Jack is an early riser. Long before sunrise, his mother, Stephanie Daly, can hear her 8-year-old son laughing, chatting, and vocalizing. She’s been in bed just a few hours. She’ll do her best to get him back to sleep, but that’s unlikely. For the next 18 or so hours, she’ll watch over Jack closely, changing his diaper, preparing his meals, and helping him relax when he can’t self-soothe in his rocking chair.
Like millions of children around the country, Jack has autism. And like millions of parents around the country, Daly is caring for him. That’s never been easy, but six months into the pandemic, it is far more daunting. Sometimes it feels insurmountable.
Parenting during the coronavirus is difficult for all families. Many parents have had to quit their jobs, or cut back their hours, to care for their children. They have had to make concessions and adjustments they never imagined making. They’ve had to explain unanswerable questions.
But parenting a child with autism during a pandemic can present an abundance of unique challenges. Children with autism who are mostly nonverbal can require close supervision, a consistent daily routine, constant stimulation, and emotional support in the event of a tantrum. For some, sensory sensitivities can make pandemic precautions, like wearing a mask, an impossibility. So to keep their children safe, and to respect public health guidance, some families who have children with autism spend much of their time isolated at home.
“We tend to be the forgotten parents a lot of the time, and in the last six months, we have been completely forgotten,” Daly told BuzzFeed News. “Do you know what it's like to literally be trapped in your home, for six months straight, because your child isn't supposed to leave, and change diapers? This is about as bad as it can get.”
Daly, a 35-year-old from rural Michigan, asked to be furloughed from her retail job in early spring so she could take care of Jack. Her partner, Joe, works in retail. For most of the day, she is the sole caregiver for Jack, who also has cerebral palsy and uses cue cards to communicate.
“By the time 6 o'clock at night rolls around, you're exhausted,” Daly said. “You've had nonstop noise.”
Autism is an umbrella term for a wide range of symptoms and behaviors that begin in early childhood, causing social, behavioral, and communication challenges. Scientists don't yet fully understand what causes autism, but a growing body of evidence suggests it has a significant genetic component. Some people with autism have difficulty in social settings. Others have difficulty speaking or communicating at all. Autism is often accompanied by obsessive-compulsive behaviors, like repeating certain words or phrases or flushing toilets. Some people with autism grow up to be fully independent adults, with jobs and families. Others require 24/7 care for their entire lives.
For families who can afford it, caring for children with autism often involves a combination of speech, occupational, and psychiatric therapy. Many children need special education settings for learning, especially if they also have intellectual disabilities. These are crucial resources to help children with autism work on their social skills, develop their communication, improve their dexterity, and reach their academic potential.
When the pandemic hit, remote learning and therapies made individualized supervision difficult, forcing parents like Daly to become full-time educators and caregivers.
“We tend to be the forgotten parents a lot of the time, and in the last six months, we have been completely forgotten.”
Daly adores her son, whom she describes as “probably one of the happiest people you ever meet.” He laughs and giggles wherever he goes, and always has a smile on his face. She would do anything for him. But the isolation and round-the-clock care required by the pandemic has eroded her spirit and forced her to make concessions she wouldn’t have otherwise considered — long sessions on YouTube, for example. Jack loves watching videos of fireworks. A few months ago, he went through a dashcam video phase.
“I've given up in some ways,” Daly said. “I would never have let him watch YouTube like this before. But I barely have anything left to give. I'm doing what I can to keep him entertained and keep my sanity going.”
“I don't have any downtime”
Parenting a child with autism often means juggling work and the child’s needs. Parenting that child during a pandemic often means quitting your job.
Melissa Brown, a 45-year-old single mom from Oregon, took a two-month leave of absence from her customer service job to care for her 11-year-old son James, who has autism, and her neurotypical 8-year-old daughter, Katherine.
James loves dinosaurs, Star Wars, geology, and marine science. He’s academically on pace with his peers but struggles to make friends. Katherine loves arts and crafts, reading, and writing. The two are very different, but they have a strong bond and are quick to compromise during playtime (they both love Legos). James doesn’t like hugs, but he accepts them from his sister because he understands it’s how she expresses her love for him.
The two children have very different academic needs, and Brown said it was difficult to make sure both children got the attention they needed when school went remote. Katherine needed to read chapter books. And James needed hands-on learning and a consistent daily schedule.
“The [teacher] was only spending an hour with him, and then would give him lessons in reading and math that were online,” Brown said. “But there was no science, there was no history, there was no writing. I'm not a teacher, but I tried to fill that in, and I couldn't do it and work.”
Brown said she bought her kids workbooks for history and science, and asked them to write book reports. To compensate for the lack of an art curriculum, she let Katherine and James play with Lego blocks together and make handmade cards for holidays. For gym class, Brown let the kids have dance parties. Beastie Boys are a family favorite.
Brown said she enjoys reading fantasy novels, playing video games like World of Warcraft, and watching mindless TV. But she struggles to find time for herself. “I've never really been good at taking care of myself, and right now it's even harder because I want to do more for the kids than I am able to,” she said.
Working from home also means that periods of downtime — like 15-minute breaks, lunch breaks, or commutes — are consumed by parenting obligations.
“It’s more stressful,” Brown said. “It feels like I'm always on. I'm either Mom, or I'm at work. I don't have any downtime.”
Other parents have had to juggle schoolwork and childcare. Sarah Nguyen, 24, graduated from college in May. Her 3-year-old son, Kenji, was diagnosed with autism in January. Nguyen currently lives with Kenji’s father, her parents, and her sisters in a house in Minnesota. With everyone working and going to class under the same roof, it’s been “hectic” caring for Kenji.
Three days a week, Kenji does speech and occupational therapy over Zoom, in addition to daycare five days a week. Nguyen said he gets a lot out of the speech therapy, for which she is thankful. But virtual occupational therapy, which is designed to help with dexterity, is difficult. Often, Nguyen said, she follows Kenji around with her phone while the therapist watches him play, gives tips, and asks questions. It’s therapy and Nguyen said she’s happy to be involved, but it's very different and not as effective as the in-person sessions Kenji had earlier in the year.
“It feels like I’m always on. I’m either Mom, or I’m at work.”
Kenji is very hyperactive, Nguyen said, and he has a knack for undoing locks. He loves water and enjoys flushing the toilet over and over. He's also a quick learner and loves to imitate Nguyen's cooking using his toys. She often takes him for walks and bike rides to get his energy out before dinner, bathtime, storytime, and bedtime.
“I think taking daily walks and bike rides and just trying to get outside with him definitely helped get some of his energy out, and was like a self-care type of thing for everyone in our family,” Nguyen said.
Often, parents of kids on the autism spectrum have little time for themselves. Daly, the mom of 8-year-old Jack, said she can talk to her partner, Joe, about things that are on her mind. But she doesn't have any friends in town that she can confide in.
“My only escape at this point is Walmart, even if I just go to wander around and catch my breath and stop the noise,” Daly said. “My son is so noisy from the second he gets up in the morning until the second he goes to sleep — it's nonstop noise. And sometimes your ears are just ringing at the end of the day. And so for me to just be able to get out of the house and get silence.”
“I really wish that I could have a friend”
Daly has been frustrated by parents in her school Facebook group complaining about kids in the special needs program, who are not required to wear masks at school because of sensory sensitivities. Though they’ll be isolated in a single room without recess or gym, some parents don’t want the children to return to school at all.
“I think [the logic] was ‘Well if my kid has to wear a mask, why doesn't their kid have to wear a mask?’” Daly said. “That's what it comes down to.”
Though Jack is headed back to school, Daly is holding off on getting a new job. She’s certain the mask controversy will force the school to go remote again by October or November. “People are furious here that their children have to wear a mask,” she said. “I mean, they put signs in their windows. They've gone nuts.”
Brown, meanwhile, is concerned about James getting the socialization he needs. James has been bullied, emotionally and physically, by some of his classmates in previous grades. But fifth grade was different. James was enjoying school, and his classmates were including him. He was hopeful that he’d finally make a friend.
“In the last, I'd say a year or two, he's becoming more aware that his peers think he's weird,” Brown said. “And he says things like, 'I really wish that I could have a friend. I just want to have a friend.' He'd walk into class, and his teacher said he would greet everyone like, 'Good morning! Hello!' and make compliments if they got a haircut. He tries. But trying with 11 - 12-year-olds was not a cool thing to do.”
“Well if my kid has to wear a mask, why doesn’t their kid have to wear a mask?”
Fifth grade was an improvement, but COVID disrupted it. It also caused the cancellation of a school camping trip, which James was looking forward to. Brown said it could have been a milestone event for him.
“It was going to be the first time he was ever away from me without his father or my parents,” Brown said. “It was just going to be him. He was excited about graduating. He was excited about these things. And that was all gone.”
Fall brought another blow. Headed to middle school, James was eager to meet more kids and find someone he had a lot in common with. But middle school is being held virtually, and that’s a tough place to make friends.
“Everyone was telling him there was a much bigger chance he would find someone just like him,” Brown said. “He was looking forward to meeting this kid, and going to school, and meeting all of these new people. Now that's gone too and he’s back to 'I'm never really going to have a friend.'”
“We're just hanging on for dear life”
Six months into a global pandemic, one thing is clear: It’s nearly impossible to plan for the future. How will the academic year progress? Will the economy tank again? Will there be a second wave of outbreaks? A vaccine? These are sources of anxiety for everyone, but for the parents of children with autism, they are existential concerns. It’s unclear just how much longer they can continue as is.
Before the pandemic, Daly and her partner, Joe, had been planning to move to a small city a few hours away, a place with better education options for Jack. People in their small town aren’t very accepting of him.
“I've taken [Jack] to Walmart, and I've had people say, 'Oh, if that was my kid. I’d drown him,'” Daly said. “Or, 'He's so fat, maybe you should make him walk,' because he was sitting.”
But now she and Joe can’t afford to move.
“Really, at this point in life, we have no plans for anything — we're just hanging on for dear life,” Daly said. “Financially, I've blown through everything, keeping us afloat. Your electricity bill is higher because you're home all the time, and your water bill is higher because you're home all the time. And Joe went from a job where he made $70,000 to $80,000 a year to making $10 an hour.”
Nguyen and her husband, Chris, had been in the final stages of buying a house before the pandemic hit. Although having family in the house is helpful in terms of taking care of Kenji, it would be ideal to have their own space.
But when Chris lost his job, they were forced to withdraw their offer. Chris’s job covered more of Kenji’s therapy costs, and under Nguyen’s insurance, it’s still as much as $400 per session. She’s hopeful they can pull together another down payment at some point, but right now she's focused on building up an emergency fund, in case she loses her job.
“I think it will probably be at least 2021 before we feel prepared to start looking again for a house,” Nguyen said. “And I personally feel a lot more anxious when it comes to money, with the pandemic and everything, because everything's so uncertain. I feel like I'm hoarding and stockpiling money just because I'm so scared that we might end up on the streets or something, if anything really bad happens.”
Brown said she tries not to think about the future, because it’s too scary. She can’t afford to care for her family without a job. And she’s afraid of what might happen if James and Katherine need more from her, but she doesn’t have any more time to give.
“I'm really only trying to focus maybe a couple weeks at a time, because if I think long term, I start to panic,” she said. “I was hoping by this point that things would be back to normal. I just keep telling myself it's just a little bit longer, a little bit longer, just hold on a little bit longer. If this goes on and we're still in the same exact situation with masks and not being able to do or go anywhere by the end of the year, I'm probably not going to be OK.” ●