Research on the Covid-19 pandemic draws attention to its unequal impacts on differently positioned families, particularly highlighting the acute struggles of disadvantaged families (see for example Moss et al., 2020; Twamley et al., 2021). Emerging evidence also highlights the unique impacts on families of children with additional needs, including autistic children and young people (CYP). Our project (Oliver et al., 2021), funded by BERA, sought to understand the experiences of lockdown and school return for families of autistic CYP attending mainstream schools. We spoke with 17 parents and six children, our focus informed by a parents’ advisory panel. Below we reflect on the parents’ data.
Emerging international research identifies challenges faced by parents of autistic children in lockdown (Ameis et al., 2020). Given the loss of therapeutic interventions and much-needed routines, the pandemic has exacerbated many parents’ already poor mental and physical health (Tokatly Latzer et al., 2021).
Our qualitative research provides further insights into the experiences of parents with autistic CYP at mainstream schools. What is striking is the extent to which the pandemic’s hallmarks – disrupted schooling and social isolation – were experienced as a continuation of an already stressful, pre-pandemic pattern of life for these families. Parents felt that the pandemic meant others now experienced something of their routine reality (see also Pavlopoulou et al., 2020). Many of the children were already not accessing full mainstream education, with some on roll but, in practice, not attending. Others were being educated in school, but outside the classroom. Many participants already experienced limited social contact and spontaneity. Some of the children had pre-existing and severe mental health challenges.
‘What is striking is the extent to which the pandemic’s hallmarks – disrupted schooling and social isolation – were experienced as a continuation of an already stressful, pre-pandemic pattern of life for families with autistic children.’
While our research (Oliver et al., 2021) corroborated a picture of multiple challenges of lockdown learning and heightened emotional demands, this was not the full story. Rather, all the participant families reported how lockdown and non-attendance at school was experienced initially as an enormous relief (see also Tokatly Latzer et al., 2021). Lockdown offered families a release from the pressures associated with routine school attendance (or avoidance). Parents reported that their children were calmer when unencumbered by the sensory and social challenges of attending mainstream school. Some observed that their children’s anxiety levels, patterns of self-harming or aggressive incidents diminished while sleep improved. As one mother noted, in the early days of the pandemic, she could see ‘the bliss on [my child’s] face’. Parents could also suspend the draining ‘battles’ many felt that they were engaged in with schools and local authorities to ensure adequate support for their children.
There were similar parental reflections on the period from January–March 2021. Those children attending school benefited from smaller classes, while those at home appreciated learning at their own pace. Neither set of parents were looking forward to returning to ‘business as usual’ when schools reopened.
Throughout our conversations, parents expressed a longing for a deeper knowledge of autism within schools (see also Lilley 2015). Parents often struggled to be heard by education professionals and were very grateful when individual staff demonstrated understanding. This might be through appreciating the complexities of sensory challenges facing their children – such as uncomfortable school uniforms and loud environments. It might be through anticipating the impacts of minor changes in school routines and practices. For parents, such ‘small stuff’ was actually the ‘big stuff’, with serious ramifications when not well understood.
While there is much more to say on this topic – for instance, how autistic CYP experienced online learning, the (often limited) adaptation of learning materials provided, and how pupils experienced return (or have not returned) – in conclusion we might provocatively pose the question as to whether the stories we heard were a reflection on the pandemic at all. Rather, the families’ narratives of the first lockdown provide a unique insight (and troubling critique) of ‘normal’ mainstream school life.
As society opens up, there are opportunities for schools to incorporate some of the learning from lockdown. These families’ stories illustrate how mainstream education is often failing autistic children and young people. Deeper appreciation of autism by more teachers would profoundly impact autistic children’s school lives. Yet families’ experiences also indicate that a more radical reshaping is required if mainstream education is to provide environments that allow autistic children to flourish.
This blog is based on the report, The Experiences of Autistic Young People & Their Parents of Lockdown & the Reopening of Schools, published by BERA as part of the research report series, Education & Covid-19: BERA Small Grants Fund research.
Ameis, S.H., Lai, M-C., Mulsant, B.H., & Szatmari, P. (2020). Coping, fostering resilience, and driving care innovation for autistic people and their families during the COVID-19 pandemic and beyond. Molecular Autism, 11(61). https://doi.org/10.1186/s13229-020-00365-y
Lilley (2015). Trading places: Autism Inclusion Disorder and school change. International Journal of Inclusive Education, 19(4), 379–396. https://doi.org/10.1080/13603116.2014.935813
Moss, G., Allen, R., Bradbury, A., Duncan, S., Harmey, S., & Levy, R. (2020) Primary teachers’ experience of the COVID-19 lockdown: Eight key messages for policymakers going forward. UCL Institute of Education. https://discovery.ucl.ac.uk/id/eprint/10103669/1/Moss_DCDT%20Report%201%20Final.pdf
Oliver, C., Vincent, C., & Pavlopoulou, G. (2021). The experiences of autistic young people & their parents of lockdown & the reopening of schools (Education & Covid-19 series). British Educational Research Association. https://www.bera.ac.uk/publication/the-experiences-of-autistic-young-people-their-parents-of-lockdown-the-reopening-of-schools
Pavlopoulou G., Wood, R., & Papadopoulos C. (2020). Impact of Covid-19 on the experiences of parents and family carers of autistic children and young people in the UK. UCL Research Briefing.
Tokatly Latzer, I., Leitner, Y., & Karnieli-Miller, O. (2021). Core experiences of parents of children with autism during the COVID-19 pandemic lockdown. Autism, 25(4). https://doi.org/10.1177/1362361320984317
Twamley K., Iqbal H., & Faircloth C. (2021). Families and community in the time of COVID. British Sociological Association Annual Conference.