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Personal tragedies, public crisis: The urgent need for a national response to early death in autism

“Autistica has identified a stark failure in the delivery of healthcare to people with autism in the UK. There is an immediate need for health services to prioritise high quality risk reduction and for the research community to support the identification of risk, delivery of solutions and provision of novel interventions.”

Many families and autistic individuals have raised concerns over early deaths in autistic people. Ground-breaking new research now confirms the true scale of the mortality crisis in autism: autistic people die on average 16 years earlier than the general population. For those with autism and learning disabilities, the outlook is even more appalling, with this group dying more than 30 years before their time.

Research studies across the world have confirmed that autistic people are at an increased risk of early death. A large study from Sweden in late 2015 made this case stronger than ever by analysing a very large, high quality dataset to compare the general population, autistic people, and people with both autism and a learning disability.

Yet there is still very limited awareness and understanding of the scale of premature mortality for the 700,000 autistic people in the UK and hence very little action to date to reduce it. This hidden crisis demands a national response. Our report lays out the evidence and sets out recommendations for action by national and local government, research funders and industry, as well as the NHS and service providers.