Living on the Spectrum in the Shadow of COVID-19

Photo by Pedro Gabriel Miziara

My life honestly didn’t change that much when COVID-19 hit. At least, not at first. As someone with Autistic Spectrum Disorder, I was already a Social Distancing World Champion. Approach me on the sidewalk? Time to walk in the grass! Crowded parties? No thanks! I’d sit a seat away from my own mother at the movie theater. Now my desire for personal space was enforced by law!

It’s kind of amusing just how many of these world shaking changes are things people on the spectrum have been living with for years. Chat services like Discord (which has begun to drop it’s ‘gamer’s only branding’ since the pandemic began) were already spaces we inhabited to talk about our interests, form relationships, and just have normal social interactions without the overwhelming sensations that can come with an in-person meeting. Many of us already worked from home, and were intimately familiar with the tools that our neurotypical friends and family had to quickly master. I was already familiar with proper handwashing technique after a late-night wiki binge had exposed me to the idea that poop was everywhere, and proper hand sanitation was the only thing that could save me from the fecal menace. What was an abrupt change for many felt more like a slow transition to me. The world outside was in chaos, but inside my little bubble, everything was fine and dandy.

…almost.

I, like many people on the spectrum, am a creature of habit. I seek comfort in routines, and the gentle rhythm of everyday life. Change is terrifying, and in the year leading up to March 2020 I had already forced myself through more than my fair share. I had moved to a new city, began (and lost) a new job, started freelancing, and generally began to piece together a new life. I thought I was approaching something assembling stability, as slow as it was.

If this pandemic has taught me anything, it’s that stability is a lie.

As I surrounded myself in the comforting trappings of routine, the world began to change around me in ways I wasn’t prepared for. It was slow, at first… but it quickly compounded into a snowball of insanity.

The first thing to go for me was, ironically, my favorite social distancing technique: night shopping.

I live near a 24-Hour Walmart. A brand new, state of the art, super bougie Walmart. I, being the socially awkward weirdo that I am, would shop for groceries at bizarre hours just to avoid seeing other people. It was relaxing. I could walk through the toy aisles to look at fidgets and board games without being stared at by a judgy twelve-year old. I could trudge around with my ungroomed hair and gym shorts without worrying about ending up on People of Walmart. I could buy an 8 oz. bag of cubed cheese, eat it all in the parking lot, and no one could stop me! It was a weird, probably unhealthy heaven! But it was mine.

Then, without warning, it was gone. The doors were locked before the sun had completely set. My evening date with an ill-advised amount of dairy was ruined. I’d have to go during the day. In the middle of the great Toilet Paper Debacle of 2020 no less. Needless to say, I was not enjoying this.

This radical new normal also came with new rules. I like rules. Rules provide a framework for the chaos of everyday life. Stand six feet apart. Follow the marked arrows. Wear a mask. I latched onto them like a life preserver, which only made it more aggravating when people around me refused to follow them. I can’t even describe how uncomfortable it is to be walking down an aisle, following all the rules, only to see someone walking the wrong way, mask off, talking loudly on their phone, and getting within inches of you to grab something off the shelves. It triggers the same impulse I get when I see people standing on the wrong side of the yellow line at train stations, or refusing to wear a seatbelt in a car. That intrusive rush of anxiety that says something horrible is going to happen, except this time it’s going to happen to me.

This sort of catastrophic thinking is a part of my particular brand of autism, but anxiety is a common comorbidity with ASD. How could it not be? For people on the spectrum, the world is stuck on max volume. Car horns are deafening, the wrong texture can give you goosebumps, but the worst thing is other people. A lot of people assume that people on the spectrum have trouble understanding and expressing emotion, which is true. However, that doesn’t mean we don’t feel emotion, and it definitely doesn’t mean we don’t feel empathy. If anything, we feel too much. Or at least I do. When other people are stressed, angry, or upset, I pick up on it… and have no idea how to deal with it. It’s bad enough when it’s localized to one person, but the worldwide aura of anxiety and despair is just too much for one to deal with. Whatever a neurotypical person is feeling right now, it’s likely a person on the spectrum feels it more intensely… and without the tools to process it.

It’s no wonder, then, that so many people on the spectrum turn to repetitive behavior and routines; it lets us filter everything else out. You know exactly what to expect. You can brace yourselves for the highs and lows, and find comfort in the familiar. It’s why I play songs on repeat, or look up movie spoilers before I go see them. Being autistic is like riding a roller coaster blindfolded; you can’t brace yourself for what’s coming, so you feel everything more intensely than the other riders. If you ride the same roller coaster over and over, you eventually learn to lean into the curves and grip the restraints at the right time. You might even learn to identify patterns that can help lessen the jolts on other roller coasters, though you can never truly prepare for the unfamiliar. It just so happens that 2020 is a monstrosity born from the depraved mind of a sociopath playing Roller Coaster Tycoon. Good luck bracing yourself for any of it, because it’ll throw a curveball at you when you least expect it.

Oh, and don’t even think about relying on your old routines and habits, because COVID will take those away too. Night shopping was just the beginning. Next, the local attractions all shut their gates. I’m a resident of Orlando, and one of my (admittedly privileged) hobbies was to take a stroll through one of the theme parks every two weeks with my annual pass. My interest in the setting and mechanics offset the normal anxiety I’d feel being in such a large crowd. Well, that had to stop pretty quickly, and I was fine with it… aside from the fact that my main freelancing gig was writing Disney World news. Within a few weeks all the news had become the olds, and I was on unemployment with the rest of the country. Small things I had taken for granted began to become scarce. My favorite restaurant? Totally closed. Taking a walk through the neighborhood? Now it was a game of “avoid the potentially plagued neighbors”. Even my favorite soda seemed to disappear into thin air. I was scrambling to find something resembling normalcy as I spiraled into a deep depression. The worst part was that I couldn’t even be upset about it. Not in any acceptable way.

There’s a phenomenon common among the neurodiverse called the “meltdown”. If you’re the parent of an autistic child, you’re probably very familiar with them. From an outside perspective, it looks like a temper tantrum. A neurodiverse person, even an adult, suddenly begins behaving erratically, even violently in extreme cases. There’s no direction to it. No intent behind it. It’s just chaos. It can be deeply upsetting to watch, but it’s even more upsetting to the individual. Imagine that roller coaster I mentioned before. You’re riding it and everything seems normal, but suddenly switches rails to a completely different track. If you can see where you’re going, you’ll probably be shocked and startled at first, but you’ll adapt to the change once you realize where you’re going. The problem is, people like me can’t see where we’re going. We’re suddenly overwhelmed with new, unfamiliar stimuli on top of the stress we’re already experiencing. Things aren’t going how they’re supposed to. You have no idea if you’re even still on the track. You’re screaming “Stop the ride, I want to get off!”, but no one is listening. When the ride finally ends, all of the other riders are laughing at you for your panicked reaction, while you slink off in shame to the churro cart. You were never really in any danger, and yet fight or flight mode was in full gear.

That was the problem. I wanted to be upset about what was happening. I wanted to cry. To scream. I felt like my mask was suffocating me sometimes. I wrapped myself in weighted blankets. Ate junk food. I bought a tent to cover my bed just so I could have an added layer of security. I was a mess, but at the same time I knew I couldn’t really be mad. It wouldn’t change anything. If anything, it would make things worse. I’d watch those early protests where the most obnoxious people in the country would march on their state capitals demanding haircuts while my bangs felt like they were going to poke out my eyes, and I’d feel a simultaneous wave of sympathy and revulsion. But I couldn’t be mad. Not because of some sort of social pressure; I was alone in my own house with my family, they were lucky I wore pants. I couldn’t be bad because logically, empirically, I knew all this was to prevent something much worse. That if those protestors succeeded and forced the state to open early, thousands would die. Being autistic means straddling the line between logic and irrationality, and while the spectre of death was a great motivator, it couldn’t change how I felt.

Still, I’m one of the lucky ones. My financial situation, work, and habits helped soften the blow. Years of therapy and medication have helped teach me how to manage my symptoms and avoid erupting into a meltdown. I have what many psychologists have defined as Asperger’s syndrome, which means that my language and reasoning abilities are relatively unimpaired. I’m able to communicate and care for myself. Many people on the spectrum aren’t so lucky; individuals with more severe symptoms require specialized care, and often live in group homes where it’s difficult, if not impossible to maintain social distance. Others rely on caretakers to feed, dress, and bathe them. In a study by the Simons Foundation Autism Research Initiative (SFARI), 48% of autistic women and 32% of autistic men surveyed reported a disruption in essential services and therapies. 63% of school-aged (6–17 y/old) children also experienced severe disruptions in care. These people have been cut off from their families, denied essential services, and have been essentially left in limbo for much of the year. If a shortage of Diet Dr. Pepper can send me into a depressive spiral, imagine what someone in a crowded group home with limited access to care must feel like.

It’s strange that what felt like a boon in the early days of the pandemic quickly turned into a detriment. This past year has revealed so many problems with how we treat people with disabilities. It’s shown us just how fragile the threads binding us to stability really are. For every feel-good story about a community coming together to make sure a little girl has Spaghetti-Os, there are thousands of untold stories of people on the spectrum who have lost access to care, or who have found themselves trapped at home with families that don’t understand them. People whose coping mechanisms, whether they’re as simple as a can of soda or as meaningful as regular contact with a loved one, have been ripped away. We’re all just passengers on a runaway roller coaster, uncertain of when it will finally end.

The world is slowly starting to reopen, and people have begun to carry on like nothing happened… but as case numbers continue to rise as winter looms, I can’t help but worry. When the next wave crashes… will we do better? Will we take away the lessons from all of this and move forward? Will we do better by our less privileged peers? Will we… will I be able to withstand the stress of living through the next wave without the things I cling to to stay sane? Or will those on the spectrum end up as just another silent victim of this pandemic?

This is a pretty dark turn for an article that began with social distancing jokes, but it’s a reality that myself and others on the spectrum have had to face this year. I might mask it behind quips about soda and cute roller coaster metaphors, but I am terrified about what is going to happen next. I think we all are; ASD just adds an extra layer of hellishness to the whole situation. If you’re a neurotypical person reading this, all I can ask you to do is be patient. We’re not expecting you to be able to understand, but even the smallest show of support can mean the world to us. If you’re looking for resources on how you can help people on the spectrum in your life, visit the Autistic Self Advocacy Network; a not-for-profit for the neurodiverse that’s run by the neurodiverse. There are resources there that can help make all of this a little easier.

Otherwise, all we can do is what we’ve been doing; put on our masks, wash our hands, stand six feet apart, and silently judge people who don’t cover their noses. It might not be much, but it makes me feel better, at least.

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