Learning Disabilities & Autism Opinion

Left Stranded: the impact of the first wave of coronavirus

Tim Nicholls, Head of Policy at the National Autistic Society

The coronavirus outbreak has affected everyone. But our recent report found it’s left many autistic children, adults and their families completely stranded. We found that existing inequalities were exposed and deepened, particularly among people with higher support needs.

Together with Ambitious about Autism, Autistica, Scottish Autism, and the Autism Alliance, we are calling on all governments in the UK to create an action plan to protect autistic people and their families from future waves of the pandemic – and to address existing inequalities by urgently investing in support and services, particularly social care.

Background

We were dismayed when autism was not included in the initial reviews into the impact of coronavirus, particularly when we were hearing so many concerning stories about how autistic people and their families were struggling. So we launched our own survey in June and July, as part of a project funded by the Pears Foundation. Thank you to the 4,232 autistic people and families in the UK who responded to our survey and told us about their experiences.

Findings

  • 9 in 10 autistic people worried about their mental health during lockdown; 85% said their anxiety levels got worse
  • Autistic people were 7 times more likely to be chronically lonely than the general population; and 6 times more likely to have low life satisfaction (comparison to ONS figures)
  • 1 in 5 family members responding to the survey had to reduce work due to caring responsibilities

For autistic people, unexpected changes and uncertainty can cause overwhelming anxiety. So you can imagine how hard the disruption of the past few months has been, and continues to be. On top of this, some people also had to deal with the withdrawal of some mental health and social care services, like day services and support groups.

We found that those requiring support all of the time were significantly more affected by lockdown than those requiring only a little support. In particular, they and their families were more likely to be without adequate information and advice on how to manage in lockdown. And many autistic people in residential care went months without seeing their friends and family, due to a lack of guidance.

Marion, a parent in Wales, told us: “Our son normally comes home to us every weekend and all holidays. Throughout this Covid lockdown, he has not been able to come home at all, and has found it very hard to cope with not being able to have his usual routine of coming home. We have been concerned about his mental wellbeing throughout this period. He has come for a few visits in the garden with his carers which has been helpful but he is still very unhappy.”

Coronavirus has also placed an added strain on social care services, which were already under pressure after years of underfunding. Experts have warned that a £3.5 billion funding gap will exist by 2024/2025 if action is not taken now.

In many cases, it fell to families and carers to fill the gaps. The pressure this placed on families was huge and, in some cases, completely intolerable.

Call for action

Left Stranded is our message to the Government that the current inequalities cannot continue. Autistic children and adults must be prioritised and protected from future waves of coronavirus. We need a plan covering social care, health, education, transport and shopping and setting out how governments will avoid using the powers in the Coronavirus Act that limit councils’ duties to support disabled people.

Without the money needed to improve services, autistic children and their families in all four nations will continue to be left stranded.

Find out more: autism.org.uk

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