Interoception and ARFID, let's understand it better with Kelly Mahler

Laetitia: Welcome to The Neurodivergent Pulse, where we explore the often misunderstood world of neurodivergence with experts, parents, teachers, and therapists. Grounded in lived experience, each bite-sized episode gives you something practical to try. I am your host, Laetitia Andrac, AI expert, neurodivergent mum, and founder of Understanding Zoe. This podcast is recorded on Dharawal country. I acknowledge that sovereignty was never ceded. It always was and always will be Aboriginal land.

Laetitia: Hello, Kelly. Thank you so much for joining us on The Neurodivergent Pulse podcast.

Kelly: Oh, thank you so much for having me. It's really an honour. I can't wait for this conversation.

Laetitia: We were sharing offline, before we recorded this, how your work around interoception has been really helping us in our own family, and with everything that I've done around advocating for my own daughter's needs. So, thank you so much for being here and sharing your work with more of our listeners and a bigger audience. So, before we kick off this podcast, I would love for you to introduce yourself, mention where you're joining us from, and talk a bit about how you ended up developing this expertise in that field.

Kelly: Yeah. Um, well, I'm Kelly Mahler, and I'm an occupational therapist by trade. I, um, live in the United States, and a little fun fact about me, I live in a town called Hershey, um, Pennsylvania. It's where the famous chocolate was born. So, we're very passionate about our Hershey's chocolate, you know, that's now very famous around the world. Um, so even our little street lights are in the shape of Hershey kisses. So, like, we really love our chocolate. We're very proud. Um, I've been practising as an occupational therapist for twenty three years, which is like really hard to believe. Um, I feel so lucky that, um, I picked this profession, because I wake up every day, like, or I would say, let's say most days, really, really excited for my job. Um, I get to work with some of the most amazing humans in the entire world. So, um, yeah, I have always been, as an occupational therapist, very interested in supporting areas like sensory processing and, uh, mental health, um, emotion regulation, like those kinds of things. Like, that's kind of my niche area. And, um, like, for so long I was supporting those areas. And I mean, my clients were telling me they felt like they were making, like, you know, having positive outcomes, but there always seemed to be something missing. But, I mean, I honestly didn't know, um, for a long time, it took me ten years into my career to read about something called interoception.

Kelly: And, um, interoception, in case this is new for any of your listeners, um, it's a very sciency word, but hopefully it doesn't scare you away, because, um, a lot of people, like, when they hear what interoception is, they're like, "Oh, this makes so much sense." You know, it's something we might have thought about but didn't have the name for. So, here's what it is. It is, um, a sense within all of our bodies. So, it's the newest sense that's been identified by scientists. And, um, what they have found is, like, we have these receptors for interoception all over our body, and these receptors are pulling in information about how our body is feeling, or what is the condition of our body. So, like, how is our heart feeling? Is it racing? Is it beating slowly? Is it sore? How's our stomach feeling? Is it, you know, full? Is it empty? Is it nauseous? Is it, like, gassy? There's just so many inner sensations that people have, and we all have very different inner sensations, I'll have to say that. Um, but what, um, science has found is, like, that being able to notice and really understand these sensations is what helps us know what emotion we're experiencing. Like, am I anxious? Like, that comes from my body. My unique pattern of body signals lets me know, like, when I'm anxious, like, I have a tight feeling, and then my chest and my head feels like, it's really hard to explain, like it feels so heavy, like I can't work it through, like this thick mud. Um, and that's how I come to know I'm anxious. But interoception helps us also know things like when we're hungry or thirsty, or, um, when we're in pain. Um, so, it's really, really important for us to be able to be noticing these body signals and understanding them, because they provide us with clues to these emotions, or, ultimately, even more importantly, like, what our body needs. What does our body need for health? What does our body need for regulation?

Laetitia: I love it, and this is, it was one of, uh, you know, the key points that I wanted to ask you around the definition of interoception, because I think it's something that lots of people come to learn about when they start their journey, either discovering their own neurodivergence or supporting someone who is neurodivergent. And why is that, why is understanding interoception even more important for neurodivergent folks?

Kelly: Yeah. I think what's really exciting in the interoception field right now is there is a lot of science happening, like tons and tons of research. But this is what I find more exciting. There's so many more, like, reports, I guess you could say, or stories from neurodivergent people sharing with us their interoceptive experiences. And, um, I think, maybe, do you want me to talk a little bit about what they're reporting? Okay, that's great. Um, okay, so there's a couple of things I want to share, like, so, first of all, many neurodivergent people tell us that they have what would be maybe considered an interoception difference, meaning, like, they might have, um, a difference in how aware they are of their body signals, and this could be present maybe from birth, or something else I'm going to talk about in a little bit. It's also, interoception is highly, um, changed or affected by many of our lived experiences, so we'll get there. So, let's start with what neurodivergent people are telling us about interoception, is that they can have, um, what we call, like, a muted interoceptive experience, meaning, like, that sometimes certain body signals for them are not strong enough for them to recognise. So, maybe they're not picking up signals that are telling them when their body is hungry, or when they're getting overwhelmed. Um, but more commonly, I would say, too, for the muted experience, people tell us, "I do notice my body signals, but only when they get to a really big place." So, they only notice that they're getting hungry when they are hangry, and it's like an emergency, must eat situation, right?

Laetitia: Which is the case in our family. It's like, Zoe and I were like, I need to eat now. Like, what's happening?

Kelly: Yes. Exactly. It's just, all of a sudden, it's like, oh my gosh. Like, it just, these signals reach our level of awareness. Um, yeah. And, and that's common, like, I also hear that a lot, um, from parents, like, with toileting, oh, my kid, all of a sudden they're like, oh my gosh, I have to pee or poop, and they're running for the nearest, you know, bathroom, hopefully making it on time. Um, or, like, sometimes for people, like, that muted experience, they might not notice that they're getting overwhelmed until they're in a meltdown. Um, so those signals are kind of muted. They're not recognising the subtle little signals that are telling them, like, something's brewing in your body. Um, and it's just like this big surprise. Um, and then, on the other hand, there's a lot of people that tell us that they have an intense interoceptive experience, meaning, like, they feel, um, they feel sensations in very intense ways, many times, like, one or two signals. Like, for example, I always tell this example because I think it illustrates this. Um, I had a client a few years ago that, every time he ate a meal, he could feel his food moving through his digestive tract. Now, that's a very intense inner experience. It was very hard for him to pay attention to, you know, maths class after lunch at school, because he was having this intense inner experience. Or, for some other people, it is more, um, a lot of like inner chaos they'll describe, like they just have so many signals all happening at once, it's really hard to make sense of it all and what's happening. So, there's lots of people telling us about their interoception experiences. We have this range of awareness. I would say, also, very common, people tell us they have some signals that are muted and some that are intense, and this profile changes every day. So, some days you might be more aware of your body, some days you might be less aware of your body. That's very, very common. Um, I just think it's important for us to be aware of, because it sheds light on something I know we're going to talk about later, but, like, it helps us understand the deeper whys behind some of the quote unquote behaviours that we might see. Um, and so I think it's really important to talk about what, you know, neurodivergent people are telling us. And I do think, like, we don't know the research yet, but I do think it stands to reason that some neurodivergent people are born into this world with these interoception differences, just like we know they might have differences in auditory processing from birth. But also, what we're learning from the neurodivergent community is that a lot of their lived experiences are affecting, um, their interoception growth, and how it develops over time, because a lot of what they face, um, on a daily basis, many times, um, can be very invalidating to their inner experience. Like, they might be telling us something about their body, and many times this invalidation is coming from very loving reasons, right? Like, and I'm guilty of this as a mum, let's just give an example, if that's okay. Like, okay, so, like, when my kids were little and they would fall and bump their knee, and they'd be crying, and I would come in from a very loving intention and say, "Oh, you're fine. It's just a little bump. Just brush it off. Get up, let's keep going." Instead of saying, "Oh my gosh, I see you're crying." Like, they were telling me something about their body, right? So, saying something like, "I see you're crying. Let's do something together to help your body feel better." But I was, in the first scenario, I was invalidating them. I was telling them, "Oh, what you're feeling isn't important. What you're feeling can't really be that true. Just get up, let's keep going." Um, but neurodivergent people, they're telling us this, you know, all the time. "Oh, it can't possibly be that loud in here." Um, or, "You can't possibly need this long of a break, or need this long to transition." You know, it's just so many things that show up. Um, I think very unintentionally, many times. So, a lot of times they begin to, they tell us they begin to doubt their body, cuz if everybody else is telling you you can't possibly be feeling that, you start to doubt what your body is telling you. Like, maybe my body's wrong. Maybe these signals that are telling me what I thought they were telling me aren't really, you know, reliable or trustworthy.

Laetitia: Yes. And those elements are so important to mention, because I think we're all, you know, whether or not you're neurodivergent, we all recall a moment where someone negated our inner feeling, and this is such an important point. And being neurodivergent, I know I remember so many times where I would feel the sound being too loud, or the light being too strong, and just people being like, "That's fine." And it took me the stage of life when I hit burnout, um, a few years ago, eleven years ago, when I was thirty, to really realise that actually this is costing me a lot of energy, and then really shifting the parenting now, and trying to raise my children in a way that is really honouring their emotions and their inner feeling. Yet I'm guilty sometimes of doing this too, being like, honestly it's not, and so that I, oops, sorry, I just, and so, I just want everyone who's listening to this to not beat themselves up. It's just, it's what we do, but being mindful about it and aware about it, so then we can repair afterwards, of just acknowledging that we've done this. And, really, really beautiful, thank you for sharing this. And all of this research is really exciting, and centred on lived experience, and neurodivergent folks, is really powerful.

Kelly: It really is. Yeah. Um, can I say something about what you just said? I think that even, like, um, I too would want to share in the vulnerability of, like, it's still creeping out in my life too, with, like, my own, you know, with my clients, with my kids, and, like, um, and I think that when it creeps up and we catch ourselves, I think apologising, and, um, just saying, oh, I'm so sorry, let me, you know, respond to that in a different way, like, I just feel like the apologising is also extremely validating. It just shows we're trying. Um, so I don't think we have to get it right all the time completely, and we won't, we won't, because we also have our own journey through that, and so that's really something to acknowledge, and, yeah, the repair, and the saying we're sorry, is really powerful.

Laetitia: So, there is something that I was, um, interested in covering during this podcast, which is really the link between interoception and feeding differences, because that's something you mentioned quickly, around, you know, some having muted experiences and some having heightened experiences. It's really, um, interesting to then, feeding differences. So, would you like to explain a bit more, um, and give some example about how sometimes interoception may impact feeding, because feeding experiences, because I know it's something that is asked a lot, um, within the community. So, I would love for you to share your expertise in that.

Kelly: Yeah, sure. I would love to. Um, I guess, like, let's just start from a sciency perspective, like, you know, super quick, like, interoception is found to underly so many different aspects of feeding and eating for every human being. And, you know, a lot of times in the research, they're talking about noticing when we're hungry and full, but to me it goes way beyond that. And in conversations with my clients, it's also, you know, noticing when you're, um, when you're thirsty. It's also noticing when you're feeling unsafe in your body, like in your nervous system. It's noticing when you feel disgust or sensory overwhelm, or, I mean, there's just so many things involved in the feeding and eating process. Pain, I think, is a big one for a lot of people with feeding differences. And so, um, interoception is very, um, complicated and very interwoven with feeding and eating, um, from so many different aspects. And, um, you know, I think it's really interesting, we did a survey, um, this year, and we asked people with feeding differences, specifically ARFID, but I really feel like the survey applied to, you know, the broader scope, um, beyond just ARFID, but we asked people with lived experience to answer some questions, and ninety three percent of them said that interoception is a big factor in their feeding and eating, um, participation. And so, I do think it's something we really need to be paying attention to, and getting really curious about how someone's body is feeling, um, during, you know, various aspects of eating. That's really key, because when we can figure out, you know, um, potentially, let's just say there's a source of distress, when we can get really curious about that, and what are they noticing in their body, we can, um, try to also help figure out what specifically is causing that feeling in their body. It allows us, it gives us a place where we can start to modify the feeding and eating process, so that it becomes a better match for a person's body. Um, so, for example, like, you know, if, um, a kid is just growing highly distressed during meal time, and we use a lot of curiosity, and we come to find out, I don't know, maybe it's just that they don't want their food to be touching, we need to have separate containers for all of their food. But we, that requires us to have a lot of curiosity, um, to figure that out, to make that modification, so that we're honouring what their body's telling them. It comes back to that validation piece again. When we're curious, even if you can't figure it out right away, it's okay. To me, I think the fact that we're showing them, "I see that something about this scenario is really bothering you. Your body is telling us something, so let's try hard to figure it out," even when we get it wrong, I just feel like that's so much better than some of our older feeding approaches, where we don't even take any curiosity, really, or very little curiosity, to figure out why feeding is so hard. You know, we don't take the time to, we don't ask, like, what the body is saying, we just kind of steamroll over that part, and we're like, "Touch your food, lick your food," and it's just, there's no curiosity to get to the root cause or the why behind what's going on.

Laetitia: And thank you for saying that, because here you touch the surface, which is very core to everything in our values at Understanding Zoe, which is an affirming approach. So, here you really nailed everything. It's not about pushing a child to taste their food if it's not safe for them to do so, and embracing a curiosity lens will help understand what's happening within their body, so that we can discover where it's happening. And this is where actually we can shift to behaviour, which is something you mentioned early on, which is a question that I had for you, which is, a lot of people focus on behaviour, they're like, "Oh, so they are, you know, a picky eater," and I'm using air quotes here for those of you who are not seeing the video, but it's like, oh, the picky eater, when actually, no, it's what you see, and maybe how you judge the situation, but way more is happening. And so, what do you have to say in terms of those who are just staying stuck at the behaviour, and how can we embrace this curiosity, and go beyond the behaviour and go inward, how can we invite everyone to start doing that?

Kelly: Yeah. I, um, you know, it's interesting you're bringing up the picky eating example, because in that survey I was mentioning, almost every respondent also said we need to stop using that language, because it's really invalidating to what's actually happening. Um, that, like you said, that's describing a surface behaviour, and we're giving such judgment to that surface behaviour, instead of trying and asking, why is this happening? Why are we seeing what we see? And, I think that a behaviour-based approach, um, is maybe, like, I've been thinking so much about this lately. So, like, how did we even get ourselves to this place where we see things as quote unquote challenging behaviours and we stop getting curious? Like, I think that maybe part of it is that, um, we like to have answers. So, when I say, "Oh, they're just picky eating," that, I'm giving an answer to what I see. Like, I already know why you're doing this. You're just doing this to be difficult, essentially. You're doing this to, you know, be oppositional, or whatever it is. But, um, trying to figure out the deeper why, like, why is this actually happening, that requires a lot of vulnerability, because we don't have the answer. Um, and it takes us, sometimes it's easier to get to the answer, and sometimes that quest is really, really hard, and it takes a lot of trial and error and trying different things until you find the things that are helpful, um, for, you know, the child or even the adult. Um, so, I think whenever I see, I think what we could maybe start by doing is, whenever you see a behaviour happening on the outside, really challenge yourself to think about, what could this be telling me about their insides? How could their body be feeling? You know, what is happening interoceptively for them? Um, if you want to be super sciency. Um, and I think that kind of sets us down a different path.

Laetitia: I love this. And I'm going to ask you a question which is, you know, not really in the prepared ones that I've sent you, but it's something that's coming up, is, how can we start doing this? So, if any people who are listening to this are like, "Oh my gosh, I am guilty of naming a behaviour rather than being curious," again, be very gentle with yourself. It's just how society, a neuronormative approach, and just taking shortcuts, and, you know, naming behaviour and putting people in boxes, so, that's all good. We forgive you, forgive yourself. It's like, now let's shift and move into the curiosity around interoception. But how can one start doing that? What are your kind of ideas of ways for people to really start shifting their mindset, from witnessing and then being curious, rather than witnessing and naming and judging and having this kind of standardised approach?

Kelly: Yeah. Yeah. Yeah. I think that's a really great question. Um, and I do also, like, for your listeners, I have, um, you know, I've been practising for twenty three years, and early on in my career, I was in very compliance-based, behaviour-based programs, using all of these things that I am now advocating, you know, that we're shifting away from. So, there is really, like, I think there is no shame. I just think we all need to keep taking steps forward. Um, so, I think what we can do best, um, whenever possible, is ask. I think we need to ask the child, if we're talking about kids, you know, like, if we can, and try our best to get as much insight as possible, like, you know, and I know that this might be different depending on the age, or the communication style, or the cognitive level of a person, but I presume competence, and I ask, like, I'll be like, you know, "Oh, I see you're crying right now," or, "I see you're pushing this plate away, tell me more about that," or, "What's going on in your body?" You know, they might not even be able to tell us at first, and sometimes, like, some of my clients, they look at me at first like, "This person's asking me about myself," it's kind of a jarring experience once in a while. And many times they might not even have the insight yet to be able to tell you and articulate with great reflection, but I think that curiosity, and that questioning, um, and it's going to, each question is going to be so different for each child, so I think that your listeners are going to know your child, figure out how you can, you know, phrase questions to get as much insight as you can about what's going on inside. Like, "Why are you pushing this plate away? Help me understand. Show me what you don't like." You know, just trying to get as much insight as we possibly can. Um, and when your child tells you something, believe them. Even if it's something that, you know, might be different than what you might expect. Um, I think that validation and belief is so deeply important. So many, um, neurodivergent people, especially when we talk about this feeding space, um, they're not believed, uh, you know, there's a lot of injustice around that, and, um, so I think people just even showing that, "I'm going to be curious and believe you," is really, really important. So, that's my best advice, is to start to ask, and if your child is not able to, you know, share insights, I still would continue asking, um, not in, like, seven minute monologue ways, just, like, simple little phrases, like, you know, "Oh, I see, you know, whatever they're, I see you getting up from the chair. Maybe we need to walk a little. Do you want to walk a little bit before we try eating again?" Like, just talk about what you see their body doing. And keep asking those questions, not in an annoying way, just in a lightly curious way. Um, what you can also do is, if you have a hunch, because I feel like so many parents have hunches about their kids, especially when we start talking about interoception, they're like, "Oh, I wonder if this is what's happening for my child." Start putting some adaptations in place. So, the example I was talking about before, where, um, you know, it was like the food touching each other, you know, if that's kind of like your hunch, talk to your child, like, "Let's today, let's try putting your food in different bowls and seeing what you think about that, and trying it." It might be a disaster. Maybe they hit the bowls all on the floor, but, you know, then you can be like, "Oh, I'm so sorry. I thought maybe that would help. We can try something different tomorrow, or whatever it is." So, ask the questions, and then use your curiosity to start to modify feeding a little bit based on your hunches of what could be happening internally, and see what happens.

Laetitia: I love that, and this is definitely applicable to anyone. So, teachers, and therapists, and support workers, like, really, this curiosity is really a big mindset shift, I think, and we need that more in the community. We need more people to be curious about our own experience rather than naming it. I feel you want to add something to what I just said.

Kelly: I just, I just am passionately agreeing. I just struggle to read faces. So, sorry. Very, very autistic of me.

Laetitia: Um, but yeah, that's really beautiful, and something that I love to always ask on the podcast is a fire question to close the interview. And so, what is something that you see yourself saying more often than not, to be curious? What is your curiosity question?

Kelly: Oh, goodness. Gosh, that's such a good question. Um, I usually am saying, like, you know, "I see this happening in your body, tell me more," or, "Show me what your body needs." Um, so those are probably some of the bigger phrases that I'll use, but I do adjust, um, and try to, like, you know, I'm constantly, my husband calls me the interviewer, um, because I am such a curious person. I can't stop myself. I want to understand someone's inner experience, whether that's in my personal life, with friends, or with my clients. So, yeah, um, definitely, like, "Show me what your body needs," or, "I see something happening, what's going on for you."

Laetitia: Yes, I love that. Thank you for sharing those questions with us. And, as you were talking, I was thinking of something, and maybe I need to bring you again on the podcast to talk about this, but about PDA, and how do we ask questions without adding demand, and, you know, impacting the window of tolerance, because straight away, as you were sharing those questions, I was thinking about our own family, and how sometimes when I ask a question it's received as an extra demand. So, how do you feel, so, quickly now, if I need to bring you again to speak about PDA and being curious, and interoception?

Kelly: Um, I could say something very quickly about that. Like, two things really fast. Um, you can use "I wonder" statements, which I love. Like, just, "I wonder what your body is telling you right now." So, it's not a direct question, you know, we're being curious without expectation of a response. You can just kind of drop it very casually and leave. Um, but it kind of, you know, sets that curiosity stage. And then the other thing you can do, if, um, your child can tolerate it, is start modelling about your own interoceptive experience, um, in very authentic ways, because we don't want them to be sniffing out the fact that you're doing this for fake reasons. Like, this has to be genuine. Like, you're noticing a sensation, say it out loud. Like, "Gosh, my head is pounding right now and it's so loud in here. You know, I have to put on my AirPods." So, like, talk about how your body is feeling and how you're taking care of it, out loud. I think that's really, really helpful, that modelling.

Laetitia: I love that you said that, because I do that a lot, and it's actually our, uh, occupational therapist who noticed that, uh, that I was kind of role modelling all the time, like, "Oh my goodness, I am feeling right now, buzzing with energy," or, "I am feeling that there is too much light in my eye," you know, starting to not feel good. Like, I just talk a lot, and I think this is something that I actually learned through my own, you know, traumatic experience of burnout. I was like, from now on, I need to talk myself through my feelings to honour them. So, it's so interesting that you mentioned that, because actually, this is what's working a lot in our family. It's the role modelling of my own interoception experience. Thank you. It was such a delight to have you on the podcast. You're full of wisdom. I just love everything you do. So, for anyone who is, uh, listening to this, and they want to hear more about interoception, about your work, about everything that you put out there, how can they connect with you, and what's the best place to reach out?

Kelly: Yeah, probably the best place is on my website. So, it's kelly-mahler.com. Um, and we have links at the bottom of the homepage to all of our socials, if you're more of a social media person. But on the website, you'll also see we have a lot of freebies. Um, free videos, free blogs, free printables. Like, we are very passionate about making this work as accessible as possible. And then, of course, we do have paid resources on there. But if you want to learn more about interoception, I'd start with all the free stuff first.

Laetitia: Yes. And you also have a book.

Kelly: Uh, yes. I have, um, my latest book, I wrote with my fifteen year old daughter. So, that's a very big source of, um, pride for us. Um, yeah, it's all about, um, it's a very interactive book, and, um, it's designed to guide kids and adults that are reading together to notice their body signals and talk about them together.

Laetitia: Highly recommend it. Thank you so much for coming, Kelly, on the podcast today.

Kelly: Thanks for having me.

Laetitia: Welcome to a new pulse check with Zoe on The Neurodivergent Pulse podcast. So, Zoe, how do you know when you're hungry or when you're full?

Zoe: Uh, when I'm hungry, I have this feeling straight away that I need food, or else I like, starve to death, basically. And when I'm full, my belly starts to ache, and I feel like I've eaten too much.

Laetitia: And what's happening with thirst, then?

Zoe: Um, thirst is basically the same thing, but I just need it even more quickly.

Laetitia: Yes.

Zoe: Because then my mouth gets dry.

Laetitia: So, it's in the last minutes that you feel you need it, is it?

Zoe: Yeah.

Laetitia: Yes. Okay. And what helps you to connect better to your body?

Zoe: Um, when I don't eat fast food.

Laetitia: Yes.

Zoe: Um, I would definitely just keep eating, and maybe eat too much, that I feel a little bit sick afterwards.

Laetitia: Okay. Thank you, Zoe, for sharing your experience with feeling inside your body, interoception, about food and thirst, and everything. We're very grateful for your experience being shared here. Thank you.

Zoe: Bye.

Laetitia: Bye. That's a wrap for The Neurodivergent Pulse. If this helped, follow the show and leave us a quick review on your favourite platform. You can even share this episode with someone who needs it. You can learn more about our platform at understandingzoe.com.