Parents of autistic children feel let down by the government in lockdown

A survey has found that 86% of parents of autistic children believe that there has been a damaging lack of government support over the last three months

Throughout lockdown, we’ve all had our various challenges to contend with but, wanting to get an idea of how the measures have effected the families of autistic children, researchers from UCL, UEL, and the University of Bedfordshire have highlighted the particular caregiving and wellbeing challenges faced by parents.

Of the 449 survey participants, 86% felt that the needs of autistic people and their families were not properly planned for by officials. While 58% reported that they did still have access to at least one type of specialist support, many expressed concern about being able to properly communicate new habits such as hand washing and social distancing, as well as restrictions on food. They also highlighted how the lack of resources and respite increased fears around becoming ill, prompting worries about how this would affect their children.

On the other hand, the survey also unearthed some positives. Parents expressed a reduction in anxiety and stress as they and their children faced less stigma and discrimination in their everyday lives, which researchers highlight should put a spotlight on the need to work on better understanding and acceptance of autism.

Additionally, the findings also showed that children were less anxious as they did not have to attend school, instead fitting into ‘low-arousal’, ‘low-demand’ routines at home.

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

Parents expressed a reduction in anxiety and stress as they and their children faced less stigma and discrimination

Dr Pavlopoulou goes on to explains how families have enjoyed the newfound freedoms that have come with not succumbing to pressure to conform to pre-COVID-19 expectations. With this in mind, Dr Rebecca Wood – senior lecturer in special education at UEL – believes that the findings of the study should act as an important lesson to education, health, and social service providers.

“There is a lot of learning that can be had from understanding why exactly there have been some positives," Dr Pavlopoulou explains. "In order to achieve this, we need to involve autistic people and their families in co-designing and co-delivering services."

The study is evidence of the need to come together to support those in our society who need it. But beyond that, it’s about time that we started to question the one-size-fits-all approach to many aspects of our culture – be that work, education, and beyond – and lockdown has given us the opportunity to do just that.