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Chaos Within Chaos: Living with Autism Through a Pandemic

An update

I’m writing this from the dining room in my parents’ house, which I’ve converted into a makeshift study area. Both of my parents are working from home which limits my access to the home office I’m used to using, so I’ve had to take on the challenge of adapting to a new area and comfort zone.

I moved here from London a few months ago, though it feels like longer. It’s been a while since my last post, and I want to explain a few reasons as to why I haven’t been as productive in the past few months, and also discuss the implications of living with autism through a pandemic. It’s not been easy for any of us, and by no means do I want to draw attention to my situation over those who are less fortunate than me. However I think it’s important to look into how this huge worldwide crisis affects us individually. In the society we live in today, especially in the west, we are valued by the role we play in the greater picture – that is, usually, to mould us into the working shape that a capitalist system demands of us. It’s therefore harder to look inwards, to assess our own situation and the role we play in our own lives. I’ve been faced with a multitude of pressures, from social media, from friends, from academia, from politics, and mostly from myself, to maintain a level of productivity during this time that would allow me to participate in the wider cultural phenomenon of staunch individualism and self-fulfilment. Whilst I actively try to deter myself from these pressures, it is the nature of life in our times to need to comply in order to survive. However, it’s also easy to forget where our individual conditions – in my case, autism – factor in and require us to reflect on what aspects of life we prioritise. Essentially, I want to talk how life in the COVID-19 pandemic has made me reflect on my relationship with autism and the finer parts of everyday mundanity, shaping how I exist and maintain a steady state of mind.

It’s an understatement to say that the COVID-19 crisis has put me through challenges, the same for my fellow autistic folks all over the world. Change, for us, is a central threat to our idea of safety and order. It requires total re-evaluation of the spaces of comfort and rigid routines that we have spent our lives building and nurturing, and that we rely on every day to avoid the total chaos caused by one slight imperfection, one loose wheel. Moving from the space and safety network I had established in London was the first major shift that threw me. I was living in university accommodation so I would be moving out this month anyway. But having to pack my things so early, when I had mentally planned to stay for longer, was very weird. I had to adjust to a new way of life, living and working in the same house as my parents – a challenge in itself due to my sensory issues and need for complete quiet in my safe spaces. I had to process not being able to see my beautiful community of friends in London for an indefinite amount of time, losing a major physical support network I relied on so dependently for the sake of my mental health. I had to adjust my working hours: waking up at 7pm and working through the night while the house was quiet, not being able to see daylight until it was time to go to bed.

Looking back, I think I handled all the changes extremely well, all things considered. The pandemic was a huge concern for me, yet I never let it send me into the depths of panic, because this was something out of my control. I think this is an important thing to highlight in terms of defining autism, and I’m curious to know if this is something other people with autism have. Personally, I’m threatened more by changes and disruptions that I have direct control over, rather than wider issues that everyone has to face. The need for control is a huge part of my autism; I have a very specific idea of how I need things to be in order to feel safe and satisfied. So when a pandemic comes along, it significantly threatens that order, yet logically there is nothing I can do, therefore creating a novel situation that I have to take control over. Taking control and maximising the opportunities of the new situation is my new focus, and it’s both a good thing and a bad thing. On the one hand, it’s a more positive and practical approach that avoids the temptation of just sinking into despair and hopelessness. But equally, it encourages a form of hyper-productivity and an idealistic approach that has become overwhelming and impossible to fulfil. It’s very easy on that first day of lockdown (and this is coming from someone who is privileged enough to enjoy the safety of my own home and free time) to say “this is a perfect opportunity to broaden my portfolio of skills, more time to write, more time to learn!” And you’d be right. But it’s really not that easy, as my fellow creatives will agree.

Once I turned my final uni essay for the year in, I looked into finding ways to maximise creativity in the endless spare time. I became obsessed with the idea of living like an old fashioned author, living and breathing in a workspace of ideas and pure inspiration, with several mediums at hand to translate these ideas. In this sense, productivity and creativity are so romanticised in a capitalist society to the point where one unfulfilled goal means total failure, total unworthiness. I managed to paint some things, write a few pages in a diary, plant some potential film ideas into the soil, but not much else came to fruition in those few weeks. In all honesty, my mental health has taken a toll with the endlessly depressing politics, the rising death toll, the weeks spent without my friends, dealing with a breakup, and having to cope in a house full of sensory triggers. When you have heightened senses or misophonia, and you associate a familiar environment with your triggers, you become constantly aware and constantly poised to feel the pain and rage caused by the trigger, even when it isn’t even physically there. I find myself on edge all the time, even in my sleep. I am never fully rested, always alert, never able to relax into an activity for fear of disturbance. So I can crucify myself all I want for not using the opportunity of lockdown to maximise my creativity and skillset, but the simple fact is that living with autism is a barrier to a lot of those idealistic promises that seem so easy at first. Autism is great, at times. But, God, it’s exhausting, and sometimes completely debilitating.

In a way, the pandemic has forced me to come face to face with some of the worst aspects of myself, ones that I’ve perhaps avoided to challenge in order to attempt to live “normally”. I’ve learned that I cannot simply take a break from being autistic, I can’t put it away in a box whilst I deal with the situation at hand. I am my autism, and my autism is me. We have to face it together, whether I like it or not. And this has been a tough process, but I’m starting to feel like I’ll come out of the other end having learned things about myself I wouldn’t have even thought of if it weren’t for lockdown. That’s not to call it a blessing: I’ll be clear again that I’m extremely lucky to be able to live in the way that I do, and that the lockdown is not an opportunity for rest for a lot of people, neither is it a good omen, taking the shocking UK infection rate and death toll into account. But through it all, for my own sake, I can only hope that I gain from this experience a new relationship with autism, a better understanding of my needs and how they must adapt to each new situation. I have learned the hard way that challenging these dependent needs, as you would with a neurotypical child, is a losing game. My priority is feeling safe, feeling as calm as I can be, and not pushing myself beyond what I am comfortable with for the sake of a petty opportunity.

I want to share a few things that have helped me. Firstly, the lack of real physical contact with the outside world has dampened my spirit a lot, especially with the current political crises and movements taking place globally. I’ve felt really helpless as I’ve not been able to make a difference with my physical presence, and therefore inadequate as an activist and ally. But reading more, both fiction and non-fiction, has turned out to be an ample solution for this. I’m a fierce believer in the power of knowledge, it’s something that really excites me as an accessible and enjoyable way of living outside of the box of personal perspective. Reading has provided a sense of escapism not only for personal pleasure, but also to educate myself on issues and discussions that I would normally be closed off from. So extending my knowledge of the wider world beyond my little small town box is extremely satisfying and also useful in becoming a more empathetic and connected person, which is what I always strive for, from my very core. I cannot think of anything more terrifying than being trapped in suburbia for the rest of my life.

I started off lockdown by reading Dune – in preparation for Denis Villeneuve’s upcoming film adaptation. I found it was an overwhelming and complex read but so enthralling and beautiful, I’m very excited for the film, whenever it happens. I’ve also read a few David Lynch books and a couple of books sent to me from a dear friend: Are Prisons Obsolete? by Angela Davis and The Master’s Tools Will Never Dismantle The Master’s House by Audre Lorde. I’m now reading Why I’m No Longer Talking to White People About Race by Reni Eddo-Lodge. All three of these are incredibly powerful and informative, they have given me plenty to think about in terms of what my role is as a white person in the movement for black liberation, and how to navigate the dialogue from this position. I recommend them all highly.

Another thing is meditating. I’ve been doing all sorts of variations of meditation over many years, mainly in the form of mindfulness, anything my therapists would recommend, but nothing ever really made a huge difference. I learned about Transcendental Meditation through The Beatles and their enlightenment era, so naturally I had always been critical of it due to its connections to cult behaviours. I knew that in order to practice it “properly” you had to have a grand or so in spare change to pay an instructor, so to me it was more of an organised movement capitalising off of a wellness trend. It was only when I started reading Catching the Big Fish by David Lynch that I learned that TM is actually way more accessible than the gurus would have you believe. You don’t have to pay for a course, you can literally just do it yourself at home. So I did just that. It took me a while to learn and settle into it, but once I did, I realised the benefits immediately. Firstly, it requires ZERO effort, as opposed to most forms of mindfulness in which you must keep a steady focus on breathing and blocking out thoughts. With TM, the only thing you need to do is repeat a word in your head, and let your thoughts pass through. It is essentially a 15-20 minute session of sitting quietly and thinking, which has not only helped to calm me, but it has encouraged me to engage with my thoughts in an open and compassionate way, in turn allowing for more creativity. It probably doesn’t work for everyone, but I feel that especially with autism it makes a difference. I never managed to reap the real benefits of mindfulness just because I found the process of not thinking extremely hard and difficult to take seriously, being a more mechanical thinker. TM makes more sense to me, as it is more tolerant of any autistic objections to certain thought processes. I’d be interested in hearing if any fellow autistics have tried TM and if it has worked for them or not, please get in touch!

To close this post, I want to add that I’ve been watching a LOT of films! I’m hoping I will find the energy and inspiration to write about something soon, but I won’t put a time and date on it. Aside from reading, watching films has been another excellent form of escapism and enjoyment, and one of the great things about these few months in lockdown has been the opportunity to consume as much wonderful cinematic content as possible. So that will continue, and I encourage you all to keep watching films where you can, there’s a lot out there to discover and I’d love recommendations. I’ve recently been making some personalised film watchlists for some friends, so if that interests you please don’t hesitate to ask for your own curated list!

I hope everyone is staying safe and staying indoors where possible. Please see the links below for things to support.

Black Lives Matter

Yemen Crisis

LGBTQ rights in Poland

Trans Rights

Help Palestine

Stand with Hong Kong