Interview between Speaker 1 (Meg) and Speaker 2 (Kelly Mahler)
Episode 44: Autism & Interoception
[Introductory note]
Hey, it’s Meg and I have the biggest news. Today’s podcast guest is occupational therapist Kelly Mahler, and when she and I first started talking we decided that we both wanted to find a way to create huge shifts in the therapy world around how OT’s and SLP’s work with autistic kids. And to do that we knew we needed to reach as many people as possible and really build skills, community, and connections. So, we made a plan, and we want to invite you to be a part of it. Learn, Play, Thrive is hosting two huge, virtual, full-day, live continuing education events about therapy, practice, and neurodiversity. The SLP Neurodiversity Summit will be in October of 2022, and the OT Summit will be in January of 2023. We plan to register them with ASHA and AOTA for continuing education credit, and we will have a truly incredible panel of speakers. If you’ve ever taken a Learn, Play, Thrive training, you probably know how committed we are to our content being informed by the autistic community and neurodiversity-affirming, but ALSO truly relevant to your work and easy to apply in practice. And because we know how hard it is to do things differently all by yourself in a vacuum, we’re building in as many community and connection-building tools and opportunities as we can into this summit so that you can find your therapy people and make the changes in our fields together with support in community. This is an event for you and all of your friends and co-workers. You can visit learnplaythrive.com/summit to make sure you don’t miss out on this truly game-changing opportunity. We want to change the way we work and we want you to be a part of it. So, it’s learnplaythrive.com/summit. We’ll see you there.
[Introductory music]
Welcome to the Two Sides of the Spectrum Podcast. A place where we explore research, amplify autistic voices, and change the way we think about autism in life, and in our professional therapy practices. I’m Meg Proctor from learnplaythrive.com.
Meg:
Before we get started, a quick note on language. On this podcast, you’ll hear me and many of my guests use identity-affirming language. That means we say, ‘autistic person’, rather than, ‘person with autism’. What we’re hearing from the majority of autistic adults is that autism is a part of their identity that they don’t need to be separated from. Autism is not a disease, it’s a different way of thinking and learning. Join me in embracing the word ‘autistic’ to help reduce the stigma.
Welcome to Episode 44 with Kelly Mahler. On this episode, Kelly and I are going to talk about ‘interoception’, which is our ability to understand the messages we’re getting from inside our bodies. Kelly ties this in so seamlessly to neurodiversity-affirming approaches and why and how this is a component of our work we should not be overlooking. So, Kelly Mahler earned a Doctorate in Occupational Therapy and has served as an OT for 20 years. She is winner of multiple awards including the 2020 American Occupational Therapy Association Emerging and Innovative Practice Award, and a Mom’s Choice Gold Medal. Kelly is an international speaker and presents on topics related to the 12 resources she has authored, including The Interoception Curriculum. Kelly has so many truly impactful books and continuing education courses on her website, kelly-mahler.com, which I will link to for you in the show notes, because I have a feeling that after this interview you are going to want to learn more from Kelly. So, when I asked her to describe herself for her bio, Kelly wrote that she is a passionate person who loves to crunch pine cones, cuddle with her two Corgi puppies and cook with her family. I’m really so excited to share this interview with you because it’s truly a missing piece in the work that a lot of us are doing. And I’ll give you a spoiler — at the end of the interview, Kelly’s case study using an interoception lens really hammers home how many of us are skipping important foundational steps in our work with clients around self-regulation and what exactly we can be doing instead. Here’s the interview.
Hi, Kelly! Welcome to the podcast.
Kelly:
Hi, Meg. Thanks so much for having me. I’m so excited.
Meg:
Well, I’m excited too, and I know a lot of listeners are. you might actually be my most requested guest. I don’t think I told you that before. But a lot of people have been like, “Can you please interview Kelly Mahler?”
Kelly:
Oh, my goodness. That is incredible. I’m, uh, I feel a little pressure right now so I hope I can live up to everyone’s expectations.
Meg:
You can and you do, because this is all — this is your work you’ve been doing. And it’s wonderful. And the OT community is just so excited, I think, to have your insights. And Kelly, you’re most known for your work around interoception. Can you tell us a little bit about your story and how this came to be one of the focuses of your work?
Kelly:
Yeah. Many years ago, I was helping a friend. We were writing a project on sensory processing and autism. And at that time, I had recently learned of this word called interoception. I knew it was a sense, and I suggested that we add it to this project we were working on. And my colleague was very excited about it. And so, through adding interoception to that project, initially, I thought interoception was just a toileting concept. Like, I really had no idea. So, through a lot of research, a lot of asking my clients about this thing called interoception, discovered that it is far more than just a toileting thing. Interoception influences so many aspects of our lives. And, you know, my interoception journey has personally affected my own life for the better and it has definitely helped me be better OT and provide better supports for my clients.
Meg:
That’s wonderful. You’re clearly someone who likes to really go deep on a topic once you realize that it’s relevant and meaningful.
Kelly:
Yes, I have intense focuses and interests for sure.
Meg:
That’s great. I mean, what a strength for the work that you’re doing. We need people who can dive really deep into a topic. So, let’s go there. What in the world is interoception? And why does it matter in the real daily lives of our autistic clients?
Kelly:
Yeah. Well, interoception’s most important job is to allow us to notice and understand our inner bodily sensations. So, whether that’s noticing when we feel hungry, or when we’re in pain, or when we’re cold, or we’re sleepy, or we’re frustrated, or anxious, what research has found is that many times these body sensations, these feelings coming from our body, give us clues to exactly what our body needs for comfort and regulation. And so, interoception is the sense within our body that allows us to understand the condition of our body; like, how is our body feeling, and what does it need for survival, for comfort, for regulation?
Meg:
Yeah, that makes a lot of sense. And it sounds like it really has very broad implications, thinking from bodily functions all the way to emotions. It really made me think about a conversation that we had on the podcast with Rachel Dorsey in Episode 26 about autistic people who have trouble identifying their own emotions. And we often start with this activity of matching pictures of faces to emotion words, and you’re shaking your head at me because you know that this starts with identifying how you’re feeling, right? Like, even that journey starts with interoception. Is that interpretation right?
Kelly:
Yes, Meg, you’re absolutely right. It starts with our body. It is not some picture matching phenomenon, or memorizing a flashcard. Our emotional experience comes from our body, and these really rich bodily sensations that give us these important clues to how our body feels and, again, like I just keep saying it, but it is — interoception is so important in allowing us to understand ourselves and what we uniquely need to thrive in the world.
Meg:
So, for, let’s say an autistic child who struggles with interoception, what are some of the implications — potentially, every child is different — but in their daily life, what might the impact of that be?
Kelly:
Yeah, so we know that a lot of autistic children and adults, they can experience internal confusion, they might completely miss their internal body sensations because many times the outer world is pulling their attention outside, right. The outer world can be very overwhelming and so many times, they don’t have the attentional resources to be paying attention to these inner sensations, or they might notice a sensation but they have a hard time interpreting exactly what it means for them. And so, when they have an unreliable inner experience, they can miss important clues as to when they feel sleepy and they need to go to bed, or when they need to pee or poop and get themselves to a toilet on a timely manner, or when they’re starting to grow overwhelmed. So many of my clients are often blindsided by meltdowns and shut downs. They don’t notice those subtle clues coming from their body, letting them know that like, “Hey, something’s going on here.” And so, they’re just completely surprised many times by those intense emotions and feelings.
Meg:
This is so important, because often when therapists see this and miss the interoception piece, we say, “Oh—,” or some therapists will say, “Oh, we need to tack on something to make this more motivating,” right? They’re not getting to the toilet on time, let’s add a reward, or a reinforcer, or some motivating activity, which is really missing the mark of what’s happening with that child. And I know that you have a very strong pro-neurodiversity lens that you use in your work. Can you tie this in to interoception for us?
Kelly:
Yeah, I think the biggest tie is that this interoception-based work is not about normalizing someone. We all have such vastly unique inner experiences. And I bet like what your body feels like when you’re hungry is different than what my body feels like when I’m hungry, and what you feel like when you’re anxious is different than what I feel like when I’m anxious. And we’re both correct and valid in our inner experience. And so, this work is about helping each of our clients to be more curious, and to discover their own inner experience. And it also provides a framework for curiosity of all of those people surrounding each of our autistic clients. I think sometimes, you know, you’re referencing external modes of control or approaches. And this work is all about internal motivation, empowering our clients with that self-understanding so that they have that knowledge to be able to care for their own body’s needs.
Meg:
So, what might that look like? Can you give me a few examples of what the process of fostering curiosity about someone’s internal states? What does that mean, in practice?
Kelly:
Yeah, like one of my most favorite ways is through something we call Focus Area Experiments. And these are just really playful, fun, different activities that we do. They’re designed to evoke a stronger feeling within the body, but in a safe and playful way. And it gives practice noticing the way a certain body part feels. So, we usually chunk all of our work into one body part at a time. So, like noticing the way your hands feel, or noticing the way your feet feels, or noticing the way your heart feels. So, like if we’re talking about hands, we might be doing play-based activities. And it really depends on each client and what their interests are. But I was just supporting a client that loves water play and boats. So, we were like, putting our hands in warm water and noticing the way our hands feel in warm water, putting our hands in cold water and noticing the way our hands feel in cold water; doing different experiments playfully to help our clients connect to their bodies and notice the way that it feels.
Meg:
I love how many things you just tied in there, Kelly, because you were thinking about what is this child interested in, what brings them joy, what do they need to learn to become more curious and attuned to their internal state, and how can we do that playfully, and while building connection.
Kelly:
Yeah, absolutely. And, you know, it’s — I think it’s important too that we always do this work in periods of regulation. Like, none of us are motivated to start noticing the way our body feels if we’re dysregulated. So, that’s the part I see very commonly skipped over. We don’t put a lot of emphasis or enough emphasis in the power of co-regulation, the power of stabilizing that nervous system — all of our nervous systems — so that our clients feel safe enough to attend to their body and how it feels.
Meg:
I was just thinking about all the ways that we, as — or, let’s say, I am a neurotypical adult. I get by, right. Like, I eat before a crisis. I sleep enough. I notice if I’m very anxious, right? But we aren’t noticing our own interoceptive state for so much of the day. And the world is sort of set up for us. So, I imagine, I heard you say that this work has been good for you as a therapist. And that makes a lot of sense to me that this is work we can all do. But given that the world is sort of as easy for me as it could be for almost anybody, and I’m just barely skirting by, probably, on interoception, it seems like a very big drop off for a child who might have a different ability to access that information from their body, and the world just isn’t set up to support them.
Kelly:
Absolutely. And I think it helps us get one step closer at understanding the deep ‘Why’s’. You know, there’s such a push, thank goodness, away from surface observable behaviors, and getting deep with our clients. And especially for the clients that cannot provide insights to their inner experience, you know, we’re doing our best detective work. So, interoception provides yet another science as to, like you’re saying, helping us to understand possibly some of the underlying factors that could be contributing to a potential barrier that they’re experiencing.
Meg:
And you do such a nice job in your work, Kelly, of recognizing, and naming, and acknowledging interoception as one piece of understanding what’s going on for a client. I know sometimes with therapists who have a strong sensory lens, it’s tempting to look at only sensory processing, which is as limiting as not looking at sensory processing, right. So, you describe this as one part of a deep dive into the ‘Why’ behind a child’s dysregulation. But I see your work, and you’re very clear that this is one piece. It’s not the only piece, but we shouldn’t overlook it.
Kelly:
No. And many times we are overlooking it, currently, because it is like the new kid on the block, so to speak. It is the newest sense, you know, it is probably the hottest topic in neuroscience research right now. But we have a lot more to learn about interoception and how it really impacts our daily lives. But yeah, you’re right. Like, it’s not just the only thing we should be focusing on.
Meg:
Yeah, one thing that you’ve talked about, and worked with your autistic colleagues on around and written about and taught on is trauma, which is also another piece that we need to always be considering. How does interoception tie in with trauma?
Kelly:
Yeah, this is something that is being widely explored right now in research. And some of the leading trauma experts in their research are finding that almost every single person that has experienced some form of trauma has some type of an interoceptive extreme, whether they feel so much in their body it’s overwhelming, or maybe they’re completely disconnected or dissociated from their bodily sensations. And we don’t know enough about exactly what’s going on. But it’s enough in the research to definitely be curious about the interoceptive experience in any of our clients that have experienced trauma. And we’re really trying, like you said, with some of my autistic colleagues, we’re really trying to expand our understanding of trauma and autism, and broadening our consideration of causes of trauma and really seeing it through the autistic neurology. So, for example, sensory trauma is not something that’s commonly talked about, but definitely the sensory world feels very unsafe on a daily basis to many autistic people. That’s the definition of trauma — chronically feeling unsafe, right. Tons of social traumas, compliance-based traumas when they’re exposed to horrific approaches out there. So, definitely expanding our view of trauma and then also considering how that is impacting their interoceptive experience.
Meg:
Kelly, what have you been learning from the autistic community, and how has that impacted your work?
Kelly:
Do you have like five weeks?
Meg:
I have the rest of my career to talk about this. Yes.
Kelly:
Oh, yeah. Well, first of all, I learn on a daily basis from my autistic clients, from my friends. And I think one of the biggest things, and this is something that I’ve really started to ponder very strongly, is just how frequent their inner experience is either dismissed, it’s misunderstood, it’s gaslighted. And what is the impact of all of that on their interoceptive growth from day one of life? And, you know, I think there’s some like pretty obvious players here. Like, for example, like we talked about compliance-based approaches. And if you think about what that potentially could be doing to their interoceptive experience on a daily basis, they’re conditioned time and time again to ignore what is their body telling them that they need to feel safe and regulated in order to please other people and get a reinforcer. So, they are being conditioned time and time again to ignore what it is their body needs in order to please others and get a reinforcer. Like, that is completely damaging, right, to their inner understanding. And I think there’s like some subtle things that are happening too that we might not be considering, like, just little things like labelling emotions. Labelling their emotions, like saying, “Oh, it looks like you’re sad right now. What’s wrong?” or, “Gosh, that must have made you feel really frustrated.” I’ve had so many clients say like, “When people are labelling my emotion, and that’s not my inner experience, then I start second guessing myself like, ‘What am I doing wrong? Like, I didn’t feel sad there. I’m not frustrated here.” And so, they start really second guessing that inner experience and many times that leads to this confusion and not really trusting their bodily sensations.
Meg:
Yeah, I’ll reference back to the interview with Rachel Dorsey on social differences again, because she really drove that point home in talking about, as an autistic person, having a therapist label her feelings of excitement as anxiety, and the cascading impact that that had on her. And I appreciate you pointing out that it’s not just the obviously compliance-based approaches that are traumatizing people. It’s insidious. And if we’re not actively listening and working to unlearn the ways we’re teaching masking, the ways we’re teaching our autistic clients to hide or mistrust their authentic experience, and act in a way that neurotypicals expect, instead, we are causing harm. And it’s just so easy to miss all of the ways that we’re doing that if we’re not really doing the work.
Kelly:
Absolutely. And I mean, I have to be the first to admit that I have made these mistakes in the past and I am learning on a daily basis how to get better. Like, I have labelled my clients emotions in the past thinking I was being helpful. And so, I’m so thankful for so many people like Rachel and other autistic people that are teaching us how to be better. And then this interoception science is also coming in to support that movement as well.
Meg:
That’s great. And then the research on trauma and behavioral-based approaches or any approach that teaches masking playing out with the increase in suicidality, PTSD, depression — I mean, we’re hearing it from autistic people, you’re seeing it in the neuroscience research, and we’re seeing it in outcome research. So, you know, there’s just no doubt left that we have to move past this as quickly as we can and start doing something different.
Kelly:
Absolutely. There’s zero doubt. Like, we need to stay with the times, for sure.
Meg:
Okay, so a lot of our listeners on the podcast are speech language pathologists. How does interoception relate to speech therapy practice?
Kelly:
Oh, so many ways. My speech therapy friends love interoception. So, I guess maybe one of the most important reasons why is that interoception is our neurobiological foundation of all social emotional learning, and so I think that like, just really hits home with a lot of my speech friends. And also, just like even small things. Like, there’s some really neat research showing that interoception helps give emotion words concrete meaning. So, if you think about that on the reverse, if you have an inner experience or interoceptive experience as very confusing, then many times these emotion words — that how often are we throwing around emotion words, right? As OTs, like, “When you feel anxious, take deep breaths,” like, but how many of our clients truly and concretely understand what those emotion words mean that we’re throwing around? And I think the same is true for speech therapists. So, just little things like that. And, of course, interoception impacts so much of communication. And I even think of like some of my clients, and we’re working hard on how to help them to communicate to even like medical providers, where discomfort could be coming from in their body, and helping to make that an accessible process. Because I think a lot of my clients that are non-speaking are suffering in silence. They have pain coming from their body somewhere, and they’re expressing it in the best way they know how, but we’re not good at reading that. So, how can we help them to become clear on their inner experience and some form of a method to be able to pinpoint where that’s coming from so that they can get targeted medical care?
Meg:
That’s great. That’s also important. I want to ask you to walk us through a case study for those of us who are still kind of trying to picture what it might be like to have an interoception lens in our work. Can you walk us through a case study?
Kelly:
Sure. Well, I just assessed a client. So, I’m gonna use him. He is a 15-year-old and has really significant mental health challenges right now and is really dysregulated, really struggling to even participate in the school environment. He’s at home right now. And so, what we’ve done in the past, and what I’m planning on doing in his assessment was largely interceptive focus. But I should say, before I even got to the assessment, I did a lot of relationship building with him. He was someone, a 15-year-old, that has been in lots of therapy, and he didn’t want to see yet another therapist that wasn’t going to get him and they were going to misunderstand or mislabel his experience. So, there was a lot of relationship building there. And I really learned how to play Magic the Gathering pretty well. So, that’s his favorite game.
Meg:
That’s fun and great relationship building.
Kelly:
Yes. And I am horrible at the game, I realize. But anyways, yeah, then we did a lot of interoception-based assessment. And for him, because he’s 15, and he is — he does speak to communicate, I asked him a lot of questions just trying to get curious about his inner experience; what type of insight could he provide me? So, asking him like what does his body feel like when he’s excited? What does his body feel like when he’s hungry? What does his body feel like when he calls it stress? So, what does your body feel like when you’re getting stressed? Like, really trying to understand his inner experience, and came to find that he was not connecting with any of his bodily sensations. So, he was like the kid that we were talking about earlier. He was just completely surprised by his intense feelings of overwhelm and shutdown. He was not eating on a consistent basis, and his mom reported that she had to remind him to eat on a continual basis. And he would get to the point that he called it hangry, where he would get like, so beyond hungry that he had to eat right now in that moment. So, there’s a lot of signs indicating that this interoception-based work could be meaningful for him.
And so, we only are in the very beginning stages of working together. And we start, we talk about building body-emotion-action connections. So, the body piece comes from, ‘What are you noticing in your body’. So, maybe it’s a dry mouth and a dry throat. The emotion piece comes from ‘What do those sensations mean for you’. So, maybe it means you’re thirsty. And then the action piece comes from like, ‘What works for you’, what promotes comfort within your body. So, we’re going to be working towards that with this client, building body-emotion-action connections. So, we’re starting in step one body right now and helping him to connect his body sensations. Like I said earlier, we start this work with chunking it into one body part at a time. We start with outside body parts first, because they tend to be more concrete. You can observe the body part and you can notice how that body part feels. So, we have worked through noticing different ways his hands can feel, his feet can feel, his mouth can feel, and we’re on eyes right now and noticing the different ways his eyes can feel. And so, it’s really a slow build to being able to check in and notice how your entire body is feeling. So, where we’ll go next and what you’ve done in the past is after he is really more connected with his body, noticing different sensations within his body, then we’ll help him use those sensations as clues to his emotions.
So, when you notice this feeling in your body, like a growling stomach, and maybe like a heavy head, what does that mean for you? Maybe that means you’re hungry. And so, we do that in an individual basis, again, because we’re also unique. And then we’ll finally tack on the action piece. And I think that tends to be my favorite part because we explore like so many different feel-good actions and activities, and we have these little feelgood menus, and they’re all under a different category. So, we have like a deep pressure menu, we have a movement menu, but then we also have like a kindness menu, a repetition menu; so many different themes. And we go — each menu has a different set of feel-good activities to try. And we invite our clients to try whatever they want from the menu and then they get to identify like, does that make my body feel good? ‘Yes’ or ‘No’.
And so, everything that they mark ‘Yes’ to then we put it together into like a master feel-good menu for them. And we do that at the end of the interoception work because many times in the beginning, my clients aren’t ready to identify what makes my body feel comfortable and uncomfortable. But we empower them through that work to be able to really connect to more things that promote those feel-good sensations in their body. So, that’s just kind of an example in a nutshell. We use the Interoception Curriculum which provides a framework for doing this but it can be adapted for so many different clients and I hear common questions like, “What age group can you do this work with?” And I’ve been training infant mental health specialists. So, we’re starting as early as possible, and really empowering caregivers to build this interoceptive piece. And we’re doing it all the way up through; I have a couple of adult clients that are in their 60s right now. And we also the other big question we hear is, “Can you do this with non-speaking clients?” And the answer is, what do you think?
Meg:
Yes!
Kelly:
Thank you. Absolutely. So, we adapt this to meet each client and their learning style, and are having some really awesome outcomes in both real life and also in our research.
Meg:
That’s wonderful. And I know you have so many resources, books, and courses that we’ll talk about in a minute for people who just listened to that and are hungry for more, which I think might be the impact. I love how you talked about first building the relationship, then working on the body, and then the emotion, and then the reaction. Because I think it’s pretty typical in therapy practice to start with reaction. To just jump right in with the toolbox, hand it over, there you go, and skip everything else that you just talked about, which is so important and so foundational.
Kelly:
Absolutely. I actually have a friend, Chloe Rothschild. She’s an autistic adult, and we do a lot of speaking together. And she talks about how in high school she was the Encyclopedia of Coping Strategies; like, she could name 100 coping strategies but the amount that she could put into practice in the moment was zero. And it’s because she was missing that interoception piece. Like, those signals provide us clues that like, “Oh, hey, now might be the time to seek out one of those coping strategies.”
Meg:
Kelly, of everything we’ve talked about today, if folks have one big takeaway from our conversation, what do you hope that would be?
Kelly:
The interoception is an everyone thing. It’s important for all of our health or well-being, and also, hopefully, it just inspires people to get even more curious. Curious about our clients and empowering them to be more curious about themselves.
Meg:
Tell us what resources you have available, what you’re working on now, and where we can find you online.
Kelly:
Well, I have lots of free resources. So, I always start there on my website, kelly-mahler.com. We have a whole section of free resources. And if you’re interested in taking a deeper dive, I would say our most popular resource is the Interoception Curriculum. And what are we working on? Lots of really exciting things. We’re doing lots of research to put evidence behind the Interoception Curriculum, and to make sure that it’s the best that it can be. And we’re also working on a new book that is going to be 50 interoception games and activities. So, we’re really excited about that.
Meg:
That is so exciting. And I will link to your website and your resources in the show notes. Thank you so much, Kelly, for this conversation and for the work you do for our field and our clients.
Kelly:
Thanks, Meg. It’s an honor to be here.
[Ending music]
Thanks for listening to the Two Sides of the Spectrum podcast. Visit learnplaythrive.com/podcast for show notes, a transcript of the episode, and more. And if you learned something today, please share the episode with a friend or post it on your social media pages. Join me next time, where we will keep diving deep into autism.
