go to content

Autistic People Are Dying Young And There's Not Enough Money To Find Out Why

The main reasons are epilepsy and suicide, but a chronic shortage of funding is slowing researchers' efforts to find the underlying causes.

Posted on

Autistic people die decades younger than the rest of the population, a report for an autism charity has found.

Autistica

On average, an autistic person's life is 16 years shorter than average, according to the charity Autistica. If an autistic person also has intellectual disabilities – which many do – then they live on average 30 years less, with a mean life expectancy of just 39. There are around 700,000 autistic people in the UK.

Autistica's report is based on data from a major study carried out in Sweden and published in November last year in the British Journal of Psychiatry.

There are several reasons for the shortened life expectancy, but one of the big ones is epilepsy.

That's especially true among autistic adults with learning disabilities, who are 40 times more likely to die of a neurological condition – such as epilepsy – than the average person.

It's not known why autism is so strongly linked to epilepsy. Professor Patrick Bolton, a psychiatrist at King's College London, told a Science Media Centre (SMC) briefing that there was a "pretty poor understanding" of the link.

However, Jon Spiers, Autistica's chief executive, told BuzzFeed News that a genetic connection was a promising avenue of research. "There have been 120 genes identified that are linked to autism, and that number grows weekly," he said. "And interestingly they also seem to be linked to epilepsy and schizophrenia, so there appears to be some sort of neurodevelopmental connection, though we're years away from knowing what it is."

Another reason for early death is suicide. Around 70% of autistic people have at least one mental health condition; around 40% have two or more.

ThinkStock

"Among among high-functioning people with autism [that is, people with IQs and language skills in the normal range], the main risk factor is suicide," said Bolton.

The Swedish study found suicide rates about nine times as high as in the general population. That translates to roughly 100 suicides per 100,000 people per year in Sweden, although the rates are slightly different in Britain. Dr Sarah Cassidy of Coventry University is quoted in the report as saying that 66% of autistic adults have contemplated suicide at one time or another.

But there are lots of other reasons. The Autistica report says autistic people are at greater risk of "virtually every cause of death".

In any given year, they're more likely to die of infections; various cancers; illnesses of the endocrine, circulatory, respiratory, digestive, and genitourinary systems; external causes such as accidents and violence; and all other causes the study looked at.

Exactly what's driving all of this isn't really known, because there hasn't been anywhere near enough research.

Pixelheadphoto / Getty Images

"The evidence base for why people are dying so young is poor," Spiers told an SMC briefing. "Social factors, biological factors, autistic people being more prone to mental health issues epilepsy – there's no single issue, there's a large set of complex factors."

And that's because autism research, especially for adult autism, is very poorly funded.

There are only three autism research charities in the country, according to Spiers. He told BuzzFeed News that Autistica is "by far the largest" of the three. But all three together only get a total of £4 million in research funding. By comparison, the charity Cancer Research UK reported a total income of £522 million in the 2014-15 financial years.

The picture is even starker for research into autistic adults, because the large majority of that research money goes to studying the development of autism in children. Spiers said that "for every adult with autism, less than £1 a year is spent on research into autism in adulthood". An earlier Autistica report said that for every £1 million spent on care for autistic people, just £180 was spent on research.

Tom Chivers is a science writer for BuzzFeed and is based in London.

Contact Tom Chivers at tom.chivers@buzzfeed.com.

Got a confidential tip? Submit it here.