People with autism could be dying decades younger than the rest of the population, according to a new report, which also called on the National Health Service (NHS) of the United Kingdom to review premature death among these patients.
Data including those from the Karolinska Institute in Sweden showed that people with autism die 18 years younger on average than others without the condition. These patients of autism and intellectual disability die 30 years ahead of their peers, with epilepsy as the leading cause of fatality.
Autism patients without intellectual impairment, on the other hand, die 12 years earlier on average, driven largely by suicide.
Autism research charity Autistica, which funded the new report, said that the research reveals the true situation behind the autism mortality crisis. It is now looking to raising £10 million ($14 million) for further research into 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," says [pdf] Autistica Chief Executive Jon Spiers, adding that the government down to individual care providers should "step up" to save more lives.
The data were taken from a massive epidemiological study and confirm earlier results from smaller international studies, added Autistica. However, they warned, practically no research has been conducted to learn optimal treatment of epilepsy and suicidal behavior among autistic individuals.
The authors — one of which was Dr. Tatja Hirvikoski, who dubbed the results "shocking and disheartening" — looked at the health records of 27,000 autistic adults, as well as used 2.7 million as a control group.
According to the findings, the risk of premature death from a neurological condition — specifically epilepsy — is 40 times higher among autistic adults with learning problems. Those without a learning disability are nine times more likely to die from suicide than the general population, with women most at risk.
In the United Kingdom alone, 1 percent of the population — or 700,000 people -— have autism spectrum disorder, which covers different difficulties and often requires lifelong specialized support. The cost of the disorder in the country is estimated to be at £32 billion ($46 billion) annually.
Steve Silberman, author of the book "Neurotribes" documenting autism history, echoed the study recommendations.
"[This is] 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 come at a terrible cost," he explains.
Gill Ackers, mother to 19-year-old autism patient Ellie, reported that her child recently started having seizures. She called for immediate proper response to the problem.
"We cannot simply stand by and watch people with autism die because of a lack of research and specialized care," she says.
The findings were discussed in the journal British Journal of Psychiatry.
Photo: Lance Neilson | Flickr
