Recording of Autism in English General Hospitals Between 2007 and 2023: Cohort Study Using Data Linkage

Background: Accurate, reliable, and consistent clinician recognition of autism during hospital admissions may promote the use of reasonable adjustments to care and may reduce health inequities. Our aim was to investigate the recording of autism in the records of autistic adults admitted to English general hospitals, time trends, and predictors of clinicians recording autism. Methods: This retrospective cohort study used routinely collected health data. We identified a cohort of adults with diagnosed autism who accessed mental health services and linked these with records of admissions to English general hospitals. We measured whether clinicians recorded autism in each admission. We calculated the proportion of admissions in which clinicians recorded autism for each year between 2007 and 2023. We used regression models to identify factors associated with the likelihood that clinicians documented autism during the admission. Results: In total, 4182 autistic adults together had 20,184 admissions. Admission level sensitivity of autism recording was 37.8% (95% confidence interval [CI:] 37.1%−38.5%). Clinicians were more likely to record autism in males, those with co-occurring intellectual disability, and those with a greater number of admissions. Recording of autism improved over time from 9.6% (95% CI: 5.5%–13.7%) admissions in 2008 to 48.5% (95% CI: 46.7%–50.4%) admissions in 2023. Conclusion: Clinical staff need to make increased efforts to recognize and record autism when people are admitted to the hospital. Routine linkage between clinical datasets across the health service, subject to appropriate data protection and governance procedures, and with an individual “opt-out,” if desired, could improve information available to clinicians. Health care providers must match recognition of autism with the necessary adjustments to care to improve outcomes and patient experience.