Students on the autism spectrum and their parents face extra hurdles in trying to learn from home

by Carolyn Bick

Less than a week after Seattle Public Schools closed its schools’ doors to help stop the spread of the novel coronavirus, working single mom Karen Anthony found her seven-year-old son James on the roof of the house.

“He’s climbed up on my roof twice now. And this happens in five minutes –– quite miraculous, actually,” Anthony said with a small laugh.

Anthony’s two children, James and his brother Elliott, 13, both attend Seattle Public Schools (SPS) and are severely impacted by autism spectrum disorder. They were each diagnosed at age two-and-a-half. When school is in session, the boys require high levels of support in the classroom.

Both boys also receive private occupational therapy for an hour a week, plus additional services in Seattle Public Schools for occupational therapy. They also have private speech and language therapy at home and at their schools, as well as Applied Behavioral Analysis (ABA) therapy, which focuses on improving certain behaviors and adaptive learning skills.

But, these days, the only support they get is from Anthony herself, who now must act as teacher and therapist, in addition to being the boys’ mother. School closures and emergency movement restrictions mean that the pair don’t have access to their regular team of therapists and teachers. The situation is overwhelming for everyone involved, Anthony said, which is why James has started acting out. James and children like him can be triggered by changes in routine.

“At one point, there was a whole team of people working with him,” Anthony said. “All of a sudden, everything was taken from him. So, does he understand what’s going on? No. So, what does he do? He regresses. Dangerous behaviors come out.”

Because she is “pretty far along in the autism mom game,” as she put it, Anthony said she is handling everything pretty well. She helps moderate a Facebook group founded by her best friend Nikki Mahoney called Autism Moms of Seattle, a 3,000-strong group of Seattle-area moms who all have children on the autism spectrum. When the news first broke that their children would no longer be going to school, the parents in the group at first collectively wondered why they weren’t panicking.

“And then we started laughing. We thought, ‘Well, we’re in this war almost every day! We feel isolated every day!’ I mean, it’s something that we had to learn how to adjust,” Anthony said. “And, like I said, I, myself, am doing okay, but if this had happened to me 10 years ago, when my first was three, and I was in the beginning of this, I don’t know how I would have handled it.”

Still, just because many parents within the group have experience doesn’t mean they don’t have concerns. Speaking with the Emerald over the phone a few days before SPS started up distance supplemental learning for its students, Anthony scrolled through the group’s Facebook feed to highlight some of the concerns parents in the group had voiced. 

Several parents in the group are worried about their children’s routines being interrupted, as routine is integral to helping children on the autism spectrum feel stable. Some who live in apartment complexes expressed difficulties when it comes to keeping their children calm and quiet, which isn’t always possible. Others wonder if SPS and other schools will send kid-specific prep packages to help them through this time. And almost all of them worry about the short-and long-term consequences of cutting off their children’s normal routines, only to suddenly put them back into a classroom environment.

“We want to know what Seattle Public Schools –– well, all the schools, really –– are going to do for transitioning back into school, because that in itself is going to be a huge mess, as well,” Anthony said. “These kids –– it’s going to take them months to get used to their new normal. How are they going to be supported? … A lot of our kids do regress, especially now that services are no longer in place.”

Like Anthony, group founder Nikki Mahoney is a working mother to two boys on the autism spectrum. The older of the two is 11, non-verbal and significantly impacted. He attends an autism private school providing ABA therapy. The younger son attends a public school in the Issaquah School District.

Like SPS, ISD has also been providing education for kids stuck at home, including those with specific learning needs. The younger of the two has social challenges and receives speech and social skill therapies at school, but functions well, Mahoney said, so she can start him on an activity for a few hours and he can complete tasks with some help. But this isn’t the case for the older one.

“The reason these kiddos have summer school, for the most part, is because they regress very quickly, unless they’ve got something,” Mahoney said, echoing the group concerns expressed by Anthony. “It’s my eldest one that I worry about. He has had home therapies and clinic therapies, since he was three-and-a-half. And he’s 11 [now]. And all of a sudden, it’s stopping for who knows how long. And he doesn’t understand why.”

To make matters worse, the things her son does like to do, like swim, aren’t available to him right now, so he doesn’t have that beloved physical outlet. While Mahoney said she is lucky to have a good job and a house with a large backyard, she knows that not everyone has that. She worries for parents with children who have a tendency to turn violent, or who live in small condos or apartment complexes.

“There is just nothing in place for them,” she said. 

But Mahoney said she believes the school districts are managing as best they can. After all, she said, how do they choose what families without parents in the healthcare field get childcare?

“How does one child get preference over another? If they provide it to one, they have to provide it to everybody, right? And, right now, in-person therapies are just not happening. I am not really honestly sure they can do anything more than they are already doing,” Mahoney said. “They can’t have schools open. They can’t have teachers interacting with children. It’s the in-person therapies that they benefit from the most. So, it really depends on how the kiddo functions.”

There are unexpected social hurdles, too, Mahoney said. This whole situation reminds her of the unspoken social pressures that many new parents face. There’s this sense of competition and expectation of perfection, she said, and now that she also has to be her children’s therapist and teacher, this pressure to be the perfect parent has morphed into the pressure to be the perfect parent and teacher.

Mahoney said that she understands she can choose the people she surrounds herself with online, but that isn’t the case when it comes to messages from her sons’ schools. All of the emails she’s gotten so far have been filled with information about what she should be doing for her children, and goals for them to meet every week. But Mahoney is a full-time employee at a large technology company, and while she says she is lucky to be able to work from home, she doesn’t get to do any work until the evening –– and that’s after a full day of trying to stay on top of her sons’ education. While she appreciates the district’s efforts, she said she still feels frustrated and exhausted, because the emails make her feel even more inadequate than she’d already felt.

“For me, personally, it’s not helping me when the school district comes to me with a ton of extra things that my kiddo has to do, because I don’t know when I can find the time to split that between my kids,” Mahoney said. “I feel like it’s a ‘throwing it over the fence’ kind of thing. ‘There you go, you’ve got your resources, we did our part.’ But that doesn’t work for every family, and I just wish there was some understanding of that.”

Both Mahoney and Anthony said they worry about parents’ long-term mental health. Anthony said she is particularly worried about those parents who are only in the beginning stages of learning how to parent a child impacted by autism or other learning disabilities. One minute, they are navigating their child’s educational plan with a team; the next minute they are on their own. Both Anthony and Mahoney said they understand how fortunate they are to have their specific financial means and a community of support.

“There are a lot of parents out there who don’t have that, so they are isolated. We have to worry about those parents’ mental health. They are at home with these children who are severely impacted, they have no support, they don’t know what they are doing, behaviors are going up,” Anthony said.

Neither Seattle Public Schools nor the Issaquah School District responded to emailed questions and follow-ups from the Emerald before deadline.

Anthony’s children’s names have been changed to protect their privacy. Both parents asked that their children’s schools not be named to protect their privacy.

Carolyn Bick is a South Seattle-based journalist and photographer. You can reach them here.