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Sunday, March 11, 2018

Too Many Autistic People Die Young

In The Politics of Autism, I write:
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.
David Mandell writes at Autism:
People with autism think about killing themselves and die from suicide at a horrifying rate. Small studies find that 20%–40% of adults with autism have considered killing themselves (Hedley et al., 2017) and 15% report making at least one attempt (Balfe and Tantam, 2010). A large Swedish cohort study found that adults with autism are nine times more likely to die from suicide than other adults (Hirvikoski et al., 2016). Studies of children with autism find that 11% have suicidal ideation and 4%–7% have made suicide attempts (Mayes et al., 2013), and the risk of making a suicide attempt is six times that of other children (Moses, 2017).
As we think about the urgent task of reducing premature mortality in people with autism, it is worth revisiting some passages from the Autistica report that deserve as much public attention as those describing suicide risk. The risk of early mortality from all causes among people with autism is nearly twice that of the general population. Those with autism and no accompanying learning disability die an average of 16 years earlier. Those with autism and intellectual or learning disabilities die an average of 30 years earlier (Hirvikoski et al., 2016). The study by Hirvikoski and colleagues represents the largest and most careful study of mortality and autism to date. They found that 12% of deaths were due to suicide; 22% were due to diseases of the circulatory system, which include heart disease and stroke; and 12% were due to neoplasms, which include cancers. Diseases of the nervous system, which include epilepsy, accounted for 9% of deaths. These numbers vary greatly between individuals with and without intellectual disability. Suicides accounted for 14% of deaths in autistic adults without intellectual disability and 4% of deaths in those with intellectual disability. Death from nervous system diseases accounted for 4% of deaths in those without and 19% of those with intellectual disability.
By no means am I suggesting that we divert attention or resources from determining the best ways to reduce suicide risk in people with autism, but we must not lose sight of our primary goal, which should be to reduce all premature mortality and increase quality of life among people with autism. It would be a great service if future studies of mortality in autism provided attributable fractions, with the goal of directing public health efforts. Studies to date suggest that there is no single cause or even small set of causes that accounts for all the excess mortality in autism. Until we know exactly where to direct our efforts, improving primary and preventive care for people with autism (Nicolaidis and Raymaker, 2013), and addressing the healthcare needs that are common to all adults but exacerbated in adults with autism, may result in better outcomes than specialty programs that address one risk factor at a time.