ABA: Inside the controversy surrounding the most popular therapy on autistic children in Ontario – The Pointer

Who decides what is normal?

Applied Behaviour Analysis—ABA—is a standard autism therapy in Ontario, the only publicly funded therapeutic program for autistic individuals until 2019, yet more and more autistic advocates say it’s simply a form of conversion therapy. 

According to the Behavior Analysis Certification Board, ABA involves teaching behaviors “essential to functioning effectively in the home, school, and community. ABA can also decrease severe problem behaviors that endanger health and safety, and limit educational, residential, or vocational options.”

ABA is used in a variety of fields, such as brain injuries, or dementia, but a large portion of ABA clientele in Ontario are autistic youth. 

The practice uses an aversive/reward system to attempt to train children to comply with directions, similar to dog training. This ranges from denying play time, to taking away comfort objects, to extreme cases outside of Canada where the use of electroshocks are utilized, such as in the Judge Rotenberg Center (JRC) institution in Massachusetts. 

Approved behaviours reward the child with something they like– such as a can of pop or a toy car.

Unlike other therapy treatments for autistic children, ABA can be a lifestyle. A total of 30 to 40 hours are recommended to be spent per week, leading to $30,000 to $90,000 per year. 

In recent years, questions have been raised about the objective of ABA therapy when used on those diagnosed with autism. While there’s little doubt among the medical community that the approach is effective at changing behaviour, and that its proponents have the well-being of individuals in mind, there is growing concern within autistic communities around assumptions about what is normalized behaviour.

The push against the practice has been largely done by autistic individuals and their families– who have dubbed it “autistic conversion therapy.”

Autistics for Autistics (A4A) Ontario, a Canadian autistic led-and-run self-advocacy group, is vehemently opposed to the practice. 

Anne Borden King, the organization’s co-founder, said the idea of ABA on autistic people is to condition someone to look and behave like someone they’re not—conforming to social standards of behavior rather than actually help them with tools to assist in day-to-day living. 

“ABA tries to decondition things that are natural and helpful to autistic people. For example, flapping of hands,” King said. 

“When they’re happy people may flap or they may walk or they may hop or do certain things with their body to regulate their emotions. Other therapies acknowledge that flapping your hands can be a really good way to help regulate and calm themselves down—it’s a great strategy that autistic people came up with inside their own bodies to help from being overwhelmed.” 

A study in 2018 by Henny Kupferstein, doctor of psychology from Saybrook University, found that nearly half, 46 percent, of ABA-exposed participants exhibited posttraumatic stress symptoms (PTSS). 

ABA satisfaction ratings for caregivers averaged neutral or mild satisfaction. In contrast, adult satisfaction with ABA was lower on average and also tended to take on either extremely low or extremely high ratings. Exposure to ABA predicted a higher rate and more severe PTSS in participants, but the duration of exposure did not affect satisfaction with the intervention in caregivers.

King called ABA an “outmoded, not evidence based, and often cruel approach.”

“We feel that kids should have the right to enjoy their childhood and have a nice childhood and have a quality of life in childhood, and that ABA robs them of the quality of life and replaces it with a lot of trauma and segregation from their peers,” King said. “It’s really terrible overall for the mental health of youth, and like gay conversion therapy it shouldn’t be funded at all.”

The practice isn’t something parents just have to look for at home, with ABA also implemented in schools.

According to Ontario public policy memorandum 140, all educational assistants in the province’s schools are required to be trained in ABA.

“What that means is they have a lock or monopoly on educational assistants in schools, they control all of that and they profit from most of that, so they have different multiple revenue streams to make their service the dominant service,” King said.

With ABA baked into Ontario’s education system, advocates state it leaves parents of autistic children with limited therapy options.

(CDC/Unsplash)

“They’re not the dominant service because they’re the best, they’re just the dominant service because they’re extremely aggressive in how they market themselves, and they do that at the expense of families and schools having real choices in terms of what kind of therapy they want to have for their kid.”

In 2019, Ontario started funding speech pathology and occupational therapy, but other therapies such as relational development remain unfunded outside of ABA.

“Everyone wants to get their kids into speech pathology and things like that, and parents want to do something different—the problem with the system in Ontario is that it’s systematically locked into giving funding preference to ABA. So sometimes families are on the fence and don’t know if they want to do ABA, but they have to do it because it’s the only funded choice available for them.”

Susan Gadsby, whose real name is being withheld for concerns of her son’s privacy, is one Ontario parent who pulled her son out of ABA treatments.

Gadsby sought help for her kindergarten-aged son following difficulty with fine motor skills and issues regulating his emotions that ended up in aggression towards his classmates. This led him to an autism diagnosis, and a straight path to ABA. 

For her that meant out of pocket expense workshops at the ErinoakKids Centre for Treatment and Development in Brampton, and an ABA based routine in schools. 

In the workshop “It Takes Two to Talk,” Gadsby said she was taught to withhold items her son likes to get him to speak. 

At school, Gadsby said her son was separated from his classmates. Staff would take away objects of special interests that he used to regulate himself. Stimming was also banned.

Stimming is any set of actions that neurodivergent people, including autistic or individuals with ADHD, repeat rhythmically. It’s a way neurodivergent individuals use senses to self-regulate. This might include soft humming or using a tool such as a fidget spinner.

“He was coming home and melting down every day,” Gadsby said. 

“My son was timid, he really didn’t feel all that comfortable asking questions. He wasn’t really sure what he could do. Children are explorative and interested and want to learn, I didn’t see that from him.”

He started to ask her strange questions like “why am I like this?” and told her that he felt “wrong inside.”

“The problem is so deep that they gave me his safety plan and stimming behaviour is actually considered a level 1, escalating behaviour. So if an autistic child is stimming in a school setting they are actually taught to curb that behaviour and say, ‘This is bad.’”

The education was effective in teaching him that neurodivergent behaviours were wrong. Gadsby said after beginning ABA her son would get angry with other classmates for being non-verbal, something which ABA forbids. 

“I think that’s a great reflection of what was done to him and what was expected of him. He was very limited speech for quite a while, and as he gets older it develops more and more at its own pace—but the pressure that was put on him to talk he then translates to the classroom,” she said.

“I try to tell him… everyone communicates differently, but it comes out as anger because that’s what the educators are doing to him. ‘You need to talk, you need to talk.’ Instead of giving another mode of communication and teaching the general public, ‘this is how some people are going to communicate.’” 

A series of different factors led her to begin questioning whether ABA was something right for her son. One was the pandemic, and the cutting of funding for mental health under the Premier Doug Ford’s PC government, something she referred to as a “blessing”—although she certainly didn’t see it that way at the time. 

Working from home for two weeks at a time in a hybrid virtual environment gave Gadsby an opportunity to observe her son doing schoolwork, and how he would steer his own learning.

“It was like meeting him for the first time, it was kind of cool. We really got to see what bothers him and then we got to start to ask him, ‘Hey, if something’s bothering you can you tell us,’ because we’ll all plan together.”

As a result they were able to come up with a sensory diet, a personalized activity plan that provides the sensory input a person needs to stay focused and organized throughout the day.

“I think everybody has this goal of, ‘You can’t tell [they are autistic].’ I want people to tell because I think autism has a lot to offer the world.”

After dropping the practice and specifically requesting accommodation, Gadsby said her son was given access to a computer by the school so he can type and select answers, which completely revolutionized his classwork. This was something he had previously struggled with due to his fine motor skills.

“Instead of having them focus on developing those fine motor difficulties, I had them give him an alternative—things that he’s entitled to by law, accommodations,” she said.

“It’s like completely different. He comes home and plays, he hugs and kisses everybody and he makes dinner and he’s helpful.”

Gadsby said removing him from ABA in school wasn’t without backlash, eventually leading to her filing a complaint about her son’s teacher. 

“I had a conversation with her about the reward system and how they were impacting home life,” Gadsby said, explaining that she couldn’t get him into their family vehicle without bribing him with a reward. “She was kind of, ‘School doesn’t translate to home.’” 

Support for the practice varies within the school system, which the support staff are required to be trained in.

Nancy Marshall, a Toronto child and youth therapist, said she was introduced to ABA in 2009 as a child and youth worker in schools with a private agency. At the time, she had a college diploma and Bachelor of Arts in Child and Youth Care (CYC).

Marshall said she never received any formal ABA training at a postsecondary level, with it all coming from on-the-job training, which are common for Ontario youth workers, educational assistants and teachers.

“I received loads of one-to-one training in ABA and a Certificate for Educators in 2016, mostly on how to collect data, watch for patterns of behaviours, and use reinforcement (reward) schedules to teach what are deemed to be ‘pro-social’ behaviours,” Marshall said.

“I always felt uncomfortable with the idea in ABA that there are only four reasons for behaviour—sensory seeking/avoiding, escape from demand, attention seeking, or access to tangibles. That is all I was taught to look for and record.”

She stopped practicing ABA in 2016, due to concerns with the therapy. Those concerns stemmed from there being little to no focus on mental health in practical applications of ABA, as well as ABA being prosocial behaviour training, geared toward compliance with neurotypical norms of “obedient” behaviour. 

Marshall said the ABA approach did not include typing or spelling to communicate. 

Currently she advocates for AAC technology in schools, which she refers to as a “priority” for non-speaking students.

“I am grateful for my CYC training because I was trained in relational and compassionate approaches to supporting young people through a more holistic and trauma-informed lens. I always found my relational CYC approach at odds with the principles of ABA that I was taught to use. There was never any focus on mental health in ABA, and I had to add that approach in my own ways.”

Marshall referred to ABA on autistic youth as a “Victorian era and colonial value.” 

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“When the end users of a therapy don’t want to use it, don’t like it and are actively, passionately doing activism to stop it, people have to listen to that. These are the people who do the therapy saying, ‘It’s terrible.’”

– Anne Borden King, Autistics for Autistics (A4A) Ontario

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“I know there are school staff, administration, and licensed ABA practitioners out there trying to make change in this regard. I sincerely hope the overall focus of supporting neurodivergent young people shifts away from behaviour change toward genuine mental health and wellbeing, but I have not seen much evidence of that yet.”

When asked what advice she has for families choosing a type of therapy, Marshall said to make sure the child needs it. 

“Just because a child is neurodivergent, it doesn’t mean they automatically need therapy. If you find that they do need some support, choose therapists that understand what the autistic and neurodivergent experience is like. Find neurodiversity-affirming therapists and neurodivergent/autistic peer mentors for your children. There are also two free resources I recommend to parents when they learn their child is autistic.”

The first one she recommends is “An Autistic Parenting Guide by an Autistic Parent: ‘Autism, Moon’”, the second is “Start Here: a guide for parents of autistic kids.” 

“Although ABA as a field claims to be improving with a focus on rewards as opposed to punishment procedure, there are still so many problems with this idea of rewarding prosocial behaviour. There remains a fundamental lack of knowledge about autistic and neurodivergent experiences on a whole. The school system’s expectations for neurodivergent young people remain unreasonable and oppressive.”

In March, Chris Bonnello, a UK autism advocate, author and former school teacher, released the results of an international survey presenting the attitudes and experiences of 11,212 respondents, including 7,491 autistic individuals. In the survey he asked a variety of questions in the field of autistic personal experiences, among them was the respondents view of ABA.

The survey showed an extreme disconnect between the views of the practice by autistic individuals, versus parents of autistic children or even non-autistic professionals.

While it is an international dataset, and isn’t necessarily indicative of local practices and populations, it showed a concerning number of autistic people were saying no to ABA. 

Out of the 7,491 autistic respondents, only 1.63 percent of respondents strongly supported the use of ABA, compared to 79 percent which strongly disagreed with its use on children. 

The data pool for ABA-exposed respondents were significantly smaller, but among them the majority, 62.33 percent, strongly disagreed with the use of ABA on autistic children.

When it came to parents and caregivers of autistic children who have experienced ABA, they were mixed. A total of 24.28 percent strongly agreed with the practice, 20.9 percent agreed, and 26 percent strongly disagreed.

 

 

 

The survey of 11,212 respondents by Chris Bonnello of autisticnotweird.com found a significant difference in responses from autistic respondents and non-autistic professionals when it came to their views on ABA.  

Marshall referred to the ABA industry’s foothold as the “Autism Industrial Complex,” citing a 2021 paper delving into by the same name, published in the Journal of Disability Studies in Education.

“There are more and more graduate programs opening up around the world. It is often the only therapy option covered by insurance plans in the United States. It is soon to become a regulated field here in Ontario, which will mean that it will be covered by insurance plans here as well. It is often the only viable option for families who need to have their child’s support covered by an insurance plan. ABA is also still mandated in school systems and is recommended over any other intervention.”

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ONTABA

 

In Ontario, the push for the practice is from the Ontario Association for Behavioural Analysis (ONTABA), Affiliate Chapter of the Association for Behaviour Analysis International. 

Formed in 1993 by a small group of behaviour analysts in the province, ONTABA has continued to grow steadily, becoming one of the largest professional associations representing behavioural science and services in Canada. One of ONTABA’s 2020-2022 strategic priorities is to “provide leadership and advocate for ethical, effective and safe behavioural services in Ontario.”

The majority of its members provide therapy to autistic individuals and their families. ONTABA boasts that it contains members in education, nursing, healthcare and psychology.

The organization’s website has an entire page dedicated to “personal ABA successes,” which, at the time of publication, all come from parents of autistic individuals who received ABA.

Jaime Santana is the President-Elect of ONTABA, holding a Masters in Applied Disability Studies from Brock University with a focus on Applied Behaviour Analysis.

Santana said that, like any science, ABA can cause harm if misapplied. According to him, a properly applied ABA program will focus on the strengths of the individual and use them to remove barriers in their life.

“It is highly individualized, there is no approach to two different people which is the same, because we focus on the individual’s strengths and we build on those, not every individual has the same needs so it is highly, highly individualized,” Santana said. “We help reduce barriers, we help increase skills, and ultimately as I mentioned, it’s meant to increase independence—whatever that might mean to the individual.”

Santana said ABA is constantly evolving, and neurodivergent behaviours shouldn’t be targeted unless they create a safety concern.

“For example, I have a client who loves flapping, but also liked to work in the back of a restaurant working with knives and sharp tools. In those situations it was unsafe for him to flap while holding a knife or flap while people are carrying boiling hot water around him. In these situations we don’t teach the client to stop, we teach the client to do it in a safe place.” 

While preferred items are withheld, Santana said they never take necessities like water or food.

“What we may work with are treats or additionals. As it stands, I think we all work in a society where we receive those types of access to things when we do stuff alright. When we show up to work we can access things like cans of pop, etcetera. If we don’t go to work we’ll have a little bit of a harder time accessing that.”

Closely connected to ONTABA is the Ontario Autism Coalition (OAC) with a past president serving as head of OAC. ONTABA serves as one of their respected donors.

The OAC’s mission is to secure permanent, scientifically supported, government-funded therapy, treatment and services for individuals with autism and their families—which translates to ABA.

Bruce McIntosh, a founding president of OAC, said they simply want autistic individuals to have the therapies and other services that will help them live a better life.

“Masking, there are some legitimate situations where an autistic person needs to be able to put their autistic behaviours aside. For example, how about a job interview,” McIntosh said.

“If a person with autism wants a job in retail stocking shelves and the employer, they’re not so sure this person that’s jumping up and down, flapping their fingers in front of their face, staring at certain things for too long– they’re not sure if they’re going to be the best employee they want. Now you can make the argument they’re discriminating on the basis of disability, and often people do, but they got a case to make to. So to get the job you got to tone it down a little.”

Under the Ontario Human Rights Code, employers have a duty to make changes in order to meet the needs of workers with disabilities. According to the Human Rights Tribunal of Ontario (HRTO), most human rights claims are made on the grounds of disability.

McIntosh has a close personal relationship with ABA, putting his son through the practice, even though at one point he said it took his family close to financial ruin to pay for it.

“The reason is simple, it worked. He benefited from it, and he actually liked it,” McIntosh said. “This was a young man who was not speaking when he was nearly six years old. He was a runner, he would elope in sometimes very dangerous circumstances. His social skills were just about non-existent.”

While McIntosh said his son still has “some issues” he doesn’t encounter obstacles in his day-to-day life—which he attributes to ABA. 

In terms of the numbers of autistic individuals who oppose the practice, McIntosh said it is “absolutely ridiculous” to assign credibility, pointing to many autistic communities accepting individuals based on self-identifying themselves as autistic rather than a professional diagnosis.  

“There are people that claim to be autistic who oppose ABA, but they are not necessarily diagnosed and in many cases will publicly state they are self-diagnosed.” McIntosh said.

“You have so-called autistics saying they have some knowledge, usually, provably inaccurate knowledge of ABA, telling you that it’s a bad thing for autistics. I’d ask you if you think that’s a sensible argument when ABA is used extensively with people who have acquired brain injuries, with kids who have experienced fetal alcohol syndrome disorder, it’s used on a number of other fields.”

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The uncomfortable link between ABA and LGBT+ conversion therapy

 

Most people associate ABA with O. Ivor Lovaas, who authored Teaching Developmentally Disabled Children—but the practice itself was built off older roots using the work of BF Skinner in the 1930s and 1940s, who studied animals using electric shocks and other aversives to control animal behaviour. 

In 1974, Lovaas would co-author a study using conversion therapy on feminine boys in an attempt to prevent them from being gay.

“The two groups that he identified that he wanted to have ABA are autistic kids, and gay and trans kids. He was the founder of the most popular form of gay conversion therapy, he co-founded it with George Rekers,” King said. “They led to the suicide of many young gay men because they did this gay conversion therapy on them.”

In Lovaas’ book on ABA, he encouraged the caregiver to start with yelling “no” when the child exhibits neurodivergent behavior, before moving on to things that make them uncomfortable physically or psychologically such as making them lift heavy books for a period of time, or showing pictures of things the child fears. 

“If the milder aversives don’t work, try a swat on the rear. At the other extreme, painful electric shock has sometimes been used, but we advise against this procedure except in cases where the child’s life is in danger. Do not use it without professional supervision,” Lovaas wrote.

Although nowadays many, including McIntosh, denounce those extreme practices. ONTABA’s position is that Lovaas unethically misapplied ABA’s principles.

Florence Ashley, a jurist and bioethicist, a doctoral student at the University of Toronto Faculty of Law and Joint Centre for Bioethics, and an expert on conversion therapy practices, said even these milder forms have the same ethical problem.

Ashley began working on the study of conversion therapy practices in 2017, with a focus on the impact on trans individuals. In 2022, they authored Banning Transgender Conversion Practices: A Legal and Policy Analysis. Their work has also been cited by the UN experts report on conversion therapy.

“Lovaas, with George Rekers, really started a very destructively influential approach of conversion practices at UCLA (University of California, Los Angeles) which has really laid the groundwork for a lot of conversion practices targeting young children in the following decades, and even up to this decade,” Ashley said.

According to them, the similarities aren’t just that it had the same figures involved with LGBT+ conversion practices, but also the philosophy and methods. 

“Conversion practices are harmful, but unethical in excess of their harm, because fundamentally they are anti-egalitarian practices. They are practices that send the message that being a certain way is undesirable, and that is primarily predicated not on the perspective and needs of the person themselves, but the social environment,” Ashley said. 

“The social environment doesn’t like trans and queer kids so it tries to suppress that. These concerns are also things that apply to ABA which is fundamentally rooted in this idea that ‘looking autistic’ or ‘acting autistic’ is something undesirable and that we should try to alter, regardless of the priorities of the child and often without really taking their experience and perspective as the first point from which treatment should be proceeding.”

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Email: [email protected]

Twitter: @JessicaRDurling

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