Learning Disabilities & Autism Opinion

The crisis is bringing out the best in people

Caroline Stevens, Chief Executive of the National Autistic Society

The lockdown has been incredibly difficult for everyone, especially the care workers on the frontline of the coronavirus pandemic. Over the last few weeks, I’ve spoken to many who are anxious and concerned about the people they support, as well as their own health and wellbeing.

In spite of unprecedented challenges, they are doing their absolute best to care for thousands of autistic people. They are going about their vital work day-in-day out, putting the people they look after first. It’s truly inspiring.

Maintaining routine

Small changes or unexpected events can trigger intense anxiety for lots of autistic people. An empty supermarket shelf, a closed café or a cancelled appointment can feel catastrophic. Autistic people often need extra time to process information and find communicating and interacting with other people particularly hard when they’re anxious or overwhelmed. So, the drastic lifestyle changes brought by the lockdown have been exceptionally difficult.

This has presented care workers with huge challenges too, particularly trying maintain structure, routine and relationships. But they’ve really stepped up to the task and I’m hearing wonderful stories every day of colleagues coming up with creative ways to ensure the people they support can still do the things that matter to them, like setting up a home cinema, running virtual art sessions, and even hosting a bar and funfair in the garden

I’ve been particularly inspired by our team at the Glamorgan House Autism Centre in Neath, Wales, who went the extra mile. They made their own replica McDonald’s drive-thru to help the people they support to cope with the closure of local restaurants and takeaways.
They even made their own handmade uniforms and got some packaging from McDonald’s to create an authentic experience. It was a big success, and they’re now running a different pop-up each week. They’ve already had an ice-cream parlour, pick ’n mix sweet stand, and a hotdog stand. I know from my own autistic son’s experiences just how much of a difference this will have made to the people at Glamorgan House.

It’s not only care workers in our own services of course. Care workers across the sector are going above and beyond. One charity, Autism Wessex, knew one of the people they support was feeling really anxious because his daily routine, which involved going to his local pub everyday for a Coca-Cola and crisps, was totally disrupted. To help him manage during lockdown, they made their own pub in the back garden.

Unprecedented pressures

These stories of everyday heroes are all the more remarkable when you consider the huge pressures facing the social care system. Even before the coronavirus outbreak, councils and providers were struggling to support everyone who needed social care, because of years of underfunding. And now there are even more difficulties and higher costs, because care providers have to find more staff to cover people who are ill or self-isolating, and need to buy protective equipment.

The Government has increased funding for councils since the outbreak, and that’s desperately needed. But this wasn’t ring fenced for social care. And as I write this at the start of May, we’re hearing that it’s often not reaching care providers and the autistic people who really need support. The Government must make sure there’s enough funding to keep the social care system going, as well as keep our care workers and the people they support safe.

Over the coming weeks and months, the Government must continue to monitor how the social care system is coping and give councils whatever it takes to keep it going. And, after the pandemic is over, we must learn from what’s happened. We must demand a fully-funded social care system that truly rewards care workers’ heroic efforts and guarantees autistic people the support they need to live full lives.

Find out more: autism.org.uk/coronavirus



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