On Monday, March 16th, Clare Harrop, PhD, found out that her daughters’ daycare was closing. As the full impact of state and national shutdowns hit her, Harrop began to lose sleep and feel a heightened sense of anxiety. At the same time, she was thinking of the many families she works with in her research studies. She recalls texting a colleague: If I’m feeling like this, how are parents of kids with autism feeling?
On Monday, March 16th, Clare Harrop found out that her daughters’ daycare was closing. As the full impact of state and national shutdowns hit her, Harrop began to lose sleep and feel a heightened sense of anxiety. At the same time, she was thinking of the many families she works with in her research studies. She recalls texting a colleague: If I’m feeling like this, how are parents of kids with autism feeling?
During dozens of conversations and interviews, the parents of children with autism talk about the importance of structure, planning, and routine. With Harrop’s daily routine upended, she kept wondering, “If I’m struggling this much, how are they doing?”
While juggling caring for two young children at home, Harrop and graduate student, Aaron Dallman, wrote a new grant in under 12 hours. “It’s the most productive I’ve been during this entire quarantine time,” she says. The grant has one major goal: to figure out how researchers like Harrop can support children with autism and their families during these unprecedented times.
During a previous major study, Harrop and colleagues found that parents of children with autism do a lot of planning. “They create worlds in which their children can function best,” Harrop says. “There is not much room for error and there is lots of planning in advance.”
So what happens during this time when planning feels futile or even impossible?
After receiving the TraCS $2K Grant, Harrop, Dallman (now a postdoctoral fellow in Harrop’s lab) and their team began sending out surveys and conducting phone interviews with families. She asks about how they are doing. Have they been personally impacted by COVID-19, either suffering financial hardship or knowing someone diagnosed with the virus? How have their daily routines changed? How is their child’s anxiety? How are the parents’ stress levels?
The answers to some of these questions surprised Harrop. “Some families are actually thriving,” she says. “Societal pressures and expectations are gone. There is no pressure to be somewhere at a particular time and behave a certain way. The kids can just be how they want to be.”
While some kids with autism are not doing well with telehealth or remote learning, Harrop says that quarantine time appears to have some benefits. “Going out into the world required so much prep work for these families,” she says. “Now they’ve created a comfortable bubble at home, and they don’t have to leave it every day.”
For this study, Harrop and Dallman hope to follow up with 100 families that have kids with autism, and 50 families with children who do not have autism.
She sent out the initial surveys in May, about two months after the first phase of lockdowns went into effect. Harrop thinks if she had sent out the surveys in mid-March, she may have heard more statements of fear and uncertainty. “We missed the initial, awkward transition,” she says. But she plans to continue to stay in touch with these families for the rest of the year. “Things might change as people start to go back to school. We just don’t know what that’s going to look like.”
But one thing is certain: as we continue to navigate through these extraordinary times, Harrop will keep these families at the forefront.
Originally published: https://tracs.unc.edu/news/1708-researching-the-impact-of-covid-19-on-families-with-autism
Story and photo by Mary Lide Parker
See also: The 2K Pilot Impact: A $2,000 Ticket to Success — Asking the Right Questions