03 July 2020

After conducting a survey with 449 UK-based parents and family carers of autistic children and young people, academics from the University of Bedfordshire, University College London (UCL) and University of East London (UEL) have published their findings to help policy-makers further understand how the Covid-19 lockdown has affected autistic people and their families.

The results from this collaborative research project have highlighted that, despite the relaxed legislation on lockdown measures for autistic people, some 86 per cent of participants thought that the needs of autistic people and their families were not adequately planned for or addressed by officials during the pandemic.

Dr Chris Papadopoulos from Bedfordshire's Institute for Health Research, Dr Georgia Pavlopoulou of UCL's Institute of Education and Dr Rebecca Wood from University of East London wanted to understand how the coronavirus pandemic, the Coronavirus Act (2020) and the lockdown had impacted on families of autistic children and young people, particularly in relation to their caregiving experiences and wellbeing.

They also wanted to consider if parents' very conceptualisation of care and support (once removed) had shifted and had caused them to re-evaluate their needs and rights.

Many of the 449 participants said that they often struggled to access public services even before lockdown and felt that social distancing was already "the norm" for them, due to negative reactions, rejection and stigma they often face in public. However, some 70 per cent still reported that their daily routines had significantly changed since the pandemic began.

While 58 per cent of participants confirmed they still had access to at least one type of specialist support during lockdown, the survey identified a wide range of new worries and challenges that parents and family carers faced.

In particular, many experienced difficulty in communicating new behaviours, such as new hand washing techniques and social distancing, and struggled to shop for foods their children relied upon for regulation and wellbeing reasons.

These struggles, combined with a lack of respite and a strong fear of becoming ill themselves, led to an increase in anxiety, sleep difficulties and alcohol consumption.
However, many families also reported reduced anxiety and stress due to having to face less stigma and discrimination in their everyday lives, highlighting the ongoing need for public education, understanding and acceptance of autism.

Considering the results, Dr Papadopoulos, Dr Pavlopoulou and Dr Wood have provided recommendations for policy-makers to ensure families of autistic children and young people feel confident in the level of support available to them during future public health crises.

This includes the representation of a diversity of voices in the decision-making process to make sure that the needs and rights of autistic people and their families are taken into account from the beginning.

These preliminary findings provide vital insights into the experiences of families of autistic children and young people during lockdown from which education, health and social service providers could draw important lessons,"

Dr Rebecca Wood, UEL senior lecturer in special education, said.

Dr Chris Papadopoulos, principal lecturer in public health with University of Bedfordshire's School of Healthcare Practice, said, "We need to make sure that we listen to the voices of our participants so that in a post-Covid-19 world, we are doing much more to protect families from the preventable anxieties, social pressures and discrimination they have endured for too long.

"What is important is that we leverage our findings going forwards. Our data shows that services can learn to adapt and support carers, so further planning and consideration around service delivery methods that can remotely support disabled people and prime carers is needed. Furthermore, the government needs to request that each NHS Trust has dedicated autism leads who can help coordinate and support such processes for the wider autistic community."

Dr Georgia Pavlopoulou, senior teaching fellow in psychology and mental health at UCL, said, "For many families, after some time passed, the changes will have had a positive impact on their wellbeing and some will feel better than perhaps they felt before.

"In some cases, families have enjoyed unexpected freedoms by not feeling pressure to conform to pre-Covid-19 world expectations.

"There is a lot of learning that can be had from understanding why exactly there have been some positives, and leveraging that learning to improve educational, health and social services in the future. In order to achieve this, we need to involve autistic people and their families in co-designing and co-delivering services."

The full report, including these key learnings and expert recommendations for future planning, can be read online.

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