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.
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.
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…
- 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.