When COVID-19 forced students to switch to remote, online learning, Jessica McCullum was worried for her daughter Ava, a nonverbal nine-year-old diagnosed with Autism Spectrum Disorder, or ASD.
“Kids with autism require hand-over-hand assistance and very sensory and tactile experiences, and virtual learning provides absolutely none of that,” said McCullum. “We attempted to engage her for a couple of weeks, and then just completely stopped attending school.”
The pandemic impacted everyone, but young students on the spectrum were hit hard with a combination of routine changes, masking requirements, isolation and online learning.
The disruptions and changes exacerbated behavioral issues, making McCullum fearful the pandemic could lead to regression from Ava.
“When she wasn’t able to attend school, her behavioral issues just skyrocketed,” said McCullum. “She became aggressive, she would hurt her caregiver and her parents and siblings by scratching or biting, so much so that the teachers and therapists had to wear sweaters. Her concerning behavior, such as elopement, which is running away and darting, increased.”
McCullum is the founder of Autism Moms of Kona, a nonprofit centered around raising awareness and providing support for families with children on the spectrum. She said other parents in the group reported similar changes taking place in their children due to the pandemic.
“They’ve all expressed a huge difficulty when it comes to not being able to go to school,” she said. “Autistic kids already have the tendency to have little-to-no eye contact or little-to-no interactive play, so when you add that predisposition to those physical factors of being isolated, they turn inward even more.”
McCullum’s concerns were validated by a recent study published by Wyatt Massey, a doctoral student at Chaminade University of Hawaii in the Journal of Autism.
“When you look at autism, they are so focused on their routines, and any deviation from that routine causes an increase in symptom severity,” said Massey. “The major takeaway was that in-person treatment has been much more beneficial for kids than online video therapies.”
The study surveyed roughly 80 parents from November 2021 to March 2022, with a large majority coming from Hawaii, asking how pandemic restrictions and telehealth visits impacted children with autism.
The study found that due to restrictions brought on by the pandemic, there was a significant increase in frequency and severity of symptoms of ASD, and an increase in levels of stress for parents as well. Roughly 85% of parents surveyed preferred in-person treatments over online telehealth options, and this applied not only to school, but to other Applied Behavior Analysis, or ABA therapies as well.
“Treatment goals take long periods of time to gain progress, and lapses in treatment can cause lost progress or taking a step back from goals,” the report stated. “Individuals with Autism Spectrum Disorder who struggle with social communication, inflexibility, and insistence on sameness had significant difficulty adapting to this new norm and chaotic period of the pandemic.”
The study also looked at the restrictive measures of states to determine whether or not stronger mitigation measures had an increased impact on children with autism.
“I found that no matter which state it was, the kids were negatively impacted,” Massey said of his results. “The changes in just the natural routine these kids see is one of the major problem sources.”
Fortunately for McCullum, she was able to convince her daughter’s school to let Ava return in-person. Almost immediately, she noticed improvements in behavior, but McCullum clarified not all parents were lucky enough to have the opportunity.
“For the remainder of COVID, I got authorization because she had a one-on-one ABA therapist through the district to attend school on campus,” she said. “As soon as more kids started attending and there were more interactions in the curriculum, and consistency, she slowly returned to normal.”
Disruptions in routine can be detrimental to students with autism, and McCullum hopes the pandemic provides awareness on other stretches of time off, like winter or summer breaks for students.
“Despite COVID, there are disruptions because a lot of kids don’t qualify for summer school or winter break school, called (Extended School Year),” she said. “Outside of COVID, the special needs program is highly impacted because parents are forced to keep their kids home through the summer.”
Autism Moms of Kona has worked since 2018 to help fill that void and answer questions and concerns from local parents.
The group took a break during the pandemic as McCullum navigated her own challenges at home.
“I isolated myself as a parent during COVID. I was severely depressed and then I rose above and broke through this past year and restarted our services in April,” she said. “I wanted to establish resources and support groups and services because of what I experienced prior to and during COVID. The community needs it in general.”
The impact of isolation, social distancing and masks also spurred guilt among some parents who wonder if their precautions contributed to the social and behavioral changes they witnessed in their children.
“They blame themselves, and their families blame them, that they isolated too much during COVID and that they didn’t go out and try and set up playdates. They think maybe it was just because of COVID that their child does not want to interact with different kids,” she said. “The only advice I would give to them would be to not focus so much on what causes autism and how to fix it, and instead try to be the best advocate and supporter for your child.”
The group has returned to hosting several events for children ranging from yoga workshops to paddleboarding and horticulture lessons.
“With Autism Moms of Kona, we offer a lot of services and inclusive lessons, and we encourage families to try everything,” she said. “Don’t stick to just one ABA therapy, try anything that might bring you and your child joy and don’t be afraid to integrate with the community just because your child might be a little noisy or not your neurotypical child.”
Those interested in joining the private group are encouraged to visit the Facebook page at https://tinyurl.com/y5s27dzk.
“Think outside the box,” she offered as advice for families as they navigate out of the pandemic and the impact it had on their children. “Go out there and connect with people who are going through what you’re going through, and try as many different things as you can.”
Email Grant Phillips at gphillips@hawaiitribune-herald.com