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86% of parents of autistic children want more support

A survey of almost 450 UK parents and carers of autistic children finds that the majority felt a lack of government support during lockdown.

Dr Chris Papadopoulos from the University of Bedfordshire’s Institute for Health Research, Dr Georgia Pavlopoulou of UCL’s Institute of Education and Dr Rebecca Wood from UEL have today published findings, results and recommendations derived from a survey they undertook of 449 UK-based parents and family carers of autistic children and young people (CYP).

The study was designed to help policy-makers further understand how the Covid19 lockdown has effected autistic people (and their families) and to provide specific recommendations for future policy makers.

When it came to finding the care and support they needed, many of the survey participants explained that even prior to the COVID-19 outbreak, they had struggled to gain access to the required public services. Once the UK went into lockdown, just 58% of participants said they were able to maintain access to at least one type of specialist support.

In addition to the pre-covid challenges faced by parents and carers of autistic children, the survey also uncovered a wide range of new issues being experienced, with most of those having a direct correlation to the pandemic.  In fact, 70% of survey participants stated that their daily routines had significantly changed since the pandemic began.

Many parents and carers expressed difficulty in communicating new behaviours, such as new hand washing techniques and communicating rules around social distancing, and struggled to shop for key foods that their children relied upon for regulation and wellbeing reasons.  These additional stressors, on top of their already challenging situation, had led to an increase in anxiety problems, sleep difficulties and even alcohol consumption.

One positive finding of the survey was that many participants reported their children had benefitted from reduced anxieties due to them not having to attend school and that, instead, low arousal and low demand routines at home had an overall positive impact on their CYP’s wellbeing.

Overall, the results from this collaborative research project have highlighted that despite the relaxed legislation on lockdown measures for autistic people – brought into effect in mid-April 2020 – 86% of participants believe the needs of autistic people and their families have not been adequately planned for or addressed by officials during the pandemic.

Dr Chris Papadopoulos explains:

“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 have dedicated autism leads who can help coordinate and support such processes for the wider autistic community.”

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

The full report, including these key learnings and expert recommendations for future planning, can be read online via the UCL Discovery website: https://discovery.ucl.ac.uk/id/eprint/10101297/

Photo by Kelli McClintock on Unsplash

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