This is a guest commentary. The views and opinions of the author may not always represent those of the Centre for Care.
Transitioning into lockdown and getting stuck there
When the first Covid-19 lockdown started everything stopped. I missed the car shows I used to go to around the country, and the Japanese market every Sunday afternoon. All the interesting things stopped.
I had a letter from the doctor saying I could still go out and I took that letter with me when I went out for walks. I liked some parts of lockdown. It was so quiet everywhere and I really enjoyed that. But you couldn’t go to people’s houses. And you couldn’t do any interesting things because they all went online. It got boring doing all that for so long. It was fun for the first month and then it was boring.
I’ve got ASD – autism spectrum disorder. The day before lockdown my PA posted a letter through my door and quit. I don’t know why. So I had no PA through lockdown. During lockdown no one from the council phoned to ask me if I was ok, to see if I had food, mum had to sort everything out. The only time I heard from them was a letter saying you’re not spending your direct payment money so we’re going to take it away from you.
I haven’t had good experience with PAs. The only person who applied worked in a care home and I wasn’t happy with that. We don’t use people from agencies because there are so many rules about what you can and can’t do and that’s not choice and control. And if I do employ a PA I have to pay some of the cost from my own money and I don’t have much money to start with. It’s just my mum and dad looking after me now. They go out with me or I go out on my own.
Half-way through the lockdowns it got really difficult, especially for my brother. He’s got an autism spectrum disorder too. He has a support worker though which I don’t have. My grandma passed away during Covid and I couldn’t see her. Losing her affected my brother really badly.
Then we all got Covid towards the end of 2020. My brother got it really bad. And he didn’t get a letter saying he was high risk until after he got it. Mine wasn’t too bad but I’m still not 100 per cent, I still get breathless and that makes it hard to exercise.
I’ve got a new GP and I don’t want to go back to the beginning of having to tell them my story again. Plus people expect you to know what you need because you’ve had ASD for so long. But it gets different as you get older. The expectations of you are so much more.
Life after lockdowns
The lockdowns have finished but I’m still staying in and going on the computer a lot. I’m bored and finding it hard to get back into things because all the groups have gone online. I want to do something in person, especially when I’m learning something.
People seem different now, after the last couple of years. Everyone’s a bit more doing their own thing. People are used to being stuck inside and doing things online. Everything’s gone weird. And I feel I’ve gone backwards to how I was a few years ago when I never used to go out. My sleep is terrible. The panic attacks have come back. The lockdowns have set me back three years.