National Autism Indicators Report: Health Care Experiences During the COVID-19 Pandemic

The COVID-19 pandemic changed how autistic people accessed services and engaged in their communities, ultimately impacting their quality of life. Access to appropriate services and accommodations help autistic individuals in maintaining employment, pursuing education, caring for their health, and establishing independence. Changes in access to services result in long-term consequences, which can be dire for autistic people. In an effort to improve policies and programs for autistic individuals, documentation of disruptions in accessing services during the COVID-19 pandemic informs better evidence-based practices for future public health emergencies.

This report examines the impact of the COVID-19 pandemic on health and healthcare among autistic children and adults. To build a comprehensive picture, we included various data sources, including health care claims and administrative records. We explored the availability of services for autistic children based on caregiver report from the National Survey of Children’s Health (NSCH). To understand hospitalization covered by both private and public health insurance, we used national emergency hospitalization records (via the National Emergency Department Sample [NEDS]) and hospital admissions data (via the National Inpatient Sample [NIS]).  Finally, we used patient medical records from Kaiser Permanente Northern California (KPNC) to look at service utilization among adult autistic patients from Northern California over the same period. These data sources cover various populations, some of which provide nationally representative pictures of autistic children and adults, others cover specific or regional populations but cover diverse populations in terms of income and race and ethnicity.