It took a pandemic: Perspectives on impact, stress, and telehealth from caregivers of people with autism

•A primary cause of parent-reported stress during the pandemic for autistic people is impaired emotion regulation.•Loss of structure and normal routine contributed to parent-reported stress as well.•The pandemic prompted many families to try telehealth for the first time. Shelter in place mandates due to the COVID-19 pandemic left caregivers to determine how to best meet the therapeutic requirements of their children with autism spectrum disorder (ASD). Understanding the challenges faced by families, and their experiences using telehealth for the first time, may help make services sustainable in future public health emergencies. A sample of 70 caregivers of people with ASD from across the US completed an anonymous online survey. Results indicate that impaired emotion regulation was a primary contributor of parent-reported stress for persons with ASD during the pandemic, while loss of established structure and routine contributed to parental stress. Nearly half the sample reported using telehealth for the first time. Many caregivers were appreciative that telehealth permitted continuation of services, but expressed concerns about limited effectiveness due in part to their children’s social communication problems.