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Children on the autism spectrum cope with the new normal of a pandemic

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Posted at 9:06 AM, May 11, 2020
and last updated 2020-05-11 18:33:20-04

BALTIMORE, Md. — The coronavirus outbreak has forced many people to create a new normal.

Those changes happening in the daily routine can affect people's emotions.

Staying home in self-isolation during the outbreak can have a dramatic effect on the moods and behaviors of children with autism.

Kennedy Krieger Institute clinical child psychologist Dr. Daniel Hoover said "kids, they're not able to participate in a lot of the interests that they have, are feeling cooped up, as funny as that may sound. Children with autism feel isolated like other people do, they feel lonely, and cut off from their peers, and their regular activities it's really difficult for them."

Kristina Gillard and her 14-year-old son Gabriel are like most families dealing with the changes brought on by the pandemic.

“For my son it was assumed it was more of a break, after the first two weeks it started to sink in, and we had some regression behaviors and then he started to sink in kind of a depression," Gillard said.

“For many children on the spectrum, the autism spectrum, being home and not at school and not at all the appointments and activities they usually have can feel like a vacation to them. Not so much social interaction is required of them, not so many sensory inputs. They're in their safe place at home and if it's a safe and reliable place with people they're used to, some of them express to me in our telehealth sessions 'hey, I'm feeling great,’" Hoover said.

Hoover recognizes it's important during the pandemic to keep the changes in routine to a minimum for children on the spectrum.

“The defining features of having autism is a great need for sameness. Things being the same every day, through out the day and being able to count on that. When the sameness or routine is disrupted, child with autism can become quite upset, and interfere with all of the activities that they do," Hoover said.

Without the reliability of a routine, it can lead to the regression Gillard saw with her son.

“One of the hallmarks of autism is that kids sometimes have regressions, what we call backsliding in terms of their ability to do certain tasks, hygiene activities for themselves, self care, some of their emotional regulation and behavior regulation issues" Hoover said.

Keeping things the same meant creating a new at home schedule for both mother and son.

“He has a pretty full schedule during the day, I'll say about six hours out of the day, Monday through Friday, we are on some kind of, either telehealth with Kennedy Krieger or we are on with the school" Gillard said.

“It is overwhelming as a parent because I am working remotely as well. I go to school as well, so his daytime is entirely focused on what he needs from school, what he needs from the medical part of it, and then the nighttime is focused on me. My son has always kind of been my strength. He is my reason to get up and move and do the best I can so this was just more motivation for me to keep it together and make sure he's ok," Gillard added.

Yet another change in her son's routine is how he gets the therapy he needs. However, the need for social distancing during the pandemic has Gabriel sitting down at his webcam instead of his doctor's office.

“Telehealth is under the circumstances is the absolute best that we can do right now. He absolutely needs that physical contact. That social interaction is so important to him and for a lot of children who are on the spectrum, that is not something that is built into them. How to interact with others is not ingrained, it's not how they're made. It's something they have to learn, so for him, being inside and not being able to physically see somebody's mannerisms, their facial expressions is very difficult for him," Gillard said.

“There's a lot of hesitation with parents and how this is supposed to work in the home. Of course its never going to be as good as being right there in front of your medical provider, but for my son in particular it gives him that connection to the people he trusts. No kid wants to go and vent to their parent about everything, or tell them about everything, but he absolutely needs that time with Dr. Hoover, with all of his physicians and therapists to step away from me and have an unbiased ear and have that time," Gillard said.

The coronavirus has uprooted everyone's life in one way or another. Dr. Hoover explained it's important for parents to talk with kids about the virus and their new normal.

“Check in with the child each day, at least casually at a certain time, maybe at the end of the day, about feelings, emotions, anxiety, stress, what's going well, what's not going so well, and then to just have a chance for them to express that and get some support for it," Hoover said.

“For him, I have to be his stability. If I crack, that weakens him, and his ability to cope with the situation. So, for me it's extremely important for me to get myself up, get myself together, and put on that smile and make sure that his routine stays intact," Gillard said.

The end of the pandemic and the new normal will require a bit of an adjustment for children to get back in their old groove once again.

“It will be a shakeup. We see that in microcosm every year when the summer vacation gets over, and kids have to return to school, and many have lots of stress, and anxiety as they go back to old routines," Hoover said.

In talking with children about the coronavirus outbreak, Hoover also said it's better to not speak about the virus with kids on the spectrum in absolute or definite terms.

“For example, the virus will be over in a month or two isn't the greatest way to say it. We might be able to go back to work, we usually, we have a good expectation that we may be able to sometime in the near future but we don't know exactly when that might be a better way because once they fix their sense of time and and sense of what should happen on a particular moment or hour or date, then they become more rigid and more anxious," Hoover said.

“Hearing about people being sick can be anxiety producing. So, being really attentive to that is important. Having parents be more attune to what kind of things they say in front of their children is important because kids on the spectrum can become very literal and take what you say and the emotion you project as being the ultimate truth," Hoover added.