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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.

Do you have autistic children or young people who attend mainstream school? What has this year been like for your family? 

A new research project seeks to understand more about the particular experiences of autistic young people and their parents during the past few months of school closure, lockdown, and return to school. The researchers are interested in discussing the educational, social, and emotional aspects of these events with families.

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

The research is funded by the British Educational Research Association (BERA), running for seven months (October 2020 – April 2021). 

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.

Changes to routine and transitioning back to school may cause anxiety especially when children and young people must adjust to a new set of requirements to maintain social distancing. However, others may welcome the tighter regulations organising the school environment. 

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

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

Methodology

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

The research with parents will be interview-based (either on online or face to face, depending on government restrictions). If their child would also like to also take part, they can choose to create photos/drawings/models as a prompt to talk about their experiences. We will supply the materials they choose. 

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

Team

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

2020 continues to be highly unpredictable, and we know that much more needs to be done in understanding the vastly different experiences of the pandemic for disabled children, young people and their families. Our team is excited and proud to be working closely with families in this collaborative venture to gain insight into their unique experiences. We hope the research will offer findings that will be of use to facilitate the return to school for some children and young autistic people, who may find themselves fearful of return. The insights we gain from hearing families’ stories 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. Lockdown and transitioning back to school may 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".