Autism in Adulthood (2025)
Authors: Lauren Bishop, Melica Nikahd, Bethany J. Wolf, Brian W. Patternson, Anne Longo, Deondray Radford, Emma Krantz, J. Madison Hyer, Brittany N. Hand
Abstract: Better identification of autistic people and increased life expectancy for people with intellectual and developmental disabilities have given rise to an urgent need to better understand end-of-life care in autistic people. We compared hospice utilization of autistic older adults with non-autistic older adults and examined if known inequities in hospice utilization among the general population are exacerbated among autistic older adults. We analyzed hospice claims from Medicare, which insures Americans older than 65 years and covers hospice costs. Our sample included 5468 autistic older adults and 10,934 matched population comparison older adults who died during 2013–2021. We used multivariable logistic regression to compare these groups on the odds of any, early, intermediate, and late hospice utilization. We defined early hospice utilization as at least 28 days before death, intermediate as 4–27 days before death, and late as within 3 days of death. Interaction terms were used to assess whether effects were modified by beneficiary’s sex, race, or rurality. In a sensitivity analysis, we repeated our analyses in unmatched samples. The autistic older adult and matched population comparison groups had similar odds of any hospice utilization (odds ratio [OR]: 1.05; 95% confidence interval [CI]: 0.98–1.13), early (OR: 1.01; 95% CI: 0.91–1.11), intermediate (OR: 1.03; 95% CI: 0.95–1.13), and late hospice (OR: 1.07; 95% CI: 0.96–1.19). In our models evaluating the impact of other known inequities, we did not find significant interactions between autism diagnostic status and sex, race, or rurality. Results were similar in the unmatched samples. Given the body of literature documenting health disparities in autistic people, our findings are heartening, suggesting that Medicare-enrolled autistic older adults experience similar receipt and timing of hospice as their non-autistic peers. Our findings highlight the potential power of health policies that provide zero-cost, universal benefits to Americans in reducing health care utilization disparities among autistic people.