Facilitated Communication, Ethics, and Harm: An Ethical Deep Dive (part 2 of Former Facilitator Interview)

[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. Hi everyone. Welcome back. So sorry it took me a little while longer to get this episode out than I wanted. Of course one of the big things that happened is unfortunately with that snow slash ice storm that went through the country, oh gosh, I guess about three weeks ago now, I fell and I broke my left wrist and had to have some surgery done and that has really slowed me down, especially with editing and things like that. So apologies, but I'm finally back able to type, able to do things with it and on the mend. Everything's starting to get better from there. But before we jump straight on into this episode, I just want to provide a little bit of a review of what we talked about in part one. If it's been a while since you heard that episode or if you just skipped it, which I do recommend going back and listening because Janyce provides so much great information, I think that's so important for really understanding the nuance of facilitated communication and the new variants coming out and just the type of discussions that are ongoing right now. In that first episode we listened to some of Janyce's story, how she got involved with facilitate communication, the kind of training she went through for it. I also brought in some of my own reflections as an SLP who's worked with non speakers and with aac. So in this episode we do go a lot deeper into those ethical concerns. We also talk a lot about like subtle cueing and you know, sleight of hand type of dynamics that can really make some of these methods look really real and really appealing even to really thoughtful reflective professionals or parents or caregivers who care really deeply about the non speaking children that they're trying to help. I think this episode is really important for anybody who identifies as anyone in any kind of helping profession or caregivers of any non speaking child and or adult because we are asking really hard questions about consent, autonomy and what it really means to actually do no harm as well as our own biases that we come into helping with that can really lead us down potentially very dangerous rabbit holes where we can really believe that we're, we're helping. But in reality there's potential for some very significant harm to happen. And it's a tough discussion, but I think it's extremely important to listen to. However, with that said, if you do start to feel yourself feeling conflicted or uneasy or kind of dysregulated during this episode. Please do just pause it. Give yourself some time, sit a little with that discomfort, you know, process through those emotions a little bit and then come back to finish it when you're feeling a little better. I also want to let all speech language pathologists out there, if you're listening to this, if you're an slp, I've been seeing on Reddit right now on the SLP subreddit, people bringing up that these newer kind of facilitate communication approaches are, are now cropping up in occupational therapists clinics and places like that. And I did want to offer this because I've had ongoing email correspondence with Janyce since recording this interview, and she's let me know that the people who really promote these approaches, they are actually purposefully marketing to a wider range of professionals out there, essentially trying to bypass SLPs to some extent. Because Asha has maintained a very firm stance against these methods and they have found SLPs to be a lot harder to sort of get on their side to some extent. Here they are actually targeting, like occupational therapists and they're framing these techniques as really only working on fine motor and not really working on communication. You're really just working on the motor part. But because you're an ot, you can totally do it because it's working on the motor part, which personally I don't quite understand because, I mean, the facilitator's the one moving the board, so I'm not exactly. Or holding the board, so I'm not exactly sure what fine motor like exactly how that works. But I thought it was important to mention on this professional SLP podcast to let other SLPs know out there, don't be too surprised if you see other professionals promoting this stuff, even if communication is not actually their scope of practice, because there's an intentional push toward getting other people to apply these techniques. That is 100% communication creeping into our scope of practice and in my opinion, potentially putting even more clients at harm. So I think that also adds an extra layer of why this interview is really important. And I think it's so important for us as SLPs, although we might know better, we might know these are suspicious techniques. I think it's still important for us to at least keep up with what's going on with this and to educate ourselves on where this technique might be pushed the most, because they're doing another push essentially to spread them around. And it doesn't, as Janyce said, I believe somewhere in here, facilitated communication never actually went away. It just went underground for A while. And so it's kind of coming up from the underground, giving itself a push. And I'm sure history will repeat itself. It'll probably go back underground. But it's important because I know, at least when I was in graduate school in the mid 2000 teens, we were taught it's gone. Facilitated communication is dead and gone. And that's it. The other thing I'm going to do, though, there are still actually some deeper topics that we talked about that Janyce and I talked about that I'm actually going to put on my Patreon page for free. I'm only going to put it there because it does touch on more specific, like, deeper topics, including like adult intimacy and consent and questions around that. The link is in the show notes, so feel free to click on over there and listen to another 30 minutes or so of Janyce and I kind of diving even deeper. All right, that's enough of jibber jabbering for me. Let's go ahead and get back into the interview. And this is going to pick up right where we start talking more about the false allegations of abuse that Janyce was involved in. So I hope you enjoy and gain some great insights and yeah, let's get on with the episode. But it is interesting to me too, when you were bringing up the court cases, like when we think of the, the there are those abuse allegations which for listeners. I did do a previous episode on this, which, you know, I can maybe put the link or the title in the show notes that went a little bit into. I didn't get super into it, but the history of. Yes, there are allegations against abuse. And then the courts ordered actual like blind, double blind type experiments to see what was really going on here. It's interesting to me because it does sound a little. I'm not a lawyer, but I follow some online, so obviously I have some armchair knowledge. [00:07:31] Speaker B: Me too. Yeah, me too. Right. [00:07:34] Speaker A: No, but it does kind of sound like the legal system is so specific with what it asks for. Certain things and certain evidence. It does sound like a very interesting workaround from like. Well, the law says the court cases showed that holding the hand meant this was happening. So if you don't hold the hand, suddenly it's a brand new thing. [00:07:58] Speaker B: Correct. [00:07:59] Speaker A: At least as far as, as far as, as far as the court cases are concerned. Right. You can't call upon those former ones. You know, the, the touch based. [00:08:08] Speaker B: It came out of the pushback that The Touch Base FC was getting in that in the mid-1990s. But, but even like, if you Read. I can't think of the book. I think it was IDO in Autism Land. [00:08:23] Speaker A: Okay. [00:08:24] Speaker B: And so the mom is talking about using touch based fc, but the school system, the people at the school system were like, yeah, you know, there's no evidence for that. You know, like, you need to be really careful with that kind of support. And so even without any inkling of false allegations of abuse, she was like, well, I gotta figure. Cause I know this works. I know there's a link between me and my son. I know he's in there. And so I need to come up with a way that makes it look like I'm not. [00:09:05] Speaker A: Not actually doing what they think touching [00:09:08] Speaker B: his hand or anything. Yeah, yeah. And she actually came up with a pretty interesting. I don't know whether she was using actual like hand letter spelling with him, but she came up with a system of hand signals. [00:09:20] Speaker A: Oh, okay. [00:09:21] Speaker B: Which she used very clandestinely. If you watch the videos that kind of in his peripheral view, but just down below at the edge of the camera. So like very subtle. So they were able to get some responses using the hand signals. But then they never, those are never faded away. You know, like the. The person just. [00:09:44] Speaker A: Right. [00:09:45] Speaker B: Learns the hand signals. [00:09:46] Speaker A: He's not independent. That person still has to be there. [00:09:49] Speaker B: Well, they're saying it's. And from a. You're right. But from a facilitator's perspective, they're like, I'm not touching him, so it's independent. [00:09:57] Speaker A: Ah, I see. Okay. Yeah, I see. Is that still what the people who use letterboards and move the letterboards would think? Is that because they're not touching the person, it's still independent? [00:10:08] Speaker B: Yes. [00:10:08] Speaker A: Is that the. [00:10:09] Speaker B: Yeah. [00:10:09] Speaker A: Logic behind that? Okay. [00:10:11] Speaker B: Yes. [00:10:11] Speaker A: That's why they see it as different. [00:10:12] Speaker B: Okay. Yes. [00:10:14] Speaker A: That's so strange. It's just to me it sounds like you just flipped. You just flipped the coin. It's like you just. Heads or tails. It's like you move the hand or you move the board. It's like it's still somebody moving it, [00:10:24] Speaker B: you know, but it's more convincing. The other thing that happens with the difference between an observer that's looking at touch based FC versus no touched fc. So with touch based fc, you're watching the person hold onto their wrist and move the letterboard. So it can be really subtle, but that's for the most part, if you see somebody grabbing somebody's elbow or grabbing somebody's wrist or even their shirt sleeve, then you're more likely to say, I think that facilitator Might be doing more than she thinks she's doing. But if you're holding a letterboard in the air, the observer tends to watch the, the person being facilitated and they miss the cues that the facilitators are. So they don't look at the board [00:11:17] Speaker A: moving, they're looking at the finger. [00:11:19] Speaker B: Basically they look at the, the autistic person's finger moving, hand moving, like he's touching that keyboard. He's, he's moving his hand and touching the letterboard. But what they don't see is that the facilitator is using hand signals like move your finger up to the top of the letterboard or you know, over. They're not listening to the verbal cues or the physical cues that the facilitator is giving off. So the facilitator can actually be making huge gestures, but the observer is looking at the person being facilitated. [00:11:57] Speaker A: Oh, that's interesting. It's like a sleight of hand kind of. [00:11:59] Speaker B: It is, it is. Some of this actually does come from the magic world. The magicians actually use this, something called the idiomotor response where it's small muscle movements. Not all facilitator cueing is small muscle movements, but moving the letterboard in the air is. And a lot of the touch based FC has to do with small muscle movements. And magicians use that all the time in their tricks. That's how they fool people is these small, you know. So if you look into the psychic world and the magic world, you can, that's why James Randi in, I think it was 1992, he was a magician and skeptic. He was called into the University of Wisconsin to test children for psychic ability that they were being facilitated. And he saw right through it, like in six seconds. As soon as he saw it, he's like, you know, the six year old is spelling out huge medical terms. You know, there's no way that he would know how to spell that, you know, and he could, he could, you know, like he had the, there were two facilitators, he had him leave the room, the kid had lunch, he had a sandwich and then he came back, he had the facilitators come back in and type out with the child what he had for lunch. And the first person said peanut butter butter sandwich and the next one said salami. They had two different answers based on the two different facilitators. So, you know, like he saw it right away and he wasn't trained in speech, language development or autism or anything. He just knew as a magician And a skeptic. There's something more to this than just magic. [00:13:54] Speaker A: And as a magician, he has this nuanced training around, like, recognizing really subtle body movements. Right. Like, yeah, they're trained to notice those really subtle things, I'm sure, because that's probably such a key part of what they do in their work. [00:14:06] Speaker B: Absolutely. Yeah. [00:14:07] Speaker A: Yeah. That is really fascinating. Wow. [00:14:10] Speaker B: There's a. His name is Joseph Jastrow. He was a psychologist in. I think he wrote in. I can't remember if it's 1835 or 1935. But anyway, 100 years ago. And he was. He. There's. There's little bits and pieces that could be equated to facilitated communication for way back then, based on body movements. [00:14:31] Speaker A: Wow. [00:14:32] Speaker B: You know, and so. [00:14:34] Speaker A: Yeah, interesting. [00:14:36] Speaker B: Yeah, we did. [00:14:37] Speaker A: Wow. [00:14:37] Speaker B: Yeah. If Rosemary Crosley and Douglas Bicklin had actually done their due diligence and done any research at all into the ideomotor response, which is also equated with the Ouija board and moving a planchette, then FC wouldn't be what it is today. They just didn't. And when the skeptics were like, that looks an awful lot like moving a planet on a Ouija board, they were like, oh, well, no, it's not that. And they just moved on. They didn't take the reliably controlled testing [00:15:20] Speaker A: seriously, which is interesting because ideomotor is completely subconscious. It's just. It's like noise in our nervous system. It's just how our nervous system kind of works in a way, some of it is. [00:15:29] Speaker B: And, yeah, it's like driving a car, [00:15:30] Speaker A: you know, so it's interesting. You can't really say that you're not doing it because everybody does it. In fact, like, I think for neurology, sometimes when people get, like, essential tremors, for example, I remember There was a PhD student when I was going to my master's who did stuff on vocal tremor, and that was part of her presentation, was how people with, like, essential trimmer in their hand, if you have them, you know, if you have hurt somebody, you give them a pen and you tell them to, like, draw a swirl. There's going to be some little, you know, a little waviness in the pattern in the line, because that's part of our nervous system. You can't, you know, most people, unless you're like, I guess, a trained artist, most people aren't going to draw a perfectly clean line. [00:16:10] Speaker B: Even trained artists, they. They know how to cover it up. Yeah, there you go. [00:16:15] Speaker A: Yeah, you are A trained artist. There you go. Yeah. Because I have, I have seen that where it's like use your. You prop your elbow out to make it straight or curved or whatever. And it's like. Yeah, so this is more like in the air, just drawing it. And then if people start developing like a tremor, you'll start to see the tremor in that because that's basically the waviness and the little bumps get bigger because that's a similar sort of thing. And it's interesting too, because our brains and our nervous system is just naturally kind of noisy. And I think human to human, our brains just kind of know to filter out that noise. Like, we don't, which is why the musicians can use it, because we don't. Our brains are not trained to see it. Our brains are just like, ah, that's just natural little bumps from just interacting with a human. [00:17:02] Speaker B: Well, I had, I had kind of. That reminds me of when I was going through the testing. So. So in my case, there were false allegations of abuse that came out. And so we were thinking that maybe something was happening at home. And so they, after some hemming and hawing, we got to a point where we were like, what do we do? Do we move forward? We don't really know what FC is. Right. It's still fairly new. But if this was a typically speaking person, would we move forward with contacting the Department of Human Services with these types of allegations that are coming out? And they were coming out with at least two different facilitators, me and another person. We were talking to each other, we were planting seeds into each other. But that's, you know, you don't know you're doing that. [00:17:51] Speaker A: You're just kind of. [00:17:52] Speaker B: I know that now. I didn't know that then. So we moved forward with the, with the testing. So what happened in my case was the Department of Human Services was called my student and I did the DHS interview where their asking you all these pretty pointed questions. I mean, they're thinking this is sexual abuse. So they're asking like, who, what, where, when? And of course those answers are coming, whether they're fabricated or not. Right. They were. They were FC generated and I was the facilitator. So they came. I, you know, took me a long time to be able to say this, but they came from me, but in my imagination. And so based on the allegations that came out in the DHS interview, the children were removed from their home. And then fortunately, and I say fortunately because this doesn't always happen. The guardian ad litem that was hired to look after the best interests of the children, kind of thought about facilitated communication and said, wow, we're in a really tricky situation here. Because if this, if we're making these allegations based on a bogus idea. And he says this, he's Phil Warden on the Prisoners of Silence. PBS or Frontline show Prisoners of Silence that came out in 1993. He was interviewed. So he was like, if these allegations are based on a bogus idea, then that's horrible. But if the allegations are real and we're just using a new technique and unproven technique, but the allegations are real, then that's terrible too. So we need to figure out a simple way to figure out the truth in this situation. So he called Howard Shane from Boston Children's Hospital, who to me, it was probably the best thing and the worst thing that's happened. But Howard Shane is somebody who right from the very beginning, advocated for independent communication in the clients that he was working with. And his team developed some of the first computer based communication systems in the country. And he worked with people like Stephen Hawking. [00:20:32] Speaker A: That's who I thought of immediately. I'm like, Stephen Hawking, probably. Yep. [00:20:36] Speaker B: Right. He was one when computers used to be really huge. He, like, they anchored one to this guy, he had cerebral palsy. They anchored this computer to his wheelchair and figured out how this person could communicate independently without a facilitator, you know, like blowing into a straw or, you know, he said, if you can twitch a muscle or blow into a straw, then, then. And you have the ability, the, you know, cognitive ability to understand and use language, then you can communicate independently. You don't need a facilitator. Anyway, he did the testing and he came up with this really simple format for testing. So one of them, I think we went through like three or four different kinds of tests. It was all designed so that I, as a facilitator, didn't, excuse me, didn't know the answers. So it was all based on my student. I sometimes point to my right because that's where my student used to sit. [00:21:40] Speaker A: Right, right. [00:21:41] Speaker B: Yeah. So my student. It was all based on information that my student should have known, could have, and should have known, like based off of previous things from her curriculum, questions about her family life that I wouldn't know. [00:21:56] Speaker A: Got it. [00:21:57] Speaker B: Okay. Those kinds of things. So it's not an IQ test. It wasn't meant to trick her. She even had a secret signal that I didn't know about so that she could stop the testing anytime she wanted to. So she had the choice of to participate or not in the testing. And that was all set up ahead of time. And then I came into the room. So Howard did this test. One of them is, I think it's fairly well known where we were both shown a picture. And sometimes they were the same and sometimes they were different. And we were asked to type out what we saw in the picture. So all of the answers that were the same when we had the same pictures, of course, were spelled correctly right, because we had the same picture, but all of the pictures that were different. So she saw something. She might have seen a cat. And I saw a shoe. Right. So all of the pictures that were different were. The facilitated answers were based on what I saw. So I saw a shoe, I saw a hamburger, I saw a tree. Hers were different. They were all based on my answers. And so during that testing, and this goes back to what happens in, like a facilitator's brain. Um, there were sort of. I had these kind of breakthrough moments where, like, in a controlled situation like that, the facility, I was like super, like hyper conscious of my own thoughts, my own breathing, you know, like. So I have what I call breakthrough moments where I could feel myself saying, I wonder if she has the same or different picture than I. Oh, wow. [00:23:48] Speaker A: Yeah. [00:23:49] Speaker B: And so I developed, during that time that testing is sort of like, I developed some sort of sense that, okay, something's going on. That's, that's, you know, this is coming from me. This isn't. These are thoughts coming directly from me. They're not coming from my student. [00:24:07] Speaker A: Interesting. [00:24:08] Speaker B: And I think that probably happens to facilitators all the time. But if you're in a uncontrolled situation, so especially when you're beginning to learn facilitated communication, you're a little self conscious. You're like, oh, I moved the kid's hand that time. I won't do it next time. You know, like, you have these thoughts in your head, but eventually you start. Those kinds of things fade away. Those thoughts fade away and it begins to feel. It's more about a feeling than it is about an actual sense of accomplishment. And it feels like it's working. Right. She's not resisting holding my hand and pointing to a letterboard anymore. You know, the letters are the. You're taught to. You're taught to start with, like, fill in the blank. Or if maybe you've got four pictures and you pick one, you know, point to the cat. Well, the problem with that also is that the facilitator always knows the answers all the time. Right. So if they point to a cat, it's because the facilitator knows the answer and knows what a cat looks like and knows how to spell cat. [00:25:18] Speaker A: Yeah. [00:25:18] Speaker B: So it's all based on the facilitator. But that's not what. That's not how the training is set up. You don't like. I'm talking about, like 30 years later Janyce, who understands how facilitation works and not, you know, 30 years younger at the time. [00:25:34] Speaker A: Yeah, exactly. Right. [00:25:36] Speaker B: I'm just going by the guidelines. You know, they're like, show her four pictures and have her point to one. Oh, yeah. And so, like, yeah, she holds my hand and points to the letter C or the cat or whatever, and it's like, oh, she knew cat. Wow, that's great. And then you start convincing yourself over, you know, it's like turning up the. The bath water, you know, by degree, you know, like, you convince yourself. [00:26:01] Speaker A: You just get used to it, even it. [00:26:02] Speaker B: Like, I have some friends that sort of debunk. They don't sort of. They do debunk psychic readings and things like that. And it's sort of like you remember the hits and forget the misses. So you remember all those times when it feels like she had the correct answer. [00:26:20] Speaker A: Right. [00:26:21] Speaker B: And that FC's working and you miss. You forget all the other stuff, like the unintelligible answers, the time she's hitting you in the head. You don't think of all those things. You just focus on. FC works. FC works. You just have to keep practicing. That's the other thing. In the workshops, they tell you if it doesn't work at first, you just have to be patient. You just keep giving it time and eventually it will work. Well, eventually it does work because you're training the speech clinician who worked with my student after I. Well, reasonably, the family asked me not to work with their child reasonably. I'm not blaming them in any way, shape or form. [00:27:08] Speaker A: That makes sense. Yeah. [00:27:09] Speaker B: So anyway, after the testing, I wasn't to work with the student. And the speech clinician that came in after me said, every time I get out certain equipment, she just grabs my hand and automatically starts to point. So that's when I started thinking. And it's true in the literature now that now we know that really a lot of FC is about behavior modification and teaching people to point on cue. Doesn't have anything to do with spelling. It doesn't have anything to do with comprehension. It doesn't have anything to do with communication. It has to do with pointing to the letterboard. It's all. I think it's like a. Sometimes I think of it as a coping strategy for the facilitator and not the. It doesn't really have anything to do. Useful to do with the person being facilitated. [00:28:05] Speaker A: Like coping as in. Can you go more into that? [00:28:08] Speaker B: Well, some of the things that happen is that the student may become more passive. They actually abdicate responsibility for communicating. So their behaviors may. Some of the facilitators report that their behaviors are reduced just because they're passive. They're just letting this activity happen. The other thing for the facilitators is that many of them have been told that their child. Maybe they've gone through traditional speech, language therapies and stuff that don't seem to have the impact. Reach the same standard or level sophistication of communication with their. With their child that FC does. So the parents can have these conversations, you know, all of a sudden, maybe they're talking to somebody that's gonna go to college or are really philosophical about life and teaching the parents what it's like to be autistic and all that kind of stuff. But it's all. I think it's all in the facilitator's head. [00:29:13] Speaker A: It's like the parent kind of almost like a self suit. Like a self therapizing kind of thing in a way. Like they're. [00:29:20] Speaker B: Maybe there's a. In the movie. Yeah, I think it is the. In the movie, the reason I jump. I'm pretty sure it's that movie. There's a. There's a scene where these people are from Sierra Leone. And there's a lot of, like, superstitions around autistic people. Especially some of the behaviors that autistic people can exhibit were seen as almost being a product of the devil kind of thing. [00:29:54] Speaker A: Right. [00:29:54] Speaker B: So in that situation, if you can say, well, I know my son or daughter's behaviors can be kind of strange at times, but he's writing poetry. You know, we're talking philosophy and we're. [00:30:08] Speaker A: Or they're quoting like a holy scripture that makes it not evil. [00:30:12] Speaker B: Exactly. Yeah, exactly. There's a. There's also a. Like a religious component to some parts of fc and so it makes that person more relatable. You know, if you can. If you can. If you can communicate with words in particular, then that seems to calm people a little bit. You know, like, okay, I'll give those behaviors a little bit more grace. Because this person now is, you know, like, I can See that this person is communicating with words in a way that I understand it. [00:30:50] Speaker A: That is absolutely fascinating to me because that's like one of my big soapboxes is dehumanization and how prevalent it is, especially with disabled people and autistics, obviously non speakers. The kind of stigma and bias that we still contain in our heads. We're just raised in society like that way. It's so fascinating because essentially it sounds like you're talking about people who are humanizing them all of a sudden. Like they weren't really people to them, but now that they're writing poetry and they're able to do all these things, oh, this is actually a human now. So I don't have to be scared that they're evil and I don't have to sit here and, you know, try to protect myself or whatever. Now I can actually see them as a human. Therefore, if they're lashing out, maybe there's actually a human reason for it, not just like an evil reason, for example. And it is so fascinating because I think at the core of a lot of these things is that there's the dehumanizing piece, there's the societal piece. And even in the US Here, thinking of like, you suddenly have a kid who might go to college, it's like, that sounds a lot more positive than the idea that your kid might need lifelong caregivers for dailies of activity living. We don't have a lot of good social supports. Once they exit out the school district, they might have to end up in an assisted living facility somewhere. What happens to the parents? How do we afford this? We don't have very good answers to any of that. [00:32:28] Speaker B: No, we don't. [00:32:29] Speaker A: And most of the answers are horribly like, it just sounds like a nightmare. Right. And it's never would be what a parent would want for their kid. [00:32:37] Speaker B: No. [00:32:37] Speaker A: And of course, the real answer for that in my mind is we need to change the system. [00:32:43] Speaker B: That's what I think. [00:32:44] Speaker A: And we need to change how much we support people. And supporting the parents with their own mental health and the burden of being a caregiver and like a medical caregiver, not just a parent. And like giving them time off so they could actually just be a parent, you know, like that's really important. That is something that parents almost never get when they have a kid with high support needs. But that's a very complicated answer. That's the. You have to advocate and change laws and convince people to fund it and keep the funding going and put regulations in place and Monitor the ethics and it becomes this huge, complex thing. That is not an easy answer. It's not a comforting answer at all. And it's not even something you can guarantee someone will see within their lifetime. So I can understand why it would be so appealing to think, well, my kid now could go to Harvard and be the next Stephen Hawking or something. They could go to Oxford possibly, instead of the other potential, which is like this much more devastating potential future of being stuck in a system that does not value them at all. And so I can understand that emotional drive toward that, but at the same time, you're still actually dehumanizing them. It's still that moral model of disability, because moral model has. They might be evil or something, but there's also the inspiration porn side of the moral model of disability, which is like, they're here to help us understand ourselves and they're here with this wisdom and they're these higher beings and that kind of a thing. Right. And it's like across the disability community, you know, people in wheelchairs who are just going to their job, they don't want someone on the subway to be like, oh my God, you're so inspirational for just like existing in your wheelchair on the subway. [00:34:36] Speaker B: They just want to be a person. [00:34:38] Speaker A: They're like, I'm just going to work. What? Like I go to work differently than you. Like, okay, sure. And so that's still sort of the danger side. Is that you. I can see, I can see someone feeling like, this is a great answer to ethically what happens to my kid as they get older. And then also the ethically. Well, I don't want to see them as less than human, so I'll see them as superhuman. But that's still not human. [00:35:07] Speaker B: No. You know, that's happening with the telepathy dates too, which is. And I think the so called no touch forms of FC like spelling to communicate and rapid prompting method are. There's a whole like a lot of the stories we're hearing of false allegations of abuse cases, but also the telepathy cases are coming out of spelling to communicate and rapid prompting method in particular, not so much out of the. I mean, the touch based FC is still happening, but for some reason. You talked about the telepathy tapes on one of your YouTube channels. [00:35:51] Speaker A: Yeah, the episode. Yeah, yeah. [00:35:54] Speaker B: And a lot of that is superhuman stuff. You know, they can tap into. They're so evolved, they actually don't need the spelling board at all. They can just communicate through telepathy. Right. [00:36:08] Speaker A: But the issue is the facilitator's not telepathy. I guess. So they do need the board still to. [00:36:12] Speaker B: Right, it's the facilitators. Yeah. [00:36:15] Speaker A: Right, right. [00:36:15] Speaker B: But there's also now. I mean, you'll. Sometimes I just have to shake my head. They're saying now that the testing that I did with my student, because I think they picked mine, I think in particular because it was on Prisoners of Silence, perhaps. So they're saying that the testing that I went through with my student, she was telepathically reading my mind and typing my answers to the testing. So the testing really didn't fail. We're just misunderstanding that she was actually telepathically reading my mind and typing out my answers, my responses. [00:37:05] Speaker A: That's a very interestingly circular interpretation there. I will say. [00:37:09] Speaker B: Well, it's another way of getting out of doing the authorship testing. Because they don't want to do it. [00:37:14] Speaker A: Yeah, yeah. I mean, it's not. It's Akin's Razor. [00:37:18] Speaker B: Right. [00:37:18] Speaker A: Like, they don't want to accept the simplest explanation is probably the correct one. [00:37:21] Speaker B: Right. [00:37:21] Speaker A: And then also you're inventing a situation where you can't test because they'll know the answers anyway. So now you can't. Like, what's the point? [00:37:29] Speaker B: Right, right. [00:37:29] Speaker A: It's like not. Not disprovable, not provable. It's just, you know, you're kind of taking out of that realm, which are the. [00:37:36] Speaker B: The testing that happened in the early 1990s. The facilitators are actually much more willing to do the testing, even though the guidelines have always said don't test. There were hundreds of facilitators that were willing to go through testing because they were ethical and they wanted to know what was going on. Let's see what we've got here. And most of the testing was not because of false allegations of abuse. When those started happening, there were, like, I read a number in a study. I think it was like, maybe six dozen false allegations of abuse between 1990, when it was introduced to the United States in 1995. So there were a significant. I mean, that's a lot. [00:38:27] Speaker A: Yeah, that is a lot. [00:38:29] Speaker B: 1. One is a lot. [00:38:30] Speaker A: Right, Absolutely. [00:38:31] Speaker B: So it sort of sped up the testing, but it's not the only reason why the testing was done. [00:38:36] Speaker A: Okay. [00:38:38] Speaker B: And telepathy was not talked about in any of those testing. [00:38:43] Speaker A: Not the thought. Right. [00:38:45] Speaker B: It wasn't even, you know, a thing. It's a thing now, but it isn't. It wasn't then. [00:38:52] Speaker A: I know. It's interesting because I know. I Mentioned on, I think the episode I did on that, that I think I could understand why people might think what they're seeing. But it still is rooted in my mind in that there's still kind of a hidden stigma there. There's sort of an implicit bias there. An implicit. Maybe dehumanization or something there in the sense of. I don't think they believe that the non speakers they're working with have the capability to recognize patterns like little hand signals, like you were saying, or, you know, the little subtle body differences, little subtle cues, essentially the little cues and prompts. And it's like, well, if you don't think they're cognitively capable of seeing those things, then it doesn't make sense that you think you're seeing this, like, higher being who's so incredibly intelligent but then not able to notice. Like, when mom mentions the Halloween candy or the Christmas. Christmas presents, she glances toward this one closet. [00:39:52] Speaker B: Yeah, right. Like, I mean, I would be able to find a Snickers bar if you had a hidden house, you know? [00:39:58] Speaker A: Yeah, absolutely. It's like, I knew our parents did the Christmas presents. Like, you figure it out, you know. [00:40:03] Speaker B: Right, exactly. [00:40:04] Speaker A: And it's one of those, like, once again, if you think, if it's something that a regular kid can do, there's no reason to think they can't. If, if non speakers can't do the same thing, if you're actually seeing them as humans as like fully functional humans and just regular humans who happen to have a disability, then you're looking at like, well, if a speaking 4 year old can do it, a non speaking 4 year old can do it potentially. Right. And yes, they might. Some of them might have motor conditions and things like that too. But it's just one of those things where I'm like, pattern recognition is definitely a thing. Like, my neurodivergent brain's really good at pattern recognition. I can definitely pick up on stuff, you know, like, give me the right environment. And it's also interesting when you talked about briefly revisiting the idea that facilitators use it kind of as a coping thing and stuff. This is one thing I read. I think it was somebody talking about ABA stuff, which I know is a whole other can of worms, but they were talking about how behavioral conditioning is something that a clinician can do to themselves as well. Like, we often forget that we are equally susceptible to training ourselves to see things, interpret things certain ways. [00:41:15] Speaker B: Right, Interesting. Yeah. [00:41:16] Speaker A: And so it kind of makes sense when you think of like, they became really passive. It's like you can definitely convince yourself that's a good thing. Or you could stay a little critical and think, wait, let me make sure this isn't like they're dissociating and they don't actually want to be here. And, you know. Right. Like, there's two extreme possibilities. One could be a positive, one could be a negative. And the whole point of being evidence based, even if you're not going by like a research study per se, but just staying more critical clinically is thinking, let me double check and make sure this isn't like this kid is just miserable and just waiting to get out of here. And they're actually interacting with me and want to be there. [00:41:55] Speaker B: Right. Yeah, but facilitators are always, like, locked onto the letterboard with their eyesight. So, like, they miss a lot of stuff that's going on with their. There's no. [00:42:05] Speaker A: They miss the cues. [00:42:06] Speaker B: Yeah, you don't notice it, you know, as a facility, you know, that you're told to, you know, the guidelines say, you know, like, make sure they. They've got eyes on the board and all that. But that's not what happens in real life. [00:42:20] Speaker A: That makes sense. [00:42:21] Speaker B: You're asking and answering the question. You're multitasking, basically, and you're trying to get data. [00:42:26] Speaker A: You're trying to see if it. Yeah, probably, I'm assuming. [00:42:28] Speaker B: Right. You get into this flow state, you know, of a. It's sort of stream of consciousness typing. So whatever. If I said, you know, what. What kind of. What did you have for lunch? And I. I'm, you know, like, something pops into. Or at least in my head, something pops into my head, you know. [00:42:45] Speaker A: Yeah. You can hear the voice answering you. Cookies. Yeah, yeah. [00:42:50] Speaker B: Sandwich. [00:42:51] Speaker A: That is another thing, because I know before we recorded, we talked about that a little bit. How, you know, not everybody has the, like, narrator inside their head. Not everybody has that personal monologue, that internal monologue that I do. I have it very strongly. And I know you said you do, and I was actually just thinking that also could lend itself to thinking you're receiving messages from someone telepathically, perhaps if it's like you're not totally aware that that internal narrator might actually just be another part of your brain that's chirping in. That's like popping in and saying, hey, actually say the sandwich was peanut butter. Yeah, that's probably a good guess. [00:43:24] Speaker B: And it happens. It happens really quick. You know, I don't do the testing. That's those breakthrough moments. I was kind of thinking what you're talking about right now. It's sort of like that consciousness of, oh, are those pictures the same? Or are we typing out the same or different thing? But I think that also happens with, you know, what did you have for lunch? Or, you know, like something pops into your head really quickly. You're typing it and then all of a sudden you're thinking, oh, that, wow, that person, you know, like she knew. [00:43:57] Speaker A: They like gave me the answer somehow. [00:43:59] Speaker B: Yeah, yeah. So I think that's. That's probably where that feeling comes from. [00:44:04] Speaker A: That's really interesting because I know, like, okay, this is a little personal side note. I've just joined like a meetup group in my town. That's a board game night for just adults. It's at a little brewery. We get together, we do board games, which is really fun, but there's a lot of games I don't know. So I'm just learning. But it's one of those moments, sort of thinking of the internal narrator in that sort of sense where it's like, there are times where it's like I make a bad strategy call and I just. I've sort of made a running joke that I always start strong and then I lose because I like second guess something and then I just make the wrong strategy and I totally lose the game. Which is okay. I'm still learning. It's not about winning, it's about the fun. [00:44:40] Speaker B: Right, Right. But. [00:44:41] Speaker A: But it is that moment, you know, those moments, it's sort of. I guess people also probably get this on test. I used to get that on test all the time where it's like, I'm pretty sure the answer is this. And then that little voice pops in. It's like, like actually it's probably this. You should probably answer that, especially multiple choice. [00:44:56] Speaker B: Yeah, yeah. [00:44:58] Speaker A: And it's like, yeah. And then you second guess yourself and whatnot. But it's like I could see if you're in that sort of situation and you're kind of conditioned to only interpret that one way. I could see that becoming more of the norm of like that little TD intrusive thought that's actually just an internal voice you're hearing because you have an internal monologue. I could see psychologically somebody starting to interpret it under the umbrella of maybe this actually is a different instinctual thing, or maybe it's a spiritual thing, or maybe it's a telepathic. I could see that because I think you were saying before we started recording in our little pre recording chat, how you think that people who are really successful with it likely have that kind of internal monologue. And maybe people who don't have it, maybe they don't find as much of a draw to this. They might not understand it quite as well. [00:45:47] Speaker B: I'd love to. And if you could get facilitators to talk about their process, which is not going to happen, but, you know, maybe it will someday, I'd be really interested because I'm really curious. Like, it's. It's sort of, you know, I've been dealing with FC in one way or another for 30 something years. And it's what. Keep that part of it. I'm really curious about the facilitators experience. [00:46:11] Speaker A: What's the psychological psychology around? [00:46:13] Speaker B: Sure. [00:46:14] Speaker A: The, like voices, because they know they're not like hallucinations or anything. It's just an internal voice they're hearing in their head. [00:46:20] Speaker B: It's more like an author. I think facilitators idealize the person that they're working with. They make them into a typical speaking person in their head. Right. [00:46:32] Speaker A: They kind of invent a character kind of. Right. [00:46:34] Speaker B: Yeah. So it's like an author that's writing dialogue in your head, but it's in your head and you're speaking. I think that's what happens is that you're actually speaking to this idealized version of the person you're working with. [00:46:47] Speaker A: Interesting. [00:46:48] Speaker B: Much like an author would develop dialogue for their characters. You know, if you listen to writers talking about their process, they'll often say, you know, sometimes I get so attached to these characters, and then I figure out in my story that, like, one of them gets sick and dies, and I'm like, devastated. Like. So you can generate within yourself, you can generate those feelings for the other person that aren't. [00:47:16] Speaker A: Oh, for sure. [00:47:17] Speaker B: It doesn't have anything to do with the other person. It's all internal. [00:47:21] Speaker A: Yeah. I came into this field from music, and I know a lot of famous composers, especially opera composers and stuff. They would like, fall in love, quote unquote, with like their soprano lead characters that they would, of course, then die of consumption or something. Because we're talking about opera. [00:47:34] Speaker B: Right. [00:47:34] Speaker A: You know, and it's similar thing. Right. It's like they get so invested in the character that they just sort of fall in love with them and then they feel devastated that this character character dies at the end. And it does sound weird, I think, if you're not the kind of brain that can kind of enter into kind of a fantasy world like that. Like if you have that Internal monologue that strongly and you have that much creativity and that much like kind of fluidity with how you imagine things. It's like you probably would be very hard. And it probably sounds like these people are crazy and it's. They're not. They're talking nonsense. You know, I'm sure people hear authors talk about their process and they're like, I don't know, those authors are weird and crazy. [00:48:16] Speaker B: Well, some of them are, you know, I mean, you know. [00:48:19] Speaker A: You know. [00:48:20] Speaker B: Yeah, I don't know. [00:48:22] Speaker A: Stephen King is completely balanced with some of what he wrote. [00:48:24] Speaker B: But. [00:48:24] Speaker A: Okay. The other thing I just wanted to talk about a little bit, if you're comfortable doing it. I was mentioning when we first started recording how some of this, to me, I went down a rabbit hole of like anti cold, anti high control typ stuff back in the last year or so. And so in the little bit that I know of how high control groups kind of work, it almost sounds like, especially the newer ones with the whole like, because I think you were telling me they considered it unethical to test, unethical to do that sort of thing. So then that sounds more like to me, when high control groups want to control information, it's always like, we have the real information. Don't listen to people on the outside because they don't have the actual information. And you know, it sounds like there's a lot of very. I mean, we talked about how you. You've received obviously plenty of criticism over your years. And even for me, with my tiny little babby YouTube channel, the Little teeny video I did on telepathy tapes, that is the one where I don't know how the commenters find me, but that is some of the harshest. Like the comments are really, really rough and harsh. And so. And it just seems, it gives that same energy as like if you go to a YouTube of someone who's deconstructing from some kind of high control cult or something, they also receive similar sounding criticisms. So I can't help but think like there is sort of this parallel to be made there. And I just kind of want to hear more about your thoughts on that. [00:50:03] Speaker B: So in the early days when I was a facilitator, there were like break-off groups where the parents of or the facilitators would get together and support each other. Support groups. And even in the workshop that I took, there was this us against them kind of thing developing. People who were doing the research were looked at as people who were jealous somehow that, that the FC people had developed this new and revolutionary technique and you know, it was under their noses all the time. And you know, like we're persecuted because we're getting, you know, maybe exaggerating a little bit the tone at the time, but it was definitely an us against them. You know, like they don't want us to be doing this. That's why they're criticizing us. There's going to be bad news. The workshop that I took, the workshop leaders were like, there's going to be some bad press about facilitated communication coming out and don't listen to it because you know, we're just listen to us kind of thing. I think that was Prisoners of Silence. Little did I know that my case was going to be featured when I was sitting in the workshop, but get [00:51:26] Speaker A: thrust into the national spotlight. Wow. Geez. [00:51:30] Speaker B: Yeah. [00:51:31] Speaker A: What a ride. [00:51:31] Speaker B: What a ride. And it was there, but it wasn't. There's a militancy that's happened over the years. It's almost like FC kind of. It hit Its peak around 92, 93, 94. Prisoners of Silence came out in 93. There was a lot of bad press about FC during that time. So it went underground. And even the mid, like 2010, somewhere in there, 2007, I think the no touch forms of FC were starting. Like rapid prompting method came first. And so they started coming out but rebranded and with the criticism, they didn't stop and step back and say, maybe we need to look at this technique. Maybe there's something wrong with the technique. Flaw in the technique that keeps drawing criticism. But that's not how they internalize it. They're saying the people who are criticizing the technique of FC are criticizing people with disabilities and they don't want them to have their own voice. And so they personalized it. And then they got into these small groups and stopped looking at the evidence that was building. And then they came out with these new techniques and they're like, we're not doing FC anymore. We're doing. And it works because we say it works, you know, and so that, that. I don't know. I don't know enough about cults and how to label cults as cults to [00:53:17] Speaker A: say apparently there's not actually a good label anyway. So apparently. [00:53:20] Speaker B: Well, but I think that there are like use a term like high control, like in controlling information. I definitely think that's true. Like if. And. And I think maybe part of the reason why people don't like now don't like to do the testing is because they've seen what happens to people who do do the testing. You know, like, I'm using as an example of a bad facilitator in their workshops, you know, like. [00:53:48] Speaker A: Right. [00:53:48] Speaker B: And. [00:53:49] Speaker A: And which is so odd because you were trained by, like, one of the main trainers. Right, right. [00:53:54] Speaker B: The person who trained me took the first graduate course and facilitated communication in 1990 with Douglas Bicklin at Syracuse University. [00:54:05] Speaker A: That's so strange to me when a teacher is like, my student was actually bad. I thought they were good, but they're actually bad. Don't listen to them. That's very interesting. [00:54:14] Speaker B: Well, they always throw the facilitator under the bus. You know, they always do. You know, but then I think, like, Rosemary Crosley and eight of her trained facilitators had the first false allegations of abuse cases in Australia. So is she poorly trained? [00:54:30] Speaker A: Right. [00:54:30] Speaker B: You know? [00:54:31] Speaker A: Right. The actual creator is or whatever. [00:54:33] Speaker B: Yeah, like the actual Anna Stubblefield. I don't know if you know that story. [00:54:37] Speaker A: Yeah, yeah, yeah. That's the Netflix special. [00:54:39] Speaker B: Right? [00:54:39] Speaker A: That was the one that came out on that. Oh, man. [00:54:42] Speaker B: She was trained directly from Syracuse University, and her mother was one of the first generation facilitators. Was she poorly trained? You know, they always throw the facilitators under the bus. And I mean, that's another cult, like. Or control high control group behavior. [00:55:00] Speaker A: It's a. Don't listen to the people who left, basically. [00:55:03] Speaker B: Yeah. Which baffles me. You know, the facilitator. Somebody recently wanted me to write an essay about facilitators. And when I didn't end up doing it, but when I was thinking about it, there's a difference between the facilitators from my generation and the facilitators from now. Because there's a huge body of evidence against facilitated communication and showing that facilitators can and do control letter selection whether they mean to or not. [00:55:41] Speaker A: And we also have so much technology at our fingertips of, like, you don't even need a finger to communicate. [00:55:46] Speaker B: You don't. You don't. [00:55:47] Speaker A: Well, yeah, but you can be apraxic and communicate. You know, you can do all of that. [00:55:51] Speaker B: They're warping technology now, too. Like all the eye tracking, like the Jaswal studies coming out of University of Virginia. The facilitators are holding the letterboards while the person has an eye tracking thing on their head, you know, like. [00:56:06] Speaker A: Which I think is what's so crazy, because it's like, you could totally just prop that up if you're using eye tracking, like, you don't need someone to hold it that's the whole, that's the whole issue right there is that we can mount things. We have so many switches, we have so many ways to access things that it's. I guess there would have to be a little bit of a difference in the sense of like, you'd have to be able to ignore the fact that like you can put a speech or aging device on an iPad and have. And mount it somewhere and have easy access and, you know, it's just interesting. So what do you feel like are the bigger differences between like your generation and the. [00:56:41] Speaker B: Well, first of all, is information. I think it's true that in FC I had a professor friend who sent one of his students into one of the Syracuse University Workshop FC workshops a couple years ago. And they're similar. The training's actually very similar to the one that I went through. They talk a lot more about presuming confidence. It's almost like the guilt trip happens, like with more intensity than when I was a facilitator. Oh, really? [00:57:15] Speaker A: Like, like guilting people into. [00:57:17] Speaker B: Yeah. If you don't, if you don't presume competence, then you don't believe in. In. And you don't believe in facilitated communication. You don't believe in people with disabilities. That kind of. [00:57:27] Speaker A: Right. I have seen that online, actually, which is interesting to me because it's like that co opting of a term that presuming competence is affirming, but it sounds like they're using in a different way. They're not. [00:57:38] Speaker B: They're using it so that you don't have to test facilitated communication. Right. [00:57:43] Speaker A: Which is not really what presuming competence means. [00:57:45] Speaker B: No, not to me. [00:57:46] Speaker A: Because in my mind, presuming competence. Kind of back to what we were saying in the very beginning about how in my mind presuming competence is. Maybe they requested something and I got it wrong. Maybe I misunderstood. Maybe I'm. [00:57:57] Speaker B: Yeah, all right. [00:57:58] Speaker A: Like that's still a big piece. Is like how. And helping with like, they are free to correct me if I misunderstood. Yes, correct me, please. I want to get it right. I want to know what's actually going on in your head. That's what I'm doing when I'm producing competence. But that's not. [00:58:12] Speaker B: Yeah, if, if I'm not a speech clinician anymore or a pathologist anymore. But if I, if I was, I wouldn't. And I was going into a new situation, I wouldn't presume anything. I want, I would want to know what the person I would, I would give people. I believe that all People have the ability to learn something, you know, like at least something. Right. So that's. I'm going in with that. But I would also want to know what their strengths and weaknesses are so that I could target a training. [00:58:43] Speaker A: Yeah, you're still a teacher of some kind, right? You're still a. Yeah, like you're still there to help them learn something. That's your whole role as a clinician is. [00:58:52] Speaker B: Right. But that's not what happens with fc. Like presuming competence with FC means don't test, don't do the authorship testing. [00:58:59] Speaker A: Interesting, because I think that's the other thing. My understanding I might be wrong about this. So AAC specialist, just let me know. I have an email in the show notes. You can always let me know this. But I believe one of the origins of presuming competence, at least in the world of using AAC, was that people sort of did some gatekeeping keeping kids away from high tech. They would be like, oh, we need to start them on switchers because they're too quote unquote low. Like with a low functioning or whatever. They would sort of presume a cognitive inability to use a complex device. And in reality I kind of think it might have been more, at least from. This is a little bit of my own observation when I got out as a clinician, but I think it might have been more like the newer iPad type technology was intimidating to the older clinicians perhaps quite possibly. Especially with certain layouts if you're using. There are certain layouts where it's like that is the tricky one to learn. You have to put in your time, [00:59:55] Speaker B: it's more expensive or whatever. [00:59:57] Speaker A: Yeah, like as a clinician sometimes you have to put in some time to figure out like oh, that's how this is laid out. Okay, I think I get it now. But it would take a little time to figure that out. And so that's presuming competence became like don't assume that this non speaker can't access high tech. Like give them the best fit, give them the best device that gives them the most robust access to communication that they can grow into over time. That was. I agree with that idea of presuming competence. [01:00:27] Speaker B: Yeah, I agree with that. [01:00:28] Speaker A: So it's not originally even the term around like exactly whether or not the communication was accurate or not. It's really just literally give them access to the most access to a robust independent communication. That's what you want because you want them to be able to grow as an adult and get maximum vocabulary and all of that. So it is interesting that they're using presumed competence, but they've really changed the definition of it for themselves where it's like you only use this method. It's not about just testing out different methods, it's about just not testing at all. You use this method because this is the method that works. The end kind of a thing. Yeah, yeah, that is very. That is actually kind of the opposite of really what my understanding is using it in the aac. [01:01:12] Speaker B: That's interesting. Yeah, that makes sense to me. [01:01:14] Speaker A: Pretty interesting. [01:01:16] Speaker B: They kind of co op a lot of like they co op independent communication too. You know, the what they're doing is not independent communication. [01:01:24] Speaker A: It never seems to be without another person there. [01:01:27] Speaker B: And then they say, well, all communication is co. What is it? What's the term? [01:01:31] Speaker A: Cooperative or something or. [01:01:35] Speaker B: Yeah, just. [01:01:35] Speaker A: Yeah, collaborative. [01:01:36] Speaker B: You know, back and forth. You know, you give. There's a. There's a name for it. I'm not coming up with it but you know, it just means, you know, like our conversation. We're sort of listening to each other and feeding off each other and stuff. So that's what happened. They're saying that's what happens with FC2, but it isn't. [01:01:53] Speaker A: Well, not if you need the same person with you all the time. Yeah, that's what's so interesting because I'm like communication is two way. Absolutely. You need to send a message and have someone receive the message. And messages go back and forth, of course. But the whole point of independent communication, once again bringing it to the more human level of what all humans do, especially just any adult. You want to be able to go into a new job, you can communicate with people there, you've never met them, but you can communicate with them. Right. And you can go to a new town, you can make new friends, you can communicate with new people. And that's what independence is, is being able to just walk into any kind of environment and still actually communicate something that you need to communicate. Right. So. And then I always use the example with. When I'm working with like non speaking kids and I want the parents to understand, like multimodality. I used to always use the example of like being plopped in a foreign country where you don't know the language. Communication is what you would need to indicate you need some help. Right. Communication is like I can't speak the language, but I'm thirsty, I'm hungry, I need a bed, I need a place to be, maybe a phone. [01:03:01] Speaker B: Right. Like, Right. [01:03:03] Speaker A: Like that's what you do for Communication. That's not language, but that's communicating. And then language allows for more specific, like kind of robust, you know, philosophical ideals and all that sort of stuff. And describing why you like ice cream. Right. Like why it's your favorite flavor. Right. Like it's that kind of stuff. And that's why I think of multi. Multimodality communication, because technically we all are multimodality. We all use all of our stuff. But that is interesting to think of. That's what I thought was. So red flag is like, you can't say it's independent if the same person has to be there all the time. Now, you're very dependent on that one person. It's the same dependence as somebody with complex medical needs having to have a caregiver there for, like, going to the bathroom or getting a shower. Right. It's the same kind of reliance and dependency there. And I don't think, when I worked in the medical field, physical therapies and occupational therapists would not consider you independent if you still need the same person there to help you get in the shower every single time. [01:04:06] Speaker B: Right. Right. [01:04:07] Speaker A: It's like you can't. You have to independently access a shower in a hotel room, in your own home, in someone else's home. That's independent. That's not, you know, so. [01:04:18] Speaker B: Or their ability to spell, you know, like if the facilitator isn't. What happens when the facilitator isn't within auditory or physical range of the letterboard? They don't. They don't pick up the letterboard and start typing on their own. The facilitator controls access to the letterboard or the keyboard or whatever it is. [01:04:40] Speaker A: Interesting. So they don't have it all the time. They're not the ones who just carry it around on them. [01:04:44] Speaker B: They might, but they don't use it. They only use it to spell when the facilitator is present. I've seen videos where even on the telepathy tapes, there are people that can use a iPad to find their favorite movie or game on the. The, like YouTube or whatever, but all of a sudden they can't spell. They need support to point to letters. It doesn't make any sense to me. [01:05:15] Speaker A: Yeah. Like they have the fine motor to access an iPad and navigate it and do everything they can. Yeah, that is a good point. Especially with the arguments around. I know I've seen something about whole body apraxia being one of the arguments for meeting a person or something. And it's like. But if they can do there's somebody. [01:05:32] Speaker B: Larry Bissonnette is his name. He's an artist. He's been facilitated since 1992. And the argument is that he needs somebody to hold. They hold onto his. Like his shirt sleeve. It's when he needs support and somebody to hold the letterboard for him. Right. He's got a movie. They made a documentary about his art. He can paint. He can use a paintbrush by himself. He can use a saw. [01:06:02] Speaker A: Oh, wow. [01:06:03] Speaker B: He can use a hammer to nail in. He makes his own frames. He saws wood up and hammers it together and makes his own frames. [01:06:12] Speaker A: Sounds like he has better fine motor control than I do. [01:06:14] Speaker B: He can shave. Yeah, I know. [01:06:18] Speaker A: I always get scared I'm going to bang my thumb when I use a hammer. [01:06:21] Speaker B: He made coffee. He could make his own breakfast. You know, whatever. So my question is, why can't he point to letters on a letterboard? The other thing that happens with him is he can type out things with his facilitator there, but he can't read. He's got some verbal skills and some basic literacy skills. He can't read all of the words that he types out. It doesn't make sense that he's spelling all these words and he doesn't know what he's spelled. [01:06:48] Speaker A: Yeah, that is very interesting. [01:06:50] Speaker B: You know, and then they also have. In other videos, they have, the person is saying one thing and the facilitator is typing out and saying that he's saying something else. So at the same time, somebody's saying words and supposedly typing out something that's completely different. I don't know anybody that can do that. [01:07:12] Speaker A: That's very interesting. And I'm guessing it's like what you were saying where the typing supplants what was spoken. So you ignore the speaking and the typing is the actual message. [01:07:22] Speaker B: Correct. [01:07:24] Speaker A: That is interesting. I could keep talking with you forever about this. [01:07:29] Speaker B: I think we might have to do this again. Another episode. [01:07:32] Speaker A: I know. So fascinating. I might honestly just end up splitting this up into a couple of episodes. Just a part one, part two or something, because I think it's. [01:07:38] Speaker B: See what you get for feedback. [01:07:40] Speaker A: Exactly. But I did want to just make sure to talk about a little bit in terms of asking you, especially since you had to go through the process of you did facilitate communication, you did the training, and then you kind of removed yourself and started clicking in your brain that something's up. And now you're this fantastic advocate, which. Thank you so much for everything you do. It's so incredibly important. And so I think very meaningful to hear from someone who's been through that. And I think it takes a lot of self awareness and a lot of courage and a lot of. Obviously, I can only imagine how much mental health type work it would take. [01:08:26] Speaker B: It still gets me at times like 30 years later, you know, like when I really think about it. Yeah, it was really hard. What was really strange was that when like after the testing, by the time we, by before I left the testing room, there were people on staff that knew that the testing had failed. I didn't know the testing had failed officially. I felt crappy about it. But nobody debriefed me. Nobody ever debriefed me from the school. [01:09:01] Speaker A: Oh my gosh. Wow. [01:09:02] Speaker B: They just said you can't work with a student anymore. And you know, the testing failed. That's it. [01:09:09] Speaker A: And that's it. [01:09:09] Speaker B: Nobody debriefed me. [01:09:11] Speaker A: Wow. [01:09:11] Speaker B: I talked with the special ed director a little bit and we decided that to drop facilitated communication from the school district at that time. And I've just learned recently that spelling to communicate is being reintroduced into the main school. So I'm like, that's a project I'm doing right now. So it was really hard. And it didn't like intellectually from the testing. Like I said, I had those breakthrough moments, but that stuff doesn't stick. Like right away there was this window of time where I could have just as easily gone back to the university and taken more training. [01:09:57] Speaker A: You might have thought it was more you. [01:10:00] Speaker B: Maybe I was the bad facilitator because that was coming from everybody. Critics of FC and proponents of FC were all looking at me saying, you're the bad facilitator. I'm getting it from every direction. It was confusing to me. I didn't mean to hurt people, but that's what I did with my actions. So I'm like, the other thing is I had taken the facilitated communication workshop at the University of Maine. So like, and I had this big faith in. And I still do in a way, but in universities, right? [01:10:39] Speaker A: Like, right. It seems legitimate. [01:10:41] Speaker B: Surely they would have vetted this. So like everything, everything was under question. It was crushing. Like it was. My response was I left teaching. I spent a lot of time not talking about it. But then in 2012, Howard Shane kept in touch with me, thank goodness, answered my questions. Like I would call him up crying on the phone and he would just like drop what he was doing and talk to me for hours. [01:11:12] Speaker A: Oh, wow, that's really great. [01:11:14] Speaker B: Like over the years, like emails and like I have a lot. And he's like one of the most demonized. From the. The FC perspective, he's one of the most demonized. It's tearing me up. He's one of the most demonized people. And he was so compassionate during the testing. That was the other thing. Facilitators aren't supposed to test because the testing was going to be really adversarial. He was respectful. He wasn't adversarial. He was kind. He was gentle. He was respectful. So in my head I'm like, these things are. There was this competing cognitive bias, these competing things. And the FC people did me a favor because they demonized me. They would not talk to me. [01:12:01] Speaker A: They just kicked you right out of the community. Yeah. [01:12:04] Speaker B: So I got pushed into the scientific part of it, the critical part of it. Even John Palferman, one of the few reporters I trust, sat and talked with me about it. Asked me like, really gentle questions like, huh, you know, he didn't. He wasn't confrontational, but like, how is it that you believed that, you know, and did you know that these other studies have been done and things like that? So I think I was caught in this. Thankfully caught in this window of time where I was open to hearing evidence that went against my belief system. And frankly, it made more sense than what I learned in the FC workshop. It didn't make sense to me, what they were saying. And with the testing, I think combined with going through the testing. [01:12:59] Speaker A: Right. And having that doubt. Yeah. [01:13:01] Speaker B: That's why I'm such an advocate for testing. Almost every blog post I get that in there, like, please do the testing reliably. Control test. So you can feel for yourself what it's like to be in that situation. [01:13:13] Speaker A: Yeah. And then they say, nope, that's unethical. Don't do it. [01:13:16] Speaker B: Right, right. [01:13:17] Speaker A: And then it's like, well, that's a protective. I guess. But yeah, that is interesting. That is actually, at least from some of what I know of high control groups. That is something that also happens a lot where once somebody leaves the group, they become vilified and they lose. They get so chastised by the community. And that's often what keeps other people in the community, is the fear of losing the community you've developed. [01:13:41] Speaker B: Yes. [01:13:42] Speaker A: So you kind of became like the. In a way, the martyr. That sort of probably helped to keep some people in, in a way to, like, at least to some. Some folks and that. Yeah. I mean, they will vilify other people. And then, you know, you might find that the People that they vilified are the ones who are actually like, I'm open to talking. And like, yeah, amazing meeting someone with compassion, right? [01:14:03] Speaker B: Yeah. Howard's not the only one. Like, people I wrote. I wrote an article about my experience in 2012 because there was another false allegations of abuse case that was similar to mine. And I'd been out of it, out of teaching and out of FC for quite a while. And there was a 2020. What was her name? Alice Gaunt. I even remember her. Like, the reporter got my phone number or email or something the night that the 2020 was going to air, that was talking about this, comparing the case I was involved with with this new one that was in 2012, right? And she said to me, I'm going to talk about this whether you say anything or not. Like, really aggressive the day, like, it's airing tonight. And she emailed me like two hours before the thing for a comment. [01:15:00] Speaker A: Oh, my God. I probably wouldn't have even gotten the email. [01:15:02] Speaker B: Well, yeah, well, you know, like, yeah, y. [01:15:05] Speaker A: God. [01:15:06] Speaker B: Anyway, and I talked to her and I said, you know, FC, it doesn't work. You know, it doesn't work. But then she went on and did her thing. And then. So after that, I was like, all right, look, if people are gonna. By then, I was clear in my head that FC didn't work. Like, my emotions had caught up with my intellect, right? I'd seen Prisoners of Silence. I'd seen how other people had gone through the same kind of testing that I went through and had the same results. It wasn't just me. Other people that were trained from Syracuse University. There was a part of me that was like, well, I trained at UMaine. Maybe the Syracuse people were better trained than I. You know, all those things you're trying to, like, figuring out Syracuse, the Syracuse trained facilitators went through the same testing I did and came up with the same exact results. And I'm like, okay, so this doesn't work. Like, that's when. That's when my intellect caught up with the emotion is like, this doesn't work. It doesn't work. [01:16:19] Speaker A: It's not just you, not just me. [01:16:20] Speaker B: It's actually like, these other people. It doesn't work. And then from then I just went on this like, all right, if. If reporters are going to call me. Because I. By then I was like, pretty much the only. The ODHAC people moved on and retired and whatever. They're not speaking out. I think I'm the only facilitator now that speaks out publicly against FC. There are others in the background doing their own thing, like on a personal level, which is great. I say anything helps, like, tell your story. You don't have to tell it on the world stage. Tell it, tell it to the people that you're involved with, to your school. [01:17:00] Speaker A: So not everybody wants the national attention or the world attention or should, you [01:17:05] Speaker B: know, I was just like, if. I don't even want to. But I decided that if my name is going to be associated with facilitated communication, then I'm going to speak out against it. And my name is. Unfortunately, I get emails from people in different countries and stuff. I'm like, yeah, I've read your articles. I'm like, really? [01:17:26] Speaker A: Like, wow. [01:17:27] Speaker B: Really, like, wow. [01:17:28] Speaker A: You're the name they found. [01:17:29] Speaker B: All right. [01:17:30] Speaker A: You know what I mean? [01:17:30] Speaker B: It's like, I didn't ask for this, but since, since people are calling me, I'm going to do everything I can to learn about facilitated communication. And so that's. That's so, like, over time that, that, you know, it's still personal to me, but I've gone beyond in some way. In most ways, I've gone beyond. And me, the reason why I spoke out at first was guilt, right? [01:17:59] Speaker A: Yes. [01:17:59] Speaker B: I caused this problem and I need to try to fix it the best I can by saying I made a mistake. That's the first thing. You know, like these facilitators that get sued and stuff, you know, like, it's because you don't apologize. Like, I dodged, you know, like, the family that I worked with also believed in fc. But when, as soon as I knew that it didn't work, I said to them, I am so sorry. I am so sorry. [01:18:26] Speaker A: Like, you didn't know either. [01:18:28] Speaker B: And that's what they wanted to hear, [01:18:30] Speaker A: you know, like, it's that humility of just recognizing you're a flawed person who just. Yeah, like, that happens. Some people don't have malicious intent. It's just. I thought it worked. I thought it would be a good idea. And, you know, or. Yeah. [01:18:45] Speaker B: And I think, I mean, the pushback is harsh. I mean, the criticism also from. Especially at first, not so much now. I think I've sort of earned my place in the critic world, you know, like. But they had to test me first. [01:19:00] Speaker A: You got your stripes. [01:19:01] Speaker B: Yeah, but the criticism was really harsh at first. And I think that we need to change that as well. We need to say to these facilitators, let me qualify that a little bit. I feel a little bit differently about the academics who should know better, who are still promoting facilitated communication in any of its forms. They should be doing the testing. The rank and file. I'm talking now to the rank and file facilitators. It's not your fault to get involved in this. You know, it's compelling and you want. Most people come from a place of compassion. And so us on the outside that are looking in need to make it so that facilitators can say, I made a mistake. You know, I'm willing to look at the testing, I'm willing to look at the evidence. You know, I made a mistake. I really wanted this to work. I really did. I really wanted to help my child, but it doesn't, you know, and I made a mistake. But that's not the feeling, you know, like, I've been involved behind. I'm much more comfortable behind the scenes than up front. But slowly over the years, we've developed not just me, but I'm sort of. Somebody called me the queen bee today. I'm kind of like, I know all these people because they've touched base with me. So I have people who are currently being accused, falsely accused of abuse through spelling to communicate. They've emailed me and I've been able to connect them with people. So there's a network now. Before there were people speaking out, but there were ones and twos across the world. And now we're sort of trying to bring people together, build a bit more. [01:20:57] Speaker A: It's like a new generation of people who need to come out. [01:21:00] Speaker B: Yeah. And from all what, like psychologists, people who work directly with autism, autism researchers, speech and language pathologists, parent, you know, like, you know, parents that are against facilitated communication. Facilitators. Not very many of us, but there's some facilitators that, you know, have moved towards the scientific side of facilitated communication. All working together, you know, all bringing different perspectives. I've learned so much from. From people that have skills that I don't have. You know, like, I have this experience that may be unique in the fact that I was a believer and now I'm not a believer. But. But other people need to fill in that story. Like, there's a whole. I feel like there's a whole story that not that needs to be told. Needs to be told by the people that have been victimized. It needs to be told by people who have ways to, you know, who have access to augmentative and alternative communication. Things that I've learned along the way that I didn't know. You know, like all of it needs to be. We all need to be working together. [01:22:16] Speaker A: Yeah. And that's what's so concerning from the ethical standpoint as a future language pathologist is the idea that we do need, if there's any child who is now an adult who has been through FC and maybe has actual independent access, if they could talk about their situation. But they need independent access in order to tell us about their experiences. And that's what becomes so difficult if you couch this so firmly in this one person is the one panacea that allows them to communicate and therefore you can never talk to them without that person there. That's giving that person a whole lot of power in the situation. Because once you take away communication from someone, they've lost pretty much all power to really have any kind of autonomy in their life, you know. And I can see also, like, I guess for myself, speaking out to any new clinicians or any potential clinicians out there who are curious about it because they're using certain terms that sound good, you know, sounds great, sounds good, you know. And I know it can feel, when you're working with non speaking students, especially in schools and such, it can feel like, like you can definitely hit these walls where you feel like they're not communicating, they're not using their device as much as I would like them to, they're not making progress the way I want. And I think it's really easy as a clinician to look at yourself and think, I must be failing this client somehow. Like I'm not. There's something I'm missing and I'm not quite getting them the access I want them to have. And I think I could see that making this type of technique, the FC type of whatever it may be, whichever one people are leaning toward, I could see that being appealing, that there is potentially this one technique that will open up this child and they will talk with everybody and it'll be amazing. And it's just because I would like to think that the evidence would stand for itself and I think for many clinicians it does. But I do think there are clinicians where it's like, well, especially neurodivergent affirming thing is kind of new and like maybe the old evidence was more based in bias. Da da da da da. Right, right. There's kind of probably so many ways to question it with the evidence that I don't know for myself. I just keep coming down to independent communication means you can do it with strangers, you don't have to know the people in the room. You can still communicate, you can walk into any restaurant, you've never been there before, you can order. You don't need somebody with you to be the one to order or to be sitting there touching your shirt so you can order, or whipping out the board, that a communicator should be able to do that themselves just like any other person. So I always think instead of maybe looking for that specific little strategy, that might be the answer that actually, actually makes progress for this one kid, I guess, from the trauma informed perspective, I think maybe we should just back up and go a little more meta and think more of that human. Are they motivated to communicate with people that are around them? Do those people actually believe their protest if they ask for a break? Do they get a break? If they're in a classroom where people, as they would call them, physically redirect, if they grab them and move them places and it's dysregulating, why would they want to try to communicate with those staff members? You know, if they say like, please don't do that, and the staff members do it anyway, it wouldn't be surprising to me that they just wouldn't want to. And so I do think there's a lot of room where people still need to work on understanding, like, what is the motivation for this kid to communicate? And like, I usually would take with kids who didn't want to use their device with me or didn't really want to communicate with me, like, especially new, new students, you know, especially in high school if they don't know me or whatever. [01:26:21] Speaker B: Right. You're not my speech. I get it. Yeah. Yeah. [01:26:23] Speaker A: You know, I get it. I'm the new person. I know a lot of times I would just start with, like, trying to learn their likes and dislikes. I just want to know, like, what's your favorite food? What do you like about pizza? I like really cheesy pizza. You like really cheesy pizza or you like the pepperoni? What do you, you know, what's the part? [01:26:41] Speaker B: Right. [01:26:41] Speaker A: And I just want to connect with him more of that human level. [01:26:44] Speaker B: Sure. [01:26:45] Speaker A: Because I want to demonstrate that communication is not just about me telling you what to hit, what buttons to hit. It's not just me telling you what to say. It's like, I want to learn who you are as a person and what your needs are. And so I guess, I don't know, my hope would be from this episode and everything that maybe people can just, instead of thinking down this, this path of like, oh, this looks like the answer, maybe just actually take a step back and be like maybe I should just approach these kids as kids and just as people and maybe don't focus as much on a device if they're not using it. Maybe look for other communication, multimodality, whatever else they're doing to show you things. And maybe if you can show that you're a safe person in the sense that you're trying to take their perspective, you're curious about knowing them as a person, you're curious about meeting where they are and giving them what they need, maybe then they'll start to communicate more instead of needing just the right board. Because I think that is. It is tricky nowadays. I think with evidence, when it comes to research and science, with the changing paradigms, it gets a little tricky because science is a little behind things that make autistics different versus disorder. Right. Like deficit based versus holistic, et cetera, et cetera. [01:28:12] Speaker B: Sure. [01:28:13] Speaker A: But when it comes to communication, I feel like we still have some pretty solid evidence against like a lot of human psychological complexity happening with fc. But that doesn't mean it's independent communication. It doesn't mean it's the answer. [01:28:26] Speaker B: Right? Right. I guess in my ideal world, I'd like people to take, take the top hundred, whatever the touch base spelling to communicate, rapid prompting method, speller's method, and do the authorship testing and just see what happened. That would put a lot of this to rest. The telepathy stuff too, I think would be solved. Not the testing that the telepathy tapes people are doing, but real, reliably controlled testing. And it doesn't have to be like mine was done with pictures and folders. Yeah, right. It's. It doesn't have to be this big, complicated, scary, you know, all of that, it's a, it's. All of that's a myth. [01:29:18] Speaker A: But thank you so much. I admire you so much for all the work you're doing, especially since it was thrust upon you. [01:29:24] Speaker B: It was thrust upon me. [01:29:25] Speaker A: You met the moment, though. [01:29:26] Speaker B: I did, I did. Reluctantly. [01:29:29] Speaker A: Impressive. [01:29:30] Speaker B: Kicking and screaming all the way. [01:29:34] Speaker A: I don't know. Sometimes those people make the best advocates because they really. You clearly are very passionate about it, which is, you know, very important and wonderful. And I still very much admire anyone who's ever been able to face that they're wrong and make changes. That's just an astounding amount of strength and courage. Yeah. [01:29:56] Speaker B: Well, I'm fortunate that I had a lot of people helping me along the way too, so I am very grateful for that. Yeah. [01:30:03] Speaker A: So anybody who's questioning, they can probably email you yes. Contact you or check out your website? [01:30:09] Speaker B: Yes. Through. You can contact me through the contact form on facilitatedcommunication.org that's our website. [01:30:17] Speaker A: Excellent. [01:30:18] Speaker B: All right. [01:30:18] Speaker A: And there is a ton of great information because I ran into it when I was doing my little research and deep dive and yeah, it's great, great information on there. [01:30:26] Speaker B: There's a lot of reading material on there for people to that one if you want to deep dive. [01:30:34] Speaker A: Yeah, yeah, yeah. And. And the evidence that's out there and everything. So that's wonderful. Thank you so much and thank you all for listening till the end here. Thanks for sticking it out it. Like I said in the beginning, if you want to hear more of our conversation, you can head over to my Patreon page and access, access that for free. I'm going to try to post it within a week. I'm not going to do quite as much editing, so I think I might even just put it up kind of as is to start out with and can refine it later and replace the file. But yeah, head on over there. I'll be sure to leave it open so that people can do more discussions. I believe you'll be able to do comments and discussions if I just make the entire thing publicly accessible. And if any of this brought up any upsetting emotions for you, please do take a time, take deep breaths, go find something that brings you some joy or something that's, you know, funny, light-hearted, something like that. Just give yourself a little emotional rest here. That's totally fine. And even in really trying times, it's also still very important for us to experience some level of happiness and joy because those are essential parts of our human experience. [01:31:47] Speaker A: So head on out there and do what you can to take care of yourselves. And thank you so much for listening once again and until next time, everybody, bye.