Caroline Oliver, Carol Vincent and Georgia Pavlopoulou from UCL’s Institute of Education, discuss research exploring parent and autistic children and young peoples' experiences of the 2020 lockdown. 

UCL’s Institute of Education (IoE), funded by the British Educational Research Association, conducted research in late 2020 with 17 parents of autistic children and young people (CYP) attending mainstream schools in England, as well as six autistic CYP themselves. The aim was to generate insight into their lived experiences of the 2020 lockdown, home-schooling, virtual learning and return to school. 

Key findings

Lockdown conditions, such as restricted social contact and lack of spontaneity, were already deeply familiar for autistic CYP and their parents. Pre-pandemic many CYP were already struggling with access to full educational experiences. Some were missing extensive periods of schooling, some were excluded, while others were being educated in school, but outside the classroom. Some CYP had pre-existing and severe mental health challenges, including anxiety around school attendance. Parents were already working hard to secure their children’s educational progress, and recognised that unfortunately the pandemic now meant that others experienced something similar. 

Retreating into the privacy of home came as a (partial) relief for many families. Respite from the everyday challenges of securing diagnoses and support, and ensuring their children’s attendance and progress at school. Autistic CYP also spoke of feelings of safety and comfort of being at home, free from the sensory and social challenges of school. They enjoyed spending time on their intense interests. Parents saw positive changes in their children’s behaviour when they did not have to attend school. 

Parents had more responsibilities in supporting their children to access schoolwork, as they lost vital support from families, support groups and therapies. Parents experienced a heavy sense of responsibility to minimise the impact of school closures on their children’s educational progress. School materials were rarely made more accessible for their children, and so parents often abandoned the schoolwork sent home and devised their own educational strategies. They lost their usual sources of respite from extended family members and friends.

Autistic CYP and their parents were keen to return to school, but few parents desired a return to the stressors of school life as it was. Most autistic CYP were glad to return to school and seemed to benefit from the increased simplicity of COVID-safe schools, for example:

• breaktimes with smaller groups
• fewer big events
• reduced school traffic
• one-way systems around schools. 

Pupils wanted a return to the structure of the school day, and opportunities to see friends and key staff members who helped them. In turn parents echoed their appreciation of staff who ‘got’ their child and understood how ‘small things’ matter, such as sensory differences or sudden changes in school routines. This insight on the part of a few teachers was, however, far from widespread or integrated. As such, many parents felt anxious about returning to the familiar stresses of school-life, especially when special educational needs provisions like nurture rooms remained closed. Few desired a return to ‘business as usual’. 

In summary, lockdown offered a temporary release from the challenges of everyday school life for autistic CYP, yet families experienced new difficulties through a lack of suitable educational materials and isolation from support. The findings present a troubling picture of the marginalisation of autistic CYP, where the pandemic has cast a harsh light on the ordinary workings of mainstream schools. 

Recommendations 

Opportunities to improve provision for autistic CYP’s education in mainstream schools, post-pandemic. 

1. Prioritise pupil wellbeing, particularly for autistic CYP as they recover from the disruptions and fragmented learning of the past year. This work would recognise their unique strengths and need for clarity around procedures, connectedness and sensory comfort. 

2. Recognise the mental health strains caused by mainstream school environments and normative expectations of behaviour for autistic CYP. Encourage staff to be flexible in expectations of how pupils ‘should’ behave and how schools ‘should’ run, for example in policies such as attendance, uniform and behaviour. Have a mental health champion for parents and autistic CYP to discuss reasonable adjustments that match their needs. 

3. Reconsider what makes a good learning environment for autistic CYP. This will involve:

• reinstating lost support services such as nurture spaces – often seen as dispensable during the pandemic – or providing alternative adapted provision
• incorporating the simplicity of Covid-safety measures into everyday school provision on a more permanent basis, providing clearer, quieter and more predictable environments that would benefit autistic children’s learning. 

4. Adapt recovery plans for autistic CYP in partnership with CYP and their parents. Additional ‘catch-up’ sessions via large holiday playschemes or after-school tutoring in schools, may not be appropriate for all pupils.

5. For future emergency schooling, review how tasks can be made accessible for pupils who are autistic and with co-occurring conditions such as dyspraxia or dyslexia. This is especially so when online learning is required, where CYP would benefit from more opportunities for interaction and specific guidance. 

6. Develop a whole-school support strategy. Rather than seeing autism awareness and acceptance (for example of sensory challenges, impact of changed routines) as the responsibility of one or two staff members who ‘get’ autistic CYP, complete inclusion requires this to extend to a whole-school culture of knowledge for all staff and students.

This article has been kindly reproduced from the UCL website: The experiences of autistic young people and their parents of lockdown and the reopening of schools: Key messages for policy makers, schools and families.

Further information

Oliver, C., Pavlopoulou, G., Vincent, C. Prof. (2021) The experiences of autistic young people and their parents of lockdown & the reopening of schools. British Educational Research Association (BERA).