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ASPartOfMe
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20 Jun 2022, 8:43 am

Inside the controversy surrounding the most popular therapy for autistic children in Ontario

Quote:
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.

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.

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.

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.

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.

“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.

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.

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.

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.

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.

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.

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.

Anne Borden King, Autistics for Autistics (A4A) Ontario

“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.

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.”

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.

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.

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.”

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.

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.

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


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.”

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.

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.”

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.


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Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


ASPartOfMe
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20 Jun 2022, 10:40 am

I had thought the ABA monopoly was unique to the United States.

I wrote the following about how the ABA monopoly creates a dilemma for the parents of Autistic children back in 2019.

‘Autism programs in America commonly do speech and occupational therapies but generally center around ABA. It is rare for an autism program not to have ABA therapy.

When parents are looking to support their newly diagnosed autistic child ABA will be recommended by most of the experts, they often won't hear a conflicting opinion.

Let's say for whatever reason the parents decide they do not want ABA for their child. They will have to likely have to look elsewhere besides their school district and unlike with ABA they will likely have to pay out-of-pocket. They may have to move far away especially if they live in a rural area. Moving far away means the parents will have to quit their jobs and lose their local support network. Most importantly such a radical change might be a terrible setback for their change averse autistic child. And after finding a therapy they like there are pretty decent odds that person will be a quack, an outlier, with little or no peer reviewed studies to back up their claims.

Many families can not to afford to pay out-of-pocket never mind just picking up and leaving. What then? They can home school but most are not qualified to home school an autistic child.

The autism wars are usually defined as Autism parents vs self advocates. There are evil Autism Warrior parents out there for sure but most are trying to do the right thing.

Let's say you are an autism parent who are you going to listen to experts with hundreds of peer reviewed papers or a self advocate calling you a Nazi? Most parents will immediately tune out forever any outsider critiquing their parental choices. It does not matter how right or logical you are, you are fighting primal instinct and you are going to lose.

For us opponents of ABA it seems really simple, parents agreeing to ABA are agreeing to harm their child and are perpetuating the idea that our autistic behaviors make us broken. But sad to say because of the ABA monopoly in some situations ABA is the lesser evil.”

Original 2019 thread

Fortunately since 2019 the calling of Autism parents Nazi’s, monsters and so on has declined a lot.


The pro ABA spokesperson mentioned the self diagnosed. It is true that most Autistic spaces do allow the self diagnosed to participate. That is not the point the spokesperson is trying to make, the strategy is to imply that those criticizing ABA are a not autistic and thus should be ignored. It is also an attempt to divide and conquer. This might have worked around 2014 when self diagnosis was a bitterly divisive issue on WP but that fortunately is far from the case today.


_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman