Life has been turned totally upside down in the last few months. It’s become cliché to talk about “unprecedented” times, but they really are. Every day, headlines are filled with scary news about a new aspect of coronavirus that has been discovered, or often confusing changes to the rules.
Staff in health and social care services are doing their absolute best to keep us all healthy and we all know the debt we owe them.
But as the restrictions to our lives continue, it’s hard to deny that it is, in many ways, getting harder to stay positive. After months, we still can’t do many of the things that give our lives meaning. And for many autistic people, this continued detachment from the people and things that they love and help them has been unbelievably hard.
I’ve never really lived full-time with Andrew, my older autistic brother. He went to a residential school because that was what he needed and now he lives in residential care quite far from me. But during lockdown, that enforced distance honestly felt infinite. It was much harder for my brother and parents, who couldn’t have their usual monthly visits. It’s been the longest he’s ever gone without seeing us, with no real preparation or planning – because pandemics don’t allow for that – and our planned holiday for his 40th birthday was cancelled.
Going to the library once a week is the one thing that my brother does on his own. It’s written in his Deprivation of Liberty assessment because it’s important. But the library’s shut.
Like many autistic people, my brother gets support from some amazing care workers. They’ve helped him maintain most of his routine on the farm that he lives and works on. Although we can’t see him, we can be proud of the part he’s playing in keeping food on people’s tables and we know he’s well supported.
Other autistic people have found that they have more time to dedicate to the things they love doing, whether that’s football, puzzles, writing, music, drawing or lots of other things. For many, this time has been invaluable in helping them cope with the way the world around them is changing.
Autistic people must not be left behind
But as we’ve started easing the lockdown, new anxieties have crept in. What journeys are allowed? Do I have to go back to work? What if someone comes closer than two metres? These haven’t been helped by unclear messages about the rule changes and often conflicting advice. Clarity and consistency are vital when you’re communicating with autistic people.
When you put that together with horrible stories about Do Not Resuscitate Orders, NICE guidance conflating disability with frailty, and disabled people being ruled out of the scope of Public Health England’s review into health outcomes, it’s easy to see why many disabled people, including autistic people, feel left out and forgotten.
At the National Autistic Society, it’s our job to make sure that doesn’t happen. And we know that health and care staff, including those in our own services, are on the front line doing the same.
Staff and autistic people need a system around them that works. The social care system has been in crisis for years; underfunded to breaking point. Coronavirus has laid that bare, for all to see. Some Government money has gone in to prop up social care, but unless the longer-term funding crisis is solved, autistic people will continue to miss out.
Find out more: autism.org.uk