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.”

Reaction

Caroline Stevens, Chief Executive of the National Autistic Society, said: “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. 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.”

Case study #2
 
Jonathan Stacey is 45 and lives and works in Knowsley, just outside Liverpool. He was diagnosed as autistic about 18 months ago and has found shopping during the coronavirus pandemic incredibly hard, particularly since the rules on wearing masks in shops 
were introduced. He's worried about how few people seem to know there are exemptions.  
  
Jonathan said: "When the rules on masks were announced, I was genuinely worried I wouldn't be able to go anywhere at all.  
 
"I cannot cover my face as it triggers me severely, it makes me shake and sweat immediately. I know there are exemptions but I can’t even begin to think about trying to justify myself to staff, let alone the stares from others.  
 
"I don’t think businesses understand the implications for people like me. I’m not physically disabled in an obvious way, I’m able to hold (albeit strained) conversation when prompted by the other person, at least most of the time. There are many stores that had incorrect signage that stated that face coverings are mandatory for all in line with ‘Government guidance’. This makes me even more anxious and I try and avoid those places. I’ve been stopped a number of times and asked to put on a mask and each time I’ve had to re-iterate I am exempt, every time increasing anxiety further. 
 
“On a scale of 1-10 where 1 is happy to go out and 10 is won’t be going anywhere I now generally sit around 8 instead of 3 or 4. I recently experienced the first instance of someone pointing an IR thermometer at my head. No warning and held like a gun it started a minor panic attack. Far too scary.  
 
“All those years of learning social norms has been pushed to one side by this pandemic but with patience of those around me I am learning to adjust. Without my wife and daughter I don’t know where I would be or how I would manage.
 
“This is an incredibly difficult time and I cannot wait for things to return to a more ‘normal’ time.” 

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).

Further information

• Read the full report, Left Stranded, on our website. 
• Please sign our letter to the Chancellor calling for investment in autistic people’s futures.
•  For information, guidance and tips about coronavirus, visit our Coronavirus Hub.
•  For confidential support and advice, visit the Help and Support section of our website.