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.
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…
- 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.
This article is also published at the author’s blog, NeuroInsurgent.
- Sensory Processing is Only Half the Story: Movement Differences in Autistic People - March 14, 2021
- Game-Changing Research in the World of Communication Rights - May 19, 2020
- Our Movement Needs Mediators, Not Leaders - April 29, 2020
If both methods do poorly in testing situations then they should both be rejected.
RPM has not been tested. Again, this is flawed reasoning to conflate two ways to communicate.
Then it shouldn’t be used until it’s been properly tested.
How do you expect it to be tested if it can’t be used?
Many many researchers have offered to test it through double blind experiments in a controlled setting… Their offers have been refused…
How come the only communication methods requiring a facilitator are the only ones where testing is refused?
Because ultimately it is the facilitator being tested to see if they are influencing authorship. The facilitators don’t want to be exposed.
With respect, I disagree. Your comment reflects an ideology of “scientism” — which you may or may not have heard of, but essentially it means that you are arguing that if something hasn’t been tested via the scientific method, it can never be trusted. This is not true. There are many methods by which you can validate something that don’t involve controlled settings.
Like I said in this very article, “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.” You don’t need science to verify AAC for personal use; the people who know the person will be able to tell if it is useful or not.
Meanwhile, ABA-principled therapies are based on observational accounts of people outside of the “patient,” do not take into account subjective experiences of autism, and are widely discouraged as abusive by the people they are supposed to help. If you take that widespread denouncement and combine it with lack of rigorous evidence, correct, it should be rejected.
FC, on the other hand, should instead just be approached with caution. It doesn’t work for everyone; anyone involved with FC will freely acknowledge this and have been doing so for decades. But it does work for some people. Those people should *not* be denied the chance to communicate based on lack of scientific testing. How long do you think these people should stay silent — particularly when their method of communication has already been dragged through the mud by skeptics who don’t care to understand apraxia of speech or the process of how they learned to type?
Another example is that sensory integration or sensory diets are not considered “evidence-based” but there is plenty of anecdotal evidence for them being helpful. If it is very clearly helping someone and clearly not harming them, why should it be rejected?
It’s a balancing act, not a black-and-white issue.
I know what scientism means but I fail to see how it’s relevant here. This is something that falls within the sphere of science. I want medicines and therapies to pass scientific scrutiny.
Methods of teaching aren’t medicines or therapies.
Oh now it’s a method of teaching? Because the way defenders talk about it, you’d think it was a therapy. Feels like you’re shifting the goalposts here.
What do you mean “now”? FC has been called “facilitated communication training” for decades in Australia.
If it has not been verified that the non-speaking person is authoring their message then all we know is the facilitators think FC/RPM is a fine method of communication. Do no attribute words to non-speaking people with no proof of authorship.
Horrible decisions have been made through FC without proof of authorship…. such as where a person lives/ who they live with, where/ if they go to school, their hobbies, etc. None of that should be decided without proof of authorship.
Dozens of SA accusations where made through FC… Non-speakers had invasive sexual health exams where their genital were examined by strangers in order to determine if they were being abused. Then, through further testing , authorities found out the non-speakers could not have made these accusations.
How on Earth can you be okay with that?
You are giving people permission to break up families, perform invasive examinations, etc. and incredibly you seem to think you are doing the right thing.
I’m glad I saw this. I’ve just finished reading a novel that has an autistic child as the child of the two main characters (The Perfect Wife, by JP Delaney) and the author has an autistic adult son. He (the character as well as the author’s son) is subjected to ABA and aversives. When I wrote my review I shall definitely be referencing this post.
I ‘enjoyed’ this read Ren, thanks for pulling it together. It alarms me that any parent would want to put the amount of effort into changing their child in the way that ABA purports to do. How could we ever start without an assumption of competence, intelligence and empathy? As a parent of an both autistic and NT children, I believe it’s my job to help them find the ways for them to interact and engage with the rest of the world and society that allow them to be the best versions of themselves. I hope to bring the same approach to any neurodivergent individual I work with as well.
I’ve read both sides of the argument thus far, and personally I wonder if there isn’t a much simpler solution right under our noses that nobody has thought of yet.
Eye-tracking technology has the potential to do everything facilitated communication and its relatives are capable of doing, and as it does not require facilitation at all (being AI-based), so it rules out the possibility of the ideomotor effect or any kind of attempt at deceit from a facilitator altering whatever is being communicated. Lying would still be possible of course, but it would at minimum allow the assurance that it is the autistic person alone who is communicating.
Additionally, it avoids the allegations of not being “evidence-based” because it has already been found to be effective in other conditions that impair communication- it is commonly used in cases of locked-in syndrome, an obscure neurological condition in which the person affected by it is conscious but incapable of communicating due to total paralysis of nearly all voluntary muscles. The eye muscles are typically unaffected by this condition, allowing them to communicate using eye movements alone. Incidentally, this also means that eye-tracking could be effective even for autistics whose motor control is so unreliable that typing may not be an option.
Eye-tracking is a great AAC technology, but how well does it work for someone who depends heavily on peripheral vision? Even for the ideal target population for eye-tracking (severely physically disabled people who readily use eye contact to communicate in everyday life), it takes training to control their eye gaze precisely enough to use an eye-tracking AAC device. Anecdotally, many FC users and people who’ve graduated from using FC to independent typing often type without seeming to look at the keyboard, using peripheral vision and/or motor memory to type. (Incidentally, many non-disabled people also type without looking at the keyboard, especially skilled typists.)
There are breath powered AAC devices. The most extremely physically disabled people who can barely move/ talk at all have found AAC devices for them… there is no reason to use FC.
Somehow I missed until now this second follow-up article by Ren Everett dated July 30, 2019. I have yet to read either follow-up article about Facilitated Communication.
And of course I want to be notified about new comments via email.
Then I checked this website further and found that in September there are 4 entries about articles on nonspeaking autistics deleted from Wikipedia – Tito, Lucy Blackman, Sue Rubin and Amy Sequenzia plus article of Anne McDonald was merged into Rosemary Crossley article. I don’t know when I will have time to read all these entries but I would like to thank Ren Everett for his efforts and the others who helped him. Ben and I are now trying to focus on the issue of research fraud by some of the opponents of Facilitated Communication, an issue which I believe I first publicly raised in 2011 as a comment on a joint blog of Kim Wombles and James Todd, where my comment was later deleted but I saved to my email. I largely got sidetracked, as I often do, but I will try to pursue this issue now.
I have now read all three July 2019 entries by Ren Everett about Facilitated Communication.