Episode 322: Recast: Kathy Howery: Understanding the Lived Experiences of AAC Users

This week, we share a “Recast” of Chris’s interview with Kathy Howery! “Recast” episodes are episodes from the early days of Talking with Tech (with improved audio) that share important ideas Chris and Rachel want to highlight! Kathy is an AAC specialist, researcher, and educational consultant from Alberta, Canada who emphasizes the importance of understanding the lived experiences of AAC users from their perspective. She also shares about how therapy practices can improve by focusing on the personal, emotional, and social aspects of AAC use, and why AAC users should be provided with multiple communication modalities to better demonstrate their intelligence and capability!

Before the interview, Chris, Rachel, and the previous host of TWT, Lucas Stuber discuss the lived experience of AAC users and the importance of being empathetic and supportive in our therapy. 

Key Ideas This Episode:

🔑 It’s not just about knowing how AAC devices work cognitively or intellectually - we need to do everything we can to understand what it feels like to use these devices and how they impact social interactions.

🔑 Kathy highlights the importance of developing empathetic practices, including challenging our preconceptions and being open to AAC users' personal experiences and perspectives. The aim is to foster a more compassionate and understanding approach when interacting with AAC users.

🔑 AAC users often use multiple modalities to communicate, including gestures, facial expressions, and body language, just like non-AAC users do. She also notes that an AAC user’s delay in responding can affect some interactions, and she stresses the importance of providing AAC users with various means of communication to ensure they are perceived as capable and intelligent.

Transcript of the Episode

Please Note: This transcript was generated using speech recognition & AI tools; it may contain some grammatical and/or spelling errors.

00:00:11 Lucas Stuber
Welcome back once again to talking with tech. This is Lucas Stuber, joined by Chris Bugaj. How are you, sir?

00:00:16 Chris Bugaj
I'm great. How are you?

00:00:17 Lucas Stuber
I'm fantastic. And Rachel Madel is usually great. How are you, Rachel?

00:00:21 Rachel Madel
I'm usually great.

00:00:26 Lucas Stuber
Well, I think we have a pretty great interview today, and I'm just going to let you go ahead and introduce it.

00:00:30 Chris Bugaj
I had the great fortune to talk to Kathy Howery, who is a researcher and kind of a name in the field of AAC out of Edmonton, Alberta, which is up in Canada, in case you don't know. And what she has been researching for a while now is what she calls the life lived of an AAC user, meaning all of us have these social scripts that we use. You know, like, you know, what to do when you go to a restaurant, you know, the waiter comes and says something. We have this how things work for verbal speakers, you know, people who primarily use their voice as their primary form of expression. But what if you're an AAC user? How does that change for you? And then what does that look like across your whole lifespan? You know, so what Kathy's been doing and what the interview you're about to hear is all about is all of her research on what are some of those aspects. She spent a lot of time with people who are end users. I don't know if they're ever an end user, always learning, but people who are proficient users of devices and kind of explored what that some of those questions might be. And she's done a lot of research on it, and she's going to be presenting, she's going to talk a little bit about that at Atia, which is coming up here quickly. And then also again at Isaac, she's doing a pre conference.

00:01:49 Lucas Stuber
I'm jealous. I want to go to Isaac so badly. The Australia bit, that's pretty cool. So when you say, I mean, one of the things that I always worry about, I guess, with the social scripting element is the fact that AAC, especially for younger users or entry level users, can be so prescriptive. Right. We're only giving them access as to what we sort of think they should have access to. So when you say that she's working with proficient users, is this a different situation for them? These are people who are composing their own messages.

00:02:16 Chris Bugaj
Yes, exactly. What I mean by social scripts is for us, how we, meaning us, people who are verbal communicators. Like I said, when we go to a bowling alley, we know what the script is. I say it's my turn and we just fall into line of how things are supposed to work. But when you're an AAC user, maybe they don't work quite the same way, and maybe they do. That's what Kathy's trying to figure out. For instance, one of the things that comes up, and you'll hear it in the interviews, but just to tease it a little bit, is the idea that I have my own unique voice. But many AAC users share the voice of somebody else. So how is that change when you have, when your voice is so tied to your identity, what does that do to a person's psyche and how they see themselves when they share a voice with other people? Now, I know there are programs and ways of trying to create your own customized voice, which I know I hope we get to talk to those people somewhere in the future in the podcast. But right now, many people who are AAC users share the same voice. And so that's just one of many things that she brings up in the, in the interview.

00:03:27 Lucas Stuber
Yes, that's a great point, and that's a great point, and I'm glad you brought it up too, because we are going to be talking with some of those folks. But, you know, I've had the experience where I used to take out these large social groups of young adults that are ASU users, and I remember going into a safeway once, something like eight or ten AC users, they were all young men with down syndrome, and I kept hearing the same voice from multiple directions, asking for help or talking to me. These things. At that point, it was an identity issue. It was also a safety issue. These are real concerns that we need to address as an industry.

00:04:00 Chris Bugaj
That's just one aspect. Think of another one might be how many AAC users do you know that spend most of their time with somebody else, meaning they have an attendant or a family member or someone that's there, all of us being speech therapists. Right. Therapy is best when parent. Okay, you know, maybe sit over there so I can give some rapport, because when you're there, you tend to answer all the questions. You know, you tend to go, no, you know that, sir. Come on, say it, say it.

00:04:25 Rachel Madel
Yeah.

00:04:26 Lucas Stuber
Parents are mind readers. Yep, sure.

00:04:28 Chris Bugaj
You know, you know that phenomenon. So what does that do when you're an AAC user and that person's with you beyond, you know, that many more hours of the day? You know, that's something else that you like to explore.

00:04:41 Rachel Madel
And you bring up a really good point, Chris, in that children don't talk the same when their parents are around or adults are around. And it's interesting to think about how does that shape what a child says and how they say it? And oftentimes kids, especially as they become young adults, they're kind of testing those boundaries and learning how to converse in a more social way with their peers. And it absolutely has to be affected when an adult is constantly around and in some cases, having to assist you in communicating.

00:05:16 Chris Bugaj
Absolutely. And what if you don't like your mom and dad? I mean, jeez.

00:05:20 Rachel Madel
Which most teenagers don't, right?

00:05:23 Chris Bugaj
How do you rebel?

00:05:25 Kathy Howery
Oh, my gosh.

00:05:26 Lucas Stuber
That's funny. Well, I feel like we're going to have a lot to say about this. Maybe it's best just to go ahead and listen.

00:05:31 Chris Bugaj
I think you're going to enjoy it.

00:05:33 Lucas Stuber
Well, without further ado, let's go ahead and listen to Chris Bugaj’s  interview with Kathy Howery.

00:05:37 Chris Bugaj
Fantastic. Well, welcome to talking with tech. And today we have an interview with Kathy. Howrey am I? Am I saying that right, Kathy?

00:05:45 Kathy Howery
That's exactly correct. Yes. Lots of vowels in that last name and you nailed it. Very well done.

00:05:50 Chris Bugaj
So, Kathy, tell us a little bit about yourself first. How do we know each other? How did we meet?

00:05:55 Kathy Howery
Well, I think you didn't know this, but I've, well, the first thing I knew about you was I used to teach an at class at the university here in Alberta. I'm from Edmonton, Alberta, Canada, and I used your orange. I'm not going to remember the exact title, but I'll give you a little shout out right now. Now here it is, your assistive technology textbook in that class. So. And then I think we actually might have connected when you were doing a UDL online course. I think we talked to each other then. Yes. And then most recently, in terms of the world of AAC, you came to Edmonton and got lots of people interested in messages that I care very deeply about. So that was like, yay. Go, Chris.

00:06:45 Chris Bugaj
Appreciate you hooking me up with that, with that gig. And you know what I think it is? It's sort of like you can't be a prophet in your own land. Do you know what I mean? Like, I can say the same things I said there and people won't listen to me because I'm Chris Bugaj where I am. You know what I mean? You're just Chris, the person that comes to my school. But when you travel and you can hear someone else say the same exact thing, you're like, oh, yeah, okay. Must be, you know.

00:07:07 Kathy Howery
Yeah. But you stay with a little bit more panache than. Quite a bit more panache than I do. So I'm gonna. I'm gonna, you know, you give a little value added fun, Chris. So anyway, that was where we. I think maybe first said, hello, how are, you know, face to face kind of thing. So.

00:07:23 Rachel Madel
Yeah.

00:07:24 Chris Bugaj
Yeah, I think you're right. I think maybe an Atia. Do we run into each other at.

00:07:27 Kathy Howery
NTiA ones, too, as well? That's correct. Yeah.

00:07:30 Lucas Stuber
Yeah.

00:07:30 Chris Bugaj
Now, my presentations have slowed down a little bit with my job and things, but yours are picking up, right? I mean, you have some sessions coming up at different conferences. Tell me about those.

00:07:41 Kathy Howery
Yeah, I do. I've been kind of on the circuit for a little while, so I just recently finished my doctorate after probably too long, but that's okay. It was a great journey. Little history. Congratulations. Well, thank you. I started thinking I was going to study UDL and just couldn't wrap my head around how to attack that. And then a few different things happened along the way, which brought me back to the kids of my heart, which are aided communicators. And I've been working in this field for 34 or five years. Yeah, four or five years, that's right. And so. And then I fell into this class. Well, I went to a system or class on technology, and a philosopher of technology came in and talked, and she kind of blew my mind thinking, what people ask questions about technology like that? We don't ask questions about technology like that in the at world. And so we went for coffee afterwards, and she said, you need to take this seminar by Max van Manning, phenomenology seminar. And I'm going, okay, because I was talking to her about speech generating devices. And so I took Max's seminar, and for. Until Christmas, I started going, what are you guys talking about? Like, philosophers? And anyway, it was. But by Christmas, he had me hooked, and I decided that I was going to go back and actually explore the lived experience of speaking with the device. So I started by just reading my first little paper for Max was really about reading first person accounts, because with phenomenology, you need to actually not have somebody talk about a time. I like my AAC device because I was really good at sharing my feelings with it. You actually have to get to concrete moments of lived experience, and then you look at that and you start to reflect on what's the real meaning of speaking with a device for that person. And there's a few different ways, ways of looking at that. So, as I said, a long way to introduce I've been on the road with some of the themes from that research. So last, when Isaac was in Toronto, I gave a paper on the meaning of voice for those that speak with speech generating devices. And then there was a few people in the audience from Australia who heard that. And so actually, now, to my delight, and a little bit of, I'm doing a pre conference on the lived experience of speaking with a speech generating device. And in that precon, we're going to go through, again, this is sort of philosopher talk, and it's really trying to look at technology through a different lens than technology as tool. And what does technology, what does, by its very existence in the world, this technology do to shape people's lives and change their being in the world? So you look at lived body, which I'm talking about voice. Like, how. So the meaning of voice, lived space. How does speaking with a device change your, change the audible reach of your voice and change your lived the space in which you live and talk and engage live time, which is ending up to be one of the biggest topics, because anyone who knows about AAC knows that the time dimension is critical in all kinds of ways. Lived relations, how does the use of this technology bring me in or out of relations with others and then live things, which is kind of the looking at the device itself, and how does that impact one's being in the world by the use of the device? So, yeah, so that's what I'm doing at Isaac, and then I've done a few other ones. I've done at ATA last year, I did one which I called the demanding device, which is not only the idea that there are cognitive and physical, sort of the traditional demands that we think about, but what is the device? Just what is the fact that these devices exist in the world, then put on to people with have significant speech challenges? So that was really, that's maybe my favorite piece to kind of unpack that. And then at Atia this year, I'm going to be doing sort of a little, not exactly a repeat, but looking at meaning of voice again, the one that I did at Isaac. So, yeah, so I've been, and I did want to, I did one at Asha, too. I did at Asha the demanding device, which was quite fun and was pretty well received. So.

00:12:44 Chris Bugaj
So were these presentations born out of your research? I think you said that, right? Yeah. And so what are some of, like, the highlights? Tell me some of the things that, you know, if, if you came to one of your sessions, what were, what would be some of the big takeaways you think people would get.

00:12:58 Kathy Howery
Well, I think the most important thing that you're going to try and do with a phenomenological study is to actually put people into that moment so that you can say, oh, for me, I'll say this for me, I knew a lot about, I knew cognitively or intellectually a lot about AAC before I started this. What I, but I didn't really understand, I didn't really understand what it was like to do that. And so for me, the takeaways of understanding what we think about the demanding device, understanding the expectations and attitudes that those of us who are speaking, and especially my bias was so strongly towards tech and oh, it's just a tool, but we need to get you that shifted for me, tremendously. And so it's kind of, you get some understanding and hopefully that understanding can have an impact on your practice. The whole point of this is to have more pathic or empathetic practices. That's not to say that we throw away what the knowledge and the understandings and the explanations, but really is trying to get at a closer understanding of what it might really be like. So that when we as practitioners or family members are engaged with people around technologies and particularly around the speech generating device, we might have some of our preconceptions challenged. We might come to it rather with an if phenomenology is done well, and I can't profess to doing it well, but I'm trying. It is supposed to kind of evoke a new sense of wonder about something. So, and to really be open to what the person's experience brings rather than to trying to explain it away or trying to think. I mean, I was a fixer. I would go into a classroom, and this was the hardest thing when I was doing my research, is because I just, I wasn't going in to try and fix anything. I wasn't going, I just was going in to see and to try and understand. So I know that maybe sounds a little bit esoteric, but I think it's a piece that we've not really dealt with in the field of AAC. And even there's a big many books written about philosophy of technology general, but we haven't stopped to think about the philosophy of assistive technology in the fact of how does this change the lived experience of people? What other things might we want to be considering about technology? So it's been fascinating for me, and that's kind of the impression that I get from other people is going, first of all, after I'm done. Usually there's just this silence and then they can process and we talk a little bit. And I usually laugh about. Yeah, I know, but, yeah, so I think that's it.

00:16:27 Chris Bugaj
You touched on a lot right there that is so personal to me. Right. Because what about what I do working in the classrooms with students? Do you find that a lot of the people that you meet and that you talk with have a resistance to changing their mindset or their philosophy? Or do you find that most people are like, let me put it a different way. Do you find cognitive dissonance something that really impedes what you are trying to convey in your message? Like people just shut down and be like, no, it can't possibly be a change. And what are some of shifts you've seen?

00:17:05 Kathy Howery
Well, and so interestingly, I think first, in a couple of instances, I've gotten people, clinicians who just want to say when I tell them how it is, they want to explain, well, but that's because of this or that's because of that, or that's because this wasn't working right. And I'm going, that's not the point here. That's how it is for this person. And so we need to pay attention to that and not try and explain away why or not. Let's just sit with this and try and understand and be more open to the person's actual experience. But I've also gotten people who, so the first time that I gave a talk on this, Jeff Higginbotham was in the room and lots of people, and he actually ended up being my external on my committee, which was marvelous and a little bit terrifying. And the first time that I gave this talk, he sort of set up and he says, okay, Kathy, so what? So what can you do with this phenomenology? And I gave him kind of the pat answer that I knew that Max would have given, which is it's not what you do with phenomenology, it's what phenomenology does with you. And of course, being a neophyte, that was just sort of what you say. But I came to understand that that's really it. So the people who get it kind of come away a little bit changed. So I'll give you an example. Well, one time there was a teacher in one of my talks, and I think it was one about mostly about voice and a little bit about time. And because I kind of pull these together in different ways, different times. Anyway, she came up to me afterwards kind of in tears and said, you've given me a burden I didn't know I had. And I thought, oh, enough burdens. And then I thought, no, that's exactly it. I need you to understand this. I need you to understand this.

00:19:07 Chris Bugaj
So, yeah, so what are some practical ways when after people come, they apply what you've talked about?

00:19:17 Kathy Howery
Well, certainly in terms of the demanding device, one of the things that I think people take away is that we need to not be so driven to the highest. And again, this is something that we all talk about, but you don't, you know, it's not always the high tech that's going to bring you into relation with someone that we really need to consider what communication is and how people want to communicate and that maybe some of us, myself, guilty, need to just back off and let people communicate in the ways they need to communicate. And so that's been a, you know, that's a consistent takeaway from the demanding device talk, which is great. And again, it's nothing. I think what's interesting, it's not that this isn't out there, but it's not there in a way that evokes an understanding of the real meaning for people. I think that's one of those things. The other thing with lived voice is how? Well, there's a couple of things. One is my voice is not my own. For me, when I started doing this, and this, this came up at the Ata as a question. So I'll share this. I used to, you know, we, I think we all did go and put my voice into kids devices, or I would say, oh, let's get a classmate to record their voice in the device. And then you're going, well, how bizarre is that?

00:20:52 Chris Bugaj
Right, right.

00:20:54 Kathy Howery
My friend's voice come out and that's supposed to be my voice. Like, you know, but I never considered it. It would be bizarre. But in one instance, one of my participants texted me and said, well, I just listened to Carly Fleischmann interview. Channing Tatum. Right? That's his name. He's so pretty to look at that. I always forget what his name is. And she said, and I just closed my eyes and I imagined it was me interviewing because she's using the same voice as me.

00:21:26 Chris Bugaj
Yeah, people can share voice.

00:21:29 Kathy Howery
Yeah. And what is that? To have a voice? You know, I can tell that my sister's voice sounds like mine, but voice is supposed to be as personal as fingerprints. And yet, you know, and voice says so much about us. It talks about our age, and yet in the world of AAC, it's just so not. And then I did have people ask me whether, you know, voice as personal voice came up very often. And really what came up was people still need to be understood because even the kids that took all the time to pick their very special voice at the end of the day went back to a more generic voice because it was still the one to be understood. So, you know, it's that lived moment where I can have the fanciest voice I want, but if nobody's underst after the thing, people are nodding their heads and I know they don't understand one thing. I just said. I don't have a voice. Right, exactly.

00:22:27 Chris Bugaj
Yeah. The message is more important. Yeah. It's sort of like that phenomenon of listening to you hit the record button and you record something and you go back and listen to it and you're like, oh, that's what I sound like. Right. Because it's so unique. Everyone's voice, it's part of your identity. So if it's a shared voice with somebody else, what does that do to someone's identity? Is that what, that's what you're getting at?

00:22:47 Kathy Howery
Exactly. What does that do? And what do we need to consider about that for therapy as therapists, teachers, parents? Right. You know, this whole, and I don't think we do digitize voice as much as we used to, but still, you know, our best, best intentions. And now you go, oh, that's weird. Right. So, and, you know, the other thing about it, and I'll talk a little bit about lived relations, is how the minute that the kid has a technological device, they're seen as smarter. The minute. And that came up, you know, it came up when kids went to see people without their device and they asked them if they needed a diaper. And, you know, it's just because she says, if I had my device there, it would have been different and she would have never treated me like a baby or other times where she was having a conversation with a friend who also was a device user who didn't have her device, and people came over and said, oh, you know, you're so smart. Too bad about your friend and the friend Washington. Absolutely. As, you know, smart, whatever smart is, you know, but it's that, it's this.

00:24:01 Chris Bugaj
How people perceive you.

00:24:02 Lucas Stuber
Yeah.

00:24:03 Kathy Howery
The relationship with the world changes when you are an aided speaker versus, you know, and so what does that say about what we need to be doing and what attitudes we. Right. I, and so it's that kind, the meaning of the device in these kids lives are way more than just.

00:24:29 Chris Bugaj
So you know, I often think of it this way when we're selecting what communication system will go in place. And, you know, I'm a big proponent of thinking of it as not necessarily AAC, but AAL. What's the language that we're going to? Where are we going with this? So that the student will be eventually able to generate language. And the. So often I think if we don't give them some path to a language, what you're really getting at with those devices is they can produce. It gives them an opportunity to produce whatever they want to say. It's a gateway to something. I was going to say this. I kind of rambled there for a second, but let me say this. The more high end users that I like, people who have won on the back end, they're functionally using language with communication devices. Tell me if you've noticed as well, because you must have spent lots of time with users, many, many hours, find that most people who are proficient using a device don't use just that device. There's not just one communication system. Like, I'm talking with my hands right now, and I'm nodding and you're nodding. So I know you understand me, right? That these are multiple systems that we use to communicate, and just like you and I are now, or I'm using my voice and my hands and my, and my body gestures. So do aided communication users, they have their, I don't even think of as a primary device. I think they have a device and they have an alternative device and they have another system. Do you find that to be true?

00:26:07 Kathy Howery
Absolutely and absolutely. And, in fact, you know, sometimes, and this is another, the screen gets in between and all of those other things get lost in translation. Right. When you have a. And so, but most of what, I mean, not most. A lot of what we convey, we convey in all these other ways that there's one young lady who, yeah, she uses her device, but, man, her and I can have all kinds of conversations without her ever going to her device. And then there's other times. And again, this gets to the whole time phenomenon. And is that the whole, you know, so here's, here's another thing that I, you know, I remember, and I sat for hours and hours and hours and hours and talked for hours and hours and hours. And so I would ask a question to a person, you know, do you remember a time that used your device that was really important for you or something? And then, so they'd be answering and their mom would be there or there, and we'd be having this whole other conversation going on because of the hours, you know, because as human beings, we can't handle silence very well when there's two of us together, or three. And, you know, so. So she would be answering a question that by the time she answered, I kind of. Whoa. You know, and you have to think, well, but that happens over and over and over and over and over again because the screen is between and the time it takes. So. But if I'd had just asked her questions now, this is me taking more control over the conversation. You remember time and sort of, yes, no. And she could have been very. It would have been. I would have gotten something, but I wouldn't have gotten. I couldn't have gotten her actual lived moment in the way that I did. But you're right. We all need multiple ways to communicate. And one of my participants, you know, he taught me some good lessons because he prefers a letterboard with words. And, you know, I've tried this. Have you tried this? You know, and he's the most effective communicator I know. And we had a conversation together. It was. It was built up together. So. Yeah, yeah.

00:28:27 Chris Bugaj
You know, one of the things that I've been thinking about through our conversation, and this is just fascinating to me. I know we could talk forever on this, was the idea that if we don't give people some way, then how does that also alter their life experience? Right. I mean, just that phrase that you uttered, which you give someone a communication device, and immediately people see them as smarter when they're. Than if they don't have their device. So what does that mean? If we don't provide devices, you know, that they're never seen as. As capable. Yeah, exactly.

00:29:01 Kathy Howery
I know, and I totally agree. And yet, the flip side of that, I mean, this is why we have a really messy. The flip side of that is, if we put all of our energy on getting the holy grail of the device, have we slipped away from the nuanced, really important ways of communicating. So we have to be really thinking, as you said, about the myriad of ways that we, as humans, interact and connect. And the other piece, I'll say in the timepiece, I ended up the timepiece talking about, really, our kids don't talk in talk time. They talk in text time. And so one of the things that I think might be a bit of an equalizer. Well, it is. Is Facebook messenger and texting, because we. Although it's slipping away now, my kids seem to think that I should respond to their text right now. But we do have more grace in that time period. Right. And when I wanted to get somebody to understand what it might really be like to speak with a device, I give them only text. And we have a little Skype conversation. And so we're talking and you're texting in. So I think that we're in a world now that will, in a text world, have a more equal, more accessible communicative environment. But again, I worry that I don't want to lose the richness of everything that we. And there's a really neat talk. One of the pieces that I really started with on the Acrec by Colin. Colin. I can't remember his last name now. Anyway, he's a user of ALS, and he talks, or. He hasn't had ALS. He used a device. He's now passed away. But his talk is just brilliant about, you know, the different nuances of speaking with a device or through there. I don't even know. Is it with. Is it true? I still. And, you know, he talks about, you know, just when I thought we had a level playing field with texting and email, bam. Technology like this comes out. Right.

00:31:44 Chris Bugaj
And.

00:31:48 Kathy Howery
What'S the word I'm looking for? Making voice more powerful again. So. Yeah, so. Because that we're human beings and, you.

00:32:00 Chris Bugaj
Know, so technology changes, and you use what you have. Everyone uses what. What they have. And so. Yes, so if people wanted to come to your. How do people find out more about you and find more about the sessions and more about the concepts that you're talking about?

00:32:15 Kathy Howery
Okay, well, hopefully I do have a chapter in a book that talks about some of this. I should. I feel like an advertiser now myself. It's Eddie Burns. I don't know that very many people have it, but it's Dave. Eddie Burns efficacy. Efficacy of assistive technology interventions. And it's. What is the. What? It's called the chapter speech generating devices in the lives of young people with severe speech impairments. What does the non speech speaking child say? So if they wanted to get that book, and I think it's an online book, they can do that. I got a paper coming out, hopefully in a journal called phenomenology in practice pretty soon. Got a couple other things in the hopper that aren't close enough yet for me to be talking about them. If people want to come, if you happen to be at Atia in January, I am doing the presentation on meaning of voice. I don't remember what day it's on.

00:33:18 Chris Bugaj
Second, maybe third? Yeah.

00:33:20 Kathy Howery
Yeah, something like that. Kathy, Harry look me up. I'd be delighted to see you. And then for those of you who want to take the big step and come over to Australia in July, I'm doing a full day pre conference where we're going to be talking about this and I'm going to be going through each of those, they call them in phenomenology, existential, so lived by live space, live relations in one things and give you some, some snippets and some anecdotes, talk about them, and then we're going to discuss them a little bit, which I'm just so looking forward to. I think it'll be really fun.

00:33:54 Chris Bugaj
Oh, me too. I'm so, I wish I could go. I wish I could have a plane and go back to Australia and be there with you because it sounds like it's gonna be an amazing day.

00:34:03 Kathy Howery
Thank you. Well, I hope so. And I'm very, very pleased and humbled that they asked me to do that and very excited. So, yeah, and I'm really pleased that you asked me to have a conversation with you today. This has been fun.

00:34:14 Chris Bugaj
So anytime, anytime we get to chat, I know we, we've had conversations before and they're always, they're always awesome like this, you know? All right, Kathy, well, thank you so much and good luck in your presentations. I know I'll be following up with you online with keeping tabs, so I'll talk to you soon.

00:34:33 Kathy Howery
Thank you. Thanks, Chris.

00:34:34 Chris Bugaj
Bye bye.

00:34:43 Lucas Stuber
Well, welcome back. I think that was a really interesting interview. Right? There's a lot of concerns there beyond just language.

00:34:49 Chris Bugaj
That's what I, that was my big takeaway is that so often as a speech language pathologist, I'm worried about getting, teaching the student language. What's their next words? Like, how am I having combine words or how do I teach them the word of the week, you know? And sometimes I lose focus of, well, what's going on in their life, you know, and especially for, with teenage and adult users.

00:35:12 Rachel Madel
Yeah. And I think you're exactly right. We have to take a step back and look at the why. Why are we even doing this? I think that we get so caught up in the details and the words and what progression and all these skills, and it's just we have to connect with the why as to, you know, what we're doing. And what we're doing is helping individuals communicate whatever that looks like. The other thing I thought of actually was now we have all of these adults with autism who are now able to communicate and writing books about their experience and specifically with Aba and how they hated Aba sometimes. And it's just so interesting. So I think that as a practitioner who works primarily with children, I'm very interested in hearing these adult experiences because we have to. In a lot of ways, we're the gatekeepers of what these children are able to communicate to us because we're teaching. And so when we're teaching, we just need to be mindful of that, of these things.

00:36:16 Chris Bugaj
Rachel, one of the things that was really eye opening for me, that helped me, which we were talking about Ada and other therapists, was I got was Twitter. A great resource for people is the hashtag actually autistic? And what you were saying is there's adults who have come out the back end that have autism, and they're now sharing those experiences. And that's one vehicle that people could immediately hop on and look at the actually autistic hashtag. And you could see all the stories that people are sharing about, like, this is what it was like for me, you know, and it really changed my mind and made me really open up, like, yeah, there's a whole movement of nothing about me me, you know? Yeah, we're not talking about people with autism unless they're involved in the conversation, you know?

00:36:58 Rachel Madel
Yeah, actually. So Carly Fleishman, who is AAC user, who has her own show, she was just on the Stephen Colbert show. She actually has a YouTube video about her experience in a cafe. And it's really interesting. I would recommend everybody go watch it. But it's interesting because we, you know, we walk into a coffee shop and it doesn't, you know, it might be noisy or, you know, it might be visually distracting, but the experience of someone who has autism is so drastically different from the sensory perspective. So I just think it any ways that we can kind of think through the lens of what our clients might be experiencing, especially when it's so, you know, different to our own experience, I think that's something that's really helpful because you're able to think, think more big picture. It's not just like, oh, they're not doing this. It's like, okay, well, what are the things might be at play that might not be affecting me and my sensory system, but might be affecting them.

00:37:56 Lucas Stuber
Yeah, well, that's, it all goes back to that lived experience thing. Right. And we're not just talking about folks with autism. I think we're talking about everybody, right? Like, everybody has a different communication profile and a different sensory profile and these things. Without getting too nerdy, there's this concept in linguistics called the sapir Whorf hypothesis, which is the argument that our whole lived experience or our perception of the world is framed by the language, that we have to express ourselves about it, if that makes any sense. And then one of the examples is old northwest native american languages that maybe don't even have words for the cardinal compass directions. Instead, there will be something like ocean word or mountain word or these things. And neurologically, what does that mean? A completely different than visual spatial structure as a result of the language or, you know, the chicken or the egg, basically. Like, what, you know, what came first. But I wonder that a lot, actually, with AAC, you know, like, are we. Is a restriction in language availability? Does that constitute also a cognitive restriction of sorts?

00:38:57 Chris Bugaj
I'd like to assume not. You know, I mean, you got to make the assumption that it's not impacting that language and cognition. You can work on those separately, you know, because what's the other assumption? You make? The assumption that they are impacted. And so if a student has language issues, then they must. They must have cognitive impairments, as well, and we wouldn't want to do that to anybody. Right.

00:39:16 Lucas Stuber
Right. Well, what I mean, too, is, like, is not so much. Are they not so much. Like, is their language impacted because of a cognitive impairment, but is by having a restricted set of words that they have access to, is that then restricting cognitive development? I guess. Well, I don't have an answer, by the way.

00:39:38 Rachel Madel
Yeah, well, just brainstorming, you'd think that it would be, right? I mean, if we're thinking about spatial concepts, for example, and, you know, under. If they don't have access to using that word and having a variety of opportunities to experience it through the use of it, it might, you know, affect their ability to comprehend the concept.

00:39:57 Lucas Stuber
So I feel like just, you know, I think we don't know. But I think you bring up a really good example. And I guess my point with even sort of raising the question is just to say that it's that much more important, right. To think about more than just the language and to think about the lived experience piece and these other things. And I'm just, for one, I'm so glad this research is happening, partially because we finally have a chronological period of AAC use long enough to do that research. Right.

00:40:24 Chris Bugaj
Well, and more people working on it than ever before. I think it's nothing. See? Is. There's not enough research, of course. Right. I think there wouldn't be anyone that says, oh, yeah, we have plenty of buckets of research on, but there's more people that are interested in it and more people that are having conversations like this than there have ever been in the past. And so that's really intriguing to me that we're going to have even more research coming out about how these things work.

00:40:48 Lucas Stuber
Yeah, well, so what? I mean, even thinking from the perspective, like, all right, I'm a school clinician in elementary school. What are some practical things that I can start doing to help the situation?

00:40:59 Rachel Madel
First of all, the awareness piece is huge. So just thinking about beyond the scope of communication and language, I think that these other things are at play. You know, like the voice, for example, is such a great idea to think about. And I don't know that there's a ton that we can do specifically to address the voice issue, but I feel like there just that awareness, we can start reframing how we practice. And I think that that's a big one, Rachel.

00:41:30 Chris Bugaj
I think. Tell me what you think about this. But I think a big part of the speech language pathologist job is then to work with the communication partners that are also with that student. Right. Or that person. So we might be aware, but maybe then the next step is, all right, mom, it's time for you to back off. You know what I mean? Or paraprofessional. I need you to understand that this person has all the other stuff in their life besides just the language aspect. And so it's coaching people through it, I think.

00:41:59 Rachel Madel
And I also think, too, we tend to treat communication in such a formal way. But kids especially are motivated by the informal communication, by the, you know, that's cool or weird or gross. All these things that we can teach kids how to say that are empowering, but also they're just socially more acceptable for a ten year old to be saying. So I think that that's an important thing, too, is let's not forget about those fun social phrases that kids are motivated by. And not only the users are motivated to use, but the peer listeners are motivated to hear. If they hear a kid saying, you know, that's dumb, or whatever social phrase it might be, they're going to be more. There's going to be more peer acceptance in that social group, in that social circle.

00:42:47 Chris Bugaj
Absolutely. I'm sorry, Rachel. We can't teach it because it's fringe.

00:42:53 Rachel Madel
Womp womp.

00:42:55 Lucas Stuber
So one thing that we talk about, right, as speech language pathologists is what we call MlU, right? So, which is mean length of utterance. So, for example, an MLU of two would be a two word sentence. Like, I want or ball want or something. And this is often where we see kids kind of stuck, right? I mean, at the elementary level. And so one of the goals that this student had was to get to an MoU of three, which would be like, I want ball or I want break or whatever. And these are terrible examples. They're all super functional, just requesting, but we want something different than that. But in any event, I was working with this student, and I think he was a little tired of me. I've been working with him for a long time and really trying to work on this commenting piece. And finally he said, ugly Luke butt. My name's Luke. And at the time, I remember thinking, yes, like ML for free. I'll take it.

00:43:42 Chris Bugaj
Absolutely know.

00:43:44 Lucas Stuber
You know, so you said that something like that. I don't know if the socially acceptable is necessarily what that was more. But it was certainly more socially appropriate, right? I mean, that was what an eight year old who's frustrated with their poopy teacher is gonna say. Maybe, you know, so great. Yeah, it was. I was very proud of that moment. He was using lamp and full. I mean, so he had, you know, a wide variety of words at his disposal, and he was really creative with them, you know? But to me, that highlights, again, like, the part of that lived experience can be like, I guess, what we would call the robusticity of the device. Right? Like, making sure that they. Making sure that he has access to the ability to say things like that.

00:44:20 Rachel Madel
And then also, too, what I teach kids that I work with is how to, in a socially accepted way, talk about that. So I actually have a story. I was working with a kid, and, you know, I don't exactly even know the details of the story, but he was on a playground, and he, like, was going to pretend or he was actually trying to pee on, you know, one of the playground things. And his mom was like, no, you can't do that.

00:44:42 Lucas Stuber
That's a great story.

00:44:43 Rachel Madel
And he thought it was hilarious, so much so that he, you know, he was telling me on his device, like, pee pee horse. Pee pee horse. So I'm like, okay, like, let's run with this, because he wants to tell me about it, and he's laughing. And whenever a kid's laughing, like, you need to run with that no matter what it is. So I'm like, okay, you want to tell me? I. I peed horse. So I expanded the MlU to three instead of two. And, you know, he. This went on for weeks. Every time I would come, he went. He would laugh. He'd say. And he'd build the sentence, I peed horse. And I'm like, you peed on the horse. And so it was just like, he loved it, though. And then what we started doing was, I'm like, okay, like, we can't just say, I peed horse, like, randomly. So then I added a quick fire phrase that was like, I want to tell you something. Something funny. So then he would, you know, do the quick fire phrase, I want to tell you something funny. I peed on a horse. So then it was like, okay, great. Now we're teaching the social context with we're not just randomly saying, I peed on a horse, because that's not socially accepted. But if you're going to preface with I'm going to tell you a joke, then it is. So I think that's just an example of, you know, finding something that kids are motivated by, even if it's really bizarre and weird and just running with it.

00:45:56 Chris Bugaj
In both of those stories that you just shared, what happened is you also. You made a connection with the student as, on a personal level. It just wasn't about just the language. It was about, hey, we're enjoying each other. You know, life is awesome right now.

00:46:08 Rachel Madel
Yes, we're being funny. Humor is one of the things that I think is so neglected in what we do, and it's literally the most motivating that we could even potentially imagine. So that's why I always, if there's a giggle or a laugh, I just, like, it's like a thread, and I just, like, keep pulling at it, because that's where you're going to get intrinsic motivation, and that's what I really want to do for kids, is to teach them how to say what they want to say.

00:46:33 Lucas Stuber
Well, Chris, I think you hit on another big one, too. That's a takeaway, maybe, from this whole thing, is to just bear in mind the humanity, right, of everyone that you're working with. And kids are kids, regardless of their communication modality.

00:46:46 Chris Bugaj
Yeah, treat them like people.

00:46:49 Rachel Madel
Yeah. Yeah.

00:46:50 Lucas Stuber
Right. All right. Well, we'd love to hear what you think. So please do feel free to drop us an email. And also feel free to join our Facebook group. We have a cool group now, right, called talking with tech. Probably something like 800 people in there, and it's definitely talkative. People are talking about tech. So come, come join us once again. This is Lucas Stuber, joined by Chris Begay and Rachel Madel. Hope to speak to you next week.