Living with Autism in 2020

What does it mean to be autistic in the time of Coronavirus?

As I sit at home in the May bank holiday sunshine, enjoying the weather and a cool drink, I cannot help but feel the pangs of guilt.

My workplace closed on March 23rd when lockdown began and has been operating via rota for over two months now. But I have spent the last eight weeks at home, rarely leaving the safety of my home. Living close to the school and wanting to do by part, I immediately volunteered to go to into work when the lockdown was enforced and was told that I would be going in once a week starting from the second week of April.

On the day I was to return, I had what I think is the worst anxiety attack I have ever experienced. Within 10 minutes of my arrival and speaking to my boss I had so many worries flooding my system that my breath left me and I began to sweat profusely. What if I got sick? What if my mum got sick? What if my anxiety meant I could not perform my work to the expected standard? What would people think if I suddenly had a breakdown?

After the five more minutes had passed I was back into the office speaking to my boss and asking to go home. Thankfully, being aware of my condition, she granted me leave to go. My anxiety over the Coronavirus was simply to much to bear.

The problem remains that Autism provides the wonderful double-edged sword of anxiety and depression. These two conditions normally come alongside Autism in some perverse package and work in tandem to make things as difficult as possible. Aside from my worries about Coronavirus, my work colleagues, friends and relatives, I also had the added guilt of knowing I had been told to stay at home while others risked their lives, leaving the safety of their homes to provide essential services for the nation.

Like a tug of war inside my mind, I have been left with a mixture of toxic thoughts worse than anything I felt pre-lockdown.

Having left the house very little in the past two months and touching nothing when outside of my home, the knowledge that I will soon be called back to work is filling me with dread. Working in a school with individuals who may find social-distancing protocol difficult is daunting. I cannot wash my hands constantly, and I know I will inadvertently touch my face at some point. It feels inevitable that I, or someone close to me, will succumb to the virus.

I have struggled to find any suitable coping mechanisms that truly work, with the only solace I get coming from the pulling of my hair. I do not know if this is Trichotillomania (the hair-pulling disorder) or simply an Autistic stim. Either way, it is a behaviour that flares up in moments of stress and has returned with a vengeance of late. A large chunk of my hairline has been torn out and I’ve even considered shaving my hair to stop this behaviour.

Returning to the feelings of guilt, I have found a way of coping that helps. But simultaneously gives me feelings of guilt. Since lockdown in the U.K. began I have enjoyed catching up on some much-missed video game time. Over the past two months, I have spent many hours in front of my Xbox having an absolute blast.

But there to greet me like a loyal dog was the guilt. Thoughts began to circulate that made me feel low. I was being paid to stay at home and enjoy myself. Why wasn’t I being more productive? Other’s lives were at stake and I was playing silly games. I was letting everyone else down.

All of these questions and more have troubled me of late.

Nothing seems to be helping, any attempt at distraction only leads to more anxiety and guilt, the helplines and websites all seem hollow in their efforts to help, and writing is, at present, my only solace.

To be autistic right now is, in a word, hard. I’m not going to bother describing the experience with fancy language or rosy metaphors. Right now, I think that simplicity is the best way to go. When anxiety is a constant companion and can cause stress in the brightest of times, then in times like these it only adds an extra dimension of suffering for those of us unlucky enough to bear it. I only hope that the lockdown ends soon as it seems to be a magnifier for those like me that struggle to live a normal life, even in the best of times.

But I will not be beaten so easily. To quote a great author, I will try to go ahead with the following mindset:

“Frodo: I wish the Ring had never come to me. I wish none of this had happened.
Gandalf: So do all who live to see such times, but that is not for them to decide. All we have to decide is what to do with the time that is given to us.”

(J.R.R. Tolkien, The Lord of the Rings)

I go forward with the determination to follow the sage advice of Gandalf the Grey. I have no control over the world around me, but I do have control of my actions, and I am persistent in my desire to carry on.

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