The Impact of COVID-19 on Autistic People in the United Kingdom

The COVID-19 pandemic and the responses to it, including lockdowns, have affected different people in different ways. Many of those effects will be shared by both autistic people and people who are not autistic. However, autistic people may experience the same changes in distinct, often more pronounced ways. 

Autistic people can experience persistent difficulties in social interaction and communication, they may have rigid or repetitive behaviours, restricted interests, and may be resistant to change. They can also face challenges in education settings, in gaining and maintaining employment, and in initiating and sustaining social relationships. Some may have sensory difficulties or behaviours perceived as challenging or distressed. A high proportion of autistic people have mental health problems, with anxiety and depression especially prevalent. Autistic people may also have learning disabilities. 

Every autistic person is an individual. Many people lead completely independent lives, and their autism may be invisible to those around them. Some individuals will need ongoing social or health care support, and some require no external help or support. Some people live alone, some with families, while others live in supported accommodation or in larger congregate care settings. This diversity came through very clearly in the range of experiences revealed by the study 

The study was conducted by Sarah Pais and Martin Knapp, members of PIRU based in the Care Policy and Evaluation Centre at the London School of Economics and Political Science.

PIRU was asked by the Department of Health and Social Care (DHSC) to look at the impacts of COVID-19 on autistic people of all ages and to identify ways to manage or mitigate any adverse consequences of COVID-19 on this group and their families.

This rapid study commenced in summer 2020. It was conducted in close liaison with DHSC officials and the DHSC Autism Strategy Group, to which presentations of preliminary findings were given.

Communication from government: Government communication regarding COVID-19 was difficult to understand and follow for many autistic people. Clear communication and transparency of decision-making from government are important and can help autistic people follow advice and guidance. 

Schools and education: Access to education for autistic children during lockdown was not consistent. Continued input from schools and maintaining contact with parents and families are vital if schools need to be closed in the future. 

Grocery shopping: Accessing groceries during lockdown was a struggle for many autistic people. Ensuring everyone has access to necessary grocery shopping, especially vulnerable groups like autistic people, must be a priority. 

Mental health and access to medical care: COVID-19 and its consequences affected the mental health of autistic people in a range of ways. Mental and physical health care should be accessible to all members of the population. This is particularly the case for autistic people who are more likely to have mental health problems and may find it harder to access services. 

Caring responsibilities and respite: Renewed support for family members and carers is needed. Many were exhausted during lockdown, especially when external support and respite care were stopped or reduced. 

The COVID-19 pandemic is having both immediate and enduring effects. Ongoing attention to the longer-term implications for autistic people and their families is imperative; particularly in relation to educational opportunity, health, employment and social inclusion – all of which can have profound effects on quality of life. 

 Limitations 

We examined all the relevant evidence that was emerging on the impacts of COVID-19 on autistic people. But it was obviously not possible to comprehensively cover how all autistic people in the UK are experiencing the pandemic. Indeed, some autistic people struggle to have, or may never have, a voice in this and other discourses. Some of the inevitable gaps in our knowledge of the impacts of COVID-19 match broader evidence limitations on autistic people and families that were present before the pandemic.