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.
Dr Rebecca Wood, senior lecturer in special education at the University of East London, said: