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

Summary

Many families and autistic individuals have raised concerns over early deaths in autistic people. 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.

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.

Content

This report from Autistica 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. These recommendations include calling on:

• Medical research funders to collaborate to rapidly increase our understanding of premature mortality in autism.
• The government to establish a National Autism Mortality Review and commit to significantly improved data collection.
• Service providers to develop clear and specific plans to prevent early death in autism.