Is the most common therapy for autism harmful or helpful?

After seven weeks in the child mental health unit at the IWK Health Centre in Halifax, Carly and John Sutherland’s nine-year-old son, Callum, was returning home, and his parents were terrified. Their wounds from his violent outbursts—bites and scratches up and down their arms—had mostly healed but his behaviour hadn’t changed, and the Sutherlands didn’t know how they were going to keep themselves and their younger son, Henry, physically safe.

Six months prior, Callum, who is profoundly affected by autism, had started losing his limited communication skills and lashing out in frustration. When his outbursts became so extreme that the Sutherlands and the staff at his school feared for their safety, Callum was admitted to the hospital. But he couldn’t stay there forever. Carly took a leave from her job as a special education teacher and scrambled to assemble a team of specialists to support Callum at home.

One of the key members of Callum’s team was a board-certified behaviour analyst (BCBA), who drew up a plan using applied behaviour analysis (ABA), the most prevalent therapy for children with autism in Canada.

ABA uses strategies intended to decrease problematic behaviours and increase good behaviours. Through close observation of the child, data on these behaviours and what triggers and reinforces them is collected and analyzed. Desirable behaviours are broken down into small increments and positive reinforcement—such as praise, a treat or screen time—is used to reward each step in the desired direction. Over time, prompts and rewards are scaled back as the behaviour becomes habitual. If this sounds like what you did to potty train your child or teach them a bedtime routine, it is.

“A lot of the things that parents do every day are actually derived from behavior analytic procedures and principals,” says BCBA Brenda Fossett, an instructor in the ABA program at Capilano University in North Vancouver. “An ABA program is really just a much more thoughtful, structured application of those kinds of strategies, along with assessment.”

Families can receive provincial government funding for ABA, which can be delivered at home or in a centre. With one in 66 kids aged between 5 and 17 diagnosed with autism in Canada, a significant amount of time, money and effort is being invested in ABA. The therapy has been used since the 1960s, and several studies have shown it’s effective in changing behaviours, raising IQ and helping children develop communication and social skills. But controversy surrounds ABA, with some people with autism saying it causes lasting emotional harm by forcing them to perform pointless and uncomfortable tasks and training them to look less autistic. Indeed, much of the literature on ABA says its ultimate goal is to make autistic people appear indistinguishable from their peers.

In the case of the Sutherlands, that certainly wasn’t the objective for Callum. They wanted to get to the bottom of what was causing their son’s behaviour and help him develop coping and communication skills and stop hurting himself and others. Institutionalization was already on the table, and the Sutherlands desperately wanted to keep their family together.

Callum’s team determined that his aggression was linked to escaping a task or getting people out of his space. A behaviour plan was developed to help him tolerate company and use language to ask people to leave. When he said “go” or “all done,” his reward was a gummie and being left alone. It was challenging at first: the Sutherlands and the support workers wouldn’t leave unless Callum used his words, which was much more effort for him than using his body. But eventually, making verbal requests became his default. Today, his violence is one percent of what it was when he returned home six months ago.

“ABA principals saved our family,” Carly says. “If it were not for ABA therapy, Callum would no longer be able to live with us. He’s so much calmer. He’s able to cope with life better.”

As a parent and a special education teacher, Carly is well aware of the concerns with ABA and has some herself. She doesn’t agree with ABA being used to hide a child’s autism by extinguishing telltale signs such as hand flapping and making repetitive noises. These behaviours are known as stims and they serve an important purpose: they help people on the spectrum regulate their emotions and relieve their anxiety. Other strategies to make children appear neurotypical can also be counterproductive, she says. For example, trying to get a child with autism to maintain eye contact while speaking can be stressful and make it difficult for them to focus on what they want to say.

Trying to pass as neurotypical, when one is autistic, is known as “masking” or “camouflaging,” and a growing body of research shows it can lead to stress, exhaustion and depression. “ABA may make us look normal, but that is an illusion,” says Vivian Ly, executive director of  Canadian Autistics United. “The outward appearance of improvement comes with emotional harm and increased anxiety.”

Children with autism often prefer analytical to imaginative play and enjoy focusing on one activity, and ABA may try to teach them play skills that go against their nature. When Callum was in preschool, his teachers used ABA to teach him to put together Mr. Potato Head and build Duplo towers, but he had zero interest in those activities and just wanted to focus on music. Carly put an end to the play skills therapy. That said, she credits ABA with helping Callum learn valuable life skills such as feeding himself, using the toilet and washing his hands. “The ultimate goal of any therapy should be to build independence and quality of life for the individual not force conformity,” she says. “ABA can be a good thing if it’s used for good and not evil.”

But not everyone agrees. Anne Borden, cofounder of Autistics for Autistics, says ABA is fundamentally flawed and problematic regardless of what skills it’s seeking to teach. “Autistic people don’t like the experience of ABA,” she says. “It is deeply upsetting and invalidating and takes away our power, confidence and sense of self-worth and competency.”

Borden calls ABA “compliance training” and says it forces children to ignore their instincts and boundaries, which can impact future judgement and relationships and make them more vulnerable to abuse. Children are not taught the importance of consent, she says, and may suffer lasting trauma as a result of ABA.

A study published in 2018 in the journal Advances in Autism found that nearly half of children and adults exposed to ABA had post-traumatic stress disorder (PTSD) and were 86 percent more likely to experience it than their unexposed peers. According to the study, trauma sets in soon after treatment begins. For example, a three-year-old child receiving 20 hours of ABA a week would experience severe PTSD within five months of treatment.

Children who undergo intensive ABA, which can involve up to 40 hours of therapy a week in a centre, are also denied a normal childhood, Borden adds. “To me, as a mom, that’s the saddest part,” she says, calling ABA “the ultimate segregation.”

Fossett points out that ABA is an evolving field and has changed over the years. In the past, ABA was highly structured and adult-directed, and often happened in a clinical setting. Today, therapy is more child-led and takes place in natural contexts, such as the family home, the park and the grocery store. Physically painful or demeaning punishments, such as slapping, yelling at the child or even administering electric shocks, were also used in the earlier versions of the therapy, back in the 1970s, but are considered unethical today.

In 1998, the Behavior Analyst Certification Board was established, and Fossett recommends families look for certified professionals as well as those whose approach fits with their values. As for the ongoing concerns with ABA, Fossett says it’s important to listen: “I hope that one day we can find a happy medium because adults with autism have important things to say and as professionals, we should be listening to them.”

Canadian Autistics United and Autistics for Autistics would like to see other therapies and support services explored and funded. While the organizations don’t endorse a specific method, other options include psychotherapy and interventions that take a developmental approach, such as Floortime. Investments could also be made into augmentative alternative communication (the use of technologies and techniques to communicate), classroom modifications, and anti-discrimination and anti-bullying training for students and staff to promote acceptance of neurodiversity.

So where does this leave parents who are trying to figure how to best help their children with the “early intervention is best” message ringing in their ears?

“I think it’s important to remember that your child is still your child who you love and not someone to be fixed or repaired,” Carly says. “You have to be sure that you’re looking at any intervention through a critical lens and asking if it’s something that is going to help your child and improve their quality of life.”

Read more: The therapy that can help with your kid’s big emotions An accurate test for predicting autism in babies could be on the horizon