LEWISBURG — One Valley mother noted children with autism are often described as “being in their own world.”
When the literal world shuts down, it can cause chaos for such a child.
The events surrounding the pandemic over the last year have heightened that struggle for many parents.
Three-year-old Emerson Counsil of Watsontown loved meeting with his therapists after being diagnosed with autism in the early part of 2020. He had finally established a routine with them when the pandemic forced a shutdown of services. Going virtual was not easy for the toddler, said mother Jeanie Counsil.
“He had been making tremendous progress with three therapists coming into our home weekly. When the pandemic started, all of his therapy went virtual. It was so difficult to get him to sit still in front of a computer for an hour for a session. He had such a bond with his therapists that this was a major transition for him,” she said.
The situation is similar for 5-year-old Liam Hagan, also of Watsontown.
His mom Heidi Hagan says Liam is considered to have moderate-severe autism, and is non-verbal in the traditional sense.
“His diagnosis includes global developmental delay, functional incontinence and sensory seeking. Initially when COVID hit this time last year, it significantly affected his progress during his time with the CSIU 3-5 program,” Hagan said.
“My husband and I work in health care,” she said. “So our risks of transmitting the virus made us very anxious. Liam was very sensitive to this, and he struggled to understand the lifestyle changes we were making.”
Cora Taylor, Ph.D., assistant professor and clinical psychologist for Geisinger’s Autism & Developmental Medicine Institute said although a year has passed, she does not think the impact of the shutdown has been seen yet in terms of patients with autism.
“I don’t think we have seen the full effect and we probably won’t see it for one to two more years,” Taylor said.
Depending on the child’s specific needs, Taylor said, some have been impacted more than others.
“Some have done OK and are able to participate well in virtual, and then there are some who lost all services,” Taylor said.
Children like Liam may just be content without interruption or any worry about all that is happening in the world around him.
“Many parents of children with autism report that their child lives in ‘their own world.’ I would say this is fairly true about our Liam,” Hagan said, “He likes very specific things and he is perfectly happy to entertain himself in his own bubble, with little interaction from others.”
Taylor’s biggest concern is for those who have missed in-person therapy for an entire year.
Much of this is dependent on each individual school district and whether the schools were strictly virtual, a hybrid or opened.
Lindsay Thompson, school based therapy services coordinator, Pediatric Rehabilitation, UPMC in Northcentral PA said many districts were able to have in-person classes of some variety.
In some cases there was need for telemedicine services, Thompson said, which was an adjustment for students with autism.
“It’s very hard for their rigidity,” Thompson said, referring to the children’s inability to adapt to new information.
Hagan said this past fall Liam started kindergarten.
“This presented many challenges and limitations, but we are very fortunate that the school district where we reside was placing priority for in-person learning on students with special needs, meaning that our son could attend mostly full-time and receive all of the educational supports he was going to need,” Hagan said.
She noted the team of teachers and therapists worked very well together to help Liam navigate his new world.
“Our goal at the beginning of school was to create a consistent environment that was seamless between home and school. We have had some bumps along the way, but overall he is thriving and learning and growing, and we are pleased with his progress” Hagan said.
Three-year-old Emerson was not able to see anyone in person other than his own household.
“It was also difficult because he was not having any interactions other than with his father and I for several months,” said Counsil, “ He would become bored more frequently and his behaviors would decrease. Several close loved ones had COVID and Emerson could not understand why he could not go over to their homes or see them.,” she said. His great-grandfather ended up in a long-term care facility where he still resides. Counsil said it remains a struggle to help Emerson understand why he cannot see him.
Thompson said therapists in their homebased, early intervention program were most concerned with losing that interaction with the younger, non-school aged children.
“The earliest intervention is the best intervention,” Thompson said, “The early years are crucial for social engagement. When you can’t go to the library, the park or family events, they lose their rigidity.”
The loss during this time is difficult to regain.
“It’s like they’re playing double triple catch up.” Thompson said. The upside to the therapists not entering the home, however, is the necessary participation of the parents.
“Early intervention is about family teaching. Sometimes (parents) stand back and let the professional do the teaching. Now they have to engage and they can see it from our point of view.”
Taylor noted many parents have taken well to filling the role of occupational therapists in their own homes. Counsil said she works with Emerson on his sensory skills regularly.
“We have learned to cope by having extra snuggles every day. Emerson has a sensory sock, a sensory swing and a ton of sensory bins to help with his sensory needs. He helps me find objects like rice, beans, stones, or pom poms to create bins and then we put small toys or letters/ numbers in the bins for him to play in,” Counsil said.
Once families are out and about, there comes the requirement of masks. For a child with sensory issues, this is not a desirable situation.
“We encourage all families to work with their child,” Taylor said. Geisinger has produced a guide to help parents encourage their children to wear masks and to help them understand why it is important.
Some of the sensory sensitivities for these children may include the stress of the loops on the ears, having material over their noses and faces and the inability to communicate by mouthing. Some children with autism need to mouth words in order to communicate and a mask makes that nearly impossible, which is a frustration to the child.
“I encourage parents to have the child practice wearing the mask for a small amount of time and give incentives for wearing it,” Taylor said.
Liam has to wear a mask all day when in school.
“We were very worried about how he would do learning to wear a mask, but he did surprisingly well! He wears his mask better than many adults I see out in public,” Hagan said.
Parents may soon have to make the decision whether or not they should vaccinate their child. This could also prove stressful for these children.
Taylor said Geisinger is working on a guide to help parents make vaccination less traumatic for their children.
Thompson said families and professionals need to continue to be a team as they help these children embrace what she feels could be a “new normal.”
“It’s hard,” Thompson said. “But at the end of the day it’s a collaboration of all of us working together,”