SALT LAKE CITY — The coronavirus pandemic has disrupted the lives of nearly every American. But for many children with autism who thrive on routine, and their parents, the changes are causing additional, unique complications.
For Kim Deverall, every day is a battle keeping her 10-year-old son, Kai, safe and well.
With school canceled, she says she’s seen Kai, who is self-injurious, regress in his development.
He eats things he shouldn’t eat and is experiencing heightened anxiety due to the changes in his life, Deverall said, as well as showing aggression toward his family members.
“Even now, his anxiety is so high that he won’t even touch or walk on carpet or rugs,” the mom said.
Deverall said she spoke about her son’s behavior not to complain, but to bring awareness to what so many families are going through during the pandemic.
“Disruptions in schedules and physical distancing are placing pressure on many caregivers to juggle working from home with their children’s educational and therapy needs,” Pamela Dixon, clinical psychologist director for the advocacy group Autism Speaks, told the Deseret News.
According to data from the Centers for Disease Control and Prevention, 1 in 54 children in the U.S. has some form of autism, a nearly 10% increase since 2014 when 1 in 59 was diagnosed with autism. Experts attribute that growth to improvements in diagnosis.
Kai attends a public school for kids who have special needs. All the students there have an IEP, or individualized education program, based on how serious their needs are. The plan includes speech therapy, occupational therapy, behavioral and educational goals, among other things, Deverall said.
But since Utah schools closed with instruction continuing virtually, Deverall says Kai has been left behind while his older, neurotypical brother has continued to receive classwork online.
Kai’s parents have received general emails from his school advising them on what to do with their child every day.
“And even if they were to give me instructions, I am not a specialized special needs teacher, I’m not trained, I don’t have the skill set to teach him the way that he needs to be taught,” Deverall, of St. George, said.
Each one of us are lucky to get through this pandemic mentally and physically healthy. As a special needs parent, we are just happy to get through the day.
“As a special needs parents, it is disheartening to know that it’s impossible to give our kids the therapy and specialized instruction that our kids need. I desperately want to, but can’t,” Deverall said.
Deverall said Kai asks every day using a speaking device if he can go to school. When he learns school isn’t happening, he asks if there’s school the next day. “And I don’t really have an answer for that that he can comprehend.”
The mother is also worried that Kai is at heightened risk for contracting COVID-19, as he doesn’t understand the need to wash his hands frequently and not to put objects in his mouth.
For 13-year-old Bryan Wood, the situation has been sunnier but hasn’t come without challenges, according to his dad.
“Change, especially if there’s one that he doesn’t expect, it’s usually very difficult for him,” Chris Wood said.
But Bryan loves software and computers, and so he’s enjoyed going to school “on his computer,” Wood said.
At Spectrum Academy, a charter school for kids with autism, some of Bryan’s teachers are also on the spectrum.
The school is “well set up to do online education, so he’s been able to understand what his assignments are and see his schedule for the day ... and feels pretty proud of himself when he finishes.”
But fear around the pandemic itself is tougher for the 13-year-old to cope with.
“He has told us that he feels a lot of stress. We’re lucky that he’s fairly verbal and can share what he thinks and how he feels with us sometimes,” the dad said.
Wood, a doctor, encouraged other parents of children with autism or who are vulnerable “to not assume that their kids feel fine about this, or to assume that they know everything they need to know. And to reach out at different times of the day and different environments to try to share just honest facts about it, and also how low the risk is to them,” as well as things that can protect them.
When the pandemic hit Utah, DeeAnn Beatty needed to resign from her job as a school aide to stay home with her son, Cody Lancaster, as his day program for adults with disabilities closed.
“So that was the big impact, was that suddenly he had no place to go so that I could go to work,” Beatty said.
Lancaster, 38, doesn’t understand why his TV programs get interrupted by breaking news conferences with the president or governor, or why his family needs to worship at home on Sundays. He misses his other family members — as extended family members are all staying within their own households — and the disruptions in his routine are upsetting for him, according to his mom.
Report ad Recently, Beatty and her husband were in their living room when Lancaster suddenly started to cry, “and he just cried hard, like a heartbreaking cry,” she recalled.
When he was finally able to talk, he said he missed his day program and friends.
“And so I know that it’s been bothering him, he just has a hard time expressing it,” Beatty said.
Lancaster is also blind, “so it’s not like I can just say, ‘OK, let’s just get on FaceTime and you can see your friends.’ I guess he could hear them, but it’s just not the same.”
Lancaster’s day program provided a different activity each day. Now, Beatty has been trying to fill that gap herself.
“It’s really hard for me because I’m trying so hard to stay positive myself and then try to keep him busy and happy and content. But it’s probably not that much different than moms with little children that don’t understand that they can’t go out and play with their friends,” Beatty said.
Like Deverall, Beatty worries what would happen if her son got COVID-19 with his other health issues. If either she or Lancaster gets the virus, the other will too because she is his primary caregiver, Beatty said.
Deverall said the community can help parents like her by showing kindness and understanding, and staying judgement if they see her and her son out.
“I think where people could just be a little more patient and thoughtful and understanding, if I do have to run to the grocery store, I can’t leave my son home alone,” Deverall said.
If people see her walking around with her son, she hopes they understand that though she would prefer to keep her family in quarantine, she needs to get Kai out of the house or she won’t be able to get him to leave home to go to school after the pandemic runs its course.
“And so for us to kind of keep doing our daily tasks are of the utmost importance,” she said.
“Each one of us are lucky to get through this pandemic mentally and physically healthy. As a special needs parent, we are just happy to get through the day. Keeping our family happy and healthy is the most important thing. We are taking it day by day, and it’s important to know that we all have our struggles.”
For families with members with autism who are struggling due to COVID-19, Autism Speaks offers resources on its website, autismspeaks.org/covid-19-information-and-resources, including an information line at 1-888-288-4762. People can also contact the organization by email at firstname.lastname@example.org.