Autistic people are dying on average 16 years earlier than the general population, often through suicide or epilepsy, research has found.
Autism charity Autistica has called for a national response to what it calls a “hidden crisis”, including massive investment in research and an NHS England review of premature death in autism.
A report by Autistica, titled ‘Personal tragedies, public crisis’, includes recently-published data from the Karolinska Institute in Sweden showing that, on average, people with autism die 16 years younger than the general population. Those with autism and intellectual disability die 30 years before their non-autistic peers, with epilepsy the leading cause of death. Autistic adults with no intellectual disability die an average of 12 years earlier than the typical population, driven in large part by suicide.
Although autistic people are at an increased risk of dying early from virtually every cause of death, autistic adults with learning disabilities are 40 times more likely than the typical population to die prematurely from a neurological condition, particularly epilepsy. Autistic adults without a learning disability are 9 times more likely to die from suicide compared to the general public, with autistic women at the greatest risk.
The Swedish figures are taken from a large epidemiological research study and confirm previous findings from smaller studies of autism mortality risk across the globe. However, virtually no research has been done to determine how to optimally treat epilepsy and suicidal tendencies in autistic populations.
Autistica’s report puts forward recommendations for action and calls on the government to ensure national, regional and local care providers have clear and specific plans to reduce premature mortality in this group.
Autistica aims to raise £10 million to kickstart research to tackle early death in autism, but stress that given the scale of the problem the response needs to go far beyond the charity sector.
Jon Spiers, Autistica’s chief executive, 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. Everyone involved in supporting people on the autism spectrum from the government right down to local care providers has a responsibility to step up and start saving lives as soon as possible.”
Gill, mother to Ellie, a 19-year-old with autism who recently began having seizures, said: “Seeing your child suffer a seizure is shocking and painful enough. To know that as someone with autism they are also more likely to die early from epilepsy is a double blow. We need proper answers and we need them now. We cannot simply stand by and watch people with autism die because of a lack of research and specialised care.”
Steve Silberman, author of the recent bestseller Neurotribes, which documents the history of autism, is backing the campaign: “The shocking levels of premature death and suicide among people on the autism spectrum should be a wake-up call to governments and service providers worldwide: dramatic proof that bullying, lack of support, inadequate health care across the lifespan, insufficient allocation of resources to create options for housing and employment, and a failure to aggressively pursue research into better treatments for chronic anxiety and seizures comes at a terrible cost. As a society, we can longer afford to squander precious human lives and potential in this way.”
Mark Lever, chief executive of the National Autistic Society, added: “The 700,000 autistic people in the UK and their families will be deeply distressed by these findings. Our charity cannot, and will not, accept a world where autistic people are dying more than a decade earlier than the rest of the population.
“While this report is based on Swedish research, we have no reason to believe the situation would be that different here. Indeed, we fear it could be worse. The government and national health authorities must urgently investigate what’s going on in this country and start to put things right.
“Autistic people and their families need reassurance from government and the NHS that this is going to be taken seriously and action will be taken.”