On 6 March I sent out my usual Friday email. It was all about Stay Up Late, the brilliant organisation that challenges the notion that people with learning disabilities and autism should go home at 9.30pm, because that’s when their carer’s shift often ends. Instead, Stay up Late encourage people to actually start their evening at 9.30pm by doing things like going to the pub or seeing bands. And so the newsletter was all about having the freedom to go out and have a good time.

And then that all stopped. The country went into lockdown. And that’s really devastating for the people who have often, in the past, had no chance to go out but that had now been given this opportunity to do so.

My newsletter is a quirky take on news in the learning disability and autism world. But that Friday, 6 March, was the ‘old usual’. The ‘new usual’, from Friday 13 March onwards, saw me starting to send out information about COVID-19 in relation to learning disability and autism.

Welcome to my world

People with learning disabilities and autism have had to put up with an infringement on their personal freedom, as has everyone. But has it been worse for people with learning disabilities and autism? I’d say the evidence – from my own family and from my newsletters – is that it has been a massive challenge and continues to be. But then we’re a group of people that is quite used to the idea of social isolation. With that in mind, Canadian Sarah Kurchak says that social distancing, anxiety and terror are very familiar to her.

But I’ve heard of families living in small flats who are cooped up with young adults with autism who are completely thrown by the change in routine; and sleep deprivation and chaos kicked in weeks ago. There’s always a smoking gun that’s faster than yours. Everyone’s got their issues during the lockdown I suppose, but it’s really difficult for some to cope when they’re always close to not coping in normal times.

There was a moment of clarity in the middle of April when the Guardian reported that lockdown rules were being amended for people with autism and learning disabilities, like my son Stanley has. The guidance suggested that some might need specific exercise in an open space two or three times each day, in line with a care plan. This signalled some understanding of the particular challenges that people with autism and learning disabilities face. And it’s most welcome; but it doesn’t solve fundamental problems such as “What are we going to do all day?” It makes you realise how much you rely on school and activities for a young man like my Stanley.

Everyday heroes

Meanwhile, there are a bunch of people reaching out and helping people with learning disabilities and autism; whether it’s the Pallant Art Gallery in Chichester sending out artist sketch books and pencils; or a donation from an anonymous benefactor in North London so that now more people have a smart phone, tablet or laptop to help them work through the current crisis. And people with learning disabilities are supporting others, like this fantastic woman with Down’s Syndrome in Wales (with several costume changes); or this marathon runner who has autism.

Back to our friends at the Stay up late campaign. Let’s hope that very soon they’ll be out there and staying up late – and socialising in a way that hasn’t been possible in the past, or indeed now under lockdown. The next Tweet that the organisation does, where they’re celebrating a night out, will be a joy to behold. In the meantime we’re’ all just trying to cope with the ‘new usual’.

Steve is the Dad of Stanley, an 18 year old with Down’s Syndrome. Steve is an advocate for the rights of people with learning disabilities and autism. He’s written a blog and a book, he’s made many media appearances and he’s produced a number of podcasts about Down’s Syndrome. He also sends out a quirky newsletter on Fridays.

Follow Steve on Twitter @Downs_Dad_UK

Check out his blog http://downswiththekids.blogspot.com/ and his list of COVID-19 support for learning disability and autism

Photo of Steve and his son Stanley