When Christian Thorndyke misbehaved at school, he says his teachers confined him to a tiny room for hours at a time with no food or water. They called it an alternative learning environment. Christian’s mom called it prison, and she’s suing the school board for $16 million
Christian Thorndyke, shown here with his mom, Karen, is now 14 and in Grade 9
Karen Thorndyke always knew her son Christian was different from other kids. He was impulsive, sensitive, and had urges that would bubble up unpredictably. Sometimes he flapped his hands, a physical tic that seemed to soothe him. When Christian started Grade 1 at McKinnon Public School in Mississauga, he ran into trouble immediately. In a crowded classroom, he couldn’t focus. He would throw violent tantrums, yelling and swearing, inconsolable and out of control. A few months into the school year, a doctor diagnosed him with ADHD.
Thorndyke is a single mom who quit her job in retail to care for Christian when he was little. She says that whenever her son acted up at school, teachers confined him to a small room the size of a walk-in closet, with concrete walls and no carpets or padding. The Peel District School Board calls these kinds of spaces “alternative learning environments,” or ALEs. In other school boards, they’re called “calming rooms,” “time-out rooms,” “isolation rooms” or “quiet corners”—places where a distressed or troublesome student can be separated from the rest of the class.
When Christian first told his mother about the room, she was appalled. She knew her son was a handful, but he was supposed to be learning, not spending hours alone. To her, it sounded like a prison cell. And yet, she didn’t feel comfortable questioning the educators in charge of her son. “The board and staff let on like they knew what was best,” says Thorndyke.
Ted Byers, the superintendent of special education with the Peel board, declined to speak about Christian Thorndyke’s experience, but he told me that students are put in ALEs as part of a careful strategy, not as an ad hoc form of imprisonment. “Alternative learning environments should be a place where learning happens,” Byers insisted. He believes that when a kid is feeling anxious, some time away from the hubbub of the classroom can be helpful.
Not for Christian. Being placed in a small room against his will aggravated his anxieties instead of quelling them. Now 14, he remembers the room as a place where bad kids were sent. At McKinnon, he says, teachers would sit on a chair in front of the door to prevent him from leaving, and they covered the small window of the room with construction paper, blocking out the light. “If I kept acting up in the room, they’d add on more time.” If he had time left over at the end of the day, he was told he’d need to return to the room the next day.
Over the next few years, the Thorndykes say teachers placed Christian in an isolation room several times, sometimes for the whole day. In Grade 4, he transferred to Miller’s Grove Public School, but his behavioural issues continued. According to Thorndyke, the new school also used a small isolation room when Christian acted up.
In December of 2012, when Christian was 10, doctors diagnosed him with autism spectrum disorder. Thorndyke learned everything she could about her son’s new label. “It helped me understand him more, why he did certain things,” she says. “I learned how to avoid a meltdown.” The doctor who diagnosed Christian sent a report to his school recommending he be kept out of the alternative learning environment because it escalated his behaviour.
And yet, Thorndyke says, the school continued to send Christian to the room, sometimes for the entire day. According to the family, Christian often begged for food or water, or to use the washroom, and was ignored. Once, he urinated on the floor; he says he was given a mop and told to clean it up. One day, the stress and humiliation became overwhelming. Christian broke down. He wrote on the walls and began choking himself with his hands. Soon after, school administrators called Thorndyke and told her to keep Christian at home.
For the next two years, he was bumped from school to school across the public system in Brampton and Mississauga. Thorndyke claims he was asked to leave each institution for unmanageable behaviour. She says she got so many calls to pick up her son that it became a full-time job. In January 2014, the Peel District School Board told her that Christian would need to stay home indefinitely until they could figure out a new solution. For the rest of the school year, Thorndyke home-schooled him. The board eventually sent an educational assistant to help her.
In the fall of 2014, she went to the media to bring attention to her situation. Louise Sirisko, the Peel board’s superintendent of special education support services at the time, responded by telling the press that the board hadn’t excluded Christian from school, but had decided he needed a year of home instruction. “We are and have always been deeply dedicated to supporting this student and family,” she told Global News. A few weeks after the story broke, the Peel board found a placement for Christian in an autism-specific classroom of just six students, where trained teachers and educational assistants helped him through the year with minimal problems. But Thorndyke says it shouldn’t have taken a media-fuelled uproar to get proper care for her son. In March 2015, she filed a $16-million lawsuit that names a long list of employees at five schools in the Peel board. In their statement of defence, the Peel board denies all of the charges levelled against them. “At no time did any of [the defendants] falsely imprison, cause mental suffering, act in breach of any duty, fiduciary or otherwise, or commit any intentional tort, assault or battery,” they claim.
The Thorndyke case is an extreme version of a far more common story. As more autistic students enter the school system, administrators are scrambling to find the resources to support them. Ontario school boards are legally mandated to provide special education programs and services for kids who need them. For decades, they’ve been trying—and often failing—to live up to that responsibility.
The parents of autistic children have galvanized into a zealous, powerful constituency. The term “autism warrior mom” is now a badge of honour, with online communities and bloggers devoted to the image of the take-no-crap Mama Grizzly protecting her cub against indifferent principals and clueless doctors. One Pinterest meme reads, “The Autism Warrior Mom—Also known as the most feared and talked about individual in the teachers’ lounge.” You can buy “Autism Warrior Mom” T-shirts, emblazoned with a sword, a shield and the slogan: “The depth of my heart is only surpassed by my perseverance.”
Last spring, the warrior parents demonstrated their power. The provincial government promised new money for autism therapy—an additional $333 million—but the promise came with a caveat: in an effort to reduce wait times for younger kids, those who were more than five years old would no longer be eligible for funding for intensive therapy. The announcement sparked protests across the province. One mother phoned a Liberal MPP’s office repeatedly until the MPP finally called the police. NDP leader Andrea Horwath stood up at Queen’s Park and talked about a “lost generation” of children. After months of demonstrations, the government retreated. In June, they announced an additional $200 million, designed to help parents pay for private therapy while kids transition to the new system.
The protests were a harbinger of things to come. As the province’s funding for therapy changes, the Toronto District School Board expects that, over the next two years, three times more students with ASD will enter a system that is struggling to accommodate them. A war will be waged between the province’s cash-strapped schools and the thousands of parents who are fighting for their kids’ future.
There’s no biological indicator for autism spectrum disorder. People are diagnosed based on whether they exhibit a handful of symptoms, such as difficulty with communication, limited social interaction and repetitive behaviours like hand-flapping. Researchers estimate that there are probably more than 400 genes responsible for neurodevelopment, and the same genes associated with autism are also found in people with ADHD, obsessive compulsive disorder and other neurological conditions. As a label, then, autism seems at once too broad—encompassing everyone from eccentric professors to people who will need institutional care for the rest of their lives—and too restrictive, cordoning off one corner of neurological diversity and calling it a pathology. For massive organizations like school boards, this diversity makes it difficult to create policies and systems. What works for one student with ASD won’t necessarily work for another.
A growing number of kids are being diagnosed with autism. In 2002, the American Centers for Disease Control and Prevention estimated that one in 150 children had autism. A decade later, that number rose to one in 68. In 2003, fewer than 5,000 autistic students were enrolled in Ontario schools. Now, they number 19,000. And while, a decade ago, the provincial government spent $1.6 billion on special education—a category that includes so-called “exceptionalities” like dyslexia, deafness, giftedness and autism—today it spends $2.7 billion, more than 10 per cent of its $22.9-billion budget.
It isn’t enough. One report found that there is only one special ed teacher for every 37 students with special needs. Even getting children the psycho-educational assessment necessary to find a placement can be difficult; many schools have an average of six students still waiting to be assessed. And the majority of Ontario school boards spend more on special education than they receive from the government. They have to reallocate funds from other areas to cover the deficit.
In the TDSB, students with autism will either be placed in a specialized classroom, with as few as eight students for every instructor, or join a regular classroom. The mainstreamed kids meet with an Identification, Placement and Review Committee—a group that might include the school principal, psychologists and social workers—along with their parents. The committee will help create an Individual Education Plan, or IEP, which is a legally binding document that lays out educational goals and accommodations (for instance, extra time to complete tasks or frequent breaks to move around). The IPRC will also determine the level of support a student receives, which can range from a few hours a week with a special ed teacher all the way up to a full-time educational assistant.
The meetings between families and educators often devolve into tense standoffs, with combative parents on one side and condescending educators on the other. Parents of autistic kids spend their days waiting for the call to come pick their kids up from school. Unlike suspensions, which have time limits and oversights, principals are allowed to deny admittance to students with special needs for safety reasons. In a 2014 survey, almost half of Ontario’s school principals admitted they had asked parents to keep children with special needs at home, either because they felt the students were unsafe or weren’t able to use the toilet themselves, or simply because the school didn’t have enough staff to look after them.
In the past, most autistic kids were educated in specialized classrooms, but that method has fallen out of favour with educators, many of whom see it as a way to warehouse challenging kids. Instead, boards have moved toward integrating autistic kids into regular classrooms. It’s a noble idea. Research shows that, when handled properly, having autistic kids in the class can be beneficial for everyone. In theory, autistic kids learn from their classmates, and vice versa, in an atmosphere of empathy and mutual respect.
In practice, it’s much messier. School can be a confusing, scary place for kids on the spectrum. It’s a too-bright, too-noisy world, where comforting routines are disrupted. Often, kids are thrust into a mainstream classroom without the necessary supports to help them succeed. Teachers aren’t required to complete any additional training to work with autistic students and, in classrooms that are already overcrowded, it’s easy for autistic kids to fall behind. “Mainstreaming is a lovely idea that makes everyone feel warm and fuzzy,” one mom told me,“but for the children, it’s a disaster.”
Melissa Melnitzer is a Toronto family doctor with a 12-year-old autistic daughter whom I’ll call Anna. (Melnitzer agreed to speak with me on the condition that I use a pseudonym for her daughter.) Anna is a gentle kid who doesn’t cause trouble, and an avid reader with an encyclopedic knowledge about each member of the Pittsburgh Penguins. When she was in Grade 4, she began having difficulties at school. She couldn’t read social cues. When other kids excluded her, she would try to get physically close to them. “She didn’t have a frigging clue how to make her way in,” says Melnitzer. “She would try to push herself into a group of girls.” Teachers were concerned that she wasn’t respecting others’ space. Lunchtime became torturous, as kids bullied her for her social awkwardness.
As a doctor, Melnitzer believes in studying the research and following the evidence. “I came in with my three-inch binders and said, ‘What about this? What about this? What are we doing about this?’ ” She says she never got much of a response. So she had her daughter reassessed. Anna was diagnosed with autism, and Melnitzer began pushing to get her into an autism-specific classroom. It was a gruelling process: Melnitzer had to get an external developmental report and argue her case at the IPRC. Six months later, Anna began Grade 5 in an autism-specific classroom, with staff members who worked with her on her social skills and monitored her at lunchtime. She thrived in that environment. Philosophically, Melnitzer believes in integration. But given the reality of what’s available, she’s grateful for her daughter’s specialized classroom.
Patty Douglas, another Toronto mom, encountered similar problems with her son, Brennan. When he was eight, doctors diagnosed him with Asperger syndrome, an outdated term that was formerly used to describe high-functioning autism. At the time, Douglas was a special ed teacher at the TDSB, and she immediately went into warrior mode. Her life became devoted to helping Brennan. She brought him to a behavioural consultant and took him to applied behaviour analysis therapy. She moved him into a special program at his downtown elementary school. She went to a naturopath and bought supplements that she was told would help him. “I would sit there for hours and stuff supplements into gelatin capsules,” she remembers.
In his classroom at school, Brennan had an all-consuming need for physical contact. Sometimes he bit other students. Douglas says he was sent to the hall constantly and once sat alone in the office for an entire week. She got calls from the school almost daily and often left work to come pick up her son. She had always drawn comic strips with Brennan, trying to get a sense of his feelings. Once, he drew a picture of himself. “He was in the middle of a bunch of adults with fingers pointing at him, yelling at him,” Douglas remembers.
One day, he fled to the bathroom, overwhelmed by a change in routine, and locked himself in a stall, crying. The TDSB refused to comment on specific cases for this article, but Brennan recalls the principal breaking into the stall and bringing him down the hall to his office. Brennan lost control, rampaging around the room, tearing the art off the walls, flinging books to the ground. By the time Douglas got there, she says the principal had the skinny eight-year-old pinned to the ground. “I walked in on my son being restrained, face down with his nose in the carpet and this man spread-eagle on top of him,” she says. Douglas left that day and never went back, moving Brennan to various other schools across the public system. The experience marked part of a larger change for her: the endless efforts to “cure” Brennan of his autism were, she finally realized, absurd. Autism was an integral part of who he was.
As Brennan got older, his experiences in the public school system improved. Over the next few years, he studied in mainstream gifted classrooms and alternative schools. He’s 19 now, with grunge-era hair and a sly smile. He spends his time playing guitar, hanging out with friends and creating surrealist drawings—“really wacky stuff, weird, detailed creatures,” he says. He is still sensitive, still prone to anxiety, but the impulses that consumed him as a kid are manageable now. He hopes to finish high school in the next couple of years.
His mom, who has since completed a PhD in education, believes in integration, but she argues that schools need to stop treating autism as a pathology that needs to be eliminated. That means more individualized learning, smaller classrooms and approaching each child as an individual rather than a problem to be solved.
For teachers, however, this kind of revolutionary change often seems impossible, given their limited resources. One teacher who has worked with the TDSB told me he has to carefully mete out the time and energy he gives his students. “If I think about how many minutes I’m at school, I can give each kid three to five minutes of one-on-one time,” he explains. “Autistic kids need more time than that. They end up taking away from the other students.”
I spoke to a Grade 5/6 teacher who works at a downtown school, and she described the challenges of working with an ASD student in her class of 30. The student was very intelligent, but he required a lot of special care. At times, he would yell inappropriate, unkind things, lashing out at the kids around him. “I would have to abandon a lesson and step into the hall with him while the other 29 students got silly and loud,” she says. “In any given year, I’ve had between six and 15 students with IEPs in my class. It’s not just the one student on the autism spectrum: two others are gifted, three have learning disabilities, one other has documented behavioural challenges—a whole range of needs.”
Quite often, specialized classrooms aren’t much better. Kids in those environments still require parents who will advocate for them—otherwise, the classes become holding cells instead of learning environments, with teachers forced to babysit instead of educate. Debbie Grounds is an educational assistant who works in a specialized autism classroom, where many students come from low-income and immigrant families. Most of the kids are non-verbal and many are still in diapers. “I have some kids who are very aggressive,” she says. “I have others that are runners and will just take off. I have one student who just eats everything in sight. It doesn’t matter whether it’s carpet or food or glue.” In a classroom with many urgent needs, she sees that the ones who get the most resources are those who have the most demanding parents. “I have kids whose parents don’t speak English,” says Grounds. “They just hear the word ‘no’ and then they stop. They don’t know that they can push further.”
After years spent scrapping with school boards, many warrior moms abandon the public system altogether. Serena Thompson is one of them. When her son, Daniel, was born in 2006, she was a dispatcher with York Regional Police. As an infant, Daniel didn’t make eye contact. Diagnosed with ASD at two years old, he wasn’t verbal until just after his fourth birthday and wasn’t toilet-trained until age six.
In 2012, Thompson brought Daniel to W.J. Watson Public School for the first day of Grade 1 and waited nervously in the lobby. That first week, she sat in the school lobby all day, every day, and saw her son run past more than 15 times, sometimes with a teacher trailing behind him. When Daniel was in class, he cried and threw things. Three weeks into the school year, the principal decided Daniel couldn’t handle the regular classroom. He was moved to a portable where he spent the next four months alone with an educational assistant. In January, they tried to move him back to a community classroom, where he floundered. The school refused to comment on Daniel’s case for this story, but Thompson claims it was months before she got an IEP, despite the fact that the school is required to produce one within 30 days of a student’s placement. From her point of view, they hadn’t created any kind of structure that could allow Daniel to succeed.
She removed Daniel from school for six weeks. She called the York Region District School Board, filed complaints, and set up frequent meetings with the school’s principal. In May, she finally received everything she wanted—a detailed transition plan, an IEP, and a placement for Daniel in a classroom with just six students and his own educational assistant. By then, she says, it was all too late, all too contingent on her unrelenting advocacy. At the end of that year, she removed her son from the public system.
Last year, Thompson used personal funds and a bank loan to launch her own private school for children with ASD. Located in a mansion in Aurora, the Lighthouse Learning and Development Centre has 21 students, four full-time teachers and nine learning assistants. When I visited earlier this year, kids were asked to check in on a colour-coded chart with a series of cartoon faces—a visual way to explain whether they’re feeling anxious, frustrated, glum or serene. They bounced in place during lessons, undisturbed by teachers who allowed them to self-stimulate while tailoring lessons to their needs. Most Lighthouse students are kids who have moved from school to school, from the public system to Catholic to Montessori. Tuition is $24,000 per year.
When parents talk about the special education system, they liken it to playing a slot machine. If they happen to hit the three-cherry jackpot of an experienced teacher, an effective principal and a well-funded school, their child could be on a path to success. Education becomes a desperate attempt to rig the game to ensure their kid comes out on top.
In September, Karen Thorndyke tried her luck again, as Christian began Grade 9 at West Credit Secondary School in Mississauga. He was integrated into regular classes and given extra support, with permission to join a special needs classroom when he needed it. Before the school year started, Christian visited the school multiple times. He walked through the halls and met the staff, becoming familiar with the place so that the transition would be smoother, with fewer surprises. He was nervous but excited about the chance to choose some of his own classes, join sports teams and see what high school was all about.
Thorndyke hopes that the program will give her son the help he needs. For the last few years, whenever other parents have reached out to her to ask for advice, she’s always told them to fight. “I say, ‘You have to be a warrior. Because if you don’t speak up for your kid, nobody will.’” But no school program, no matter how well funded or compassionately designed, can guarantee a child’s success. The first Tuesday of the school year, Thorndyke walked her son to the curb, her stomach churning with anxiety. Then she sent him onto the bus and hoped for the best.