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‘Change is loss’: Kids with autism struggle with break from routine

Gabriel Black, 17, who was born with a developmental delay, and his sister HoneyLee Black, 18, who has high-functioning autism, play basketball in their Spokane Valley backyard on Tuesday. Both are immunocompromised, so they need to take extra precautions during the COVID-19 pandemic. (Colin Mulvany / The Spokesman-Review)

Gabriel Black, a junior at Ferris High School, misses just about everything about prequarantine life.

He misses his teachers and friends, who he always fist-bumped or high-fived in the hallway on the way to class.

Black misses the lunch lady, who frequently surprised him – once, with an oversized gummy bear – because he helped her clear and wipe the cafeteria tables after lunch each day.

He misses his aide, Roy, though Roy has been checking in over the phone.

All children are different, but this applies exponentially in the case of neurodiverse children. How they are impacted by COVID-19 and stay-home orders varies widely, and families are struggling to fill gaps where services and respite once were and to access relatively new telehealth assistance.

While some children are experiencing language regression, others are at risk of elopement, a term used to describe when a child on the autism spectrum wanders from home. For Black, one of the more serious concerns is his loss of routine.

“Everybody’s struggling with isolation, and maintaining a routine and maintaining education,” said Dana Stevens, Northwest Autism Center clinical director. “But now if you’re talking about individuals with disabilities, take it times 10 because they struggle so much with routine.”

As Taffy Hunter, mother of 15-year-old Timothy, put it: For these kids, “change is loss.”

Black was born with a developmental delay, and participates in a specifically designed instruction program. Rachael Leonard, Black’s mom, said during the first weeks of the stay-home order, Black thought he was being punished.

“I had to sit down with him, and I came up with a social story to explain to Gabriel that there’s this bug out here,” Leonard said. “It’s not a bug that flies, but it’s making sick people and grandmas and grandpas sick, and we have to take very good care of everyone. And so just that alone, it puts him at ease.”

During this time, Black has dedicated himself to the work his school sent home, and for good reason. When he’s finished with school, Black wants to be like The Reptile Man, who presents live animal demonstrations all over the Pacific Northwest, including a show Black saw in first grade..

“He goes anywhere for someone’s birthday party,” Black said of The Reptile Man. “He goes to schools. He makes his own reptile show.”

Learning from home has its advantages. Part of Black’s education is real-world skills, and he has happily learned to make his favorite double-chocolate-chip pancakes.

Gabriel’s older sister, HoneyLee Black, is a senior at Ferris and takes part in the Community Colleges of Spokane’s Running Start program.

“I only need like one quarter more of college, and then I’ll have my (associate degree), too,” HoneyLee said. “Then, after that, I want to major in biology and minor in art.”

When HoneyLee was young, she was diagnosed as autistic, but was rediagnosed with pervasive developmental disorder. This was considered a subtype of autism in the Diagnostic and Statistical Manual of Mental Disorders in 2013, but is no longer listed.

Leonard said most of HoneyLee’s issues have been social, but she seems to have overcome much of that. HoneyLee had the role of Vera – characterized as the young, naive friend of the eponymous couple – in the female cast of Ferris Theatre Arts’ spring production of “The Odd Couple.”

HoneyLee recently signed with the independent label Southern Sky Music Group after they saw a YouTube video she posted in April 2018, performing a song she wrote called “Sleeping Beauty.”

HoneyLee has a boyfriend of seven months, whom she met through theater, but she can’t see him socially. Her whole family is immunocompromised.

“She asked me a couple times if he can come over,” Leonard said. “Before I can even answer, she’s like, ‘No, it’s OK, Mom. It’s all right. He doesn’t have to come over.’ ”

Leonard said her kids don’t necessarily fit the image of the typical family with autism, but are “really in a place of their own.”

According to the Centers for Disease Control and Prevention’s March statistics, 1 in 54 people has autism spectrum disorder.

A typical neurodiverse family doesn’t really exist.

For some kids, the stay-home order has been positive. Michelle Janshen said her 12-year-old daughter, Violet, is doing better because she had high levels of anxiety due to bullying and had been struggling with self-harm. Now, she’s doing much better.

Janshen is a behavior technician for kids with autism, and she’s seen this same effect with a lot of the kids she works with.

Arika Dawson is also a behavior tech, but because of the way insurance companies cover telehealth, she can’t work with the kids she’s used to seeing five days a week. Instead, her supervisor is doing the telehealth appointments.

“I was thankful that I was able to be there for the couple of weeks when school went out, to at least help transition them to having to be home all the time,” Dawson said. “But now, I’m phased out, too. So that’s another change that they’re having to deal with and the parents are having to deal with.”

Northwest Autism Center provides direct treatment, family navigation, services and support. Stevens said when the stay-home orders pushed many providers to telehealth, their nonprofit had an edge because it had provided family training services through a program developed with the state Department of Health and funded through a federal grant.

The grant was intended to make treatment more accessible in rural areas, but now it’s needed just about everywhere and Northwest Autism Center is reaching out to families and providers, speaking in webinars to get everyone up to speed.

“There’s a lot of things that are going on that families don’t necessarily realize that they can still get support and services under their insurance,” Stevens said.

Janene Chesselet’s 4-year-old son, Jaydon, made the switch from in-home Applied Behavior Analysis therapy five days a week to telehealth, and Chesselet is worried about Jaydon’s speech.

“He is still talking some and trying to talk, but his behavior has definitely gotten worse,” Chesselt said. “He’s moving backward a bit. It’s pretty tough.”

Leslie Blevins, an Enilda Clinic psychologist, said the telehealth option with her clients has been helpful because she’s able to see them in their natural environment. Blevins’ main concern has been for the parents.

“Parents haven’t been taking care of themselves in a way, because they’ve never had to (deal) with this amount of stress, and what we’re starting to see is the stress is taking its toll, and children respond to that,” Blevins said.

Grace Olson, an Audubon Elementary school nurse, said she’s seen parents struggle as well. It’s a struggle Olson knows firsthand: Her 8-year-old daughter, Laura, has autism spectrum disorder.

“We know our child the best out of anyone, but that doesn’t mean we necessarily have all the tools that we need to help them succeed,” Olson said.

Many parents worry about their child’s safety. Stevens said elopement affects about half of children with autism. Recently, a 13-year-old was missing for 48 hours, Stevens said.

In January 2019, this was Taffy Hunter’s worst nightmare come true. Timothy was missing for four hours one day, said Hunter, who cannot hold back tears when she speaks about it.

Now, Timothy has a plan in place if he wanders: He’s supposed to go to a specific playground. He wears dog tags with his information and carries a cellphone. It hasn’t happened again, but a couple of months ago, he knocked on her door with his jacket and shoes on. Hunter worries that if the stress of Timothy’s situation worsens, he might wander again.

Even though he’s home-schooled, the pandemic has been hard on Timothy. His Maine Coon cat, Mittens, who always lay on his chest purring when he was stressed, went missing, and his entire family being home can be a sensory overload. Due to sensory issues, Timothy can’t wear a mask, so he misses out on walking to get lunch from school.

Timothy told his mom what he misses most is seeing his grandparents. Once a month, he goes to Loon Lake to volunteer with them at the food bank.

Hunter tells her children to imagine a window. There’s a bar that runs horizontally across that window. Everything above that window is free, open space. Everything below is the stress you are experiencing. The bar can move up and down. Sometimes, she has them draw their window.

“When you already live with that bar really close to the top, you have very little free open, clear space to experience extra stress,” Hunter said. “And that’s where we’re living right now. Everyone’s kind of bumping into the top of their window.”

Stevens said families that are struggling should reach out to their providers, The Arc or the Developmental Disabilities Administration, insurance companies and other nonprofits, such as Northwest Autism Center. She said with financial and unemployment situations changing, families might temporarily qualify for Medicaid and other resources.

“If families can qualify for Medicaid, even as a secondary insurance, they might have access to some services that are not covered in their private insurance,” Stevens said.

There has been an upward trend of Medicaid enrollment in Washington since the end of March, said Amy Blondin, Washington State Health Care Authority spokeswoman. Currently, they are seeing an average of 1,200 new enrollees per day.

Coronavirus has forced the state Developmental Disabilities Administration to innovate as well. Previously, the department would assess the client in-home, but now it’s over the phone.

“It’s even more important for our folks that we support, that we try to be creative, or at least as flexible as possible,” said Beth Krehbiel, DDA chief of Medicaid and eligibility.

Krehbiel said parents normally request extra services when the school year ends. The requests in the past few weeks have been on par with that type of demand.

“We’re approving those and treating those like the time it is: School’s out,” Krehbiel said.