The coronavirus pandemic has had a disproportionate and devastating impact on the mental health, wellbeing and education prospects of hundreds of thousands of autistic people and their families, according to a new National Autistic Society report. Many autistic children, adults and their families have been left stranded, often without the support or information they need to get by.
4,232 autistic people and families in the UK were surveyed during June and July and their responses show that coronavirus and the lockdown deepened well established existing inequalities. The disruption, uncertainty and pace of change triggered huge levels of anxiety and for some was made worse by the withdrawal of support from social care, education and mental health services.
The Government’s Coronavirus Act temporarily weakened many of the duties on councils to provide support. But even before these powers were created, or in areas where they never came into force, the charity heard of people losing their mental health, education and social care support services – sometimes with little notice. On top of this, many autistic people reported having huge difficulties shopping for food. The new rules about going into shops alone (without support), new layouts and the rules on masks left many feeling overwhelmed and, in some cases, like they couldn’t go out at all.
While these concerns led to anxiety for most autistic people, the impact was felt most strongly by those with higher support needs, autistic women and non-binary people. This research was led by the National Autistic Society, as part of a project funded by the Pears Foundation, with a number of other autism charities supporting: Ambitious about Autism, Autistica, Scottish Autism, and the Autism Alliance, which is a coalition of 17 autism charities.
Together, the charities are calling on all four governments in the UK to create an action plan to protect the 700,000 autistic people in the country, and their three million family members and carers, from possible future waves of the virus. This would cover social care, health, education, transport and shopping and set out how the governments will avoid using the powers in the Coronavirus Act that limit councils’ duties to support disabled people.
Ahead of the Spending Review, which is expected in the autumn, the charities are calling on the UK Government to commit to including autistic people and their families in their levelling up agenda. This means making sure every part of the country has the money it needs to support autistic people through the coronavirus pandemic and end the inequality and lack of support and understanding that has persisted for years.
Less than 12 months ago, a report by MPs and peers found that two in three autistic adults in England don’t get the support they need. This could mean that even before coronavirus, up to 327,000 autistic adults weren’t getting help to do things other people take for granted, like socialising, managing money or getting out and about.
Shielding stalemate
Since March, Sylvia White has been shielding at home in Dumfries and Galloway in Scotland with her 20-year-old son Luca. He is autistic, has learning disabilities and requires a lot of support. Yet Sylvia has seen this support drop away during lockdown and has been desperately been trying to fill the gaps. She felt like she couldn’t go on, like there was no-one to run to.
Sylvia, who is 53, said: “I’ve been shielding with Luca since March, we were practically house bound with no support. I’m on my own and he needs 24-hour care. In normal times he would attend a day service five days a week and go for respite 36 overnights a year with a council run service. But both these services have been suspended due to the pandemic and I’ve been told there won’t be respite for the foreseeable future.”
“I understand why the day service isn’t running as it’s not possible to socially distance. But his respite care is given in a self-contained bungalow with one member of staff and there’s no sharing of facilities. I feel we’ve been abandoned.”
“The last four months have taken a toll on both of us – I’m on my own since my mum died just before lockdown – and my mental health has really suffered. I need a rest – Luca doesn’t sleep well and we’re up most mornings between 4 and 5 am. Earlier this month I really didn’t know how I could continue. I couldn’t see a way out.”
“Fortunately, we have now had some good news. Luca now has two carers coming to the house and we’ve now got extra funding for them to support him overnight. It’s not ideal having someone in my house and I have to leave when they are here otherwise it wouldn’t work for Luca, but it has made things a lot better. I know there are many other autistic people and families struggling out there and hope sharing our story will mean we’re not forgotten.”
“Autistic people and their families have been struggling to get the care, support and understanding they need for years and things have been made even harder by coronavirus,” said Caroline Stevens, Chief Executive of the National Autistic Society. “They’ve been left completed stranded.”
“If you’re autistic, small changes and unexpected events can trigger intense anxiety. So the disruption and pace of change during the coronavirus outbreak has been incredibly hard. On top of this, support from some public services disappeared overnight, leading to impossible pressures on families and many feeling abandoned.”
“The impact is stark, with 9 in 10 autistic people telling us they’ve been worried about their mental health during lockdown and 85% saying their anxiety has increased. We’re worried many could be at serious risk of crisis.”
“The inequalities that autistic people and their families face aren’t new. We’ve been highlighting them for years. But coronavirus has laid them bare and deepened them.”
“In case of another wave or further local or national lockdowns, all governments in the UK must take urgent action to make sure the needs of autistic people and their families are better met next time. And as we rebuild our society, governments need to look beyond the immediate effects of coronavirus too 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.”
Charlene Tait, Deputy CEO of Scottish Autism, said: “We know that the Covid-19 lockdown has had a major impact on the mental health and wellbeing of many autistic people and their families in Scotland. As we look forward, there is an opportunity now to ensure that the awful impact of Covid-19 becomes a catalyst to change how autistic people are supported.”
“There is an evident ‘accountability gap’ between the services and support that should be available to autistic people and their families and what is available in reality. It’s not enough to tinker at the edges – transformation and systemic change are required to ensure that each and every autistic person has access to the vital services and support that they need now and in the future.”
Dr James Cusack, CEO at Autistica, the UK’s autism research charity, said: “Too many autistic people are excluded from society, develop avoidable mental health problems, and tragically face an early death.”
“But we can deliver better outcomes for autistic people today by implementing services based on evidence. And we can deliver change tomorrow by developing solutions to big problems through innovative research.”
“We need the government to publish an autism strategy which includes research. If autistic people, families, government and charities, work together we can harness everyone’s strengths to ensure inequalities are addressed and autistic people’s rights are guaranteed.”
Jolanta Lasota, Chief Executive of Ambitious about Autism, said: “The Coronavirus pandemic has had a devastating impact on autistic children and young people. We’ve seen first-hand the increase in preventable mental health issues, autistic pupils being denied an education, and vital support disappearing overnight.
“The Government must address the issues facing this extremely vulnerable group, by improving the special education needs and disabilities system, increasing understanding and ensuring the Spending Review provides them with the right support.”
“If we don’t act now, inequalities will become further entrenched and any second wave will be insurmountable for autistic young people and their families.”
Mary Simpson, Chief Executive Officer of Spectrum and Chair of the Autism Alliance, said: “The voices of autistic people in this report are compelling as they talk about their isolation and services being withdrawn.”
“We must listen and act to ensure no further degradation of services occur and services that have been withdrawn are reinstated as the emotional cost is simply too much to bear.”
Stephen Buckley, Head of Information at Mind, said: “This research shows that autistic people have been disproportionately affected by the pandemic.”
“We’re particularly concerned by the high rates of anxiety reported by people on the autism spectrum. Coronavirus has widened existing inequalities for both people with autism and mental health problems, therefore the Government must make sure their needs are properly addressed and prioritised in their recovery plans.”
Note on comparative stats
*37% of autistic people responding to the survey said they ‘often’ or ‘always’ felt lonely. This compares to 5% of the general public when asked the same question (Source: ONS Opinion and Lifestyle Survey, 3 April-3 May (Coronavirus and loneliness analysis 2020)).
**51% of autistic people responding to the survey gave a score of 0-4 when asked how satisfied they were with their life. 0 is not satisfied at all and 10 is completely satisfied. This compares to 8% of the general public giving a score of 0-4 (Source: ONS, Personal and economic well-being in Great Britain: June 2020).
Read the whole report on autism.org.uk
