Greater support needed for carers of autistic children during lockdown

Families of autistic children have been greatly impacted by lockdown reveals a study by UCL, the University of East London and the University of Bedfordshire.

It found that despite the relaxed legislation on lockdown measures for autistic people brought into effect in April, 86% of those surveyed still felt that the needs of autistic people and their families were not adequately planned for or addressed by officials during the pandemic.

The authors suggest that any future policy development related to public health crises must ensure that there is input from a diversity of voices, to ensure that the needs and rights of those with disabilities and their families are taken into account.

The study, available on UCL Discovery, explores survey responses from 449 participants, including 401 mothers, 35 fathers and 13 carers (including siblings).

Of those surveyed, 70% said that their daily routines had significantly changed since the pandemic began, with only 58% reporting that they still had access to at least one type of specialist support. The removal of respite has had a particularly big impact on families; study findings show a significant increase in levels of anxiety, sleep difficulties and alcohol consumption among carers, with many describing a strong fear of becoming ill themselves, and of the impact this might have on their autistic child.

However, the study also revealed that forms of social distancing were already the norm among families looking to avoid negative reactions from the general public to their autistic child, with some having to plan when to go shopping, and consider alternative ways of doing this, prior to the lockdown. Furthermore, the findings also showed that families faced a high level of difficulty accessing healthcare both before and during the lockdown.

Still, a number of new opportunities and beneficial outcomes of lockdown were identified by participants, including a positive impact of the mood and wellbeing of their child. Carers described being able to invest time in leisure and play activities, with the ability to build their own routines at home, as well as freedom to deviate from friends’ and teachers’ expectations. Many families even reported reduced anxiety and stress due to having to face less evident stigma and discrimination.

Overall, while the findings highlight that pre-existing issues have been exacerbated by the virus, such as access to services, they also shine a light on the ongoing need for public education, understanding and acceptance of autism.

Dr Georgia Pavlopoulou (UCL Institute of Education), said: "For many families, after some time passed to allow for transitions and new routines to settle in, the changes will have a positive impact on their wellbeing. 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 that, we need to involve autistic people and their families in co-designing and co-delivering services."

Dr Rebecca Wood (University of East London), added: "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 Chris Papadopoulos (University of Bedfordshire) , 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."

The report authors hope that their findings will enable policymakers to further understand how the lockdown has affected autistic people and their families, particularly in relation to the impact on caregiving, quality of life and wellbeing.


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