Healthcare use and work disability among individuals diagnosed with autism spectrum disorder (ASD) - a matched comparison cohort study

Abstract Purpose To examine longitudinal patterns of healthcare utilisation and work disability before and after diagnosis of autism spectrum disorder (ASD). Methods We delineated an incident cohort of individuals diagnosed with ASD aged 5–55 using Swedish register data (2003–2018; N = 64,691) matched to siblings and people from the general population without an ASD diagnosis. Annual probabilities of psychiatric and somatic healthcare use, sickness absence, and disability pension were estimated from five years pre- to ten years post-diagnosis using generalised estimating equations. Odds ratios (OR) and incidence rate ratios (IRR) estimating likelihood, frequency, and duration of outcomes in the five years post-diagnosis were estimated with hurdle models, adjusted for sociodemographic factors. Results The probability psychiatric healthcare use was elevated among people diagnosed with ASD several years before diagnosis (e.g., 23% at year − 3) and remained above 40% thereafter. Individuals with ASD had higher odds of psychiatric outpatient visits (adjusted OR (OR) = 64.66, 95% CI 62.54–66.84) and inpatient stays (OR 11.8, 95% CI 11.37–12.14) than people without ASD from the general population, with attenuated but similar patterns in sibling comparisons (OR 54.81, 95% CI 51.35–58.50 & OR 7.42, 95% CI 7.06–7.81, respectively). Psychiatric outpatient visits occurred at twice the rate (adjusted IRR = 2.15, 2.11–2.19) and inpatient stays were substantially longer (IRR 3.71, 95% CI 2.43–4.01) compared with the general population. One third of individuals diagnosed in adulthood were granted disability pension within five years. Conclusions Individuals diagnosed with ASD experience substantial healthcare and work disability needs several years before and after diagnosis, underscoring the need for integrated, long-term support.