat epilepsies in some of our nation’s most vulnerable citizens could not be more important. We also urge other research funders to seize the opportunity to include more autistic people in epilepsy research and, ultimately to save lives.”