The Retreat’s Expert by Experience Rose Anne Evans, explains how, as an autistic person, it’s a real challenge at the moment to keep up with all the changes and guidelines.
Growing up I liked, or in-fact relied on, rules. They helped me to understand how the world worked. ‘Unwritten rules’, however, would often confuse me. They just didn’t exist in my world. But I learnt from other people, copying their behaviour and reactions to certain situations. I also struggled with uncertainty, and relied on routine and structure.
For a long time, I didn’t understand why others didn’t seem to experience the world quite as I did. Of course, many people like routine and structure, but the difference was, I was unable to cope without it. At the age of 19, when I was diagnosed with autism, things started to make a lot more sense.
What my diagnosis gave me was the ability to be more understanding and therefore accepting of myself. Now, I recognise that nobody should feel the need to wait for a diagnosis before they can accept themselves, but that’s just how I felt at the time. Since my diagnosis, I have learnt what autism means for me, and this has helped me to put things in place to allow me to cope in a world that doesn’t always entirely feel autism-friendly.
So how am I managing in the current situation?
Well, I’m currently trying to keep up with the ever-changing rules and guidelines, and that has been a challenge. I’ve decided it’s easier and probably better for both me and others if I stay inside, so I have started to make a new routine for myself. I’ve called it the ‘stay at home’ routine.
I still get up, get dressed, and go downstairs for breakfast. At 8am, I lead video morning prayer with people from church, and then by 9am I’m sat at the kitchen table ready to start work. I’m not saying everything is normal, because it isn’t. It can be hard to motivate myself to work when I am so used to my house being my place to retreat and relax, and the nature of my work has changed quite a bit. But I’m slowly getting used to this new routine, and am trying, as much as possible, to structure my time. I write a plan for the day so that I know what tasks I need to complete. I make sure to still take my lunch break and get away from my laptop. And I still stay connected with my colleagues. After work, I try to do something to relax like watch a film with my housemates, or write a song on my guitar. My weekends look different to how they were too. But I have appreciated being less busy, and just having time to ‘be’. I am also grateful that we now have an online church service on a Sunday that I can watch, and that helps me immensely.
I haven’t actually been into the supermarket since they have changed, and so the unfamiliarity of it is quite daunting for me. I have lots of questions. How does it work? What are the rules? And are there unwritten rules that I am not aware of? Plus there’s the added uncertainty when I get there of whether what I need will be on the shelves. The truth is though, this is an uncertain time for all of us, and many will have similar worries. I can’t be certain that anything I need will be there, and I am coming to accept that. One thing I have come to realise over the years is that you can’t always control a situation, nor can you change it.
But you can look for ways to cope, and, if necessary, look for alternatives. I know that actually right now, the supermarket feels too overwhelming for me. I accept that, so the next stage is to look for a solution. Home-delivery is currently not available, but my housemates have been going shopping each week. I don’t like asking for help, in fact, I find it quite difficult – I prefer being the giver. But the current situation has forced me to ask for support, and has allowed me to not just give, but to also receive.
It’s quite overwhelming how many people are willing to help. I think it’s quite easy in a situation like this to overlook people’s kindness and generosity. What this situation has done is help me to appreciate the small things. The sunny weather last week, or the time to sit and chat to my housemates. In the grand scheme of things, I’m ok. In fact, I’m more than ok, I’m doing well.
Yes, I have had to adapt, but I don’t know one person who hasn’t. I appreciate that not everyone will be feeling the same way. For some people, this situation is just way too overwhelming. You may feel like you have gone backwards. But that doesn’t mean you can’t ever go forwards again. Sometimes it’s best to take every day as it comes, and to think about what you need to get you through the day. If you can plan ahead, that may also help, but don’t worry if that also feels like too much. We’re all doing the best we can and, as I always say, we should try and steer clear of comparing ourselves to others. We our individuals with different needs and experiences, and that means that the way we cope with things is unique to us.
However, you don’t have to struggle alone. There is lots of support out there if you need it and, as I am slowly learning, it is ok to ask! If you are struggling, please do reach out for support – we all need it from time to time, and maybe this is your time.