People with autism spectrum disorder can undoubtedly face many challenges throughout their lives. Research out today quantifies the toll these challenges can take on their longevity.
Scientists at Columbia University and the University of Colorado examined the medical records of people with autism on Medicaid. Their life expectancy at birth was nearly six years shorter than other Medicaid recipients and almost 14 years below that of the general population, the researchers found. Though dramatic-sounding, the findings line up with what we know about the health risks that people with autism are more susceptible to, according to David Mandell, an autism researcher not affiliated with the study.
“Although there are several well-done studies looking at the differences in risk of death between autistic people and the general population, calculating life expectancy is a much more powerful and intuitive way to show these differences, and the authors are to be applauded for providing these compelling statistics, which are carefully and appropriately calculated,” Mandell, a psychiatrist and director of the Center for Mental Health at the University of Pennsylvania Perelman School of Medicine, told Gizmodo.
The autism health gap
As Mandell notes, research has consistently found that autistic people have a harder time than the average person, health-wise. This has included studies showing that they tend to die earlier than the general population. According to the study authors, however, it’s been difficult to study the disparity in life expectancy due to a lack of robust age-specific mortality data.
To work around this limitation, the researchers turned to data from the Transformed Medicaid Statistical Information System and Children’s Health Insurance Program Statistical Information System. Importantly, this enhanced source of information allowed them to look at linked mortality data from Medicaid beneficiaries across all 50 states and Washington, D.C. They studied just over 2 million individuals with autism who were enrolled in Medicaid between 2000 and 2020.
The overall life expectancy at birth for people with autism during the study period was 64.9 years of age, the researchers calculated. This number is 5.6 years shorter than it was for Medicaid beneficiaries and 13.8 years shorter than it was for the general American public. Life expectancy was roughly the same for autistic men compared to women, but the gap between Medicaid beneficiaries and the general population was larger for autistic women, they further found. And though life expectancy for autistic people did increase over the study period, the gap remained about the same.
“Because autistic individuals often qualify for Medicaid because of disability, the comparison of Medicaid-enrolled autistic people with both the overall Medicaid population and the general population is reasonable; the true gap in life expectancy due to autism likely lies somewhere in between the 5.6-year difference with the Medicaid population and the 13.8-year difference with the general population,” Mandell said.
The researchers were also able to isolate the health conditions that people with autism died from more than would be expected, a concept known as excess mortality. Though excess mortality was seen across many different kinds of death, autistic people were especially more likely to die from preventable causes like influenza, malnutrition, drowning, and pneumonia. The team’s findings were published Thursday in the journal JAMA Network Open.
Making sense of it all
Mandell notes this life expectancy gap is about the same as that seen among people with schizophrenia. The studies that showed this gap with schizophrenia shifted people’s thinking about its harms, according to Mandell, and illustrated the importance of addressing both the mental and physical needs of people with the condition. It was a change that he hopes research like this can help make possible for autism as well.
“My hope is that studies like this lead to concerted, well-funded efforts to improve healthcare and outcomes, and reduce this very preventable mortality,” he said.
The study researchers note that while plenty of time and resources has been poured into unraveling the biology of autism, less focus has been paid to understanding and bettering the quality of life for people with autism. The team is optimistic their work can start to tip the scales more in that direction moving forward.
“Our findings can be directly translated into intervention programs targeting these preventable causes of death by improving home- and community-based services and primary care for autistic individuals, such as flu and pneumonia vaccines and nutrition assistance,” lead author Guohua Li, a professor of epidemiology at the Columbia Mailman School of Public Health, told Gizmodo.
