The Little Autism Pandemic Battle Plan That Could

The rest of the story is often the best story.

Once upon a pandemic—March 2020, to be exact—a plan was hatched. It was a simple plan, a messy blueprint, sketched out in haste on a single sheet of paper: three columns, three layers of comfort—and solutions. Maybe because of its simplicity, it was an effective plan.

The battle plan was designed to do one thing: to step between COVID-19 and autism, to calm and organize my son Erik's anxious brain.

And this brain-tamer worked: it allowed Erik to manage his feelings as our world became more complex and more unrecognizable. This plan was not meant to reschedule his day; it was meant to prime his mind and diffuse anxiety. It was about managing mindset. It was also about showing my son respect by making the pandemic swirl concrete, offering him a way to cope.

“This bridging between conceptual and concrete is what you do so well for Erik. You place your mind in his mind. You make things real for him.” Kim Barthel

Erik’s reaction was telling. He couldn’t stop smiling. And he couldn’t stop thanking me. He carried that piece of paper around like a life saver, because for him, it was. This reminded me of a time when he was younger and I had made him another such list to manage another crisis.

"I really like the list,” he had told me back then. “It prevents me from pacing."

Roll Back to March: Autism Pandemic Battle Plan

The pandemic battle plan was a way for Erik to take back some control in an unpredictable world that offered so little of it. Since much of life exists in the mind, this seemed like the ideal place to plant seeds, to cultivate calm and order.

So we took a piece of paper and we divided it into three columns.

Column One: Things I Know

We brainstormed all that we knew about the pandemic. We updated as we learned more about COVID-19 and how, in the words of millions, to "stay safe."

Most importantly, we drew.

"People with autism," says Temple Grandin, autism's most recognizable ambassador, "we think in pictures."

When I interact with Erik, I hear Temple: the language of autism is visual. So I draw and I encourage Erik to draw. To connect with autism, speak the language. Brainstorming all we knew was the first step in taking back control. Knowledge is power - the power to do the right thing, knowledgeably.

Column Two: Things I Might Be Feeling

In a game of Rock Paper Scissors, if knowledge is the rock, self-awareness is the paper enhancing that bedrock. As we talked, the emotions we felt spilled out, and to our surprise, they were all heavy, daunting, difficult emotions. And there were dozens of them, words like shocked, helpless, disorganized, disconnected, untethered, restless, uncertain, sad, worried, off-balance, overwhelmed and exhausted. And they just kept spilling out.

I'm not sure why the ominous outpouring came as a surprise, but it did. It wasn't until we took the time to write down what we were feeling that we realized how much heaviness we were bearing and processing. Writing is cathartic, and it is also crystallizing. We looked at one another and exchanged a silent, Who knew?

The second effect quickly followed the first.

"You're feeling all of this, too?"

That was Erik. He hadn't realized that these emotions were felt beyond him, held and experienced by all of us, a universal, human—and normal—reaction to the unimaginable. And with this realization came relief—a flood of it, from him.

"I'm not alone. My feelings are normal."

Yes, Erik. And no Erik: you never are alone.

A Quick Aside: Autism 101

I have been told that to understand how something feels from the perspective of autism, multiply by ten. Everything is ten times more intense, ten times felt, and ten times more difficult to manage. To understand my son, I multiply.

There is something else: those with autism have a hard time identifying their feelings and reading emotion in others. By writing down, drawing and talking about each reaction, we are holding up a mirror.

"Here is what you’re feeling," is what column two tells us.

Liberating those heavy emotions felt good.

Column Three: Things I Can Do

"And now, the scissors, Erik. The way forward."

If knowledge is the rock, self-awareness the paper, then surely, solutions are the way we cut through and make our way forward. In a world of "what?" (column one) and "so what?" (column two), column three is our "now what?"

In life, we all need a column three: it is how we climb out of columns one and two. It is how we cope, and eventually thrive.

"We always need to be positive, purposeful and practical."

I told Erik that years ago and he dishes it back up, sounding a lot like me.

In column three we listed everything we could do to counterbalance the heaviness of the information and the accompanying emotion.

"Column three is soul food," I told him. "Whatever is good for your soul, do that."

So we listed indoor and outdoor activities, a self-regulation buffet: biking, hiking, kayaking, beach walks, gardening and even vacuuming. Erik likes vacuuming. "And how about dusting?" Erik added, half joking but mostly not. Erik also loves dusting. He likes to tidy up to keep things orderly. I added watching movies and home movies and looking through pictures. We both love photography, videography and to review the past. There is also the occupational-therapy-type options, things like deep pressure via weighted blankets, hand fidgets (squeezables), music, hot tub and sauna time, meditation in quiet, dark spaces.

"These are a few of our favourite things!" smiled Erik, sounding very Sound-of-Music-like.

"Yes," I chimed in, "and then you won't feel so bad." Touché. And thank you, Julie Andrews.

It Started in Low and It Started to Grow

It was then that our messy plan—one I had always intended to copy over but never did—began to sprout legs. Like a tadpole sporting bumps and then magically, appendages, our simple plan began to be shared and expanded. There was plenty of room for tailoring, especially when it comes to soul food. And that's what happened. People personalized the third column and decided what their self-regulation would be. In restoring balance, they were taking control of their mind, one column at a time.

The blueprint is deceptively simple: counterbalance the heavy with light. Obvious, right?

But the beauty is in the realization that we need to purposefully do this: take the time to organize the chaos, write it down and take control. As my father used to say to me,

"Write a list and free your mind."

And we need to keep doing it, to keep adding to what we know, acknowledging those emotions —and to keep feeding ourselves. This recipe is not a one-time thing. It is continuous. Like most things in life, it is a process that needs to be revisited and refreshed and reapplied to be effective.

Why? Because the pandemic, as is stretches out relentlessly before us, is also a process, a seemingly never-ending barrage of adjustments and precaution and prevention. "Never-ending" has an effect that is both cumulative and compounded. It builds and then it grows upon itself. And that magnification is both exhausting and draining. It feels like defeat. Hence, pandemic fatigue and hence, the need to fill ourselves up. Continuously.

Supporting the Mental Health of Children and Teens with Autism During COVID

In May, Erik and I were invited to be a part of a webinar series hosted by Ontario Member of Provincial Parliament, Jeremy Roberts. Our segment, outlining the pandemic plan from a mother/son perspective, would be paired with a presentation by Toronto's Dr. Jonathan Weiss, Chair in Autism Spectrum Disorders Treatment and Care Research.

Dr. Weiss led with a COVID and autism snapshot: What are those with autism feeling during COVID? What are the stressors caregivers are experiencing supporting family members with autism?

In describing the effect on caregivers, the capacity to cope and suggested strategies, Dr. Weiss emphasized that one size does not fit all. Each family is unique, and the variables at play are unique to each family. Distinct circumstances aside, the interplay between three words is key: demand, capacity and meaning. How well we manage (capacity) a crisis (demand) depends upon the meaning we attach to the crisis. My father-in-law used to say it like this:

"It's not what happens to you but what you do about it that matters most in life."

Erik and I picked up the thread. We called our portion of the webinar "The View From Our Shoes." As we described our reaction—the battle plan—Erik and I highlighted the regulation strategies that worked when Erik was a child, and now, as a young man with more self-awareness. In this way, the webinar version of the battle plan was expanded to feature a menu of choices, depending upon age, developmental stage and need.

AUTISM AND COVID-19 WEBINAR: "Supporting the Mental Health of Children & Teens with Autism during Covid 19" featuring Dr. Jonathan Weiss, Teresa Hedley, & Erik Hedley.

To view the webinar, paste this link into your browser:

https://m.facebook.com/story.php?story_fbid=3285843164973528&id=2019540774937113

Perfect on Paper is Not Perfect in Practice

So what worked over time? What resonated with Erik? There is often a gap between expectation and reality, between what strategies you feel certain will hit the mark and what actually becomes the default.

Interestingly, with the stripping away of routine and structure, Erik told me he felt like he had lost himself to this pandemic.

"I feel like Peter Pan," he told me with a half-laugh, "like I need to sew my two selves back together."

He has both tamed his brain and found himself these past eight months: in nature, in solitude and in visuals.

Erik's Top Three Calming Strategies

1. Nature Nurture - Walking, biking or kayaking calms and soothes Erik. The ocean quiets or excites him, depending upon the day. The forest offers filtered light and a hushed green tranquility.

2. Man Cave - Quiet time and space to balance the unpredictable pace is important to Erik; his walk-in closet is like a time capsule with pictures, videos and mementos from the past.

3. Picture Perfect - Erik tells us that life context is important to him and that he redefines himself via pictures and videos from the past. Home movies and favourite movies and Netflix series are all comfort companions.

In observing Erik's top go-tos over time, I learn more about my son. In order to function best, he needs to immerse himself in the big picture (nature); he needs a lot of private time to balance public time (quiet space), and he needs visuals to help define himself (context via family photos and videos).

"I like to look at pictures from the past and watch home videos to remind myself of the way things used to be. I go back to simpler times when life becomes complex." Erik

Why does he do what he does? What is the need that is being filled? Understanding the reasons for his choices helps me to understand him as a person. It helps me to tune in to what makes him tick.

What's Good For Erik is Good For All

In October 2020, the battle plan was back, fleshed out and stretched out, this time on national television. The invitation was extended by CTV's Your Morning, and the viewer reaction was telling.

"Timely information presented in such a personable way...the plan/chart...was pivotal for us." Judy Johnston

Click on the photo, below, to access the CTV Your Morning segment:

Why did the plan resonate with viewers outside of autism?

1. Tilt. Because when the environment tilts, we all tilt with it. In March, it was about shock and absorption and an about-face. It was a short-term change. Now it’s about pivoting and carrying on: it’s a long-haul commitment.

2. Tackle. We have been forced to live and play and connect online. Column three invites us to get out of our heads, out of our chairs and to tackle the tough emotions by regulating our bodies.

3. Time. We can do anything if we know how long? But we don’t know how long. So we focus on what we do know and can do: self-regulation.

"There is an endless stream now of rules to survive Covid…i.e. what’s not allowed. There is the emergence of "pandemic fatigue" as a mental health issue... bringing me to this good advice and approach I heard in (your) interview… The coping strategies for Erik’s stress have, especially during this time, universal application." Scott Becker

So to pandemic fatigue and to an invisible foe that shows no sign of recoil or retreat, we throw a single sheet of paper. Try it. Take control, tame the brain, and come to know what this pandemic has taught us more than anything else: we are more alike than we are not. What's good for autism is good for all of us.

And that's the rest of the story.

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Newly released, by this author:

What's Not Allowed? A Family Journey with Autism

Chapters-Indigo.ca:

Amazon.ca: https://www.amazon.ca/Whats-Not-Allowed-Family-Journey/dp/1989664016/ref=zg_bs_935182_83?_encoding=UTF8&psc=1&refRID=K4VVPJGVZC86S2VRJ766

Amazon.com: https://www.amazon.com/Whats-Not-Allowed-Family-Journey/dp/1989664016/ref=sr_1_1?crid=10CT63TKGZKV6&dchild=1&keywords=what%27s+not+allowed&qid=1601826879&sprefix=What%27s+Not+%2Caps%2C230&sr=8-1

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