The pandemic paradox: a mixed methods participatory approach to understanding autistic adults’ experiences during COVID-19

Although researchers have attempted to understand the lived experiences of autistic adults during the COVID-19 pandemic, existing studies have noted a lack of participatory research. Adopting a truly participatory approach, two autistic researchers led this study alongside an autism advisory panel established to guide the national online survey from inception to the dissemination of results. The autistic community identified six domains of importance: (1) social connectedness, (2) community participation, (3) support needs, (4) educational outcomes, (5) learning experiences, and (6) employment. A convergent mixed methods design resulted in the largest representation of autistic adults’ experiences during the COVID-19 pandemic to date (N = 951). An integrated and narrated synopsis of autistic adults’ lived experiences revealed the paradoxical nature of public health measures as increasing and decreasing wellbeing, potential issues with the accuracy of proxy reports, and demographic differences. Improvements in education and approaches to learning are recommended for further exploration.