A Pandemic State of Being: autistic reflections

One of the scariest things, I find is not remembering how you felt towards something. As an autistic person, emotion acts as something of an anchor, reminding me of times or experiences. If, for instance, you asked me to describe my last gathering with friends before the first lockdown, I could perhaps sketch out the rough details of what happened but at this point I’m just liable to say ‘It felt relieving’. In moments when nothing seems wrong, its very difficult to believe that anything is wrong, even in spite of all the news stories telling us that yes, something was indeed wrong. memories of how I felt upon a specific date or event help me to tether myself to specific memories or experiences.

I can tell you how I felt upon the second lockdown, as that happened after a period of relative stability. To have my once again thrown into uncertainty sent me into a temporary period of burnout and exhaustion. Coupled with the unceasingly bleak media coverage, the anxiety that I—and many other autistic people -live with, had peaked. Still, its for precisely that reason that I don’t remember how I felt upon the first lockdown. Did I feel the same way as I felt upon the second, and just forgot? If thats the case then that’s even more concerning, but my memory associated with particularly strong emotions means I somewhat doubt that. A far more likely reason is that the initial ‘novelty’ of the pandemic meant that I was bewildered by the whole experience. None of us were in control and thus any strong emotions or opinions we could have towards the virus were futile. For something like a lockdown to happen once in the life of an autistic person results in a deep and profound sense of uncertainty. For it to happen more than once results in the anxiety of going backwards after some sense of certainty has been reestablished.

On the emotional toll…

In my blog on the process of “social grief” I tried to present issues which lead to mass death and suffering in terms of an understanding of mental health, but there’s another concept that’s useful here – trauma. I want to refrain from saying that we are necessarily living through the first trauma event in several decades. Looking at events like Grenfell and reports of climate disaster flooding in from across several continents, its understandable that even people not directly affected by these could have some trauma associated with knowing that these kind of disasters could easily reach thier door. That said, Covid-19 is a unique case in that while it doesn’t effect all communities with the same level of severity, as a highly transmissible virus its experienced with a degree of universality.

The UK Trauma council have an interesting definition for the state of trauma, arguing that is should be understood as a disturbance in the process of “meaning making”. So to speak, when an event comes along which overturns the way you see yourself and the world around you, that disturbs your orienting systems which allow you to interpret your experiences. For example, before the pandemic was officially declared many people – including myself – wrongly assigned little meaning or significance to covid, partly because it was difficult to imagine anything fundamental changing in our lives. The UK Trauma council argue that “Through meaning making, individuals  restore a sense of the world as meaningful and their own lives as worthwhile”. This might be why elements such as routine have been so important in giving people a sense of stability.

Even the most simple changes to our lives can result in trauma. The identity of lots of people on the spectrum in particular is tied up in our ways of going about things, in our social circles and routines. The first lockdown felt like more of a slow burn, everyone knew it was coming and no one expected it to last as long as it did. Being unexpectedly forced back into not seeing anyone for a few months caused many people significant stress. Unexpected events deplete our mental resilience and if nothing fills the gap to help explain to yourself the usefulness of your life, then that can kick of a cycle of mental ill health, making you less able to adapt to changes.

I appreciate this is all slightly abstract so let’s look at some more concrete, albeit bleak, examples. Most obviously, the reports of death and illness emanating from the news each night are not doing our mental health any favours and can lead to a process known as “vicarious traumatisation”. A survey of psychotherapists who had heard about traumatic pandemic experiences found that 15% had experienced “high levels” of this kind of ‘trauma by absorption’. On top of that, the usual rituals of mourning and reconciliation – meeting with loved ones etc. – which follow traumatic events, have been restricted and made to feel different.

“the evidence is clear that communal gatherings and social networks are essential for adequate recovery. With Covid-19, though, meeting other people is precisely what spreads the virus. The treatment for mass trauma in one case is the problem in ours”

BBC Future, How to heal the ‘mass trauma’ of Covid-19

That the threat is invisible is part of the issue. It means that ordinary environments, even one we have positive memories associated with, get reframed as dangerous places where the virus can spread and mutate. Going back to the anchoring effect I was talking about earlier, whereby people like me can feel a certain sense of stability associated with a specific place, this is especially frightening. Speaking as someone who see’s even small events in quite huge, systemic terms, I’m scared as to how I will view the world in the aftermath of the pandemic. Autistic people especially, could use those narratives built up over the course of the pandemic – “we never know what to expect, the world is unsafe, our leaders aren’t looking after us” – to develop quite a scary view of thier surroundings. Hopefully you can see how all this meets the definition of what we might call “collective trauma”.

Healing and the peril of forgetting…

In psychology, things like everyday ‘rituals’ and shared social spaces are called “the basic tissues of social life”. Of course, the pandemic does present opportunities for us to reform in digital spaces for instance, but also presents the risk of damaging the wellbeing and sense of psychological safety that comes from our communities. However, the fact that we have all experienced the pandemic in one way or another means that it is linked to a group identity, as are the narratives about “when this is all over”. A collectives relationship with trauma, according to psychologists like Gilad Hirschberger, helps people to overcome, transcend and move past what they have been through.

This raises an important issue – perhaps in the aftermath of the pandemic the way we talk about it should focus on celebrating the fact that its over, and mourning for all those we’ve lost, because that implies that we’d be remembering the experience. This might seem like a strange thing to point out but I genuinely think there is danger in putting coronavirus behind us in our memories. Covid is often compared to the 1918 influenza pandemic, but only one country instituted a national memorial process – and that country was New Zealand. I don’t know if there’s any link there between how they reacted to that pandemic, and how they’ve behaved in this one, but the idea that there could be provides us with an interesting thought experiment.

“Initially, AIDS seemed to single out gay men and other so-called ‘at-risk groups’, such as Haitians and heroin users. As churches refused to bury victims and schools barred haemophiliacs infected with the virus through contaminated blood products, it is unsurprising that the shame and grief of friends and family members quickly turned to anger and demands for political change. By contrast, even when the Spanish flu mutated into a virulent killer in the autumn of 1918, most of the deaths were compressed into a short four-week period, with the mortality falling on a wide cross-section of society. Cutting across social, sexual and ethnic lines, it did not become a vehicle for stigma or a motor for outrage”

Mark Honigsbaum, Why the 1918 Spanish flu defied both memory and imagination

Obviously the impact of WWI immediately preceding the 1918 pandemic can’t be ignored, but I don’t think its as simple as that. Why is it you don’t hear anyone talk about the 1957 influenza pandemic or even the 2002 SARS outbreak? Perhaps there’s a lesson here about how we talk about pandemics. As I’ve pointed out, in the sense of wanting to come together after the pandemic, its useful to think about the situation affecting all of us equally. In some senses it has, but in other senses it hasn’t. You just need to take a cursory glance through some of my blogs to see that there’s been outrage about people with learning difficulties not being prioritized by the vaccine despite the significantly higher death rate amongst people in that group. This has been accompanied by multiple other injustices against autisitc and disabled people, which I’m not going to revisit here. Making meaning of pandemic trauma is difficult because disease deaths simply aren’t as “narrativized”. HIV/AIDS was painted in a narrative-based because it initially appeared to effect a specific group, so was siezed upon by different sides in a larger political battle. However, pandemics are rarely framed by the media, in such political terms. Do they have an aim? Who is the enemy? What’s the cautionary tale?

Without answers to these questions, there’s a risk that this pandemic could shrink to the backgrounds of peoples memories like past ones did, and I think its important that we do remember. Outside of the obvious – and highly politicized – idea that not commemorating may affect our preparedness for future crises, it is important we posses those channels for trauma and catharsis. Art, memorials, activism on the issues the virus has highlighted and public gatherings tinged with the memory of the pandemic, will be central in understanding our own emotions and making a difference for the future.

An Atypical Perspective…

Speaking as someone who considers themselves highly emotional and motivated by emotion, Covid-19 is somewhat traumatic for me. I imagine it must be immeasurably traumatic for those who have experienced the pandemic in more adverse ways than I have. In the spirit of meaning making, we will all – autistic or non autistic – have to work hard to rebuild our routines, our relationships with loved ones and our ways of thinking about the world in a positive light. This will end, however it is likely that our ways of thinking about the world have been coloured and changed, probably permanently. I’m sure you’ve seen me say in the past that I will think twice before taking anything for granted ever again. Just because the past year has left an imprint on our minds, dosent mean we can’t use that to safeguard our own wellbeing and to shape a better future, for all of us.

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