Episode Transcript
[00:00:00] Speaker A: Hello and welcome to the Trauma Informed slp.
I am Kim Neely and this is a podcast where we learn to promote safety and empowerment in everyone we know, including ourselves.
Hello everyone. Welcome back. So excited to finally bring this interview to you all.
I love learned a lot of hard lessons about editing, interviewing for, for podcasting and.
But you know, it's done here it is. Might not be perfect, but hopefully listenable because lots of really good information in this episode and actually series of episodes actually. Janice and I, we chatted, I recorded for nearly three hours with her and honestly so much of it was so good I didn't actually want to cut out hardly anything.
So I actually decided to split this up into two main episodes. So this is just the first one. It's going to give you lots of good background into Janyce and her experience with facilitated communication and things like that.
And then the second one, that will be released hopefully in a week, maybe two. I do have a little conference thing to prepare for, so might be two, but let's hope for one personal goal for one, but maybe two. You know, we're gonna plan the ADHD brain way of like let's give ourselves a hard deadline, but then also tell everybody it's actually a soft deadline because it probably actually is.
That's called accommodations and strategizing. Okay. Anyway, so the second episode will go more into detail with some of these things and kind of get into broader like ethical implications and such. And then there actually is a segment got into near the end of our discussion that I'm actually going to put on my new Patreon page as bonus content.
Yes, that is right. This is a little plug, little announcement. You can fast forward through this if you wish. But my intent with the Patreon is to be a supportive community of mostly SLPs. Probably, I'm gonna guess as an SLP, I'm probably gonna attract a fair number of SLPs. But really, any helping professional out there, teachers, you know, educators in general, speech language pathologist, occupational therapist, physical therapist or mental health specialist, any of you guys out there, or nurses, any of you guys who want a community, I'm hoping to create at least a little bit more of a community.
[00:02:41] Oh, right.
[00:02:42] And also students in any of these professions as well. I'm hoping to really create a great community, a supportive community where we can get a little more validation and a little more normalization for all the struggles we're having throughout the day, whether it's our work related stuff or maybe just the world in general and things that are just really Hitting us right now because the world is pretty tough.
So it's going to be a space, there's going to be chats open. I already have a few chat threads that I started just off the top of my head as spaces to go to like vent or whatnot. But I also want to start out with doing maybe some zoom calls or some live chats, you know, Q and A type stuff where we can all start to bounce ideas off of each other.
We can bring issues we have with maybe any sort of toxicity in the workplace or something like that.
Just a place to go because the. The world's really hard. Obviously. Don't have to tell anybody that. We can definitely tell. It's very hard right now. And the news cycles are really hidden. Phew. You know, I always love that Fred Rogers quote, you know, where he said his mother said to always look for the helpers during troubled times. But at the same time when you are a helper, who's looking after you. Right. We need to kind of look after each other, I think. So that's the idea here. And also as a place just to help with, you know, in the trauma literature, one of the most effective ways of combating chronic stress and traumatic stress and things like this is creating supportive community and having access to a supportive community. So a safe, supportive community. So I'm hoping that's what the Patreon will be. I have a link in the show notes. Take a look. I have a promotion going on. You can get three months for free with that link there or it's free through March 3rd at the moment, but I can always extend that a little bit. If you, if you are in any sort of financial trouble or if any of the tears would be a bit of a stress for you, let me know. I could definitely hook you up because I don't want this to be inaccessible or too much of a strain. So before you click over to that link, I guess you could do it while you're listening, but you know, beforehand. Go ahead and give this episode a listen because I think this is really important stuff and I will be going into a little bit more of a background on what this episode will be about and a little bit more into Janice with Now.
I am very excited for this new episode here. This is my first official interview with somebody with a guest and I'm so excited. And I had an absolutely fantastic conversation with Janyce Boynton and she is an artist, educator and advocate for evidence based practices in the field of communication sciences and disorders.
Her story is she was a former facilitator using facilitated communication back in the 1990s here in the United States and she was featured on Frontline's Prisoners of Silence.
To date, she is one of the few facilitators worldwide to publicly acknowledge her role in producing facilitated communicated messages and speak out against its use.
She left teaching to pursue her artwork, but has continued to be active in educating people about the dangers of facilitated communication or FC as you'll hear her reference it as, and other facilitator influenced in tech techniques, including the newer ones like the Spell to Communicate and rapid prompting method and all the other various ones that are out there that are cropping up these days.
She was the recipient of the 2023 James Randi Education Foundation Award for her work in the field of skepticism.
And I was so excited to get her on my podcast because I did that episode which I believe I just re released for you guys, actually on my response to the telepathy tapes and in that I talked a lot about, at least on the audio podcast. That episode's different than the one that was on YouTube. I do have a YouTube video on that as well, which I went way more into AAC and questioning the more facilitated type of techniques that are being used.
But you know, I wanted to make a response to that because, well, it is, I believe their second season came out, I think, because it started cropping up again on SLP subreddits and other various places where people are talking about it. And back when I produced that initial episode, Janice actually reached out to me on email and ended up adding, I believe the YouTube episode to facilitated communication.org which is the website that she runs with a few other people.
It sounds like it promotes it, but it does not. That's the intelligence of grabbing that website address. And we had a great back and forth on, on email about the dangers and the issue with all of this.
And I've been wanting to get into interviewing more with people. And so I thought she might be a wonderful guest to have. As I saw this topic come back up from the trauma informed perspective, I wanted to take more of a what happened to them approach in the sense of why do people get into this? What. What are the promises that they're given? What is the psychology around people who use these techniques or go to use these techniques or go to the trainings and learn these techniques, like what is the messaging and what is the psychology around that? And I thought Janice would be a wonderful person to talk to as well, in the sense that she was kind of on the Front line essentially in the 90s, at least in the United States. I know in Australia it happened a little prior, but here in the United States, she was essentially on the front lines of the court ordered studies that debunked it.
And through she'll talk about her experiences with those tests and how she came to realize that she was actually authoring the messages and it was not actually the student she was working with like she thought.
And I just thought, what a fascinating approach because I do truly believe that if we take more of the approach of having some level of understanding and compassion for the people who want to grab hold of the promises of these techniques. Right.
Then I think hopefully we can do a more effective job of advocating against it without alienating the people who, you know. These techniques promise to solve a lot of very genuine concerns. Right.
And so I think it's fair to take a peek behind the curtain essentially is sort of what I wanted to do with this. And, and so I hope you enjoy it. It was just an absolutely wonderful, completely fascinating interview. I learned so much doing this. There was so much going on behind the scenes and trainings and what they're teaching and, and how they're actually co opting certain terms, which is really important. I think that's really critical to know that some for, for, for proponents of these techniques, when they say independent communication and when they say presumed competence, they actually mean different things than what those of us outside of this think we're using those terms for.
So thank you all so much for listening and I hope you enjoy this episode.
Thank you so much for being here.
My first official guest. Yay.
[00:10:30] Speaker B: So excited. Thank you for having me. I appreciate that.
[00:10:33] Speaker A: Talking about kind of a tough topic, but you know, I just want to get your perspective because I think you have great perspectives and obviously a lot of experience out there. Yeah.
[00:10:43] Speaker B: Who knew I'd still be talking about FC 30 years after it was debunked?
[00:10:47] Speaker A: I know. Oh my God. The, the cycle of history, it's got to be a little, little tough to see it repeating over and over.
[00:10:56] Speaker B: Well, it never really went away. It kind of went underground for a while and then came back, so.
[00:11:00] Speaker A: Ah, that makes sense. Yeah. Little resurgence. Yeah. Yeah.
I guess there will always be some niche things that will never quite go away in society when it comes to certain things.
So could you go ahead and introduce a little bit about yourself?
[00:11:15] Speaker B: Yeah, well, I'll start with I'm not teaching anymore. I'm an artist now. But when I got into facilitated communication, I was a speech language clinician. In the public schools, and a student moved into the district that was already using facilitated communication. So this was 1991 or 92. I forget whether it was. I think it was 92, 93 that I was involved with it.
And so she came with a facilitator. And because I was a speech language person on staff, we all, as a team, decided that I would kind of explore facilitated communication. And none of us really knew it was brand new.
Bicklin introduced it to the United States in 1991. So I found out afterwards that two of the people who were promoting FC, primarily in Maine, were at the University of Maine, and that's who I took workshops with. So at the time, Maine, Vermont, and New York were really big into facilitated communication. I only learned this much later, but at the time, it actually makes sense that it would kind of like, start seeping into the school system.
And so that's how I got involved with it. I didn't.
It seemed easy enough. You know, I kind of learned with the. Along with the person who came in with my student. She was an ed tech, but she had taken the training at the University of Maine, which to me gave it some credibility, even though it was this new revolutionary thing at the time.
[00:13:06] Speaker A: Real briefly, were you a master's trained speech language pathologist, or were you more like an aide or an assistant?
[00:13:11] Speaker B: No, at the time, the qualifications hadn't changed yet. So I have a dual certification. It's a bachelor's degree in elementary education and speech language as a speech language clinician. They made a distinction between clinicians and pathologists.
So if you had. And at the time, this was early 90s at the time, you could teach in the public schools as a speech language person without a master's degree. And then later, like four or five years later, it changed, you know, by 19. I left teaching in 1998, and that's about the time that the certifications were also changing. You know, it was all evolving.
[00:14:02] Speaker A: I see.
[00:14:03] Speaker B: So, yeah, got it.
[00:14:04] Speaker A: Yeah, got it. Okay.
[00:14:05] Speaker B: So it probably would have helped if I had had a master's degree, because I.
How do I say this?
I was good at what I knew, but I didn't have the training to deal with autism as, like, I probably had, like, maybe a semester or two about language development in people with autism and others.
My training was good for what it was. The program that I went through was fine, you know, but it wasn't enough.
[00:14:43] Speaker A: Yeah.
[00:14:44] Speaker B: You know, and I think. I think it was a good thing that eventually they changed the Master's qualifications and ASHA certification. Also, you didn't have to have an ASHA certification to teach in the public schools back then as a speech clinician.
So education, I could have used more education, you know, but this is all looking back, you know, it's easy in hindsight, it's easy to say, oh, if I had done this or I zigged instead of zagged and it would have been fine. But.
[00:15:15] Speaker A: Yeah, and I also don't know, I mean, obviously I, I wasn't practicing back then.
I was a student at the time, but like in. I think I was in starting middle school around that time, I believe. Oh yeah, sorry. I don't know.
[00:15:30] Speaker B: Just a young.
[00:15:30] Speaker A: Yeah, just a little young comparatively. But yeah, I don't know how much autism really was part of the training. Maybe some other like older SLPs out there who were training around that time could really comment on it or send me messages about it, if you guys know out there. Yeah, I'd be interested because I, I wouldn' imagine the diagnosis would be as common back then either, like, as it is now.
[00:15:53] Speaker B: No, I did have a professor that worked with autistic children, but. And I, I think I took maybe a year or two with him in different classes, but I don't remember that. It was the. We were mostly focusing on like speech sound development and a little bit less on language development.
Not that I didn't have any, but yeah, I just think things were evolving. They were still pretty evolving.
And also inclusion and all that kind of stuff was also evolving at the same time, which is I think in part why FC sort of kind of took hold because it was part of that whole movement.
Computers were just starting, but they were super expensive and so. But FC was really easy. All you needed, it really was a photocopy of a letterboard and you could start using facilitated communication. So. And my budget frankly was pretty much zero when I was, you know, and, and so I think it was it. And it was sort of marketed, right, as something that was really easy to implement. Anybody could do it. You know, you just have to take a training. But back then it was just a two day training. Now they've changed.
With the false allegations of abuse cases that happened in the mid-1990s, including the one I was involved with, they changed, they quote, unquote, changed the guidelines.
So they're like, well, no, you have to keep coming back. You have to take more than a two day training. You have to just keep coming back.
But that's not how it was back then. We took a Two day workshop and we were good to go, you know.
[00:17:47] Speaker A: Oh, I see. Huh. Is it like they still do a two day workshop and then they have like continuing education type stuff now? Is that how they do it?
[00:17:54] Speaker B: Yeah. You have to keep coming. Yeah, you have to keep. You're not. I see you're not officially considered a facilitator after the two day training, but you can start working with people and you have to keep checking in with people at Syracuse or wherever. I mean, that's also hard to tell because there's so many different type of quote unquote types of facilitated communication now. And everybody's got their little spin on it, but the Syracuse based facilitators, after the mid-1990s, like 1995 and beyond that, had to keep going back to Syracuse every year or maybe even twice a year to get recertified or something, you know, like there's no certification for it.
[00:18:46] Speaker A: Yeah, right.
[00:18:47] Speaker B: But like, but to, for, for Syracuse people to say that you were a master trainer or master facilitator or whatever, you had to keep going back.
[00:18:57] Speaker A: Oh, interesting.
[00:18:58] Speaker B: Every year or every or twice a year, spring and fall for a training.
[00:19:03] Speaker A: Interesting. Okay.
[00:19:05] Speaker B: But that, none of that was in place when I was involved with that.
[00:19:08] Speaker A: Right.
[00:19:08] Speaker B: So it's much different. I mean, you know, the people, like critics of me now try to compare it to now, but the times are much different back then. Like FC was brand new and they didn't have all these so called regulations and guidelines and things which to me are pretty meaningless, but just the same, they're like, oh, you only took a two day workshop and you're a facilitator. I'm like, yeah, that's what they told us would, you know, like that's how.
[00:19:35] Speaker A: It worked back then.
[00:19:36] Speaker B: Yeah. I have CEUs for it.
We're no talk about, you know, like, you have to come back for more training.
Yeah. Wow.
[00:19:47] Speaker A: And I was just saying just to get the terminology in my own head a little more clear as we talk. So when you say facilitated communication or fc, do you think of that as like the umbrella term for all the other new things that have sort of branched off from that or do you feel like there's a little bit of a distinction?
[00:20:04] Speaker B: That's a really good question. Yeah. Well, originally FC meant touch based fc. So you held onto the person's wrist or shoulder or elbow or whatever with a light touch and supported them while they touched letters on a letterboard.
That's what most people see as facilitated communication.
And as the testing came in, like in 1995. By 1995, Asha had come out with an opposition statement and the American Psychological association had come out with opposition statements to facilitated communication based on the testing that was coming out. Oh, okay, so the false allegations of abuse, the authorship testing had started.
I'm just going on a little rampage and then I'll come back to FC as an umbrella term.
[00:20:58] Speaker A: Go right ahead.
[00:21:01] Speaker B: FC had started to receive criticisms even before it came to the United States.
Australia was already questioning it.
So Bicklin brought it over to the United States and then so the United had to catch up.
So the control testing had started around 1992, 93. It was sort of sped up because of the false allegations of abuse cases that were coming out.
But all of the testing wasn't necessarily based on the false allegations of abuse. There were just people who wanted to understand what they were implementing in their programs.
So by 1995, ish 1996, there was a lot of pushback with facilitated communication and concerns about authorship right across the country.
Because there were hundreds by then, there were hundreds of facilitators that had been tested in all of the controlled studies. It's not all of the studies because the facilitated communication people did some studies too, but all of the controlled studies, the studies that separated out the facilitators behaviors with the person being facilitated their behaviors, showed that the facilitators were doing the communicating.
And so instead of responding to that, the FC proponents started developing ways to use facilitated communication that weren't as touch based, focused.
So that's when they started holding the letterboards in the air and having the person hold their finger up independently, hold their finger up towards the letterboard. But they still didn't, they didn't take into consideration facilitator cueing. And there's tons of ways that facilitators cue verbally, physically and visually.
So they can use hand signals, they can move their heads, they can say the sounds that they want the person to like. If you wanted somebody to point to the letter A, they can say, well, your turn.
[00:23:25] Speaker A: Right.
And I think nowadays especially, I mean, I went to my master's in 2012 through 2014, but nowadays when you're in an evaluation, when you're in that like practicum, that clinical stage of training, you learn that like there's so many ways you can accidentally give the answer to a kid when you're evaluating them. Right. With any kind of standardized test.
So similar, right. Similar idea, like all those things still definitely apply if you're doing this type of work. I guess. Yeah.
[00:23:58] Speaker B: Well, and as a facilitator, you're not supposed to look, you're not the part of the guide, part of the guidelines always has been do not test.
So when you put that, put that do not test in there.
Because if you test, then the early FC workshops, and I think it's still there today, they talked a lot about trust.
The person isn't going to facilitate with you unless you build this trust with them.
You have to presume competence, you have to build this trust.
And the people that FC didn't work with everybody, only the special ones that you know, the students trusted you.
Right.
So it's all about trust and don't test. And so facilitators when they're. Or at least in my experience and from what I've read from the literature, you're kind of self conscious when you first start it. So you're going to catch some of your mistakes that you make. Oh, I moved the kid's hand that time, but I won't next time, you know. So you tell these, tell yourself these things. And so the more automatic the movements become, and I was trained in touch base fc, so the more automatic the movements become, the more it feels like the communications are coming from the other person. I can't really.
[00:25:18] Speaker A: I see.
[00:25:18] Speaker B: It's hard to explain. Yeah, like.
[00:25:21] Speaker A: Yeah, I think that does make some sense though. It's like you're.
Because you're consciously trying to keep yourself from prompting them, you feel that you're successfully not prompting them. Basically. It's like you kind of train yourself to think, I'm aware of this, therefore I'm not doing it in a way.
[00:25:39] Speaker B: Yeah, yeah, exactly. And the movements become like they're not resisting, they're just going along with it. So the more there's no or no conscious resistance, the more it feels like it's quote unquote working.
[00:25:53] Speaker A: I see. Is there ever anything built into the training where you would be expected to ask the student or client you're working with, did I get that right? Is that what you wanted or is that what you actually said? No, no double checks like that.
[00:26:09] Speaker B: No double checks and no double checks for comprehension either.
The assumption is that they have intact language and literacy skills, which doesn't make any sense to me anymore, but they have intact language and literacy skills. So you're just providing the support.
They already know this information.
They've got it from the environment or from reading street signs or listening to the radio and you're just providing the emotional and physical support so that they can communicate independently.
[00:26:51] Speaker A: Interesting. I was just thinking, because when I think of trust and communication in the trauma informed sense, but just in general, even as just an slp, communication breakdowns and being able to repair those is kind of an essential part of how we learn how to build relationships and communicate with each other and build that trust. Really. Right. It's like how someone responds. If it's like, no, that's not what I meant. And then they actually give you a chance to re. Explain yourself or something like that.
So I think it's interesting.
I'm gonna.
It seems like that was what those facilitator trainers thought were testing someone is like being like, was that what you meant? Did I get that right?
[00:27:33] Speaker B: Yeah.
[00:27:33] Speaker A: Or, you know, but I think of that as just a natural part of communication when you're getting to know someone in a way. Right. To be like, did you want the grape juice or did you want apple juice? Did I get that right? Right.
[00:27:47] Speaker B: But see, that doesn't work either. That doesn't necessarily work either as a facilitator. And I'll give you an example. And you know, I can't. It was 30 years ago. I don't have my notes, so I don't, I can't tell you exactly what my student and I talked about.
But here's an example. You know, you ask the person, what would you like to. For lunch? There's hamburger and pizza for lunch. And they type out pizza. Right? So that's the facilitated answer is pizza. And then you walk down the hallway and you get to the cafeteria and the person chooses a hamburger.
Well, instead of the facility in the facilitator's head, instead of saying, well, you know, that was, you know, the typed answer was wrong. It's like, oh, good, she changed her mind. She's, you know, she's, she's being thinking independently and she chose hamburger. And she must have just changed her mind from the special ed room to.
[00:28:42] Speaker A: The cafeteria, which is fair, but like, there could still be a double check just to make sure, you know, like.
[00:28:49] Speaker B: But there isn't. That's not, that's not what was built into the training. That's.
[00:28:53] Speaker A: I see.
[00:28:54] Speaker B: You don't. It's not like I've seen like Itran.
I think they call oh, no, E Tran boards where they hold up the letter board and the person. It's more like a eye gaze system. Ah. Where the person looks at a.
The red square and then there's abc and they pick a letter from that and there's constant communication from the assistant and the person who's communicating. So did you pick the red one? And the person gives some sort of. Even if they can't speak, they could still nod their head or they could give an indication.
[00:29:30] Speaker A: Yeah, right.
[00:29:30] Speaker B: Some sort of signal that they meant the A, the red or the red square. And then. Did you mean the A? It looks like you're looking at the A. Did you? And yes. You know, that doesn't happen with fc.
It's more they've touched the letter or you think that they've touched the letter. There's problems with that too.
And that's what they meant.
[00:29:56] Speaker A: That's interesting.
[00:29:57] Speaker B: There isn't that check.
[00:30:00] Speaker A: I can see, I guess, from my perspective, too, thinking of neurodivergent affirming and presuming competence. I can understand how people might think.
It sounds like you're presuming competence, but at the same time, to me, it's almost like you're jumping to a conclusion about somebody and you're thinking that they have mastered communication to the point where they won't maybe make a little error. I guess I think of it like if I'm learning a foreign language, right?
If somebody asks me what I want to eat, I might use the wrong word, even though.
And I just, just got it jumbled in my head. What I. What, what was pizza? What was hamburger? What does that mean? And when I see the objects, I think, oh, I actually want that. I want the hamburger, right?
And then if I'm in a foreign language class, I want my teacher to correct me, right? Like, I want that input of like, oh, you meant this word. Oh. And it's like, okay, great, that'll help me. If I go to the country and I want to chat with people, I want to get myself around. I gotta know I'm using the right words to do it. And so it's an interesting, I guess, sort of a nuanced difference there between, like, presuming, yes, they're competent, they know what they want.
But that doesn't always mean that the teacher shouldn't double check just to make sure that they didn't misunderstand or that they just selected the wrong word or they selected the wrong letter or whatever, you know? So it's very interesting.
[00:31:24] Speaker B: Yeah, that makes sense to me now.
[00:31:26] Speaker A: But yeah, right.
[00:31:27] Speaker B: As a facilitator.
The other thing is the person can be saying yes and typing no.
And so what do you do then?
You're taught to ignore the verbal behavior and just go with the written language with the facilitated message. That's interesting because they have this.
Because verbal language and I'm talking as a facilitator isn't reliable.
[00:31:57] Speaker A: Interesting.
[00:31:58] Speaker B: Only the written typed messages are reliable.
So there's lots of examples in the FC sessions that I've looked at or even in the movies and stuff.
There's a movie, the reason I jump, I'm pretty sure this is an example from that movie where the young woman is sitting on a park bench with her mom and her mom's facilitating with her and she's saying, no more, no more. And the mother's typing out all this stuff, you know, about how their relationship has improved or whatever the message was. You know, it's totally different than what the person is actually verbally saying.
[00:32:38] Speaker A: Interesting.
[00:32:39] Speaker B: The person. When I look at it, the young girl is protesting, she doesn't want to with her behavior and all that is ignored. Only the written, the facilitated spelling is considered valid.
[00:33:00] Speaker A: So it's like presuming competency, but only with the AAC device, basically, versus like multimodality communication and using body language and voice. That's also interesting because I know in AAC research it's shown that, you know, if you give a kid like a speech generating device, for example, there's that whole myth that they'll never learn to talk because now they have this device. And that's actually a myth because nine times out of 10, they actually do start talking more when they do have the device. And they can, you know, whether it's rehearsal or whether it's just maturity and, you know, what have you.
So it's interesting to me, have there been children who worked with a facilitator who then developed the ability to speak later?
And do you know of any cases like that?
[00:33:52] Speaker B: I. I don't. I don't.
[00:33:54] Speaker A: Okay.
It's interesting. Okay.
[00:33:58] Speaker B: Yeah, I'm trying to think. No, no.
They have in some cases learned to facilitate with the parent just sitting in the room with them, but the. Or the facilitator sitting in the room with them, but they always have to be within visual or auditory range. Interesting of the, of the facilitator and.
[00:34:20] Speaker A: Also for those kids, like the one you saw in the movie who was saying like, no more, no more.
It's interesting to me because I could see like one interpretation could be they're never going to really learn how to talk anyway. That's why you don't see people who learn how to talk because these aren't people who have the ability to do that, which is. Okay, you don't have to use Your mouth, whatever. Yeah, right.
But I do also find it interesting because as a, like trying to put myself in the shoes as like a kid, right. If I'm trying to verbalize a request, if I'm trying to speak a request and it continuously gets ignored, I'm probably going to stop making that request.
[00:34:57] Speaker B: Right.
[00:34:59] Speaker A: So it's kind of an interesting, like what is actually at the root there. And if you don't do any sort of testing or reflecting or trying to figure out why there's this difference between like aac, current AAC research showing that kids pick up more speaking as they use a device versus what they're seeing in fc.
It's like you'll never know. Is it these kids just literally never would or is it that the voice is being ignored anyway, so why use it, you know?
[00:35:30] Speaker B: Yeah. That reminds me of a study from Canada, I think where they were testing people with for authorship in fc.
Some of the individuals included in the group had limited literacy skills. So they could independently, without a facilitator, they could type a limited amount of words. And they found that during the testing, they weren't testing for this specifically, but they found as they did the study over time, the students that were using facilitated communication who also had limited literacy skills, lost the ability to communicate independently as time went on because the researchers thought it was sort of this passive, you know, you're giving up responsibility for your communication to the person who you're facilitating with.
So there was this. They, you know, they just, it's like it's easier just to have the facilitator point to the letters for me. Why wouldn't you. Communication is really difficult, you know.
And so if somebody's gonna, you know, like this was a touch based form of facilitated communication. But I would assume that it's also true for. I'd like to see a study done.
[00:37:03] Speaker A: Yeah, right. It would be nice with the so.
[00:37:06] Speaker B: Called no touch forms of fc because I think the results would be exactly the same.
[00:37:10] Speaker A: Yeah, well, we have to have internalized motivation to communicate like without any reciprocation or any acknowledgement for our own internal thoughts and what we want to say we're just going to give. I mean that's essentially the same psychological premise around like gray rocking, for example. Like when people talk about narcissistic stuff and they talk about like, like I don't know if you've heard of like Darvo and all that stuff when it comes to, I mean this is like information holes. I go down outside of my specialty. But you know Gray rocking is the concept of like if someone with a narcissistic personality is, you know, they're gonna deny, they're gonna attack you, they're gonna say you're, you're actually the one who's victimizing them and all of this.
And the way you, the only really power you have in that situation is to just sort of stop acknowledging that they're talking kind of, you just kind of do a, you do like a smile and nod like, sure. Huh. Yeah, I guess. Yep, you're right. Okay. And then you just move on because like you don't have the power, you're the victim. So you, you're never going to be able to get them to stand down basically. Right. So I just find that really interesting because it goes right along with that stuff. But also just in general the idea, if you need internal motivation, you need to have some success in terms of, of having someone reciprocate, having someone, you know, address your needs, acknowledge your protests.
[00:38:31] Speaker B: Right.
[00:38:32] Speaker A: Like this is all part of building safe relationships when it comes to trust and, and that kind of connection. So it is interesting to think of that where it's like, yeah, I could see that if you're not being listened to, you would probably just be like, well, abdicate control.
[00:38:49] Speaker B: But I've seen some YouTube interested to get your perspective on this too.
I've seen some videos of FC sessions where especially with the touch base, but sometimes with the no touch forms of FC where it seems almost like a self stimming kind of behavior for the. I don't know that it's meant to from the facilitator isn't perceiving it as that, but the kid is like looking into space and just like waving their finger towards the board or whatever or having the person hold their hand. And it really comes across to me as that might be comforting for that person in some way. They're just tuning out and letting that sensory stuff go.
[00:39:41] Speaker A: I mean it's very possible it could be stemming. I mean there is also, especially in the world of AAC these days, there is what I would interpret it this way where, and I've had students and clients who do this where you give them a device and they just kind of hit a button over and over and over and over and over and over and over and over and over again.
Or they just kind of hit random buttons constantly and they get the speech generation or whatever.
And it looks a lot like stimming.
But the thought is it could be stemming. It also could be like kind of babbling essentially, there is that thought that maybe when they're presented with a new device, they kind of the way people, you know, babies babble to kind of figure out how to use their mouth. Right. And for speaking and stuff. That's sort of the thought is like they're trying out the equipment essentially. So it's like it would make sense to me, I guess that an AC user, if you hand them a new device that they've never seen before, they might just kind of try it out.
What does this sound like? What does it sound like if I.
[00:40:40] Speaker B: Play this one and yeah, especially if it's voice activated. Be. Be. Be. Be.
[00:40:44] Speaker A: Be.
Exactly. And maybe they run into a word that like, they just like the way the words the voice says it and it's like really cool. So then they sort of stim on it a bit. So it wouldn't be too surprising. I also see it happen with. When it comes to looking away while you're pointing to things. I worked at a preschool once where that was part of their day was to point at their picture schedules for like what's next.
But those teachers used hand over hands so often they would just kind of grab their hands and make them point to it and then send them on their way that the kids just, just looked away constantly.
[00:41:16] Speaker B: Wow.
[00:41:17] Speaker A: And so I would work on them sometimes because some of those kids would get a pretty dysregulated from having their hands grabbed. Sometimes they would be like, they don't like it. So I would say like if. Use your eyes to tell your finger where to go and here's my hand if you need it as like a guide. But eventually they were able to just like independently point to the pictures. And it kind of helped with the regulation around the transitions because it was less physical movement, you know, less someone else physically moving them and more them being able to do it themselves. And then they felt a little more interesting and it just kind of helped because some of those kids just got so dysregulated from the. We have to pull you over to the calendar and then you have to point at the icon and we'll force you to do that and then we send you on your way and the kid would just like look away and just let it happen. Basically because it's like they're little, they can't fight back against a larger adult. You know, like they don't have that much power.
[00:42:08] Speaker B: It actually sounds like my student.
Yeah, she was in, she was in high school. But you know, like, if I'm sitting there really close to her and, and having her, you know, do this and. And she's done, you know, like, she. I've got scars and she's like, hit me and stuff. And.
[00:42:25] Speaker A: Yeah, like, the protesting, right? Like, that's pretty clear. Protesting.
[00:42:29] Speaker B: Yeah.
[00:42:29] Speaker A: Yeah.
[00:42:30] Speaker B: See, but I didn't take it as. I took that. I took it as a break of the trust because I had the, like, my facilitator mindset.
[00:42:37] Speaker A: I see.
[00:42:38] Speaker B: This is. Why is she lashing out at me. Somebody she trust communicates with.
And so that. That led to.
I don't know if you want to talk about this in the. But the false allegations of abuse.
[00:42:50] Speaker A: Yeah, yeah, yeah.
[00:42:52] Speaker B: Because then. Then you think. And this is like, when did. In early 1990s, there was all kinds of, you know, in the training as a teacher, you go to workshops and they're like, you know, kids might be acting out at school and something might be happening at home. It was sort of like in the ether.
[00:43:14] Speaker A: Yeah.
[00:43:14] Speaker B: And so, like, for me, as a facilitator, I'm like, she. Why is she breaking that trust? Like, she trusts me so much that she'll communicate me. And why is she hitting me? Well, she was hitting me because I was in her space and she was overstimulated and she didn't want me in her space anymore. That's. That. That's what I think.
[00:43:37] Speaker A: And she has no way to tell you she wants a break. It's like, not that she hates. Hates you. She just doesn't. She just wants a break. She just wants to do I'm done.
[00:43:44] Speaker B: Like, I'm done. You know, and she knew she couldn't leave, you know, like, yeah, I'm done with this.
[00:43:50] Speaker A: Yeah, that makes sense. And that's also interesting, the psychology around, like, you wouldn't protest against someone you do trust because, like, once again, from the trauma form perspective, I always kind of go that meta, more human level where it's like, wait a second. I mean, how many of us have not protested against someone we actually trust and love? Like, how many.
[00:44:09] Speaker B: Yeah.
[00:44:11] Speaker A: How many of us grew up in a household where your mom would be like, take out the trash. And you're like, I don't want to, mom.
[00:44:15] Speaker B: Yeah, you know, like, yeah, you know, yeah.
[00:44:19] Speaker A: Or like, your spouse asks you to do something, you're like, ugh, do I have to right now? Can I just do that later?
[00:44:23] Speaker B: Thanks.
[00:44:24] Speaker A: Like, you know, like, we all protest with people, Even if they're the closest people in our lives, we trust them a lot.
[00:44:30] Speaker B: Yeah.
[00:44:30] Speaker A: A lot of that is why we protest with Them because we're safe to do so. Right. So true. It's. It's interesting. Or at least that's why our protests are like gentle protests. Once you're. You feel safe to have to. To say it, hopefully.
[00:44:43] Speaker B: Yeah. If you've got a healthy relationship, they're gentle. Right? Yeah.
[00:44:46] Speaker A: But if it's not healthy, that's when you might get a little more forceful with your demands, you know, to some extent.
[00:44:51] Speaker B: Right.
[00:44:51] Speaker A: Yeah. So it is an interesting part of the training and the psychology in that sense of, like, if they trust you, they'll never protest. When I'm like, thinking kids protest all the time.
[00:45:02] Speaker B: Sure they do.
[00:45:03] Speaker A: All the time. All kids, regardless of cognitive status or not or. Or what have you.
[00:45:08] Speaker B: You know, if she was typing, she should have, you know, if it was. The typing was really coming from her, she. She would have typed out, I'm done. I don't want to do this anymore. Get out of my space. Or whatever. But you don't. Those aren't the kinds of communications you generally get through facilitated communication. They don't. They don't sound like real kids.
[00:45:27] Speaker A: Yeah, that's interesting. It's also an interesting thing of, like, how much my professors drove home multimodality, communication, honor, multimodality, honor, multimodal. It was always that, like, it doesn't have to be the device. It doesn't have to be whatever AAC you're using. It can be eye gaze, it can be body language, it can be vocalization. It doesn't matter. You honor it if it's. If you're seeing a protest, address it, honor it, acknowledge it. Same with requests. Same with whatever the pragmatic intent is behind it.
Don't just let that lie. And it's just interesting that that's a difference there in terms of what the training you had. And I'm assuming what more current iterations have in the sense of. I mean, possibly. I don't know if the current ones have that. Where it's like, yeah, I am.
When.
[00:46:15] Speaker B: When I was trained, they talked a lot about using different modalities, but that's not what happened in real life. In real life, once you started using fc, that was the only thing you used in spelling to communicate and rapid prompting method, which is how this gets back to. Is it all fc? Yeah, it took us, what, half an hour or something to get back to this point.
[00:46:40] Speaker A: But yeah, you know, this works.
[00:46:42] Speaker B: So at some point, fc, the touch base fc, turned into or transformed into the no touch forms of FC that exists today. And you can trace the line from the people who the person Somapedia. I'm sure I'm butchering her last name, but she's the quote unquote inventor of rapid prompting method. And she started out with traditional touch based FC but was getting pushback and so she wanted to develop something that looked different than touch based fc. Because to proponents the problem with FC wasn't that it doesn't work. You can't have a dependent form of communication that leads to independent communication.
But because people were saying back then, you know, who's doing the pointing, who's touch? You know, they were really focused on the touch part of FC and not.
[00:47:44] Speaker A: The general, like with the court cases and all of that, right?
[00:47:48] Speaker B: Not the generalized cueing and not the comprehension problems or any of that. It was like who's doing the pointing? So in facilitators heads they're like, we know this works, but we need to come up with a way that looks different than touch based fc. So the no touch forms of FC started occurring where the facilitator held the letterboard in the air and the person who was being facilitated without being touched would point a. You can train somebody to point their hand or finger towards the letterboard and so that's how that all developed. So I call it all fc. But traditionalists will say there was a touch based facilitated communication and then there's spelling to communicate and rapid prompting method and spelling method. We've got like on our Website We've got 26 or 27 different names for facilitated communication, supported typing, informative pointing. But it's all if you look at the facilitator behaviors, that's what I encourage people to do and say, how much work is a facilitator doing to get the spelling to come across?
What behaviors are they exhibiting rather than the person being facilitated?
[00:49:16] Speaker A: And that is where I'm going to go ahead and leave part one off here.
Tune in in another week or two for part two of my interview with Janice and I hope you enjoyed that one.
If you have any ideas or suggestions or thoughts that came up during this, let me know. But also go head over to Patreon since it's a free access. You might as well click on over there and there's a, a place to send me messages, I think under the chat option. Send me a message through that or maybe present a chat topic. If you want to talk about this a little bit further.
I would love to hear everyone's thoughts on what we've discussed so far on this episode.
And get ready for part two. It more fascinating stuff to come.
In the meantime, while waiting, I hope you can treat yourself with a lot of kindness.
And until next time, thanks for listening.
[00:50:17] Speaker B: Bye.
