Left stranded: the impact of coronavirus on autistic people and families in the UK

with Jane Harris, Director of External Affairs at the National Autistic Society

Coronavirus has had a negative impact on every section of society, but none more than the disabled and vulnerable. We've reported our own survey about the impact on education of children and young people with SEND, and last week, we reported research from Amy Skipp and the Nuffield Foundation, that special school heads believe 14% of their children won't be back in school this term. We're also hearing worrying reports of medically complex children being told they can't return - something that is unlawful. We'll be reporting on this later this week.

Today, we hear from Jane Harris, Director of External Affairs at the National Autistic Society, about the pandemic has amplified and further exposed inequalities experienced by autistic children and adults - and the action they and four other large autism charities are asking you to take to help.

How coronavirus has left autistic people and their families stranded by Jane Harris, National Autistic Society

It seems a cliché to say that coronavirus threw people’s lives into disarray. But this is the reality for many autistic children, adults and their families. Everything changed, in some cases overnight. Schools shut, families couldn’t see each other and new rules from government were coming thick and fast. Faced with wave after wave of disruption and change, many autistic people and families felt completed stranded. 

Our new report, Left Stranded*, explores the often devastating impact of the pandemic, finding that existing entrenched inequalities have been exposed and deepened. Together with four other leading charities, we are calling on all governments in the UK to create an action plan to protect autistic people and their families from any future waves of the pandemic – and to address existing inequalities by investing in support and services. 

Sign our open letter

Left Stranded

Please sign our open letter to the Chancellor, Rishi Sunak MP, calling on him to invest in autistic people’s futures, ahead of the Spending Review this autumn.

Mental health and learning worries

At the National Autistic Society, we were dismayed at the failure to include autism in official 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. Your experiences form the basis of our report, which is supported by Ambitious about Autism, Autistica, Scottish Autism, and the Autism Alliance. The findings were shocking:

  • Nine in 10 autistic people worried about their mental health during lockdown; 85% said their anxiety levels got worse
  • Autistic people were seven times more likely to be chronically lonely than the general population, and six times more likely to have low life satisfaction (comparisons using ONS data)
  • One in five family members responding to the survey had to reduce work due to caring responsibilities
  • Seven in 10 parents said their child had difficulty understanding or completing schoolwork and around half said their child’s academic progress was suffering
  • 68% said their autistic child was anxious at the loss of routine and 65% couldn’t do online work
  • Two in five parents or carers said they did not feel they could adequately support their child in their educational needs.

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, particularly the closure of schools. While the Government said that children with EHC plans would be able to go to school, this didn’t always happen in practice. We heard from parents that “risk assessments” and concerns about the ability to social distance prevented their child’s return to school. Other schools failed to put in place the individual plans that autistic children need to cope with such a massive change to their routines.

Jane Harris
Jane Harris

Intolerable stresses

In many cases, it fell to parents to try to fill the gaps: to home school or support their child’s education, often while juggling work and other commitments. The pressure this placed on families was huge and, in some cases, intolerable. 

One parent from England told us:

“The last ten weeks have been very up and down for us. Initially, our autistic son coped with the sudden change in life very well, when his local school was closed. He seemed to enjoy having everyone at home (especially as it meant no school, commuting or unexpected changes to the day). However, as the weeks have gone on he has become more lethargic, agitated and has refused to participate in any online learning. He is not able to notice or understand his own emotions, so keeping in touch with friends has been almost impossible.”

When asked how their children’s education could be improved, some family members suggested breaking work down into more manageable amounts and providing better links to other students for social interaction. But for around half of families, it’s also been harder to contact school staff, who could provide vital help and advice.

Governments need to work together

It’s imperative that all governments in the UK, councils and schools work together to support autistic children with this difficult transition. Just last week, the Government minister with responsibility for SEND in England, Vicky Ford MP, sent a letter to all schools and education leaders to underline the importance of this.

Read the letter itself here

Opportunities for change

There are three important moments coming up, which could shape the next decade of education for autistic children:

  1. The Government is expected to publish its new autism strategy for England this year. For the first time, and following years of campaigning, this will include autistic children, alongside adults. This must set out how the Government plans to improve understanding of autism in all schools and to make sure there is enough of the right kind of support in every part of the country. 
  2. Around the same time, the Government’s SEND Review for England is expected. This must look at the particular barriers autistic children face. Autistic pupils in England are twice as likely to be excluded from school for a fixed period as pupils with no special educational needs. And autism is the most common type of need in SEND appeals by a considerable margin. This must be addressed. 
  3. The Government’s Spending Review is expected in the autumn and will set out its plan for public spending across the UK for the next few years. Without the money needed to improve services, autistic children and their families in all four nations will continue to be stranded.

Left Stranded is a message to the Government – to the Prime Minister and the Chancellor – that the current inequalities cannot continue. Autistic children and adults must be prioritised and protected from future waves of coronavirus. No autistic children should be shut out of school while their friends all go back. And no family should be denied the additional support they rely on. There needs to be a plan.

And as we rebuild our society, all governments in the UK need to look beyond the immediate effects of coronavirus and invest in the understanding, support and services autistic people need. Only then will we create a society that works for autistic people and their families.

Get involved

If you want to add your voice to ours, please sign our letter to the Chancellor calling for investment in autistic people’s futures.

Further information

  • *Read the full Left Stranded report on the National Autistic Society’s website from Monday (7 September) morning: autism.org.uk (we'll update the link when it's published)
  • If you’re a teacher or work at a school and looking for information and guidance, the Autism Education Trust have lots of resources. 
  • If you are worried about your child going back to school, or have questions about what’s happening, contact our Education Rights Service. They provide impartial and confidential information and support to families on children’s education rights and entitlements.

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Tania Tirraoro

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