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Helping autistic kids cope with the chaos and uncertainty of coronavirus

The author's sons exercising in the backyard on the first day of their new schedule while schools are closed. (Jackie Spinner)

My 8-year-old sat cross-legged on the coffee table in the middle of our living room on Friday silently watching a news conference on television. The Illinois governor just announced schools around the state would close this week because of the coronavirus.

My autistic son had finally, just in the past couple of weeks, settled into the routine of second grade. He was completing his work during the day and wasn’t running out of the classroom as much when he got distressed. It had taken us six solid months to get to this point.

“I’m sad,” he told me, after I tried to summarize in kid-friendly language what was going on. He couldn’t tell me exactly why, but over the next 48 hours, he was short-tempered. He argued with his little brother more than usual when ballet was canceled, then jujitsu, a weekend routine he loved. He barely ate and melted down over — what were to me — the smallest things. “I can’t eat these,” he said, pushing a plate of his favorite samosas away. “They’re too spicy!” (They were the same brand, from the same bag, prepared the same way as the ones he ate the night before.) He didn’t want to be alone. He wanted to be alone. He couldn’t make up his mind.

The world is out of order and scary right now, for adults and for kids, and for my autistic son and many other neurodiverse individuals, those changes can be particularly difficult to navigate.

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“Situations like the one we are experiencing with covid-19 can be especially challenging for those with disabilities,” said Geraldine Dawson, director of the Duke Center for Autism and Brain Development at the Duke University School of Medicine. “Certain behaviors, such as perseveration on specific topics, may increase during this period. These behaviors are often linked to feeling anxious and confused.”

I already had been talking to my sons about the extra need to wash hands and why we aren’t going to the playground for a while, which is what Dawson recommended. It’s hard to know as a parent of young children how much to disclose, but it’s helped kids to have simple facts. (This Tumble science podcast for kids that answers questions about the virus is a good place to start.)

“It’s better to go ahead and talk about what is going on rather than trying to hide or ignore it," said Dawson, also a professor of psychiatry and behavioral sciences. “Present the information in a factual manner using the communication style that is best for the individual child.”

It’s also important to establish routines. Perhaps some families can afford to be “a little more wild and carefree within the walls of your home,” as one social media meme making the rounds has suggested, but our ship would sink without expectations and structure.

“Most things are being thrown out the window at the moment,” said Matthew Lerner, associate professor of psychology, psychiatry and pediatrics at Stony Brook University in New York. “It’s important to ask what is constant in the children’s life and to keep it that way.”

Lerner advised creating a schedule. “Even if you can’t map out the whole day, make small routines for even parts of the day, a morning, an evening or one hour. Create anchor points that make them more manageable.”

He also suggested making a visual schedule, with or without pictures, and after we talked, I did just that, although I’m not sure how I’m going to pull this off while also trying to work from home.

“It is important to remember that you are asking your child to be patient and flexible and things will go a lot better if the caregiver can be patient and flexible,” said Angus Murray, executive director of the Kinney Center for Autism Education and Support at Saint Joseph’s University in Philadelphia. “A lot of times, screen time is used as a reward. If you can find an online educational program that matches roughly where the child is in their curriculum, this can be a win-win for everyone.”

That’s a relief because I had to hand both of my kids their iPads to finish this story.

Lerner said parents also can use some of the unavoidable changes to help children prepare for times when things are up in the air, which they are right now for all kids. The disruption may be compounded for my son, but every child is experiencing it on some level.

“We can create routine as much as we can, but ultimately there are going to be things we can’t control for,” he said. “Reducing the unknowns can be helpful. But we also can practice and desensitize uncertainty.”

Lerner recommended caregivers create a social story to explain parts of a day that may be unstructured. He also suggested using games of chance or improvisation to practice outcomes that aren’t predictable. “From anxiety management, it’s exposure,” he said. “It’s reducing that stress response when the unexpected happens. The key thing is making the unexpected explicit.”

I’ve tried to let both of my kids know I don’t know exactly what’s going to happen in the coming days. I hope schools will open again in two weeks, but I can’t offer that assurance with any certainty. Everything is on hold in our lives, and everyone else’s, for the time being while our communities try to stop the spread of the virus. But managing my own anxiety while also trying to calm their fears isn’t easy. I don’t have all of the answers.

This morning when my son woke up, his curls ruffled from sleep and his Spider-Man pajamas bunched at the knees, I tried to sound cheery and happy even though I haven’t felt this kind of dread since September 11.

“You know it’s going to be okay, don’t you?” I asked him.

“I don’t think so,” my son said, shaking his head. “It’s going to be confusing.”

He’s right. I reached over and pulled him to me for a hug

Jackie Spinner was a staff writer for The Washington Post for 14 years. She is now a filmmaker and associate professor of journalism at Columbia College Chicago.

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Coronavirus: What you need to know

Vaccines: The CDC recommends that everyone age 5 and older get an updated covid booster shot. New federal data shows adults who received the updated shots cut their risk of being hospitalized with covid-19 by 50 percent. Here’s guidance on when you should get the omicron booster and how vaccine efficacy could be affected by your prior infections.

New covid variant: XBB.1.5, a new covid variant pegged by the World Health Organization as “the most transmissible” descendant yet of the omicron variant, is quickly becoming the dominant strain in the U.S.

Guidance: CDC guidelines have been confusing — if you get covid, here’s how to tell when you’re no longer contagious. We’ve also created a guide to help you decide when to keep wearing face coverings.

Where do things stand? See the latest coronavirus numbers in the U.S. and across the world. In the U.S., pandemic trends have shifted and now White people are more likely to die from covid than Black people. Nearly nine out of 10 covid deaths are people over the age 65.

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