COVID-19 & Autism: Keep Calm and Self-Regulate On

by Teresa Hedley

~ Helping people with autism build new routines in the face of pandemic upheaval.

Erik has a cold sore.

COVID-19 has arrived in our Vancouver Island home – just not in the way you would expect. Its imprint is a scab, tiny and red, innocuous except for what it represents: autism and upheaval.

Autism or not, we all feel it: the gnawing uncertainty, the absence of routine, order, certainty, predictability and calm. In a few short days, our routines have fallen away. We adapt by creating new, updated versions – each day.

For most of us, this is tough but doable: we work from home, we connect virtually, we shop at strange hours, we exercise singularly. We adapt and we carry on.

For people with autism, environment calls the shots and shapes behaviour. What we see in those with autism is almost always a reaction to environment. Behaviour is communication. Pacing and clenching and humming and rocking are all ways of saying, “This is excruciatingly difficult for me.” And we know it: living in a pandemic is confusion, concern and chaos without parameters. Molten and timeless. Yes, this is really hard.

Now imagine you have autism.

Fifteen years ago, when my son Erik was first diagnosed, I was told to multiply by ten, and then I would begin to understand my son and the intensity of his emotional upheaval. In the last two weeks, I’ve been multiplying a lot, trying to imagine what it must feel like to lose your pillars: order, routine, certainty and structure. I cannot.

“COVID-19 pulled the plug on my life,” says Erik, now 21. “I feel lost and drained.”

While self-isolation, social distancing and copious hand-washing are the new slew of must-dos, for families like ours living with autism, there is yet another cornerstone: self-regulation. If you can’t change your environment, you’re going to have to adapt to it to survive.

“Erik, you can’t control the news headlines, but you can control how you react to them. You can take charge of your reactions – and your actions.”

He brightens, “Like Grampa always used to say, ‘It’s not what happens to you, it’s what you do about it that matters most’?”

“Exactly! I see it like this: pandemic adaptation via self-regulation. We’ll make you a battle plan!”

He looks at me and cocks his head. Mom is up to something.

“We’ll call it the “Things I Know; Things I Might Be Feeling; Things I Can Do” pandemic plan. If you can see it, Erik, you can do it. We’ll have notes and sketches, you know, explaining your options.

If I have learned something throughout Erik’s childhood, it is that he learns visually. To catch a fish, you need to think like a fish. To connect and reach someone with autism, you need to speak their language. It is visual.

“Words float and evaporate like they didn’t even happen,” Erik tells me. I need to make this tool something he can see, something orderly and something practical.

He sits taller. Visualizing this chart, Erik feels hope. Like a plant watered, he feels a shard of control amid the confusion.

I disappear and return an hour later, plan in hand. We take a look at the three columns, and it strikes us that what we have is a logical: What? So what? Now what? Process. It is cause, effect and action.

“This will be your blueprint, Erik. Mine, too,” I tell him. We go over each column, and I note the physiological effect on him: his pupils enlarge, his face softens, his shoulders relax.

“This lifts me up!” he says, glancing at me. “I love this chart!”

And I love the effect it has on my son. What’s good for Erik is good for us all.

It is said that when one person in the family has autism, the entire family has autism. As a family supporting and learning from Erik, we know it to be true. “Emotion is contagious,” writes Malcolm Gladwell. So, too, is reaction. As a family, we model how to react and how to cope. Erik has a pandemic plan, but he also has a family showing him how to live the plan.

Back to the paper in Erik’s hand. His eyes are drawn to the sketches under “Things I Know”. One shows the two curves we have all come to know: the steep one and the flattened one, the reason we are all holed up in our homes.

“I get it now,” he says to me. “And the number 19… I never knew what that meant either. Now I do.”

“And this,” he says, pointing to what looks like a ball with spikes and nodules, the corona virus magnified. We all recognize that image, too. What Erik likes is that it looks like a crown. “Now I get it! Coronated, like a crown!” To see it is to understand it.

The visuals are like Velcro. They stick. While I was certain I had explained much of the first column, “Things I Know”, over the past week, his reaction told me that my words had not hit their mark. Teflon. Sliders. Too many words, too quickly, had floated off. Evaporated. But the sketches connect. Bullseye.

The second column – “Things I Might be Feeling” – is striking for its weightiness. Many of the words are prefixed by “un” and “dis”: uncomfortable, unsettled, uncertain, unhinged, untethered, unstructured… disbelieving, disorganized, disappointed, disconnected. All of the words are heavy. Hard to manage. Weighted.

“We’re all feeling these things, Erik. What you’re feeling inside is absolutely normal. It’s good to talk about these feelings and to realize you aren’t the only one. And then make a plan to move on. To balance the heaviness with positive action.”

I allow my words to settle. It is obvious to us both that “what we do about it” is truly what does matter most. It is Erik who speaks first.

“And to create great?” he suggests, eyes bright. Create great is an expression we coined a few years back, a deliberate attitude toward life we decided to embrace and try on.

“Yes! Bravo! You’re right. To purposefully do things that make you feel good – like kayak or go for a picnic… watch the sun rise… ride your bike… eat your favourite food, watch your favourite movies, things like that. Create perfect days during these uncertain ones. Elevate this. Take charge.”

I discover him in his room a few hours later. He is hunched over a binder, something we call his visual resume. He is beaming.

One suggestion under the third column, “Things I Can Do”, is reliving memories and finding comfort in photographs. But what I discover is an effect beyond comfort. In these pictures, Erik has found himself, his lost identity.

COVID-19 stripped away his routine, his roles, whom he was. By looking at pictures of himself on his college campus, volunteering as a cameraman and reading to young children, he begins to feel himself again. Seeing is believing.

“These pictures,” he says, glancing up, “these define me. They tell me who I am.” Like Peter Pan stitching on his shadow, Erik is recovering his identity through photographs. Reconnection via visuals.

Erik could be falling apart. But he is not. He is building himself up instead, strategy by self-regulation strategy. “Erik, look at you… You’re the poster boy for ‘keep calm and self-regulate on’!”

He smiles his shy, dimpled smile.

While COVID-19 is escalating alarmingly quickly, Erik’s cold sore is going away.

About the Author: Teresa Hedley and her son Eric have co-written over 20 articles for Autism Ontario’s Autism Matters Magazine.  This mother and son series aims to build resilience in children with autism and the people who support and learn alongside them.  They recently released another article that describes how they are dealing with COVID-19 which they have titled “A blueprint for managing the “floaty” pandemic days.”

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 scheduled for release in October this year and is available for pre-order on Chapters Indigo. Wintertickle Press will also publish a companion toolkit.

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