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18 March 2016

Epilepsy named as a leading cause of premature death in autism

New research from Sweden has highlighted epilepsy as one of the two leading causes of premature mortality in people with autism.

A study from the renowned Karolinska Institute has shown that people with autism die 16 years younger than the general population, and that those who also have a learning disability die more than 30 years prematurely at an average age of 39.

Epilepsy and suicide

The study analysed data from 27,000 people with autism compared with almost three million people without the condition. Researchers highlighted epilepsy and suicide as two of the leading causes of premature mortality, although experts could not say why so many people with epilepsy die young.

Between 20-40 per cent of people with autism also have epilepsy, in comparison with one per cent of the general population. Those with a learning disability have a nine times higher than average risk of suicide.

Holistic approach

Commenting on the research, Epilepsy Society's medical director and professor of epilepsy at University College London, Ley Sander said: 'This study clearly backs up what we have been saying for some time, that most premature deaths in people with epilepsy are related to other conditions.

'We know that there is a strong link between epilepsy and cancer, cardiovascular and cerebrovascular diesease. Now this report confirms autism as another major consideration that must be addressed.

'It is apparent that we need new and validated screening instruments and guidelines to help with the early detection and treatment of these conditions. And we need to adopt a holistic approach in our care of patients so that their conditions are not being treated in isolation but instead as an integrated part of a properly devised care plan.

'We must also strive to understand the genetic architecture underlying both epilepsy and autism so that we can better understand the relationship between the two conditions and ascertain  why so many people are dying in the prime of their lives.'

Major new research

The national autism charity Autistica is now planning a five year project to fund major new research into autism mortality.

Autistica's chief executive Jon Spiers said: 'This new research confirms the true scale of the hidden mortality crisis in autism.

'The inequality in outcomes for autistic people shown in this data is shameful. We cannot accept a situation where many autistic people will never see their 40th birthday.'

Avoidable deaths campaign

Epilepsy Society has also launched its own campaign to end avoidable deaths in epilepsy. Almost 1,500 people affected by epilepsy have emailed their MPs calling for health secretary Jeremy Hunt to  commission a new national clinical audit into the number of epilepsy-related deaths.

You can join the campaign here.

Where to find help

To talk about concerns around epilepsy and premature mortality, please call Epilepsy Society’s helpline on 01494 601 400. 
Losing a loved one to epilepsy is rare but can happen. Not all epilepsy deaths are avoidable, though some may be. If you would like to talk to a bereavement counsellor, you can call SUDEP Action on 01235 772852.