A longitudinal study of the mental health of autistic children and adolescents and their parents during COVID-19: Part 2, qualitative findings

Abstract

In Part 1 of this UK-based study, across four timepoints between March and October 2020, autistic children and young people showed higher levels of parent-reported depression and anxiety symptoms than those with other special educational needs and disabilities. In this study, we draw on qualitative data from 478 parents/carers of autistic pupils and those with other special educational needs and disabilities to conduct a longitudinal qualitative content analysis examining stability and change in the mental health of these young people, and their parents/carers, during the first 6 months of the COVID-19 pandemic. Worry and psychological distress were dominant categories at all timepoints and we noted that, in line with quantitative findings, worry in autistic pupils stayed stable over time but decreased for those with other special educational needs and disabilities. The third dominant category was wellbeing and we saw evidence that removing demands, especially the demand to attend school, was a driver of wellbeing for a significant minority of pupils, particularly autistic pupils, and their parents/carers. Overall, we observed no differences in mental health experiences between the two groups of parents, also mirroring quantitative findings. Lay abstract We know that autistic children and young people, and their caregivers, are at increased risk of mental ill health. We asked whether the first 6 months of COVID-19 exacerbated that risk, and whether the implications were different for autistic pupils and their caregivers, than for those with other special educational needs and difficulties. In a linked paper, we found that caregivers of autistic pupils reported higher levels of depression and anxiety symptoms in their children than parents of children with other special educational needs and difficulties (Toseeb & Asbury, 2022). For pupils with other special educational needs and difficulties, their parent-reported anxiety symptoms eased over time while remaining high throughout for autistic pupils. There were no differences in mental health and wellbeing between caregivers of autistic pupils and those with other special educational needs and difficulties. Here, we used parents’ written descriptions of their own and their child’s mental health during the first 6 months of COVID-19 to explore these linked findings in greater depth. We identified strong evidence of worry and distress for all, but most prominently autistic children and young people. Our finding that worry and distress declined over time for pupils with other special educational needs and difficulties, but not for autistic pupils, was supported and we observed a few differences between caregivers. We also found evidence of wellbeing throughout the sample, and examples of some (mainly autistic) pupils benefitting from a reduction in demands (e.g. going to school). This has implications for our understanding of the school experience for autistic pupils. Findings suggest that the mental health of autistic children and young people may have been disproportionately affected during the first 6 months of COVID-19 and that careful consideration of optimal support, from both health and education perspectives, is vital.