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Friday, March 18, 2016

Autistic People Die Young

In The Politics of Autism, I write:
Autism often involves a range of other co-occurring conditions: intellectual disabilities (e.g., low IQ); delays in gross motor skills (e.g., walking, throwing) and fine motor skills (e.g., writing); attention problems and hyperactivity; anxiety; self-injurious behavior; unusual sensitivity to certain sounds, smells, or feelings; extreme food selectivity; and sleep disorders. For autistic people and their families, the co-occurring conditions may cause as much anguish as the autism itself.
Many analyses of autism speak as if it were only a childhood ailment and assume that parents are the main stakeholders. But most children with autism grow up to be adults with autism, and they suffer uniquely high levels of social isolation. Almost 40 percent of youth with an autism spectrum disorder never get together with friends, and 50 percent of never receive phone calls from friends. These figures are higher than for peers with intellectual disability, emotional disturbance, or learning disability. When school ends, many adults with autism have grim prospects. Though evidence is sparse, it seems that most do not find full-time jobs.Compared with other people their age, they have higher rates of depression, anxiety, bipolar disorder, and suicide attempts.
Ariana Eunjung Cha reports at The Washington Post:
Researchers looking into mortality trends and autism have made a troubling discovery: People on the autism spectrum are dying young — some 12 to 30 years earlier than might otherwise be expected.
The analysis, conducted by Sweden's Karolinska Institute and published in the British Journal of Psychiatry, found that the leading cause of premature death in autistic adults isn't due to diseases, such as heart ailments or cancer, that are the main killers in the general population. It's suicide.
The data, which includes information on 27,000 people with the social-communication disorder and about 2.5 million who do not have the diagnosis from Sweden's national registries, found that, on average, autistic adults die 18 years younger than their non-autistic counterparts.
An autistic person's age at death also appeared to be impacted by cognitive ability. Those with autism and a learning disability died 30 years earlier on average while those without intellectual impairment died 12 years earlier. Individuals considered to be on the "high-functioning" end of the spectrum with strong language skills — those who might have been diagnosed with Asperger's before the diagnostic criteria changed — still had double the risk of dying young as those without the condition.
From a report by Autistica (UK):
New research confirms the true scale of the hidden mortality crisis in autism. The inequality in outcomes for autistic people shown by this data is shameful, but we must not forget the real individuals and families behind these statistics. Every death is a personal tragedy and a national outrage. For years, society and the healthcare system have ignored the voices of devastated families who have lost autistic loved ones unnecessarily, and far too young. That ends now. We cannot accept a situation where many autistic people will never see their 40th birthday.
National and local government, research funders and industry, as well as the NHS and service providers, all have a responsibility to step up and tackle this issue. Autistica is totally committed to playing our part, raising at least £10m of new funding through our Autism Lifesavers Fund to find answers and start saving lives.