behaviourism – NeuroInsurgent

The “Severe Autism” Concept is Behaviourism’s Final Stand

This article was originally published at The Aspergian.

In terms of psychology, taking a purely “behaviourist” perspective towards human beings has actually fallen way out of fashion.

For example, according to this article on MentalHelp.net, a behaviourist’s perspective towards depression is that depression is learned; the person’s environment is not providing enough pleasurable experiences (positive reinforcement). The final paragraph states:

Traditionally, behaviorists did not pay much attention to people’s thoughts, perceptions, evaluations or expectations and instead focused solely on their external and directly observable and measurable behavior. They did this not because they weren’t aware of these internal feelings and thoughts, but because they thought them relatively irrelevant to the process of influencing behavior, and too difficult to measure with any accuracy. It turns out that this position was too extreme. More recently, research has shown that internal events such as perceptions, expectations, values, attitudes, personal evaluations of self and others, fears, desires, etc. do affect behavior, and are important to take into account when doing therapy.

It also follows with, “As a result, old-fashioned ‘strict’ behavioral approaches to treating depression are not as popular today as they used to be.”

The reason why behaviourism has been able to stick around so long in the form of behavioural analysis of autistic people is because autism has always been conveyed as a sort of “mystery” disorder.

People are still arguing about what causes autism, how to treat it, and even how to define it. Meanwhile, those of us who are actually living with it are regularly downplayed or outright silenced.

Since the early ’90s, however, we have been on the precipice of a complete paradigm shift when it comes to our understanding of autism and autistic people.

In 1993, Jim Sinclair, who didn’t speak until the age of 12, proclaimed, “Grieve if you must, for your own lost dreams. But don’t mourn for us. We are alive. We are real.”

Around this same time, researchers were questioning their own perception of autism due to the “controversy” surrounding facilitated communication. Did decades of research into autism get it wrong?

Behaviourists took it upon themselves to conduct rigorous authorship testing of those communicating via supported typing or spelling seemingly without acknowledging that the theory behind the method behind why it was necessary differed from their own conception of what autism is.

Pure behaviourists only use quantitative measures of behaviour as acceptable data. So they concluded, from the few messages that confirmed facilitator influence, and from the scarcity of correct answers in controlled settings, that all of the messages must be influenced.

In order to come to this conclusion, it also requires the researchers to downplay or criticize the methodology of every study performed or any video showing counter-evidence.

This includes, for example, an eye-tracking study showing that the person communicating looked at the letters before their hand moved to it, and a study showing that, of about 720 interactions, about 10% of them involved disclosure of information unknown to the facilitator.

They also must ignore massive amounts of firsthand experience from family and friends of those using the method. Authorship of words can easily be validated by message-passing in real life: spellers and typers have disclosed feeling pain that was later confirmed by medical examination, for example.

And, at this point in time, they also must ignore the growing research base that supports the theory upon which facilitated communication and newer spelling methods like RPM are based on: there is a high rate of apraxia among non-speaking autistics, and including a measurement of motor differences increases accuracy of diagnosing autism.

Put another way… if we look beyond a behaviourist perspective of autism, we are seeing that some non-speakers appear to have a developmental motor disorder rather than an intellectual disability or a lack of understanding. Their verbal communication is just “locked in.”

If you actually pay attention to what non-speakers have written, there is a persistent reference to a “mind-body disconnect,” or an inability to plan motor functioning. This may describe childhood apraxia of speech (where the brain has difficulty coordinating the muscle movements for speech) or perhaps something like ideational apraxia (the inability to select and carry out an appropriate “motor program.”)

If the notion of “severe” autism is really a result of apraxia, we have some very solid evidence that behavioural therapies are completely and utterly useless for autistic children. If someone is unable to reliably control their motor functioning, we must rely on what they communicate to us in a different way.

Observing the behaviour alone is not related to their conscious thoughts because the conscious mind isn’t fully in control of the body.

But “severe autism” is where behaviourism has its last stand: “Sure, maybe you ‘high-functioning’ autistics don’t need behavioural therapy, but what about people with ‘severe‘ autism? You can’t speak for them.”

No, they can speak for themselves, actually.

But there’s a concerted effort to keep that fact on the down-low.

The biggest threat to the behavioural therapy industry is autistic people ourselves, because we tend to understand autistic behaviour better than the vast majority of neurotypical professionals, and if our knowledge were widespread, we could easily put them out of business.

Together, autistic people make up a spectrum of life experiences, some challenging and some enjoyable, and our collective experiences should inform the direction of “treatment” for people who are like us. We know what ultimately works and what doesn’t, and we deserve to be given a fair chance.

The people who push the “severe” autism narrative are correct in one thing; I will give them that. There are those of us in the community who require more support than others, and their voices aren’t being heard.

The only way to topple this tragedy narrative is for us is to unite with autistics who don’t speak or can’t speak reliably, who also have epilepsy or cerebral palsy, and who have learning or intellectual disabilities.

Where that narrative goes wrong, though, is in the idea that these people have no voice at all. In fact, non-speakers who have learned successful methods of communication have long held well-deserved places in disability activism.

I believe that those of us with platforms are obliged to share the words of non-speakers and seek their input whenever possible. We can’t do what the “anti-neurodiversity” crowd does; we can’t argue over whose voice is more acceptable.

There are no more excuses for relying on a purely behaviourist perspective of autistic people. We can tell you ourselves.

Double Standards: ABA vs. Facilitated Communication

This article was originally published at The Aspergian.

There were a couple of things that spurred my dive into research regarding facilitated communication (FC) and other methods of alternative and augmentative communication (AAC). One that I have mentioned before is that I watched a few documentaries featuring autistic people who spell or type to communicate.

Another was that I very quickly learned about applied behaviour analysis (ABA) when I became involved with the autistic community, particularly about its potential for damage to young neurodivergent minds. I immediately thought back to those documentaries I’d seen and I thought to myself, “I bet a lot of these kids with ‘challenging behaviour’ are just frustrated that they can’t communicate with anyone. Why aren’t we pushing communication first?” That’s when I discovered that FC wasn’t considered “evidence-based” and started doing my research.

Critics continue to claim that I believe that FC can be efficacious because I allegedly have no understanding of the science and allegedly refuse to question it. They are wrong. I certainly had a moment of crisis where I considered whether I had been duped into believing something that couldn’t be true. It was through reading both sides that I came to my conclusion. Meanwhile, critics of FC (and of other AAC methods) have simply come up with more complicated “reasoning” as to why it can’t possibly work ever. (See: shifting the goalposts.)

However, there was something peculiar that I noticed throughout my researching. Whenever I argued for the efficacy of certain AAC methods, I would often get criticisms of the evidence that supports it… using arguments that, if applied to ABA, would not hold up at all. This was especially peculiar considering the people who criticize FC usually promote ABA.

Far be it for me to accuse anyone of being an ABA shill, but I do see a pattern of refusing to recognize the potential for efficacy in specific methods of learning while completely ignoring evidence of inefficacy in the one that you do. Let’s go through those together using facilitated communication as an example.

They say FC can only be validated via double-blinded experiments in controlled settings…

The universal way of validating someone’s identity is to ask them questions that someone who isn’t them would not know. We do this all the time when we deal with sensitive information. People who communicate with AAC also pass information that their support people never knew. Ask anyone who personally knows someone who uses AAC, and they can verify this for you.

Critics take the position that the only way to ensure authorship of the words produced through FC is for the method to be validated in double-blinded experiments in controlled settings. It doesn’t matter if you’ve passed information outside of the controlled settings (which has occurred in many qualitative scientific studies); it has to be this method, nothing else.

(Skeptics constantly shift the goalposts for what constitutes proper evidence, though, and I’m sure once there is at least one study available, we’ll be hearing critics saying that one study doesn’t trump the other ones…)

…while ignoring the fact that evidence using the scientific “gold standard” for validating ABA outcomes (randomized controlled trials, or RCTs) is scant.

Meanwhile, when considering the evidence of ABA principles being used to train skills, the “gold standard” of evidence would be via long-term randomized controlled trials. Essentially, autistic children would have to be randomly divided into two groups, one receiving an ABA type of therapy and one receiving a different type (or no therapy at all). The people observing would also have to be unaware of which therapy (or lack thereof) the subjects were receiving, in order to prevent bias in the results.

You might think that, for a field that insists it is evidence-based whenever it receives criticism, there would be a lot of rigorous studies of this kind to back up those claims. However, ABA studies using randomized controlled trials are actually few and far between.

Lovaas’s 1987 study is considered the first of this kind (though the subjects weren’t actually randomly assigned to groups due to parental objections and ethical considerations). Regardless, 47% of the group receiving intensive behavioural therapy “achieved normal intellectual and educational functioning.” This number is often used as the definitive proof that ABA works. I’ll come back to this study later.

There have only been a few studies done since then that qualify. One of the reasons is cost. RCT-type studies are very expensive (in the millions). Another is that ABA is already assumed to be the standard of care for treating autism spectrum disorder and withholding ABA from autistic children is “unethical.” You see the conundrum we’ve found ourselves in here.

A 2009 meta-analysis of applied behavior intervention found inadequate evidence for outcomes. A 2018 Cochrane review found evidence in favour of early intensive behavioural intervention to be “weak.” Behavioural analysts refuted these findings, of course, claiming that the very strict standards left out the vast majority of research supporting positive outcomes for ABA through other experimental methods.

When I make that same argument for FC — that the preponderance of peer-reviewed articles supports valid authorship and that the systematic reviews claiming it as invalid ignore them entirely — I’m called anti-science.

Weird.

They say FC should not be promoted because the potential for abuse is too high…

Whenever FC is brought up, I get bombarded by examples of legal cases in which FC users made abuse allegations or in which their communication method was used to justify murder, in one case.

In the latter case, the woman was convicted of manslaughter for killing her son. I, of course, agree with this ruling. However, the mother in this case also had psychiatric issues and no formal training in FC. In fact, in several of the cases where allegations were made, the facilitator had no formal training.

These are awful situations. I have sympathy for every person who is accused of something they didn’t do. However, false allegations are not unique to FC. Authorship tests were not completed in every one of these cases, but even if authorship had been validated, every person is still capable of lying.

Furthermore, there have been abuse allegations made through FC which were later verified. Downplaying these allegations instead of investigating them would have left the children here much more vulnerable than removing their communication method altogether would have.

As well, the complete denial of any efficacy of FC also results in abuse. Sharisa Kochmeister, a tireless autistic self-advocate and former president of the Autism National Committee, was removed from her family’s care against her will and placed into a group home, despite using her method of communicating (typing with one finger) to ask for a lawyer.

But of course, critics aren’t interested in cases like hers. As I have said before, when people talk about protecting nonspeakers from “abuse,” they are more concerned with what nonspeakers might say about others than they are with the right to communicate.

…while ignoring the fact that ABA-type methods have been linked to both physical and psychological abuse.

Flipping back to ABA and the double standards applied, there is plenty of evidence of abuse in ABA-type methods. Physical abuse occurs through the use of aversives, and psychological abuse occurs through long-term use of ABA-style intensive “therapy,” which is what most autistic children are “prescribed” as the standard of care.

Among advocates, the most well-known use of aversives as physical abuse is at the Judge Rotenberg Center. Purportedly, the JRC is one of the only institutions to still use aversives as part of behavioural therapy, and one of the only ones still using electric shocks as a form of behaviour modification. By human rights standards, it qualifies as torture.

Despite the assertion from behavioural therapists that aversives are no longer in use with modern ABA, the JRC has continued to have a presence at the Association for Behavior Analysis International’s annual convention. This year’s materials included several discussions on the alleged merits of skin shock as punishment.

As for psychological abuse in ABA, I personally wrote an article about it, so I won’t rehash it here. This article in Cogent Psychology was my main source of inspiration.

Interestingly, nonspeakers who later learned to type or spell to communicate have voiced their thoughts on ABA and how it was pretty much useless for them. I can’t help but wonder if the pattern of nonspeakers against ABA is one of the reasons ABA proponents are unwilling to accept alternative communication methods as valid.

They downplay testimonials from the thousands of parents who recognize their child’s authentic communication…

United for Communication Choice has estimated via informal polling that there are about 5,000 children in the United States who communicate by typing or pointing to letterboards. That’s thousands of parents seeing their nonspeaking (or partially speaking) children improving literacy skills and motor functioning, and plenty of anecdotal evidence for validated authorship.

According to these critics, these parents are victims of emotional manipulation and false advertising on the part of those promoting FC, RPM, or another method. It’s that whole condescending “Of course, parents want to believe their kids are talking to them, but I, a person who has never met those kids, know better.”

…while claiming that testimonials from the thousands of parents who are convinced that ABA helped their kids develop are valid evidence of its efficacy.

It doesn’t matter how many times autistic adults write about how ABA has been damaging to their psyche. Proponents are still going to point at the parents who support it for their children as proof that it works (again, without any studies comparing development with ABA treatment to development with no treatment, or recognition that some studies have found that the number of hours has no relation to diagnostic outcome.)

Have I mentioned that there isn’t any evidence regarding the psychological well-being of autistic children exposed to long-term ABA? Most, if not all, of the evidence is based on parental reporting and observations of behaviour. They report on whether behaviours changed or not. They don’t report on whether or not the child’s psychological well-being has improved. I wonder why that is.

Remember when I said I would come back to Lovaas? The 47% number was achieved with the use of aversives as punishment, and Lovaas credited aversives with the achievement. Any use of that number as proof for the efficacy of “modern” ABA (which I am told does not use aversives) is actual false advertising.

I keep hearing from local people that ABA in my area can cost up to $80,000 a year. $80,000 a year for a “therapy” which could potentially be physically abusive and is almost certainly psychologically abusive (and particularly so for nonspeaking children). It would take me four years to make that much money! I can’t imagine the kind of debt some parents must have gone into because these so-called experts claimed that their children would never reach certain developmental milestones if they aren’t immediately put into intensive one-on-one behavioural therapy.

And where’s the evidence supporting that? Oh, right, it would be unethical to deprive autistic children of ABA to test for that evidence. How convenient.

Is there some kind of agenda at play? It’s hard to say for sure.

Ultimately, though, when you compare between these two methods of teaching (and this is, in fact, what they both are), I have a few things to note…

ABA methods…

measure intelligence by observations of behaviour
no presumption of competence is made
consider movements and ability to make speech as reflections of intelligence
have minimal understanding of autism (no specialization required to become an RBT, for example) or base it on the outdated classification as a behavioural disorder
often disregard research regarding motor functioning and sensory differences
foster dependence (creating an over-reliance on prompting and external rewards)
social relatedness is downplayed; one must perform socially acceptable behaviours to be accepted, often without understanding of those behaviours

Spelling and typing methods…

measure intelligence by helping them communicate their thoughts and desires in methods suited to their needs
presumption of competence is made
consider movements and ability to make speech in the context of someone who may not have reliable control over motor functioning
recognition of motor functioning and sensory differences experienced by autistics and confirmed by recent research
foster independence (fading of prompts is an essential part of RPM and other spelling methods; unsupported typing is the end goal for FC users, when possible)
social relatedness is encouraged; one can use their individual method of communication to socialize with and understand others

Between ABA-type “therapies” and FC training, both methods do poorly in terms of evidence when they’re held to “gold standard” testing, and both methods rely strongly on anecdotal and individualized evidence for efficacy. But only one of the two is widely denounced as “pseudoscience.”

Among autistic self-advocacy groups and individual activists, ABA is almost universally condemned, while communication methods are encouraged. Among those who recognize the value of neurodivergent brains, ABA is unethical and damages intrinsic motivation, but communication methods, while still not fully reliable sometimes, represent the chance for autonomy and acceptance of differences. Among nonspeakers, ABA is useless, and real communication is freedom.

One of the assertions made by ABA proponents is that those of us who are opposed to behaviourist principles in teaching autistic children are “high-functioning” and that ABA is most helpful for “low-functioning” autistics. Yet, when someone whose primary communication method is through typing or spelling says that ABA did nothing for them, they are silenced, ignored, or otherwise condescended to, by being told their words actually came from someone else.

Again… how convenient.

Editor’s Note: In creating this article, I referenced quite a bit of information compiled by autistic researcher Michelle Dawson, and I would be remiss if I didn’t give her credit for all of the excellent work she has done, particularly in ethical violations surrounding behavioural therapy.

On ABA Therapy, Self-Determination, & Healthy Psychological Development

This article was originally published at The Aspergian.

Before I came to my identity as an autistic person, I had a short-lived obsession with self-determination theory (SDT), a framework for characterizing the processes which foster or inhibit healthy motivation and psychological development. I’m still very curious about SDT, and I have drawn correlations between the findings of motivation research and behavioural therapy before.

So you can imagine how pleased I was to see the originators of SDT cited in a recent article which drew the same conclusion many autistic self-advocates realized years ago: long-term ABA is abuse.

It’s a very brief mention:

Detrimental effects are noted after the introduction of a reward such as reduced motivation, reduced intrinsic interest, and reduced performance quality in both typical and non-typical children. Additionally, the reward-expectation even lingers after changing the target task and the environment, indicating that the only thing that is being generalized is low motivation and the need for rewards (Deci, 1971; Deci, Koestner, & Ryan, 1999; Lepper et al., 1973; Wiechman & Gurland, 2009).

Self-determination theory came about as a result of research conducted by Edward L. Deci and, later, Richard Ryan. Through experiments, they proved that extrinsic motivators actually make people less likely to perform quality work and create reliance on extrinsic motivators.

They also concluded that people are intrinsically motivated by three psychological needs: autonomy, competence, and relatedness. They call these factors innate and universal, and they play an important role in our mental well-being.

Autonomy

Autonomy refers to the ability to make choices independently (with informed consent and without coercion). Children undergoing ABA-style “therapy” are not making the autonomous choice to do so, and this may be the main reason it causes post-traumatic stress in so many of its survivors. Repeatedly experiencing something you don’t want and having no way to stop it leads to learned helplessness.

I am often told that kids aren’t forced to do anything in their version of ABA. However, I must remind everyone that we are talking about children (with neurodevelopmental delays, no less!) They don’t have enough life experience to make informed decisions about therapy. They aren’t allowed to opt out. They usually don’t even get to choose their own goals.

Sure, kids might enjoy sessions for whatever treats they get as positive reinforcement, but they enjoy the treat, not the session. The most dangerous abuse is the abuse that happens when people are unaware they’re being abused.

If I may digress, I recall an instance in which someone defended their use of a choke chain for their dog by saying that their dog gets excited and happy when they see it, so it clearly couldn’t be hurting him. That’s a false equivalence. The dog was excited because he was going for a walk, not because he loves the choke chain.

All people are motivated by autonomy, but I suspect this is even more true for autistic people. We even share the same etymology with it: “auto” is Greek for “self.” We are often seen swimming against the tide while everyone else wonders why.

I’ve heard people claim that Greta Thunberg is being paid for her activism or that her parents forced her into it. Nah, she’s just convinced by what she has read on her own and wants to fight for the future. She’s exercising her autonomy as a citizen of the world. No extrinsic motivation necessary!

A young woman holding up a sign that says We Don't Have Time.

Competence

Competence refers to the ability to feel effective and recognized for what you do. When you are told to “presume competence” when dealing with autistic people, it’s because all people do best when our abilities are recognized. Since I can’t phrase it any better than this article at Very Well Mind puts it, allow me to quote directly:

Competence is increased when one is given opportunities to exercise their skills in challenges that are optimally matched to their abilities. If tasks are too hard or too easy, feelings of competence will decrease.

ABA often fails in this regard, and non-speakers who have later found a means of communication frequently point out how their competence has been undermined by it. A specific and powerful quote from Ido Kedar comes to my mind when I think about ABA and competence. He says the following in his blog post, Motor Difficulties in Severe Autism:

[My instructors] thought they were collecting data on my receptive understanding of language. They were not. I understood everything, as any other child my age would. The data they were collecting, though they did not know it, actually measured my poor ability at that time to get my hand to touch with accuracy the card I wanted, and did not reflect an accurate measure of how much I understood. My mind might be screaming, “Touch tree! Don’t touch house!” and I would watch, like a spectator, as my hand went to the card my hand, not my brain, wanted. And down in the data book it would be marked that I had not yet mastered the concept of tree.

Imagine going through that for 40 hours a week. According to Deci and Ryan, feeling competent is a psychological need. With that in mind, there can be no question that ABA is psychologically abusive to those with motor difficulties.

Consider any time you decided to learn something just for fun and you’re seeing competence as intrinsic motivation. Playing an instrument is a good example. Not everyone who learns an instrument is doing so to make money. It’s nice to have mastered something and then perform as a display of that mastery. I myself experienced a competence boost when my recent article was noticed and well-received by quite a few people that I admire.

A photo of a chess board with a person's hand holding the white — Photo by JESHOOTS.com on Pexels.com

Relatedness

Sometimes called “social relatedness,” relatedness refers to the ability to experience connections with other people and to feel a sense of belonging. Relatedness is so important for neurominorities. Our brains are very different from the majority of brains, and we are often targeted, bullied, and singled out for being “weird.”

One of the biggest myths about autistics is that we lack empathy. I mentioned the etymology of “autistic” earlier. Unfortunately, this idea is the real reason that “auto” is part of “autism.”

We were interpreted as being off in our own worlds, not interested in other human beings, and unable to understand them. Nothing could be further from the truth. While not all of us are social butterflies, many of us love being with other people… we’re just picky about who those people are.

ABA notably ignores the psychological need of social relatedness, though proponents might not think it does. After all, behavioural therapy often focuses on teaching skills that are meant to help the child integrate into society more easily.

The problem is that the social skills autistic children are taught don’t contribute to their sense of belonging (and ABA time often replaces time that should be spent learning with peers). Instead, the skills they are taught serve to highlight their differences and imply that they need to change to fit in. That’s the opposite of relatedness.

A solution for achieving social relatedness through education might be to teach autistic children how and why neurotypical children act the way they do… and then teach neurotypical children how and why autistic people act the way we do. There must be effort on both sides. Learning neurotypical communication is a worthy goal for autistics, but children need to be taught in a way that doesn’t diminish their own way of communicatin– not by replacing their behaviours with different, more “acceptable” ones.

The vast majority of my long-time friends are neurodivergent themselves. Noting and acknowledging that fact was quite validating for me when I was still pursuing a diagnosis. It seemed so obvious. We recognize each other, and we might not quite understand why, but there is an innate sense of acceptance there.

In James Cameron’s “Avatar,” the Na’vi people greet each other by saying, “I see you.” It’s not a physical seeing, but more of a spiritual understanding and acceptance. This is the essence of relatedness: feeling understood, feeling important, feeling loved.

In conclusion…

Thank you for reading my self-determination theory ~~infodump~~ article. Our (all humans’) psychological needs are just as important as our physical needs! If you’re feeling mentally unwell, think about how these three needs might play into your state of mind. A small tweak to something to allow for more autonomy, competence, or relatedness might just make a huge difference.