“Why is that lady buying so much toilet roll?”
My son and I both stand flabbergasted at the amount of loo paper in the woman’s trolley. Neither of us frequent supermarkets unless it is absolutely necessary so maybe there’s something going on that we’re unfamiliar with.
There is also no pasta left and I need to eat pasta. It is yellowy-white and most of my preferred foods are this colour – particularly when I am stressed. When I feel overwhelmed by life’s events or too much sensory information, my ‘go to’ is comforting yellow/white/beige food. Do not even think about introducing a tomato or anything red, I will not be able to put it in my mouth!
It’s not just the supermarket that is different to normal, the whole town is. The people are missing. I don’t mind this, I avoid towns because of the people anyway. They are too noisy, unpredictable and smelly; but I’ve got used to them and I expect them to be there and they’re not. I feel unsettled.
The village shop is different too. I have perfected my coping skills for negotiating the village shop where I know I will have to meet people, not act too weird and engage in enough eye contact and small talk to look ‘normal’. That’s pretty empty too and I’m told that my elderly neighbours are fearful of going out because of the coronavirus. We chat about community spirit and helping people and I leave my contact details in case I can help anyone out.
Last week society seemed fearful of people, there was talk of a foreign virus and a lot of anger and hatred seemed to be around. This is shifting and I am seeing communities and businesses pull together. I expected this to happen and diligently worked out the maths behind the phenomenon of people changing their attitudes from being hostile towards each other to being more supportive. It was when the coronanvirus was diagnosed in around 20 people per million of population if you’re interested.
You may not be interested and I accept that. For me, and many other autistic people, I find understanding things in a logical and scientific way helps me to process them. There is currently much misinformation or downright lies and totally illogical behaviour as I’d prefer to call it. People are not looking at the facts; they are blowing this out of proportion; they are being unscientific in their responses and they are acting in random and ridiculous ways. My neurotypical friends and colleagues don’t all share my way of processing things. They too feel frustrated at the lack of reliable information, but they are having a more emotional response. They are worried about their aging parents; they are frightened that they will become ill; they are not literally pooing themselves about this – despite the mass hoarding of loo roll – but they metaphorically are.
We are all different. I seek information to help me process things but I recognise my tendency to delve deep and obsess about things and this isn’t always healthy. I strive to balance my quest for accurate information with not becoming overwhelmed and single-mindedly focusing on coronavirus to the detriment of other interests. I am ensuring I pursue other interests and I limit my coronavirus research time. I remind myself that information alone will not solve this.
My son also seeks facts, but as a younger person, lacks my experience and the lessons I’ve frequently learned the hard way about bombarding people with statistics and facts to prove they’re wrong. We can appear insensitive. We’re not. I do feel emotions about this, especially a big one that most people are feeling regardless of neurology. Anxiety. I will also feel other emotions too I’m sure; but probably later when they may appear to be misplaced or delayed – that’s just how I am.
My anxiety is about things that other people may find trivial or unimportant. This can make me appear selfish or unsympathetic to the ‘real issues’. I have placed my anxiety about becoming ill firmly in a category labelled “There is nothing more that I can do than adopt good hygiene and avoid risks”. I can live with this one, statistically speaking I am at low risk, I am likely to recover and I am not a sociable person so will probably not infect many other people. Other people will have a different category for this fear – they will be concerned about their health almost endlessly.
My big fears are around not knowing what is going to happen with all the routines I need to follow. I plan my life to the tiniest degree. I need to eat cornflakes each morning (yellow food – get it?!) or how will I even know it is breakfast time? How can my day even continue if this fundamental building block that my day is founded upon is moved? What happens if someone creates a fake news story about a cornflake shortage and people panic buy them and then I can’t have breakfast and I won’t know that the day has started. I CANNOT have something else instead. It does not compute!
The anchors that I put down to give me stability and predictability in my life may be moved because of this pandemic. I need to find things that will not change and steer towards them instead. Not knowing what will change and what will stay the same is difficult. I feel lost, overwhelmed and unable to navigate. I can appear to be a control freak or rigid and inflexible. I understand why I can appear this way, but actually, if you experienced the world through my unfiltered senses and saw how bright and loud and just plain messy it is, then you will appreciate why I need order and structure and things to be ‘just so’. Changing the rules in society – both written and unwritten is difficult for me to cope with. I have learned how to navigate the world and suddenly my carefully planned and rehearsed ways of operating in it have had to change very quickly and the new rules don’t make sense (and I need things to make sense) and they keep changing everyday and I can’t keep up with things.
I need to regulate myself and take care of myself. We all do during this situation. Much of my self-care looks like other people’s self-care: walks in the woods, listening to music, talking to friends. Some of it looks different: finding repetitive things to do that are familiar and soothing; calming my senses with comforting smells, tactile sensations and noises. My senses are heightened because I am anxious. This can make me look like I am overreacting or shouting or jumpy.
I am glad that society is pulling together more. I am glad that there is information out there on managing your mental health during the Covid-19 pandemic. I am glad that the vulnerable are being recognised as they are always the first to suffer in a society like ours. I want to add an autistic perspective to this situation so that the public understand the unique experiences and challenges we are facing.
Most importantly, we are all people, we have different neurologies, different backgrounds, different social status, race, and genders but we share our world and are experiencing this pandemic together. We will all cope differently and the ways we cope will change day to day. We may or may not show our anxiety in conventional ways. It doesn’t matter, we will share some experiences and some of our experiences will be different.
I have spent my lifetime trying to work out why neurotypical people do the things they do so that I can fit in. I hope that neurotypical people will be able to understand more about how autistic people experience the world and I hope that by sharing how the coronavirus outbreak is affecting me will help us all pull together and appreciate the unique and individual challenges we all face.
This blog was written in March 2020. I have added to it below and today on June 21st I have written a sequel that I hope you enjoy too. Thank you for reading. https://undercoverautism.wordpress.com/2020/06/21/reflecting-on-coping-with-the-anxiety-of-coronavirus-3-months-on/
I have added some resources and links below.
Saturday 11th April.
It is almost 4 weeks since I wrote this blog. I’ve written some others since then, check out the menu – there’s another page with some blogs about working at home, and empathy, and about how I’m finding my skills at coping with changes in routine and unpredictability – that I’ve developed over decades as an autistic person navigating the world have really come in to good use.
This blog you’ve just kindly read, described my fear of running out of breakfast cereal. Within the last week, BBC news has run a story about a community coming to the aid of a young boy whose parents were struggling to purchase his preferred brand of food. I didn’t run out of cereal but I have been unwell. I had to visit the Covid 19 treatment centre in the county town hospital. It isn’t like a typical hospital visit – please check out the tips below so you can prepare.
I have also been receiving support from friends and acquaintances online and hopefully giving support too. Vulnerable people frequently experience inequalities in health treatment and experience greater distress. This blog, and my other blog (sharing my passion for nature) do not make money for me and I want to keep them advertising free. Autism Wellbeing are providing some fantastic support to people – much of it unpaid. We have 2 private Facebook peer support groups (one for parents and carers and one for autistic adults. Many people are in both). Please support us to help us continue providing online and telephone support and reassurance to autistic people and families.
This was my first ever autism blog, I hope you liked it. I’ve continued to blog, please check out my other posts via the link or menu. Autism wellbeing have produced lots of tips and ideas for support during lockdown that are on our Facebook page. They are produced by a team of autistic and non-autistic professionals and parents.