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.
What does the research say about ABA?
In 1987, Ole Ivar Lovaas published the results of a long-term controlled study in which he provided intensive behavioural treatment (40 hours a week of 1:1 therapy) to 19 preschool-aged children, and what he described as “minimal” treatment (10 hours or less a week of 1:1 therapy) to 40 preschoolers, all of whom had been diagnosed with autism. The goals of the treatment included reducing children’s self-stimulating and aggressive behaviours, increasing their use of language to communicate, and increasing their cooperative interaction with adults and peers. Each small accomplishment was rewarded (with praise, a hug, or a small treat) and each undesired behaviour was met with an “aversive”—being ignored, or giving the child a time out, or, “as a last resort” Lovaas wrote, telling them “no!” loudly or even giving them a slap on the thigh.
Of the 19 children in the treatment group, nine, or 47 percent, “achieved normal intellectual and educational functioning,” while only two percent of the control group did. “School personnel describe these children as indistinguishable from their normal friends,” Lovaas wrote in his discussion of the study.
This research was a major factor prompting the development of behavioural programs for children with autism throughout North America. Ontario introduced funding for IBI in 1999 (funding for less intensive ABA was added later), and Adrienne Perry, a psychology professor at York University, led a file-review study of outcomes for 332 children who were in the program during its initial five years. The results, published in 2008, showed that about 50 percent of children improved in terms of autism severity, switching categories either from mild-moderate to non-autism, or from severe to mild-moderate or even non-autism. In terms of their cognitive levels, nearly two-thirds of the children showed clinically significant improvement, making gains of 12 months or more in their “mental age.” And the group’s overall rate of development effectively doubled.
Her findings suggest that, “for some kids, if they can get a couple of years of high-quality IBI when they’re very young, it will change their developmental trajectory,” says Perry. “Even though they may have been delayed, they will learn at a faster-than-normal rate of development—faster than a typically developing child—so that they are getting closer to the trajectory that they should be on, theoretically, for their age.”
She hastens to reiterate that this only happens for some children. “We have to keep saying it, because of course parents want it to be their kid,” she says.
A 2018 Cochrane review of the literature on IBI found weak evidence for its effectiveness. This was due to the fact that just one randomized control trial was included, as well as the relatively small sample size of the studies reviewed. “There’s a problem with those kind of reviews, using standard medical methodology,” says Perry. “There are almost no RCTs because it’s impractical and unethical to do them.” Some ABA research follows group design which compares outcomes for people who received treatment against outcomes for people who did not, but the bulk of it follows single-case design, which looks intensively at specific interventions offered to a small number (five or six) of individuals. “[Single –case design] is a different type of methodology, but has criteria which make it an experimental design, and is considered valid,” says Perry.
Both the National Autism Center and the National Professional Development Center on Autism Spectrum Disorder undertook comprehensive reviews of the ABA literature, and their findings were analyzed and summarized by ONTABA’s task force, of which Perry was a member. “The evidence is actually quite strong compared to anything else in child psychology—it’s the strongest there is,” she says. This evidence is for both ABA and IBI, and includes some programs implemented by parents who have received training in ABA delivery. These programs, however, tend not to show the same magnitude of gains as clinic-run programs do, says Perry. They are also not typically delivered exclusively by parents—most families who undertake these programs hire professionals to help them.
Perry also points to a waitlist control study of IBI she co-authored in 2011, which found the treatment group to show higher scores for adaptive and cognitive skills and lower scores for autism severity. And recently, she led a long-term follow-up study of children 10 years after they received IBI which found that those who had shown significant gains from the program in terms of cognitive and adaptive skills and in terms of autism severity had largely maintained these gains.
In the last 10 or 15 years, some adults who have autism—some of whom received ABA as children—have been speaking out against the therapy for its efforts to make them “normal” rather than accept their differences. They recount painful experiences of being punished for and made to feel ashamed of self-stimulating behaviour and the way they relate to others. They feel that the goal of being “indistinguishable” from people who don’t have autism was forced on them, and may not have been their own goal. One young man who received ABA from age two to five and ultimately integrated into a mainstream kindergarten class told the Atlantic that rather than try to change a child’s behaviour to mask their autism, the focus should be on “trying to figure out why an individual is exhibiting a certain behaviour.”
People who deliver ABA and IBI—and parents of children who receive it—would argue that this is largely what the therapy aims to do. At Surrey Place, the treatment plan for each child is highly individualized. A baseline assessment establishes each child’s functioning in multiple areas when they first start the program—whether they are able to respond to their own name, for example, or learn through imitation, or get dressed and use the bathroom. Then a program is designed, featuring hundreds of discrete “trials” to help children learn the skills they are missing. A trial might require a child to sort toys by colour, or mimic the therapist tapping on the table. Therapists record the results of each one, and the results are graphed and reviewed on a daily basis. The details of what helps each child move forward are carefully noted, as are the triggers that lead to tantrums and tears. “When we understand why a behaviour is occurring, we can find strategies to help the child achieve what they want more effectively, efficiently, and safely,” says Nancy Freeman, who also works at Surrey Place.
Self-stimulating behaviours are redirected, as was the case with the little boy who was flapping his arms while working with the nesting cups. Staff take a neutral, not punitive, approach; the goal with this boy was simply to block his hands in an effort to help him focus, says Freeman. “If it didn’t interfere with his learning, we wouldn’t be addressing it,” she says. When the boy intermittently zigzags his head from side to side, for example, no redirection is provided, as this does not interrupt his activity.
Most children in this program are expected to transition into regular school after two or three years. A few may manage in mainstream classrooms without any special help. Others may need to go to specialized schools, or be withdrawn from class for special education, or be referred for intermittent blocks of focused ABA—a lower-intensity intervention to address specific skills or behaviours.
And a few—typically those who are lower functioning intellectually and who have more severe autism—may be recommended for ongoing intensive ABA. These might include kids who are self-injurious or harmful to other people, Perry explains, kids who eventually need to move into a group home. “They’re never going to be independent, they’re never going to be able to read a book or have a fluent conversation,” she says. “But they can be better, they can be more independent. They can learn to make their beds, they can learn to ask for basic needs and wants. ABA is the best way of teaching those things. It will help them to achieve their potential as best they can, whatever that is.”