Pros and Cons – Quarantining on the Autism Spectrum

As a person who thrives on predictable routine and structure, the last six weeks for me have been pretty rough. I’m an adult living with Aspergers Syndrome, an Autism Spectrum Disorder, rigidly obeying self isolation due to the UK’s Coronavirus lockdown. I’m perhaps better off than many, I’m not immune compromised, and I already had five years experience working from home under my belt before the lockdown came into effect, but I certainly have had to make some adjustments to life in quarantine, many of which are unique to quarantining on the autism spectrum.

Life post quarantine is different, and as someone who struggles to adapt to new situations I’ve had a bit of a rough time adjusting to what life is now, and what it will be for the months to come. Not every change is negative, some changes I would love to see stick around long term, but many more have been tough to handle.

Pro – Mandatory Physical Spacing in Public Spaces

I have never been great at handling physical contact with strangers, or being part of a crowd. I obsess over sensory information, with supermarkets being a real hotbed of information that my brain fixates on. You’ve got people moving erratically, moving past each other, leaning over each other, with the sounds of florescent lights, humming fridges, and a hundred different conversations all culminating to become quite intense.

Honestly, Coronavirus distancing measures at supermarkets the past six weeks have been a real relief for me. When queuing to enter the store, people have tape marking out how far apart to stay, giving me room not to feel crowded. Once inside the store, there are far fewer customers to deal with, because the number of customers being let in at a time is reduced. I don’t have to think about if my facial expression is correct or not, because of my face mask. There are markings on the floor telling customers how to move through the store, and when it’s my turn to pay I don’t have to rush, as customers know not to move ahead until I have finished up.

Shopping trips are quieter, and theoretically more orderly, which works really nicely for me. Sure, sometimes customers will ignore these new rules, and a little part of me stresses about proper following of rules, but in general shopping has been a less overwhelming experience, from a distance and rules point of view.

Con – Unpredictability of Routine

Prior to the UK Lockdown starting, my life had a pretty stable routine. I would get up at 8am, get dressed at 8:30, head out into town for a walk and some hot food, head home to eat breakfast, say goodbye to my partner as she left for work, then get into my own work routine. I would work on emails and article pitching in the morning, got for a walk at lunch time, come home to write an article in the afternoon, do the washing up 30 minutes prior to my partner getting home, then go for a run or stream in the evenings.

I know the UK Lockdown isn’t as drastic as some, in theory I can leave the house once per day for a walk, and I work from home anyway so very little of my routine fundamentally needed to change, but it’s the little changes to my day that are throwing me. My partner is now working from home, so I no longer have her closing the front door as a mental marker for when work starts in earnest. Without her getting home from work, I no longer have a firm mental signal that work is over, and the washing up should be done by now. I can’t start my day with a walk AND take a walk at lunch AND go for a run after work, and if I need to walk to the shops I can’t do any of the prior three. I’ve found myself not doing any of the walks that used to break up my day into segments, because of a paranoia that I might have to go to the shops, but have already done my one daily trip outside. I get anxious that I will walk to the shops, and they won’t have whatever I was going for, and I’ll have used my one daily exercise walk for nothing.

For many, giving up a few daily walks, and not hearing someone leave then return to a house wouldn’t make a big difference to structure and routine, but this is a routine years in the making, and to suddenly have it change has led to repeated work days where I don’t get things done properly because the thing that makes me remember it’s time for the next part of the work day simply doesn’t happen. I need predictable consistent markers to make my routine work, and without them I have spent weeks feeling needlessly adrift and distressed.

Pro – Not Having to Shave as Frequently as a Trans Woman on the Spectrum

As well as being on the Autism Spectrum, I am a trans woman, and it’s an undeniable fact I have to deal with facial hair growth. I went through a testosterone based puberty in my teens, and facial hair is just something I have to deal with now. However, I have really bad over-sensitivity to the sensation of shaving, no matter what techniques I try to make the experience smoother. Sometimes I’ll pluck my face if I can bear the pain, and I will shave before seeing people or if it reaches a state that bothers me, but daily shaving isn’t always viable for me. The issue with that is if I go out with stubble, I am more likely to get misgendered, or to feel anxious using spaces such as women’s public toilets etc.

Some days, I just cannot manage shaving my face, because of sensory over-sensitivity, and honestly face masks have been a godsend in this regard. I can cover my face and neck, improving my odds of being gendered correctly if I have to go to the shops, without having to deal with the discomfort I experience when shaving.

Con – With Events Delayed, My Brain Has Nothing to Organise and Plan for Properly

Beyond the short term changes to routine, I have also really struggled with the loss of long term points in the year to look forward to, and the moving of those markers into next year and beyond.

When I have a social event coming up on the horizon, I tend to obsessively over plan for it, because social situations are very draining and I need to plan obsessively to avoid stressing out. I understand why a lot of events this year have had to be cancelled, but a lot of them I had already planned for long in advance, and their cancellations have caused a weird lingering anxiety to stick with me.

I was meant to go see my favourite band play this summer, and was already planning travel, and accommodation, and when to arrive. I had been planning to go to a festival in the summer, and had been planning out renting a van, and outfits, and other aspects of the trip. I was meant to have a book releasing this year, and had already been planning printing art, and how to present those art prints, and which conventions to bring the book to for signing events, and purchasing materials to present the book at events. I had a convention I was planning to attend with friends, and had already been working on costumes for it. I was meant to change my birth certificate gender this year so I could get married.

I know all of these events will still happen, simply delayed, but I’ve spent so long obsessively planning for them that their hiatus is weighing on me, causing me needless anxiety. i know logically I should just put those thoughts aside and start planning again once this is all over, but no, my brain insists on obsessively planning for events now well into the future. It’s all the obsessive plan management without the events themselves showing up to give the anxious planning an end point where it will settle down.

Time feels weird and I am obsessively planning for things that are so far away I can’t really plan for them, and even if I could there is no guarantee those plans will not change again, and it’s really draining. I don’t have anything to micromanage plans for in the short term, and that isn’t helpful, I need short term things to plan for to feel like I am in control of my life. I have a pile of paperwork that I can’t post off, and dress measurements I can’t send off, and costumes I can’t order parts to finish, and my brain is screaming at me to finish those tasks, but I can’t, and that’s stressful.

Pro – Reduced Interactions with Strangers

One of the things i struggle with, living on the autism spectrum, is the rules of social interactions with people I do not know. How much conversation is appropriate with your postman? How are you meant to greet a food delivery driver? Is it okay to cross the road to avoid walking to near a stranger, or will that be seen as rude? If a total stranger smiles or nods at me, am I meant to respond? How much am I meant to respond honestly to questions from a shopkeeper I don’t really know?

One thing that has been really helpful for me during the Lockdown is that the new rules regarding social interactions mean i feel a lot less rude avoiding interactions where possible. Delivery drivers will drop things on my door and walk away so I don’t have to interact with them, I can cross the road to avoid other pedestrians without being seen as rude, and if I don’t interact with someone more than necessary it’s considered understandable.

Honestly, I could really go for us keeping this aspect of life right now.

Con – Everyone Else Working From Home is Disrupting my Routine

My fiance is currently working from home, and I honestly couldn’t ask for someone better to work from home with. We don’t disturb each other, we look after each other, and things at home are lovely. However, it’s people outside my home who have been a real issue during this Lockdown.

One of the joys of working from home for me historically has been the fact i can control my sensory surroundings. The world is usually quiet on my residential street during the week, because everyone has gone off to work or school. i can quietly play some music on loop, and get on with my work undisturbed. However, my neighbors being home during the work week has led to a lot of sensory inputs I can’t drown out, that make focusing on work challenging. From one neighbor deciding to drill near my office walls, to a neighbor blasting their music full volume every day in the garden while the do yard work, another neighbor deciding now is the right time to work on repairing their roof, and another nearby person using power tools in their garden, I have found my previously predictable sensory soundscape during working hours is frequently disrupted without warning, making focus difficult.

Pro Maybe? Con Maybe? – Ahhhhh, Facemasks, Gloves, and Obsessive Germ Phobia

So, I go back and forth on this one. O have always been an obsessive hand washer, one of the many joyous obsessive tendencies I have bundled in as part of my aspergers diagnosis. I get really paranoid about sensations regarding my hands, I constantly think my hands are dirty, and I panic a lot about keeping my hands clean properly.

On the one hand, this virus has given me free reign to wear nitrile gloves when leaving the house, on days I am really anxious about my hands. I know they’re not a replacement during a pandemic for hand washing, they need to be thrown out to spread contamination otherwise they essentially become a new unwashed pair of hands you use to transfer germs around. but, as an every now and then measure, they really help me feel less anxious, and them becoming more acceptable to wear is a pro. Same for the mask, there is some days a real comfort and lessened paranoia in being able to wear a mask around other people.

However, these also serve to remind me of the presence of the pandemic. They’re physical reminders that all my paranoid thoughts about disease being invisibly ready to kill me are coming true. It’s comforting being able to protect myself, but the protections remind me that the world is terrifying right now. Still not sure if I feel more or less comfortable as a result.

There you go, that’s a handful of elements of living through this chaotic situation that have had interactions with my living on the autism spectrum. Looking forward to the future, I’ve seen cinemas consider reopening with empty seats between customers, supermarkets keeping their visitor numbers capped, and public transport maintaining distance rules alongside better enforced enter and exit procedures, which are all things I really wouldn’t mind being permanent changes. I find life easier to live quieter and with more space, and I hope that doesn’t go away when this ends.

Categories: Disability

1 reply »

  1. I have autism so I can definitely relate to parts of this.

    I don’t plan for big events so i’m not too bummed about concerts and whatnot being delayed, especially since I never have the money to go anyways(plus i’m too paranoid about them turning into another mass shooting like that one in Las Vegas). I live with my parents and I’ve been spending most of my time in my room on the computer or on my TV for over a decade now already, so once things got crazy, my routine barely changed at all. Only real difference is now my mom works from home, and honestly i’m OK with that. I also don’t mind not going out to public places, as I never really cared for doing that even before COVID, I was glad to stay home for my birthday and order takeout and I was fine with only getting gift cards as that’s what i’d been asking for for my birthdays and for Christmas for many years now.

    Only downside is not being able to go inside Gamestop and trade my used games for new ones, but i’m still willing to order online and make a special trip there to get Last of Us 2. Can’t begin to describe my excitement for that game, reading those leaks didn’t diminish my hype one bit, if anything it shot it straight through the roof now that I know the story is taking some real genuine risks and not just retreading the same ground covered by the first game, I have a very good feeling it will end being my game of the year.

    Fortunately our house is a good distance away from other houses, so neighbors aren’t an issue for me(the one house that is next to our property has been sitting empty for months now as those people moved away)