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Sarah Pais

Martin Knapp

August 3rd, 2021

What was life like for autistic children during the pandemic?

0 comments | 8 shares

Estimated reading time: 4 minutes

Sarah Pais

Martin Knapp

August 3rd, 2021

What was life like for autistic children during the pandemic?

0 comments | 8 shares

Estimated reading time: 4 minutes

Sarah Pais and Martin Knapp (LSE) look at the impact school closures had on autistic children.

The importance of school as a space for learning, stimulation, structure, emotional containment and respite was evident from listening to and reading about the experiences of autistic children and their families. Overall experiences appear to be varied and diverse, with much depending on the individual establishment, specific teachers or auxiliary staff, the circumstances of the child and family and any additional support that remained available. Some schools were very supportive, some had no contact with autistic pupils during lockdown, and some (including special schools) continued to operate during lockdown.

A survey of children with special educational needs (the majority of whom were autistic) conducted early in the pandemic found considerable differences in parental satisfaction with the support provided to families during the lockdown. Similar results were found in another study of only autistic children: just over a half of the families still had access to at least one type of specialist support during lockdown, although this was not always felt to be timely or sufficient. Another study carried out later in the pandemic underlined that support for distance-learning was variable in both mainstream and specialist schools, and that families reported benefits when therapeutic support continued and support from school was comprehensive.

Within the insight group, a family whose autistic child attended a mainstream school approached the school for educational assistance as they had received no contact from the school during lockdown. No help was subsequently given, with the explanation that it was ‘tough for everyone’. Similarly, another mother was upset by the absence of communication from her child’s school, especially after she explained to them that she was autistic and required lots of information in order to make decisions. It was also noted that many parents felt a sense of shame when they asked for more help or greater clarity. This had the effect, in the words of one mother, of ‘shutting me down’.

Parents in the insight group all hoped for some regular communication, whether the school was mainstream or specialist. Regular contact from school through telephone calls, support from a special educational needs coordinator and resources for home learning were all described as important means of support during lockdown.

One mother spoke of the school ‘washing their hands’ when it came to supporting her child. However, the educational psychologist attached to the school remained in contact of her own volition as she feared the child’s mental health would deteriorate during lockdown. The loss of specialist input that some children usually received (such as educational psychology, speech and language therapy) was particularly felt by parents. Difficulties engaging in services remotely were also reported to be a problem.

Risk assessments were highlighted as a potential barrier to access education. The House of Commons Education Committee, sitting in July 2020, heard that risk assessment procedures were sometimes being used as a ‘blanket excuse’ to prevent children with special educational needs from re-accessing educational settings. The Committee was concerned with all children and young people with special educational needs and not specifically with autistic children, but their findings provide a sense of what an autistic child may experience, as a large number of children with special educational needs are autistic. A survey of parents of children with special educational needs found that many reported that either no risk assessment had been conducted or that they did not know if one had been conducted. Parental perception was that risk assessment could be used as a tool to prevent or dissuade families from returning their children to school. Children who were on Education Health Care Plans (of whom many would be autistic) were deemed by government to be vulnerable and therefore could access schooling during the lockdown period. However, only a small number actually did so. This may be due in part to challenges with access to school placements.

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Photo: Nenad Stojokic via a CC BY 2.0 licence

In contrast to these problems, many other parents have described exemplary experiences of home-schooling during lockdown. “His school have provided a wonderful home-school learning experience …with teaching assistants available during each lesson, speech and language therapy available once a week for parents and children. He’s worked harder and learnt more in lockdown than he would have done at school.” One family spoke of the much-needed respite and psychological containment provided by their child’s special school, which continued to function during lockdown. This feeling was reiterated in a survey of children with special educational needs which reported that many parents described schools as ‘incredibly supportive’.

Return to school

Many children and parents were apprehensive about the return to school at the start of the new academic year. For some parents, this was related to the recognition that their child had been happier and more relaxed at home during lockdown and the school holidays. Within the insight group, concerns regarding new and unfamiliar rules in schools caused some anxiety, and it was felt that children and their families needed information as early as possible to help them prepare. There were also worries that children might struggle to return to school after such an extended period away.

A survey by Ambitious about Autism reported that the majority of autistic children and young people were worried about returning to school, college or university. This included concerns that appropriate support would not be in place, worries about being unsafe due to COVID-19 and apprehension about catching up with studies. Children and parents in this survey described losing sleep from worry about the return to education.

For other families, the return to school was welcomed ‘because of the increasing challenging verbal and physical behaviours shown at home’. Many parents of children with special educational needs found it particularly challenging to educate their child at home. They were also concerned about the long-term impacts of the lockdown on their children’s mental health, as well as their social and academic progress.

Impressions from a return to school survey of disabled children (including autistic children) conducted in the autumn of 2020, suggest that children were still able to access school adequately, but access to wider services such as mental health, transport, social care and therapies continued to be problematic. There were also reports in the mainstream media that some children with special educational needs, including autism, were unable to access school due to compliance with new infection control guidelines. It is likely that these barriers to access were not related specifically to autism but to other medical conditions and their management (such as tracheostomies).

…[He] looked forward to returning to school. He missed his friends and teachers. He missed school routine.

Within a week of returning to school he realised his school routine had changed for COVID reasons – temperature checks, bubbles, washing hands etc. – and he was tired at the end of a day.

He has worn a mask on local authority transport to and from school to keep himself and others safe. He understands and follows COVID rules.

He has had a good 8 weeks back to school and his school report for the term was really positive.

He is in a good place. His school has plans in place to support the children if they need to shield or take time to quarantine.

I feel happy and confident about the next term.

Concerns over loss of skills

Parents described their children ‘regressing’ after not going to school for several months. They were concerned that previous developmental and educational gains would be lost. There was a sense that an autistic child will find it harder to recover compared to their peers who were not autistic. There were also worries that the loss of social skills (as there had been no opportunity to practice) may have repercussions for the child’s future. Skills such as turn-taking, sharing, group activities and diverse conversations may not have been possible to develop within the home. There were also concerns over deterioration in friendships, due to not being able to meet as a result of COVID-19 restrictions, especially as some autistic children may only have a small number of friends.

This post represents the views of the authors and not those of the COVID-19 blog, nor LSE. It is an extract from The Impact of COVID-19 on Autistic People in the United Kingdom, Final Report, Policy Innovation and Evaluation Research Unit, Care Policy and Evaluation Centre, LSE.

The authors are very grateful to the many people who shared research findings, draft papers, personal experiences, suggestions and comments on presentations and drafts of the report. We are particularly grateful to the members of the insight group convened by Autistica for their contributions. The work in this report is funded by the NIHR Policy Research Programme through its core support to the Policy Innovation and Evaluation Research Unit (Project No: PR-PRU-1217-20602). The views expressed are those of the authors and are not necessarily those of the NIHR or the Department of Health and Social Care.

About the author

Sarah Pais

Dr Sarah Pais is a member of the NIHR Policy Innovation and Evaluation Research Unit based in the Care Policy and Evaluation Centre at LSE.

martin knapp

Martin Knapp

Martin Knapp is Professor of Social Policy and Professor within the Care Policy and Evaluation Centre at LSE. He has also been Director of the NIHR School for Social Care Research since 2009.

Posted In: #LSEThinks | Health and social care | The experience of young people

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