“I’m able to function better when I know there's a beginning and an end time”: Autistic adolescents’ experiences of lockdowns during the COVID-19 pandemic

Abstract

Background and Aims Survey research indicates that autistic children and young people experienced high levels of anxiety and isolation during lockdowns in response to the coronavirus disease 2019 (COVID-19) pandemic. Meanwhile, qualitative studies suggest that there may have been some benefits in the switch to home learning for this population. However, the majority of evidence to date comes from parent reports; the current study aimed to triangulate the perspectives of autistic youth and their parents in order to more fully understand the impact of periods of lockdown on education, relationships, and wellbeing. Methods Thirteen semistructured interviews were conducted (six with adolescents, seven with parents) to explore the experiences of a group of autistic youth aged 13–14 years (Year 9 of mainstream education in England) during a period of intermittent lockdown. Data were analysed using reflexive thematic analysis. Results Two broad themes capturing commonality and diversity in the adolescents’ experiences of lockdown were developed. (1) “Different stress, not less stress” encapsulates the finding that, despite the enforced removal from the school environment providing short-term relief, new stressors contributed to consistently high levels of anxiety for the young people throughout lockdown periods. Stressors included managing home-school within the family unit, navigating time without boundaries, and anxiety about the virus. (2) “A shrunken world” reflects the heightened impact of losing access to meaningful social relationships, extracurricular pursuits, and health-promoting activities for autistic youth. Discussion The early stages of the global response to the COVID-19 pandemic caused serious disruption to education for many children and young people globally; our findings provide further evidence that the impact was particularly salient for autistic youth in terms of social isolation, lost learning, and heightened anxiety. Implications These findings underscore the necessity of long-term support for the education, social needs, and mental health of autistic young people in the aftermath of lockdowns in response to COVID-19.