Reflections on autism and COVID

Last year everyone was saying how awful 2020 was. In Australia we had the worst bushfires in recorded history closely followed by COVID19. The year involved successive lockdowns and restrictions on travel. It was like we were living in police state but the reason was not oppression but public health.

For me COVID was a bit different to how I imagine many people experienced it. I was in hospital pretty much continuously from October 2019 to June 2020. When COVID and the subsequent lockdown happened, we had the chief doctor telling us increasingly dire things but we were largely protected from the challenges of lockdown. It was not possible to socially distance a lot of the time. The medication room was a case in point. This room was probably five square meters if that and when you went for your meds it would be you and at least two nurses. If COVID had got into the hospital everyone – staff and patients – would have caught it. My biggest fear was not contracting the virus, although I was concerned about that. My main fear was that I didn’t want the hospital to get repurposed and for me to go home to my flat. This flat, known as whimsy manor was owned by me and caused me more stress than anything else in my life. I lived in fear that I would need to be discharged early and go to the home which had resulted in me getting really unwell with psychosis and mood issues on several occasions. Thankfully I didn’t have to go home and ended up selling Whimsy Manor later in the year after I was discharged from hospital.

I wrote this poem about my time in hospital during lockdown:

COVID – Standing on the sidelines 

From the safety of the hospital news reports of a cruise ship seemed distant, detached

Something from another place

Nothing to concern us here

Meaning finally came with the tape on the floor

Little red and white crosses outside the hospital cafe like latter day crucifixes

Tables and chairs are spirited away to somewhere elsewhere

The realisation hits home – this is real

The fear tempered by medication and the routine of hospital life 

The head psychiatrist at every morning meeting 

With her dire warnings and apologies

Psychiatrists never apologise

This must be serious

None of us know the future 

We look to the staff

Their brave faces and professionalism unconvincingly masking fear and uncertainty 

On the sidelines of the pandemic

Observing unreal reality through mania and psychosis 

Everyone else enduring lockdown but life here goes on

We should be more concerned 

A pandemic that is real yet not real

The institution’s broad arms embracing us as we move into an unknown future  

Not only was I sort of on the sidelines of the pandemic as a hospital patient, I was also on the sidelines due to living in Canberra. We have not had an active case in Canberra for several months. We don’t have to wear masks and the restrictions seem limited to having to sanitise our hands in buildings and scan QR codes when entering premises. People hug, publicly. At work we have numbers on the meeting room doors to ensure we stay socially distant but that is pretty much it. It is very odd watching news reports about places in lockdown when you have just hugged a friend and been at work in a quite full office building, 

I think a lot of autistic people are really struggling and have really struggled during COVID times. Lockdown might benefit some people who like solitude but for a lot of people – autistic and allistic alike – confinement with just yourself or family can be very stressful and upsetting. This isn’t the case for everyone. I have an amusing story of my nephew who is 10 writing to my parents ’Grandma, what do you love about lockdown? I love not having to go to school and see people.’ However I know some people who are traumatised by the lockdown and what it entails. I think another issue for many autistic people is the uncertainties involved. How long will the pandemic be an issue? Will I or someone I love and care for catch it? Will we have to go into lockdown again? Will I be able to see my family who live in hot spot areas? Another issue people encounter is when others flout the rules. Many autistic people are very strongly motivated by doing the right thing so this is really difficult to see. And pulling someone up for doing the wrong thing can result in reprisals, even if it is the right thing to do.

My biggest issue with the pandemic in recent times is the travel restrictions. My family in Australia all live in Victoria. Victoria has been in some of the strictest lockdowns in the country. I got to visit at the end of 2020 but only just managed to as restrictions changed while I was actually there.  I haven’t seen my family who live in Melbourne for so long I have forgotten how long it actually is. This is not to mention friends living in hot spot areas. I have one lovely friend in Melbourne who often mentions how she would love to see me but I have no idea when I will be able to get there. Travel restrictions seem to change every week or two. In terms of my advocacy work I haven’t been to a face to face event interstate since October 2019. I have a couple of face to face conferences booked for this year but I will not be surprised if they get cancelled or postponed.

I wonder how this period in history will be viewed in future generations. It is one of the most challenging times I have lived through and it is actually is true that ‘we are all in it together.’ I wonder how it will impact on the mental health of people and especially autistic people who tend to be more prone to mental health issues. I hope the new vaccine will be a game changer and help the world to move into the future leaving COVID behind us. I realised I haven’t mentioned the economy in any of this which is a whole other issue for autistic people given how difficult it can be for us to find suitable work. Maybe that is something for another post.

Self portrait from 2020

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