Our son, J, is autistic, and has an additional cognitive disability and various other medical issues that affect his behavior; he reads at a kindergarten level, having a few words he recognizes inconsistently but finds phonetics a challenge. His cognitive disability means that he has difficulty with expressive language in a way that doesn’t let him reliably tell us if he’s hungry or hurt, or what he wants to do.
And yet, though lacking communication skills, he craves being around people. One of the things he normally loves about living in New York City is being out and about among people without the pressure of necessarily talking to them. When we run into friends — be it people we see every day or long-lost college classmates of mine — J often will tug at them, demanding that they come home with us.
His father and I thus try to do what we can to fill out a social life for him, which mostly means giving him proximity: we bring him along to social engagements hosted by understanding friends, give him a tablet and let him be around others, joining in as he wants.
But now with New York the center of the coronavirus pandemic in the United States, our family, like every family, has to keep its distance from everyone else. And we’re finding out what it means to self-isolate with a child who already suffers from isolation because of his autism and cognitive disability, without his usual supports.
His school is closed — with only a notice over the weekend that students would not be returning Monday; this despite the fact that, like many special needs students, his education is a delicate and complicated latticework of services (speech therapy, adapted physical education, counseling, occupational therapy, music and movement). One of his favorite outings is to shop for food — but now my husband or I do it alone, quickly and efficiently. His weekend swim classes ended that same weekend. Even when we go out to a public park because he’s stir crazy and wants (and needs) to run, our exercise is running after him to make sure he’s properly socially distant from anyone he might want to greet in friendship.
My husband and I tried to help J understand what was going on, through a home-based learning modality called the Rapid Prompting Method, teaching him about the coronavirus, what “contagious” means, the reason we have to stay away from people for a little while and wash our hands a lot, and why he would be staying home from school and an upcoming dinner party with two friends, George and Ron, that we’d planned to attend.
It didn’t quite take. “Today is Sunday,” he said that night before his day that his school would be closed. “No school.”
“That’s right,” we said. “Tomorrow, also, even though you normally go to school on Mondays, no school.”
“No school,” he said. Then he said, “Go school.”
I contradicted him again, after which he said, with anticipation, the name of the place at which he does an internship during school breaks, as though he thought it might be time to go there instead. I had to tell him he wouldn’t be doing that either.
“George and Ron,” he demanded. I explained that seeing them wasn’t possible right now. He then said the name of one of his sitters and demanded that she come over “soon.”
It seemed that J had picked up no lessons about the handwashing or virus transmission, only anxiety that the virus had changed his world. Soon he was just repeatedly saying, as a tic, “Tomorrow, pick up by Alex, go school?” (Alex is a teacher who drives J to school.)
The next morning, he was still repeating the same phrase, a sign of significant stress; plus his bed was soaked, even though enuresis (non-toilet urination) hadn’t been a problem for him in months. He really wanted to go to school — or at least continue with the routine of it — and was regressing in its absence.
J isn’t the only one reacting with anxiety over the sudden disappearance of school: Danielle Swiontek, a professor of history at Santa Barbara City College, told me that, while her nine-year-old, Finley Beltz, is still receiving applied behavioral analysis autism therapy at home, he verbalized his desire for the school routine as “I want to get coronavirus and die because there’s no school” — a frightening thing for any child’s parent to hear.
Another professor friend, Arna Bontemps Hemenway — whose five-year-old, Maccabee, is autistic and a complex team of supports similar to J’s — is seeing “major regressions” already. He says that, even with a routine established at home, Maccabee is “confused, and easily angered, and scared ” and worries that if his son has “regressed this much in 11 days, I don't know what things will look like after several more weeks of this isolation, let alone months.”
But the news out there is not all bad. My Columbia University colleague, Rachel Adams, told me that her son with intellectual disabilities was handling the city’s lockdown better than the rest of the family. “His best friends are his toys, so he doesn't feel bothered by the absence of other children to play with,” she explained. “He loves many of the other things about confinement that drive the rest of us crazy: doing the same thing every day, watching the same videos over and over, eating the same foods, and seeing only the other three people in your family.”
So I am holding out hope for meeting J’s needs even in the midst of social isolation. One of his absolute favorite things is “sleeping in,” and so we let him. Most of J’s physical activities were previously relegated to the weekend, but now, the hour-or-longer walks or jogs to the river have become the highlights of his days. He’s always had an interest in cooking, so we’re structuring much of his academics around food preparation — spelling m-e-n-u, using math for measurements, helping him improve his fine motor skills.
But, though much has been made of utilizing new technologies for homeschooling children, we’ve found live audio and video are imperfect replacement for in-person instruction. For instance, much of the way J learns is via “hand-over-hand” prompting: To teach him what “bend your knee” means, I can’t show him a bent knee and have him imitate it, I have to help him actually bend his knee. The Rapid Prompting Method we use requires holding a letter board for him (and keeping him calm and focused enough to use it). Even those bits of instruction that seemed replicable online — J’s movement teacher made a video of a yoga routine and the school psychologist creatively reads books and talks to him about feelings via Facetime — have left J mostly uninterested and even resistant.
We’re soldiering on.
Meanwhile, more tics have surfaced: Most recently, he’s taken to repeatedly saying “Mary has a dog. Want to see Mary and Millie,” in reference to my friend and her little dog, who he thinks is cute (and thus with whom we hope to help him overcome his dog phobia). No matter how often we explain that both Mary and Millie are currently out of town, he has kept repeating the phrase.
At first, it distressed me; I worried it might be another regression. But then I remembered that once, when a teacher didn’t show up because she was sick, “so-and-so is sick” became a stock phrase, even if the person wasn’t sick. We tried to correct the usage until one night he said to me, in an imperative tone, “Daddy is sick.” I rotely replied, “That’s silly, Daddy is right there” — but it dawned on me that what he meant was “I want to be with Mom, alone.” He was using the phrase simply to indicate that someone was absent (or that he wanted them to be absent) not ill, and he clearly was happy that evening when my husband left the room to the two of us.
Similarly, I’ve realized that his new stock phrases, whether about George and Ron, Alex picking him up, or Mary and Millie aren’t literally about turning on Zoom and seeing them. He wants things to be back to the way they were, when we had friends coming over. I couldn’t agree more.