“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.

Emotionally Based School Avoidance in the Aftermath of the COVID-19 Pandemic: Neurodiversity, Agency and Belonging in School

“…Qualitative work that foregrounds the voices of neurodivergent children and young people is still relatively rare [63]. A longitudinal study foregrounding autistic pupils' firstperson perspectives on their experiences in mainstream school in the north of England from age 11 to 14 included a final data collection point during intermittent lockdowns in 2020-2021 [47,64]. Some children learned at home throughout this period, while others held a priority school place during the second period of school closures.…”

“…Moreover, some pupils relished the opportunity to pursue interest-led learning from home (e.g., studying a new language), although this could come at the expense of following the school curriculum. On the return to school in 2021, small class "bubbles" designed to limit viral transmission also reduced the social and sensory chaos of the school environment [64]. For these children, the disruption of the pandemic gave an insight into alternative ways of learning, and the return to school as normal in 2021-2022 is likely to have been particularly challenging.…”

Exploring the experiences of autistic pupils through creative research methods: Reflections on a participatory approach

“…They can be an effective method for working with children (Greig et al, 2007), as the flexibility of the interview removes the need to stay 'on topic' and allows for the emergence of new topics (Pitt et al, 2021). Semi-structured interviews allow the participant and the researcher to work together to co-create meaning, thus encouraging participatory practice (Kara, 2015), and have been used effectively in studies investigating and amplifying the experiences and voices of autistic children and young people (e.g., Calder et al, 2013;Hamilton et al, 2023;Howard et al, 2019;Malloy et al, 2020). However, the social communication demands of a one-to-one interview may be aversive for some neurodivergent children.…”

Parent perceptions of social well‐being in children with special educational needs during COVID‐19: A mixed‐methods analysis

“…For children with autism, several studies in a range of countries found that social isolation experienced during school closures led to difficulties with emotional regulation, loneliness, behavioural difficulties, and higher anxiety levels (e.g., Amorim et al, 2020; Fox et al, 2023; Hamilton et al, 2023; Pellicano et al, 2021; Simpson & Adams, 2022). These same studies also found, however, that a small number of children in their sample experienced relief from social challenges and pressures.…”