Schools cope with rise in autism
Parents struggle to educate aides, teachers at start of each new year
Every new school year makes Amanda Drier nervous.
A new classroom, a new teacher and, potentially, a new classroom aide means yet another group of people to educate about her seven-year-old daughter’s autism. It’s exhausting, emotionally draining and absolutely necessary.
“Just the misunderstanding of autism in general, especially in the school system, is really challenging,” Drier, perched on her living room couch in west Edmonton, said last week. “A lot of our kids are just looked at like they ’re bad kids. But they’re not bad kids.”
The number of students on the autism spectrum enrolled in Edmonton Public Schools has exploded during the last decade and a half. Between 2004 and 2017, the number of pupils in Grades 1-12 diagnosed with autism has leapt 61/2 times, to 1,344 from 207. Global enrolment in the district grew 23 per cent in that same time period.
Historically, Edmonton Catholic Schools hasn’t tallied students with autism, but staff are starting. The number of students enrolled in that district with a severe medical or physical disability, which includes students on the spectrum, grew to 692 this fall from 305 in 2004.
UNPREDICTABLE NEEDS
About one in 68 children are diagnosed with autism, according to the U.S. Centers for Disease Control. The neurological disorder seems to stem from a combination of genetic and environmental factors, such as parents’ ages, premature birth, oxygen deprivation during delivery and a pregnant mother’s exposure to pollution or pesticides, among other potential causes.
The disorder affects everyone differently, which can make it difficult for schools to understand and adapt, said Terry Duncan, executive director of Children’s Autism Services of Edmonton.
The Edmonton area has a cluster of health and therapy services for people with autism, which has drawn more autism families to the city, said Patricia Terrett, a support navigator at Autism Edmonton.
Some students learn seamlessly in class with a few adaptations, Duncan said. Others need more intensive help.
Following a provincial directive that Alberta classrooms must be inclusive, both Catholic and public schools usually first enrol students with autism in mainstream classrooms. In addition to teachers and educational assistants (EAs), Edmonton Catholic and public districts employ squads of other professionals to help integrate students with disabilities.
Both districts have organized, or funded, more staff professional development about autism, both in person and online, as its prevalence grows.
When a typical classroom doesn’t work, Edmonton Public Schools has the Interactions program, and Edmonton Catholic has a shortterm Genesis Inclusive Support Transition (GIST) program.
Families and schools are supposed to work together to create a plan for each student with a disability such as autism. Sometimes, the parties disagree on those plans, or families feel a school has imposed a plan without their input, said Carole Anne Patenaude, executive director of Autism Edmonton.
NON-STOP ADVOCATE
Drier and daughter Shyann had a rough autumn when a new principal started at Shyann’s school. She initially didn’t understand the first-grader’s needs, Drier said.
The energetic, cheerful child has made progress since she was diagnosed as a toddler. She makes eye contact with people, smiles and giggles, and is beginning to talk.
But the world is a source of constant sensory overload for Shyann. Bright lights are like razor blades in her eyes, and a gentle hum can feel like pencils being driven into her ears, Drier said. When she feels overwhelmed, she will punch herself in the face, try to rip out her hair, claw herself and throw her body to the ground.
Drier chose a school with a sensory room and a therapy room — spaces Shyann could escape to when she couldn’t regulate herself.
In the fall, the principal said Shyann could no longer use those specialty rooms, and she regressed. Although Shyann still had a full-time EA, the new EA had never worked with a student with autism before. On her psychiatrist’s advice, Drier cut back Shyann’s time at school to half days.
“Would you take a wheelchair ramp away from a child with a wheelchair and say, ‘Well, the rest of the kids are walking into the school,’” Drier said.
Drier was relentless, and the principal came around. Shyann has a new EA who has more experience with autism, and access to the specialty rooms was restored. She’s now working her way back to full days at school.
NEW SCHOOL, NEW RULES
It was also with trepidation that Margaret Henderson anticipated her son’s move to junior high last fall.
One of his elementary school teachers likened Robbie Henderson to the Big Bang Theory character Sheldon Cooper — exceptionally intelligent, chatty but blind to some social cues. The 12-year-old spends hours watching nature shows, and has already chosen his high school prerequisite classes to study entomology in university. But subtleties are lost on him, and a well-meant remark from a teacher or classmate can send him into a crying, screaming frenzy. His mother dreads seeing the school’s number on her phone.
When the Mill Woods preteen
chose a junior high, Henderson called the school in advance, asking to meet with them to prepare for next year.
They told her that wasn’t necessary, and to just show up in September. “That scared me, not having any supports in place,” she said.
Unlike in elementary school, there is no aide working with Robbie — school administrators said he didn’t need one. When Robbie’s meltdowns returned during the second week of school, he was calling his dad up to eight times a day in a frenzy. It took until December for the school and the family to come up with a meltdown plan for when Robbie’s favourite staff were busy.
There’s no ideal place for Robbie in school, she said, where he’s academically challenged and his behavioural needs are met. She’d like to see better training for teachers, and a sensory room in the school.
What school employees need is better training, and more consistent understanding of the disorder among schools and districts, say the people tasked with helping families navigate schools. Strategies that work for one student could be useless with another, Terrett said.
“All teachers and EAs inherently want to help these kids,” Duncan said. “They don’t always have the knowledge of what can help.”