Parents worry: Will upended routines mean children with autism in Pa. lose ground?

“A lot of the families are really, really in a bind."

• Joel Wolfram/WHYY
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  Joel is a freelance journalist and radio producer based in Philadelphia. In addition to his contributions to WHYY News, his work has been featured in NPR’s “Here and Now,” WHYY’s “The Pulse,” and PlanPhilly. He is a graduate of the Craig Newmark Graduate School of Journalism at CUNY and Middlebury College.

(Philadelphia) — Like most parents across the Philadelphia region whose kids have been stuck at home since schools closed, Tara Ryan-Schill has a new role to juggle on top of her day job: teacher to her three boys, ages 8, 5 and 3. Because two of them are on the autism spectrum, she’s trying on another hat too — acting as ABA therapist to her youngest son, Jacob.

He usually receives this applied behavior analysis, a therapy that helps children with autism develop language and learning skills, at a clinic in Newtown Square. But the clinic is closed because of regionwide efforts to contain the coronavirus. Staff there initially offered to send a therapist to her home in Audubon, Ryan-Schill said, but because she works as a nurse, she declined.

Ryan-Schill works in the ward her Montgomery County hospital has designated for non-critical patients with COVID-19. That puts her on the front lines of the fight against the pandemic, and she worries about the consequences of falling ill herself. Her hospital is already taking measures to conserve personal protective equipment like masks and gowns, she said.

“There’s so much stuff I do for the boys’ therapy. Couple that on top of me taking care of one of the riskiest populations of our community with this coronavirus,” she said. “It’s scary.”

With Jacob’s preschool closed, he’s also missing the occupational therapy, speech therapy and special support he received there. As schools, child care centers and outpatient clinics have closed, children with autism find themselves suddenly without many of the special services that support their learning and development or simply enable them to function day to day.

The situation has parents worried their kids will fall even further behind developmentally, and struggling to deal with difficult behaviors they’re not always equipped to handle.

“A lot of the families are really, really in a bind,” said Patti Erickson, president of the Greater Philadelphia Autism Society.

Children on the autism spectrum are likely to have an especially hard time with how social distancing measures have upended their routines, Erickson said.

“If you put a child in a very anxious situation, a changing situation, and then you take all their supports away, they’re really going to be in crisis,” Erickson said.

Melissa Mannato of Collegeville said her 16-year-old son, J.T., has started hitting himself in the face more since he’s been away from school, a form of “self-injurious” behavior that some kids with autism struggle with.

“He bruises himself,” she said. “That’s hard.”

J.T. is non-verbal, has an intellectual disability and suffers from seizures. That means he needs special support learning everyday tasks like putting on deodorant. It’s fallen to Mannato and her family to teach him on their own, with some remote help from school specialists.

Most of the time, Mannato said, J.T. is a “pretty happy kid.”

“He loves to go to school, he loves to go out in the community, he’s very social,” Mannato said. Now, “the things he enjoys most are taken from him.”

Ryan-Schill said that while she senses heightened anxiety in her son Jacob, her biggest challenge is keeping him and 8-year-old Andrew, who is also on the autism spectrum, on track with their learning. Her attention is split between helping her older sons with schoolwork and tasks like trying to fill the ABA therapist’s shoes to help Jacob.

“I can replicate some of what they do,” Ryan-Schill said, since she already had experience watching Andrew participate in the therapy.

Jacob’s therapy providers at preschool sent her emails with resources she can use to work with him, and she said she was planning on reaching out to the ABA clinic for remote help.

Providers who work with children with autism and special needs have had to restructure their operations to provide as much virtual support as they can while the pandemic keeps physical facilities shut down. SPIN, which operates child care centers in Northeast Philadelphia serving children with special needs and also provides community-based services, has had to suspend about 40% of its services, said CEO Kathy McHale.

SPIN made the decision to stop sending providers of early intervention services into clients’ homes at the beginning of last week, McHale said. Many of the children they serve received those services in SPIN’s preschool programs.

“Our behavior specialists are communicating with families offering support, ideas and keeping the behavioral support programs as much happening as is possible,” McHale said. She said a SPIN psychiatrist was also continuing to treat clients in a telehealth capacity.

When parents are not away at essential jobs or busy working remotely from home, there are things they can do to help their children cope, said Jessica Joseph, director of the Kinney Center for Autism Education and Support at St. Joseph’s University.

“It’s important to incorporate some sort of schedule” to bring some structure back into their lives, Joseph said.

At the same time, parents should build in some flexibility, allowing breaks from schooling when kids need them.

“If the child wants to sit on the floor, or maybe under a blanket fort, let them,” Joseph said.

Dianna Quinones of Northeast Philadelphia is trying to keep her 12-year-old twins, Evelyn and Ezekiel Corcino, on a schedule that one of their teachers at Joseph Greenberg School provided.

The schedule approximates their daily routine in the autistic support classrooms they attend.

“From 9 to 9:30, my kids do yoga,” Quinones said. “There’s reading from 10 to 11.” When they would normally have recess, they go out in front of the house to get some fresh air.

Her daughter’s teacher also sets up regular Google Hangouts for students to virtually socialize with their classmates. Quinones said home schooling was particularly challenging with twins on the autism spectrum.

“It’s exhausting by the end of the day,” Quinones said. With autistic kids, “you have to constantly do things with them.”

Like Ryan-Schill, she’s dealing with the added stress of working in a hospital during a pandemic. Quinones works three days a week as a nursing assistant, and said her biggest worry was bringing the virus home and her twins catching it. They both already have asthma-related respiratory issues.

While teachers, therapists and behavioral specialists are providing some virtual support for autistic kids who are sheltering in place, local organizations are also offering extra online resources. The Kinney Center is posting 30-minute videos to its YouTube channel every weekday that offer tips for parents, programs for both older and younger kids on the spectrum, and activities caregivers can do with them, like cooking. The website for the Autism Services, Education, Resources, and Training Collaborative has a page for coronavirus resources that includes guides for explaining the pandemic to people on the spectrum and creating a schedule.

Still, parents and providers worry that a long absence from school and in-person behavioral supports will set kids with autism back developmentally.

“We believe that when this crisis is over we’re going to find children who have had losses, whether cognitive or behavioral,” said SPIN’s McHale. “So we are going to need to support these kids more than we ever have.”

Ryan-Schill said 3-year-old Jacob was at a developmentally critical age for kids on the spectrum.

“We have a short window of time,” she said, “to kind of catch him up as much as we can.”

“I feel like we’re losing time.”

 

WHYY is the leading public media station serving the Philadelphia region, including Delaware, South Jersey and Pennsylvania. This story originally appeared on WHYY.org.