What Social Distancing Is Like For Parents Of Kids With Autism

Coronavirus and social isolation have upended daily life for families of children on the spectrum who thrive on routine.

Millions of children in the United States and around the world are suddenly home from school and largely stuck inside because of the coronavirus pandemic, which has thrust countless families into new and stressful schedules.

For parents of the roughly 1 in 54 children in the United States who have been diagnosed with autism, school closures and stay-at-home orders have brought with them a unique set of challenges. They’re helping kids who so often thrive on routine adjust to a new day-to-day that is changing by the minute. And in addition to overseeing remote learning, many caregivers are also making sense of what it looks like for their children to receive certain therapies and services remotely.

“We have never experienced anything like this before,” Dr. Malia Beckwith, section chief of developmental and behavioral pediatrics at Children’s Specialized Hospital in New Jersey, told HuffPost. “It really is unprecedented, and it’s definitely a challenge.”

Children on the spectrum tend to thrive on routines, structure and “social practice,” Beckwith said, which makes this time extremely challenging for those kids and their parents, who in many ways have to now act as teacher, therapist and mom or dad. But she hopes it can also be a source of comfort.

“It’s really about getting that new routine established, and once you have it, I think there’s a lot of hope for how children and families will be able to do,” Beckwith said.

HuffPost spoke with three parents about what it has been like to parent while practicing social distancing during the coronavirus pandemic and what they’re thinking about as they look forward.

“It’s like our whole ‘village’ has just ... stopped.”

I have two girls. My younger daughter was officially diagnosed with autism when she was around 20 months old. She was considered to be on the more severe side of the spectrum and was nonverbal. Reese is in first grade now, and she is amazing. She talks so much now! She’s made so much progress in so many ways. Like all parents right now, I’m worried about her having a regression.

When she was little, I quit my job as a case manager because finding child care was basically impossible. I looked around for a side hustle. I’ve always loved to bake, so I started a cookie company that took off. I’ve been making 400 to 600 cookies a week out of my house, but two weeks ago I had to close my doors. I couldn’t do it while also watching our girls. I’m going to file for unemployment benefits, and my husband has his job (he’s a police officer), so we are fine for now — although COVID-19 is spreading like wildfire through his department. But I do wonder how we’re going to keep paying for the private therapies our daughter receives.

She gets OT [occupational therapy] and speech [therapy] in school, and she also gets OT and speech at home. She gets ABA [applied behavioral analysis] therapies several times a week, which lasts for two to three hours a session. In a way, it’s like our whole ‘village’ has just ... stopped. (At least in person.) Her school district has been amazing, but trying to navigate the telehealth appointments has been pretty frustrating — like, we’ll have the laptop on and then be talking through our phones because we can’t get the sound to work.

I know that she is missing out on the social component of school. And I do wonder, when she goes back, what will those interactions be like for her? I hope that she’s learning enough from us and that she can pick back up again. We’re trying to stay positive, but it’s hard when there is so much we just don’t know. — Jenn, 39, Ohio

“Every day he asks if he can go back to school tomorrow.”

My son, who is 4, has “high-functioning” autism along with ADHD. Like many children on the spectrum, he needs routine. He’s in pre-K, but his school has been out since March 18. With school not in session, his routine is off.

Every day, throughout the day, he yells. He calls me and my husband and our 7-year-old daughter names. When his routine is off, he has such difficulty expressing himself. He might start spinning or his body will go limp. He will make baby sounds and cry.

We’ve tried to have a routine for him at home, but I know that my son misses school and wants to be able to go back. Every day he asks if he can go back to school tomorrow. I have explained to him that he can’t, because of the coronavirus, but his 4-year-old brain can’t process that information well.

California found out that school is out until the fall, and when I heard that my anxiety went up. I hope that as long as his day is the same each day, he will get used to being at home — and the yelling, the name-calling and the crying will subside. I know that I have to take each day one day at a time. Some days will be harder than others. — Neena, 41, California

“She told me: ‘All of the things I do to help manage my anxiety are gone.’”

My daughter is 13, and she was diagnosed three years ago, which is definitely sort of late in the game. She’s in seventh grade, and she has been home from school for three weeks. It was like a cascade of cancellations: School was canceled, her bat mitzvah was canceled, choir was canceled. She had her first big “autistic meltdown” in over a year: running to her room, screaming, crying, telling us “I don’t know what I’m going to do with myself.” We definitely like to prepare her before things happen, and there’s been so much change for her with absolutely no warning. She told me: “All of the things I do to help manage my anxiety are gone.”

Routine is so important to her, and when she doesn’t get it, two things tend to happen: She gets anxious, but she also has a tendency to kind of sink into an oblivion of screen time. The first week she was off, which was technically spring break, she spent an inordinate amount of time watching Disney+ — while I also tried to figure out working from home.

Now that “school” has started remotely, things are much better. There are a lot of aspects of this way of learning that actually work better for her, which is nice, although she has other challenges, like dyslexia, and I know she is missing the extra support she gets in the classroom. I can also see that it’s hard for her to figure out the new social “rules.” Like, do I initiate that Google Hangout with my friends? If they say no, does that mean they don’t like me? That stuff is hard for any 13-year-old, and I think it can be especially hard for her.

She’s an older kid, and she does have access to a phone and social media, so one of the harder things is limiting how much exposure she has to the news. It is easy for her to fixate on things, and she has a tendency to internalize. I told her I was going to talk to you for this, and I asked her if there was anything I should tell you. She said the hardest part is that there isn’t a definitive end. She wants to know, “Am I going to go to camp this summer? When is choir going to start?” There is this perpetual uncertainty that is really hard to deal with when you have a brain that wants concrete things. She wants answers. — Dana, 42, Colorado

Conversations have been edited and condensed.

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