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ABA and the Thorny Problem of Control and Consent

Editor’s Note: This post was originally written for a Canadian audience but the information is still relevant for the United States and other parts of the world. This post discusses applied behaviour analysis (ABA) as an autism “therapy” and includes references to both animal and child abuse. It may therefore be upsetting and/or triggering for some. A version of this article was first published at smallbutkindamighty.com.

Further reading

It may be odd to start a blog post with some suggestions for other posts you should read, but here we are. These posts make some points similar to the ones I have outlined below but much more eloquently. As is true for many of the things I write, the main reason I put together and finished this piece is because it was the most effective way for me to marshal my thoughts in relation to this issue.

ABA by Unstrange Mind – if you read only one thing on ABA and autism, this is the post to read. It’s a wonderful, eloquent piece with great examples and written by an autistic person.

Why I Left ABA by Socially Anxious Advocate – I found this perspective from a former ABA therapist fascinating and the post includes links to other excellent resources which address ABA and autism.

Would You Accept This Behaviour Towards a Non-Autistic Child? by Heidi LoStracco, one of the speech therapists behind the terrific AAC app, Speak for Yourself. This post is especially good when it gives examples of how ABA “programming” often does not support the goal of helping disabled children to learn to communicate.

Thoughts about terminology

When you parent or work with a disabled child, you instantly find yourself immersed in jargon and acronyms in relation to absolutely every darn thing (which sucks, by the way). When discussing “behavioural therapy” for autism, the two acronyms that most frequently come up are ABA and IBI.

In Ontario, the only provincially-funded autism “therapy” is IBI (intensive behavioural intervention). It consists of a minimum of 25 hours per week and is designed to prepare pre-school-aged autistic children to start school. IBI programs in Ontario typically resemble the Lovaas model quite closely. You can read this outline from the Geneva Centre for Autism about ABA and IBI and how they differ. Both my children attended an IBI program for two years. The therapists were uniformly lovely people who adored my kids.

ABA is both a broad term and a broad discipline. ABA principles can be found in fields as diverse as education, corporate consulting and animal training, as well as in many therapeutic settings such as those dealing with substance abuse.

So, is it ABA or IBI that I find problematic? Well, it’s both:

  • The foundation of ABA, and radical behaviourism specifically, I find both reductive and deterministic. Behaviourism denies that human agency and genetics have a role in explaining who we are and what we become. And a fundamental problem with ABA is that it is designed to manipulate and control the behaviour of others.
  • With respect to IBI programs, my general concerns with the control/compliance core of ABA come into a sharp, autism-related focus. Before we get into further detail on this, however, I’d like to share some thoughts aimed specifically at therapists and parents.

Some initial thoughts for BCBAs, other therapists and teachers

Please don’t be defensive or dismissive. I have often seen BCBAs (Board Certified Behavioral Analysts) respond to concerns about ABA and autism in the following ways:

  • “Oh, this is just the neurodiversity crowd, overreacting again!”
  • “Look, we’re not all like that!”
  • “You’re focusing on an outdated, outmoded form of ABA, we don’t do things like that anymore”
  • “I would never use aversives or abuse with children!”
  • “You don’t understand what ABA is. That’s not real
  • “I would never stop kids from stimming!”

The above examples illustrate someone who is deliberately focusing on the trees to avoid seeing the rather enormous wood in front of them. Criticism of ABA isn’t simply about the concrete examples of abuse that *DO* still occur – like preventing autistic children from stimming (see Julia Bascom’s Quiet Hands for an example) or the use of electro-shock as an aversive or forcing eye contact – although these examples are certainly very useful in identifying problematic therapists. There is a central question that all BCBAs must grapple with, and the author of Real Social Skills asks it very clearly: Can ABA be ethical as an autism intervention?  How do you reconcile the level of power and control therapists wield in terms of modifying behaviour and enforcing compliance with the rights of a disabled individual to personal autonomy?

  • Please be kind to critics of ABA.Many autistic people who went through ABA programs as children experienced lasting and profound psychological damage. Some of them suffer from PTSD as a result. A lot of autistic adults are angry and understandably frustrated that not only are their personal experiences dismissed, but when they seek to ensure that the autistic children who come after them do not suffer the same or similar abuses as they did, they are routinely insulted or ignored.
  • Don’t take criticism of ABA personally.It isn’t about you – if you’re reading this post for example, I bet you care deeply for the children you work with. Take some time to reflect on all your therapeutic practices – are they respectful and consensual? What can you do in relation to the power imbalance inherent in ABA practice? Are you teaching useful skills or simply instilling compliance?

Thoughts for parents

  • All of the considerations I’ve outlined for therapists above also apply to parents. Don’t react defensively. Don’t take criticism of ABA personally. And especially, be kind to the autistic people who have taken the time and effort to outline their concerns in relation to ABA. Autistic adults want the best for your autistic children and yet I’ve seen some parents be incredibly cruel to autistics, a reaction I will honestly never understand. These are the people your children will be as they grow older – why are you lashing out at them?
  • Focus on helping your autistic child develop their communication skills rather than modifying behaviour. I wrote an entire post on this a while back.
  • You’re not a bad or abusive person – I’m sure you want the best for your child just as I want the best for my children – but you need to keep an eye on the bigger picture to ensure your child is in fact getting the best.
  • Don’t panic about early intervention. Your child is experiencing developmental delays, not developmental stasis. One of the greatest gifts you can give your child is the time and space in which to develop. Expecting a 4-year-old to work full-time hours in IBI might not be your best option.
  • When discussing concerns in relation to ABA, a common reaction from parents is, “But it works!”  Please bear in mind a couple of things before rushing to say this:
    • What do you mean, exactly, when you state that ABA has “worked?” If you mean that ABA has turned your autistic child into a compliant child who behaves like a typically-developing peer, then you may in fact have a time bomb on your hands. Lots of autistic people have learned to “pass” as neurotypical – it almost always leads to a breakdown or burnout of some kind later in their lives.
    • The ends should never be used to justify the means. Even if ABA has taught your child a useful life skill, if it was done in a way that was abusive (and yes, I consider a violation of a child’s autonomy to be abusive) then you have simply created more problems for your child (and therefore yourself) later on.

The problem of history

Undoubtedly, someone is going to argue that this isn’t relevant because “ABA isn’t like this now.” Well, I have two history degrees, so arguing that the past is irrelevant isn’t going to cut it with me. I believe it’s important that people know the ethics, ideas and practices of those who developed behaviour modification because it explains the key reasons as to why ABA is still problematic now. Having said that, this is a potted history which, by necessity, means it will be brief and incomplete and certainly nowhere near comprehensive.

Pavlov

Most people are aware of Ivan Pavlov’s experiments on dogs, for which he ended up winning the Nobel Prize. Pavlov observed that dogs would begin salivating in anticipation of food, and his subsequent experiments demonstrated the concept of conditioned or conditional reflex by showing that over time, if a bell was rung when food was presented, the dog would begin to salivate upon hearing the bell. This model, called classical conditioning, provided a basic explanation for how organisms learn; in the 20th century, this explanation became the foundation for behaviourism.

What many people aren’t aware of are the ethical concerns surrounding Pavlov’s experiments. Withholding food (actually meat powder) from the dogs was a vital part of the experiments, but Pavlov also operated on them, externalizing their salivary glands and parts of their digestive system. In later experiments he even sought to induce neuroses in his animals. As behaviourism developed, the dodgy ethics would continue.

Diagram showing how dogs were modified to externalize their salivary and digestive systems.

B.F. Skinner

Behaviourism arose as a branch of psychology that concerned itself with observable behaviour. In their laser-like focus on outward behaviours (rather than thoughts, feelings or other variables) that can be observed, recorded and measured, the behavioural therapists of today demonstrate how behaviourism is still at the heart of everything they do.

There were many scientists involved in developing behaviourist ideas and principles, but the reason I’m focusing on B.F. Skinner in particular is because of his work in relation to “operant conditioning.” Pavlov had demonstrated how many of the behaviours we acquire are reflexive. In contrast, Skinner was more interested in determining how to create or teach new behaviour. Skinner’s work is why ABA therapists focus on:

  • Antecedents are what happened before a particular “behavior”
  • Consequences are what happened after the behavior occurred. If you’ve ever collected data in connection with ABA therapy, you’ll be familiar with these terms (the acronym ABC is derived from Antecedent, Behavior, Consequence).
  • Positive and negative reinforcement
  • Escape and avoidance
  • Generalization

What many people aren’t aware of now are the ethical and moral concerns surrounding Skinner’s work and ideas. For example:

  • Skinner believed that human free will, human dignity, even human thought, were illusory.
  • One of his primary goals was to devise methods for the control of human populations. Sure, he sought to do this for noble reasons – like many living through the Cold War Atomic era, he was preoccupied with the idea of humanity destroying itself – but given his focus on benign totalitarian control as a solution, it’s hardly surprising that campus students once hanged Skinner in effigy.
  • You don’t have to be an attachment parenting advocate to see problems in the idea of putting babies in boxes in order to give parents a break.

Ivar Lovaas

In over-simplified terms, Lovaas, like all behaviourists, was firmly on the “nurture” side in the “nature vs. nurture” debate. While John Watson felt he could raise any child to be a doctor, lawyer, artist or thief, Lovaas claimed he could have raised Hitler to be a nice person. Behaviourism has this tendency to deny, or at least underrate, not only human free agency but also genetics.

Any discussion of ABA and autism must include Lovaas, because he was the first person to develop ABA principles specifically as a “therapy” for autistic children – the same therapy that became IBI. A 1965 feature in Life magazine (huge **trigger warning** before clicking on that link) provides us with an outline of what this “therapy” looked like at the time. The obviously abusive components involved electric shock, slapping and shouting but there is also a quote in that piece that goes to the heart of the problem with respect to the Lovaas model:

“Lovaas is convinced, on the basis of his experience and that of other researchers, that by forcing a change in a child’s outward behavior he can effect an inward psychological change.”

What ABA for autism looked like in the 1960s.

 

Lovaas’ goal was to create autistic children who were outwardly “indistiguishable from their peers” in order to inwardly “cure” their atypical neurology. Far from a that-was-then situation, Lovaas was active in the field into the 1990s (he died very recently in 2010).  Neurodivergent K does a great job of outlining the negative, real-world impacts of “indistinguishability” on autistic people – how it results in denial of disability (and therefore a withdrawal of much-needed supports and accommodations) and how autistics eventually burn out from the exhaustion of “passing” as neurotypical. It’s not coincidental that Lovaas’ research has also been used to underpin the abusive concept of “reparative therapy” for homosexual and trans individuals. That fact alone should give us pause before deciding to use the same principles to “cure” autistic children.

If all you’re focusing on with Lovaas is the obvious physical abuse autistic children underwent as part of his original ‘program,’ then you’re missing the point: IBI is based on a fundamentally unreasonable and damaging assumption – that children with a fundamentally atypical neurology can be taught to act normally” and by so doing, they will somehowbecome normal.”

The problem with animal behaviourism

The first time I encountered ABA was actually when I took my puppy to training classes a long, long, time ago. One of the first things we were taught was how to use a bridge. In our case, we used classical conditioning concepts to teach our pups that when we said the word “yes,” a food treat was coming. It enabled us to provide immediate reinforcement that the pup had done something right, even if she was at a distance from us.

If you’ve watched the documentary Blackfish, then you’ve seen SeaWorld trainers use a bridge – in their case, they use a whistle to let a killer whale know that they’ve correctly performed a requested behaviour. In the film, former trainers speculate that Tilikum may not have heard Dawn Brancheau’s whistle during the last routine they performed together before he killed her.

In the companion book (which I highly recommend), Death at SeaWorld, I recognized more ABA techniques at work. For example, orcas in captivity routinely have their teeth drilled (click on this link for more information in relation to this barbaric practice). Trainers described how they would condition the whales to accept having their teeth drilled in a way that was exactly the same as the procedure an ABA therapist advised for cutting my son’s toenails:

  • Show them the drill (or nail scissors) and reward calm responses with food
  • Turn on the drill (make the nail clipper sounds) and reward calm responses with food
  • Place the drill (scissors) nearer and nearer and reward calm responses with food
  • The basic approach is to gradually increase exposure to something frightening and to positively reinforce the ‘correct’ response.

In the SeaWorld example, ABA is being used unethically to force compliance with something that is made necessary solely by captivity. In my example, sometimes my sons have to do things they don’t like (cut their toenails, brush and cut their hair, clean their teeth). A rigid ABA approach would teach them that they had to suppress their sensory issues in favour of compliance. A more ethical approach, I believe, is one in which I might use ABA techniques like positive reinforcement (other than food), but I also strive to reinforce my kids’ autonomy. If a necessary task is hard for them that day, we make it quick or break it into chunks. If they are having an easier time, we talk about what exactly is hard for them (talk when they feel good, not when they’re in crisis mode!) so I can both understand them better and help them more effectively. If they are having a good experience, it’s the best time to explain to them why these things are important. I also give the boys as much choice as I can (they choose their toothbrushes, hair brushes, whether we use clippers or scissors, toothpaste, etc.).

Simon Baron-Cohen, a psychologist whose work typically runs counter to the experiences of autistic adults, recognized that behaviourism has an ethics problem and used captive orcas to illustrate his point. I also find orcas in captivity to be a useful way to help people understand how injurious ABA can be to autistics, even if it “works” and isn’t considered “abusive.”

  • With respect to both orcas and autistics, we equate the capacity to speak with a capacity for intelligence.
  • We expect orcas and autistics to function in an artificial, harmful environment. SeaWorld places Orcas in a concrete bathtub in which they not only have insufficient room in an unnatural, acoustically dead environment, they are also subject to higher forces of gravity and UV radiation exposure than they would be in the wild. We know that autistic people typically have challenges with respect to auditory, sensory and motor processing and yet IBI environments replicate the sensory environment that kids encounter in schools (the whole point of IBI is to train autistic kids to be “school and table ready”). Autistic children are forced to train their bodies and senses to adapt to a hostile environment rather than taught self-regulatory techniques and how to advocate for supports and accommodations.
  • Both orcas and autistic children are placed in unnatural social situations.Orcas are social animals who live their entire lives in the wild with their mothers and other family members; in captivity, not only are mothers and calves separated, but orcas are either left alone or placed within groups that are both artificial and stressful for them. In IBI, our kids are so often made to do things they aren’t comfortable with – stimming is suppressed in favour of “table ready hands,” they are separated from the people and things they enjoy, “comfort” with groups of people is enforced and they are trained in “social skills.”
  • Both orcas and autistic kids are asked to perform unnatural behaviours, over and over again.In the same way that orcas in captivity are asked to perform behaviours they don’t do in the wild, autistic children in IBI are expected to continually perform behaviours that are either unnatural for them (like forced eye contact) or pointless, other than to test and ensure ongoing compliance (“touch your nose”).
  • Placing orcas in captivity leads to psychological damage, self-injurious behaviour and aggression, both between orcas and towards trainers (according to this report). Autistic adults have written about how traumatizing ABA intervention was for them (in the short, medium and long term). We simply have to acknowledge that, to the extent our autistic children express “problem” behaviours, this may, in certain cases, be the result of the stress and/or trauma they are currently experiencing or have experienced in the past as part of ABA programming. Responding to their challenges by again focusing on ABA-solutions and behaviour modifications is only likely to make the problem worse.

Image is from an excellent Amy Sequenzia post about talking to Autism Advocacy organizations. Click on the picture to read.

The problem with a focus on control and compliance

I am not in any way asserting that ABA is useless or uniformly harmful – in fact, when my children were on the waitlist for IBI, I learned a number of techniques and strategies from ABA therapists that were extremely useful in helping me understand my children and teach them life skills. In fact, if I could make my decisions over again, I wouldn’t put my children into IBI, but I would still choose to learn about ABA strategies and techniques, such as:

  • data collection
  • pairing
  • planned ignoring
  • chaining and reverse chaining

In talking about the problem of compliance, I’m not advocating that we let our kids go full-on Lord of the Flies – in the case of my children, we still have rules, there are still things that the boys have to do even if they would rather not (like cleaning their teeth), and there are often things they want that they don’t have unlimited permission to access. The issue I have is that compliance for compliance’s sake is drilled into autistic children – and it’s not just sufficient for children to comply, they have to do it unquestioningly.

An example can be found in this YouTube video.  As the mother explicitly says, the point of this isn’t to teach a skill or anything useful: “You’re not teaching them new information, you’re teaching them to be compliant.”

This video is a great example of a parent who, I believe, loves her child very much. Her intentions are certainly good ones (she talks about keeping kids safe in the community and giving them the ability to pay attention in school), she’s not using any aversives, and she doesn’t even raise her voice. But she’s infantilizing her son (remember, he’s a 29 year old man), and by teaching him to be unquestioningly compliant to authority figures she has turned him into an easy target for abuse by others.

This is Skinner’s ideal of control made manifest – and it scares the heck out of me.

Image is from a Tumblr post that also provides some (terrifying) data on the prevalence of abuse of disabled people. Click on image to see post.

The problem of consent

I want to address consent in more detail in a future post—but for now I’d like to explore the issue in relation to ABA and autism therapy. When you have a program that, at its core, exists to create control and enforce compliance, then you are teaching autistic children something that will ultimately make them fundamentally unsafe.

A friend recently pointed me to this article, which does a great job of outlining a number of practical things that parents can do to help their children understand the meaning of consent. Coincidentally, it’s also a laundry list of things we routinely deny to developmentally disabled children. Not all of this can be blamed on ABA of course; ableism is widespread and deeply rooted in our society. But in its focus on control and compliance, I believe that ABA programming runs completely contrary to best practices for teaching children about consent.

  • Asking permission. I know of a nearly-10-year-old autistic boy who kisses peers, adults, and even strangers at random. In line with the way we tend to infantilize the disabled, the boy’s teachers and therapists think this is adorably cute behaviour – no consideration has been given to teaching him that he needs consent from the other person before he touches, hugs and kisses
  • Disabled children and adults are denied personal autonomy. Flopping to the ground is seen as “non-compliance” in ABA programs, and children are often physically moved to where they are “supposed to be.” Hand-over-hand is routinely used to enforce compliance with instructions.
  • Disabled children’s right to privacy is not respected.It can take developmentally disabled children a lot longer to learn toileting and grooming habits, and continence and self-care are often areas in which they will continue to need support as adults. But we don’t recognize that disabled children have the same right to privacy as their typical peers. For example, how many parents, teachers or ABA therapists do you know who ask autistic children for permission before helping them with the toilet or changing their underwear? Autistic children are learning that adults have an unquestioned right of access to their genitals. This is unconscionable given that these kids are already more vulnerable to abuse than their typically developing peers.
  • The myth that autistic people lack empathy and ‘theory of mind’ is pervasive and damaging.It feeds into the idea that autistic people aren’t people – which, of course, makes them an awful lot easier to abuse.
  • We abuse the concept of ‘no’ and ‘stop.’Not only does ABA programming fail to honour the right of disabled children to say ‘no’ or ‘stop,’ we often don’t even provide autistic children with the means to say ‘’  You can read here how ‘no’ and other phrases were the first things I programmed into my non-speaking son’s AAC app. In addition, disabled children usually hear ‘no’ and ‘stop’ an awful lot more than their typically developing peers. Our misuse of these words teaches disabled children that these words can be ignored.
  • ABA programs often force physical contact. Forcing eye contact and using hand-over-hand are examples of how we pressure disabled children to do things with their bodies that make them uncomfortable.
  • Autistic people can’t read social cues the same way that allistic (non-autistic) people can. Instead of forcing autistic children to learn the meaning of facial expressions and non-verbal cues by rote, why aren’t we providing them with alternate strategies that would also help both them and their communication partners? Checking in is good example; rather than assume I know what he’s telling me, I check in with my non-speaking son about the facial expressions and gestures he uses by asking him questions. There’s no reason why I can’t teach my other autistic son, who is verbal, to do the same and check in with his brother and others with questions like, “I think you’re happy, are you happy?”
  • ABA programming is rigid, regimented and controlled by therapists. It’s true that autistic people typically love routine, but we need to teach our kids how to make choices, and to do that we need to give them those choices with a certain measure of control.
  • We put limits on disabled adults (especially developmentally disabled adults). We don’t see them as sentient, sexual people, so it’s hardly surprising that disabled children are routinely left out of health and sexuality classes.

Why government funding for ABA therapy is problematic

We need funding for programs that benefit all children with developmental disabilities.  We need programs that provide them with support and teach them skills based on their needs rather than some arbitrary functioning label.

Children with communication disabilities like autism also desperately need ongoing access to those with specialized assistive tech knowledge and experience in teaching and using AAC. Using my non-speaking son as an example:

  • When he was in IBI, his therapists would only use PECs (Picture Exchange Communication system)—he wasn’t exposed to any other AAC options.
  • His therapists would move his PEC cards around to ensure that he had “really learned” his vocabulary, ignoring the importance of motor planning for success with AAC
  • They continued to focus on trying to teach him to speak, rather than teaching him how to communicate.
  • My son is now nine years old. He hasn’t seen his school SLP in a year and has never had an assistive tech evaluation. He completely relies on me for AAC support.

We need to do better than this. We need to stop focusing on behaviour, control and compliance and start focusing on communication, autonomy and consent. We need to start seeing our disabled children as the human beings they are and start giving them the respect they deserve.

Photo Credit: Matt Beckwith/Flickr

Deanne Shoyer is a full-time mother to her 9 year old autistic twin boys who also writes about autism, neurodiversity, history, books, apps and crochet whenever she can find the time. You can find her at her website, smallbutkindamighty.com

 

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