I try and use this blog as a useful resource and not as a platform to vent , but as my country seems to gear up for a second wave of covid 19, I need to vent. Let me devote this next paragraph to that activity *breathes in*:
“What on earth was that last week? Here I am trying to create the mental energy to deal with these already stressful times and I get bombarded with anxiety. Upon finding out my area was going into lockdown, I was thrown into doubt about my work routine – something thats been keeping me sane for the past few weeks. Despite reaching a compromise over that, I’m still not sure which family members I’m going to get to see and when! Do we expect these restrictions to carry over into Christmas? Can we expect another national lockdown? More local lockdowns? This was the week when the stark reality of our uncertain future was thrown starkly into the light, and if the mixed messages are anything to go by, nobody, especially not the politicians have a clue what happens next!”
*breathes out* ah, that’s better. All joking aside my frustration does have a serious side. The prospect of a second wave is not something anyone is looking forward to having to deal with and anyone would understand the frustration many feel at having to suddenly revert to a lockdown way of behaving, or at least prepare for that possibility.
That may be why the nuances surrounding the implications of a second wave seem more apparent this time around. Maybe its to do with the frustration people feel at already having been through so much, and a mistrust of those who are supposed to be guiding us through? That’s not to downplay the seriousness of the coronavirus. It is very serious and requires us all to be vigilant bur we gain nothing by treating peoples frustrations as if they’re whining complaints, secondary to the ‘national effort’.
This blog post will address some of those anxieties from an autistic perspective, and asks how we can resolve them in a responsible way.
We tend to think about transitions as huge moments when someone’s life changes. While its true that those changes can impact autisitc people in adverse ways, we make transitions everyday.
Picture the scene: I’m going for a walk in the park . I take a cursory glance at social media which is a mistake under most circumstances, and see that my area has gone into lockdown. My mood immediately drops from pleasant to mortified. I negotiate with work, I tell them about my wellbeing needs and I agree to come in for about two days a week. I consider still seeing my family on the basis that I live with them.half the time. That said, I promise myself to stop socializing outside of those settings. After a serious and sombre message from the prime minister, my mind takes on a significantly more negative tone. Fully expecting to be met with a fearful and quiet atmosphere the next day, my mood heading into work is one of dejection. After I come into work I am surprised to find weirdly busy atmosphere, and relieved to see that people share my frustrations with trying to balance personal wellbeing and collective responsibility for keeping others safe.
This is an abridged version of how volatile my emotions can be when confronted with a combination of sudden changes and uncertainty. I’m not looking for sympathy but perhaps empathy. On Monday night halfway through writing a piece for my music blog I gave up the task and sobbed. I’ve described before how I’m quite emotionally vulnerable anyway but in that moment everything that had been weighing on me, finally made me temporarily collapse. For the past few days I’ve been carrying around a sensation which is hard to describe, but feels like an emotional heaviness. I’m going through a process of autistic burnout.
To anyone reading this who might be going through something similar, its okay to feel this way. In recent weeks more and more disscussion has focussed on the imposing of local lockdowns and second waves. For many of us who enjoy company and like to have routines in place which involve going places and being active, these are scary times. For many, including myself, a sense of safety as well as sensory stimulation and happiness was being built up through those routines, which we were already devoting effort and mental energy in integrating in to.
Now that things are getting bad again, we are being asked to transition to a new structure, and new way of thinking whereby we might not be getting that person to person interaction with friends or family members that so many of us need. This rightly makes us feel uneasy or even wanting to push back against the change. As an aside to that the uncertainty – the increased fear that things might change further, or that we might be plunged back into lockdown, makes preparing mentally and trying to plan out events in your head near impossible. As it currently stands, not too much of my post lockdown routine has changed, but the worry induced by still being in an uncertain position has caused me great amounts of anxiety.
The one piece of advice I can give for those feeling similar is to remind yourself of the temporality of the situation. Autistic people especially will be working particularly hard to mask how thier feeling, yet we can’t do so all the time as that expends precious mental energy. Its important to speak to people you trust and tell them how you feel. Indulge in that activity that always makes you feel better – for me thats listening to music. If you imagine your mental energy supplies like a tank these can all help replenish you in some small way. Anything that reminds you that this experience won’t last forever, will be incredibly helpful in getting you through!
Reason to be worried?
So far, this blog has focussed mainly on myself and how I’m feeling though as I’ve said time and again, I consider myself to be in a relatively priveleged position. I’m in stable employment. While it may not be that good for me to work from home I am able to do so. Being young without any physical health issues, I’m also at low risk of dying from Covid-19.
Spare a thought then for those who are dealing with this transition in thier lives worse than me. A few blog posts ago I detailed my struggles in uni and finding work, as an autistic person. I am very grateful that I don’t have to deal with the struggle of looking for work now, or being in higher education and experiencing even less of the camaraderie and friendship which rightly defines that era of life. Not to mention, that 10% percent of autistic people with physical disabilities or underlying health conditions, those who suffer from atypical immune responses like autoimmune disorder.
I have explained how how I personally suffer on the mental health front, however this is a vast and wide ranging problem. The Autism in Adulthood journal takes care to point out that with social distancing a key factor in reducing the spread of the virus, many of the services available to autisitc people have disappeared. I can only imagine what the people who I used to support on a voluntary basis are going through. We know that ongoing isolation and loneliness can be as detrimental to a persons health as smoking or fast food can be. Also, research done on the Ebola epidemic suggests that living through one may be associated with symptoms of depression, anxiety and post-traumatic stress disorder. As the journal just cited states: ‘Given that autistic people are already overwhelmingly likely to experience mental illness, and nine times more likely than the general population to die by suicide, the mental health consequences of COVID-19 may be devastating’ .
I bring this up as as far as I can tell very little has been considered about disability, either in Covid19 recovery planning or policymaking. Its not been entirely absent. Some support services as well as university courses have been put online, shops have introduced priority opening times for disabled customers, and mutual aid groups are helping to deliver essential supplies to the disabled, as well as hosting online meets etc. A lot of the community responses we’ve seen have been inspiring but in terms of national action plans for looking after disabled people during covid, and helping them deal with the effects of returning to a post covid world, I’m seeing very little.
In the UK, the response to the virus is looking less and less like a national effort that we all need to unite for and more like a curtian-twitiching dystopia. Last week the UK parliaments joint committee on human rights published a report which stated that “It is unacceptable that many thousands of people are being fined in circumstances where the lockdown regulations contain unclear and ambiguous language”. Government ministers have made admittedly non official statements encouraging people to snitch on people breaking the ‘rule of six’. This is in spite of constantly guidance over what you should or should not do, and an absence of financial support to employees or people self isolating.
The underlying moral here is: Give people who are anxious and worried the help that they need, while combining that with clear and practical instructions, and people will do what’s required. Create a climate of fear with an air of uncertainty as to what the rules are and whether they should obey them, and people kick back .
An Atypical Perspective…
Its normal to find transitions scary: If you view your experiences as a train journey and every sudden change as a diversion to some uncertain place, thats rightly going to make you feel anxious. In those situations we want to know where we’re going and what we’ll encounter when we get there. Not having that makes us uneasy. To overcome that worry, cling to the elements in your life which are more certain. Phone a loved one, listen to your favourite song. These help us to maintain that sense of order and certainty which are necessary for everyone’s wellbeing, especially autisitc people!
The Coronavirus is making disabled people ill (in more ways than one): Talking about peoples health and wellbeing with regard to the coronavirus is not an act of defiance against the restrictions. By contrast, its a plea to help the most vulnerable at this time. To have support services still in place to help autisitc and disabled people through the coronavirus period, so that we can be a more supportive society post-covid. Efforts to promote this have focussed on encouraging individual acts of charity, which while welcome, fail to confront the international crisis in physical and mental health, worsened by the pandemic. Rather, these problems require our leaders to pay attention and put forward a coordinated response that strengthens the ability of communities to support each other.
Creating a climate of suspicion is counterproductive: From an autistic perspective this uncertainty creates a sensation of information overload, where our base emotional instincts overtake our ability to effectively process all the information being chucked our way. This ultimately means that going about my routine for the sake of my own wellbeing, or seeing a family member that I live with half the time, becomes treated with a sort of suspicion. By mutual effect, this makes people especially likely to distrust authority and disobey regulations, especially when they believe they have a need which prevents them from complying. Considering that I have a fear of confrontation, especially from people in authority, the uncertainty fueled by our leaders furthers my sense of panic. Put simply, don’t confuse people, and support them where possible. With that mantra, we will hopefully still have a society once this crisis is over.