Facilitated Communication: Navigating the Controversy

On Season 11, Episode 10 of The LowDOWN: A Down Syndrome Podcast, Cassandra Cowie gives us the lowdown on facilitated communication.

Transcript

Thanks, Danielle. Today we're stepping into a topic that's complex, controversial, and deeply personal. For many, that topic is facilitated communication. It's a method that has sparked passionate debate for several decades now praised by some families as life changing and questioned by most professionals as lacking in scientific evidence and support, as well as being potentially harmful. But this episode isn't just about facilitated communication. It's really about the broader, often messy space where evidence based practice meets the broader community and the range of needs and backgrounds that are there. This is a conversation about what happens when lived reality and clinical research don't always align and how, as do we as therapists, support families who don't feel satisfied by the supports that are available and turn to things that aren't backed by research. And today, joining us, we have Cassie Belanger to discuss this topic. She's an SLP here in our clinic. Yeah, and we're so happy to welcome Cassy to the podcast. She has studied psychology at the University of British Columbia before completing her master's degree in speech language pathology at McGill University. While at McGill, she provided intensive speech treatment for teens with down syndrome and childhood apraxia of speech. During this particular experience, she became eager to work with this population, and prior to joining the DSRF, Cassy worked as an autism consultant for pop art, where the motive where she motivated and trained educators to better support individuals with autism in the school setting. Cassy, welcome to the lowdown. Thank you for joining us. Thank you so much. I'm so happy to be here. Yeah, we're so happy to have you. Um, okay, so, Cassy, you may or may not know. In the grand tradition of the lowdown, we like to start our podcast off with some fun, secret questions so that our audience can get to know you as a person, not just as an SLP. Okay, there are fun ones, I promise. No math involved. Um, okay. Question number one. Who would 12 year old you say is their hero? So, oh, 12 year old me. Um, probably a Spice Girl. Yeah. That generation. Yeah, I think, I think Ginger spice. Um, I was just going to say. Okay. Ginger. Yeah, yeah, yeah. I'll have to go with that. Oh. That's awesome. Um, okay, if you have a free day, would you be more inclined to relax or go out and find an adventure? Oh, man. Um, I probably relax now that I have kids. If the choice was given to me to put my feet up for a day, I'm gonna take it for sure. Yeah. I feel like with kids, every day is an adventure anyway, so. Exactly. Relax. Yeah, it's already built in, so. for sure. Um, okay. And our last question is, what's your go to karaoke song? Oh my goodness. This is hilarious because it's a continual joke of my husband that he wants to do karaoke with me. Oh, okay. And, uh, we never get around to it. Um, but, uh, probably something rap, like 50 Cent or Usher. No way. I love that. I like trying to keep up with the pace of a rap song. It's. It's like a real challenge. So what's a challenge you've changed since your Spice Girl days? Yeah, I see that. Still, still a lot of 90s stuff. But I was just going to say it's a 90s thing because you kind of have to like both ends of the spectrum if you're a 90s kid, so I totally get it. Yeah. I also love the SLP in you. That's like, oh, I like the pace of rap. I'm like, I'm sure there's an SLP component to SLP challenge my oral mechanism. Keep up. Yeah. Awesome. Um, okay, so let's dive into this topic again. So full disclosure coming into this as an occupational therapist, I'm very excited to learn from you two fabulous speech language pathologists about this topic. Let's start by defining communicative autonomy. So what is it and why is it the goal for all of the individuals that we see in our clinic? Um, because obviously it's not a term that we often use in sessions, but it is kind of a, you know, in the category of medical jargon. Um, but again, this is the broadest, you know, goal that we have for our students. So can you talk a little bit about communicative autonomy? Absolutely. Yeah. I mean, the the goal that we all have as speech therapists is to give the individuals we work with, um, a voice that actually represents their voice and the things they want to communicate about. So, um, the definition is really just that they are the author of the message, the true author of the message. Um, and the things they might want to communicate about might be very silly or weird, or maybe even things that we don't like, but it's important that, uh, yeah, individuals with disabilities and anyone can can communicate about their own preferences and likes and dislikes and even weird, silly ideas. Um, but yeah, we just want, uh, the individual to be the author of the message. Mhm. And this is so critical and something that we go over a lot in sessions that communication autonomy is not the same as compliance. So for example we are not sad if a student doesn't want to do what we've planned. I mean sometimes we're a little bit sad because we spend a lot of time on it, but that's a different problem. Um, if somebody says, no, I don't want to do that or I don't like what you planned, we're actually like, yes, good job. Great. You know, autonomy, good advocacy for yourself, great communication. And that's their voice. Their voice does not mean agreeing to everything that we suggest. Yeah, yeah, for sure. And even if, you know things are said that might seem off topic or even inappropriate, um, it's still something that they might have wanted to communicate about. And it's important that we know, hey, that was their message. We can figure out how we might want to respond to that. Um, and that that's another story. But it's important that, uh, we know the message is theirs. Yeah. It's like, equally valid and valued, right? No matter what the message is, it's their ability and want to share the message. That's the important part. Yeah, even poo jokes. I'm just putting it out there. Yeah. You know. Yeah, yeah, that's what we're talking about. It's really like exactly their authorship and their, you know, self-expression. Um, let's proceed here to defining facilitated communication. There is the chance that people haven't heard of this. It's big in SLP world, but probably not as huge in the general public. There are many methods that fall under that umbrella, so let's just start with defining it broadly and then we'll list some. Sure. Yeah. So facilitated communication, um, it's a technique that appeared in the US and Canada in the 90s. It was a technique brought over from Australia, from an educator there. Um, and the technique involves using some kind of letter board and, uh, there's a facilitator, so another adult who's helping the individual communicate by pointing to the letters, um, and they're helping by facilitating the movement of the arm, uh, sometimes at the, the shoulder or elbow or wrist, or they might just be holding the letter board and moving the letter board. But there's some kind of assistance. The original method, the assistance was generally always with the arm or the hand, and later methods it was more the letter board. Um, but yeah, the individual is typing out their messages by pointing to the letters, and there's pretty much a constant point of contact from the facilitator to help them point to the letters as they write their message. Mhm. And so I think there's an opportunity here to be very, very clear because people might hear this and be like isn't that what SLP is. No, it's not what SLP is. So when we work with somebody with an AAC device, we do not touch people. We do not hold people's arms, we do not hold the device. The device is on a table and the person has free use of their own arms, which includes if they don't want to say anything, um, then we don't make anybody move or point or say anything. Um, there are several methods that fall under the facilitated communication umbrella, however, and people might have heard of these things. So one was just called facilitated communication. Another was called rapid Rapid prompting method that was really popular in like the early 20 tens. I want to say. Yeah. Um, and then spelled to communicate, which is having a moment right now. Um, and the telepathy tapes, having a moment right now. And in general, people might not name any of those, but still be holding their person's arm or hand or device, and all of that is in the same group. Yeah. Would you add, did I forget any in there? No. Uh, assisted typing and supported typing are two that you might hear as well. Um, yeah. And just to add to your comment about, you know, us as SLPs when we're teaching how to use an AEC, there is certainly a period where we might be modeling Killing even more generally. We're showing with our own model of how to, you know, say point to a button or letters, depending on if they're what their system looks like. Yep. Um, but the goal always is that prompts are decreased and you're working towards some level of independence. But modeling is never, uh, you know, a problematic strategy. Um, because the. Yeah, it's a way of teaching that all teachers use. Um, but the. Yeah, the the problem, the main problem was facilitated communication is this, this constant cueing of an individual's arm, uh, or moving the board, which seems to be a more subtle way. Um, but it definitely still has an impact on the message. And, um, yeah, it really takes away the, the confidence. And as we'll talk about more studies seem to suggest it's not the individual's message. Message. Yeah. Um, excellent. Well defined. We have one more definition before we proceed in this conversation, just so that we have working definitions for everybody. And that is, um, defining pseudoscience. So facilitated communication falls into this group of pseudoscience. So we're going to define it here and provide some other examples so that people are with us as we continue. Yeah. Um, so pseudoscience has, you know, science in the name because there can be a lot of features of it that resemble science. Um, there's actually I was looking at a spelling to communicate website that someone's running right now promoting their services, and there's a lot of, um, kind of jargon or scientific language that's actually used to make it, you know, appear that there's something scientific behind the method. Um, and there's a lot of, uh, what is portrayed as strong evidence, which is usually in the form of testimonials or heartfelt messages. But when you're looking at it, it's certainly portrayed to the viewer as having strong evidence because rigorous study. Yeah. Yeah. And that there is yeah, some scientific backing behind it. So it's sold as that. But then when you dig a little deeper, there hasn't actually been um, the scientific method, uh, adequately used to assess its validity. And that's the main difference. Mhm. And science crucially is falsifiable. So it there's a hypothesis you will remember from grade school that you prove right or wrong. Yeah. And in pseudoscience it's not falsifiable, so they're only looking for data that supports the findings and ignoring data if there is any, that doesn't support those findings. And science also uses a process of peer review. And if you're a nerd and a scientist, these people are vicious. Like they really pick apart each other's studies and look for inconsistencies in how the experiment was set up. And that does not happen in pseudoscience. Yeah. So there's. And yeah, so there's peer review. Science changes over time. Yeah. Pseudoscience does not change over time. People who criticize pseudoscience are often kind of labeled as. Or I don't I don't even know how I would define it. They're kind of told that they're what would what word could we give to that? I don't even know. Yeah. Not valid or like. Yeah. Yes. Or as a conspiracy. Yeah yeah yeah. Seeing criticism as a conspiracy is maybe how we could define that one. Yeah. Um, so all of those are features in pseudoscience. Yeah. Um, as as therapists, we have this shared duty and responsibility to be very conscious information consumers. Um, we have to acknowledge that there is a very big gap between public scientific literature, which is full of data and jargon, just like pseudoscience, um, and very formal language and the like. Everyday consumer and scientific articles aren't actually really intended for the everyday consumer, which means the onus of like review and interpretation and recommendations from the scientific literature falls on that in-between person, which is the therapist. Yeah. And we have an ethical duty, and it has a fancy name. Of course, it's called epistemic duty to be a knowledge expert, and also to question our beliefs and be on the lookout for misconceptions. And there are, I think, more efforts now to make sure that the scientific communication community participates more in popular media and expands beyond medical journals. And actually, this podcast is one of those efforts in knowledge translation. Um, and while this is an effort to provide accessible information, it can also be a challenge then to figure out who's legitimate in their claims and who's not. If everybody's on YouTube or if everybody's on the same kind of social media platforms, who are you supposed to believe or not? And we recognize that is a big challenge. Mhm. Yeah. Yeah. I the thing is go ahead. I was just going to say no, I was just going to say like you know, and the thing is that this, this Rigorous, um, the fact that we need to stick to science, that this isn't just an ot SLP thing, this is in the medical field. This is in corporate research. This is in, you know, so many different industries where we have to look at what the evidence is saying and, you know, be critical thinkers. And of course, as therapists, we've been taught how to be critical thinkers. And some people have not been taught how to critically analyze an article or a headline. Right. So so we understand that we're coming at it from a place of being trained in that, in thinking critically and not everybody else. But it doesn't mean that you also believe right away what you read. Right? You have to kind of think about and it's not. Yeah. And it goes across a variety of different industries and fields. It's not just us saying it with respect to our profession. So it is it's a very widely held belief. Yeah. Yeah, I felt psychology. It's a great, um, field to study the scientific method because in psychology it's kind of easy to fall for a lot of pseudoscientific ideas. They often fall in the domain of psychology. Um, so being able to conduct experiments that, as Marla, you said, are falsifiable and that you would be observable. Yeah. Yeah. Yeah. Have a hypothesis at the start. There's some kind of control group. Um, and ideally, uh, the study would be blind or double blind so that the, the researchers or experimenters aren't, you know, sure exactly who was in what condition. And ultimately, this is what these were, the types of studies that ended up being, uh, used to assess the credibility of facilitated communication. And there was an overwhelming result in the end. I don't know if you want me to dive into that now or if we're moving there. We're moving towards risks and results. Yeah, yeah. Okay. Sounds good. But yeah, the the, the scientific method has, uh, given a clear indication of what we should all believe, which is why there is a unanimous, uh, academic and scientific and professional statement and opinion against facilitated communication now. Mhm. Mhm. And we can talk a little bit about what those experiments looked like. Yeah. Um, in one of the very famous scientific studies of facilitated communication, they had a different person as the facilitator who did not see. Well, there's two different experiments. One, they had a different person who was supposed to facilitate a user in saying things, and it did not work. Um, so then but then there was some criticism to that that stated, well, the rapport or the bond between facilitator and individual is essential. Mhm. So there was another study done where the individual, in our case individual with down syndrome. But in this research, individual with autism, um, saw a card with a picture on it and the facilitator did not, and the person was not able to type out the word that was on the card at any time. If the facilitator saw a different card, the individual typed out what the facilitator saw, even if they didn't see it right or if they saw and they did, you know, many iterations, they saw the same card, each person saw a different card. And regardless what the facilitator saw was what was typed. Um, and at this time, there are some good documentaries about this. At this time, this was shocking information to the facilitators, who themselves truly believed that they were facilitating that person's own voice. And, you know, they did not come into this with malintent necessarily at all. They really did believe that they were there to be helping. Um, and it caused a lot of upset. A lot. Yeah. Yeah. I'm glad you brought this person up. Yeah. So Janice Boynton, she's actually a kind of anti advocate now. And, um, shares information on her website about where you might see it coming up because she, you know, went to all of the professional development. She became a facilitator. She did all the training. And she believed so wholeheartedly in this method. And I think that it's important when we're learning about the facilitators to understand how much of this is subconscious. And I think that's why it was so hard for people who were advocates of this at the time to accept this new information coming out, because in their mind, it just seemed so unbelievable that they could be cueing the individual when they had They? There was no conscious feeling that they were doing that. Um, but Janice was wise enough to look at that data in the studies that she participated in, which demonstrated that 100% of the facilitated messages were only what she saw. If if it was different from what the user had seen. Um, so there was just no other way to face that data. Um, and I think it was it's very yeah, humble of her to come forward and be honest about her experience. Um, but it speaks a lot about how subtle these effects are. Um, and one other kind of scientific, uh, terminology or term, I guess we would say for that is the clever Hans effect. I don't know if you've heard of of this, but this was a A clever Hans was a horse in Germany in the early 1900s, and there was a psychologist doing experiments with this horse, and he was convinced that the horse could do math. And the psychologist truly thought that the horse learned how to do equations. But then I think the psychologist, uh, they had a different person present the equations to the horse, and the horse couldn't actually do the equations. And it was discovered that the horse had just become extremely adept at, uh, understanding and responding to the subtle body language and cues of the psychologist. Um, there was kind of a tensing up as the horse tapped, uh, closer to the correct answer. As he landed on it, the psychologist body relaxed, and that's when he knew to stop, and everyone thought, this is amazing. But the point is, you know not to, I think, diminish how complex all of this can actually be. But just to say that this subtle body language and cueing can be done in so many different ways. And I think a lot of our students who are minimally speaking or non-speaking, they actually end up having a very strong skill in reading body language and being really sensitive to the individuals around them that I actually, I do think this is a strength of theirs. Um, and, and that, yeah, we have to be very cognizant of, of, uh, how our cueing can impact them and just understand that if, if you're using facilitated communication, the data shows that that level of cueing could change the message so that it's not actually theirs. Yeah, it's about the like the interpretation of the cueing too. Right. And I'm glad you brought that up, Cassie, that, you know, our students are very attuned to, you know, small, subtle differences in tone and in body language and expression. So for those that group of people, we need to be even more careful about how those things can be interpreted, um, especially with respect to facilitated communications. Yeah. Are there other risks in this in the in this area, facilitate facilitated communication that you can kind of talk to our listeners about? Yeah, definitely. I mean, I think, uh, at a fundamental level, the dignity of the person and their individuality and being able to communicate about what they want to communicate about. And I'll touch on this briefly. I think when you watch videos of the 90s and the conferences and the presentations showing facilitated communication, there's kind of one big theme about the content of the messages being shared. And it's kind of this very deep, philosophical, um, message about being trapped in one's body and how facilitated communication has saved them, and they finally have a voice now, and they're finally out of their body. And this is a beautiful idea. Um, the data would suggest that this isn't actually the message they were sharing, that it was kind of the idea that the facilitators had of what their role was in helping this individual. But when we work with individuals with their AAC device, we my experience is that I hear them communicating about the foods they like and the shows they want to watch, and that they want their iPad and that to watch a show or just kind of topics maybe, you know, as Marla, you said, potty jokes. Um, you know, I one of my clients, frozen, is kind of her preferred conversation topic on on her iPad, on her AAC device. And we'd expect to see more of these personal preferences that actually reflect. Yeah, the individuality of that of that person. So one risk is just that. I mean, yeah, you're not hearing the the message and the ideas and the preferences of that, of that individual, even if it's not some, you know, deep philosophical poem, you know, about, about disability or social justice. Um, and then there are that's one risk but another big risk that came up. And actually it was the reason all of these studies were conducted was there was, you know, a high number of allegations of sexual abuse, uh, facilitators who were, you know, facilitating an individual's message. Um, I don't know exactly the number off the top of my head, but I believe it's at least 30 lawsuits, um, where, uh, occurred because messages were created about instances of sexual abuse, which is really serious, obviously. Families were broken apart, kids were taken out of their homes. And Janice Boynton, the facilitator, we just spoke about the reason those studies were conducted because she had facilitated one of those messages and truly believed that this individual was being assaulted by, I believe it was her father. Um, and it was just a dreadful thing for the whole family to go through. And, and, you know, it's that is its own risk. That's just terrible. And it's, it's one of the reasons that all these rigorous experiments were done. Um, but yeah, then and then a last risk would be that time is spent on a therapy technique that isn't effective when other techniques could be used. Um, you know, teaching someone how to use an their AEC. Um, it does take a while and it takes a lot of practice and exposure and time and parent involvement. And it isn't, you know, a magic trick, which sometimes is the way facilitated communication can be presented and sold as, as something that occurs really quickly. But so, I mean, this important time that needs to be spent to actually work on and find a communication technique that fits that individual. Um, is is being, um, not taken advantage of. So that would be another risk. Um, and I think I would add to that too, um, cost there's a, there's a definite cost risk. A lot of facilitated communication methods require significant financial expense on behalf of the families. They have to fly places or go to conferences that talk about facilitated communication. Um, and those things are very expensive communication apps like AAC apps also have a cost. Um, I think overall the facilitated communication cost is even higher. Um, and certainly if you then have to go back and start over, you've it's. Yeah, I know and you know, I found it always interesting the conspiracy that we as speech pathologists wouldn't want this really technique to be known. I'm like, first of all, we want any effective technique to be known. Second of all, it relies on a person. It's not taking any like if this was the thing that that person needed and they needed a professional touching there, sure, I'll put in all the time I need and I'm going to work even more than I would have. My goal is actually to, you know, get myself as far from, uh, the individual so they don't need me, but just the conspiracy that we wouldn't want this to be known to doesn't make any sense from a financial standpoint. On on our perspective and also just the, the objective of anyone who's gone into this, this field. It's it's not to hide evidence or spend more time in therapy than is needed. Exactly, absolutely. And I think having said all that, and it's such a great discussion, I want to make it abundantly clear to all of our families, our caregivers, our loved ones that are listening, that the goal of this discussion is absolutely not to shame parents for having hope and wanting to have easier communication with their loved one, because, you know, people go through so many different instances in their life where they might regress or there might be other instances that might, you know, impact their communication skills. And it can get very stressful. It can get very worrisome for families. And all they want is for their loved one to be able to communicate like they used to or, you know, or just to build on their skills. So we absolutely have to hold space for that. Yeah. And in fact, these are conversations that we have regularly with families. We have families. And we would absolutely. If anything, I think you guys would agree. We would love for you to come to your SLP with these questions and say, hey, I've heard about this. Can you tell me more about it? We would much rather you do that. And so we can, and we can guarantee you any good. SLP will give you a balanced view of anything that you are considering. Yeah. So, you know, so let's talk a little bit about some of the themes that we hear coming up repeatedly from families that might make them maybe seek out facilitated communication. Um, so yeah. Did you want to maybe like talk? We can start by talking about some of the overwhelm that they might feel. I'll let you take it away. Yeah. I mean, I think a big one would be, um, slow progress. Um, I think that the way that FC is taught and presented, um, it definitely promises fast learning and fast progress and and not just saying, um, you know, simple wants and needs easily, but saying really complex ideas right away, which, um, I think parents so so they might be feeling slow progress with the current communication methods, but then also this strong desire to connect with your child. And if there's the possibility that, you know, in two weeks time, they can be saying deep, profound thoughts about their feelings about themselves and their lives and how much you know, they love their family members. That is a really powerful thing and that can give immense hope to an individual. So I think the the desire to see progress, to connect with, with your child, it can be really, um, really difficult to have, uh, a child who is, minimally speaking, or non-speaking and, you know, you're finding ways to connect with them and in different and unique ways, but you're still looking for that ability to share and communicate with each other. Yeah, I think it really plays upon parents grief, um, that they are not at this time able to have the kind of conversations that they may be imagined themselves having with their person. Yeah. And, you know, in my opinion, it's taking advantage of that grief, um, and selling something that promises. What isn't there? Yeah. Yeah. Yeah. I mean, if it could be understood that that message that you'll get is actually what the facilitator subconsciously thinks that child feels about you or their life. That's different. And, you know, parents, I think if they if they really understood and absorbed that it would be like, no, I'll take the. The slower progress that actually represents what my child wants to say. But I think just the the stress and the overwhelm of of parenting a child with a disability and who, you know, is at whatever level they are in their communication journey and wanting to have some more control over that and speed it up. And, and um, I think there might even be that feeling as well of why not? Let's just give it a try. Um, the no stones unturned kind of idea of like, we will try all the available things for sure. And I understand that. And I think that, you know, a lot of people do like the idea of a board as well. Like, they think it's a bit more simple sometimes the AAC devices we propose seem a bit overwhelming, or there's a lot of stimuli on it, but they can just have this board that just has letters. Um, and, you know, I think that that could be discussed with a speech therapist if you think something like this is a better fit, we can, you know, try to work more on typing and literacy, but we just wouldn't use the techniques of facilitated communication. It would be independent independently spelling and typing. And that's not going to be a possibility for all of our students, depending on their cognitive and literacy skills. Right. Um, but again, that would be something that could be explored and spoken about. Um, and certainly I do have some students who type on their own to type messages. They do write messages. And that's not what we're talking about here. We're talking specifically about when there needs to be another person holding the hand, arm or board to make the message appear. Um, we should also be clear that sometimes letter boards are used in other areas of speech therapy, specifically in TBI, traumatic brain injury, stroke, and things like that. So we do sometimes use letter boards, and sometimes people communicate by independently pointing to letters or by eye gaze. There's a SLP breadth is quite wide. Um, so we don't throw out letter boards entirely. Yeah. Um, we don't throw out AAC apps entirely. It's the how you go about it that needs to be very carefully considered. Mhm. Yeah. Yeah. Mhm. I do feel like there's another theme too, when a student is often agitated and we have this sense that there is discomfort or there's a problem. And that is very difficult for parents to live with on a daily basis, because of course they want to be able to help. And that does push people to drastic measures. Um, because they need us. They want and need a solution. Um, that is, you know, the person can't communicate independently. Yeah. Yeah, that's a good point. I yeah, I didn't think about that, that it could be following times of kind of crisis or really difficult developmental stage where you're just kind of desperate for, um, a solution that could that could work quickly. I've seen I know that in a couple of situations that I'm aware of, oftentimes I see families thinking of these things more when their loved one had the abilities to communicate in one particular way, and then all of a sudden, not anymore. And so they're thinking like, okay, but they used to be able to do this, like, how can I get them back to that? Right? And there's a multitude of ways to do that. Right. There's a lot of different scientific, valid ways. But oftentimes, you know, they seem like you said Cassie earlier. They might seem overwhelming or insurmountable. Or maybe they're not confident in doing those techniques with their kids. So they're like, okay, let me try this thing. These other families are saying it works. Why wouldn't it work for my family? So it's such a hard thing to reconcile for families sometimes because they're just, like you said, desperate to make sure that their kid is back to the way they used to be. And it's a hard thing to. Yeah, yeah, that's a really big one. And I do think, um, if we don't know why somebody has regressed, um, it's even more difficult. And I think we should be upfront in that when we see a communication regression, it's a tragedy for us too. We are really sad with the families that this has happened, and it can happen for a variety of reasons. There are many health conditions that cause regression. Sometimes there's trauma involved that can cause a regression. Sometimes that's just the progression in the nature of that particular diagnosis that involves periods of plateau or regression. And all of those are very difficult, especially considering how hard families work to go in the first place to get started with communication. Um, and we very much empathize with the difficulty of that. Um, yeah. I'm thinking that maybe some of the themes that we've just covered align with the feelings or experiences of some of the people listening. And I want to say again that these really do come up regularly and that you can ask, um, you're not alone in if this describes what you have felt or things that you have tried, and there's no judgment from our part. Um, because, again, the onus is on us as the therapist to make this scientific evidence clear, um, and support families with methods that respect and fulfill the student's communicative autonomy. Um, let let's talk a little bit now about what can be done within the realm of evidence based practice to support a family who might have some of these experiences. Yeah. I mean, if if the family. Are you thinking about someone who might be feeling a bit overwhelmed by slow progress? Yeah, yeah. I mean, I think the best thing is to work with your SLP, and it slow progress can be multifaceted. There could be a lot of, uh, personal things going on at home as well. They're sometimes making activities more motivating and interesting and personalized to the student can be effective. But then in terms of actually adjusting your AAC approach, that would be another, uh, possibility. There's a lot of AAC apps and options that could be trialed with a student to see if there might be a better fit. I know one, um, one reason that people like. The idea of facilitated communication is because the idea is that this extra support is just this small help that they need to get that message across, and that kind of leaving everything up to them. And independent might be too much, too big of a task sometimes, you know, editing a device so that, say, the icons are bigger and the access points are just more clear and accessible for the student. That SLP is a great resource to make sure that all of these decisions are made in a way that reflects the student's motor needs, cognitive needs, language needs. Um, I think that trial and error is often the the best way to go. Yeah. And, um, yeah, that that would be the main thing I would say. Would you add to that, Marla I think I would, I, I think it can be difficult, but it's valuable to be clear with yourself and your therapist what you're finding difficult or overwhelming. When we can define the problems, we actually know where to start looking for those answers. Um, sometimes I encourage people to put this on a scale of 1 to 10, where one is like, I'm completely unhappy, disheartened by how my child does or does not communicate. And then ten is like, everything's amazing. I've never had any communication difficulty with my person. To be clear, I never hear ten from anybody. Um, but think about instead of what does it take to get to ten? What does it take to go up one number on the scale? And that's often your answer of your number one priority or where to start. Yeah. With your supports. And you can let your therapist know like we need something we can take to the playground. We need something we can have at family dinners and be be quite specific. SLPs quite like to be creative. We like to find and make solutions that work for people. And sometimes, you know, if a family is like, I can't look at this AAC app because I can't take in 60 things at once. Absolutely. We all, the most common AAC app has a grid of 60 as it's kind of standard. That's why I said 60. Um, we have a lot of things that we can do to support a family in that position where we might just pick like one word to start with and just work on modeling that. Um, and that way everybody learns and it's in achievable, reasonable, um, pieces. Yeah, I love that. And I love the idea of focusing on specific activities, you know, like I have, you know, sometimes a parent's complaint will be, I just want to have a moment of connection after school where I can say, what did you do? And there's just some kind of response. So maybe for a bit we're not using the the Touch chat or Proloquo or whatever app they're using, but there's going to be some visual board that we've practiced that that family has with some visual options to explain that the that the individual can point to, to talk about their day with their parent or how they felt. Um, but yeah, I, I agree with you finding out what those moments are that maybe are impacting parent quality of life. Yeah. A lot and making them seek out other options and looking for simple tools that yeah meet that child's needs and and and then also helping the the parents understand that these things do take time I would say make that visual and it's not going to work right away. But going through the process of effective teaching, um, modeling it and, and making it clear that, yes, we use some prompting. But if if I came and took your child's arm and pointed to math and happy about their day, it's not necessarily their message. Yeah. Yeah. And, you know, maybe they weren't even in math. Like. Exactly. That's the that's the thing. Um, yeah. So I, I think we can conclude this episode episode with like, immense empathy for families and this message of we are here to help you. Um, and we can be creative if our first plan is, like, you're not digging it. Tell us, because we can adjust. We can shift. We want to know what you really want to work on. And, you know, we will definitely go there and have that conversation with you. And sometimes many times, um, as we adjust things over time and as your person develops. Yeah. And I think the other thing is oftentimes I find even from an OT perspective, like we can sit with you as families and provide you like the bigger picture. Like, sometimes it's, you know, it's hard to work on something, not knowing how it develops further down. And you kind of want to go from A to Q, but we kind of have to work on, you know, all the letters in between and then work towards Z. Exactly. So I find that that's often very helpful. It's just like, let's just sit down and let's just map it out. Like, okay, we can't go from one to the next because there's all these little pieces in between that will get us there. And oftentimes I found that families are like, okay, I get the bigger picture. So definitely don't be shy and ask your therapist ot SLP being like, hey, how does this work? Like, how do we go from point A to point Z? And you know, then it can give you a better understanding and gives you better adjust your expectations with respect to progress for your for your loved one. Yeah. Yeah. And I think, I mean, also, if there's any SLPs listening to this, making it one of the most important part of parts of your job to share small gains with families because they are there. And I know, you know, whenever I'm reviewing a year of therapy with a student and writing their progress report, I'm always amazed at at seeing what's happened that year. And I think families live day to day with their child. And it's I mean, I even know just raising my own kids. I barely see them growing and changing before my eyes. But give me a video of the year before and I'm like, that was a baby. Yeah, you have the benefit of time, right? Yeah. So I think parents reminding parents that it's hardest for them to see those little changes and those gains. Absolutely. They are happening. Um, and if they need a reminder from a therapist, if they need a check in about goals and just, hey, can you, you know. my mind's been really scattered lately. Remind me what you're working on and totally fine. Yeah. What's been happening? How much change you've seen? Those are things that we're always happy to review and talk about. And actually those. That's my favorite part of my job is looking back and seeing what progress has been made. So I think for therapists, remembering to have those discussions share small gains. And for parents, you know, maybe watch that video from a year before and you might be surprised about some of the progress that's been made. Yeah. Oh, I think that's a lovely way to close the episode. And we will put some links in our episode page around, like other resources that you can check out. Um, there are some pretty interesting documentaries that I mentioned that go through, you know, the time in the 90s when facilitated communication was really big. And what happened there? Um, and so we will include those on this episode page. Yeah, I love that, um, documentary. It is dated a little, and there might be some cringe moments for how kind of disability or autism is described, but it is amazing to, you know, if you were considering these methods with your child. I think watching that and seeing the experiments occur and actually how they were done, and then remembering that, I think 71 more of those were done that had the same findings is a really useful thing to to witness and help you absorb. Uh, I think the, the meaning and consensus behind, um, how professionals feel about this topic. Thank you so much for your time, Cassie. It's been a real pleasure to have your insights and contributions on this episode. Um, thank you for tackling a huge topic with us. Thank you for for having me and Marla. I really appreciated all your extra insights on it too, because. Yeah, it's a it's a complex topic and complex and delicate and yeah. Deserves our attention for sure. Definitely. Thank you. Thank you.