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My Autism, COVID-19 and moving during a pandemic – James’ story

28 Apr 2021

James, who is supported by Precious Homes in Dudley, shares his story of how the pandemic has affected him.

“At the start of the COVID-19 pandemic, I didn’t realise the impact it was going to have on the country. As it didn’t seem close to me, I struggled to accept that it was real. Before lockdown happened, I was worried that people were buying all of the items that I may need. I felt on my own and that I was having to manage the stress of it, which was confusing. I didn’t understand why some people were doing what they were doing.

Self-isolation

“I stayed in my bungalow for 69 days without leaving.”

I know I could have left for exercise and essential shopping, but people were acting differently. At this point, people weren’t having to wear masks and I felt safer just staying inside away from it all – to me that made sense.

I found myself living with my curtains shut and didn’t leave at all. My advocate had to post my medication through my letterbox, as I didn’t leave the house. The same as everyone else, my world got smaller. I then found my routine became more rigid which I knew would be harder to change in the future because of my Autism.

Moving during lockdown

I moved to the Dudley service in October last year and again all of my routines changed. I was moving at a time where I knew that a second lockdown was imminent. I knew I would get used to a routine based on the current guidelines but then it would all change again.

“I have autism, I look at trying to establish predictability in what is normally an unpredictable world. Add a pandemic into the mix, with frequent changes, that made it even more unpredictable and made me more anxious. It was a lot to process and I felt tired. It felt like I was running off a cliff – running and running and running in the air before falling. But I didn’t fall, I had support.”

There have been a lot of changes with the rules around COVID-19 and what we can and can’t do, I felt that the rules were in place to keep people safe. What I don’t understand and needed support to understand is why some people don’t follow what they are being told to do to keep other people safe. Someone pushed past me the other day on an escalator. They said sorry and said they were late for work but they weren’t wearing a mask and they were too close to me. I don’t understand why people would do that.

With things opening up now, overnight the community went from quieter and more controlled to it seeming like everyone was out. Shops that I’d got used to being quieter were busier. Roads were busier. New places were open and it was a lot to adjust to quickly. I also want to do things I used to enjoy, but I know systems around these will have changed. I will have to adjust to but I know I’ll have support to do this.

Finding the right support

I never felt like I was part of society because of my Autism. I felt this more when I was on my own – especially during COVID-19.

“I’ve realised that, when I’m with my support staff, I’m not apart from society. I feel part of it because I don’t feel alone anymore.”

Being with someone that gets it and understands me makes me feel like I’m safe. It means when I’m out doing things there is always someone there that understands me. It means I worry less about meeting other people and what they may or may not do.

“Getting good support is what I needed. I’m very lucky to have my keyworker. If I didn’t have that during the last 6 months I know I wouldn’t be in a good place now.”

I’ve needed my support, especially during Covid-19. Even though I think I’ve needed more support I don’t feel like I’ve become more dependent. In fact, I feel I’ve become more independent. I feel more relaxed and have more energy than I did this time last year. This is because I feel safe and have company that I trust.”

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