In this episode of The Nourishing Autism Podcast, Brittyn sits down with speech-language pathologist and AAC expert Rachel Madel to break down everything families need to know about Augmentative and Alternative Communication (AAC). Listen in as they explore the different forms of AAC, why it does not hinder verbal speech, how to recognize communication breakdowns, and practical ways to get started, even without an expensive device or an AAC-specialized therapist.
Rachel also shares how YOU can advocate for your child as a parent or a caregiver, make communication more accessible through everyday routines, and support literacy alongside AAC. Whether your child is just beginning their AAC journey or you're looking for ways to better support their communication, don't miss this conversation full of expert insights and encouragement to help give every child a voice.
Rachel Madel, M.A., CCC-SLP is an LA-based speech-language pathologist who helps parents, clinicians, and educators harness technology to unlock communication for the kids they support. A nationally and internationally recognized AAC speaker, she coaches families and professionals on integrating assistive technology in classrooms and at home. She co-hosts Talking With Tech, a weekly podcast on AAC best practices, and creates educational resources, therapy materials, and courses for parents and professionals.
Connect with Rachel Madel & Explore Her Resources:
Instagram: @rachelmadelslp
Website: www.rachelmadel.com
YouTube: Click Here to Watch
Talking With Tech Podcast (Apple Podcasts): Listen here
Talking With Tech Podcast (Spotify): Listen here
Podcast Blog & Transcripts: Talking With Tech
AAC Lending Library Program Directory: Click HERE to find your state's lending library
Resources & Ways to Connect with Brittyn:
Nourishing Autism Collective: Looking for individualized support with your child's nutrition, selective eating, gut health, supplements, or expanding their diet? Join the Nourishing Autism Collective for courses, resources, recipes, expert guidance from Brittyn and her team, & a supportive parent community. Click HERE to learn more.
Food Hopper: Brittyn's app designed to help parents expand their child's diet by tracking food exposures, building a personalized food list, and discovering new foods based on the foods their child already eats. Click HERE to learn more and start your 7-day free trial.
Free Resources on Nutrition for Autism: Visit www.autismdietitian.com for freebie PDF downloads, free blog articles, podcast episode archives, & additional nutrition resources for you and your family!
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TRANSCRIPT
Hi, I'm Brittyn, a Registered Dietitian and autism sibling. I have a passion for helping parents of neurodivergent kids navigate nutrition and wellness for their child, one small step at a time. Here we'll explore practical nutrition tips, learn from top autism experts, break down the newest research, and share inspirational stories that will empower you to utilize nutrition to help your child feel their best and thrive.
Listen in while picking kids up from school, sitting in a therapy waiting room, taking a quick walk or wherever you find yourself, looking for some inspiration and a friend to guide you along this journey. This is Nourishing Autism.
Brittyn: Hello and welcome everybody to The Nourishing Autism podcast. Today we are doing a really fun podcast, a live podcast inside of my membership, the Nourishing Autism Collective, where I host guest speakers all of the time and bring them in to talk to our members. And recently I've been doing a couple of live podcasts so that I can share some of what we're talking about inside of The Collective.
And we have members who are joining live, asking questions, while we have our amazing speaker, Rachel Madel. She is here to talk to us all about AAC. Rachel, I would love for you to introduce yourself, what you do, and who you serve.
Rachel: Thank you. I'm so excited to be here. I am a speech-language pathologist by trade, and I have a passion for technology and how to use that to support communication.
I work with a lot of autistic clients, not exclusively, but I do a lot of work in the realm of AAC, Augmentative Alternative Communication. I own a private practice in Los Angeles, where I do a lot of work in the space. I also do lots of speaking events. I have a podcast called Talking With Tech which Brittyn, you've been on.
And I am really just excited and eager to share about everything that I've learned. And I'm a practicing clinician, so I'm still practicing and I'm still learning. And I think that's the coolest part about what I do, is that, I'm constantly evolving in my thoughts, ideas, and my clinical work, and I am eager to share everything that I learn as I go along the way.
Brittyn: I'm so happy to have you here with us. And you've been on my podcast before, and you've also been a guest inside of the Collective before. So this is fun to get to have you back, and it's been a second since we've professionally talked. But I've been picking your brain recently too because I have now a new personal experience with AAC because my husband, who was in an accident and now has a brain injury, has been utilizing AAC.
And so it's been really interesting to listen to what you have to say in this new light, where I have it for my clients and then I also have it for us personally. And I even brought his AAC with me here today, and I have some of our low-tech options too, just in case anybody is so visual like I am.
And so maybe that'll weave its way into the conversation. But, I'm so happy to have you here. And I really would like to start, like back it up so that I make sure everybody here and everybody who's listening understands what AAC is because I think that it has, I don't wanna say it's been a buzzword, but it has been for man, five or six years.
I feel like everyone's talking about AAC, and I don't think that most people really understand how many options there are and that AAC doesn't just have to be a device, even though devices are incredible tools, and what that really looks like to use AAC. Could you explain what it is and who could benefit from it?
Rachel: Yeah, I think you make a good point. It's like especially now when we think of AAC, we think about high-tech speech-generating device, right? Like a tablet that has icons, that says words. AAC really is an umbrella term that encompasses any other alternative form of communication beyond verbal speech.
Some people would include American Sign Language under that umbrella. Definitely paper-based supports, like core boards, choice boards, letter boards, like all of that encompasses AAC. And the definition itself, Augmentative and Alternative Communication, "alternative" is for individuals that don't have any spoken language, but there's a huge population of individuals that benefit from the "augmentative" piece of AAC, which is, "I have some verbal speech, but I don't always have clear and consistent access to that verbal speech," or, "I don't have intelligible verbal speech."
And so I'm always interested in the population that does have some verbal speech but doesn't always have access. And I think that's a gray area. When we have an individual that's non-speaking, AAC becomes very clear because it feels like the only path. But there's such a huge population of individuals that benefit from having another means of communication.
And on my podcast, I've talked with autistic adults who are part-time AAC users, meaning sometimes they use verbal speech, and other times they are bringing a device out, they are spelling, they're using all different forms of communication. And, for whatever reason, in any given moment, it's an individual's right to decide what form or modality of communication they want to use to express themselves.
So really the way I look at AAC is holistic. It's all-encompassing. We are multimodal communicators, and so my work with clients is figuring out how to support different modes of communication in different moments with different vocabulary. And that's been such a learning curve for me as I've talked to adults that use AAC.
They have multiple systems. It's not just, "I have this one device with this one app." It's like, "I use this app and this system for one type of scenario, and sometimes I use typing for this situation. And sometimes I use my verbal speech if I have some verbal speech or gestures."
And so I'm really encouraging people to think more holistically about AAC because very easily it can just be like, oh, the device. Yes, and there's all these other things that we can think about too.
Brittyn: Yeah, I love that. And again, that personal experience too, like my husband's learning to use an AAC, but it can be really overstimulating and frustrating to learn and tiring. And so sometimes using the low-tech option can be really helpful for him on a trickier day. And sometimes on the trickiest days, it's like hand gestures, and like doing his best to communicate that way. So that totally makes sense to me, and I think we do just go straight to tablet when it's like there can be so many different options.
What I wanna address head-on is one of the biggest misconceptions about AAC, and I bet you can already guess what I'm about to say. Yeah. But my biggest thing is a lot of people will say that AAC gets in the way of verbal speech and takes the place of verbal speech. So if a child's learning, trying to learn to speak out loud, you shouldn't use an AAC because it provides this other thing.
Can you debunk that or tell us more about that and how we should be thinking about that?
Rachel: Yeah, it is arguably the number one concern parents have when they come see me especially if they have a young child. Especially like a two-year-old, a three-year-old. It's like " no, we wanna focus on verbal speech."
And my response to that is, we can support all modalities of communication simultaneously. And the truth is, students or children will use the path of least resistance. So if verbal speech becomes easier than AAC, guess what? You'll start hearing verbal speech more. There's a reason that kids are choosing AAC in a given moment and we can support verbal speech alongside of learning language through AAC.
I like to show kids all the different options and show parents. And kids will show us at any given time. And I've had so many situations where a child is basically non-speaking and we start using AAC. They start learning language, and they start imitating the device. They hit a word on the device, and they start trying to say it.
Sometimes kids just spontaneously start talking. I would argue that having the device is always important to keep learning language and to have as a backup because what we hear, especially from autistic adults, is that, "I don't always have consistent access to my verbal speech, just depending on what's happening in the environment, my regulation, my emotions."
And so it's really important to give kids access to different modalities of communication and let them be the ones that choose in a given moment what they're going to use. The other thing I like to think about is, we can support that verbal speech development but typically one of the challenges with why we need AAC to begin with is motor speech challenges.
Motor speech is the most complex motor movement we have as human beings. It is so complex. It's like we are coordinating breath and precise motor movements of our mouth and all of the different speech sounds that go into words. It is so complex, and it is challenging, which is oftentimes why we see kids not necessarily using verbal speech or not using it consistently or having speech intelligibility challenges.
So as verbal speech develops, we don't want kids to fall behind with language, and that's where the gap becomes wider and wider. When we're starting with a two-year-old or a three-year-old, it's like, okay, we're working on verbal speech. Maybe it's coming or maybe it's slow, but all of the time that we're spending trying to develop words and the motor plans for speech, kids are falling behind not being able to practice language.
And the more complex the word, the harder it is for them to motor plan through it verbally. Paw Patrol, that's a show that a kid could love watching, and because it's multisyllabic, they might not be able to say it with intelligibility. Doesn't mean they shouldn't be able to access that language in an alternative way to communicate the same message.
And this is where kids can start getting incredibly frustrated because the motor speech is the thing that's blocking them from saying that their tummy hurts, or they wanna watch a different show, or, they miss their mom. Like, all of these things are why language and language development is so important alongside of working on the motor speech component.
And you can do both at the same time. It's not if we practice using AAC, it means verbal speech will never develop. But oftentimes there's a huge motor component to why speech is not developing, and that's where we really have to fill in the gap with language and language learning.
And what's cool is that if you do it at the same time, the moment kids start really getting the motor planning for verbal speech, guess what? They've had sometimes years of practice using words, asking questions, answering questions, building sentences with AAC. They just start saying those words, right?
So it's such an important piece that I try to explain to families, especially when they first come see me just because we don't want kids to fall behind language-wise with the ability to use words, build sentences, answer questions. We can do all of that at the same time, and that's how we get the best outcomes.
Brittyn: How would you get started with helping a parent understand how to advocate to their maybe speech therapist who isn't familiar with AAC or only uses it for kids, 'cause I know not everyone specializes, or maybe to their doctor?
Like, how do we even get our foot in the door with convincing our support team that it's something that's necessary? Like, how do parents get started with that?
Rachel: Yeah, I think it's like the kids that really fall between the cracks are the kids that have a lot of verbal speech that's very echolalic, meaning they're repeating a lot, but when it comes to communicating a message that's understood by a listener, there's incredibly challenging breakdowns.
They're either scripting from their favorite movie and no one's understanding what they're trying to say, or they're just repeating back what they're hearing, but they're not initiating communication in a way that's being understood. That kind of sliver of the population is one of the hardest because they have lots of verbal speech and lots of verbal imitation abilities, meaning they hear speech, they repeat it back to you, but it doesn't mean that they actually are initiating with communication that's understood by a listener.
And it's like those are the kids that can get really stuck. So big advocate of AAC in those scenarios because you can break down the process of learning words, changing word order and how that changes the message. Like, all of those things make language visible. Our speech is ephemeral.
It's fleeting. The moment I say a word, if your ear didn't catch it, process it, and understand it, it's gone. AAC slows down that process. I can say something, and then I can show you with a visual. I can show you with a symbol and a word, and I can build that sentence, and I can delete that word and change it to a different word.
I think that process of making language visual for kids helps them get unstuck, especially if they're stuck in a rote script or something like that. That can oftentimes be a sign of a motor loop, right? I'm stuck saying a word or a phrase that I can't stop saying, but the moment I have an AAC device, I'm like, "I'm not trying to say milk, I'm trying to say juice."
And I can go and navigate to the folder to find juice. Even though my mouth is saying milk, I'm actually trying to say juice, and now I have a way to reliably say that to you. So the best way to advocate for that is to share the breakdowns. I think so often it's easy for a teacher to be like, "He has lots of verbal speech.
Why would we need this?" Let's talk about the breakdowns. Let's talk about what does this student say when he's really upset or when he needs a break or... you can oftentimes shine a light on the breakdowns and the frustration, like when kids are getting frustrated, as a way to show they're stuck in a script, or they're not.
Their communication with verbal speech is not matching their intention, like the example I gave. Saying milk over and over again, but really meaning juice. You give them milk, and they're like, "I don't want that." It's like, okay, that communication does not match the context of the situation that we're in.
So it means that for whatever reason, there's a breakdown. This kid is not sharing what's going on inside internally in an expressive way that makes sense to an outside listener. And so I think highlighting some of those areas can be a foot in the door. But I will tell you in my own clinical work, like this is what I specialize in.
I hop into IEP meetings all the time to advocate on behalf of my clients, and I'm always fighting. I'm always fighting for this. I'm always trying to get even the SLP to understand why we would want to use AAC. I think it's just obviously I have a lot of awesome experiences that I can share about, the kid was saying this, and then we used AAC, and then they did this.
And I can share that very easily and try to get people to buy in. But I think for a parent that's trying to advocate on behalf of their child, I think one of the best ways is just highlighting the breakdowns in communication. And that's something that is pretty obvious when you start zooming out and looking at a student in front of you, you can start seeing, okay, here's a breakdown, here's a breakdown.
It's the number one question I ask families when I get started with them. I'm like, "Tell me where the breakdown's happening." And they're like, "I have a whole list of breakdowns." And so I think that's a way to get your foot in the door with AAC.
Brittyn: That's a great tip. And my thought then too is okay, so if their whole community isn't totally on board with AAC, they don't have experience, in fact, Ellie just said in the chat "our SLP at school has no AAC experience".
So how are we helping the child learn when their whole care team isn't well-versed in AAC? How do we even get them going? Is it the parent who's learning online to teach them? 'Cause I feel like parents have so much on their plate already and are caregivers to then teach AAC and they're not speech therapists or speech pathologists.
Where do parents turn when they don't have that person in their circle?
Rachel: I know. I think it's really challenging because, as I mentioned, sometimes you have to try to convince an SLP that AAC is warranted which is crazy to me. But I will say one thing I share with parents is that, because I do a lot of work parent coaching, and so I work alongside of parents, I'm like, "You are the quarterback of your child's team."
Everyone else will be a revolving door. You'll change speech therapists, you'll change teachers, you'll change, everybody will change, but you are the constant. And so a lot of the work I do in my clinical practice is coaching parents. Because parents, I know parents have a lot on their plate, so I understand the burden.
However I typically do six-week coaching cycles where we meet for 25 minutes, and we just do it for six weeks. In just a short amount of time, I'm able to teach you so many strategies that you can use every single time that you engage with your child so that they don't need speech therapy four times a week.
They actually just need the people in their life who are with them the most understanding how to model language on AAC, how to scaffold that support, how to give just enough prompting, but not too much. And then you're able to vet any SLP that comes into your child's life, or teacher, or whoever, to understand who really understands my child and understands this, and who, bless their heart might have good intentions, but just doesn't understand it and advocating to have the right team in front of your child.
I'm working on a parent course because I have so much passion for just teaching parents. And I do a lot of work with my courses right now teaching other SLPs because I'm also passionate about SLPs learning this. But yeah. I think that just learning even some basic strategies and just learning how to model as an example, like that skill is something that takes practice, but can go such a long way.
I think that parents sometimes have this idea that I have to do the best speech therapy. I have to have speech therapy a couple times a week to have progress. And, I see lots of progress with kids that don't have a lot of speech therapy or as Ellie mentioned, their SLP doesn't know AAC,
who can still make progress. It's about the types of engagement and interaction that we're getting with the child and the AAC. It's about the quality of that, not about they have to be in speech therapy. And I would argue that speech therapy in a traditional sense, like we take the kid to the speech therapy room, or we go to the private practice to get speech therapy. That, we have a really hard time getting those skills to generalize outside of the therapy room.
So I'm a big advocate of just embedding the work into the child's life, going into the classroom next to the child and teaching the paraeducator how to model language, or the teacher. Going into the home to be alongside of a parent to help them through an activity. So anyway, I think the more integrative we are with how we're approaching AAC and thinking about all of the key players on the team and making sure they feel supported. Obviously this is the way I think about my own clinical work, and I know that not every speech therapist knows about AAC and definitely doesn't know maybe how to teach the whole team about it.
But I've had parents have a lot of success with just sharing some really basic strategies that they've learned along the way for their child and getting people to better understand what types of things work, what we've tried, what we're currently working on. I think that integration piece is key.
Brittyn: So true. I think equipping everybody in their circle, doesn't have to be a speech therapist. I think that oftentimes, just like you said, it's the disconnect. It's like making sure that all the people around them are understanding, even just on a basic level, on how to support them. This goes with food too, like understanding what is a low-pressure way to expose kids to food, and teaching their grandparents, teaching caregivers on how to do that can sometimes be even more impactful than just going to feeding therapy and that's all you're doing, and you go there and you come back, and that's it.
So integrating it into your daily life, that's huge. So with AAC, of course these devices can be very expensive. We're trying to qualify for a Tobii Dynavox, which they told me, out of pocket is $16,000-17,000. Of course you can do a low-tech AAC. You can download something. And, like, where do parents start? Do they download an app? Do they download something off of your website or online? Where do they go to see if something's going to be a good fit for their kiddo?
Rachel: It's a great question. So yes, I have a lot of resources on my website.
We have a whole freebie full of kind of AAC resources.
Brittyn: Yeah.
It's amazing. I've been in there so many times.
Rachel: Thanks, Brittyn. I will say one of my favorite things... So oftentimes if we're thinking about autism, let's hone in on that population, right? What is the one thing that we want our autistic kids to be able to do from a communication lens, in my opinion, is self-advocacy for their regulation, right?
What do they need in moments of dysregulation? And typically people pulling out like an emotions board. "Tell me that you're angry," or, "You're frustrated." Yeah, but then what? What do we do when we're frustrated? What do we need? Do we need to jump?
Do we need to go for a walk? Do we need to listen to music? Do we need to... We need our chewy tube. Do we need our stress ball? There's so many things that are specific to an individual that they benefit from or need in moments of dysregulation. And so one of my favorite things to do is create a really basic paper-based board that can sit on a student's desk that just has some of that self-advocacy.
"It's too loud". What a great example for autism, right? It's too loud, I need a break. One of my favorite coaching questions for a parent or any communication partner for that matter: If your child could say anything right now in this moment, what would they say?
And that helps you think through the lens of the language that they need in these moments. So you see, kids' hands going over their ears in distress. It's like, if they could say anything in this moment, what would they say? They'd say, "It's too loud," right? Or, "I need my headphones." So thinking about those moments where kids need language and don't have it, reverse engineer and be like, okay, they'd say, "It's too loud."
They say, "I need a break." You can think about your child and think about the language that they need in those moments. And then now with AI, you just pop in a prompt and say "Make me a communication board that has these phrases," right? There's other tools and things that you can use, but it's never been easier to make paper-based AAC at this point.
So anyway, I would say that would be something that everyone listening could have for their child, and I would also take it a step further and argue that having that on a child's desk, even if they have high-tech AAC, is important because in moments of dysregulation, sometimes a device can be even more dysregulating, right?
I need to get to the device, and there's all these words, and I have to tap tap. And so I actually like having a paper-based version accessible. One, I think it's easier for kids to just point "I need to take a walk." It's right there. They say it. We honor it. I also think it's an excellent reminder for the people that are around that student of all of the strategies and language that they should be modeling in these moments so that kids have more access to that language.
I think on the device it's easy to, like one paraeducator's like, "Oh, looks like you're mad," and they model mad, and the next paraeducator's like, "You wanna be all done." And it's fine to do that, but we want to simplify it, and we want to get really clear on the language that we're using.
So that's why I like a paper-based kind of board for self-advocacy like that. And you could have the same exact words on the board in the device, too. It's just another kind of representation of that language. So I would say that's a really good place to start. And there's core boards and things like that.
Every high-tech AAC company, Tobii Dynavox, PRC-Saltillo, they all have core boards or paper-based versions of the high-tech device. So because I'm a big advocate in eventually getting kids to high-tech AAC, it's more robust, it's just way easier. You start having all these boards, then how are you organizing the boards? High-tech AAC tends to be more robust. It includes a keyboard for literacy and it's just easier as kids get older and build more language. But one of my favorite questions is what AAC system do you know the best, teacher, paraprofessional, SLP?
Typically certain areas have different kind of AAC systems that are recommended more frequently. So like in Southern California, it's Proloquo2Go. That's the one that everyone's recommending. But in different parts of the country, it's different. So figuring out what will likely be recommended in the future, whether that's in the district or in the area.
And then it would be like, if it's Proloquo2Go guess what? AssistiveWare has a core board that matches that high-tech system. 'Cause we have to remember that kids learn the motor plans. They know that all done is in the top right-hand button of that board that eventually maps directly onto a high-tech device.
So we would want to, if we could, start learning those motor plans on the paper-based system, and then that easily transitions to a high-tech device over time. You don't always have that information, so I'd say you don't have to have that to get started. The most important thing is that we start giving kids access to language.
But in an ideal scenario, I would be thinking through the lens of what eventually do we wanna get to? Okay, what paper-based system can we use to support that motor learning?
Brittyn: I love that. I feel like a lot of people have been getting into the spell boards and utilizing that as a form of AAC, especially in the autism community.
So what would you say of a picture-based board or just a regular old ... we actually have one like this where it's just the alphabet, like spelling. What do you see is the most helpful? Is it case by case? What do you notice?
Rachel: Totally. I love asking autistic adults, right?
I'm like there's no better people to ask than people with a lived experience. Some autistic adults have said, "You know what? Spelling is easier for me." "Spelling is easier, especially when it comes to learning the motor plans." And then I've also heard autistic adults say "Symbol-based communication's way faster."
So I think it just depends, and everyone's different. Ultimately, I think all AAC users, all kids, need to learn literacy, and our AAC students are the most vulnerable to not being taught literacy skills unfortunately. And if you don't teach an AAC learner literacy, they can't say everything they wanna say, 'cause we can only program so many words into a device.
And, these devices have thousands of words, but they don't have every word, and they don't have the name of their favorite peer in their classroom that's spelled differently. So you really need to have access to some type of letter board or keyboard and then be taught literacy skills.
Another area I'm super passionate about is literacy and AAC. But literacy is such an important piece to being able to say whatever you wanna say to whoever you want to say it to. And if you have literacy skills, you can combine using symbols and typing. Like if you or I were to pick up an AAC device and start using it, if we were gonna be the fastest communicators, we would use a combination of the words on the homepage, and then if we're trying to spell umbrella, we're not gonna go through the device to try to find umbrella, we're going to just type it, right? And so the best situation for an AAC user is having access to a keyboard or a letter board in addition to symbol-based communication and really promoting literacy learning. Because the moment kids start picking up literacy skills, they can't find a word in their device, but they start trying to spell it.
And sometimes it's phonetically spelled, which I actually love, because it shows they're really learning true literacy instead of just I feel like so many autistic kids can just memorize the longest words and sight words. They see elephant one time, and they're like, "Nailed it," "I can spell it every time now."
But it's really great to see kids using whatever they have at their disposal to communicate a message. And so anyway, I'm a big advocate of literacy skills and supporting literacy with AAC.
Brittyn: Incredible. So one thing that I wanted to share, I've been writing down notes.
One thing I wanted to share is a question that I have for you. Some states have different programs where you can rent an AAC device. We have that here in Oklahoma, and that's how we actually got connected to our AAC device, because it takes a long time to go through insurance.
And here in Oklahoma, it's called ABLE Tech. It's literally just a library of AAC devices, and they have a lot of other things too, and you can rent it for free for a six weeks period, and we just extended ours 'cause we're trying to go through insurance right now, and it's taking a second.
But I was wondering, do you notice that most states have that? What are other ways that maybe parents could get their hands on a higher tech device if they don't have the ability to go through insurance or are not able to pay for something out of pocket?
Rachel: Yes, every state has a lending library, which is exciting. And I can send you a resource that has every state listed and the direct link to their lending library, which is a great way to get these loaner devices in the hands of individuals that want to trial them. I will say that you typically can get the device and then you oftentimes need an SLP in order to get it funded through insurance meaning you get connected to the company and the device rep, who probably is an SLP. Usually they're SLPs, but then you need a treating SLP to write the report and things like that which is easier than you think.
They make it really easy on purpose because they're trying to get these devices in the hands of people that need them. You don't have to be an AAC specialist or expert to do that process. They really hold your hand. So I would say lending libraries are great. Also, requesting an AAC assessment through your school district.
School districts are required to provide access to the curriculum, and if your child has limited language or of course, if they're non-speaking or minimally speaking, that would be a really great route to go down. There's lots of different ways that you can get access outside of just going to a private practice and finding someone that takes your insurance and things like that.
You have the right to request an AAC assessment as a parent, and sometimes you have to advocate though because sometimes the assessment will come back and it'll say "Doesn't qualify" or "Not ready" or, "Not necessary."
I oftentimes get those cases that come to me, and I'm like, "Okay," "I'll step in here and help advocate on behalf of the family." But yeah, I would say those are all kind of good steps to take if you're trying to just get access to a device.
Brittyn: Amazing. I have two last questions. One would be, how long, first of all, does it typically take a child to learn to utilize AAC?
I know that's a loaded question. But then also, how do you orchestrate it when maybe a child has a shorter attention span in utilizing an AAC? And how do you walk parents through those initial challenges of that hurdle, of them also learning AAC when you're first getting started, 'cause it can be frustrating for sure.
Rachel: Totally. I'll start with a story that shocks people. I once was working with a student where they did not touch the AAC system for an entire year. We modeled AAC, but they did not touch it. And so everyone was like, "What are we doing? This isn't working." I'm like, "What else are we gonna do?"
The child was completely non-speaking, and I'm like, "Listen, don't force them to. Don't put a bad taste in their mouth, but just start modeling." And one day the child started using the device. And not only that, but had been absorbing all of the modeling they had exposure to that whole year.
And so it can be incredibly frustrating. It can be like people are like, "This isn't working." Or another great example: child stimming on the device, right? Just saying random words, nothing intentional seeming. I've also had that story, where like student, autistic, four years old, just stimming.
Everyone's calling me like, "They're just stimming. They're not using it functionally." Over the course of four months, that child had learned where every word was on their device. It was the most incredible thing. I could say "horse," and they would be like, bam, horse. No matter what word I said, they knew where it was.
They had basically memorized the device. It was the craziest thing. One day the stimming just stopped, and they knew where all the words were. And so both of these stories demonstrate, one, it's variable as far as how long it takes for a student to start learning and using AAC.
But I like both those examples because it demonstrates how we have an expectation when we put a device in front of a child that they will just start using it. And whether it's "I saw a Dateline special five years ago where an individual was locked in and we put a device in front of them, and they just started speaking", that's not typical. It takes years of learning language through modeling and seeing language used in order for kids to start using it. Do you once in a while get these locked-in cases that have incredible language skills, they just needed the technology? Yes, I've seen it firsthand, and it's incredible.
But that's not most kids, right? Most kids need exposure. They need lots of learning and opportunities to learn. And kids will choose when they're ready to start using it. The other thing I'll say is that you want to make sure that you're finding the most motivating thing for them to talk about.
It's not what color do you want? Markers, right? And then I'm like, "Oh, they really like art." And the parent's like, "No, they hate it." I'm like, why was this the thing the SLP used in an AAC assessment? If they don't like colors, why would we use that as the activity when we're trying to assess AAC?
So when parents come to see me, I'm like, "Bring their most motivating thing." Like, they're obsessed with jelly beans? Great. I mean not for your kids. Not for this podcast, but truly we have to find the thing that the kids are the most excited about to see what they're capable of.
You mentioned attention. Guess what? If a kid's jazzed about jelly beans, they will find jelly beans no matter how many icons are on the screen. They will have attention for the jelly beans. That's important from an AAC lens because in the beginning stages of language learning, we're trying to give kids the most motivating things to communicate about, but as kids continue to learn language, sometimes they have to communicate about things that aren't as exciting.
But in the initial stages of language learning it has to be the most motivating thing. And so that's one area where you wanna get buy-in with a kid that this device is so awesome. It's so great. This magic box that just gets me fun things and activities and the people that I love, and so it's really important to start there.
Otherwise, if we make it very much, "What color is this? What is this?" Like very compliance-driven, then kids won't buy in. They'll be like, "This is work. I don't like this. I'm not doing it." And so we won't actually get a good read as to what the child's skills are in learning. And if they're not bought in, guess what?
They're not gonna look like they're paying attention, 'cause they're not interested. You're trying to get them to communicate something that they're not that interested in communicating. And so I think that's one of the super, super important things is to find the most motivating thing and build off of it.
Especially when it comes to attention challenges, like, that can be really hard. And you might have to mask some of the vocabulary. That favorite word, there's only a couple words on the screen for now. As kids start practicing the motor planning and understanding how to navigate the device, that's when you would keep revealing more and more vocabulary.
But sometimes just starting small with the most motivating thing, activity, person. I think that is really where I start clinically, and I see a lot of success when I'm really thinking "what does this kid wanna say?" And sometimes it's, like "all done. I don't wanna do this. I'm done."
But all kids are motivated by something, and it's my job to figure out what that is and then give them the language to communicate it.
Brittyn: Honestly beautiful. Giving kids their voice and autonomy is just of course, powerful whenever they can't speak for themselves. So you have a really amazing job and are amazing at it, of course.
And so it's just really exciting to be able to see this kind of support coming in the autism community, and exciting to see so many speech pathologists who are so interested in learning more. I know that you're teaching speech therapists all day long. Do you prefer speech therapist or speech pathologist, I have to ask?
Rachel: Doesn't matter. Doesn't matter to me. Whatever you wanna say.
Brittyn: Our current speech pathologist corrects me all the time. She's like, "We're pathologists." I'm like, "Okay. Is this like the dietitian versus nutritionist thing?" Because if so, I totally get it. But she also does voice implants and other things
that I think she's very proud of what she does. But anyway, just all to say so grateful for you, and I'm reading through some of the chats, like some final words. But Ellie says, "Rachel's a superstar SLP and has helped my son so much with communication and literacy. So grateful for her and her amazing team."
Rachel: Aw. Ellie has quite arguably the best AAC user that I've ever worked with. So as a son, he's a complete whiz, and yeah I'm so grateful. Thank you for all the kind words.
Brittyn: Chad says, "Thank you both so much. Just starting out our AAC journey." And then Janice says, "Thank you both.
Was just curious about using a device for somebody who had a stroke and is learning speech again."
Rachel: Yeah. I don't work with the adult neuro population, but it's an incredible tool. It's like anything else though. You have to build off of the strengths that someone's showing you.
And when it comes to stroke, there's so many different areas of the brain that can be impacted. But it can be an incredible tool. My mom has cancer and at one point she had a tumor that was impacting her speech and she had really severe aphasia. And I'm like, lucky for her I know exactly how to figure out communicating with her. And so it had me put on an adult neuro hat for a little bit. And I was really grateful that I had so much knowledge that I could transfer to her. So I would say AAC can be incredibly valuable for people that are rehabilitating after some type of neuro traumatic brain injury, things like that.
It can also be incredibly fatiguing, I'll say. You have to really meet people where they're at. And oftentimes with stroke, TBI, it's not just communication that's rehabbing, right? It's like I'm rehabbing my body and motor and all of those things. And so yeah, just being cognizant of that because it can be a long road.
But it is possible to make a lot of progress and get in front of the right team and the right tool. So yeah, that's what I'd say about that.
Brittyn: While you were saying that, I was thinking as just a last thing, I'm gonna show some of the things that we've graduated through
just because I think it might be interesting. I have his like board. At first we started with really simple, just like listing out. And he could do numbers with his fingers. He couldn't point.
But he could do one, two, three, four, and five. So we started there, and I'm talking about my husband Jack, for everyone listening.
But then he started being able to isolate and choose. And so we used something like this and we even had ones that we would like write in. So when he would get really restless, like in those scenarios, like for him it was restlessness and agitation, like " what can we do right now to support you?" And it would just have him like stretch his leg, I guess I wasn't showing the right one. Stretch his leg, go outside, massage my leg, like get in bed. What are some ways that we can support you? And sometimes it wasn't accessible because it was so overstimulating already.
And then we graduated to something like this, where he can type out something.
And then also on the back, this is a little much, but where he could point out something. And now we're trialing our big, huge eye gaze device that he's learning. So just showing what we've been through.
I know that this is such a different population, but at the same time, there's so many similarities. We've learned so much, but again, I just see it all through such a different lens now. And such a huge advocate in my patients or members inside of my membership to utilize AAC in some way or connect with you, somebody who can help advocate and teach them all that can be done and all of that autonomy that can be granted for these kiddos.
So thank you so much. I would love for you to share, I'm gonna share your freebie link to everybody in the chat so that everyone's who's here live can access that, and I'll share it in our show notes as well. But can you share where people can find you and how they could work with you so that they can get this kind of support?
Rachel: Yeah, definitely. Go to my website, rachelmadel.com. Tons of resources on there. Tons of free videos. I have a YouTube channel. I have a podcast that has almost two million downloads, which is crazy. Isn't that crazy? I know. It's like wild. We started a podcast before I even knew what a podcast was, which means it was a while ago.
Brittyn: You were doing it, I think you interviewed me in 2019. I remember where I was for some reason. And so I can like ... but you had been going for a long time at that point.
Rachel: Yeah. So anyway, that is definitely a great resource. My favorite episodes on Talking With Tech are the episodes with AAC users, many autistic adults. You can actually go to our website talkingwithtech.org, and we have a blog. It has three articles on it, but one of them is all of our AAC user episodes. And that, if you're new to the podcast, I would definitely start there. Just hearing from AAC users that use AAC, autistic adults that use AAC, that has informed my practice more than anything else.
So that's a way to connect. And yeah, if you sign up for our freebie vault, we are regularly sending out emails. Any time I do speaking events or courses or anything like that, we update our email list. I'll share my social media @rachelmadelslp. Sadly, I've been hacked. All of my social media accounts have been hacked, and so I'm in the process of hopefully getting them back.
Cross your fingers for me. I will start a new social media eventually if I don't get that one back, but let's just hope that @rachelmadelslp is live and back by the time this airs.
Brittyn: That is so sad. Oh my gosh.
Rachel: I know. It really is.
Brittyn: Ugh, ugh. I hope so, and if not, we'll link what is live and active in the show notes so everyone can get it.
And I just sent all the links in the chat as well. Rachel, thank you so much. It was so good to see you again. Thank you for sharing this with everybody, and I know that everyone's so appreciative to have you here and learn from you. And thank you so much for being such a leader in this space.
It's just so encouraging to be able to see so much autonomy and communication, I mean, just so proud to be your friend and colleague, so thank you for leading the way.
Rachel: Aw, thank you so much, Brittyn. I love the work that you do with families, and it's super powerful. And my other passion is holistic health and I know we've geeked out on that before.
Yeah, I love looking at the whole person in front of me. Nutrition, health, all of those things too. So I think the work we do is complementary, and I appreciate all the kind words. This has been great, and I'm always happy to come in and talk to your community. It's great. So thank you so much for having me.
Brittyn: Of course. We'll have this podcast up I would think next month and then we'll have the recording up for anybody who's in the membership who wants to listen back or who joined late. But we'll keep you updated. We'll tag you in whatever social media you are using at the time.
Rachel: Sounds good. Thank you so much, Brittyn.
Brittyn: All right. Thanks, everyone. Thanks for joining.
Rachel: All right. Bye, guys.
Brittyn: Bye, everyone.
Transcribed by Descript
About Brittyn Coleman, MS, RDN/LD
Brittyn Coleman, MS, RDN/LD, is a distinguished Registered Dietitian and Autism Nutrition Expert, known for her innovative, sensory-friendly feeding approach to nutrition for children on the autism spectrum. As the founder of the Nourishing Autism Collective, and as an autism sibling herself, Brittyn brings both professional expertise and personal understanding to her work. She empowers families with her expert guidance, helping children receive essential nutrients for optimal health and development. Her strategies are tailored to the unique dietary needs and sensory preferences of each child.
Brittyn's influence extends beyond her membership site through her active social media presence and her popular podcast, 'Nourishing Autism'. Her educational content on Instagram, YouTube, and other platforms has established her as a leading voice in autism nutrition, providing valuable resources, practical advice, and a supportive community for parents and professionals.
