Personal tragedies, public crisis – report highlights early death in autism

Report highlights how adults on the autistic spectrum (including people with Asperger's Syndrome), are more likely than others to suffer early death

A new report from Autistica "Personal Tragedies, Public Crisis" published on 18th March 2016 highlights how adults on the autistic spectrum, which includes people diagnosed with Asperger's Syndrome, are more likely than others to suffer early death.

The report (available here) explains that autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people and affects how they make sense of the world around them. It exists on a spectrum affecting different people in different ways and with a range in the severity of effect.

Whilst some people diagnosed with autism also have a learning disability, this is by no means true of all.

The report states that a "high quality" Swedish study published in 2015 has shown that people on the autistic spectrum have an early mortality rate twice that of the general population dying more than 16 years earlier. Autistic adults with a learning disability were found to die more than 30 years before non-autistic people.

The report found that two leading causes of death were epilepsy and suicide.

Autistica state that:

• Autistic adults with a learning disability are 40 times more likely to die prematurely due to a neurological condition, with epilepsy the leading cause of death.
• Autistic adults without a learning disability are 9 times more likely to die from suicide

The report called for:

• 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

Austin Thornton, head of health and care at Wrigleys Solicitors said: "The Department of Health knows very well that health and care services for people diagnosed with autism are undeveloped and that all too often, their needs are not understood and their care plans are inappropriate. In a recent news item we reported a statement by the Public Accounts Committee to the effect that the NHS did not regard neurological conditions such as epilepsy as a priority (see the article here) and here we see that epilepsy is a leading cause of increased mortality in people on the autistic spectrum. It is clear that statutory services have been ignoring the needs of this group. The Department of Health has updated the autism strategy. But it needs to ensure that this is put into effect at a local  level with good quality and appropriate services."

March 2016