The autism controversy for the uninitiated- Part 2
Autism goes to school
A catastrophe has been narrowly averted. The province has backed down on its decision to cut therapy funding for children on the autism spectrum currently enrolled in ABA programs across the province. So now 8,000 to 9,000 children with severe self-regulation limitations and communication barriers will not be thrust into public school classrooms on April 1st.. But it’s only a six month reprieve. In the meantime it doesn’t appear that schools will be any better prepared to cope with special needs kids. The government has ordered a hiring freeze. That means the shortage of staff needed for special education students will continue. Lifting caps on class size further ensures fewer teachers with heavier workloads. Special education classes are not exempt from these cuts.
A tug of war is being fought between parents of children with autism and the Ford government. The province’s determination to cut service and save costs pitted against the parents’ fierce and dogged opposition has made this the disability battle of the decade and it’s not going away.
A school system already weakened
The moms I sat with as we packed the visitors’ gallery at Queen’s Park recently are probably too young to remember the conservative Mike Harris government two decades past and its devastating impact on public education in this province. Local school boards lost the power of taxation they had held for over 150 years. With it went the flexibility to respond to local needs. The provincial funding formula which replaced their former tax revenue was less than school boards had previously needed to fund their operations. School boards by law cannot run deficits so they had no choice but to make massive staffing cuts.
To balance their budgets, school boards laid off hundreds of non-teaching staff: psychologists, speech therapists, community and youth workers, teacher librarians and scores of education assistants. Special education programs suffered in particular. Some boards, such as the TDSB, used dollars earmarked for special education to defray other costs in their budgets. Tight fiscal conditions pushed the school boards to comply with provincial policy to close schools and then sell the property. Small schools- ideal for special needs students- were consolidated into larger ones. When it came to choosing which secondary schools to close in Toronto, those most often selected had large populations of special education students. Successive Liberal governments under Dalton McGuinty and later Kathleen Wynne did not reverse these radical moves.
Charlie’s school days
My nine-year old grandson, Charlie, was almost turfed out of his therapy on April Fools’ Day- thanks to the Ford government. Since September 2018, Charlie has been thriving in smaller group settings with six other autistic children folded into an Applied Behavior Analysis (ABA) therapy service provider in North York. Every morning he bounds into the classroom and exchanges enthusiastic greetings with his classmates and his instructor therapists, Kira and Sinead. Whenever I come to pick him up at the end on the day, he’s smiling. His schooldays have included plenty of field trips during which the class is escorted by ABA trained agency staff and enough parents to provide a one-on-one child to adult ratio. They’ve been to Pioneer Village, the Science Centre, the ROM and skating at Mel Lastman Square. The trips have always been an enhancement to their curriculum and included preparation and follow-up activities. Charlie bubbles with excitement anticipating these special trips. He counts the days and marks the calendar. Finding this wonderful centre has been a godsend even if it means driving over an hour and a half each way every day to commute from his home in east Scarborough.
Charlie’s experience in the public school system, however, was both good and bad. Charlie attended two public elementary schools prior to his present full time ABA therapy program. The first school was wonderful. The second was a disaster.
A great little school
A warm welcome preceded Charlie’s first day at a K to 6 elementary school in Scarborough where he was offered a placement in their new diagnostic kindergarten (DK) class. A small class in a small school, it was the first of its kind for both the school and Charlie’s teacher. In the spring of 2013, Charlie and his mom were invited to a meeting. Waiting for them was the principal, the Special Education Program Co-ordinator, the office administrator, and some of the teachers. Every E.A. in the school dropped by the meeting to say hello. Later Charlie’s teacher phoned his mom at home and gave her phone number. In August, Charlie and his mom returned to the school for a little tour to prepare him for his new environment. The office administrator welcomed them warmly, remembering Charlie’s name and unlocked the classroom door so he could look around.
That September Charlie returned home happily after his first day at school and every day after that. His day included plenty of outdoor play which for him reduced his stress levels and kept him fit. He couldn’t wait to get to school each morning and that continued into the second year of full day kindergarten. Part way through SK, Charlie started his therapy program and divided his time between school and an ABA therapy centre known as Toronto Partnership in Autism Services (TPAS). He spent three days a week at school and another three at TPAS. At the time, his parents felt he was getting the best of both worlds. So did I.
The most impressive aspect of this great little school was its inclusiveness. And it came straight from the principal’s office. One day Charlie’s mom dropped by the school to witness some students with behaviour problems (BEH) walking hand in hand with Charlie’s kindergarten class. Each older child was carefully escorting a kindergartener to their next activity. It was evident how proud they were to be given such an important responsibility. “It’s an earned privilege,” explained their child and youth worker (CYW) as she and the children passed by calmly and happily with no one trying to run away or frightened by competing stimuli. Every morning when Charlie’s mom dropped him off there were big high fives exchanged with these older BEH children. One boy cheerily reminded her every morning that he was the one who taught her son how to give a high five. The idea for the escort program was the principal’s. Here there were no exclusions of either the kindergartners or the BEH kids from graduation ceremonies, special assemblies or school performances. That too was at the principal’s insistence.
A not so great school
Since no grade one class existed at his first school that could absorb Charlie and his autistic classmates, he had to transition to another larger K to 8 elementary school in Scarborough the following September. From the start everything went sideways. The principal my daughter had met the previous May had been reassigned. So was his classroom teacher- twice. So they started the year with people they’d never met. If this had happened to a family with a neuro-typical child, it probably would not have mattered but with a child that needs to be thoroughly prepared for new experiences, you’re courting a melt-down. A letter from Charlie’s mom to the principal and his teacher that was meant to prepare them for some safety issues went astray. Phone calls and requests for a meeting went unanswered. She wanted to inform them about the times when Charlie had to wear his ear protection. When Charlie’s mom tried yet another follow up phone call, the principal returned her call and read her the riot act saying that she had 400 children to manage and that the parent’s point of contact was to be the teacher and the teacher alone.
There are many factors to consider when managing Charlie. The key to working with him is to understand Charlie has major challenges with self-regulation and is easily over-excited in a given set of circumstances. The triggers that set him off most often are environmental and usually related to sounds like: loud music, PA systems, buzzing lights, plumbing noises and ambient echoes or cacophony such as the sounds of kids playing in a busy gym. Strangers (men in particular) can also upset him.
At this school the office administrator was surly and unhelpful. A request in late August for Charlie to see the school and his classroom was greeted with surprise and mild resistance on the phone and then clear disapproval in person. On one occasion I arrived at 2:30 p.m. to pick up Charlie and take him home. This early departure had been prearranged with the teacher to facilitate dismissal with the arrival of buses for the other kids in his class. I reported to the front desk on arrival and explained I was there to pick up Charlie. I was briskly informed that dismissal time was 3:00 p.m. and directed to a bench near the doorway to wait. I waited for 20 minutes until I heard crying down the hall. Charlie who could tell time and knew when Grandma was supposed to be coming for him, was in tears and on his way to a full melt down. At 70 years of age- and no Serena Williams- running after a hysterical Charlie as he bolted out of the school and charging toward a busy four-lane street, was a harrowing experience. We were nearly hit by an oncoming car. Walking him down the sidewalk to where my vehicle was parked in a nearby strip mall and finally getting him safely into the car was an experience I will not soon forget.
Another disconcerting incident happened when Charlie’s parents finally managed to get a meeting with his school principal in October. They had been hoping to discuss Charlie’s self-regulation issues and how his attendance at school three days a week concurrent with his ABA therapy would help with his eventual transition to full time school. First on their agenda was to request help loading Charlie on the school bus every afternoon by asking the driver to refrain from playing loud music while Charlie was on board. They also wanted to know if they could please be informed in advance of any staffing changes that would affect Charlie. Instead what transpired was a strange, unproductive conversation completely irrelevant to Charlie’s placement, education and development. It was clear this principal had scant knowledge of the autistic mind. She seemed to have no idea or even interest in what an ABA program was or how it worked. “Not everyone goes to university,” she mused. Focusing on what Charlie might be doing next year was as far ahead as his parents could contemplate. University was the farthest thing from their minds.
School bus woes
Some school bus drivers like to have the radio on while they work. Few people understand how debilitating the sound track is for Charlie. He cringes in the presence of piped in music in elevators, stores, or office waiting rooms. He covers his ears when announcements burst out of public address systems. We carry a head set for ear protection with us everywhere to deaden ambient sound. At Charlie’s first school, the teachers, the E.A.s and the principal made sure every driver was well informed. When they understood and knew better, the drivers were kind and compassionate. You may not have the same driver every day but diligent, caring school staff did their very best to ensure that Charlie could make the trip home safely and without distress.
Not so at school # 2. No interventions here. The driver loved her country and western station and it blared loudly. For your average neuro-typical child this is probably no big deal and some might really enjoy it. On the days when I collected Charlie at the end of the driveway, I found him struggling in his seat. We had already arranged for a restraint on his seatbelt to prevent him from bolting and running away into the community every time the bus stopped to discharge a child. School bus drivers are not permitted to touch children and the risk of Charlie running away was very high.
When I climbed into the bus and unfastened his seat, he would bolt from the vehicle and tear up the driveway. Grandma after collecting his school bag, hat and
mittens and scrambled after him. Charlie, trapped in a bus-capsule well-equipped with super-speakers, was in a whirlwind of pain- screaming, thrashing, kicking out, manic panic and bolting. It’s a kind of distress not to be wished on anyone. Watching a grandson suffering needlessly is crushing. On many occasions bus drivers did not heed our pleas to please turn off the radio. We pulled a little boy off the bus shaken, crying and inconsolable for hours while the driver was shaking his/her head and muttering what a spoiled child he was.
Safety issues are enormous when you’re dealing with children on the autism spectrum. At the age of five, Charlie was terrified of men he did not know. He couldn’t answer questions. He did not know where he lived or his phone number. He had no sense of traffic safety and he would have had no idea how to ask an adult to help him. We always kept a firm hand on Charlie and knew not to turn away for a second. Now at age nine, he knows his address and phone number but he can’t answer questions if he’s under duress. It was a startling revelation to my daughter to see how two school principals could be so different. One was welcoming, inclusive and advocated for Charlie’s safety. The other dismissive, disinterested and indirectly caused trauma and harm to our boy.
The aim to combine therapy and school seemed like a good plan at the time. Charlie’s kindergarten teacher, his principal and his private clinicians all wanted to give it a try. But after he changed schools, we realized we could not trust that he would be safe. In retrospect we saw it was a mistake to try to keep Charlie in school. As soon as the opportunity presented itself and the liberal government backed down on its plan to limit therapy to kids over age five, Charlie’s parents jumped at the chance for the new autism program funding and enrolled him in full time ABA therapy where he is today.
A near disaster
One morning a friend called Charlie’s mom for help and support. Without any explanation or apparent cause, her child’s principal had reported her to Children’s Aid. The CAS worker would be coming to her house for an interview and she wanted a supporter to be present. The mom had taken her autistic son to school one morning dropped him off safely. She decided to stop quickly at a bargain store before going to work. When she emerged from the store, she saw her six-year old standing in the middle of a six lane intersection just across from the store parking lot. She dashed into the street and retrieved the child, then took him back to school. She angrily upbraided the school administrator. Autistic children known to run off require constant observation. Charlie’s mom and her friend met the CAS worker at the appointed time. To their relief and surprise the social worker stated, “Don’t worry. I know this principal and my job is to protect the child whether at home or at school.” We never did learn why Children’s Aid had been called nor did we ever see any outcome from the incident- just business as usual.
“Exclusion” is an admission of failure
Violent outbursts in classrooms- especially among the kindergarten and primary age kids- are on the rise according to recent media reports. Teachers and education assistants report receiving serious injuries. They feel helpless when they occur. And what about the other kids in the class who are observers and victims of violence? No one should go to work to be assaulted. You can’t just dump a child with severe behavior problems into a class of 25 grade two kids with one teacher, expect that teacher to cope alone, and then accept the blame for failure.
Recently school principals have been turning to a band aid approach called “exclusion.” It means sending the child home for a day or part of a day. Or it might be for a few days, weeks or even months. It is done without written records of any kind so it’s impossible to track how widespread the practice has become. Unlike suspension or expulsion procedures used in disciplinary instances, no letter is sent to the child’s parents stating the reason or exact time period for the child’s exclusion. Parents get a phone call telling them to come to the school and take their child home early. Principals usually cite lack of safety due to inadequate staffing as the reason for sending children home. Autistic children are often “excluded” from class trips and from participating in school assemblies, concerts and plays. Extensive exclusion for weeks or months on end robs children of their schooling. The failure here belongs to the schools who neglect their duty to accommodate students with disabilities and do not provide proper staffing. Ultimate failure belongs to the provincial government’s funding formula which is the cause of inadequate staffing.
Ontario is due for a Special Education overhaul
As it stands now, parents have to jump between services provided by Ministry of Child and Community Services and the Ministry of Education. If these ministries would collaborate and open their doors to properly fund and support ABA in the classroom, kids like Charlie might transition into the public education system more quickly. That means training frontline staff- both teachers and education assistants- as behavior analysis practitioners. It means removing the silos between ministries and collaborating rather than forcing parents to negotiate for supports.
Importing ABA into the province’s schools will go a long way toward shrinking the therapy waitlists for school age autistic kids. It would also ensure ABA for kids in northern and rural Ontario. New Brunswick has set up a training program for its education assistants in autism spectrum disorder (ASD) and behavioral intervention to provide evidence-based support for autistic students. There is an agency called Ontario Association for Behavior Analysts (ONTABA) which Lisa Macleod, Minister of Children Community and Social Services, likes to refer to as self-interested, that is ideally positioned to establish certification credentials and create training programs for school board workers.
There are 340,000 kids with special education needs in Ontario. That’s one kid is six. They are by no means all autistic but all deserve support. However, there seems to be very little accountability for special education funding and a great deal of inconsistency in program delivery across the province.
Doug Ford: Slow down and rethink this
Up until now school boards have not successfully dealt with autistic children. One of the problems is a lack of co-ordination between the Ministry of Education, the Ministry of Child and Social Services and local boards of education. The hodge-podge of therapy service providers, provincial therapy funding bureaucracies and the schools don’t talk to each other let alone work together. The result is not only waste and mismanagement but poor service to children. The other problem is ongoing underfunding at the school board level. Currently there isn’t enough staff assigned to special needs children in the system. Neither teachers nor education assistants have the training necessary to work with them. There are successful models in the U.S.A. where therapy and schooling are integrated. The Ford government has to sit down with the real experts and come up with a plan before disaster hits the schools again in September.
Even if a child has had ABA or IBI therapy before entering school, they still need support. They are seriously disadvantaged compared to their neuro-typical classmates. If they have behavior problems, we should be providing programs and supports just for them so they can integrate into a classroom. Special education students and their teachers cannot succeed without a team of professional supporters which include psychologists, community and social workers, and trained therapists. All children have the right to have an education, to be in a school. When children identify as special needs, we should be providing programs to meet their needs. That means providing the resources to help children, teachers and the whole school community.
Provincial governments whether Liberal or Conservative have to come to terms with the fact that therapy services and programs for special needs kids in schools don’t come cheap. One therapist per child is costly but it’s effective and cheaper in the long run than untreated autistic children growing to adulthood. Today an autistic adult in crisis is dealt with either by hospital emergency or the police. But cost cannot be the determining factor for everything. We should be supporting families with kids on the spectrum and not expecting them to sell the family home to pay for their child’s therapy because it’s the right thing to do.
Janet Bojti retired after 25 years teaching ESL to adults in the Continuing Education Division of the TDSB. She is a an active supporter of the Campaign for Public Education and the Toronto Educational Opportunity Fund which fundraises for nutrition programs in schools in Toronto’s neediest neighbourhoods