27. Improving Communication and Autonomy with AAC Devices with Rachel Madel M.A.,CCC-SLP
Brittyn’s guest, Rachel Madel, a Speech Language Pathologist working in the autism community, discusses how to help children on the spectrum better express themselves by using technology.
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IN THIS EPISODE
What is augmentative alternative communication (AAC)?
Picture Exchange Communication System (PECS) vs. AAC.
Using AAC to help with picky eating.
LINKS
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Follow @AutismDietitian on Instagram
TRANSCRIPT
Welcome to the Nourishing Autism Podcast where you take a deep dive into the research on autism and dietary changes, nutrition supplements, and lifestyle modifications. Every week, we break down nutrition topics and an easy-to-understand way for you to feel less overwhelmed and feel confident on your nutrition journey with autism.
Brittyn: Hi, everyone. Welcome to the Nourishing Autism Podcast. I'm your host Brittyn Coleman, the Autism Dietitian. And today I have an amazing guest. Her name is Rachel Madel and she's a board certified speech language pathologist, AAC specialist, a podcast host, and an international presenter, helping support parents of children with complex communication needs by helping them weave simple communication strategies into their child's daily life.
Rachel and I connected a few years ago from a mutual client and have collaborated since, and she's one of my favorite referrals for my clients has so much to offer it, to help [00:01:00] children on the spectrum, better express themselves, communicate and exercise their autonomy. Interestingly enough all of this can help with picky eating too. I really hope you enjoyed this episode and know that you will learn so much
Rachel, thanks so much for being here today. I'm so excited to have you on the podcast after getting to know each other after a few years now. So thank you so much for being here.
Rachel: Yes. Thank you so much Brittyn I'm so excited. I always love when we can get together and chat, and now it's just going to be on a podcast which is even cooler. So we can, we can share all of the gems of wisdom I have about communication out to the, to the universe.
Brittyn: Exactly. And the last time we got catch up, well maybe not the last time, but it was on your podcast and that's so fun. So it's fun to be able to be a guest on each other's podcasts. And we just have so much to talk about always. So yeah, we were saying it's going to be hard to keep this to 20 minutes or something.
Rachel: Exactly. It's gonna be hard for me to reel it in and not talk like for an hour.
Brittyn: Actually well, let's get started. Tell me a little bit about yourself and [00:02:00] how you serve your clients.
Rachel: Yeah. So my name is Rachel Madel. I'm a speech language pathologist, and I specialize in technology. So I work very closely with children who don't have consistent access to verbal speech. I love working with autistic students and a lot of my caseload is working with autistic students. But it's not just, you know, technology and a sense of augmentative, alternative communication, which is what I specialize in which we can talk about what that is in the second.
But I also just kind of geek out on technology. I'm all about fun, engaging apps that you can use. To facilitate more communication. Lots of assistive technology tools that you can use with students, especially when they get older. And they're you know, maybe struggling with reading and writing and there's so many different technologies out there that can help support the learning process and overall communication and development for kids.
And so I just love thinking about technology using it in my practice. My whole, you know, I own a practice in Los Angeles and that's kind of the, the theme amongst [00:03:00] all of the students that we serve with lots of different kinds of diagnoses you know, is we're somehow weaving technology into the work that we're doing.
And so I love technology. I talk about it all the time. Like you mentioned, I have a podcast called talking with tech all about how do we use technology to support communication? Yeah, and I'm just really eager to, to speak on the topic. I do a lot of speaking events and speaking engagements where I'm training other clinicians, other speech language pathologists, other educators, parents on how to utilize technology.
So that's kind of a cornerstone of my practice.
Brittyn: That's incredible. And I mean, it's so important to build technology and technology is obviously here to stay. And kids are so engaged by it and it's really great opportunity for them to utilize to learn. So I always love to hear, you know, what you're sharing and particularly AAC, which a lot of my clients have questions on and I've referred them to you.
But I also feel like AAC is a very, very much a buzz word in the autism community. So I love for you to share what AAC is [00:04:00] and how you utilize that with autistic children.
Rachel: Yeah, so AAC stands for augmentative alternative communication, and it's basically any type of tool. And that could be as simple as a picture and as advanced, as, you know, an iPad that talks. Any type of tool that can help support communication either to augment communication. So a lot of the students that I work with who are, are autistic, but their verbal speech is not consistent. So using it to augment verbal communication or for students who are completely non-speaking alternative communication. So it's kind of like breaking out the term, augmentative or alternative. Again, any type of tool. And I think that's where sometimes the confusion is it's like some people think AAC is only you know, the, the iPad that communicates.
But it really encompasses is an umbrella term that encompasses all different kinds of tools that can help support communication.
Brittyn: I think a lot of times what people are thinking of is just an iPad, you know, with Proloquo2Go [00:05:00] and installed and it's like, there are so many other pieces to it. It's not, that's not the only option. Well, I'm curious, and I think a lot of people wonder too. You know, PECS is one of those you know, tools to use for communication.
So what's the difference between AAC and PECS and when is like, is one correct to use over the other, in certain situations?
Rachel: Great question. So PECS actually falls under the umbrella of AAC. So it is a tool that can help support communication. But it's, it's oftentimes a place where we start with students. So oftentimes families come to me and they're, and I asked, have you had any experience with AAC? And they say yes, like we had a PECS book and preschool.
You know, and so my experience with PECS is that it's oftentimes the first kind of line of approach for a student who, you know, is not developing verbal speech or doesn't have consistent verbal speech. We use a picture exchange system to help them communicate the things that they want or the things that they need or the activities they'd like to do.
You know, my thoughts [00:06:00] on PECS is just from my clinical experience, most kids plateau. So for me, you know, if, and I, on our podcast, we talk to a lot of autistic adults. We talked to a lot of AAC users who are adults. So it's like, how can we inform our practice? Talk to actual AAC users, actually autistic individuals and none of them use PECS as their primary form of AAC.
So if we know that then the question becomes, so is there a place for it? When do we use it? What are the problems with it? And so, you know, one of the biggest problems I have with picture exchange is the fact that every single time, the vocabulary is presented in a different way. So for people who are like, what is a PECS system, typically, it's like a binder of laminated pictures and Velcro.
And you know, if you're bringing it out during snack time, which is most of the time when we're introducing communication for a child, who's not communicating consistently. It's like during food time, cause food is a motivating [00:07:00] activity for our students, for ourselves. You know, we're all motivated by food in some ways.
So a picture exchange book brings out a binder and then we made it open the binder and give a few options of maybe what the snack is. So we put the different pictures, goldfish crackers, Oreo cookies, jelly beans, right. We put it on the front of the book. And then the idea is that a student will take the picture off and give it to someone in order to communicate I actually want to jelly beans right now. So the problem with that type of an approach is that every time I decide to put vocabulary on the front of that book, it's presented differently every time. So maybe it's jelly beans, Oreo, a goldfish, but then the next time the child sees it, it's goldfish jelly beans, Oreo.
So, you know, when kids are learning how to use any type of AAC system, they're either relying on what's called visual discrimination, scanning what's in front of them seeing the, either pictures or the icons of the vocabulary and, and making a selection. [00:08:00] Or they're relying on, what's known as motor planning.
So motor planning is our, our, you know, brain learns a pattern for how to get to a specific icon. So let's kind of switch over to think about high-tech AAC for a second which is just an iPad that has lots of different icons with words on it. We all have smartphones and in 2022, so thinking about how do you navigate to Facebook on your phone? I can navigate it without even thinking about it because unfortunately I spend way too much time on social media, on my phone. Maybe like everybody else. If I pick up your phone to find Facebook, I can't think I have to actually look for that blue icon defined Facebook, or I need to search for Facebook and then it comes up for me. I can't, I don't have the motor plan for Facebook on your phone because I've only practiced that location on my phone and I've practiced it so many times that I know exactly where it is and not have to think about it. So kids learn the motor plans for the vocabulary.
So again, the problem with [00:09:00] PECS is every time, jelly beans is in a different spot instead of having either, you know, a communication board where it's a kind of static display or a iPad where it has jelly beans is always in the top right hand corner. It's never going to move. It's always going to stay there.
And so you take the kind of burden off of thinking about, where is jelly beans?. I need to find jelly beans the same burden that would be if I picked up your phone and was like, where is Facebook? I can't find Facebook right now. Like, think about how frustrating that would be. Every single time you're communicating, you have to search and think about it.
So, you know, we're also at time thinking about students who have attention challenges and all types of sensory regulation issues, all of these things that we add on top of the burden of communication. So I just believe let's make communicating easier for kids. And one week we can do that, is that the icons, they learn where they are by repetitive practice and they don't change.
They don't change. And I think that that's one of the biggest problems I see again, with PECS is that [00:10:00] every single time you see it, it's different. And so you have to rely on scanning and looking and think about how cognitively demanding that is. You know, there's other problems with picture exchange, mostly it's like not robust.
Like where do you go from, you know, being able to request your favorite foods and toys? Like, how do you say, like, I don't like that? I mean we're typically only seeing nouns when we're thinking about picture exchange. And we know we need lots of different parts of speech in order to build sentences, communicate to the fullest potential.
And so for me, PECS is only a short term solution and you don't need to start with PECS. Like you can start with the long-term solution. Kids are so tech savvy, like so many of the families that I work with. My first question is like, when I'm assessing for AAC, how does he navigate your phone? Like to watch his favorite YouTube YouTube videos or Spotify songs.
And they're like, oh my god, he can navigate like so much better than I can even navigate it. I'm like, yes, autistic students thrive with technology. They understand how it, how to use it even [00:11:00] before we explicitly teach it. So it's like, why are we not using technology like that for students? When we're expecting them to communicate, you know, in a time where we're all using technology, we're all like ordering things on iPads and using our smartphones and, you know, but we're expecting our kids to like pull out a binder with laminated pictures that like end up becoming like gross and soggy and like the Velcro doesn't work anymore.
And like that's how we're expecting them to communicate with us. So anyway, that was kind of, long-winded see, I told you Brittyn, I was going to like talk way too long. But that's kind of the overview with picture exchange is like, It's just a short-term band-aid solution as far as I'm concerned. So why don't we just start with the long-term solution and work our way back so that all the hours and training and all the time it takes to learn how to use this system is spent on a system that we know long-term can be a beneficial.
Brittyn: And I think that's so huge. I think a lot of people, or at least I've heard people say that they think they need to start with PECS to get started. But just like you said, I mean, it's really playing on a child's strength that they [00:12:00] already know how to navigate use electronics, use technology. Why not start with AAC instead of, you know, having to use two different areas to train them in both, you know, PECS and AAC. It just doesn't make sense. So that made a lot of sense. I mean, I pick up my husband's phone all the time and I'm trying to find like the photos app and I get so upset because I can never find it. It's not where I want it to be.
And I couldn't imagine being a child who also can't explain, I feel really frustrated right now just because I can't communicate or I can't find the button I want. So it makes so much sense. I love the way you explained it.
Rachel: Yeah. And then we wonder why our students don't want to communicate with us. And they're like, oh, like they just can't do it or no, it's because like we're making it harder than it has to be for them. Like, let's make it easy for them. And presume that they're capable of using technology, which oftentimes the roadblock for high tech AAC is.
And the reason we start with low tech or picture [00:13:00] exchange, is because we just can't possibly imagine a three-year-old being able to navigate a device in order to communicate. It just feels like, well, let's start with these pictures. And it's like, well, no, let's presume that they can do it because they show they can do it with YouTube and, you know, Spotify and all these other.
You know, let's presume that they can do it and teach them how to do it.
So yeah, I'm just like a really big advocate for just presuming and the potential that a student has and teaching them how to use, you know, this fancy iPad that you know, has all these screens and is a dynamic display and you know, all of these elements we just need to actually teach kids how to use that.
And oftentimes they can be successful even without us teaching it. So many times they put a device in front of a student during an assessment and I'm shocked at how well they're using it without any teaching from me. It's like, I might have the model at one time and they're like, bam, bam, bam. Got it. Like, they're communicating with me.
And I'm like, wow. Like, so if we know that, it's like, why can't we think about [00:14:00] introducing high-tech and robust AAC sooner?
Brittyn: So true. And I, I hear a lot of parents, they have this misconception that using AAC is going to prevent the child from talking. And I've heard you say talk about this misconception before, but we'd love for you to share more on.
Rachel: Yeah, So, you know, we don't have any research that supports the idea that if a child is introduced to AAC, that their verbal speech will stop. In fact, we have, we have research that shows the opposite. It was kind of an incidental finding in one study and they found that with the introduction of AAC, students started verbalizing more approximating more words.
And that's what I find in my own clinical practice. You know, but the reality is this. Children will choose the path of least resistance, whatever becomes easier for them to communicate is the modality of communication they will use. So sometimes it's dependent on a lot of factors. Like how much sleep do they get?
You know, are they hungry right now? You know, how much familiarity do they have with the [00:15:00] word? All of these things can, you know, determine whether or not a student will choose to use verbal speech or will choose to use AAC. So it's my job to give lots of options, lots of modalities of communication and teach lots of modalities of communication.
So that, that the individual child gets to decide in whatever moment. It's easier for me to say this, you know, on my AAC, or it's easier for me to just say this verbally because the reality is, if it's easy to say verbally, that's what students will choose because that's the easiest thing in that moment then to go find your AAC, bring it to you and start plugging away and building a sentence.
You know, but the fact that kids don't always th the fact that kids choose to go get their AAC tells me that they don't, it's not easy for them to communicate that verbally. And again, we know this from there's two episodes, actually three episodes on our podcast with part-time AAC users. So these are adult autistic adults who use AAC sometimes.
So on the [00:16:00] podcast, you hear them, they're using verbal speech, but they talk about their experience with, you know, a certain percentage of time they, they lose their ability to speak verbally. And so if we know that that is the case for some autistic adults and we need to have some type of backup modality.
And the unfortunate thing is that for these people that I had on the podcast, talking about part-time AAC use they didn't, they didn't get introduced to AAC until they were adults. You know, we have the opportunity to introduce this to students who are really young as a way to say whatever form of communication you choose is valid.
And we want to hear whatever it is that you want to say. However you want to say it. And that could be pointing that could be using a word that could be using the AAC. You know, really any modality of communication should be accepted. You know, so I, I really think about that idea of part-time AAC use.
The other thing I like to tell parents that are worried about a child using, losing their verbal speech. You know, one, if we support all modalities of communication meaning when you [00:17:00] say it verbally great, like we don't need to say it on the device, I'll model it on a device without expectation that you say it on the device.
You know, but we're still supporting whatever modality they choose. You know, but it's really putting them in the driver's seat. The other thing that's really important to remember is it's, it's all about access. So let's cause cause typically it's students who have some verbal speech, right? If a child's completely non-speaking it's like, yeah, AAC makes sense because they have no words.
But it's for these students who have some verbal speech it's really about access. So sometimes they have access and sometimes they don't, you know, for the times where they don't have access, we need some type of alternative system so that they are able to communicate fully.
Brittyn: Yeah, that's huge. And I had never thought about part time AAC use and it makes so much sense as to, you know, those kids also, who do have verbal speech still using AAC to further that communication for them is huge.
Rachel: The other thing I'll mention, which I think is important to think about is that we all use AAC. Like we all don't feel like getting on the phone [00:18:00] with someone. So we send them a text message, or we're trying to say something funny in response to our friend. And we send a gift that represents some type of communication, that's symbol based.
Right? So we're all deciding at any given time. And I got to meet this person for coffee? Am I going to have an email exchange? Am I going to text them? You know, we're all using multimodality communication. So it's no different for our students. It's just that they don't have as consistent access to verbal speech or any access to verbal speech.
So they need that system. We get to decide what systems we use the same should be true for our students.
Brittyn: Wow. Wow. Yeah. I mean, that's so true. Another thing I've never thought about. That's incredible. The last question I have for you and linking this back to nutrition, have you ever uses AAC for kids who have limited diets, or have you ever seen it to be successful with nutrition?
Rachel: Absolutely. I feel like, you know, one of the most powerful things that we can do with students who don't have access to consistent verbal speech or any verbal speech is [00:19:00] set up some type of system where they're able to start learning how to communicate about their bodily sensations. And I'm sure in the work that you do, Brittyn, it's like.
And, and all of the clients that I work with their families are like, I don't know when they don't feel good. I don't know when their bellies upset. I don't know all of these things that would be so invaluable to know when you're trying a different diet. You know, when you're seeing all types of behaviors come out and you're like, what is really at the root of this?
Like maybe they don't feel good. Maybe they're having some digestive issues. Maybe they didn't sleep well the night before, you know, so I really believe in helping kids start to learn how to advocate for how their body is feeling and the best way to do that is start modeling that language. And the reason the AAC is so powerful is that, you know, our speech that comes out of our mouth, it's a femoral it's fleeting.
As soon as I say something, if your ear didn't catch it, then it's gone. AAC and visual supports, they anchor into a visual. So for students, especially a lot of students with [00:20:00] autism have auditory processing challenges. Like the auditory channel is not strong, but their visual channel is strong. And so how do we capitalize on the strengths of autistic students, knowing that their visual channels very strong.
As a way to teach language that slows down the process. It's not as fast and it's not fleeting. It's like, it's still here on this AAC board or device or whatever. And so, you know, kids just need lots of repetition with learning their body parts is like kind of the first thing that I do teaching them, you know, before we eat, kids are probably hungry.
Like what does that sensation feel like in their body? We can teach that vocabulary. You know, same thing with thirsty, like all these kinds of bodily sensations going to the bathroom, you know, these are all things that you can start working on. And I need lots of experiences for students to start understanding what that feels like.
The same way that like any child, like what is frustrated? It's like, well, like when I keep trying to do something and I just keep getting so upset that something's not panning out the way I want it to. You know, all, all children need exposure, [00:21:00] repeated exposure with that experience and the language attached to it, to understand what that means.
The same thing with things like I feel hurt. I feel sick. You know, I'm tired, I'm hungry so we can start teaching all of those things in a way that really resonates again with the visual support to have a lot of success. And, you know, same thing with being able to talk about, you know, self-advocacy like, I like that.
I don't like that. So if you're working with a picky eater, like being able to have the language to say, I don't like broccoli, I don't like it, mom, you know, think about how powerful that is. Now, just because kids don't like something doesn't mean that we don't keep trying to introduce it and trying to, you know, get them more comfortable with it.
But I really believe in, you know, helping kids self-advocate for the things that they like, the things that they don't like for their bodily sensations, all of these things, we can start working. You know, really early on to get again, that repeated exposure to the language and the feeling in my body.
Brittyn: And I completely agree with you. And when it comes down to eating, I mean, the repeated, like consistent exposure to new foods, just like you're learning the buttons of an ADC device. You are also learning to like [00:22:00] new fruits and vegetables. You're learning to like different things. And so giving kids a choice, a lot of time saying, do you want this or this?
And being able to choose between those two things on what they're ready to try, can help them buy into the whole process even more. I was actually speaking somebody else who would be on my podcast, her name is Kiarra. She's a pelvic floor OT for kids and we were talking about not being able to recognize those internal signs of needing to go to the bathroom and then get chronically constipated.
And then you feel yucky, and then you don't have an appetite. And I could just think of even just being able to communicate in those situations would just make that whole experience so much easier to manage for parents and for kids. Just kind of piggybacking on the conversation that Kiarra and I had earlier today.
Rachel: Yeah. And it's like so many times parents especially are coming to me and saying like, I don't know how they feel. I don't know how to help them. I don't know so much because they can't communicate. You know, so if we can give kids the tools to be able to better [00:23:00] communicate those things. You know, think about how much easier it would be to know is that supplement making them tired or helping them.
Right, like, you know, it's even hard for us adults. I know my own self and my own healing journey. Like, does this supplement help? Does it hurt? What am I noticing? You know, and it all goes back to me being able to understand that and then communicate that to whatever practitioner I'm working with. Think about how valuable that would be for all the families that you're working with, introducing things.
You know, we can teach kids how to start communicating about those things. It just takes time. It's not something that happens right away. But it needs repetition in order to learn kind of what these concepts are. And then of course being able to communicate with them. And again, knowing that it's about consistent access to communication.
So sometimes your child might be able to say I'm hungry or I'm thirsty, but maybe their verbal speech is not reliable. And so they need some type of backup form of AAC in order to always have consistent access, to be able to communicate that message.
Brittyn: That's huge. That's a huge takeaway. And [00:24:00] so I think a lot of people are going to wonder how they can work with you and how they can learn more about your services. Where can they find you?
Rachel: Yes. So you can go to my website, rachelmadel.com, which has tons of resources. It, you can definitely find, you know, the, the, the link to work with me and fill out a form that just kind of helps my team know that someone's interested in potentially booking kind of a 15 minute call to see how I might be able to help.
But also on that website is tons of free resources. I have a YouTube channel. I have lots of videos, all about augmentative, alternative communication. So many SLPs go to my website and referred to my videos when they're teaching concepts and getting started. So there's lots of resources on there outside of just, you know, how to actually work with me.
I have the podcast Talking with Tech and our website is talkingwithtech.org. I also love social media. So I'm @rachelmadelslp on Instagram and Facebook. And maybe even Tik-Tok I just started a Tik-Tok because now like reels are taking over Instagram. And so my team who is [00:25:00] much like younger and hipper than me, like we think we should do a Tik-Tok Rachel and I'm like, all right, like, I'm like strapping in for a Tik-Tok account.
So yeah, those are kind of all the different ways to reach, to reach me different kinds of modalities. But if you just Google Rachael Madel, SLP, everything will come up.
Brittyn: And it makes sense that you have all the different options since you're so involved in tech, that you would have all of the social media options. So I love that, that thanks so much for being here, Rachel. I really appreciate it. And I know people have so much to learn from you. I know we could talk for another hour but I'll have to have you on another time too.
Rachel: Amazing. Thank you so much, Brittyn. It's been such a pleasure.
Brittyn: Thanks. Buh-bye.
[00:26:00]
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Transcribed by Descript
ABOUT Brittyn Coleman, MS, RDN/LD, CLT
I’m a Registered Dietitian, Autism Nutrition Expert, and the Creator of the Autism Nutrition Library.
I work with parents of children with autism to optimize their child’s diet, supplements, and lifestyle based on their unique needs. I help expand accepted foods for picky eaters, improve digestion and gut health, find the root causes of many symptoms, and ultimately help them feel their best so that they can do their best and be their best.
Not only do I relate to families on a professional level, but also on a personal level. I have been a part of the autism community for over 20 years, as my younger brother was diagnosed on the spectrum at a young age.
I look forward to working with you to uncover the root cause of your child’s symptoms and help your child be the best version of themselves!
