What's Not Allowed? What Living in a Pandemic Has Taught Me About Autism

They say that in order to understand something, try it on. Step into its shoes. Wear it for a while; walk a mile in those shoes, and then you will know, really know what it is to be something else, someone else.

I've tried to do this with autism. I've tried to be my son, Erik, to see the world through thirsty, inquisitive eyes, and through guarded, anxious ones, too. But until now, I've been wearing one shoe at best. I've glimpsed but I've only skimmed the surface. Up till now.

March 11, 2020: the world pulled off a remarkable switch up. We find ourselves plucked from everything we knew and thrust into a bizarre sci-fi drama where uncertainty and distance are the threads that bind us.

We have an unwanted visitor amongst us, and it may be anywhere: on that store shelf, lingering on that handrail, or maybe hanging in the air between you and me.

We live according to numbers now. Six feet between us. 925,000 infected world-wide. 627 deaths in Italy today. 587 in Spain. An 18% increase. Grocery stores close at 6:00. Only one package of toilet paper per household. Three packs of pasta. An update at 4:00 p.m. Death toll by country. COVID-19. Even the name is a number, a remnant from last year. Everything is carved in numerals, in facts. Digestible and yet unfathomable. Unpalatable. What? Wait? This can't be happening. This is not the way 2020 was supposed to go.

The only thing we can count on is change. Today's rules are not tomorrow's rules.

This is what it is to be Erik, to live like Erik, to feel like Erik. To have autism. To fear change. To crave predictability. To need certainty. To create order. To live on high alert. To perseverate and to review the facts again and again and again, because repetition is soothing. Repetition makes sense of the nonsensical. Not only do I understand my son at long last, I have become him in the past two weeks.

Now I finally know.

I know why Erik does what he does because I do it, too.

And I know that what he does is not a choice; it is a reaction to an environment that is perplexing and changeable and inescapable. I know it: I am reacting just as he reacts. At long last, I feel it. To feel is to know. Immersed in a pandemic, I become Erik. Behaviour is communication and knowledge is power. It all makes sense now. So does autism.

As a toddler, Erik's speech was delayed, but when it came - abruptly - one day at around age two, it emerged as a question:

"What's not allowed?"

I remember whirling around, astonished to hear words I understood. And then to discover the source of the curiosity, a sign at the entrance to the playground, filled with red circles and slashes: no littering, no loitering, no skateboards, no dog poop.

My son was puzzling out his young world, trying to figure out the rules.

Now, immersed in a pandemic, I do the same. In fact, I marvel at the evolution of what's not allowed, and I think of Erik as I recap the new normal with my husband each day over coffee or wine or a loop around the neighbourhood.

"Today… red arrows taped to the grocery store aisles. You know, like those IKEA arrows. One way traffic only. Last month we were encouraged to bring our own shopping bags. Now those aren't allowed inside. It struck me today that we've become like Erik, rule hunters and gatherers. And that we find ourselves smack in Erik's what's not allowed world. Rules 'r us."

Last night I slept nine hours, unheard of for me. But living on the edge of reason will do that. High alert is exhausting. It will throw a person into the deepest of sleeps. Erik generally sleeps ten hours a night. Now, twelve. I used to think "really?" Now I know why.

I am constantly hungry. Uncertainty will do that, too. It will fuel anxiety, burn calories and shed pounds. I eat for comfort, but mostly for energy. Erik is forever hungry.

"Because he is constantly trying to figure out the world, the rules..." observed a friend.

Living with chronic anxiety, unpredictability, with rules morphing, and with certainty shrinking like a spring thaw, one feels helpless. A pandemic is beyond what one can control, so we control what we can. Hence, the hoarding and the stockpiling: the toilet paper, the pasta, the wine, the wipes and the masks. We do what we can do, because everything else is out of bounds.

Since he was small, Erik has adored tidying up, creating order, lining up toys in impressive rows and maintaining a spotless bedroom, show home worthy. Nothing is out of place. As I clean and sanitize and sort and make things right, I become him, creating order in a world without it.

Each day I wake up and I do the same things: check the weather (can I escape my house today?); check the headlines; check the pantry; check in on my mom; check my emails. Oh yes, I also check the calendar. I've lost track of days. They're all the same, so I check that, too. I live on repeat because repetition is security. I am creating routine where none exists. A new rhythm. Adapt or succumb. Erik lives on repeat, too. Now I know why.

Repetition is reassuring.

When Erik was little, he used to run in circles shouting his pet phrase for days, weeks even, like "It's a lake!" Running and chanting delivered such joy. Groundedness. For the rest of us, it was a background thrum, a family soundtrack. I used to marvel that Erik never grew tired of the lake or whatever the current sound bite was. But I also understood that Erik knew what he needed.

Last night, we watched two episodes of The Crown on Netflix, but the thing is, we've seen those episodes before - last month, back when the world was normal. Experiencing the familiar in the throes of chaos is calming. Repetition is a godsend for Erik and now, for us.

Our days have been filled with numbers, both reassuring and alarming. Numbers provide structure and context, but mostly, a grim reality and perhaps necessary foreshadowing. Numbers tell me what I need to know and how I need to be. Numbers help us navigate this unfolding reality; tallies are the torches illuminating the way forward.

When Erik was seven, he used to run laps and clap and count down to the numbers on the microwave as they worked their way to zero. While at first this perplexed us, we soon understood: numbers were something Erik could depend on - count on, as it were. Numbers are predictable, honest. In numbers we trust.

Bring on a world-wide pandemic, and numbers become the matrix. Numbers are Erik's blessed scaffolding, too.

Self-regulation has become another coping strategy. When you cannot change your environment, and when environment trips you up, change your reaction to it. So I do: I walk more, hike more, write more, kayak more, garden more and I notice more.

Living in a new world order has forced Erik to dust off his self-regulation toolkit and call up trusted strategies. I spy him checking the suggestions we've written down for him: make a list to structure your day; go for a walk; listen to music; pull weeds; rake the garden; cycle; kayak; help chop vegetables for dinner; paint; tidy shelves; watch home movies; look at family photo books; use a weighted blanket. Self-regulation has always been Erik's lifeline and anchor. Now it is mine, too.

Mindfulness is no longer vague and elusive. Because so much has been taken away, we rejoice in what remains - simple joys like singing from balconies. We notice and appreciate the ordinary because that's what matters. I thank my immune system; I take big gulps of covid-free ocean air, and I think about connecting in person again and doing what I want, when I want. And how wildly decadent this will all feel.

Erik has always noticed the small stuff.

"I love the way the ferns are backlit at the edge of the forest," he said to me one day.

And so they were, illuminated, brilliantly emerald. But only if one noticed. Erik does. I do now, too. When you can't make sense of the big stuff, you appreciate the little left-overs.

Rules. Sleep. Hunger. Order. Repetition. Numbers. Self-Regulation. Mindfulness.

There is more, but this is enough to help me to know, to feel what it is to be Erik, to have autism, to navigate an uncertain, perplexing, ever-changing world.

It is said that we are all somewhere on the autism spectrum. Now that our environment has tilted, so, too have we - further along the continuum, meeting those with autism on their own turf.

Living in a pandemic means living a life bound by numbers, evolving rules, uncertainty, change, tidying up, stocking up, self-isolation and self-regulation. Because this is what we need to do to survive.

As for my son and autism? Now I finally know.

It took a pandemic to help me walk that mile.

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About the Author: In addition to parenting an adult son with autism, Teresa Hedley is an author, advocate, educator and curriculum designer. Her memoir, What's Not Allowed? A Family Journey With Autism is available for pre-order on Chapters Indigo. Wintertickle Press will also publish a companion toolkit.

Teresa and her son Erik co-authored a twenty-article mother-son series, "I Have Autism and I Need Your Help" for Autism Matters magazine.

Pathways to Potential: Parenting Children and Youth With Autism, an online parenting program designed by Teresa for families living with autism, will be available online in 2020.