Interoception and Non-Speaking Autism: What Parents Need to Know | Daria Kotenko, Spelling the Tea on Autism

If you're parenting a non-speaking autistic child and you've never heard the word interoception before, this episode of the Autism Changemakers Podcast is where to start. 

I sat down with Daria Kotenko, mom to nine-year-old open speller Raphael and creator of Spelling the Tea on Autism, to talk about something that doesn't get nearly enough attention in our world: the inner body experience of non-speakers, and why parent regulation is not optional if you want to support it. 

Interoception is the ability to feel what's happening inside your own body. Hunger. Thirst. Digestion. Tension. It is something many non-speaking autistic children struggle with deeply, and it affects everything from motor planning to sensory regulation to their ability to spell. What Daria and I explored together is how much of this work starts with us as parents, not with our children. 

In this episode we talk about: 

• What interoception is and why it is one of the most important things parents of non-speaking autistic children need to understand right now.
• Why your child's ability to connect to their body and develop better motor planning and regulation is directly tied to how regulated you are as their parent.
• Why you cannot fake calm around a non-speaking child, because they are perceptive enough to feel your state of stress or steadiness whether you say a word about it or not.
• What it actually means to presume competence when it comes to the body, and why believing this work is possible is where it all begins.
• What Daria and Raphael have built together as true partners in sharing their story, and what open spellers are telling us about what they need from the people around them.

You cannot pour from an empty nervous system. And your child is already feeling everything you carry.
 
Connect with Daria and Raphael at spellingtheteaonautism.com, on Instagram @spelling_the_tea_on_autism, or on Substack at spellingthetea.substack.com.

If this resonated, come find me, Sara Intonato, on Instagram @sara.intonato or learn more about Autism Changemakers at autismchangemakers.com.
 

Transcript

SPEAKER_00 0:02

Hello, everybody. Welcome back to the Autism Changemakers podcast. I am your host, Sarah Antonato, and I'm so honored to be here with my friend and colleague and fellow parent, Daria Kotenko. We are here to bring you an unscripted, unedited conversation that will actually help you in your life today, parenting a non-speaker. Daria is the mom of Raphael. How old is he now, Daria? He's nine years old. He's nine years old, and he's been an open speller for a little while. For almost a year. More than a year at this point. More than a year. And you might know Rafael's voice from Daria's amazing Instagram page called Spelling the T on Autism. And she often shares posts that Rafael contributes to directly that are incredibly insightful and eye-opening and important in the way of all of us having a better understanding how to support our children, no matter how old they are, as non-speakers. So, Daria, please add anything that you would like to this introduction.

SPEAKER_01 1:09

Well, first of all, thank you so much for having me on the old spotcast. I'm incredibly excited to share all the things. And at that time, I started talking a lot about like taking care of yourself and you know looking beyond just being a mom of an autistic child and all these things. And then, as life has it, um, you know, universe laughs at you, and then I'm presented with this spelled communication thing. And then you're like, hold on, what? What just happened? And then my whole world blew up. And, you know, we started discovering a lot of things, obviously started jumping in uh in and asking Raphael all these different questions, trying to understand things. And so when I was like, okay, I want to share on this now, but I want to share it from the place of um doing it together with you, is talking with Raphael, right? Because I feel like for the longest time I shared about him. Let's face it, without really his consent, because he was not able to give one. Um and so the journey of spelling the T of aut on autism started with okay, we're partners here. Yes, he's still young. Yes, he's, you know, he's not gonna have his like on Instagram or whatnot. And obviously spelling requires a partner. So there is certain limitations, but I see you as partner in this journey. I see you as full voice, not just um, yes, contributor, but we are doing this together. And so I see myself now as a representative of both of us in some sense, while you know he's still growing his you know, autonomy and independence uh gain strength. So I am excited to be the not the voice for him, but as a representative hand really introduced his voice in this conversation.

SPEAKER_00 3:33

One thing that I think I admire about Raphael and everything that he shares is how much he talks about the work he's had to put in to get control of his body and his motor planning and his impulsivity and all the things that we hear about from the journey of a non-speaker, but he really shares about them directly. And I was wondering if you could start off by talking about interoception, because I think many parents don't yet know what this is, and it's something that we need to know about because it contributes to a lot of what non-speakers experience. So let's start there.

SPEAKER_01 4:15

Yeah, so um it let's start from the beginning. So a lot of um nonspeakers and probably all of them experience sensory differences compared to a typical person, right? And we are always taught about, you know, your hearing, your sight, your um your vision, you know, uh tactile, and put all of these like five senses in a traditional sense. What we often forget, and unfortunately this includes um people who are professionals in the field, is that there's three more that uh we need to think about, and then that being interoception, proprioception, and the vestibular, right? So vestibular is your um sense of where the gravity is, your body position in relation to gravity. Your proprioception is your feedback from muscles, right? Where your body is in position in relation to like is my arm extended, right? All of these things. And our interception is internal feedback from organs, from am I thirsty, am I hungry, am I where's my breathing is at, where is my heart rate is at, like all of those things. And what we really need to think about is it's not just about do I feel those things? Because you could argue, I mean, it's nice to feel those things, but it's not just consciously understanding that. It's also that if you don't feel something, then your nervous system does not have reliable information about that. And if your nervous system does not have reliable information about that, then your autonomic nervous system, which is supposed to regulate all those things, am I, you know, where am I allocating more resources right now? Am I addressed? And I'm regular, you know, directing more resources to like digestion, recovery, all of that. Am I in fight or flight? And am I um directing more resources towards that? Like that whole regulation part of different processes in the body is not then happening to the fullest extent if we don't have reliable information about interoception, right? Like for the longest time, Raphael didn't have like ability to feel his breathing, let alone control it, right? And again, it's it's it's it's almost laughable looking back that people talk what work on speech and I cannot control my breath. I cannot feel my mouth. What are you talking about? Right?

SPEAKER_00 6:57

So it's really mind-blowing to me. It's interesting too because last year I had a brilliant coach, Lisa Carpenter, come into my group, Autism Changemakers, for the parents. And she presented a brilliant workshop that still lives in the library there around the HALT framework, checking in with yourself. Are you hungry, angry, or anxious, lonely, or tired? And it was phenomenal to watch so many parents who, you know, are so busy and doing their best every day with so many things they have going on. Feel like they were getting slapped in the face to say, oh gosh, I didn't even stop to see if I was hungry today, or when was the last time I drank a glass of water? Because something I did not know that Lisa shared is that if your body sends signals over and over again and you ignore those signals, you don't rest when you're tired, you don't when you're thirsty, your body will stop sending the signals. And this is how, on the one hand, our body is so smart. Like if you have somebody who, for example, has been in a situation where they're starving, their body will shut down their hunger reflex so that they don't feel the pain of being hungry every day anymore. And parents don't realize that they're essentially doing low-grade versions of that every day by being martyrs and getting in the habit of doing more, doing more, but not actually giving themselves what they need to thrive. So I point this out because so often the focus goes right to the child who's not. What do I need to do for them? How can I help them? Well, how can you teach them how to recognize hunger or thirst or exhaustion if you're not able to recognize it in you first?

SPEAKER_01 8:51

Yeah, yeah. No, this is such a great point. And um one thing that is really interesting about interreception is that this is also how we experience emotions. Like if you think about emotions, if I'm angry, right, my heart rates, my heart um, you know, speeds up, like my breathing speeds up, there's certain hormones that fluctuate through my body, right? That creates certain sensations, right? Every emotion you can tie to certain sensations in your body. And if your interception is wonky, then it's not that you don't experience that emotion, because I think a lot of time people jump into this, oh, he's autistic, he's not gonna feel it. Okay, that's just a little bit bonkers. Um, it's that because we don't have internal kind of anchor of those experiences, and at the very basis, again, our nervous system always wants to know am I safe, am I not safe? Survival. Very, you know, baseline is our brain's uh goal at the baseline, survival. And if I don't have that information internally, then I'm gonna seek that externally. And so from what Raphael shared a lot of the time, is that when you don't feel your insides very well and you don't have all this information, you're taking information from other people, you're taking information from around you. And if you're as a parent, you're stressed, you're, you know, let's face it, ridden with guilt, shame, regret, all these wonderful things that we just carry in the bag on our back without even recognizing, then they are just taking it all in on themselves, right? And and because interception is wonky, they're just like absorbing it all. Like it's really hard to kind of separate yourself. I mean, even as adults fully functioning, like if you see someone really in distress, really stressed, is it takes effort and practice, and I'm sure you know this, to be like, this is not mine to carry. I can help you, I don't have to take it on. It's really hard to do, it requires a lot of practice and a lot of skill to regulate yourself to the degree where that's not mine to carry. Now think about a person who does not have that even physical, you know, ability to separate those things, let alone practice and mindfulness and all of those things. It just flows right in. And so for us as a parent, I think it's really paramount to look into ourselves and recognize where we basically supplying our children with all this like negativity and things and all the things, right? And one thing that I really want to make sure that people also think about interoception is if we're talking about non-speakers, a lot of time we're talking about aproxia, right? Brain body disconnect, challenges with motor planning. Well, what is motor planning? Motor planning is your body's ability to plan action and the sensory consequences of those actions. It's not just how can I move my arm, it's how can I move my arm, and then what um signals that like I move my arm and then I'm expecting certain signals to go back, right? To be like, oh, this is exactly what happened. I'm assuming this is what's gonna happen. I mean, I'm talking as if I'm a nervous system, right? Obviously, all this happens subconsciously, but as we plan actions, we expect sensory feedback, and then we get that sensory feedback and we can further, right? So, and especially interception, where it, you know, the lungs, the hearts, like all of these internal things that are so basic to us, like they help us coordinate so many things. And so it's not again, it's not just the feeling, it's not just, you know, um regulating different systems in the body, it's also the motor planning. And I think this is a perfect example, and I I want to make sure that I don't forget because I have a quote from Raphael that I wanted to read over here that um is really on this topic. So my body is so much more in tune with my mind now that I have discovered my insights so much as possible when we feel our body fully, not just to praxia, but overall health and vitality we deserve. It is a mystery for me why we're not paying more attention to interception and how we can grow it from within without obnoxious therapies for 40 hours per week. Body scan is the gateway to the future where the non-speakers are have the autonomy and independence they deserve. Beautiful.

SPEAKER_00 14:04

I love this so much, and I can't speak for anyone else, but I can say that since Rocco was diagnosed at two years old, he's 16 now, we have invested an enormous amount of time, energy, money, resources in healing his body. We didn't know until we started taking a closer look, but he was a very unwell little boy in his body. He had everything happening from intense histamine reactions, candida overgrowth, gut issues, fat absorption issues. He dealt with tick-borne bacteria a couple of times, parasites, so many things. And to me, it seems like common sense that if your body is heavily distracted, just trying to keep you functioning in a basic way, of course, you're not going to be getting into more supportive feedback loops that allow you to discover these layers of interoception. Would you agree with that?

SPEAKER_01 15:04

Yeah. So it's really interesting in that those things are all interrelated, right? Because again, if you were something that Raphael shares, that we talk a lot about lungs as he's discovered lungs, but also after lungs, he started really working on feeling his digestion tract and feeling his stomach. And one thing that he shared is that before he fully felt his uh insides and how it works, he was he used to having discomfort all the time and it was like hurt all the time, and something I did not realize. And once he starts feeling that, his digestion has improved. So it's like, and it makes perfect sense because if your nervous system has a better understanding of what needs to be done to regulate different things, then you know, you send whatever the signals, nervous hormones, whatever is needed, right, to rebalance things. It makes perfect sense. And vice versa, like you said, it's like if you don't have reliable information in your nervous system, your nervous system does not regulate fully. So that creates a foundation. Let's well, a foundation is not sounds like a positive thing. It's created a circumstance where a lot of different things can happen, you know, bacteria, all of that. Like I think I come across the research that said that basically almost more than half of um of autistic children have the candida, I believe, or like gastro gastron yeast. It's insane. And yet we we don't look at uh you know diet at all. Like uh I mean that's another rabbit hole that we can go down to, but thinking about interoception specifically, it's like it is a little bit of a loop in that in order to really focus and work on connecting with your body, we need to fundamentally be at peace. Fundamentally, we need to have space to rest and digest, right? We need to be in that state to connect to ourselves. And if we are in pain, if we're in stress, and let's face it, if we're put in the environment with demands for 40 hours per week, does that create really a circumstance where we can have you know peace and rest and connect to ourselves? Yeah, not likely, yeah.

SPEAKER_00 17:40

You know, as you're speaking about this, it's reminding me how my background is in yoga and meditation. I've been a yoga teacher for over 20 plus years, and the way I often describe Rocco to people, especially when he was in his state of much poorer health, I will say. Yes. Have you ever tried to meditate? It's challenging on a regular day. Now, have you ever tried to meditate when you've had something in your physical body flaring in an acute fashion, whether it's lower back pain or neck pain? If you're in pain, you can't focus. It is consuming, it consumes every bit of your mind, every cell in your body. Have you ever tried to meditate when you've had food poisoning and been doubled over? No, you can't. Like it's too distracting. Your body can't handle it. Your mind is not available for things like that. And I look at this population of non-speakers whose bodies are so sensitive, who are dealing with so many things. Well, of course, starting to spell will be challenging if your body's in a constant state of distress.

SPEAKER_01 18:49

Yeah, yeah, yeah, yeah. It it's so like I cannot stress enough how important it is for both parents and non-speakers. Because again, we do not want this conversation to be, oh, I need to create peace for them, so I need to stress the hell out of myself. Like, no, no, no, no, no, no, no, no, no. You need to create space for peace for your non-speaker and yourself, right? Because again, they can they're gonna take on your stress. So de stressing yourself is gonna help them to distress themselves. And then from that place, okay, can we connect to our body? Okay, we're I mean, if there's you know, urgent situation that needs to be healed, obviously that needs to be addressed. But sometimes what I found that sometimes the more space I actually allow Raphael to like rest and connect to his body and like do what he needs to do rather than shove in more therapies because I think another thing that I want to say that might trigger some people. And I I will be perfectly honest, I was in that place, and I speak from a place of I was that person, I was that person. That sometimes as parents, we feel this immense sense of guilt that I've done something wrong, it is my fault on some level, it is, you know, I've done something wrong ultimately, right? That then we want to exonerate ourselves by providing more therapies. Let me do one more thing, let me do one more thing, let me do this, let me do that, and I'm putting, putting, putting what else can I do to stop feeling guilty? Yeah, and ultimately you will feel guilty as long as you allow yourself to feel guilty. Like, like we try to heal internal feeling with external things, and ultimately that doesn't work, right? And so I really invite all the parents to investigate what they're feeling because what I also found is that you feel this guilt, right? A lot of time guilt is covered by something else. I know for me it was anger for a lot at the time. I felt angry about the school, I feel angry about ABA, I felt angry about yada, yada, yada, yada. And some of those things are justified, some of our system is not are not perfect. That's also true. Like I don't want to dismiss that. But if I'm being totally honest with myself, is that it's that feeling of I should have known better, I should have done more. And so I'm angry because I want to protect myself from the guilt that I'm feeling, right? And then from that place, well, obviously, where's the guilt? There's a good regret, right? And you're sitting in this feeling of guilt and regret. And from that place, if you are in regret for long enough time and you don't resolve it. You start slipping into lack of self-trust. I'm I'm never making good decisions. Um, I, you know, I never get things right, yada, yada, yada. And from that place, again, you're working with a non-speaker who takes all of that in. And one, if they've sensed, and and let's be honest, non-speakers, like we can hide from our feelings. They see us in entirety. They sense those things from a mile away, right? And so they sense your lack of self-trust, and they start going like, can I trust you then? One, and two, can I trust myself? Because I then internalize all of this. And of course, you're gonna have really hard time, say, spelling together, because there is this underlying layer very deeply of I don't, I'm not, you don't trust yourself. I don't know if I can trust myself because I'm, you know, and a lot of time we're talking about children of younger age, so they kind of take on parents' emotions by default. That's just what children do, right? Um, and then so there is this dynamic going on. And so healing that dynamic and looking at it and sitting with it, and like, I mean, sometimes you have to like really sit in it, sometimes cry it out, sometimes chat it out, sometimes really like get it out of your system and then come to a place to forgiveness and acceptance, and then suddenly things move, right? Because I think so often we like try to do more, do more, do more, do I need to do another therapy, another this, another. Yes, sometimes yes. And again, I don't want to dismiss the fact that a lot of non-speakers have very complex health, and there is there's no shortage of things to be done. That is also true, but doing it from a place of I love myself, I love you, this is our next step, not I'm not enough, and I need to feel enough by putting another thing on you.

SPEAKER_00 24:13

It's a completely different intention behind whatever you're doing, truly. This is why we have support circles every month in Autism Changemakers, because this is not a support group where people come and they share war stories. That's not what it is. People come talking about exactly what you just said. I'm carrying around this layer of guilt. I know I need to work through it. I don't know where to start, but it's impacting my child and my whole house. And we sort through that together. This is my work as a coach and facilitator, helping pull on those threads in an environment that feels safe and supportive and not judgmental with other parents who get it, so that you can leave that meeting feeling lighter, feeling free, because you are kidding yourself. And I've heard moms say this, dads don't say this as much, moms do. I fake it around my child, and so I can regulate myself around them, even though the rest of my life is totally stressed out and I'm barely functioning. Like, that's hilarious that you think that. And I'll paint the picture for everyone listening right now to prove that if you're telling yourself that you are insignificant self-deception. For example, how many times have you been in a restaurant and you're facing the door, and someone opens the door and they can say nothing, and you can see right away that they're having a good day. They're smiling, they open the door and they hold it for the person behind them, they greet the hostess joyfully, you can tell they've got a little pep in their step, and someone can walk through that door and say nothing, and you can tell they're having a bad day. It slams behind them, they're huffing as they try to put their keys back in their jacket pocket, you know, they're in a hurry, they're kind of mumbling to themselves in a rush. You don't need someone to spell out for you how they are feeling. They can tell you that they're having a good day when clearly they're not, and you'll know that's not really true, but I guess they're trying to be polite. So if you're really telling yourself the story that you're living in a state of stress, but you can fake it till you make it, where your child is concerned, it is a lie. And you can tell them to eat all their green vegetables, you can give them zero screen time and line up all their supplements in a row. If you are operating from a state of stress, that is what they will learn from you. That is what they will think parenthood looks like, adulthood looks like. The difference is that when it's a stranger walking through the door in a restaurant, you don't take it personally if they show up in a bad mood because you don't know them, you don't know their history, they don't live with you, they have nothing to do with you. You observe it, you move on. But when it's someone who lives with you 24 hours a day and you see them in that state, even when they tell you with words they're in a good mood everything's fine. Fine is not an emotion, by the way, but people say it all the time, everything's fine. You start to ask yourself, especially if you're a child and you don't yet have that emotional maturity to separate someone else from you. Did I do something wrong? Is mom upset because of me? And it weighs heavily on them. And something I've noticed as well, and this is why parents regulating themselves is so important. I see open spellers all over the place. I know many families whose kids are open spellers of all ages, and I've noticed an interesting trend. When a parent is committed to doing their inner work, when they are doing therapy or working with a coach or supporting themselves internally, their child, who's a speller of any age, talks a lot about how they feel so much gratitude to have a voice, they love their family dynamic and having experiences together, they're so excited to learn and grow. And when I see parents who have good hearts but are still in this hamster wheel of victim mentality, I see their children spelling about hardship every chance they get. I'm so stressed, school is so hard, I don't have any friends, I worry about having to go do this thing. Their mind is spiraling about all the things that are difficult or could be going wrong. And we all have difficult circumstances. I'm not saying parenting and non-speakers are super easy all the time. But where do you think they're learning that loop of negative thoughts being a constant part of their day versus the spellers who have joy in their home and can actually co-regulate with their parents? So I will get off my soapbox now. But I'm glad that we're having this conversation because you can read all the books, you can listen to all the podcasts if you want. If you don't get really honest with yourself, and I will say support yourself with someone or a group to help you get through your blind spots because they're blind spots for a reason, you need other people to help you through them. You're going to probably stay in the patterns that you're in that are not serving yourself and your family.

SPEAKER_01 29:30

Absolutely, absolutely. And I think like I think we forget sometimes how intelligent our children are and how it's it's a combination of you know being super intelligent on one hand, but super sensitive, let's put it this way, and also taking it all in. Um and and how much, yeah, like as an adult, we have we develop this ability to have the filter, and they don't have that yet. So like you can kid yourself all you want that you're not stressed. Like sometimes I even like, no, I'm better, I'm better, and Rafael's like, rest. And all I have to say is like, yeah, I have to be honest with myself. It's not, it's it's not gone, whatever I'm working through. Right. Like he again, he senses this from the mile away. And I would argue for any of you listening that, you know, if your child is not quite open yet, that may be the very thing that is stopping them, or at least one of the things. There's many things that are going on again. But the more we let go of the pressure and pressure it on both ourselves and our children, because sometimes I find that this feeling of, oh, I have not done enough and this and that, translates into, oh, this should have happened by now. They should be open by now, they should make more progress by now. And that creates pressure on them. And let's face it, if you have tried to do anything in the world, you know, the before we go to school, you know, more pressure does not lead to more results. A lot of time more pressure means I'm more nervous. And um, this is another thing that kind of ties back perfectly to interception, is most non-speakers have a very fluctuating sensory system, right? Which means it's not just that some uh channels are providing more information in some lens, it's that it's also changing depend on how regulated you are, how well you slept, you know, what time of the day it is, what emotions you experience, all of these different things. And when we um are in the situation of stress, when we are in stress mode, our body naturally pays more attention to one, channels that are more clear, right? Like if you have some channels that are like very muffled and not providing a lot of information versus some that are very clear and loud, you're gonna pay attention to those loud channels. And two, we're provide we're paying more attention to channels that are external. So if we are trying to work on interception, and again, supporting that is like supporting your health, supporting your motor planning, like all these different things. Like I can talk about interception all day. But the moment we're in that stressful mode and we're taking on, you know, information from adults around us and you know, whatever, whatever they're going on, then interception is kind of gone because your mind is immediately paying attention to survival, eyes, right? What happens when we're in survival mode? Our muscles get stronger, we pay attention to sounds, we pay attention to uh to visuals, right? Where's the predator? We're not paying attention if we're hungry or not. How is our heart rate, right? Like we're not paying attention to any of that. And so the more we put non-speakers in a stressful situation, and I would argue if you as a parent are stressed next to them, you are putting them in a stressful situation. You can not do anything, but just by being in that state, you you kind of unfortunately doing that, right? The more we're preventing that work on them connecting to their body. And that is, I would argue, the most, most, most important work they can do because it it like it kind of creates a foundation for so many things. It creates foundation for their health and creates foundation for motor planning, which is navigating their body with success. I mean, from there, spelling independence, like all of these things are on that foundation of motor planning.

SPEAKER_00 33:54

And sometimes it's the only thing you can control when your child's having a really difficult time, you can't get them out of fight or flight faster. You can't make their cortisol drop faster. Sometimes the only thing you can do is take a deep breath yourself, let them know you're here. I'm here for you. When you're ready, I'll be right here. And there are situations where that's it. That's all you can do is be the lighthouse for them. But the lighthouse doesn't run up and down the beach being frantic in a storm, it stays steady. Yeah, right. That it wouldn't work well. I wouldn't be able to find you, it would be so frantic. But it stays steady and just shines the light over and over. And when the ship is ready, it finds it and it comes into shore. That's essentially what we're doing. And I love and I want to circle back to when you were talking about letting go of pressure, because I think this ties in really well to presuming competence, which is something that we hear about all the time in the spelling community. And I think we need to have a deeper conversation about because just because you're presuming competence does not mean it's going to happen in a certain amount of time. Just because you presume competence and you believe your child can do it doesn't mean you're going to be satisfied with the schedule that your child needs to become an open speller, for example, or heal their body in a certain way. There comes a degree of uncertainty that we have to train our own nervous systems to be okay with. That phase of I'm not seeing results yet, but I'm going to keep going. I don't have an answer for this yet, but I'm going to keep going, and I'm going to find that steadiness within myself to keep going. But you can't find that steadiness if you're feeling overloaded with pressure. And I would also argue, if you're pressuring your child to go faster, are you really presuming competence? I I I heard a phrase once that I love to repeat, and it said, things you want lightly come easily. And that's the opposite of being attached and feeling pressure and all of that.

SPEAKER_01 36:19

Yeah. Yeah. To me, I think I want to highlight that presuming competence, like it's not just thinking that your child is smart, capable, and all of those things. I think to me, when I feel like I'm really starting to get it, and I will admit I'm not there yet. There's just things that I've realized last week that I'm like, oh man, how did I not get there? But fundamentally, do we trust? Do we trust the process? Do we trust ourselves? Do we trust our children? Right? Do we have that feeling of internal trust that it's gonna be okay? We're making progress, right? Because a lot of those things that you talk about, I think, come from ultimately lack of self-trust. I want to see the evidence now that it's working because if not, I'm gonna stop because I don't trust myself, my child, you know, whatever else. And to me, like I had to trust that what Raphael shares is valid and that his feedback is enough guidance. And I can just trust that and run with it against any conventional wisdom, against any other advice, against, you know, sometimes common sense. Um, so for example, right, he shared that he's working on his interception, and a lot of times it looks like him just focusing on his body. It doesn't look like much, right? It's kind of like, well, how does it look like you meditating? It doesn't look like much, you're just sitting there. Right. Um, right? Like it does not look like much, but he asked to give him space to do that. And that meant rearranging his schedule to allow for time to do that against all the have-tos and have to do this and have to do that, and and and dropping certain things that you know, we had a lesson, swimming lessons that are funded by regional center that we had to put on pods. And it and then there is millions of thoughts in your head of like, oh, we should be, or you know, we're you know, letting down his coach or whatever, this is already paid for, and this is voice in your blah blah blah la la la, shoot, shoot, shoot, shoot, shoot. But he said, this is the focus right now. Yeah, I trust him. If I want him to trust himself, I need to trust him first. Yeah, right. So that for me really is a conversation of presuming confidence because I think it's not just about us thinking things like thinking they're smart, thinking they're capable, but embodying it and giving them agency in whatever age-appropriate way, right? And trusting that, you know, he will find out. I don't know if it's the right decision or not, but I trust him to try because I think him trying and knowing that he has my backing and do what he thinks is right for him is more important than getting it for 100% right. Now, that was my approach with his, you know, homeschooling too, because sometimes we, you know, jump from topic to topic, and homeschooling kind of gives you that uh flexibility. And and sometimes it didn't make much sense, but I'm like, if this what he wants right now, the best thing that I can do for him is to build his confidence and knowing that he can choose for himself. And sometimes he experienced consequences. He's like, Yeah, yeah, let's go back and do whatever. Right. But presuming confidence for me in that moment meant I'm gonna follow your lead and I'm gonna trust you that you know what you're doing. And yes, I'm gonna inform you as a parent. Yes, I'm gonna provide you with some like, here's my thoughts, here's things I want you to consider. You know, obviously we're here to guide our children, but fundamentally, are we giving them agency and and and trust that they know their body best? You know?

SPEAKER_00 40:40

Yeah, it's really interesting because my first experience with presuming competence did not come through the spelling world, and it was not called presuming competence, but when Rocco was really small, I was introduced to the relationship development intervention world, RDI. I actually just spoke to my RDI mentor today. Her name is Annie, and I don't know that I would have ever been able to presume competence if I hadn't had someone like her standing shoulder to shoulder with me from the time my child was two, saying, He can do it. Let's let him try, let's let him make mistakes, let's let him explore this. He's never going to grow if we swoop in and do it for him all the time. And certainly when he was small, that included basic things like learning to use the toilet and feeding himself with utensils. There was a lot of physical mess that happened, food on the floor, you name it. Like it was not an easy thing to do. But I felt like I was walking into the unknown of parenting, and I didn't know how to do it myself. I didn't know how to presume competence. It felt like such a challenge for me to make sure he was supported in ways that he really needed, and then also learned to challenge him in ways that helped his confidence and were healthy. And this is a conversation I'm constantly having. And I really look back on those years and I'm so thankful that I knew in my heart I can't do this alone. I'm not going to pretend like I have everything figured out. I need people to support me so that I can feel enough that I can steady myself enough to co-regulate with my child. Essentially, I needed mentors to co-regulate with me first. And I didn't pretend anything different. I knew that that was important because how I showed up every day as a mother was important. And if that meant me having guidance along the way, great, sign me up. And that's why autism changemakers exist as well. But in RDI, I love there's some terminology that is used called taking a student to the edge plus one. So when you look at the comfort zone that in this case a non-speaker is living with, you want to take them to the edge of that comfort zone. But if you don't cross that edge, they're just going to stay in their comfort zone. But you don't want to take a huge, giant leap out of the comfort zone because that might create so much anxiety that they freeze and then you're not going to get anywhere when they get into fight or flight. So I really learned a lot about looking for the very edge of that comfort zone and going over it just plus one, just a little bit, so that they looked to the adults in their life. Rocco looked to me to co-regulate with him. And essentially, that's what we did. We would start exploring something uncomfortable, even if it was doing a more difficult puzzle together. He would look to me saying, I don't know how to do this, what's going on? But he would feel my presence. Got your back. We're in this together. Let's have some fun and figure it out. And essentially, my job was to keep the energy really light and to focus on connection and Sharing an experience together, not make it about performance or achieving a goal on the IEP. It was just about let's learn and grow together. Guess what? I make mistakes every day too. Let's just have some fun with this. But I had to be the one to lead the way. And I later studied and learned that it's because in autistic individuals, they don't possess the same presence of growth-seeking drive that typically developing children experience. So, for example, if you put a typical child in a high chair when they're around 12 to 18 months old, and you leave a spoon in the high chair while you're preparing their food, there's a solid chance they're gonna take the spoon and throw it just to see what happens. And then the next day, they're gonna take their water cup and pour it out just to see what happens. Whereas in autistic individuals, they seek out things that are predictable. Comfort them. They're not as likely to seek out an experience to just let's see what happens with this because it feels unsafe for them. So we, for better or worse, have to be the ones to lead the way into those unknowns, even the simple ones, like eating with a new dish at dinner time and showing them this is gonna be different. I've got your back. Let's explore it together. So I share that because presuming competence in my world, and I know we've talked about this before we hit record, is not like a light switch. It's not something that turns on and then it's on forever. I'm certainly not perfect at it, even still as a parent. There are new things we are constantly learning about where I think, oh, I could do a better job allowing Rocco to explore this himself or having the expectation that he can do it, whether it's spelling out the answer to an essay question or washing all the dishes in the sink. It doesn't matter. So I would love to know how this comes alive for you in your house and for Raphael as well.

SPEAKER_01 46:00

Um I definitely agree. Presuming confidence is such a journey that we're still on. Um, an example that comes to mind just like a week ago. Um, and it's like every time you think you presume confidence, you're presented with a new opportunity of like, okay, you know, okay, we can grow to the next level. And for me, like the other day, the next level was that Raphael shared that he wanted some new clothes. And for a while, I've been like, okay, uh, what do you want? He would spell like this color and that color. And I approached for a long time like what you're comfortable in, because I know you know, tactile things, like all, you know, um, we all know that in this conversation, right? And so I let that notion for me to kind of overcome this whole idea of his clothes. And he's like, I want cool clothes. I want like he he basically was like, I want something different. I want to feel good. Yes, I want to feel comfortable, yes. But I'm like basically, I mean, he was trying to express that he would he wanted to go to the park and feel like a cool dude. And him being non-speaker is not does not, you know, change that that he's a nine-year-old and he's you know growing his maturity and he's approaching the age where he cares about those things. Oh yeah. Right. And and I like it completely was not like, you know, I was so focused on making breakfast with this, making breakfast with that, you know, whatever. And then I'm like, yeah, I'm I'm sorry. I no, like I I didn't think about it. I didn't think about it, but he wanted to just, yeah, he needs to work on, you know, being able to be more comfortable wearing those things. And again, it kind of all ties back to that interception piece because what we found is that once he felt his insides, his other sensory channels actually improved to some degree and some things became easier, interestingly enough. Um, and and that kind of speaks to your uh point of not seeking uncertainty. I think it's like if we have a lot of internal uncertainty, of course, we'll have a hard time seeking more uncertainty on top of that. If everything changes, you know, if how you see world, how you hear world, how you internal experience world changes all the time, will you hear, will you look for more uncertainty? Probably not. Um so um, yeah, yeah, that's my interception. So box. The more you provide certainty there, the more like actually he started to have easier time. Like, we tried new shoes, we tried different outfits, he tried like some pants that are like oversized and cool and with the like baggy, you know, pockets and all of that. And I'm like, dude, you do look cool now. But I never thought about that before until he asked, and he actually went with his dad, and like they had the whole spelling sessions looking for different outfit and like reimagining his style. And I'm like, yeah, I was so focused on making him feel better that I forgot that how we look also is how we feel.

SPEAKER_00 49:20

You know, it's so interesting because I think of things that are traditionally hard for people with autism, especially non-speakers, things like haircuts and going to the dentist, you know, things like that that can be really challenging for their bodies. And it's interesting because I Rocco loves haircuts now, they were hard when he was young, but as he got it more conscious of how he looked, he slowly got more comfortable and now he really enjoys it. But with a dentist, it's still more nerve-wracking for him, much like it is for most adults I know who are typically developing. But we notice now he walks into the room, he doesn't hesitate, and then the last time we were there, he spelled for us in the room I need you to help me sit in the chair. I want to sit in the chair, but his body was essentially freezing. He was standing, he walked into the chair, got in there so fast that it was kind of standing next to the chair and kind of froze, but was able to have a conversation with us. I need your help now. And he'd already had such a huge win, it used to take an hour just to walk into the room. Yes, but he's like, I'm still working on this, and this is the part that still feels scary. So can you help me get in the chair? And we were so impressed that he was able to say, I need your help. Because what happens if you don't have that mode of communication, you look at what the body is doing, and you think they don't want to sit in the chair. And you might say, Let's forget the appointment. You know, forget it. We'll just we'll do it another time. And he was able to say, This is important for me. I want my teeth to look good. I'm a teenage boy, I've got people to impress, you know. But I think I feel good about my appearance, but I need some help. And I think this is a great place to wrap up because we all still need some help. I still need help. I have mentors that I work with regularly because I'm not an island, and even if I weren't parenting a non-speaker growing and constantly becoming a higher level version of myself is important to me. It's one of my core values, but it's doubly important because I know my children are watching, and I like that they're watching and they see this as part of the human experience always evolving and always becoming a better version of yourself. And we're asking our kids to do this every day. So we better do it too. Is there anything else you want to share, Daria, to wrap it up?

SPEAKER_01 51:55

Yeah, is there anything you can't ask something that you're not yeah, it's like we can't ask our children to do something we're not willing to do ourselves. We simply cannot ask something that we are not willing to do ourselves, and so I think that's the biggest takeaway from this conversation is like if you want your child to progress, if you want your child to be in a better mental state themselves, if you want them to regulate better, your part is sometimes to regulate, and sometimes as a parent of a non-speaker, the hardest thing is to rest, to sit there and know that you have done enough, and to show an example that yes, I am enough, I have done enough, it's safe to rest and let's connect with our bodies and grow from there.

SPEAKER_00 53:00

Yeah, beautiful, and and so important, and for parents who feel like they can't rest because sometimes safety is a legitimate concern. If your child's a sensory seeker, if your child's an eloper, know that you are worthy and deserving of asking for help so that you can rest. And if you go to take a rest and it feels completely unsafe in your body and you start picking up your phone to do your online grocery order instead because you're not used to resting, just know that this is a daily conversation we have in Autism Changemakers. And nobody's saying you need to go take a five-hour nap, but how can we start supporting you in feeling safe for 10 minutes of rest? And we have tools that actually work that help you to steady your nervous system in there. And Daria, I would love for you to close by telling people where they can find you because I know you and Raphael are leading some really important work in learning about interoception, supporting non-speakers in their bodies. So please share a little bit about that.

SPEAKER_01 54:06

Yeah, so you can find us on Instagram and uh Substack at spelling the T on Autism. On Instagram, it's through underscore, so spelling underscore on uh the spelling the T on uh on autism. And we right now have a program called Get in Control Nonspeaker, where we support non-speakers in motoplanning through really working on one understanding interoception and how you as a non-speaker and you as a parent can support that interception. Because one thing that we haven't really talked about in this completely different kind of worms is that sensory system is as a part of a nervous system also has neuroplasticity. It's not a solid chunk that does not change. We can change it. We know we can. We, you know, we know that chefs who work on, you know, and taste things every day grow bigger parts of their brains in the you know tasting uh part, right? The more um of their brain is allocated to tasting. So the same true for non-speakers. Just because you don't feel your body now doesn't mean that you can't feel your body, you know, in a year. And we can work on those things. So getting control non-speaker is the program where we really focus on interception in various ways so that then we um create foundation for that motor planning. And then we go into understanding the volitional versus stimuli-based control and how, you know, what our movement is, how it works, and how to really get to purposeful movement. Um, and again, the difference between the stimuli and all of that, so that you can, yes, openly spell, but also just direct your body, start without prompt, like all of those different things um that support, you know, ultimately autonomy and independence.

SPEAKER_00 56:09

And we will have all of those links in the show notes so that they're easy for people to find. Thank you, Daria, so much for being here. I know that we will have many more conversations like this in service to others. So, all of you, thank you for listening. I appreciate you being here. Please do follow Daria and share this episode with a family you know who needs it. We're all stronger together. Thank you again. Have a beautiful day. Take care. Thank you for having me.