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
- “Independence through Dependence: Why I Need a Communication Facilitator” by Philip Reyes, a member of The Aspergian team
- “No, I’m Not a Horse: A Refutation of the Clever Hans Comparison to Autistic Typers” by Ido Kedar
- “Interview: Amy Sequenzia on Facilitated Communication” at Thinking Person’s Guide to Autism
- “Facilitated communication gave me my own voice” by Tim Chan
- “How Facilitated Communication Works” by Kelsey Krause
- “What’s the Verdict on Facilitated Communication?” at Learn From Autistics
Other Notable Resources to Check Out
Syracuse University – Institute on Communication and Inclusion
- Information on Typing to Communicate
- Best Practices in Communication Support
- Research Supporting Authorship (and Research Not Supporting Authorship)
- Other useful resources
United for Communication Choice – A coalition of disability advocacy groups
- Quick Facts About Communication Choice
- Research Supporting the Use of RPM and FC to Communicate
- Videos of Advanced Learners
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:
- Archived discussion at BLP Noticeboard
- Archived discussion at Fringe Theories Noticeboard
- Archived discussion at Administrators’ Noticeboard
- Second archived discussion at Administrators’ Noticeboard
- Archived discussion of Articles for Deletion – Amy Sequenzia
- Archived discussion of Articles for Deletion – Sue Rubin
- Archived discussion of Articles for Deletion – Benjamin Alexander
- Archived discussion of Articles for Deletion – Tito Mukhopadhyay (added July 20, 2019)
- Archived discussion of Articles for Deletion – Lucy Blackman (added July 20, 2019)
- Archived discussion of Articles for Deletion – Birger Sellin (added July 20, 2019)
- Current discussion at Fringe Theories Noticeboard (added July 20, 2019)
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.
This article is also published at the author’s blog, NeuroInsurgent.
I make it my full-time job to improve my understanding of myself and others, question unchallenged perceptions of normality, and identify value in what I have to offer.
- 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
67 Responses
While I have no issue with FC, I find that the lady who developed RPM has some really wacky ideas about autism, especially the purpose of stimming. And some of the videos I’ve seen of her working with kids looked downright abusive. No spoons right now to go searching for the exact ones I saw but that’s why I don’t recommend it. That is not to say it doesn’t “work” or to take from what people who use it (or used it in the past) are writing.
I will admit that I’ve read much less about RPM than FC. I do know that Soma has apparently worked with Autism Speaks/Cure Autism Now, which is certainly iffy to me, but I also suspect that she might be onto something regarding the use of prompting. There is at least one contributor at The Aspergian who is trained in RPM (and one who uses it!), and they both probably have better input than I can provide. I hope what you’ve seen was not as bad as it looks, otherwise that is definitely a bit worrisome.
As a side note, I don’t want to sound like I’m promoting a specific individual or group of people who offering to teach FC or RPM. My interest is in the people who are using it to communicate; I want them to be taken seriously. (I think we’re on the same page there, though!)
RPM was created by Soma Mukhopadhyay, originally as a way to teach her nonspeaking autistic son Tito. As she learned that it could be used to teach others like Tito, she later formalized it to the method we know today. RPM is not a “communication method.” It is actually a gradual learning process that can lead to communication. At its core, the method presumes competence and uses academic teaching, rather than repetitive drilling, to engage the student in age-appropriate learning. Students participate back and forth, using a “teach-ask” paradigm. The teacher presents an interesting piece of information, then the student answers a question about it. It begins with pointing to written choices, then spelling the answers on an alphabet stencil or letterboard, then typing, speaking, or handwriting. The student develops in a broad range through these lessons by learning content, learning to focus their attention auditorily and visually to the lesson or task, practicing purposeful pointing and skill-building, and eventually coordinating all these things so open communication can be achieved, whether through AAC or more conventional means. Soma does allow stimming and understands why a student stims. She knows it can be calming and helpful in regulating the nervous system. When stimming becomes distracting from the lesson, her strategy is not to stop the stimming, but rather to compete with it in a variety of ways. It may be changing up her voice, drawing the other senses in, or using creative distraction (giving tape to play with instead or even playing music). As a parent whose son does RPM and now as a trained RPM provider, I believe RPM is one of the most respectful and helpful practices available to empower nonspeaking individuals, along with their families and teachers who support them.
Hi Lisa, I have a question you may be able to answer. What do you make of Soma’s words on her FAQ on her website about right-side and left-side brain learning? She also talks about holding a child’s left hand to curb storming with that hand? Also using a confined workspace for students who don’t like to sit still at a table.
I’m also still not convinced about your answer in relation to stimming. Those are not the only reasons to stim and I’m not sure competing with stims that are “distracting” from the lesson is such a good idea.
Yes, RPM might be more respectful than other practices. But I still have too many questions about it to fully support it as a teaching method.
I hope I can address your concerns. RPM is an evolving method. Soma is always learning and has revised it over the years. The FAQs on her website have probably not been updated regularly. I can tell you Soma is very practical. RPM sessions are only around a half hour. She wants to make the most of her time with students so she will do what it takes to help them be successful. The side to side sitting arrangement with a wall on one side is an ideal setting to keep kids focused for learning. However, she does not force anyone who is uncomfortable to do so. She has done lessons in the car, under the table, on the couch, walking with the student…in other words she follows the student’s lead. But if the student is able to sit at a desk, that is preferred. The comment on holding the left hand is specific to the challenge stated in the question- what to do if the child grabs both choices with both hands. If there is only one hand available to choose, then the child, in this case, will be more successful in the task of choosing a single choice. There is a lot of practical problem solving that goes on during sessions to help the person be successful, learn, and gain confidence. Unlike some other therapies, stimming is allowed. If the person is not engaging with the lesson, stimming is not stopped, but we will try to get the person to re-engage with us by hopefully making our lesson or delivery more interesting enough to re-engage. It takes creativity and trying to learn what it takes to interact with our student positively. Left/ right brain is not a concept Soma emphasizes. She initially chose to have teachers sit on the right side of the student because the language centers of the brain are located in the left hemisphere. I think the best way to learn about RPM is to attend a workshop in person. You can contact Halo about where Soma or another practitioner will be doing a workshop. These are open to the public for viewing how RPM is done and occur all over the US and even in some foreign countries. Best wishes.
You should know that the editor who called the deletion of these articles a “victory” at his blog, Cortical Chauvinism, has been doing a scientific study in a way no scientist should. I am referring to a study he did examining the structure of autistic people’s neuron connections. He looked at the difference between the autistic and neurotypical neuronal structures, immediately declared the autistic version to be defective and malformed, with zero substantial evidence supporting that claim and no idea what the autistic neuronal structure actually does or how it affects the brain of a living autistic person, and he pursued this study with a single-minded determination to find a cure for autism involving this structure.
That kind of scientific approach works great for a fictional scientist protagonist – really adds drama to the narrative and also usually the thing they are trying to prove actually exists in their fictional universe and it’s easier to show the single-mindedness in fiction than the actual nuanced way in which scientists going against the grain behave.
However, this attitude really isn’t so great for real scientists who should show real objectivity and should not, under any circumstances, plow through a study with the single-minded intent to find a specific result. That is how you get bad science. And misinterpreted data. So I do not trust a researcher who has an attitude like that. Even if he does show a bit of intellectual consistency in dismissing articles written about an FC user who supports his position. Because that one bit of intellectual consistency does not magically give him the ability to overlook bias in all areas.
And for the record, I suspect that some of the things Cortical Chauvinism found in autistic brains could go a long way towards explaining why so many (though not all) autistic people think primarily through non-linguistic and quasi-linguistic* means. But he is so bent on finding a cure that this particular notion never even crossed his mind (and it would have required him to ask pro-ND autistic people anyway). But that would, of course, require further research to confirm.
*quasi-linguistic meaning words, but word sequences that are only used in one’s thoughts within the specific context of a narrative (i.e. something a specific person said, or something from a movie, book, or some other medium exactly as remembered) – so thus the words involved are effectively used in the same way a nonlinguistic image or other nonlinguistic memory unit is used (those can include sense memories, the disembodied non-sensory idea of a concept, or half-sensory concepts such as rhythm or other cognitive integration of sensory information).
I think that the main author of that blog was not involved in the Wikipedia dispute; the editor who was involved is someone associated with him, I suspect (since he was able to publish that article on Casanova’s blog). To be fair, though, I’m not entirely surprised that anti-neurodiversity autistic folks are collaborating with a man dead-set on finding a cure. :/
The thing that makes me doubt the doubters is this: I have read words written by autistic people who at first used FC or RPM and then learnt to type independently. And their writing style remained exactly the same. The same vocabulary, syntax, even the same spelling mistakes. Also, now that they are typing independently, you’d think they’d be speaking out against FC if it were as bad as people say. But they’re doing the opposite.
Excellent article on Wikipedia’s behaviour. The anti-FCT (facilitated communication training, as it’s called in Australia) movement goes beyond autism. I’ve been trying to defend the Wikipedia entry for Anne McDonald, an Australian woman with athetoid cerebral palsy who died in 2010. Wikipedia has an interesting view of what constitutes evidence, so any academic article, regardless of whether it has any connection with Anne or CP, is evidence. Supreme Court judgements about Anne and referring to successful message passing are not. Neither are medical records, even with scans showing government ‘released under FOI’ stamps. The editors involved have no expertise at all in the areas in which they’re editing, and seem to rely on the Murdoch press.
As a person with Aspergers who was party to this I would it is a gross misrepresentation of what happened. Ufoology is not a medical practice, neither is cryptozoology, they are still all Pseudoscience (which is anything that falsely claims a scientific basis). It is this level of dishonesty and blatant advocacy for a questionable practice that led to those deletions.
To anyone else reading this, you are now witnessing one of the primary methods that people have been using to discredit anyone who thinks that FC can lead to authentic communication: compare it to completely unrelated and obviously pseudoscientific fields to try and make you sound like an uneducated hack while providing absolutely zero evidence to argue against. It’s a losing argument and a logical fallacy to boot. Don’t fall into the trap of arguing with these people. 🙂
And that is the same argument used by all exponents of Fringe theories.
Actually, my argument was this entire 2,000+ word article with citations. As for which argument is more convincing (my information vs. you making logical fallacies), we can let the readers decide.
Gosh, I saw your name a bunch of times while I was researching, and I’ll admit I was a little bit starstruck to see you comment here; you were fighting the good fight before I was even born! 🙂 I have my fingers crossed that spreading more (factual) information throughout the online autistic self-advocacy community will get this conversation restarted, and the benefits will spill over to every person who has communication difficulties.
I also told the editors I debated with that it was ridiculous to use articles and studies about other people to draw conclusions about the abilities of specific individuals; their response was essentially that “extraordinary” medical claims require scientific validation. But, of course, I don’t think that discovering that someone is literate when they finally have access to a method of communication that works isn’t an extraordinary medical claim.
My hope for Wikipedia here is that they consider creating a policy specifically around the respectful treatment of non-speaking folk and how they choose to communicate (particularly in their own biographical articles). Instead, the current consensus is to treat them with the same suspicion as people involved in spiritual and paranormal practises. Like I’ve already said… this is the real “abuse of human rights.” :/
I am particularly angered by the arrogant and bigoted assumption that any one who has autism must support this twaddle called FC. We are not all so incable of self thought that we need to be told what we think.
Well, I am particularly angered by arrogant and bigoted assumption that not being able to speak means you are an idiot. Congrats on contributing to the silencing of thousands of autistic people by people like yourself who are more than happy to share their gut feeling on the matter, but lend no substance to the discussion.
If you want to argue the merits of FC, I’m all ears. Otherwise, anyone who comes across this page is free to do the research themself. I presented facts. I provided links. The information is right in front of you. I don’t tell anyone how to think. Anyone who reads this article can decide for themself.
No one has said that. No one has said they are idiots, they just have seen no evidence that FC is anything more then the facilitator putting words into peoples mouths. As someone who has suffered for years because never bothered to test me for my needs I am angered when people who are not autistic tell me what autistic people need.
So what about the people who have used FC to justify sexual assault ON THE GROUNDS “THERE WAS CONSENT”? Why is it there is no recognized industry code of conduct or oversite body? Why in fact when there is evidence of abusing FC for personal gratification or gain the industry closes ranks?
It seems to me that FC practitioners are more interested in protecting practitioners then their clients.
First of all, I am autistic, and I’m not an FC practitioner.
Secondly, this very article that you are responding to contains sources for nearly everything you’ve brought up in this comment, which suggests me you came here to argue rather than learn. I included links to research proving FC and RPM do work, an outline of the reasons that people believe it doesn’t (hint: it involves believing that non-speakers are non-thinking), and even a link to “best practises” from Syracuse University where most of the research on FC is conducted.
Abuse allegations are a tricky subject, and they are constantly brought up to try to claim that campaigning for non-speakers’ rights to communication choice is somehow supporting abuse. So I won’t give my opinion on any specific cases, but I will point you to an article in which several abuse allegations made through FC were actually substantiated by doctors examining them and finding evidence of abuse.
https://www.researchgate.net/publication/15247046_Evaluations_of_Children_Who_Have_Disclosed_Sexual_Abuse_via_Facilitated_Communication
It was an excellent article that made sone interesting points. Wikepedia should not delete the articles of people just because they need help communicating. Many non-verbal people are intelligent and their contributions should be appreciated. Shame on Wikepedia
Wikipedia is just not an autistic-friendly place. Challenging mainstream ideas about disability can turn people very combative there, from what I’ve heard.
It’s why I prefer wikiHow.
On another note, I was researching facilitated communication recently and trying to understand why people could have such strongly differing opinions of it. I found two things that may be of interest:
https://journals.sagepub.com/doi/10.1177/1540796914555581
http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.1009.2859&rep=rep1&type=pdf
This suggests to me that there is currently no consensus on the efficacy of FC. It can be used correctly, and can be misused.
As I’m reading more of Wikipedia’s entries related to autism, I’m noting that they also seem about 10-15 years behind in a lot of their statements and accompanying citations.
This field is experiencing very rapid change, and as more and more autistics get involved that is going to pick up I bet.
Um, autistics as 1 or 2 per 1000 people? Wikipedia should be ashamed to have misinformation like that, even the CDC website is more current.
Perhaps we need more autistics to register as Wikipedia editors then, and get involved!
I very much hope that more people become editors as a result, especially since I’m restricted from it now. :p
I took one sociology class in college. The first assignment was to watch videos and read articles debunking FC. I bought into it and I have a lot of unlearning to do. I’m eager to change my thoughts on it because my professor was a gender essentialist and didn’t believe in non-binary genders even thought I was RIGHT THERE sitting in his classroom. Generally, I don’t think I should take his word.
I am upset that people discount those who type to communicate because they don’t understand autism or they want to keep doing what they have always done and not change.
https://youtu.be/ycRzIIwDBtk (video of comment being typed)
How do I know the comment was not edited?
Are you serious!? No, Yuval. This is unacceptable.
First of what, what remarkable ableism to even ask or expect a human being to substantiate that they are the author of their own words. But that’s what you wanted. You and people like you can only believe that he only has a voice and a mind and you can only respect him if you see him type with your own eyes.
And then you ask HOW DO YOU KNOW THE COMMENT WAS NOT EDITED!?
You HAD A VIDEO. A mother and a son are sitting on a couch in their home. A teen typed sentences. That is not newsworthy, Yuval.
Not being able to speak does not mean someone is not able to communicate.
What if someone did that to you? What if you had people not believing you were the author of your own words?
Yuval, what you are doing is erasure. It’s dehumanizing. Philip shouldn’t have to provide video evidence of himself to prove to you that he’s capable of thinking and communicating. YOU should assume that he can, and believe him when he says he can. And at the very least, think about what you are doing to a real human being when you insinuate he is not the author of his words.
You can literally HEAR the LETTERS as Philip types them. It literally spells out the words you are seeing in the comment box.
Can you show me a video of yourself typing your reply?
Just to clear things up, I did not request the video, I saw the link and clicked on it out of curiosity.
I can’t see the keyboard letters in the video, so I have no idea if he is even typing the correct letters.
I don’t communicate using FC, so I don’t need to prove that I can independently type with a video. However, if I was nonverbal and people requested proof, I would do my best to comply, but I would understand if they were somewhat skeptical.
Considering you were one of the main antagonists in this article, I can say with certainty that I have provided loads of evidence that you have already dismissed by simply moving the goal posts. There is a link in this article to “Videos of Advanced Learners.” Try watching some of those instead of harassing my commenters.
You obviously have no understanding of the nature of autism.
You have no idea if he’s typing the correct letters? Let me give you a little hint: qwerty. Does that help? Probably not. Your position isn’t skepticism, it’s denialism. Of the capacity to both independently type and independently think, Philip far more than you has provided proof.
Why do verbal people not need to prove that they are communicating independently? Why just nonverbal people?
Your existence can be faked or erased too… your status as an allegedly speaking human can be doubted too.
Video editing gets better every year, cheaper to do, computer algorithms better. Society is going to have trouble with that.
I’ve never met you and seen you speak with your mouth, by the way, all I see are some typewritten words here.
I don’t know that I’d accept a video of you speaking; how do I know it’s really you? It could be an actor or an amazing computer animation; in five years I bet such animations will be much cheaper to produce.
Even if a “real person” is in the video talking, how do we know it’s you; do you have your id; how do we know it’s real if so, just in a video? Do you have some authority figure vouching for you? I don’t know if I’d accept that either, the image of those folks can be faked too… hmmm…
Do you feel even a little scared thinking about all that? I sure do. Are you happy considering that we all might be skeptical that you exist?
You might not be taking my words here seriously, after all who knows if I exist?
Mark and Yvonne:
I’m not questioning the authenticity of the video, it’s that I find it hard to see the keyboard, since the camera is so far away. Yes, I know what a QWERTY keyboard is, but I’m not going to subject myself to constant eyestrain to see which keys are being typed when the video uploader could easily put the camera much closer.
Yuval:
A tad more mental strain could obviate the need for eyestrain and demonstrate good will, besides. You like science, right? Hypothesis: Philip is typing on a qwerty keyboard. Test: the letters he types (identified by sound on the video), appear in the approximate location where they would be if Philip were typing on a qwerty keyboard. How much time and mental strain would this test require? I was satisfied after about 10 seconds. You might want to continue for a minute or longer to be really sure.
What may require significantly more mental strain is reconciling the results of this test (assuming you replicate my positive result) with the sweeping conclusions which appear to have motivated your Wikipedia crusade and presumably inform other aspects of your life. Cognitive dissonance (speaking from personal experience) can be very painful and disorienting, but to a large extent it can be resolved, with enough open-mindedness, courage, and patient, loving effort. Supportive community (online or otherwise) can also help. Best wishes.
I’d agree, Philip doesn’t need to prove that he can type on his own, the provided videos prove that, themselves… BUT- this article isn’t about whether or not Philip can type on his own, he very well independently can… – it’s about the validity of a debunked & pseudoscientific method called “Facilitated Communication”.
What needs to be proved is that Philip had learned to independently speak through the methods proposed under “facilitated communication”, or if he simply learned said skills on his own, along with whether or not they can be replicated under the same exact environment… – i.e, can we bring in a completely non-verbal individual and teach them how to speak via facilitated communication methods, and than prove that said words are their words & only their words? – All the studies & current evidence points to the answer of this question being, “No”.
In which case if you, or anyone else wants for “facilitated communication” to be accepted as anymore than faux pseudoscience, than you must prove without a doubt that it’s both effective & replicable via a serious & neutral study, instead of relying on arguments of “But, you shouldn’t assume that it’s not their words”… – you have to prove it, prove that it works, prove that it’s their words, as the burden of evidence is on those who are supportive of “Facilitated Communication”, not on those who are against it.
If you can offer thorough evidence that “facilitated communication” is both effective & highly replicable, than… maybe we will change our thoughts on the subject, but into than no… – and a personal testimony will not work in the case of “facilitated communication”, one case does not prove a practice…
and this being said, I will treat “Facilitated Communication” as I do ABA Therapy, which I support… while personal testimonies are great, they do not prove a practice – rather the countless scientific evidence behind it, does… – get this scientific evidence behind “Facilitated Communication”, and than talk about it, into than it has no room to be apart of the autism conversation, especially due to it’s history of abuse, restraint & even murder.
Philip learned to type with RPM. His article on The Aspergian is the very first one I linked at the bottom.
I’m not addressing the rest of this comment, because you clearly came here to support Yuval and didn’t actually read the article, which has plenty of evidence that directly contradicts the claim that there is no scientific evidence. There’s plenty.
Next.
…as I apparently can’t reply to Ren directly (won’t show reply), will post here under my reply… – yes, I’ve read your entire article, it’s based solely on faulty arguments & feeling-based ideas, like presume competence… – It’s not at all based on factual information or data, come to me with factual information and I will read it too, just as I read the solely feeling-based arguments…
Let’s look at some links, that you so-happened to not include in your article, Ren.
“Facilitated” found guilty of sexual assault on an autistic person, justified by Facilitated Communication.
https://www.nj.com/essex/2015/10/professor_found_guilty_of_sexually_assaulting_disa.html
Here’s another one of those same cases.
https://www.sunshinecoastdaily.com.au/news/carer-i-fell-in-love/2422827/
Here’s a case where it was used to justify the murder of an 8-year-old autistic boy.
https://edition.cnn.com/2014/11/05/justice/new-york-autistic-death-trial/
Video from 2014, from Pro-F.C channel showing several people being facilitated, of which half the time they didn’t even look at the keyboard, very distinctly shown at 2:40
https://www.youtube.com/watch?v=DQcPsCVUHbs
Here’s a video from 2008 showing a child being restrained & forced even despite his cries of “No”.
https://www.youtube.com/watch?v=5H5AF3URJf4&t=311s
Should I go on? – I could include dozens more videos & articles that shows the immense abuse from facilitated communication, but I don’t see any of this addressed truly in this article, just pushed off as “Don’t generalize!”, without offering any good counter-arguments or evidence.
Are you going to actually point at which part isn’t factual data, or are you just going to claim it’s not true? Like every other dissenter here, you just repeat “not factual” and “dishonest” over and over without actually presenting me with an argument.
Is it not a fact that standard measures of competence require someone to speak and move reliably?
Is it not a fact that the motor control and language processing parts of our brains are different?
Is it not a fact that there is research emerging that autism is primarily motor-sensory issues?
Is it not a fact that autism does not necessarily require an intellectual disability?
If those are all facts, then presuming competence is not a feelings-based decision. It is a logical one.
You know as well as I do that ABA therapy has also resulted in abuse and murders. But you’re happy to promote it, even though your own therapist was abusive.
Pointing out how FC or RPM have been used incorrectly does not change the multiple studies proving authentic authorship. This is also a fact. All included above.
This simply isn’t true, I don’t repeat anything beyond the demand for evidence – I do notice plenty of claims of having evidence in your article, but no actual links or evidence cited, this is a no-no… must cite proper sources for supposed evidence.
and the problem with “presuming competence” in this case, isn’t that at all… it’s presuming competence in the facilitating which is done here, it’s presuming that they are not influencing the responses or faking them all-together… – it must be proven that their not through replicable methods.
Although I do make my own notes from back when I was fully non-verbal and than the several years of having a very limited vocabulary… which is that, I often did not understand what was going on around me, if someone had tried to use facilitated communication with me, it most definitely wouldn’t have been my words.
and this being said, I don’t generalize, I’m sure it may work with some – but we are looking at the big picture here, and demanding evidence behind said claims – the fact is that the wide-spread reported abuse paints the majority of the cases as simply pseudoscientific, now i’m willing to look at the evidence that they are not, but it must be provided.
and, in-regards to ABA Therapy, yes… my therapist was abusive, abuse happens – in which case I & many others who are pro-ABA demand tighter regulations & safe-guards to be in place for ABA Therapy… – but I don’t let my subjective experience decide how I view the teaching method over-all, and for the vast majority, the thousands of reports by parents, autistics & professional alike, I choose to believe… instead of pushing conspiracy theories.
– and this is a big difference between Faciliated Communication & ABA Therapy, ABA has thousands of testimonies behind it, from parents, autistics & professionals alike… Faciliated Communication has at most a couple dozen, you see the difference here? — a few dozen doesn’t help a practice, while thousands do… (of course that being said, F.C is rarely used to begin with). – but it’s definitely concerning the lack of a significant amount of personal testimonies.
I didn’t write this article to convince the anti-ND crowd to believe in FC. It’s for everyone else. I knew to block you within days of joining Twitter. Your reputation precedes you for picking and choosing what and who to believe.
I’m happy to talk to anyone who wants to discuss this topic in good fatih, but I have no interest in wasting any more of my time with you (or Yuval). I left Wikipedia so I wouldn’t have to deal with this nonsense.
I never claimed you did, this isn’t about neurodiversity or anti-neurodiversity, this is about Facilitated Communication, and the lack of evidence for it… – I am talking about this subject in good-faith, but I also demand the evidence for the countering-side.
This isn’t talking in “bad faith”, this is simply demanding that claims be proven, but I’m about done here as well, as I don’t have time for people who cannot prove their own claims, or listen to the real criticisms of said practice they are promoting.
“Men are generally right in what they affirm and wrong in what they deny. What we deny is generally something that lies outside our experience, and about which we can therefore say nothing.” —H. Richard Neibuhr
Why is nuanced discussion of FC and RPM so hard to find? Clearly, there are cases where unwitting facilitator authorship has been proven (at least for FC); there are cases where facilitation/support (using FC and/or RPM) has faded into unmistakably independent typing (see e.g. “Videos of Advanced Learners”, linked above); and there are cases which are ambiguous. How numerous each category is, can be disputed, as can the question of whether an individual case will lead to independence or to abuse (and meanwhile how long it will remain ambiguous). But to deny either the positive or negative potential of FC, RPM, or a related technique in an individual case (where both its specific application and the capacities of the individual are unknown and may be highly variable), seems irresponsible. (Also, polarized viewpoints seem to feed each other, engendering greater polarization.)
I am really impressed that you went to such lengths to research and understand FC and RPM. Aspies are often criticized for showing little concern for the non-speaking and you CRUSHED that argument! I tip my hat to you!
Thank you! I don’t consider myself an Aspie, though I would fit that definition if I was diagnosed when it was still in the DSM. :p But that was my intent — when I learned that ABA was highly criticized, I wanted to know why we weren’t concentrating on more communication therapies… and many hours later, this is where we’re at.
I think many people are turned off by the accusations floating around FC and RPM of them being pseudoscience or quackery… who wants to be accused of being anti-science, right? But the science does say otherwise; it’s just a matter of seeing what NT scientists missed. And if I can explain it to other advocates, I hope they’ll be more likely to look into it further. 🙂
A couple updates: “Tito Mukhopadhyay” has been deleted. “Autism in a World” has been kept.
Why would you do that? Regardless of his start, he is an independent typer now.
The Lucy Blackman page has been deleted.
The Birger Sellin page has been deleted. Also, another person and myself have nominated, Naoki Higashida, The Reason I Jump, and Fall Down 7 Times Get Up 8 for deletion.
Naoki Higashida, The Reason I Jump, and Fall Down 7 Times, Get Up 8 were de-nominated, and I don’t think they will be renominated. Also note that “Autism in a World” has already been kept.
“The Mind Tree” page has been deleted. Also, Naoki Higashida has been merged into “David Mitchell (author)”.
“Anne McDonald” has been merged into “Rosemary Crossley”.
Ren, you mention that non-speaking or limited speaking individuals who independently type should step up to the plate to advocate for FC/RPM and other forms of augmentative communication; however, what can speaking individuals do to help support the acceptance and validation of FC/PRM and other communication methods? I have a lot of friends who would love to support the idea of presumed competence and all ways of communicating but that want specific details on what to do to make a difference. What specifically is most helpful for speaking individuals to do to help non-speaking/limited speaking human beings?
Oh, I think you may have read that bit wrong. Independent typists are actually under just as much scrutiny as those who are still using FC, RPM, and other modes of typing and spelling. (Believe it or not.)
As for what we can do specifically, I’m not even sure at this point, besides the few things I suggested in the article at the end. It’s hard engage in the arguments because critics have a better grasp of the arguments *against* it than most advocates have information *for* it. So personally I’m just doing the reading myself so I can pass the information along to those who don’t know where to look.
But even those who have the information get pushback. This recent Twitter thread shows a good example of how the argument generally goes:
https://twitter.com/ekverstania/status/1154184190847574016?s=19
I tried to make the thread easier to read, but this is the best I can do. Sorry about that!
Rosemary Crossley has been nominated, as she personally requested it herself https://en.wikipedia.org/wiki/Rosemary_Crossley
My son Ben just FCed to me “It is time to be completely open about FC, starting with Ren, as you decide.” Soon before Ben wrote to me, I had read the twitter discussion that you cited in you last comment to this thread. I then looked at my own twitter comments and found that my last tweet was about half a year ago but on point to this discussion and I wanted to post it here but after I gave my son a chance to comment. As I tweeted in reply to Stephen Hupp, Susan Gerbic and James Todd on April 10, 2019 and as expected they did not reply:
“Replying to
@StephenHupp, @SusanGerbic and @jimtemu
When I last read the Wikipedia article on Facilitated Communication, which was about half a year ago, I did not see any mention of any association of FC with psychic claims, although such claims have been well-documented for over 25 years but not so much recently. Any comment?”
What happened to my first comment?
Public posts from late 2018 that i believe are relevant to this matter:
public post I wrote on December 1, 2018: https://groups.yahoo.com/neo/groups/autismfc/conversations/messages/2438
—In autismfc@yahoogroups.com, wrote:
The Skeptic Zone #526 18 November 2018 5:00-15:10 with Richard Saunders in Australia
https://skepticzone.libsyn. com/the-skeptic-zone-526-18november2018
Thanks to a reply on the Facebook group “AAC and FC” – I just read this update interview of Susan Gerbic of Salinas, California by Richard Saunders from Sydney Australia on November 18, 2018 about how her “Guerrilla Skepticism on Wikipedia” group on Facilitated Communication was formed in April, 2018, completely rewrote the Wikipedia entry on Facilitated Communication, and after success with University of Northern Iowa “we will go after other universities” that “we put universities on notice” so they can be successfully sued if FC causes any harm and that “facilitated communication is harmful; it is a pseudoscience.”
…my several public posts in late 2018 mentioning Susan Gerbic show that her involvement goes back somewhat earlier than April 2018 the date stated in the public post from the Yahoo!group autismfc that I cited here. My several other public posts provide evidence that she joined in an self-admitted conspiracy involving other opponents of Facilitated Communication (FC) such as Howard Shane and James Todd going back over 25 years where I have proof that these other opponents are guilty of research fraud against FC and that Susan Gerbic may actually be an innocent victim taken in by such research fraud. If you are interested in finding out about this research fraud against FC you can email me at golden.arthur@gmail,.com, noting that my own now 47 year-old son Ben, with nonverbal autism, was first introduced to FC by Marilyn Chadwick of Syracuse University in February 1991, and continues to be the most well-known and prolific user of FC in Israel, but mostly in Hebrew. It appears that Susan Gerbic is completely unaware of the existence of my son Ben, which I attribute to the very successful suppression of information about my son and others such as Adriana Rocha by the leading proponents of FC, including Douglas Biklen of Syracuse University. All the supporters of Facilitated Communication should thank you for your efforts to defend the truth even though I am not surprised that you were so far unsuccessful in dealing with Wikipedia.