Scamming Autistic People: Exposing Facilitated Communication
Abhijit: So Janyce is here to tell us something about facilitated communication, which we should all be very aware of, especially if we have someone in our family or friends who is probably autistic or has some verbal disability problem.
It is quite remarkable the kind of things that I've learned over the last few days that I've been looking into this. And Janyce has been doing a lot of great work in promoting scepticism about facilitated communication, which we will find out about today. Welcome, Janyce. Thank you so much for joining us on Rationable.
Janyce Boynton: Oh, thank you for having me.
Abhijit: It's our pleasure. I wanted to start with, first of all, what is facilitated communication?
Janyce Boynton: Facilitated communication initially morphed over the years, but originally it was designed as a communication technique to work with profoundly impaired clients, usually autistic people or people with developmental delays.
And the original form of facilitated communication came in the support of a client at the wrist, the elbow, or the shoulder, to help type on a letter board or a keyboard. So basically, the facilitator, which would be the helper, would hold onto the client's wrist and support it lightly while the person points, and then they move towards a letter board to type.
And the whole idea was that by providing emotional support, you were able to help the person focus their attention on typing.
Abhijit: I see. So what are the kinds of conditions where this is used? I've seen primarily a lot of a lot of talk, especially among autistic people and children.
But are there any other disorders that they that this is used for?
Janyce Boynton: Anybody with a profound communication difficulty. So people with developmental delays. Some original people with cerebral palsy. That kind of person. But mostly it's associated with profound autism.
Abhijit: I see. And from what I heard about your talk at SkeptiCal, we were both at SkeptiCal giving talks on the white papers.
But from what I heard, you said you used to be a facilitator, so to speak.
Janyce Boynton: I did, I was. In the United States, facilitated communication started being popular around 1990, and Douglas Bickley brought it over from Australia, where Rosemary Crossley kind of "invented" it. There have been forms of this throughout the years discovered, debunked, and then discovered again.
and I was teaching, at that time, I was a speech-language clinician, and I was teaching in a school where the student that I had came with a facilitator. So I actually learned how to do facilitated communication first through that facilitator. And then I went to a training at the University of Maine, our local university hosting workshops on facilitated communication.
Abhijit: Did you personally work with some of these people and facilitate communication for them?
Janyce Boynton: I did, yeah. I only worked with one client, and she was pretty much nonverbal. I don't know that she's, she, even after I left, I don't know that she ever was able to communicate verbally in a functional way.
She could say some sounds, point to things, and make her needs known in nonverbal ways, but she wasn't very verbal. And that seemed to be the ideal client or student to work with, facilitated communication.
Abhijit: I do want to hear your story if you're okay with sharing it – your journey of how you discovered this and how it made you feel, what it made you do, and how have you progressed from that.
Janyce Boynton: That's a 30-year journey, but I'll try to make it short. Yeah.
It's actually quite surprising that I'm still talking about it in 2022, when it was debunked in early 1990. So that's part of the, that's part of the mystery or the appeal of facilitated communication in a way. As I said, my client came into the school system with the facilitator. The first thought was to give that person the benefit of the doubt.
It was a brand-new technique. It was marketed as something that was gonna, it was revolutionizing the way people felt about people with autism or what they knew about autism. And so we started using it. There were some rough guidelines about using it.
And we followed them. You look for hallmarks, like unique spellings or the person who's all of a sudden able to come up with unexpected conversation all typed, that kind of thing. We weren't sure what we had. And that's partly why I got involved with it.
I was a speech person, so we thought it was a language issue, I probably should be exploring facilitated communication with her when I worked with her. I know this now, but I didn't know it at the time, but part of the guidelines is that you use information that the facilitator already knows. So you're using it to get responses from the client, typed responses from the client. All you do is fill-in-the-blanks or multiple-choice kind of activities. Pointing to a picture, "Here's a picture of a cat, can you point to it? There are three pictures – a tree and a house and a cat. Can you point to the picture with the cat?” And so you hold the person at the wrist, and they point to the cat, and you're like, “Wow, that's really cool.”
She knows how to point to a cat, and eventually, you're getting words and sentences, and you do little tests like maybe there's a hamburger or a pizza for lunch. And you say, “What would you like for lunch?” And they type out pizza.
You know that, in your head, that kind of confirms these communications. It's a really slow process. The person, essentially (I know now and I'll give it away) is the facilitator teaching the person how to point on cue. That is really what happens. But you don't know that as a facilitator.
You go in not really realizing that. And they don't teach you that kind of stuff in the workshops. They tell you to presume competence, so you're not looking; you're not supposed to test the person. You're not really looking at your own actions. Or you might say in your head “I moved the person's hand that time, but I won't next time”. And then, over time, you're getting sentences and having these conversations. And what happens with the facilitators, you spend less and less time thinking about your own actions, and you're involved in what seems to be a conversation. And it's quite exciting.
All of a sudden, this person that didn't have any verbal communication skills is typing out words and sentences and giving their thoughts and cracking jokes and that kind of stuff. It's quite an amazing kind of heady process. Oh, and the other thing is that the whole facilitated communication process is about building trust with the person. So it might not work for one teacher, but all of a sudden, it works for you, and that person must trust you. That's the connection you make in your head.
Abhijit: So it guides you into a position where you just assume where you're not questioning yourself, you're not questioning the method, but you already have a bias going in, that this person is already mentally completely competent to communicate by themselves and you're just helping them along and
Janyce Boynton: True.
Abhijit: So it's an exercise in self-deception as well as deceiving everybody else as well.
Janyce Boynton: It certainly is. And the thing is when it works for one teacher, I could spot when the other facilitator was moving the person's hand and think, “Oh, I, that didn't seem like that was right. It seems like she's moving the person's hand.” But I didn't see it myself. So it's harder to see your own errors, and if you've got a bias, you're willing to say, "Oh she didn't mean to, but she won't the next time". There's a lot of rationalization for making it work. And the other thing is that this has actually grown since the 1990s. We didn't really know what was happening, but now the idea is that the person has fully intact intelligence and communication skills and literacy skills. Like you, they don't need to be taught. They just know it. They've somehow absorbed it from the environment. I've heard parents describing it as, "well, I didn't know my student, my son or daughter knew politics, but they must have picked it up from listening to the radio." Or that kind of thing. So there's a lot of fooling yourself. It's not how literacy is learned, or language skills are learned, but you want it to work. You're motivated to. I think the psychics call it “remember the hits and forget the misses”. So that it feels like you got the right answer.
You're like, "Honestly, it does work!" Say, take the lunch example again. She typed out pizza, but she grabbed a hamburger instead of a pizza. And you're like, "Oh, she just changed her mind", and she has a right to change her mind. So the communication is still accurate. Pizza was still accurate, but by the time from the room to the cafeteria, she changed her mind, and she wanted a hamburger instead. So there's a lot of that.
Abhijit: Yeah. So how did you figure out what was going on? That you were being deceived? Or how did you discover it?
Janyce Boynton: Okay, this is a really hard part of my personal story, and, but it's happened, it's been replicated many times, including with the person from Australia that actually invented FC.
This situation happened in my case. When you go to the workshops, they tell you that, once these people start communicating, they may also communicate abuses that they've gone through. So in my case, she started hitting me, and I didn't really know why. I thought everything was working fine. And in my head, I thought maybe something was happening at home. So once that seed is planted, it can be a dangerous thing.
And in my case, it turned into two allegations of abuse against the family. And so then we were like, “Okay, what do we do with this information?” And it went on for several weeks before we actually did anything about it. And if that was a typically speaking person, we would report it to our Department of Health Services, which is what we ended up doing. It's hard to admit it, and this is why facilitators don't like to be tested – but all of the allegations were based on my information, the information that I had or made up. And I didn’t do it intentionally.
You're thinking it's coming from the other person. But they ask you in a DHS interview who hurt you or where were you hurt, or that kind of stuff, and your mind just fills in those blanks. And so it got to a point where the lawyers were involved, and the guardian at Litem, who was the lawyer that was looking after the children in this case, decided we better find out who's doing the communicating. This is a new technique. We better check before we know how much weight to give the allegations. Because if something's happening at home, that's bad. But if it's facilitator generated, that's also bad, and we need to know that difference. So I was in a personal position of, “Okay, I understand the severity of the situation and the effects this might have on the family, but I'm also told not to test facilitated communication, so what do I do?” And I ended up deciding to go ahead and test it.
Double blinded test of facilitated communication. (Credit Frontline: Prisoners of Silence, Copyright (c) 1993 WGBH Educational Foundation)
So they did double-blind testing, which meant that the information that both of us were shown during the testing was blind to me. I didn't have anything to do with making the protocol, or I didn't know what the activities were gonna be. And the short version of the double-blind testing was they did two or three activities. But this is the example that's most known to people. She was shown a picture and I was shown a picture, and sometimes, they were the same and sometimes, they were different. And I didn't know which; I was blinded to it. And all of the answers were based on photographs that I had seen and not what she had seen. And during that activity, I figured out what was going on.
the facilitator is shown a sandwich. (Credit Frontline: Prisoners of Silence, Copyright (c) 1993 WGBH Educational Foundation)
And I started noticing in my own head I wonder what picture she did get, was it the same or different from mine? And I call these breakthrough moments where I was all of a sudden aware that the communications were maybe not what I thought they were. And that helped me, later on, to pick apart what could be happening from a facilitator's point of view.
The autistic child is shown a boat. (Credit Frontline: Prisoners of Silence, Copyright (c) 1993 WGBH Educational Foundation)
So based on that test, there were like three or four different activities, and all of the activities were based on information I had. So they were either based on guesses, or the answers were gibberish or based on information that I had, and since that point, there have been many studies that came after mine or around that same time. This was in 1992.
The response through FC has the child saying their image was of a sandwich. (Credit Frontline: Prisoners of Silence, Copyright (c) 1993 WGBH Educational Foundation)
So remember, in the United States, facilitated communication was only two years old. And the studies were just coming out, and the studies that happened around that same time happened the same way that mine did. So, one of the first in the United States was from a centre called the OD Hex Center in New York.
Their facilitators were trained directly by Biklen at Syracuse University. And they didn't have any false allegations of abuse, but they wanted to know what was going on with their clients. I think they had seven facilitators, and they matched the best facilitators with the most successful students to have the best results going in and coming out of the testing. They wanted to give everybody an opportunity to show that this worked. And the same thing happened to them. All of the information that came out during those tests were based on what the facilitator saw and not what the clients saw. And this has happened over and over and over and over.
There's never been any study that the facilitator is blinded, which shows that facilitated communication works. It's very rare to say 100% failure rate, but this is one of those cases. The proponents have testing that they claim proves facilitated communication. But the facilitator is always part of the testing process.
Abhijit: That must have been very traumatic for you, though when you realize that you have been deceiving yourself as well as everybody around you, ... you must have been shaken to the core with that.
Janyce Boynton: It was very traumatic and part of the reason why I do some of the work that I do now is to provide a support network for people. But at that time, there weren't very many people in my situation that understood. Fortunately, the scientists, who are demonized in FC workshops, were the ones that helped me understand the situation, and I'm friends with some of them still. And they still answer my questions.
But it was traumatic, and it still actually gets me. I just saw Jason Travers, a professor who just did a workshop on facilitated communication, he showed the clip from my story on Frontlines, Prisoners of Silence, which came out in 1993, and they show some of the messages that came out through the DHS interview – the accusations against the family. And I just started crying. It's very traumatic. Even 30 years later, it's so sad. It's not sad that people get caught up in it, because I think that they really want to. That it comes from wanting to help out. But it's sad that the universities are still promoting this even though they know that this massive amount of research is out there disproving facilitated communication, and they still don't care. They still promote it. And that drives me to speak out about it even though it started from a deeply personal place. But the other thing that was happening is, because of my willingness to speak out against facilitated communication fairly early on, I kept getting reporters that would call me and say "we're going to talk about your story, whether you provide us with information or not, with a comment or not."
And I was like, “Okay, if my name is gonna be involved with this thing, I better learn about facilitated communication and why it doesn't work.”
But what is the science behind it? What is the language? What are the reasons why it doesn't work? And what about unexpected literacy skills? Can that happen? So it sent me on a journey of learning.
Abhijit: That is quite a journey to get to be on. It reminds me of programs that I've watched with James Randy, where he's trying to expose, say, fortune tellers or other people who claim to have supernatural powers. And FC is, of course, not supernatural in any way, but they go through a very similar process as the fortune tellers and palm readers because of this bias going in, which then gets confirmed every time you get a hit. And forget all the misses. And, of course, all the people coming to you are probably believers as well, counting all the hits and forgetting all the misses. They can create entire careers which are based on this bias.
Of course, there are people who know very well that they don't have any supernatural powers, that they don't possess any such skill to tell a person's future or contact the dead or anything of that sort. But at the same time, they carry it on because this not only gives them validation, but they get a lot of money from performing these acts.
Do you think there are people in the facilitated communications field who are doing this knowing that they are not only exploiting people who are unable to protect themselves from it but also exploiting their families, their friends and their fellow students, et cetera? Do you think there are people who are purposefully doing this to deceive everyone just for a living?
Janyce Boynton: That's a tricky question. Yes, I do. I think the whole movement not to test facilitated communication is based on keeping facilitated communication alive. I just read a book called Strange Son by Portia Iverson. And Portia Iverson was responsible for bringing one of the leaders of what’s now-called Rapid Prompting Method.
But she started in India, and she (Portia) sponsored her to come to the United States because this facilitated communication seemed to be working with her son, who was profoundly autistic.
Abhijit: you're talking about Soma Mukhopadhyay?
Soma Mukhopadhyay and her son Tito (Credit 60 Minutes II “Miracle Worker”)
Janyce Boynton: Yes, I am. So she knew about facilitated communication. So what Soma has done is she has invented a new form where the facilitator holds a board in the air and the person who's being facilitated points. They say it's without physical contact, but that's questionable.
But, to an onlooker, it looks like the person is pointing by themselves to the letter board rather than having somebody hold them at the wrist. I'm not sure exactly when the testing took place, but, Soma's husband realized what she was doing, facilitated communication with their son and confronted her about it.
And she got mad and continued to use it. And so he took Tito – their son – to lunch. And then, when they got back from lunch, and they were by themselves, Soma wasn't with them, they asked questions about what happened at lunch, and he couldn't answer what happened. So that was a blind test.
If Soma didn't know the answer, then communication wasn't available. And so she started this technique off. She calls it " Test then teach", where she would read a little paragraph, and then the person would answer questions about it. But she's the one that's facilitating, so she knows both the answers and the questions that are being asked.
A couple of years later, Portia was trying to get all these specialists in the United States to see their point that Tito was this genius. All of a sudden, with facilitated communication, he supposedly had an IQ of 185! They were trying to get him tested so that the rapid prompting method could be mainstreamed.
When Soma left the room for a minute, one of the assistants read Tito a paragraph that she was not aware of. And then when she came in, she came back in, they asked her questions, but he couldn't answer them. So that's two blind tests at two different times. And the FC communication failed both times, but she didn't stop there.
Soma Mukhopadhyay sitting with her son. (Credit 60 Minutes II “Miracle Worker”)
She continued to use it. She started making these rationalisations so she could only answer questions about facts and not about personal experiences, which doesn't make any sense. It doesn't make any sense that he couldn't tell them what he had for lunch, but he could talk about the Gaza Strip.
I've got a couple of reviews coming out on the book. I couldn't stop at just one. The whole thing is about rationalisation and wanting it to work. In Portia Iverson's case, she's the one that sort of egged Soma on and got funding so she could stay in the United States.
She had a profoundly autistic son and had trouble accepting that diagnosis. She didn't want that for her son. And so she wanted him to be able to communicate. I don't think FC is a communication technique. I think it's a coping strategy primarily for the facilitators.
Soma working with another child (Credit 60 Minutes II “Miracle Worker”)
And most a lot of the facilitators are parents of children with profound autism, and they want their child to say, “I love mom and dad”. And now, in 30 years, some people are graduating from college using facilitated communication as their primary form of communication. So that sets the bar pretty high.
Then, I read a newspaper article, I think it was from last year. There was a 14-year-old in Florida that wants to study internal medicine at Harvard University using facilitated communication. Now I don't know how that's going to work. I don't know the logistics, but people are taking this seriously.
They're mainstream.
Abhijit: The facilitator would definitely be able to become a doctor afterwards.
Janyce Boynton: Yeah. The thing about facilitated communication is, a lot of times, the clients are not even looking at the board. You don't even know if they know a letter or how to spell a word.
You mean there's they don't even there's no test for that, and they have people facilitating, and they're looking away, like beyond peripheral vision. And they're typing, and the facilitators accept that as a real legitimate typed-out message.
Abhijit: Yeah. In your presentation, I saw there was, I think there was one child who had their eyes closed completely. They weren't even looking at the board. And it's heartbreaking to see. But to be the devil's advocate, some might say that why not do this? Even if it is in pretence, it gives people hope.
I don't know honestly who would think that, but I'm trying to put myself into the position of someone with biases who, it says that one way or the other there. This might be a way to coax a nonverbal autistic person to develop speaking skills. Maybe at some stage, it is them who is talking, even though it has been refuted scientifically.
What would you say to people like that?
Janyce Boynton: Yeah, I would say that the problem with facilitated communication is that the facilitator, it builds dependency on the facilitator. So there's no point in facilitated communication, even the ones they claim are quote-unquote independent.
There are small cues happening between the facilitator and the person being facilitated. So if you remove the facilitator from that setting, even if the person has been using facilitated communication for a number of years now, some of them going on 25 or 30 years, their ability to type drastically reduces when the facilitator isn't in the room.
So the problem is, it's not that like with legitimate augmentative and alternative communication, which is called AAC. There may be some guidance and some queuing at a certain stage, but that is removed. And so, if you take the assistant and have them leave the room, the person using augmentative and alternative communication could still produce written language or point to pictures or however the system is set up.
But that doesn't happen with facilitated communication. It only works when the facilitator is around. I think that some parents might find comfort in that. But what's happening also is that there are journal articles coming out, and there are books and movies coming out that are supposedly representing the feelings and thoughts of people with autism, but it's all based on facilitated communication. So it would be nice if those were the person's thoughts, but the likelihood that it's being controlled, at least to some degree, by the facilitator is pretty high when you're using facilitated communication
Abhijit: of course, and these organizations that are training people, there are established organizations that are doing such things.
Janyce Boynton: Yes.
Abhijit: So why are they continuing, even if it's been established that this is a practice that is not only useless but also something that is deceptive and potentially harmful? Why are they still around?
Janyce Boynton: Because they've been able to convince the administration that it works, or the marketing is that it works. And many people who speak out against FC are accused of being ableist or against individuals with disabilities, which is also a lot of baloney.
But it's a feel-good, politically correct position to say that FC works and you allow these individuals to reach their full potential.
Abhijit: That is incredible. So is there anything like that? I also wanted to learn more about autism per se as an affliction, disorder, or disability?
Is do you have expertise in that field to an extent?
Janyce Boynton: It's not my field, but I can answer some questions about it that I have [discussed with] people who are in that field, who I've been working with, so I have a limited understanding. It's quite a big political debate about autism and the spectrum, and who's representing who. And there's a section of the autism spectrum where people are severely disabled and they tend to be non-verbal. They tend to have aggressive behaviours and impulsivity. So they might bang their head and run out into the street without looking. They might grab food off people's plates, that kind of thing. And those are the people who are susceptible to facilitated communication. And it goes from severe to mild forms of autism. And so the more verbal you are, the less likely that you're gonna be a candidate for facilitating communication. Although some people do have the verbal ability, limited verbal abilities, are being subjected to FC. And in those cases there, the facilitators were trained not to give a lot of stock to their verbal behaviour, but focus on the typed written-out behaviour.
And there is something called echolalia, the effects of which are debatable. With this, somebody might repeat a phrase they've heard or that kind of thing. But you have to figure out what the meaningful messages are and what the echolalic messages are. And usually, it's pretty straightforward. There's a movie called The Reason I Jump. It's a pretty popular movie and it's based on a book that was written through facilitated communication.
So the narration in that movie is using facilitated words. There's a segment in that movie where somebody's being facilitated. She's saying, "No more! Can we go home?" And her behaviour is a little bit agitated, but the mom is facilitating with her and she’s typing out something completely different. I forgot exact the exact words, but, the mom’s saying something like, “all of a sudden, we could communicate together”. But the individual being facilitated is saying, "No more! can we go home? I don't wanna do this". And in that case I would say that her words are pretty meaningful because they matched her nonverbal behaviour as well.
An autistic child is looking away while her facilitator is guiding her hand to spell. (Credit Frontline: Prisoners of Silence, Copyright (c) 1993 WGBH Educational Foundation)
Abhijit: Do we understand at this stage what part of the brain is affected by autism, which causes the symptoms of not speaking or behaving appropriately?
Or do we understand what's going on in the person's mind, and is there any way that we have to truly understand what they're thinking in a genuine scientific way?
Janyce Boynton: I don't know that I know the answer to that completely. I know that it's a neurological disorder and part of autism. Comes with communication difficulties.
I'm not the best person to answer that specific question. I think they do have clues. They have clues about, for example, to learn language early on, there's something called joint attention. If I'm gonna teach you “this is a cup”, you have to look at it when I'm making those noises to understand that these are the sounds that I'm making: “a cup”, and this is the thing that those sounds are associated with. It's not a pen, it's not a dog, it's a cup. Anybody who's learning a language has to associate, to make that eye contact with that thing, and know that you’re the person who's teaching you. Something important's happening. I need to pay attention to that.
And with people with profound autism, their joint attention skills are greatly reduced. So they miss those opportunities to learn language. So that's one example. And that would also interfere with learning reading and written language skills.
Abhijit: The reason why I ask is that I also have friends who have an autistic son. I know that there are lots of parents who do have autistic children, I'm just trying to find out if there is a legitimate way to understand and communicate with autistic people in a way that is true and meaningful.
Janyce Boynton: The most effective and evidence-based communication technique or learning technique is called Applied Behaviour Analysis. And that's where they break things down into small steps. It's very methodical, but it takes a long time.
And unlike facilitated communication, where some of the facilitators claim a 100% success rate, with ABA, there is not always that high of a success rate. So even somebody who works with ABA but has profound autism, it may or may not have the degree of success as any of the others techniques.
That's really the one that's evidence-based and long-term that works.
Abhijit: I see. So what other are the clues and the cues? You mentioned this in the beginning, but I just want to have this reiterated. If parents are approached with facilitated communication, or any of the other names it's called by, how can they detect that this is facilitated communication, that it's not real, and that they need to go elsewhere to find help for their child?
Janyce Boynton: It's evolved. They've changed the name on purpose. I have an article that documents that they've changed the name. I don't know why they would tell anybody in public, but they did, where they've changed from Facilitated Communication to Supported Typing to quote-unquote "Fly Under the Radars". Syracuse University used to have the Facilitated Communication Institute. It's going through a couple of different names. So Supported Typing to Communicate, Informative Pointing, Rapid Prompting Method, Spelling to Communicate. We've got a list on our website. There are 20 names. It keeps changing. Because the American Speech Language Hearing Association, since 1994, have had an opposition statement against Facilitated Communication. So now there are even more names because they're like, "Oh, we're not using Rapid Prompting Method, we're using Motor Planing Communication, something or other". They're probably making up more names for this technique as I speak. So some of the cues that I recommend is that people focus on the facilitator and notice the interference that the facilitator has over the communication technique.
Now, if they're using a legitimate form of augmentative and alternative communication, the assistant might say, I'm using hand-over-hand with this person, but only for a week or two. Because I want them to understand like the motion of a letter,” or they'll be upfront about what they're doing.
Soma sitting with the child as they point to a card with letters on it. (Credit 60 Minutes II “Miracle Worker”)
But facilitators tend to be a little bit more cagey about what they're doing. One thing about holding a board in the air is that the board moves inadvertently. And the facilitator probably won't notice that it's moving because they're interacting with the client. And so the person's trying to point, and the facilitator says, “I need an ABC”. Say I want them to point to the C, and my finger’s somewhere else. The facilitator might move that board over a little bit just so that person can touch that C. The other thing to think about this is the facilitator might nod their head, might shift in their chair, to be more present. They might give hand signals. They touch, go up or down or over, they might change their vocal inflexions. So at the end of a sentence, they might go down, or, at the beginning of the sentence, if they want the person to continue spelling out a word, their voice might go up. When they're holding onto their wrist, shoulder, or elbow, sometimes they'll tug on their shirt sleeve, or the tricky facilitators will tug down by their waist so that it's out of the camera frame. If you're watching something on a video of a successful facilitated communication, the camera's up here, and the facilitator’s hand is down in a sneaky place where they're tugging on their shirt.
Abhijit: I saw in a couple of videos that she doesn't seem to be holding his hand. She doesn't seem to be touching him in any way, but he's still whacking away at the letters. What's going on there? That's probably it, because it looked very convincing.
Janyce Boynton: Yep. Another thing is, the cues can be very small. I was watching Soma, for example. I was watching some of her early videos, and her cues are huge. Now all she has to do is small gestures. And people are like, she's moving her hand a little bit, but there's no way that he could be typing.
And he's following her cues. Because the other thing that happened with Soma that I learned through this book is she only paid attention to him when he was facilitating. So she only reinforced those behaviours. And he was big too. He was violent, and he would go into people's homes and pull things off shelves. He choked Portia Iverson, and his mom had to pull him off. And he wasn't learning other behaviours except when he was facilitating with her. That's the only time she reinforced them. And you talked about some of the dangers. Some of the dangers. Somebody with profound autism may always be impulsive, but they still need to be taught that you can't just choke somebody. That's not right.
Abhijit: And to think she's doing that to her son and maybe even knowingly!
Janyce Boynton: This is an idea I've had. I've been reading pro-FC books, as frustrating as that can be. It's taught me quite a lot about facilitator thinking. And there's two cases that come to mind.
One, in her case, and this is according to Portia Iverson, it's secondhand. But she (Soma) came from India, and she came from a community that was afraid of Tito's behaviours. And then, the other case was in The Reason I Jump. They were in Sierra Leone, where those parents talked about the child being called a devil. And they were being called witches because of the strange behaviours and the sounds, and he wasn't verbalising. And I [started] thinking about FC as a coping strategy in those situations, if somebody could type out poetry or write a book, or there may be some survival component to make people look a little bit more neurotypical. Yeah, he's got strange behaviours. Still, he can talk about the news, and he can talk about politics or religion or do high math skills or that kind of thing.
So part of that coping strategy may also be how we deal with people with profound autism. I still don't think it's right, but I think that the origins of some of this may have come out of a need to have people look a little bit more neurotypical than they are in real life.
Abhijit: That is understandable, though. That is understandable. Thank you so much for bringing attention to this very problematic practice. Are you doing any speaking appointments or are you how are you spreading the word about this?
Janyce Boynton: Yeah, occasionally. I speak to groups as the Skepti-Cal asked me to speak a little. And sometimes, classroom teachers will ask me to speak about facilitated communication. The most I'm doing that takes most of my time is I'm a co-founder of a website called facilitatedcommunication.org, and there we've listed controlled studies and systematic reviews, and organizations with opposition statements. We also have pro-FC articles that we've critiqued. There are two of us regularly, and then there are others that contribute. We have a blog that we put out every Wednesday.
We usually have some information about FC. There was just a court case in Pennsylvania where the parents wanted to get Spelling to Communicate into the school system, and the court turned them down. And what I thought was interesting about that court case was that the parents wanted to provide supplemental information to the court to show that Spelling to Communicate worked, but they inadvertently did a double-blind test. The student and facilitator were doing some activity, and it wasn't going very well. So the facilitator asked for the answer key to the activity they were doing. And once they got the answer key, all of a sudden, all the answers were correct.
So the judge was like, I don't think this works with this person. So they lost their lawsuit. But I think they're gonna appeal it. So anyway, occasionally, we get people who get false allegations of abuse. And over the last couple of years, I've had people contact me about that, and we try to hook them up. So I have a bunch of experts that help me out, and I'll send people to the right person or hopefully somebody that can help them out. So a lot of my work goes towards that educating people.
Abhijit: Wonderful. And if any of the viewers have any questions or maybe if they've encountered some form of facilitated communication, where can they reach you? Twitter? Email address? Something that you'd be comfortable sharing?
Janyce Boynton: Yeah the website has an email there. That's probably the best place to make sure that I get the message. Sometimes on social media, I don't always see things that go through my feed. Facilitatedcommunication.org, and then my email on that is contact1@facilitatedcommunication.org. If you go right to the website, you can get me right through the website.
I'd love to hear people if people have questions or concerns or, maybe there's a study out there that I haven't seen that proves FC works. I'd love to read that too. I haven't found one yet, but there's always hope that it could work at some point.
Abhijit: Absolutely. If it is even plausible that it would.
Janyce Boynton: I don't think it is. Yeah. I don't personally think it is.
Abhijit: It's probably good to keep that 1% open to something that might flip us over, and that is what makes good sceptics.
Janyce Boynton: Yeah. There's a part of me that would love for it to work, but it's just like the evidence is so clear about what's happening, it's like physically, it can't work. You can't have a system that builds dependency on another person and then thinks it's independent.
So just the whole structure of FC, sorry, it can't work. It just can't. As much as people hope that it will, it just can't work.
Abhijit: But it is undoubtedly a very attractive prospect. If it did work, it would be an amazing thing, which is why people gravitate towards it. Because parents, I'm sure, would love for their child to finally have a voice.
And it would be phenomenal if I was in that position. I would do anything, move heaven and earth to be able to speak to my child. But it's not that easy, and it's not that simple. T
Thank you very much for joining me on Rationable. I'm certainly gonna have you on again if I get enough questions.
I'll put all the links to either your website to your talk at SkeptiCal and the other video link you shared with me about a two-hour presentation, which goes through facilitated communication and its problems which I also found very illuminating. I haven't gone through the whole thing yet.
Janyce Boynton: It's a long presentation by Jason Travers, he goes through some of the history and some of the reasons why it doesn’t work. He is an autism specialist. So, it's always good to get varying points of view.
Abhijit: Absolutely. Maybe I'll have him on board to tell us more about what autism is as a neurological disorder and maybe get some insight into that as well.
Thank you so much again. Thank you all for watching and being here on Rationable to watch the video. Thank you, Janyce, for joining us. And if you have any questions, drop them in the comments, and I'll put all the details of how to get in touch with Janyce in the references below.
Resources and Further Reading
https://www.facilitatedcommunication.org/ https://www.tandfonline.com/doi/abs/10.1080/17489539.2012.674680
https://pubmed.ncbi.nlm.nih.gov/8441353/ https://archive.org/details/PrisonersofSilence
https://www.facilitatedcommunication.org/blog/a-magician-cannot-dispute-fc-or-can-he
https://www.youtube.com/watch?v=pXAxkqsCbvk
https://www.facilitatedcommunication.org/blog/why-does-joint-attention-look-atypical-in-autismand-does-it-matter
https://www.facilitatedcommunication.org/blog/what-is-joint-attention-and-how-does-it-relate-to-fc
https://www.facilitatedcommunication.org/blog/is-eye-contact-really-overrated
https://www.facilitatedcommunication.org/blog/from-eye-tracking-to-eegsanything-but-a-simple-message-passing-test
https://www.facilitatedcommunication.org/blog/aba-vs-fc-what-aba-knows-about-autism-instructional-needs-and-the-harmful-effects-of-inadvertent-cues
https://www.amazon.com/Cutting-Edge-Language-Literacy-Students-Spectrum/dp/1799894436/ref=sr_1_1?crid=6OXJXUR4XYNB&keywords=cutting+edge+language+and+literacy+tools&qid=1664480183&qu=eyJxc2MiOiItMC4wMSIsInFzYSI6IjAuMDAiLCJxc3AiOiIwLjAwIn0%3D&s=books&sprefix=cutting+edge+language%2Cstripbooks%2C80&sr=1-1&ufe=app_do%3Aamzn1.fos.f5122f16-c3e8-4386-bf32-63e904010ad0
https://www.amazon.com/Students-Autism-language-literacy-academic/dp/1915261376/?_encoding=UTF8&pd_rd_w=tnlI3&content-id=amzn1.sym.8cf3b8ef-6a74-45dc-9f0d-6409eb523603&pf_rd_p=8cf3b8ef-6a74-45dc-9f0d-6409eb523603&pf_rd_r=6070R8PSF9PW2GVV3Z72&pd_rd_wg=OGZeX&pd_rd_r=7691ace2-a9d0-49b5-843c-66227efa3ab5&ref_=pd_gw_ci_mcx_mi