facilitated communication – NeuroInsurgent

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.

Logical Fallacies in the Facilitated Communication Debate

This article was originally published at The Aspergian.

I recently published an article about the erasure from Wikipedia of autistic people who use or have used facilitated communication. The response has been overwhelmingly positive, but there have been a few persistent arguments that violate the principles of argumentation as they are taught in critical thinking courses in university.

In particular, I want to address some of the logical fallacies people fall back on when the topic of facilitated communication comes up.

Logical fallacies are errors in reasoning. Some of these incidents of faulty reasoning occur so often that they have been given names (e.g., “straw man,” “ad hominem,” “red herring,” etc.)

In order to address these in a critical sense, I need to first be quite clear about what my arguments actually are, because those themselves keep getting twisted by critics. And since I’ve been criticized for not including in-text citations by those who don’t want to click links to find information, I’ll even include them.

First argument: We should presume competence of non-speaking people.

Current tests of intelligence require someone to speak and move reliably. (source) Competence of non-speakers, who often also have motor difficulties, cannot be judged by these standards. (source)
The part of the brain which controls the ability to speak and the part of the brain which processes language are not the same. The Broca area is responsible for forming and producing speech (source), and the Wernicke area is responsible for language comprehension (source).
Research indicates autism may, in fact, be characterized by motor and sensory challenges (source); the intelligence of autistic people has been underestimated under previous understandings of autism. (source)
None of the conditions that may result in being unable to produce speech necessarily include intellectual disability. (source, for ASD)

Second argument: There is no scientific consensus on FC or RPM (or: FC and RPM have not been debunked or proven pseudoscientific.)

There have been studies conducted where the evidence has failed to support authentic communication. (source)
1. Researchers have attributed the failure and evidence of facilitator influence to the ideomotor phenomenon. (source)
There have been studies conducted where the evidence has supported authentic communication. (source, source)
1. Researchers have used linguistic analysis (source), eye tracking (source), development and use of verbal speech while typing (source), and successful message-passing (source) to verify this.
2. Further, there are many who have used FC and RPM to develop their motor functioning enough to graduate to independent typing or pointing (source).

With these facts in mind, I encouraged activists and advocates not to dismiss these methods of communication out of hand, as doing so would contribute to the erasure and silencing of our non-speaking autistic siblings.

Though my article was mostly well-received, it did attract a few critics. None of them have presented an actual counter-argument yet. Many have made use of logical fallacies, and I’d like to address them for the benefit of others who might encounter them.

Straw Men

A straw man argument occurs when the original argument is misrepresented, making it easier to defeat. The major straw man fallacy I have encountered is the interpretation of my argument as a black-and-white, shut-and-close opinion.

“You unquestioningly believe that FC and RPM work.”

I provided a lot of information in the previous article. I didn’t come to my conclusion without questioning it, doing the research, and reading about the methods. I definitely expect people to question a method that has been the subject of controversy. That’s why I included so many links to articles and studies.

I mentioned that FC users have spoken about facilitator influence that they have experienced. I mentioned that FC and RPM are still developing best practices for use. I mentioned that information with significant consequences should be verified. I think I’ve been quite clear that I think the methods can be unreliable. Even spoken words from people with apraxia of speech may also be unreliable and should be verified with them.

Yes, they work. The problem comes when you assume that “they work” means “they are 100% effective 100% of the time.” You won’t find me saying or implying that, but you’ll definitely find people claiming that I did.

Red Herrings

Red herring fallacies are distraction tactics, and a lot of different fallacies can be covered under them. Most of the ones directed at me have been appeals to irrelevant information.

Appeal to Emotion

An appeal to emotion is a fallacy in which emotionally-laden words and arguments are used as reasoning. Despite outlining the reasons for my argument quite clearly, I was accused of making a “feelings-based” argument in the comments of the previous article. This was particularly interesting because the counter-arguments that same person presented were “feelings-based” appeals to emotion.

“FC has been used to justify abuse and murder.”

True. However, these cases are rare and having been used to justify abuse and murder doesn’t negate evidence of authentic authorship. That’s why I didn’t mention it in my article.

Further, FC has also been used to validate allegations of abuse (source). I’m of the opinion that removing someone’s method of communication because they might accuse someone of abuse is inhumane. It’s not a decision made to protect the person communicating; it’s a decision made to protect everyone else. False allegations are not specific to FC. Using abuse allegations as a counter-argument is not a reason to prevent others from accessing it.

Use of loaded language

Both sides in a debate will likely use loaded language to sway others to their position. I certainly do, but I also don’t use it as my main argument. Critics believe that they are defending those who would use FC or RPM from being “exploited” or having their voices “stolen.”

I have heard comparisons made to “puppets” with their “strings” being controlled by facilitators. I have seen FC compared to identity fraud, etc. These comparisons may sway opinion, but ultimately they fail to negate evidence of valid communication.

Appeal to Authority

An appeal to authority is when someone points to specific authorities on a matter as proof. This happened a lot when I was on Wikipedia. I kept getting directed to mainstream media articles in which scientists said things like, “Everyone in the scientific community knows FC is debunked!” These were used as “proof” that there was a scientific consensus.

Yet, the fact still remained that there were many articles detailing evidence that supported valid authorship. Clearly, the evidence is conflicting. Why would I take random scientists’ and skeptics’ opinions of FC over the studies themselves? I stuck to the conclusion that there is no consensus.

Appeal to Popularity

An appeal to popularity is a fallacy in which an idea being popular is taken as proof that it must be true. A response to my article suggested Googling facilitated communication to see how widespread the claim of it being debunked is. Something being a widely-held belief does not negate evidence of authentic authorship.

Every new idea was once treated in the way that facilitated communication was. It’s not a logical argument for or against the practice.

Shifting Goalposts

Shifting the goalposts is less of a logical fallacy and more of a logical bias and often proof of a bad faith argument. It refers to changing the criteria for truth once the previous criteria have been met.

Within FC, I have experienced it like this:
“You need evidence” ->
“You need evidence in a peer-reviewed academic journal” ->
“You need quantitative evidence in a peer-reviewed academic journal” ->
“You need quantitative evidence in a peer-reviewed academic journal that has been Medline indexed.”

FC users themselves have also been subject to shifting goalposts:

“Your words are not authentic… if someone is holding your hand” ->
“if someone is holding your arm” ->
“if someone is touching you at all” ->
“if someone is in the room with you” ->
“if you ever used FC/RPM in the past.”

This final goalpost is why typists like Sue Rubin (and now Lucy Blackman) have been erased from Wikipedia despite the fact that they are both capable of communicating without a support person touching them (source and source); even being able to independently type is questionable to critics.

When the ideomotor effect no longer explains how non-speakers are capable of writing, opponents of FC go on to claim that non-speakers are being “subtly cued” to know what to type.

There’s absolutely no evidence for this, but people are so willing to cling to the belief that non-speakers can’t produce cohesive language that they’ve come up with new ways of discrediting them. This is particularly why competence is part of my argument.

Arguments From Analogy

When arguing from analogy, the stronger the similarities between the two things you are comparing, the stronger the argument. A logical fallacy occurs when the analogy is too weak. When discussing FC and RPM, people have tried to draw analogies with channelling, mediumship, automatic writing, ufology, cryptozoology, etc.

Anything that is considered pseudoscience is up for comparison.

These people fail to take into account that we are talking about a human being who is visible. Comparisons to people claiming to receive information from invisible beings are not relevant. Comparisons to unidentified flying objects are not relevant. Comparisons to Bigfoot are not relevant.

They are brought up to try and discredit the argument further, but they contribute nothing in terms of sound reasoning.

In conclusion…

Critics will surely continue to move the goalposts, but I’ve outlined my argument and supporting premises quite clearly.

Let’s stick to the facts from here on out.

FC, RPM, and How Wikipedia Became Complicit in Silencing Non-speaking Autistics

This article was originally published at The Aspergian.

Over the past few months, I was involved in an editing dispute on Wikipedia involving the efficacy of facilitated communication (FC) and Rapid Prompting Method (RPM).

What began with one contentious edit has now resulted in the deletion of the following biographical articles of autistic people from Wikipedia:

Amy Sequenzia, a prominent non-speaking self-advocate who is on the Board of Trustees for the Ausitic Self-Advocacy Network and has published multiple articles at Ollibean.com and the Autistic Women & Nonbinary Network;
Sue Rubin, a non-speaking author and consultant, who started communicating via supported typing and now types independently, subject and writer of the 2004 Academy Award-nominated documentary, “Autism is a World”; and
Benjamin Alexander, a non-speaking autistic writer and the first non-speaking student to attend Tulane University in New Orleans.

The editors responsible claim that no source that refers to any of these prominent autistic people can be considered “reliable” unless their method of communication is explicitly questioned.

Also, because I was the lone dissenting voice asking why someone’s measure of competence was subject to medical verification, I was topic-banned from editing Wikipedia pages that refer to FC and RPM.

In an article that he wrote after these deletions, one of the editors involved in this dispute called the wholesale removal of these articles — the complete erasure of living, breathing, autistic human beings and their experiences from the world’s largest encyclopedia — a “victory.”

WHAT!?

This is a ridiculous and convoluted story, so bear me with me while I try to explain what went down.

It started as a minor dispute when an editor added criticism of Amy Sequenzia’s method of communication by a noted skeptic to her Wikipedia article. I disputed this addition as potentially libelous; but instead of resolution, the matter escalated.

Another editor began to remove quotes from every non-speaking autistic self-advocate from articles about autism and neurodiversity, and then attempted to remove entire articles.

When I finally brought these disruptive edits to the attention of administrators on Wikipedia, I had already been dog-piled by uninvolved editors who: repeatedly questioned my sanity, insinuated that I was removed from reality, falsely accused me of having a conflict of interest, falsely accused me of being a sock-puppet (a secondary account to a more transparent primary).

They cornered me into having circular arguments with them, and then requested that I be topic-banned for having said circular arguments with them.

Administrators agreed, called me a waste of “productive” editors’ time, and I was indeed banned. None of the editors who abused me faced consequences for their incivility or for failing to engage me in good faith.

Talk about gaslighting.

How They Got Away with It

The articles were removed because of persistent myths surrounding facilitated communication.

Facilitated communication (also known as “FC”) is a controversial topic within autism advocacy. As an autistic self-advocate who dug deeply into the research about FC, I can tell you quite plainly that the Wikipedia article about it (which many people reference when they want to know what it is) presents a completely misleading and often completely false representation of what FC is and how it works.

The very first line of the Wikipedia article conflates facilitated communication with “supported typing” and “hand over hand.” Of note, as much time as I’ve studied this topic, I’ve not yet seen any scientific studies refer to FC as “hand over hand.”

The second line: “The facilitator holds the disabled person’s arm or hand during this process and attempts to help them move to type on a keyboard or other device.”

Just like that, you now have a mental image of a disabled person being physically manipulated by someone holding their hand so that they can type on a keyboard. Of course that sounds bogus.

How is FC described by the people who actually teach people to communicate with it?

Straight from Syracuse University’s Institute on Communication and Inclusion:

Typing to communicate or Facilitated Communication (FC) is a form of Alternative and Augmentative Communication (AAC) in which people with disabilities and communication impairments express themselves by pointing (e.g., at pictures, letters, or objects) and, more commonly, by typing (e.g., with a keyboard).
The method involves a communication partner who may provide emotional encouragement, communication supports (e.g., monitoring to make sure the person looks at the keyboard and checks for typographical errors), and a variety of physical supports, for example to provide backward resistance, to slow and stabilize the person’s movement, to inhibit impulsive pointing, or support rhythm; the facilitator should never move or lead the person.

Well, that sure sounds a lot more reasonable. Unfortunately, since the consensus made up by Wikipedia editors is based on 20-year-old misinformation about FC being pseudoscience, this website that describes the method by the actual people involved with it would be considered an “unreliable” source.

Isn’t Wikipedia supposed to present a neutral point-of-view?

You are correct; it should!

However, a combination of Wikipedia editors from the “anti-neurodiversity” or “neurodiversity-critical” movement and editors who are interested in pseudoscience and fringe theories have decided that FC, along with another communication technique that involves a support person, Rapid Prompting Method, has been “debunked.”

I was topic-banned specifically for questioning this consensus, decided upon by these editors, half of whom have a vested interest in silencing non-speaking autistic self-advocates who are in favour of neurodiversity (so they can continue to claim it excludes people they deem as “low-functioning”), and the other half of whom seem to have no actual working knowledge of autistic people, facilitated communication, or human competence.

For the ones who are actually interested in science and not pushing a negative narrative of autism, it’s not a completely far-fetched conclusion for them to make. The myth that the technique has been debunked has been repeated over and over by scientists and behavioural analysts in mainstream media, and famous skeptics have publicly questioned users of both FC and RPM, referring to the existing quantitative data as “proving” that it is illegitimate.

What does the evidence actually show?

I say this with absolute certainty as someone who actually read the damn studies myself: there is NO actual evidence that either FC or RPM are “pseudoscientific” or “debunked” methods. None.

The controversy stems from quantitative data from studies conducted in the 1990s which showed proof of facilitators influencing the messages being passed by the communicators in controlled settings. Again, I looked at these studies myself, and I don’t dispute these findings. The problem, however, lies in the generalization of these results to every single message produced by FC.

Let’s be quite clear: the evidence did NOT show that every single message was influenced by the facilitators. It is only possible to show clear facilitator influence in a situation where the facilitator knows information that the communicator does not.

In situations where both of them have access to the same information, you simply cannot conclude with any certainty that the facilitator is influencing the message. There’s no way to know.

Why did people come to that conclusion anyway?

Two reasons: the first reason involves the “ideomotor effect.”

When facilitator influence was found to be present, researchers came up with a theory involving the ideomotor effect to explain why facilitators had been so sure that they were authentically communicating with non-speaking people.

The ideomotor effect has been used to explain the phenomenon which happens when one is using dowsing rods or a Ouija board. Essentially, even though the facilitator didn’t feel themselves influencing the person, they were moving them subconsciously.

This may very well explain why facilitator influence was present in some studies. I wouldn’t dispute that fact. In fact, non-speaking folks who use FC and RPM talk about facilitator influence that they themselves have experienced!

However, once again, I stress the importance of not generalizing to every single message produced by FC.

But why not generalize?

The answer to that is reason number two.

If you have been around autistic advocacy for awhile, you may have heard something about “presuming competence.” This essentially means to treat every person as if they are a full, thinking human being who understands language.

If someone were to put their hand on my shoulder while I was typing this article, authorship of my words would not be questioned. I have enough control over my motor functions to move my body reliably. I can speak out loud. I can verify that the words are indeed mine in a way that is recognized as “competent” by the majority of the world.

If you were to take the results of FC/RPM studies that were completed in controlled settings and extrapolate that every message passed with those particular techniques was influenced, you would essentially be saying that not being able to speak or to move your body reliably means that you also cannot think.

Why should I believe that non-speaking people can process language and think?

I graciously defer to the United for Communication Choice website on this matter, and I’ll paraphrase here:

Standard measurements of competence require the person to reliably speak and reliably move their body.
The part of your brain that controls your motor functions, including the ability to get your mouth to make words, and the part of your brain that processes and understands language are not the same.
There is mounting evidence to show that autism is characterized by motor and sensory differences.
None of the diagnoses that are associated with being unable to reliably produce speech necessarily involve intellectual disability.

Despite this, people are still perfectly content to assume that non-speaking means non-thinking. Ignorance is one thing, but to continue to insist otherwise after being presented with the evidence is downright ableism.

Is there evidence of authentic communication via FC or RPM?

Overwhelmingly, YES! In fact, the number of peer-reviewed studies published in academic journals that support authorship actually outweigh the studies that don’t!

So what’s the problem?

Most of the studies rely on qualitative data rather than quantitative data. Essentially, the people who have been researching ways to validate these methods of communication for the past two decades (as opposed to those who have set out to prove it invalid) have mostly been concentrating on producing studies to help determine the best way to train facilitators, the best way to teach communicators, and in which situations authorship can be validated.

They have done this a number of ways: linguistic analysis of the communications produced, verifying information given that facilitators did not know, tracking the eye movements of communicators as they wrote, etc. And, of course, there are everyday people who interact with those who use FC or RPM or other methods who need no convincing that their friend or family member is communicating authentically.

For example, Arthur Leonard Schalow, an American physicist, co-inventor of the laser, and one of the winners of the 1981 Nobel Prize in Physics for work in determining atomic energy levels, was involved in bringing FC to the United States with Douglas Biklen. Schalow’s son is autistic, non-speaking, and types to communicate.

In the 1993 documentary, Prisoners of Silence, which came out following one of the first studies claiming to “debunk” FC, Schalow says:

I don’t need any more validation. My son has given me a lot of information, much of which I didn’t know. A lot of it’s been about what he wanted, and it’s turned out that that’s what he did want. He asked even for a trip to Hawaii and he sat, good as gold, on the plane for five hours to Hawaii. And occasionally he tells me something I didn’t suspect, like at the restaurant a few weeks ago, he said– he typed out, “Look at her mane”– M-A-N-E. Well, I looked and the waitress had a ponytail.

The man was clearly intelligent, and despite the evidence claiming otherwise, he firmly believed his son was authentically communicating with him. Given everything I’ve read so far, I don’t see why he shouldn’t.

Moving forward from here…

Why did I spend hours of my time researching FC and RPM, arguing with ignorant Wikipedia editors, and then write a 2,000 word article about it if I don’t have a vested interest in the methods?

Because I believe it’s the right thing to do.

I am not saying that every single communication passed through FC or RPM is always valid, but I am saying that we have no reason to assume they can never be valid. On this basis, I think that autistic self-advocates who can speak or type without a communication partner seriously need to step up their game when it comes to our fellow autistics who cannot.

FC, RPM, and other methods of AAC may be in their early stages of development and require much more research before they are consistently validated by quantitative studies.

The longer that we allow people to refer to these methods as “debunked” or “pseudoscientific,” the longer it will take for people to take these methods seriously enough to consider further research, and the longer non-speaking autistic people will continue to be silenced.

The way forward for advocates and for parents of autistic children:

Presume competence in non-speaking people (because you have no reason not to).
Correct people who claim that FC or RPM is “pseudoscientific.” These methods are not medical treatments that can be debunked. They are forms of communication which require further research to be consistently validated.
Verify information that has important consequences for the person communicating (decisions about living arrangements, allegations of abuse, etc.)
Listen to non-speaking autistic people.

All people deserve the opportunity to authentically express themselves. Singling out one method of communication as invalid when it could be the only method that someone can use to communicate is reprehensible, particularly when there is overwhelming evidence that it can be valid.

That people have called FC an “abuse of human rights” has me gobsmacked (e.g., in this Forbes article that uses the Wikipedia page as its source that FC is “thoroughly debunked”). How is giving someone every opportunity to authentically communicate “abuse” unless you believe that the person is a mere puppet with their strings being pulled or something akin to “channeling,” as one Wikipedia editor put it?

The real abuse of human rights occurs when you presume incompetence.

Communication is a human right.

Further information from non-speaking autistic people on FC and RPM

Other Notable Resources to Check Out

Syracuse University – Institute on Communication and Inclusion

United for Communication Choice – A coalition of disability advocacy groups

ASAN Letter to ASHA On The Right To Communicate

“Facts about Facilitated Communication” by Douglas Biklen

“About Facilitated Communication” by Ralph Savarese

Wikipedia References (Updated July 20, 2019):

Some of the Wikipedia pages that detail the dispute I’m referencing:

Unfortunately, the vast majority of incivil comments and false accusations directed at me occurred on the Talk page for Amy Sequenzia, which has now been deleted, so I can’t link to it. A Wikipedia administrator would be able to access and verify this.

Potentially of interest, one of the involved editors was once reported to the Administrators’ Noticeboard for these exact types of edits. It doesn’t appear that anything came of it.

Current Status (Updated July 20, 2019):

DELETED: Tito Mukhopadhyay, a non-speaking autistic author who uses RPM
NOMINATED: “The Mind Tree”, Tito Mukhopadhyay’s second book
NOMINATED: “Autism is a World,” the Oscar-nominated documentary featuring Sue Rubin (whose page has already been deleted)
DELETED: Lucy Blackman, a non-speaking autistic author (added July 11, 2019)
Not nominated for deletion, but the article of Anne McDonald, who was a disability advocate and activist with cerebral palsy, has now been targeted as the comments on this article have brought her existence to the attention of a certain ND-critical editor. (added July 11, 2019)
DELETED: Birger Sellin, the first non-speaking person to become a published author in Germany (added July 13, 2019)
NOMINATED: Larry Bissonnette, an American artist and autistic activist (added July 20, 2019)
NOMINATED: Naoki Higashida, a Japanese author, poet, and essayist, called one of the most famous authors in Japan (added July 20, 2019)
NOMINATED: The Reason I Jump, one of Naoki’s books (added July 20, 2019)
NOMINATED: Fall Down 7 Times, Get Up 8, another of Naoki’s books (added July 20, 2019)

Expect more to come if no one steps up.