So we didn’t run out of toilet paper after all then!
I wrote my very first blog about autism 14 weeks ago in response to the approaching restrictions that would be needed because of Covid-19. It was quickly picked up by a variety of autism organisations and groups, and I watched what was a speedily written and personal reflection on the situation, quickly become a recommended read: https://undercoverautism.wordpress.com/coping-with-the-anxiety-of-coronavirus/
I recognised how my autism could be an advantage for coping with the reduced socialising, the working from home, and for coping with high levels of daily anxiety and uncertainty – all things I am skilled in managing everyday. I also recognised that the changes to my lifestyle as a result of coronavirus might feel scary, the new rules may be difficult to interpret and understand, and that everything I had learned off by heart in order to cope with the “normal” world may have to be relearned in order to cope with the pandemic situation.
It’s now midsummer and I have continued writing blogs and have achieved on average one a week throughout this time period – I have had a productive lockdown in terms of written output and I am humbled, shocked and delighted at how widely read my writing is. Not just my autism and wildlife blogs, but my local newspaper column, some recent memories I’ve shared for a wildlife trust project, and my employed work too. This past week I have seen an article published in the British Institute of Learning Disabilities Good Autism Practice Journal and I’ve helped produce a support pack for families affected by autism in my local area in West Wales. This is beginning to sound like a job application or a CV – it’s not meant to be! It demonstrates how useful it is to have a hobby and an outlet for expressing myself. I’ll come back to this later in my blog.
Like everyone else, we are beginning to consider what a “new normal” may look like and I need to prepare for that too.
Back in March I thought about how important it would be for me and my family to develop a routine that suited us, and replaced our previous routines. I’ve described why this is important for us and how we did it in some of my other blogs, but I’ll describe it here as briefly as possible: My world feels quite chaotic because my brain processes information (including sensory information) in an unfiltered and non-discriminatory way. This means that I need to impose my own sense of order, predictability, and my own routines and ways of categorising, understanding and coping with this information. If I don’t, I become completely overloaded and overwhelmed and unable to function.
At the start of lockdown I saw lots of posts on Facebook about how people were going to learn new skills, do up their homes and gardens, teach their children, and take up hobbies. I loved that it was ok to have hobbies again! When I was growing up it was far more normal to have hobbies and it was even ok to have slightly unusual, obscure or nerdy interests. There is a great deal of satisfaction that can be gained from having a hobby that distracts you, brings you respite from day to day life and enables you to immerse yourself in it to the exclusion of everything else. You don’t even need to be good at it to enjoy it! Many autistic people find their interests can be all-consuming and whilst this may bring them immense personal pleasure, it can appear single-minded, obsessive or even boring to other people. Tough, I say. It’s just how we do things.
However…. I am aware that as well having the valuable skill of being able to hyper focus on things that interest me, I can pursue something single-mindedly in pursuit of truth or deeper understanding, to the exclusion of other people’s needs or my own wellbeing. For me, this is particularly likely to happen at times of stress. The chaotic world I normally live in has suddenly become even more chaotic as a result of Covid19, and I can feel my need for logic, order, understanding and, “for something to just be the fucking same as it was last week!!!” has increased massively. I expected this and set myself 3 rules at the start of lockdown. Here they are:
- I will brush my hair every day even if I don’t want to and even if I’m not going anywhere. (I dislike brushing my hair because of the way it feels. I often rub the back of my head on things without noticing and have had a lifelong tendency to develop a big knotted mass of hair on the back of my head. This makes ‘horrible hairbrushing’ even horrible-er!)
- I will have walks every day. (This is essential for regulating me and for maintaining a routine)
- I will keep my interests broad not deep during the Covid19 pandemic. I will not pursue anything related to politics, health or inequality as an interest at the moment. (The last thing I need to do at times of stress is go off on one trying to change the world when I quite clearly can’t)
That’s it. Not particularly difficult rules to follow and I have been quite successful. The only rule I broke was the one about walking. Unfortunately I was very unwell and unable to get out of bed for a week. I may or may not have had coronavirus but I needed to visit the hospital and was discharged with a letter stating I had possible Covid19. This was in March and tests were only being offered to inpatients. I was treated in the Covid treatment centre which was a big tent in the local hospital grounds. It was the worse sensory experience I have had in a very long time. It was bright, white, incredibly noisy with fans and bleeping machines, and no one acted or looked like a doctor or nurse normally does. I also felt quite unwell and thought I might die a couple of times. So in true “me” style I wrote a blog:
I needed people to understand how the world is for me just in case I died. I also wrote an additional nature column for my local newspaper about seeing the natural beauty in the world and why we should be kind to each other. I felt I needed to leave no unfinished business, just in case. Then I tried writing about Red Kites – I’ve been following a breeding pair in a blog diary. I couldn’t finish that blog and ended up in hospital. That’s how I knew I was really ill. I never like to leave things unfinished.
Fortunately I recovered and was able to discuss some of this with a lovely learning disability health liaison nurse who worked with her colleagues to develop easy read documents and a film about the hospital experience at the moment. I also wrote some tips for autism wellbeing that we shared so that people would know that it could be useful to take things like sunglasses, noise-cancelling headphones and other objects that they find useful for regulating their senses if they had to go to hospital too.
I am not fully recovered and have days where my chest is still tight, my breathing is difficult and my cough returns. I also experience tiredness like you could not believe. For me to stay indoors and not have a few walks every day is almost unheard of. I used my time in bed that week to learn a new skill – making an app. And to overcome a lifelong challenge. This is quite astounding, but needs must, and I was about to withdraw my PhD application just because of my phobia of being on camera. I’ve blogged about this too . With the help of a friend I was able to get myself from not ever imagining I could be on a video call, to making several training films where not only do I show part of my body and speak, but it is recorded and shared too! I now recognise the image in photos and mirrors as “me”. Something has clicked inside of me and I have a sense of recognising myself and a connectedness between my body and my mind. This has been a big achievement and essential in some ways – how could I have got through lockdown as a working person, without being able to take part in a conference call?!
Working from home suits me and my role is in the background of all the dedicated key workers out there supporting the most vulnerable people in our society in their homes and care settings. My job has enabled me to neatly compartmentalise my time spent thinking about Covid19 into my working hours. I have been involved in risk assessing the workplace and keeping abreast of the pandemic situation and communicating about it. This has helped me control the urge to become an expert on coronavirus – I watched many people at the start of the pandemic get caught up in learning all they could about the virus. I’m the same – I process and accept things by analysing and understanding them. I can quickly assimilate masses of information and use that to work out what should happen and how it all works. The problem with this very logic based approach is it doesn’t integrate smoothly with the illogical world we live in. I frequently find myself desperately seeking clarity in situations where there is none to be found. I NEED things to have a plausible explanation and be accurate and “right”, and it frustrates and frightens me when they are not. Like I said before, my “normal” world may feel more chaotic than some other peoples because of my sensory processing and this new situation we are in has massively increased my stress and need for order.
I have observed people’s responses to the pandemic and felt astounded at what appears to me to be illogical responses. I have a lifetime of feeling like the character of the little boy in the Hans Christian Anderson story ‘The Emperor’s New Clothes”. Why am I the only person calling out the nonsense before my eyes?!!! I felt confused when people started saying the risks of Covid19 were reduced – even though the figures said otherwise. Lots of people headed for the beach and seemed to behave as if wishful thinking and a sunny day would make them immune to the virus. I have felt frustrated by politics – but not too frustrated. Politics is still predictably dishonest, and full of hidden agendas, power play and unpleasantness – there is always a sense of reassurance in predictability – even unpleasant predictability! I have felt saddened when people have got caught up in arguing with each other about important causes – unable to consider each other’s viewpoints, truly listen to each other and act humanely. But each time, I have had to take a step back and pause and consider to myself: “What is really going on here for me?”, “Am I looking for clarity where there is none?”, “Is this something I can change or is this something for later on?”, “Am I focusing everything on this subject and forgetting that we are living in unprecedented times?”.
My passion for things being “just right” drives me, and the strongest emotion I ever feel in life is the one that I get when people are deliberately dishonest, or misinterpret, or misrepresent me. It rocks my world, unnerves me and makes feel very, very unsafe. In my world, sounds sound different at different times; colours change colour; faces distort; smells fluctuate; my own body comes in and out of focus to the point where I sometimes can’t feel it. People talk in riddles as far as I am concerned. They don’t say what they mean, they are sarcastic and they expect me to ‘just know’ how it all works. My world has never been consistent and I’ve got used to that. When someone deliberately mucks with it I feel very unstable and unsafe. I need to put things right. If a friend has a problem I feel driven to solve it – I have learned that simply listening can be fine too. When I see someone on social media sharing racist propaganda without realising, I feel driven to correct them – but I don’t because no one joins Facebook to become educated. It is an internal battle to keep my mouth shut or my fingers off my keyboard sometimes.
My need for honesty pushes me towards correcting people, but I know this is perceived negatively. I won’t mask my autism by hiding my beliefs and values or acting in a way that is untrue to myself, but I have learned that sometimes it is better to preserve my wellbeing, choose my battles and recognise that other people are different to me. Not only in what they rightly or wrongly believe, but in what matters to them and what their values are too. Some people are not flexible, they are unwilling to see the truth and my need for order and truth does not matter to them one bit. I am always amazed that other people don’t value truth, openness and straight talking in the way that I do. But we are fundamentally different – and that means that they are unlikely to be playing the game of life by the same rules as me! This has been a tough lesson to learn. Much is said about ‘theory of mind’ and empathy and so on with regards to autistic people . There is nothing wrong with autistic people’s empathy in my opinion. I know lots of autistic people and we “get” each other. I totally see why they do things – because it’s why I do things too. I don’t find my autistic friends openness about what they think of me rude, over-familiar or anything other than refreshingly honest and I wish more people were like that. I am well aware that you may think something different to what I think and that comes from our different baackgrounds, neurologies, genetics and so on. I have learned as much as I can about people so that they feel more predictable to me.
The reason that I don’t “get” why a lot of non-autistic people do things and why this isn’t intuitive to me is because I am running on a completely different operating system to them. I function pretty well but I work differently. Think of your mobile phone – lets say it runs on android. Mine is an apple. They both make calls, they both tell the time, they have similar apps. Our phones can do the same things, and apple and android systems have various quirks, and advantages over each other but are still phones at the end of the day. But try running an andriod app on your iPhone. It will not function – ever. They are not the same – an android app will never work on an apple phone. And that is the world I live in. I am not somehow a lesser version of normal, or defective or broken. I don’t even aspire to be “normal”. I don’t need to be fixed, or helped to become more sociable, or more able to suppress the bits of me that are different. I don’t actually want all that. What I want is for non-autistic people to put the same amount of effort into understanding me that I have put into understanding them.
My writing has given me an outlet for sharing my insights and will hopefully enable people who want to understand how autism is for me, and how it may be for some other autistic people, to learn and reflect. I feel vindicated in some ways because I feel like I have a lifetime of not being listened to or heard and I finally have a voice. It is a hobby that can be used with my other hobbies and my passion for the natural world is shared in my wildlife blog http://www.offdowntherabbithole.org
Watching the seasons change reminds me that change is part of nature. It is commonly said that autistic people don’t like change. For me that is not true – and to be pedantic for a moment, I’d say I love change but find unpredictability, lack of clarity, and disorder very unsettling.
We planted cress a few times during lockdown and loved seeing how it visibly grew day by day. We have seen the blue tits build a nest in a hole in the apple tree, visit the nest with food and then fledglings leave and make their way into the wider world. The apple tree itself has grown leaves, blossomed and now has tiny green fruit that are starting to develop a red blush, since I wrote my first blog. We ate carrots for dinner earlier that were barely seedlings when the pandemic was announced. The woodland where I walk nearly every day, was bathed in spring sunlight at the start of the restrictions. On my permitted one hour daily walk I saw the wood anemones bloom, followed by the bluebells and orchids. The first beech leaves unfurled with their vivid, acidic green colour and now they, and the oak and ash canopy have shaded the woodland floor which is green again in the absence of flowers.
The natural world is a place where my senses are most regulated – nothing is really jarring, nauseating or frightening in the way it is in the man-made world. I have enjoyed avoiding towns, people and crowds and felt quite sick earlier when I caught a waft of diesel fumes from the increased number of vehicles using our road. The thought of going out more and being exposed to more sensory input is anxiety producing for me. I will need to take it slowly and let my brain and senses readjust to the increased processing that will be involved. I am finding seeing people wearing face coverings very distressing and I am only able to wear certain masks myself. I have used my insights to prepare some information to help people. This has been well received and I know this distress is shared across many of the autistic community and lots of other people too. I don’t use public transport and I am confident in saying that I am exempt from wearing a face covering – but I don’t like seeing other people in them and I don’t want to justify or explain myself either.
The sight of face coverings, puts me in a state of high anxiety before I’ve even factored in the additional sensory processing. On top of this comes all the new rules. I am already struggling. Some people are sticking to the 2m safe distance whereas others aren’t. Shops and other buildings have lots of signs up and I find lots of signs really disorientating and I can’t read them quickly enough to work out what to do and that annoys people. The rules are different in every building and the unwritten rules are different too. In some places it seems less important to follow the arrows or stand in a queue or so on. It totally screws my mind and I can’t see it getting any easier and no one can help me because we’re all experiencing this together and learning as we go along. The stay at home phase was great – I’d like to stay at home forever. This next phase worries me, the rules are changing fast and they don’t seem logical. I need more clarity but recognise there may not be any. I feel compelled to seek clarity elsewhere, where I may have some hope of getting it – and following my diary rigidly, or organising my digital photos in categories, or repeatedly doing things that soothe me, all help but won’t make the pandemic make more sense.
I can feel myself appearing to be “more autistic”. Of course this is nonsense. I can no more become more autistic than I can become more heterosexual, or more female. I am not regressing, I am responding in a perfectly natural way to a perfectly extraordinary experience. I am also needing a bit of space – I love my family but spending so much time together can feel restrictive at times. We have rearranged our son’s bedroom to give him more space and we’ve made a point of making weekends special again. We had started off by clearly differentiating between weekdays and weekends but over time, every day got a bit samey. Yesterday we walked in the woods and our son swam in the river and we ate cake and drank from our flasks of coffee. It was a joy to be able to go in the car to a nearby favourite spot and walk and feel like we used to before the pandemic started.
I have grown as a person through this situation. I’ve recognised the value of my autism and the value of sharing my insights. Like most people, there are times I have thrived and times I have struggled. I began by sharing how productive I have been. There have been other times where simply getting dressed, making a drink and remembering how to talk have been monumental tasks to achieve. I don’t like it at the moment but it will pass. I don’t want my old normal back and I’m unsure of the new normal. I have learned lots about myself, and about others. I’ve learned how to make an app from scratch and watched myself on film. My love of the natural world has kept me going and my writing has kept me focused. My son, my husband and I have annoyed each other, loved each other, laughed together, and stuck together through this. I have unfinished business that needs to be completed and it seems fitting on this day (Father’s day in the UK) that this blog is dedicated to my dad, and I look forward to when he is able to rest in peace after restrictions are lifted and I can take his ashes back to the forest where they truly belong.