Autism and isolation: How coronavirus is affecting kids on the spectrum and their parents

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ABOVE: NS mother shares ‘overwhelming’ experience of caring for kids with autism during COVID-19 – Mar 16, 2020

Susan Cosgrove’s living room is currently occupied by a massive makeshift trampoline.

The Toronto mom of three set up the unusual piece of furniture in an attempt to keep her children occupied as they remain confined to their two-bedroom apartment during the novel coronavirus outbreak.

The toy is especially beloved by her six-year-old son, Phoenix, who lives with Autism Spectrum Disorder (ASD) and Attention Deficit Hyperactivity Disorder (ADHD). He typically attends a full-day treatment program that has academic components, but he’s been home since the COVID-19 outbreak forced schools to close.

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“His day is [normally] very structured, very therapeutic and somewhat intense,” Cosgrove said. “It can be tiring for a little guy, [but] that’s his usual routine.”
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Parents across the country have had to get crafty with the ways they entertain their young ones due to COVID-19 — but Cosgrove’s job is slightly more challenging than most.

She’s constantly trying to find new ways to keep Phoenix entertained while at the same time, coordinating online schooling for her two other kids, 16-year-old Liam and 14-year-old Kaya. Liam is also on the spectrum, and Kaya has been diagnosed with ADHD and Obsessive Compulsive Disorder (OCD).

Phoenix loves the homemade trampoline in their living room. Photo courtesy of Susan Cosgrove.
“It leaves you feeling kind of dizzy,” she said. “I don’t know what my priorities are anymore. My life [before COVID-19] was coordinating care … getting everybody where they need to be, and all of a sudden, we all just need to be here.”
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Worried about four people crammed into a two-bedroom apartment around the clock, Cosgrove asked her parents if Liam could stay with them for the duration of the outbreak. She hasn’t seen him in two weeks, and the time apart has been tough for everyone.

“I keep in touch with him by . We’re trying to be good citizens and do our job … but I miss him,” Cosgrove said.
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Now, she’s concerned about teaching Liam how to use his online classroom.

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“It’s a challenge for me [to teach him remotely], and I don’t know that he’s able to follow it along on his own because at school he had a one-to-one [educational assistant] who helped him through all of it,” she said.

For children on the spectrum, structure and consistency from one day to the next are often crucial components for success — two things lost in the uncertainty of the coronavirus pandemic.

Phoenix plays with toys on the kitchen floor. Photo courtesy of Susan Cosgrove.
“It would be like if you woke up in the morning, grabbed your coffee, opened up your email to get organized [and see] what your day’s going to bring and your entire inbox is gone, permanently deleted,” Cosgrove said in reference to how the pandemic has made her children feel.
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“Suddenly, everything that prioritized your life and kept you organized and dictated your day-to-day is gone.”

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The Cosgroves aren’t alone — one in 66 Canadian children has autism, and experts say no two experiences of the disorder are the same.

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Craving structure

A common feature of ASD is difficulty with changes in routine — of which there have been many since the COVID-19 outbreak began.

“We’re all coping with a big change to our [lives] right now, and this can be extra difficult with children with autism,” said Dr. Melanie Penner, a developmental pediatrician and clinician investigator at Holland Bloorview Kids Rehabilitation hospital.

It’s also common for kids on the spectrum to have co-occurring ADHD, like Phoenix.

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“They need a bit more movement in their daily lives, and that can be difficult with the restrictions in place right now,” Penner said.

Between caregiving, trying to keep kids happy and homeschool, the coronavirus outbreak presents a unique set of challenges for parents of children on the spectrum.

“Parents are doing a lot of heavy lifting right now. Those challenges can really be accentuated for autistic children and kids with other neurodevelopmental disorders,” said Penner.

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To offset these impacts, Penner says parents should try to go with the flow instead of imposing a strict schedule.

“As a family, sit down and think together [about] the things that you all want to do in a day and the best time to do various things,” Penner said. “It doesn’t have to be strict, and it can adapt over time.”
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If something is a “less preferred activity,” like homework, try to follow it up with more preferred activities, like playing outside. She also recommends adding new forms of positive reinforcement, like sticker charts, prizes or special family events, like movie night.

Return to “normalcy”

Cosgrove is less concerned about needing to stay home right now — in fact, Phoenix thinks spending 24 hours a day with his mom is “the greatest thing that’s ever happened to him” — and more worried about what will occur when social distancing requirements are lifted.

“I don’t want to live in panic,” she said. “What’s going to happen when they have to go back [to school]?”

Liam, currently in Grade 11, had a very difficult start to the school year, and Cosgrove fears the pandemic may have interrupted any progress he made.

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“He’s anxious … we had to work so hard to get him the support he needed with the one-to-one worker,” Cosgrove said.

Ideally, said Cosgrove, Liam’s support worker would continue to connect with him during this time away from school, but it doesn’t look like that’s going to happen.

She also worries about Phoenix losing the progress he made in therapy.

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“Academically, he’s great … but I’m not a behavioural therapist,” Cosgrove said. “You’ve got to be objective and that’s certainly not my role. I can’t be objective when we’re together 24/7 in 900 square feet.”

Phoenix is in “his glory” right now, said Cosgrove, which is why she worries about the transition back to school.

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“He’s probably going to feel as disconcerted as he did when [the school] closed. It’s going to be absolutely startling,” she said.

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Simultaneously, Cosgrove is also trying to manage her own feelings and emotions during this time. She said her priority at the moment is working with treatment staff to plan the transition, and make it as successful as possible.

Penner recommends that parents be “kind and gracious with themselves” during this trying time.

“You don’t have to be the perfect teacher right now,” Penner said. “Everyone needs their own time and space to recharge.

If you need more support, said Penner, reach out to your clinician or your physician. Many have moved their services online and are ready to help.

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Questions about COVID-19? Here are some things you need to know:

Health officials caution against all international travel. Returning travellers are legally obligated to self-isolate for 14 days, beginning March 26, in case they develop symptoms and to prevent spreading the virus to others. Some provinces and territories have also implemented additional recommendations or enforcement measures to ensure those returning to the area self-isolate.

Symptoms can include fever, cough and difficulty breathing — very similar to a cold or flu. Some people can develop a more severe illness. People most at risk of this include older adults and people with severe chronic medical conditions like heart, lung or kidney disease. If you develop symptoms, contact public health authorities.

To prevent the virus from spreading, experts recommend frequent handwashing and coughing into your sleeve. They also recommend minimizing contact with others, staying home as much as possible and maintaining a distance of two metres from other people if you go out.

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