The little boy is four or five years old. He sometimes makes sounds but he doesn’t speak in words. Right now he’s working on fitting four nesting cups together. He puts together the two biggest and two smallest, then takes them apart and tries to wedge the second-biggest into the third-biggest. A therapist sits beside him, watching. Another therapist stands behind him, gently moving the boy’s hands back down to his sides each time he waves or flaps them. After several seconds, the therapist at the table steps in to help the boy fit all the cups together. The therapist says, “Good job!” and raises both palms—the boy has achieved the goal of staying on task. The little boy smiles and gives him two high-fives.

This little boy is receiving intensive behavioural intervention, or IBI, at Surrey Place in Toronto. IBI is a form of applied behavioural analysis, or ABA, which has frequently been in the news since early February, when the Ontario government announced changes to the province’s funded services for children with autism. Currently, children who have received a diagnosis of autism from a psychologist or physician are assessed at an appointed agency, such as Surrey Place, which then recommends the level of service needed. Public funding has been available for as much treatment as is recommended until the child turns 18, at which point they transfer to the adult system if necessary.

Starting April 1, children with autism will be eligible for a capped amount, or what the Ontario Ministry of Community and Social Services has called a “childhood budget.” Children under age six will receive $20,000 per year, and children ages six to 17 will receive $5,000 per year. The money will flow directly from the Ministry to the families. (Currently, families have the option to receive “direct service” through a publicly funded program, or “direct funding,” via which they contract services themselves. The new program will be exclusively the latter.)

The province said the primary reason for the change was to expedite service to the 23,000 children on the waitlist, which is 18 months long on average in Ontario. (There are 8,400 children receiving funding through the program at present.) The government emphasized the importance of early intervention in autism—research has shown that intensive ABA is most effective when children are very young. This is the rationale for “front-loading” the funding, with four times as much available annually in the preschool years.

But while $20,000 may cover the annual cost of some less-intensive ABA services, it is only somewhere between a half and a quarter of the money needed to fund a year’s worth of IBI. (IBI includes three tiers of service delivery—a direct therapist, a senior therapist, and a certified clinical supervisor.) Plus, the capping of expenses for older children does not allow for possible intensive therapy in the teen years, when behavioural difficulties can flare up. This is why so many parents reacted to the Ministry’s announcement with anger and trepidation.

The Ontario government has already adjusted the new plan. On March 21, it announced that there would be no income test to determine how much each family was eligible to receive. As well, children currently receiving services can continue to do so for another six months. And the province has said it will continue to consult with parents over the summer about the details of the program.

But unless the maximum annual amounts are changed significantly, parents whose children are receiving or have been recommended intensive ABA are faced with either paying for most of it themselves, or losing access to what is considered the standard of care for autism. ABA is seen as the only treatment that offers any hope of improvement from a condition that, in its severest form, can severely impede a person’s ability to learn, communicate, have relationships, and eventually become an independent adult.

What we’re talking about when we talk about ABA

ABA has a theoretical basis in behaviourism, which considers people’s behaviour to largely be a result of conditioning. In other words, people learn how to respond to different situations according to whether they receive positive or negative feedback. ABA applies this theory to study an individual’s behavioural patterns and then design and implement specific interventions with the goal of improving “socially significant behaviour to a meaningful degree,” according to a task force commissioned by the Ontario Association for Behaviour Analysis (ONTABA) in 2017. ABA has become synonymous with autism treatment, but it is used in many other fields, including dementia, psychiatry and even sports.

While IBI, the therapy described above, is a form of ABA, it is useful to distinguish between the two in the context of autism. In Ontario, most modalities are classified as one or the other. “IBI” refers to 1:1 treatment that takes place 20–40 hours a week, while “ABA” is a broader category of interventions which take place anywhere from one to 10 hours weekly, is offered individually as well as to groups of children, and takes myriad forms: after-school tutoring, safety training in the community, in-school sessions of Picture Exchange Communication System, to give a few examples. ABA interventions are often offered in blocks, for example eight weeks of therapy, then a break, then another eight weeks. Nancy Freeman, psychologist and clinical director of Toronto Autism Services—a partnership of six agencies that offer services to children and families—estimates that in her jurisdiction, about one in four children receiving services are in intensive therapy. In 2016–17, for example, 2,078 children and youth received ABA, while 494 received IBI.

According to ONTABA’s definition, all forms of ABA (including IBI) must be closely monitored by a Board Certified Behavior Analyst (someone with a graduate degree in a related field as well as other specific qualifications), and be subject to ongoing data collection, analysis, and modification.