COVID-19: An Autistic Perspective

So, what has been happening in the world?  And how have I and my team been coping?

I think now is a ripe time for some open thoughts on Coronavirus. The chaos of it appeared very suddenly and I feel that everyone has been struggling to make their way through this ordeal, with all the constant changes.

We all have a long road ahead of us to get through this. Nobody was ready for it. I don’t think any of us could‘ve been ready and now here we are. Each of us has our own challenges ahead. I know that I will get through it. I’m old, and grizzled – my husband, Michael, is even more grizzled. This is as scary for us as it is for anyone else, but the world isn’t ending just yet - so we must keep to our senses. Many of us are parents, and carers, and the people we care for need to be able to trust in us - they will be looking to us for guidance.

Let’s have a look at how Autistics might be perceiving this world event.

How are people on the Spectrum feeling about this? What are they thinking?

And what can be take from them to help ourselves in overcoming this ordeal?

I always have my son, Sam, to ask – but recently I have had another voice who I can listen to: A young man who I employed earlier this year and who is also on the Spectrum. On Monday, sadly, I had to tell him that he will need to work remotely from home, and he continues to be an asset by committing to this new arrangement.

I thought that I should ask him about how he’s been coping with the changes and what he thinks about all this mayhem.

He got my first email after getting home from some business on Mary Street, the main street in Gympie. This was on Monday, the first day of the lock-down that was announced by our Prime Minister, Scott Morrison. He told me how he went into a building on Mary Street for a few hours in the morning and then he exited at midday to find that the street was nearly empty and that all of the cafes and restaurants had taken their chairs and tables inside.

While he was expecting it because the announcement was made the night before, it still seemed so strange to him. He also found it very eerie as the thing he loved the most about Mary Street was its vibrancy and its café culture; the atmosphere of it all had a soothing effect on him, he told me. He also said that he went on to spend some time walking up and down the length of the street. He explained to me that the rush of getting from one place to another can cause him stress and, because of this, he likes walking between destinations at a slow pace, never going across a road at a crossing until the green light is given (even when others walk on by once they notice the cars stopping), and always parking his car at the other end of a park near Mary Street so that he has to walk through it to get to work each day and enjoy the scenery.

He then told me about how he walked past one of his favourite cafes on Mary Street. The tables and chairs had been taken inside but it looked like they were still open. He was aware that many venues were now doing take-away and he wanted to have one of their delightful sandwiches one last time before heading home to isolate, but he was still unsure if it was okay to go inside and about what to do.

“I was worried that upon taking myself into that café, a dozen policemen would manifest from the nether and declare loudly to me, ‘Stop, criminal scum! You have violated the law! Surrender or pay with your blood!’ before pouncing on me. The place does lovely sandwiches, but I would not want a broken arm for one.”

He then tells me that he walked all the way down the street, pondering how to resolve his predicament, before getting out his phone and going on Facebook to check posts by the café to see if they had announced that they were doing take-away. Once he confirmed for himself that they were, he trotted back up the street with a smile.

“I really wanted a sandwich”, he told me

He then made his way home where he began his work for the day. Once he got home, he started to notice a few issues with the new arrangement. He explained to me that they all stem from how he absorbs the environment. Unlike many Autistics who find it exhausting to go out and to engage because they may need to camouflage, or they have another kind of anxiety disorder, he absorbs the environment around him and his demeanor naturally adapts to that environment.

He uses this strategically as he can be having a bad day, but that day can be improved by a positive interaction with another person. He may also have a negative interaction that causes his mood to become more negative, but he finds himself almost always having positive interactions, so even if he has a negative interaction, his mood will only be sour for a little while until his next positive one. And he has an entire routine around this – he gets up and goes to the gym in the morning. The physical stimulation and the immediate exposure to a loud and crowded environment causes his brain to turn-on its “outgoing” mode. He then goes to work after that and by the time he gets home, that “outgoing” mode stays on for the rest of the day until bedtime.

“It once was the norm that I would have either a relaxed manner at home and a stressed manner when I went out, or a stressed manner at home that would succumb to a relaxed manner when I went out – the split in the personality could be very distressing and I often would sense that I was deprived of control over my faculties. With my routine as it is, I could get into a relaxed mood for the entirety of the day and when I did have those episodes of stress, they were isolated as I had something else that needed to be done, and my mind does not permit itself to deviate too rapidly from what it needs to focus on to achieve its objectives.”

However, working from home jeopardises this. His routine has changed, and he has noticed that he has more of a temper. He also does intermittent fasting, which involves the routine of not eating after dinner until lunchtime the next day. So, now he wakes up, he does not have breakfast or coffee (which I cannot survive without, so I don’t know how he does it!) and then immediately gets to work without any exercise.

To top this off, his brother has ADHD and, unlike my employee who internalises, his brother externalises and is stressing about a lot as well. He plays video games in his room which is just next to where my employee works, and often gets louder the more immersed in his game that he becomes. For someone who has just woken up, has not had breakfast or a cup of coffee, it certainly has become a cause for trouble.

He explains to me that he is already developing some ideas to arrange a routine that adapts to the new situation. He did start doing exercise at home but only before lunch; now, however, he thinks that he will need to do it in the morning to lose some of the tenseness from the night before. He also tells me that he may need to do his work for me later in the evening when his brother is a little quieter and he does not have his “morning mood” and he has eaten something, and this is fine with me because he is only employed part-time but he does very good work with the time I have him.

So, he’s adapting. But Autism is a spectrum, and people on it are going to behave differently to all the changes. There are a lot of memes going around at the moment about how Autistics, and those with social anxieties, are now enjoying this new world where social isolation is the new normal.

My employee is different.

“This would have been a utopia for me a decade ago. Not so anymore, for I found a way to be myself whilst out and in the world. And the folks who I linger around do find their own way to accept me for who I am. There is not aught that I do to earn this – I only be myself and believe in the truism that I do have the worth to give something to another with my company, and that this is enough for them to yearn for that company.”

So, social isolation is not really something he is looking forward to. Like all Autistics, he has a sensory processing disorder and is hypersensitive to many stimulants. However, as a sensory-seeker, he finds that he enjoys certain stimuli much more than he dislikes certain other stimuli.

“I am a hugger. This once would startle folks when they heard about it. ‘Such cannot be so!’ they would shout, and I would reply, ‘Such is so!’. When I was younger, I was quieter and shyer and so my peers were startled that a thing so outward as a hug was achievable with me. I have come to be more outward recently, and so it startles them less as hugging is not an act that seems to strange for me anymore. Sadly, with COVID-19, hugging has come to be killable.”

I found his insight to be very interesting and a bit of a change from what I think the normal outlook is for people on the Spectrum and this belief that it is something that they are all going to enjoy because a lot of them have anxiety and this entire ordeal justifies their need to stay away from people and to stay home. But a spectrum is, after all, a spectrum: So there are going to be Autistics who cherish that sense of contact with their friends and who are going to find it hard to cope with the sudden changes.

This is a very different world and nothing is really going to be like how it was before all of this started. Now is a good time to reflect on what we are going to miss. We tend to take so many things for granted and now
they are all gone and it happened so quickly that we could barely blink and our society has fundamentally changed. I can imagine that this change is going to cause a struggle for Autistics and their parents, carers, friends and family.

Not all Autistics are going to cope with this in the same way. Many may really enjoy this, but there are going to be a lot who are going to miss being near their friends and getting out in the world.  We are all going to cope with this in many different ways.

But the thing that we can all do, and which should unite us, is the plan to stick together.

Even though so many of us need to keep apart, we all need each other now more than ever.

©Nelle Frances 2020