Effects of the Early Phase of COVID-19 on the Autistic Community in Sweden: A Qualitative Multi-Informant Study Linking to ICF

Abstract

While the COVID-19 pandemic is ongoing, early outcome studies indicate severe and pervasive global effects of the pandemic and associated measures to prevent the spread of the virus. General population studies, as well as insight into the outcomes for particular groups, will be necessary in order to mitigate potentially long-term effects as well as to prepare for future epidemics or pandemics. The pandemic conditions have been marked by rapid and abrupt changes and unpredictability which are circumstances that leave the autistic population particularly vulnerable to adverse outcomes following the distinctive features of the diagnosis. Studies are only beginning to delineate the outcomes of the global autism community and the present study adds to these findings by providing a local, multi-perspective, qualitative analysis of the lived experiences of the Swedish autism community. In this study, autistic youth and adults, caregivers of autistic individuals, as well as representatives of Swedish interest organizations were interviewed. Thematic analysis was performed on the population as a whole and patterns of results were formalized according to the International Classification of Function, Disability and Health (ICF-CY). Participants report wide-ranging adverse outcomes of the pandemic relating to mental health and access to support, participation in daily activities and socialization, education, and work as well as parental resources. However, participants also report positive outcomes relating to a reduction in specific social and everyday demands, and normalization of lived experiences. Additionally, interviews outlined some strategies used to cope during pandemic conditions. Implications of these findings are discussed.