As you know, autism runs the gamut between people who functional pretty normally to those who can barely function, require round-the-clock care, and cannot read, write, or speak. It’s often assumed that this is a “spectrum”: that is, a disorder with a unitary developmental/genetic cause that has various degrees of expression. Thus some groups that hope to ameliorate autism assume that the near-normal end of the spectrum require treatments similar in kind but not degree to those who show “profound” autism. Others think that the treatments needed are very different. The high-functioning people with autism can express what they want or need, but what about those who can’t express themselves?
This is the subject of the new Nature article shown in the second screenshot below. It’s also the subject of a critique of one part of the Nature article—a critique that appeared in Skeptical Inquirer (SI). SI is the well known magazine from the Committee for the Scientific Investigation of Claims of the Paranormal (CSICOP), itself an offshoot of The Center for Inquiry.
SI and SCICOP have devoted themselves to debunking woo, and their SI piece, written by psychologist Stuart Vyse, takes issue with one brand of woo historically involved with autism research: facilitated communication.
Facilitated communication was a method that, people thought, could allow profoundly autistic people who couldn’t read, write, or talk to communicate with others. The assumption was that with some assistance, the hidden verbal and mental abilities of profoundly autistic people could be revealed. This involved people helping the severely autistic people to “write” by using various devices. And lo, a trove of hidden thoughts were revealed. Sadly, it was eventually found that the “helpers” were actually prompting the autistic to communicate, and it was pretty much a scam, although perhaps an unwitting one. (It’s the equivalent of a Ouija board, where people think that they are not guiding the pointer but really are.) Here, let Wikipedia describe the method:
Facilitated communication (FC), or supported typing, is a scientifically discredited technique that attempts to aid communication by people with autism or other communication disabilities who are non-verbal. The facilitator guides the disabled person’s arm or hand and attempts to help them type on a keyboard or other device.
There is widespread agreement within the scientific community and among disability advocacy organizations that FC is a pseudoscience. Research indicates that the facilitator is the source of the messages obtained through FC, rather than the disabled person. The facilitator may believe they are not the source of the messages due to the ideomotor effect, which is the same effect that guides a Ouija board. Studies have consistently found that FC is unable to provide the correct response to even simple questions when the facilitator does not know the answers to the questions (e.g., showing the patient but not the facilitator an object). In addition, in numerous cases disabled persons have been assumed by facilitators to be typing a coherent message while the patient’s eyes were closed or while they were looking away from or showing no particular interest in the letter board.
Facilitated communication has been called “the single most scientifically discredited intervention in all of developmental disabilities”. Some promoters of the technique have claimed that FC cannot be clearly disproven because a testing environment might cause the subject to lose confidence. However, there is a scientific consensus that facilitated communication is not a valid communication technique, and its use is strongly discouraged by most speech and language disability professional organizations. There have been a large number of false abuse allegations made through facilitated communication.
The article is remarkably strong for Wikipedia, and has a long section on documenting the flaws of facilitated communication.
At present, though, the method is still used, and is an important part of the Nature paper. Now it’s often done with the “facilitator” holding up an alphabet board and having the autistic person point to letters that, they say, give a message. The thing is that the boards are always held up by a facilitator, who can move them around, and the autistic person can look at the “facilitator” for approval. They never do it with the alphabet board flat on a table and the facilitator out of view of the subject. Look at this video using the kind of facilitated communication touted in the Nature article, and you’ll see the issues. The facilitator moves the board around, and the subject looks at times at the facilitator, seemingly seeking approval. And it’s hardly credible that someone who cannot either write, read, or speak could nevertheless convey complex messages this way. But you don’t have to guess: experiments have debunked the whole method.
In the article below (click to read), psychologist Stuart Vyse calls out Nature not for its whole article (for parts of it are enlightening and reasonable), but for buying into facilitated communication. Here’s the premise of the Nature article involving facilitated communication, as stated by Vyse:
This renewed controversy over communication methods has emerged in the context of a larger political fight within the autism community. The Nature story was about efforts on the part of some autism advocates to have people with autism more involved in the planning and execution of autism research. In theory this sounds like a good idea, but this effort has been largely dominated by verbal advocates on the higher functioning end of the autism spectrum. As it is now defined, autism spectrum disorder (ASD) has a remarkably wide range that can include both highly verbal Harvard graduates and nonspeaking people who engage in repetitive and self-injurious behaviors. It includes both people who will be fine and may even thrive living independently and people who will never be able to live independently without substantial support.
Parents of children on the severe end of the spectrum argue that the needs of their children are substantially different than those of the verbal self-advocates on the other end of the spectrum. Furthermore, if the research agenda is driven by people on the less severe end of the spectrum, the approximately thirty percent of children with autism who will never develop speech will be left behind.
That’s why Nature is touting facilitated communication as a way of finding out how the severely autistic want to give input into their worldviews, their problems, and their therapy.
SI article:
The quote given in the Nature piece below (click to read) is taken from a severely autistic person pointing at a letterboard. And the entire quote, from Rachel Kripke-Ludwig, “a non-speaking autistic advocate and student based in Menlo Park, California” is even more complex (I’ve put the “communication” in bold below):
In the conventional approach, several researchers “are mostly working off the wrong set of assumptions”, writes Rachel Kripke-Ludwig, a non-speaking autistic advocate and student based in Menlo Park, California. “The best way to get it right is to listen to us.”
Here’s a photo of Kripke-Ludwig from Nature shown using the letter board:
Why does somebody always hold the letter board? It would be dead easy to see if people like Rachel could communicate without the help of a facilitator, but they won’t let scientists test that hypothesis, which would be dead simple to do. As Vyse says,
The new variants of facilitated communication involve the nonspeaking person pointing at a letter board with a finger or a pencil; however, rather than simply placing the letter board on a table, a “communication partner” holds the letter board in the air. It is not clear why this is necessary, but it is clear that the involvement of another person muddies the question of who is authoring the communication. Does the finger touch the letter board, or does the letter board touch the finger? Publicly available videos often show the letter boards bobbing around in the air while the nonspeaking person looks somewhere else. Furthermore, perhaps having learned a lesson from the 1990s, the purveyors of these letter board techniques have assiduously avoided participating in research that would definitively show who the author of the messages is.
Now testing this hypothesis is not a James Randi “million-dollar-challenge” issue—a simple debunking of woo. It is vitally important to know if profoundly autistic people can really communicate on their own. If they can, then it would overturn both the theories and treatment of autism, and also enable us to take advantage of their own ideas of what they need, which is the point Nature is trying to make. That is why this ability to communicate needs to be tested.
Nature takes it for granted that this is real communication. Click to read.
Not only does the article neglect the decades of work showing that facilitated communication is bogus, but presents statements by people like Kripke-Ludwig as if they really come from the subject and not the facilitator, and endorses the method (my emphasis):
Many autistic people see that as a step back to labels that they have rejected. “I am profoundly gifted, not profoundly low-functioning,” writes Payam, a non-speaking autistic advocate who is based in Atlanta, Georgia. Payam is not an exception, says his mother, Parisa Khosravi. “We need to presume competence and listen to our non-speakers,” she explains, “rather than assume intellectual disability.”
Many other autistic people who are non-speaking or have intellectual disabilities have found ways to speak up for themselves, says Zoe Gross, director of advocacy for the Autistic Self Advocacy Network in Washington DC. “It is completely inaccurate to say that as a group, autistic people with intellectual disabilities, or nonspeaking autistic people, can’t advocate for themselves,” she wrote in an e-mail. “Not all autistic people have access to a communication method that works for them, and for some people, the currently available communication methods may just not work.”
If they could write for themselves, or even point at a static letterboard without guidance, we might accept these statements, which could lead to profound advances in treating autism. But, since the facilitated communicators won’t let their method be tested, we’ll never know. This is one example of what is likely to be woo, or a quasi-scam, impeding science. Nature is not behaving scientifically here, and in fact may be impeding the treatment of people with severe autism. Will different “facilitators” give different answers? How do we know they’re not in cahoots, making stuff up? They might mean well, or even believe that they are bringing out hidden words to help people, but we won’t know that without scientific testing of the methodology. As I said, such tests are not rocket science, and, when used on other means of facilitated communication, invariably show it’s a sham.
As Vyse notes:
Finally, in an odd alliance, some parents of nonspeaking individuals who believe in facilitated communication or one of its variants have been recruited to this fight by the advocates on the higher functioning end of the spectrum. Thus, you have the peculiar situation of an article in the scientific journal Nature, whose title is drawn from a quote that the American Speech-Language-Hearing Association says “should not be assumed to be the communication of the person with a disability.” We have no evidence that the person being quoted said those words, and yet she is being put forth as the poster child for a highly politicized movement. In my view, this is the real travesty. This person has achieved remarkable visibility, including quotes and a photograph in a widely read science journal, yet the available scientific evidence suggests that rather than speaking out for herself she has been silenced and someone else has substituted their voice for hers. All of this may have happened with the best of intentions, but if I am right, it is a substantial injustice nonetheless. And the journal Nature, which ought to know better, is complicit in making it happen.
To learn more about the perils of facilitated communication, visit facilitatedcommunication.org.
Frankly, this is a serious misstep on the part of Nature. Even if facilitated communication eventually did prove to work in some cases, Nature should, at the least, point out the serious issues with it.
UPDATE: This Frontline Video, “Prisoners of Silence”, was noted by a reader in the comments; it shows how the method works (it’s always “facilitated”) and how it was debunked. The power of confirmation bias was strong; in fact, there was no evidence that facilitated communication worked. My one question is this: if the facilitators were sending the messages unconsciously through the subjects, why did so many of them produce messages that the subject was sexually abused?
I wonder if “Facilitated Communication” might simply be an experience for the subject which isn’t itself useful, but sets them at ease for something they do next.
I could see some sense in that – maybe a placebo effect – but apparently that isn’t the idea here. They are determined to see it work.
It may relax the subjects or make them happy, but the point, as you recognize, is to help them communicate what they want to say.
They hold the letter board in the hand, rather than placing it flat on a table, in order to avoid subjecting the technique to a rigorous test. Doing so, would definitively show the technique to be without merit (oops, that evil word), and the entire enterprise of facilitated communication would go away. Not subjecting the technique to a risky test allows it to live another day.
aside, somewhat …
With anything having to do with autism, such as “facilitated communication,” I suggest claims be “peer reviewed” by Temple Grandin. And Elon Musk.
::::: smithereens :::::
As a high functioning autistic (and bipolar) person who researches neurodiversity and brain disorders, I regularly point out that neurodiversity is necessarily about viewpoint diversity. A common saying about the autistic is “If you’ve met one autistic person, you’ve met one autistic person.”
The new illiberalism, censorship and expectations political and ideological conformity (such as coming from Nature and Scientific American, and as regularly documented by Prof. Coyne) are the antithesis of supporting people with disorders, and, for that matter, any identity demographic (race, ethnicity, sex, etc.).
I wrote about this in below article, ‘Intellectual Freedoms Support Diversity: a neurodiversity perspective.’
https://davidcycleback.substack.com/p/intellectual-freedoms-support-diversity
Thanks for the link, David!
Let’s not forget that mediums practice “facilitated communication,” too.
Good one! And why don’t the FC advocates just use the Ouija board?
In the Frontline documentary on Facilitated Communications, Prisoners of Silence, which was aired 30 years ago, it seemed that the first person who even thought to test FC was the lawyer for a child who accused someone of sexual abuse via FC. The lawyer devised a very simple experiment in which the child was shown pictures and asked to describe what he saw. When the facilitator could not see the pictures, the child could not describe them. It was devastatingly obvious whose mind the words were coming from.
It was shocking that Syracuse University had established a whole institute devoted to pushing FC but had never done anything to validate it. The experiment was as simple as it could be.
Watch the documentary if you can find it. Your jaw will drop.
I found the video here: https://archive.org/details/PrisonersofSilence
It’s free.
I taught a class called “Science and Pseudoscience” for many years, and watching Prisoners of Silence was always one of the class highlights. It’s a very powerful film.
GCM
I was TA for a similar class, focusing on history and human migration. Although the subject matter was fairly specific, it was really about developing a skeptical, evidence-based mindset, and trying to understand what makes people fall for nonsense.
The students who took the class and understood the material were pretty unlikely to fall for things like FC if they encountered them later in life. I imagine nearly all of them ended up atheists as well.
And on YouTube
https://www.youtube.com/watch?v=CzCGux7qD1c
This is not available to American readers (it’s the “facilitated communications debunking” video
It is sad that even the most renowned journals publish junk. Thank you for this post.
I’m autistic (high functioning is the term I use) and can speak, read, write (rather slow and clumsily) but even then, often have issues getting stuff out. And I’ve worked with those who are to put it mildly totally clueless. My only issue was I was both compared to them and not given educational support when they were as I was regarded as “normal enough” (whatever that meant) when they were given it all. I remember one, a total fool, but a really nice guy being talked through a math question and going “yeah” or “ok” and then the next one was the same formular, just different numbers and the women helping him asked him to do it as they did before saying it was the same thing, just different numbers and the poor guy had no idea what was going on.
I felt so sorry for him, disgusted at her and annoyed at the fact I never needed as much help as that but got none when it was all given to guys like him and never worked.
I regarded it as a waste of resources.
I have personal experience, and that of my son as well, and agree with you. Sometimes we can “pass” by simulating typpies so well that no one begins to understand the difficulties we still have. The subtleties of verbal and non-verbal communication are lost, and the anxiety engendered by saying or doing the wrong thing as a result makes it easier just not to bother. I managed, but my son came a cropper. He’s very smart, and got a double honours in math and physics with a third major in philosophy, but when he went off to do a master’s in physics he was totally unsupported and ended up leaving. It’s a strange thing, being both clever and helpless at the same time!
(You get my reply from before? My account is acting up big time)
Well, I’m proud of your son for how far he went, more than me and I wish I could’ve, then as a Kiwi even at the age I was going for it in life there wasn’t many options, today there are none.
I found it hard to keep pace in class and recording information and the like, at school this is and at high school somehow was in a class they put all the worthless jerks in, which made it worse.
It was even known and acknowledged what support was needed but as I was smart and well-read was deemed not to need it over guys who were to put it bluntly, hopeless and clueless and I hate saying that about them. They just asked why a smart guy like me needed help. That and the bullying didn’t help, and aspies don’t take people being annoying let alone bullying well.
Thanks for this post and the link to the articles. Advocates with this view are firmly opposed by people like Freddie de Boer who emphasize how unfair it is for those with mild impairment or disability to claim to speak for those who are severely afflicted. FC is a kind of shield used by advocates against this criticism. (“See, I’m not speaking for the profoundly disabled, they really can express themselves, and go to conferences, and be university students, even if they can’t actually speak.”)
The vimeo about her life & advocacy shows about 25 seconds of Rachel using a letter board with a facilitator. The rest of the video uses a voice actor reading from Rachel’s letter board output.
[I’m trying to edit the link to vimeo without the darn thing embedding:
vimeodotcomslash769065769slash57c53f0a63]
The video doesn’t seem to show the facilitator moving the board very much under Rachel’s pointing finger, but there is some movement of the board. There is one point where Rachel obviously looks at the facilitator for encouragement or affirmation that the right letter has been chosen. The phrase that is spelled out is short and generic (“HIIMRACHEL”, no lower-case letters or punctuation) and could be memorized by a non-verbal person who lacks the cognitive ability to express language but has the desire to please and be affirmed by the facilitator. My profoundly disabled sister was such a person, and has many such friends. But that may be an uncharitable reading of the video.
Am I the only person who noticed that “Rachel” has a pretty good beard-and-moustache game, prominent brow ridges, and an adams apple, and is maybe a transwoman? Trans identities and autism go hand-in-glove to such an extent that it’s hard to ignore here as well as in other instances (like the Tavistock scandal). Happy for others to tell me I’m not correct in Rachel’s case.
It would be simple to have say, an autistic German being facilitated by a French facilitator who speaks no German. If the answers are in German, they might have a case.
Michael Shermer of Skeptic Society just tw**ted on this topic a few days ago:
He then links to an article (https://thepostmillennial.com/leading-trans-doctor-insists-non-verbal-autistic-minors-can-consent-to-sex-change-can-draw-their-feelings?utm_campaign=64506&fbclid=IwAR1Eg6jYclreXQrXtpPQiQDAuFKqNxAuKMffD_-yoJGmfxgRUsewQSfEVs0) which, as far as I can tell, doesn’t mention Facilitated Communication, though it sounds like the experts at the conference were being pretty pseudo-sciencey in other ways.
Probably, the article would be more accurately titled “Leading trans doctor insists non-verbal, autistic minors can consent to sex”. I suspect that is where a lot of this is going to lead.
Those who advocate for (rather than investigate) treatments such as “facilitated communication” often have an interest in asserting the effectiveness of the “treatment.” They collect huge fees for their “services” and claim that anecdotal endorsements from “satisfied clients” are all that are needed. This was one of the most important issues that led scientific psychologists to break away from the American Psychological Association (APA) in the mid 1980s to form what would become the Association for Psychological Science (APS).
I think I watched the “Frontline” episode previously, but watching it again is pretty interesting. Right off the bat, it is obvious that some of those being facilitated do not even look at the keyboard, but manage to produce documents with excellent spelling and grammar.
That this Douglas Bicklen character is not bankrupt and shunned is sort of disappointing.
Ouija board effect. I know an old girlfriend who is the proud owner of an online degree that proves she is a ‘canine communications facilitator.’ At least her making people think they can communicate with their dogs with her as their intermediary is not as cruel as making people think they can communicate with a loved one.
And I thought this nonsense was disproven conclusively twenty or thirty years ago.
BTW, this sounds like a “with enough money from the gov’t we can ..” make work scam. Twenty five years ago a profoundly mentally-challenged woman where I live scalded her child to death in a bath. When I finally saw this women on TV, I was appalled. She could not take care of herself yet alone a baby. But as an ‘advocate’ said, with enough money people like her could get pregnant and keep the baby. It just took giving this person and his organization lots and lots of money. Lots of money. I guess babies scalded to death is an acceptable casualty rate for social equity.
See also the Wikipedia article on Belgian man Rom Houben.
I only just started reading about “facilitated conversation” – also apparently “facilitated dialogue” – and thought I’d make a note here, as I recalled “facilitated dialogue” and came back here to read.
I have nothing to really say about it (one can readily search for material), but I thought the similarity of the name was worth pointing out.
Typo: my meaning is that I recalled this post, and came to read it.