Seven-year-old Idris Zayic popped his head out of the sliding glass door in the backyard of his Chaska home and paused for a few seconds.
“Can you come outside for a second, Idris?” his mom, Oana Zayic, said, promising him a trip to Target later if he did.
“Inside Targy,” Idris said, giggling as he grabbed his mother’s arms. That’s what he says when he wants to go to Target, his parents explained. As a child with autism, saying he is going “to” Target is too vague. He wants to go inside Target.
Idris loves doing what many 7-year-olds do: play with Lego sets, Thomas the Train engines and video games on a Nintendo Switch. He’ll work on a Lego project for hours — following the instructions like a rule book until he’s finished.
He likes to jump on the trampoline — but only by himself — and when his mom takes him to Target, or “Targy,” they make a mad dash toward the potato chips, Idris’ favorite, before they get the rest of their materials.
As soon as he returns home from a trip to the store he’ll take off his shirt and socks and run through his yard, giggling. He’s happiest when he’s shirtless and sock-less his parents say, without his clothing irritating his skin.
Having a child with autism, parents Oana and Garret Zayic and local autism experts say, is full of rewards that far outweigh the challenges. But some of those challenges, because of COVID-19, have been exacerbated in the last few months — especially with the transition to distance learning.
The Zayic family hasn’t run into as many issues as autism experts fear many children with autism will face long after the COVID-19 pandemic has faded. Some of the challenges neurotypical people face with the pandemic, experts say, like learning how to properly and safely greet someone during a pandemic and how to read facial expressions when most people are wearing masks, are rules that have taken a long time for people with autism to grapple, and will take a long time to reverse even after there’s a vaccine.
At Caravel Autism Health in Shakopee, a preschool-aged boy plays with toy cars in a colorful room full of them. His therapist wears a mask as she speaks to him, but is otherwise able to interact with him as she normally would.
At the autism center, which opened in June, autism therapists are trying to work within social distancing and safety guidelines while trying to help their clients learn how to socially interact with others.
But the COVID-19 challenge hasn’t been within the clinic — which is safeguarded by temperature screenings and a sign-in sheet for anyone entering the building — but in what’s happening outside. Adding a COVID-19 layer onto an already-complicated world stacked with niceties and social rules is a challenge difficult for anyone to grasp, but for people with autism who typically operate under a particular set of rules, these pandemic rules are difficult to adopt Vice President of Minnesota’s Caravel autism centers Jackie Vick, said.
Part of treatment for Caravel’s autism patients is teaching them how to tolerate masks, Vick said.
Most patients, Vick said, won’t tolerate masks. People with autism are especially sensitive to materials rubbing against their skin, and masks are particularly irritating for most clients. Plus, staff members at the autism center wear masks, which can make communication difficult. Plus, for many people on the spectrum, social communication is already a fundamental challenge — so adding masks makes social interaction more difficult.
“I find myself smiling at a client and realize they can’t see me smiling,” Clinical Director for the Shakopee Caravel Autism Health Center Michelle Ghosh said.
The Zayic family said mask-wearing is something they were adamant about since the beginning of the pandemic. Their son Idris hasn’t had many issues wearing a mask — but he’s only ever had to wear them for short periods of time while at a store. If he had to wear a face covering all day at school, his father Garret Zayic said, it simply wouldn’t work.
“One hour of wearing it at Target is about all he could do,” he said.
Garret Zayic said he wishes there were more accommodations made for families like theirs, who understand the importance of wearing masks while also knowing that, realistically, not all people can tolerate masks on their faces. He said it would be nice if more stores had clearer policies for people who are disabled and physically cannot wear masks.
As of July 25, the governor’s executive order to wear masks inside businesses and indoor public gatherings does not include people who have disabilities that would make it difficult to wear a mask.
Vick said Caravel Autism Health is toying with issuing masks with clear plastic cutouts so clients can see facial expressions, and also clear face shields that wouldn’t be as irritating for people with autism. The clear masks have posed as a challenge, since they fog up easily, she said.
Director of Strategy and Innovation at the Minnesota Autism Center Tony Thomann said his facility has clear face shields available for patients, but most of them won’t tolerate wearing masks — and they don’t expect them to.
“That’s been an ongoing trick for all of us,” Thomann said.
Staff at Caravel in Shakopee are also implementing treatment for COVID-safe social greetings, like elbow bumps. Even those new safe social greetings can be challenging for people with autism who have centered their focuses on a completely different set of social greeting “rules,” such as handshaking and hugging.
“A lot of patients are very rule oriented,” Vick said. “Transitioning from handshakes and hugs could be hard for them.”
In the new world people with autism must adapt to, the Zayic family said there have been plenty of positives. Garret and Oana Zayic have learned more than they ever have about how to effectively teach their autistic son, since they’ve had to be his teachers during distance learning. His special education teachers at Carver Elementary have even sent the Zayics videos, showing them how to teach and interact with Idris as if he were in school, and they’ve gotten to know his teachers far better through consistent online check-ins.
The online learning has allowed the Zayics to personalize Idris’ learning to be perfectly tailored toward his needs. This summer, his self-assigned homework is to socialize with the neighborhood children. Oana Zayic even connected with a group of neighbors through a Facebook group to help the surrounding families better understand the idiosyncrasies that come with an autistic child.
“Because sometimes Idris walks around with no shirt and no socks,” Oana Zayic said, laughing. “We wanted our neighbors to understand that this is how he is.”
However, the Zayic family acknowledges that they are more privileged than many families. Both Oana and Garret Zayic are working from home, which helps them be more available when Idris needs them, and Oana Zayic’s parents live with them and help with Idris while they work, which prevents Idris’ parents from burning out. Save the occasional popping-into-the-background of their video calls, the family has grown fond of the extra spent at home.
“The bigger challenge is that he’s so used to being at home that he doesn’t want to leave,” Oana Zayic said.
Thomann with the Minnesota Autism Center said his organization is also providing more support for the family as a whole through telemedicine, which benefits everyone — not just the child with autism.
“One thing we’re doing is providing telemedicine for some of our family skills work, where we can not only interact with the child, but we provide that therapy with the parent as well,” Thomann said.
The Zayics said COVID-19 has helped the world pivot towards thinking more about accommodating others based on their needs. Masks, for example, protect people around the wearer who may be more vulnerable, and not necessarily the person wearing the mask.
“COVID basically made everyone disabled, and now everyone’s trying to figure out how to accommodate everybody,” Garret Zayic said.
Oana nodded along with her husband. “Things that were one-offs before… to where you’d do something because that one person has a disability... now it’s kind of becoming the norm. And it benefits everybody.”