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The COVID-19 pandemic: the experiences of young autistic people and their parents

A study on experiences of lockdown and returning to mainstream school for young autistic people and their families.

What has lockdown and school return been like for autistic children or young people who attend mainstream school and their families?

A research project set out to understand more about the experiences of autistic young people and their parents during the 2020 school closure, lockdown, and return to school. The researchers were interested in discussing the educational, social, and emotional aspects of these events with families.

The research team comprised UCL Institute of Education (IOE) academics, Dr Caroline Oliver, Dr Georgia Pavlopoulou and Professor Carol Vincent. 

The research was funded by the British Educational Research Association (BERA) and ran for seven months (October 2020 – April 2021).

See the briefing summary:

Background

Survey research by Pavlopoulou et al (2020) shows that while lockdown may potentially have increased pressures for some autistic young people, others benefitted from less social pressure, lesser sensory challenges, and more time spent on their own interests.

Our research built on these survey findings by speaking directly to parents and young people (aged between 10 and 18 years old).

Our research considered how changes to routine and transitioning back to school was experienced, especially since this may have caused anxiety for children and young people as they adjusted to a new set of requirements to maintain social distancing. However, we also considered that others may have welcomed the tighter regulations organising the school environment. 

We also considered how families’ relationships with schools were crucial in this period. The research team were interested in understanding more about how different families and schools were trying to secure the emotional stability and educational progress of the young people, as the effects of the pandemic continue.

Methodology

The research team worked with parents and where possible, autistic children and young people (aged between 10 and 18 years old) who attend mainstream school/college.

The research with parents was interview-based (either online or face to face, depending on government restrictions). Children who also wanted to take part could also choose to create photos/drawings/models as a prompt to talk about their experiences. 

The research team also worked with a co-production parents’ advisory group to include their feedback into the project’s approach, design and communications. 

Team
Outputs

Dr Caroline Oliver, Department of Education, Practice and Society, UCL Institute of Education:

2020 was highly unpredictable, and our research highlighted that more needs to be done in understanding the vastly different experiences of the pandemic for autistic children, young people and their families. Our team was proud to be working closely with families in a collaborative venture to gain insight into their unique experiences. We hope that sharing families’ stories can help inform wider strategies to improve their experiences of education, as well as families’ relationships with educators in mainstream schools."

Dr Georgia Pavlopoulou, Department of Psychology and Human Development, UCL Institute of Education:

Children on the autism spectrum are particularly vulnerable to being excluded from school. Research has shown that mainstream schools are not always fully sensitised nor equipped to respond to the needs of autistic students. Our research shows that lockdown and transitioning back to school can be difficult, especially when children must work in unfamiliar spaces in uncertain times. These conditions may affect family decision-making and autistic children’s desire for participation in mainstream schooling, leading to potential further exclusions. We must ensure that disruptions caused by the COVID-19 crisis do not result in rollbacks of the rights they have worked so hard to advance".