Some children with autism face severe disruptions during pandemic

September 15, 2020
Henry and Kelly Parker
Four-year-old Henry and his mother Kelly Parker. The pandemic has caused her to get creative when it comes to services and activities for Henry, who has autism. Photos provided

When the coronavirus caused schools to cancel in-person classes, the mother of a 4-year-old Mount Pleasant boy with autism was concerned, to say the least. “I was panicking. Henry thrives on structure and schedules and knowing what to expect,” Kelly Parker said. “I was so worried that he was going to regress or stop talking or start having tantrums every day.”

Henry’s occupational and speech therapy appointments shifted to online sessions, too – not exactly ideal for a preschooler with a disability. “I thought that sounded awful. But we had to do it, because I couldn't let him regress,” Parker said. 

A new survey of 8,000 families affected by autism shows the Parkers have plenty of company in struggling at times during the coronavirus pandemic. More than 60% reported severe disruptions in services and therapies. The problem was worst for children under the age of 5, like Henry.

Henry Parker riding his bike 
Henry's mom tries to include a lot of outdoor activities during the pandemic, like bike riding and hiking.

The survey was done through SPARK, a huge autism research project that’s looking for more families to take part. SPARK stands for Simons Foundation Powering Autism Research for Knowledge. It’s collecting medical and genetic information to increase our understanding of autism and give information and resources to families. Along the way, it conducts surveys such as the recent one on the impact of COVID-19.

Laura Carpenter, Ph.D., a pediatrics professor at the Medical University of South Carolina, is leading MUSC’s part of the multiyear SPARK study. She said other key findings of the COVID autism survey include the fact that the families actually like having medical appointments online, and some were surprised to see how well online learning went as well. 

Dr. Laura Carpenter 
Dr. Laura Carpenter

“Not having the stress of the social part of school and being able to focus on the academic part was nice for certain families. It was nice to hear it’s not all bad news,” Carpenter said. “I’ve been really concerned about these families, especially the ones whose children had pretty significant special education needs.” She encouraged families to make at-home routines as similar to pre-COVID times as possible.

Parker knows just how important that is – and how important participating in SPARK can be for families like hers. MUSC asked the Parkers to participate after Henry’s diagnosis. “Automatically, I was like, 'Sure. Anything that is going to help research for autism or help people gain awareness. Whatever we can contribute, we’re in,'” Parker said.

“I know the research has come a long way, but we still have a long way to go. Is this genetic? Is it environmental? What causes this? That’s what I asked myself over and over again. Is it something I did during pregnancy or from birth till 18 months or was this just created with him in the womb and he was born with this? There’s no definite answer,” Parker said. 

“I feel like having a kid with autism, if we can contribute to them knowing more about why people have it or if there’s any way to prevent it, then we’ll do whatever we can to do a tiny part of that research.”

Henry and his parents gave saliva samples to SPARK researchers from MUSC for genetic testing. They also have the chance to participate in surveys and other research related to SPARK. Any important findings will be shared with the Parkers. The researchers pay families for their time.

Henry Parker with his parents and sister 
Henry with his younger sister, Caroline, and his parents.

The first sign that Henry was autistic came when he was about a year-and-a-half old. “He was saying about 10 words. You could ask him to point to his nose, point to his head and he did – he was understanding what we were saying. And then it just stopped. You would say something to him and point to your head and he would stare at you.”

Speech therapy helped. Her son also needs occupational therapy and a special education teacher to learn how to succeed in school and life. Parker said that includes learning how to cope with sensory issues that became apparent last year.

“He would roll on the floor, grab kids’ cheeks, pull kids’ hair. He was laughing and having a great time thinking he was doing what was right, but he was all up in their space and they were like, ‘This is awkward. Leave me alone.’”

With expert help, Henry is learning to interact with other kids in ways they’re all more comfortable with. But that hasn’t been much of an issue lately. The pandemic has kept people home, including the Parkers. Henry’s mom takes care of him and his younger sister full-time.

“We spent a few days doing whatever — playing. And I was like, ‘I have to get a schedule,’” she said. “Luckily, we had a lot of resources. His special education teacher stayed in touch with me and created this portal where she’d send a bunch of worksheets, different ideas of things to do. We bought a printer and printed off scavenger hunts and worksheets. Basically, I put structure in place. We did a craft every day and we did a lot of cooking. And we did a lot of outside time. We’d go on hikes and we’d go to anything that was still open. Henry actually did really well.”

She also bought supplies for him to do occupational therapy at home and helps him with it. COVID-19 has not stopped her drive to help Henry reach his full potential. “In my gut, I think he’s going to be successful,” she said.

To find out about enrolling in SPARK, register online, email or call 843-714-1352.

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