People with autism spectrum disorder (ASD) in the United States face a 14-year deficit in life expectancy, according to a new study by researchers at Columbia University Mailman School of Public Health and University of Colorado Anschutz. The study provides one of the first large-scale estimates of age-specific death rates and life expectancy among people with ASD. The findings are published in JAMA Network Open.
Autism research has historically focused on biology, genetics, environmental risk factors, and diagnosis, with less attention to long-term health outcomes, crucial for understanding the natural history of the disorder and for developing intervention programs. The new findings highlight substantial disparities in life expectancy and identify causes of excess mortality that may be preventable.
"Autism is a complex lifelong condition with substantial costs to the U.S. healthcare system," said Guohua Li, DrPH, MD, professor of Epidemiology at Columbia Mailman School of Public Health. "Elevated mortality risk in people with ASD has been reported since late 1980s, but life expectancy for the autistic population remained unknown because of inadequate data on age-specific death rates."
To examine life expectancy and causes of excess mortality, the researchers analyzed data from the Transformed Medicaid Statistical Information System and Children's Health Insurance Program Statistical Information System. The enhanced Medicaid data include mortality information linked to the National Death Index for beneficiaries in all 50 states and the District of Columbia from 2000 through 2020.
During the 21-year study period, 2,048,046 individuals with ASD were enrolled in Medicaid. Of these, 76 percent were male; 49 percent were non-Hispanic White, 15 percent were non-Hispanic Black, and 17 percent were Hispanic. A total of 18,268 Medicaid beneficiaries with ASD died between 2000 and 2020.
Life expectancy at birth for Medicaid beneficiaries with ASD was 64.9 years—5.6 years shorter than for the overall Medicaid population and 13.8 years shorter than for the U.S. general population. Estimates were broadly similar across sex and racial and ethnic groups, although the gap relative to the general population was greater for women than for men.
Life expectancy among Medicaid beneficiaries with ASD increased by 1.7 years during the study period, from 63.9 years in 2000–2004 to 65.6 years in 2015–2019. However, the gap compared with both the broader Medicaid population and the U.S. general population persisted.
Medicaid beneficiaries with ASD had a 44 percent higher mortality risk than other Medicaid beneficiaries. Excess mortality occurred across most categories of diseases and health conditions, with particularly heightened risk from influenza, malnutrition, pneumonitis, non-transport accidents, drowning, and pneumonia.
The researchers also found that, compared with the general population, autistic women experienced a greater life expectancy deficit than autistic men, largely associated with higher rates of psychiatric comorbidities and related excess mortality.
"Life expectancy for the autistic population enrolled in Medicaid in the United States is about 65 years, which is same as for the general population in Haiti or Angola," said Carolyn DiGuiseppi, MD, PhD, professor of epidemiology at Colorado School of Public Health. "This finding is sobering."
"The good news is that much of the excess mortality among people with ASD is avoidable through improved social support, primary care, and home- and community-based services," Said Li, who is also professor of anesthesiology at Vagelos College of Physicians and Surgeons.
Co-authors are Matthew T. Russell and Caleb Ing, Columbia Mailman School of Public Health and Vagelos College of Physicians and Surgeons, Columbia University; and Ashley Blanchard, Vagelos College of Physicians and Surgeons, Columbia University.
The study was supported by National Institutes of Health grant 5R01HD108138 .
The authors report having no competing interests.
Columbia University Mailman School of Public Health
