Information sheet for parents

We would like to invite you to take in part in a research project, that examines the experiences of parents and children and young autistic people as a result of the COVID-19 pandemic.

We are particularly interested in families’ experiences of the closure of mainstream schools, lockdown, and the re-opening of schools in September. The research is funded by BERA (the British Educational Research Association). It will run for seven months, from October 2020 to April 2021. 

Caroline, Georgia and Carol are a team of experienced researchers from the UCL Institute of Education. We have backgrounds in research with autistic children and young people with autism (Georgia) and research with parents (Carol and Caroline). Caroline has autistic children who attend mainstream schools.

We think that the topic of this research is particularly important because autistic children and young people will have their own, distinctive experiences of this period.

They may find that changes to routine cause considerable anxiety. Lockdown and transitioning back to school may be difficult, especially when children must maintain social distancing and potentially work in unfamiliar spaces/with unfamiliar teachers. Some children may have benefitted from staying at home, experiencing less social pressure, fewer sensory challenges and more time spent on activities they chose.

We would like to increase our knowledge about the experiences of families, by speaking with parents and children directly. We believe our findings from these conversations will provide schools and policy makers with useful information about how to make the return to school, and school life in general, easier and more productive for autistic children and young people. 

This is a first-step, small-scale study. We wish to talk to 15 mothers or fathers who have an autistic child at a mainstream school. We would like also to talk to some children and young people (between the ages of 10 and 18), but we appreciate that not all will want to take part (if you are happy with your child potentially participating, we will provide separate information for them to help them decide).

We are contacting parents through social media groups and organisations that support families with autistic children. We hope to make our sample of families diverse in terms of background and ethnicity.

We will arrange a meeting with you at a date and time that suits you. If you would prefer a face to face conversation, we can visit you in your home, or if you would prefer an online meeting, we will arrange a zoom/skype call, again at a time and date that suits you.

We envisage our conversation would take about 45-60 minutes. Some of the issues we would like to talk about include:

• your family’s experiences of lockdown and home-schooling
• decision-making on returning to school
• support offered by the school
• experiences of returning to school in September.

We will give you a £15 supermarket voucher to thank you for your time.

If both you and your child are happy for them to take part, then we would like to ask them to represent their experiences of lockdown and return to school, choosing from materials which we will supply (such as a camera, drawing materials, modelling clay, lego).

We will let these models/pictures guide our conversation with them. However, if they would prefer to just talk, that too is fine with us. We will discuss the best way to work with your children, and tailor our approach. 

We don’t believe so. All the conversations will be confidential, and we will not use the real names of anyone in your family, the children’s schools, your workplaces or your locality in anything we write about the research. All the information we collect will be anonymised and stored securely on our university password protected sites. It will be destroyed after 5 years.

We are very aware that the pandemic, lockdown and the easing of lockdown have been and remain challenging situations for many of us and can generate considerable anxiety.

If you or your child were to become distressed or feel uncomfortable during our conversation, we will immediately pause the interview and ask if you wish to stop. Similarly, you and/or your child can withdraw from the research at any time without needing to give a reason. 

This project has been reviewed and approved by the UCL IOE Research Ethics Committee. 

We will produce separate briefings to share the findings with:

• families
• young autistic people
• schools
• relevant government departments (Department for Education, Cabinet Office on Disability). 

We will also produce a report and write blogs for BERA (the research funders) and UCL. As we said above, no individual participant will be identifiable in these reports.

The research promises to have policy impact by identifying ways in which mainstream schools can change after the lockdown to improve the experiences and outcomes of autistic children and young people, as well as their teachers and parents. 

No. It is entirely up to you whether or not you choose to take part. We hope that if you do choose to be involved then you will find it a valuable experience.