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Stop Looking for Someone to Tell You What to Do: Autism Parenting with Len Arcuri · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hey, everyone. Welcome back to the Inchstones podcast. I love learning more and more about the individuals in a similar niche as mine. Autism parents, sharing and serving this community, using their own skills as best they can. And I believe that Inchdons is about the smallest moments having the greatest impact. If you've been raising a child with autism for any length of time and have followed along on Inchstones you probably found yourself asking the questions like, why is my child so stuck? What am I? What am I missing? And in the autism world, those are probably daily and you know how overwhelming it can be. And today's guest is someone who I believe stands at the top of the list and has spent years helping families navigate the deepest of uncertainties. Lena Curie is here today. He's the founder and host of Autism Parenting Secrets podcast and he encourages parents to really think critically, logically. And my favorite thing is to stay curious to their child and to be active participants in their child's journey, their system, their biology, the nervous system and environment. And rather than giving one size fits all consulting to these parents, he really actively does individualized coaching and help making those goals specific to what the families need. So today we're going to talk about a lot of things. We're going to talk about root cause medicine, nervous system regulation, the search, the deep search for meaning and meaningful progress along the way. What every parent faces along this journey is how do we continue to pursue what's possible while fully loving the child standing in front of us. So, Len, thank you and welcome to Inchstones.
• 1:47
  Speaker B: Thank you so much for having me. It's, it's. I'm delighted to be here and I know you and I are so aligned on several of these key concepts that we would love more people to know. I wish I knew some of these earlier on, so I'm excited for this conversation.
• 2:01
  Speaker A: Fantastic. Well, we'll dive right in. You know, you built autism parenting secrets around encouraging parents to question all assumptions, ask better questions, and how do you teach in your practice parents to remain open minded without becoming overwhelmed, or have what I like to call that chokehold on certainty to discern what is actually true about the child they have and the child in front of them?
• 2:26
  Speaker B: Yeah, I think that's a dynamite question. And it really touches on this balance between accepting your child as they are now and not denying reality, but at the same time, really sincerely knowing much more is possible. And so really, you can have both of those thoughts at the same time. And I know sometimes that's challenging for people to find that Sweet spot. But that open mindedness is really key. And you mentioned curiosity at the beginning. You know, I didn't have those things really early on. I just wanted somebody once, the diagnosis with my son when he was 18 months, moderate borderline severe autism. And I didn't feel curious, didn't want to be curious, didn't really want to be open minded. I just wanted somebody to tell me what to do and to find the doctor or find the person. So I think this concept of being curious is super important. We can talk more about that. But the idea of being open minded, to be an intentional choice for a parent to say, I'm going to do my research, investigate, understand what's going on, but continually to be open to shifting as things evolve, as my understanding evolves. So that open mindedness does require kind of humility. And again, I feel like we all have that to some degree. But humility is really, really important. Cause otherwise strategy.
• 3:50
  Speaker A: Yeah. You know, so many ways you can take this. I often think that, you know, the age in which we all became parents to these children, you know, we were likely in our, you know, late second to third decade of life and so many of the things that had happened to and for us were what we expected. And so I think that you bring up such a good point about how it is a choice to stay open. And I think that is profoundly difficult when your life has, for all intents and purposes up to that point, sort of followed the prediction of what you anticipated. So you're, you might have thought that you were open minded to the parenting journey. But whoa, autism enters the question and goes, no, we're going to go a little deeper on that. Right, right.
• 4:33
  Speaker B: Yeah. And you're right. We may think we are. And there's degrees to this. It's kind of like particularly my wife Cass and I, before we had kids, we thought we ate healthy, you know, and that was, that was because, you know, we had Diet Coke instead of Coke in the fridge. And we made some changes on the margins. Oh yeah, we're eating healthy. But then obviously when my son came and we learned the importance of food, everything radically changed. So I do think that we all will say to some degree we're open minded. And even we may say, hey, we all have humility. We know we don't have all the answers, but I think really embracing that and coming into this journey with more curiosity and openness is incredibly important because you'll miss so many opportunities if you stay in this kind of bubble. At least I looked at myself as Feeling I was in kind of a certain bubble where I really wasn't as open and as humble as I really would have loved to have been earlier on. It would have made a big difference.
• 5:34
  Speaker A: It's one of the things that I believe so many of us feel like we're sitting in wiser ages than we are, because it really does give you the opportunity to. To learn humility in a way that you never in a million years would have thought had come through your child. Right. That comes through normally what you think of as, you know, experiences that you choose with other adults and pushing the boundary of maybe becoming a global citizen and traveling the world. That sort of rocks you to your core. When that lesson comes through this young child, that wasn't what you expected from the trajectory, you know, going on. You know, hope can be a very powerful emotion, and it can also make families feel really vulnerable. How do you help parents that come to you with incredible boatloads of hope and help them really distinguish things that are grounded in evidence, allowing that science is changing its mind all the time? That's the process of science, is that we learn more and the, you know, observations that they see are very real so that the. They can come to expect and accept their own journey for what it is to maybe take us through what that looks like with a. With a client of yours.
• 6:42
  Speaker B: Yeah, well, I think just in terms of the concept, and it's easy to get confused, but I think hope for parents to have hope, clearly that is a wonderful thing. That is a great thing. And without it, honestly, not much is really possible. So I think the hope, you know, to me is that just that that confidence that there's a better future is possible. Now, that doesn't mean a specific outcome. That means, hey, this is a journey and things can get better and you can have huge hope for something better for yourself and for your child. But then even, like, where it kind of becomes more real is faith. Right. And that's. Faith is kind of how we choose to show up each day. You know, kind of. Yes. Believing that a better future is possible, but then taking that and channeling it into actions that are positive and that can move you and your child in. In the right direction. So I think you can have hope and faith and even hope in a much bigger future. And that doesn't mean denying what might. What reality may be you currently right now.
• 7:55
  Speaker A: Yeah. You know, the emergence of hope always, again, kind of can knock you off your feet in a beautiful way too, because I think a lot of hope comes down to doing the next loving and responsible thing right. Hope sort of feeds off of you making just the next right choice. And that's always something that I consider in my own life, but has become so deeply apparent in raising Milly and Mac is, you know, allowing for the expansive nature of that next right thing to do. And that's where I think hope can find a lot of for parents. And I love that you share it because it's a vulnerable place to be in. It's very. It's a very you feel, you know, like, how do I know? None of us do. We don't. But I do think that the more we can talk about what that looks like, and I know that you are very specific about how you curate your coaching to each family. Like, what does that look like for the families? What do those families actually want? And I think that help has to be grounded in the realities of what those parents want out of life, too.
• 8:53
  Speaker B: You know, that's right. It's one thing to say, you know, hope or faith that things get better, but a lot of it. And how I walk alongside parents is helping them get super clear on what that is that they want for their child, what they want for themselves. Unapologetically, by the way. And I have maybe a contrary view with this, where I encourage the parents I'm gifted to be able to walk alongside me part of their journey. I tell them to go big. I mean, they get to choose what they're wanting. And the key word is wanting for their child and for themselves. And I just feel like the more clear that destination is, that really informs how you show up, what actions you take. Without a north star of where you're wanting your child to go and where you want to go, it's just a meandering journey. And so that's where every parent gets to decide what that looks like. I find that parents often have a hard time articulating that, so I help them. Not telling them what the destination is, but helping them to provide more, to flesh it out, to have it be more expansive. Because, again, if you know where you're going, then again, that changes so many things. And the irony here, or what might be a little bit controversial, is I do feel like having a big, bold future, unapologetically is useful. And I think that's better than having a vision that's a minor improvement over what's happening now. Because if you really have a bolder vision, then what it does is it really helps to rule out a lot of paths that won't get you There. And for me, what it does is it really helps parents to see the benefit of really having a plan, a strategy which many parents don't, and having that plan really be root cause focused because that's how you move the needle the most. So I think the hope is manifested by some clear vision. And once that's created, it helps bringing you back constantly to, hey, am I channeling my limited time, energy and money on the things that my child needs the most now? Because as you know, there's a sequence to this and a lot of those actions that I talk about, these aren't expensive interventions most of the time. It's really just how I was moving, how I was interacting with my son. So again, it really just helps help me get clearer on which root causes to focus on what then help that I need in terms of a medical doctor or therapist or whatever the case may be. So I think early on I was just kind of moving on to whatever was next, whatever was being recommended. And I just think there's a much more intentional way of navigating this. And it starts with that bold, audacious future that you as a parent, you're entitled to want what you want. The problem comes when you're too, let's just say, attached to a specific outcome that can create a lot of friction. So I think having a want instead of needs with respect to what you want for your child is a really important concept.
• 12:16
  Speaker A: Yeah, you know, you hit on root cause medicine and it's something that I believe is really swirling beautifully in this community now because it invites us to look so much deeper at the cellular level of a child when, especially when years and years of your path has just been, as you say, like guided by others telling you try this, try this, try this. And your, these challenges just continue to go on despite all this like tremendous heavy effort by, by parents who just think they're just being siloed and led by people who genuinely, genuinely have deep care. But it, it, it ends up landing in a way that I believe causes much more deeper confusion. And how do you think you know the tension or think about the tension of continuing to search for answers and root ca. You and I are both aligned with Beto Health and the discussion and building out of the Leucavorin prescriptions, accessibility to parents of children with autism in this country. And I'd be remiss to say that you and I are not one Cure all devotees in any way, but we really dive into cellular and molecular parts of this journey. So how do you share that with your clients and, and understanding that there is so many different barrels of this when it comes to root cause.
• 13:39
  Speaker B: Yeah, I, I think the concept of root cause, which I admittedly am obsessed with and that kind of goes not just to, you know, the journey with my son, but even before then. What I did before shifting careers was being obsessed with root causes with respect to huge financial organizations and why they weren't functioning the way they could. So that's where I can go long about that history. But just know that yeah, in our prior world, which was more financial related, a lot of my work morphed into process improvement type work because these companies had very dysfunctional processes that didn't work really well. So I eventually got certified as a Six Sigma master black belt, somebody who's really good at re. Engineering broken processes. And a big part of that is to figure out what's at the root of why that these processes aren't working well. And so all that naturally was very useful as it came to my son. So I think this concept of root cause and yes, functional medicine maps providers MeadowHealth and what they're looking to do. Root cause is such an important component of again, channeling your energy and resources in a way that might move the needle the most for your child. And I don't think as a parent, I'm never done focusing on the root cause for my son or myself. So it never stops. But I think that curiosity, why you're asking, you know, root cause is just another way of saying I wonder why. So I wonder why my child's presenting the way they are. I'm wondering why speech is a challenge. I'm wondering why the behaviors. So I think this kind of daily endeavoring to unearth these root causes never ends. I mean, it doesn't end for me, for my own personal health.
• 15:24
  Speaker A: No, it doesn't. And we are, you know, the only thing that's, that's constant is that time is moving on. And we are. I always say these children are growing now. It doesn't necessarily mean that we are completely understanding of what that growth is, but they're growing and they're changing and they're developing something in some capacity, you know, part that aligns so, so, so deeply with root cause for me. And I, and I couldn't agree more that I've taken much more of a proactive approach to my own health journey because of looking at this for my children. But I. One of the pillars of Inch Jones in so many ways is that I believe that parents are 1000% these chief investigative officers for their children. And whether you are conscious to it or not, you are tracking your children's behaviors, their health, their sleep, their regulation, their communication in a way that you might not even realize is so hyper specialized. And I think when you remind mothers and fathers or caregivers that they are doing that, whether they are conscious of it or not, it gives them so much power to be an active participant in their child's journey. I don't know why, as a society, and I'd love to hear your thoughts on this, we've come, we've discredited or we discount these observations that the parents see. Perhaps it's because autism and this whole population has exploded so much that we don't have a foundation of trust in the parent population. But I believe it is so deeply baked into the role of a parent that I know that there is nothing that I track or collect, you know, in a data sense for both of my children and my typical developing child either too. Right. That would, that would be anything but beneficial to their journey. So I'd love to hear your thoughts on that as well.
• 17:17
  Speaker B: Yeah, no, I think that concept, right, of the observations of the parent, the voice of the parent, you know, that is, I think the answer to your question is that basically society operates in a way that diminishes it just in terms of the structures we have where there's experts and then there's parents. Right. Who are just participants, let's say. So I just think the way the current construct is, it does diminish and marginalize parents, no question about it. I mean, obviously one way that you can get around that is by selecting very carefully who is around you. Right. Who is your, let's say, pediatrician, medical practitioner. There are practitioners who really could care less about what a parent brings to the table and others who really value it. And so that's where you can stack the deck by making sure you're choosing wisely who gets the privilege of being on your team, on your child's team. So I think, but I do think overall the system that's out there of you have a child that eventually gets a diagnosis from a developmental pediatrician, you get this paper and this formal diagnosis that then lets you get services to be able to help your child. But all those services really are about helping you to manage and cope and maybe to make some improvements in certain areas. But none of the current system gets to the root cause truly of what's likely holding your child back. That's why that root cause strategy is so important. And parents absolutely need to take really good educated guesses on which root causes to focus on.
• 18:53
  Speaker A: Yes.
• 18:54
  Speaker B: Because that's the art of this. And there's no one who's going to do that for you. That's the role of the parent, and that's why I do the advisory work I do. And it's not only for a parent to uncover what root causes are holding their child back, but it goes back to the humility we need to, as parents, figure out what's holding us back from. From being that decision maker in chief, that CEO of this journey. And I know I wasn't raising my hand to. To claim that role. I didn't want that role. So. So I think overall, the system is designed to minimize the parent's role. And again, parents, the more you can see that you, without question, are the key in this journey, how you navigate this absolutely influences your child's trajectory. And if there's any part of this journey that's feeling heavy, hard, frustrating, I can guarantee you that 99% of that's being driven by the mindset you have, the beliefs you're holding. And that's something we as parents can absolutely change and influence. We can't necessarily control exactly everything that's happening with our child, but we can control how we show up.
• 20:04
  Speaker A: Yeah, I couldn't agree more in that. Again, the beautiful byproduct of that is that it ends up translating into your own life. I know you and I talk with parents all the time in different capacities, but I find that when mothers specifically that I work with, you know, when it comes to IEP meetings or obviously that's a totally different sector of this population, but that when the power is put back into them, and it isn't because you or I is giving them power, they actually had it in them the entire time. It's just that it's like, not to be like, you know, the historian here, but it's like, you know, when Michelangelo was chiseling away at the marble, he. What he was revealing what was already underneath. Right. Or I know there's a. I believe in Chinese, Asian art, there's the idea of the block of jade and what it reveals. So in Western culture and medicine, it's always like, here's the blank canvas. Paint the strokes and have the art or have the child. Right. And it's just the total opposite in a different part of the world. And I think that we're trying to find this beautiful synergy of both. Right. And challenging the system to say maybe but what about X? Possibly. But how about trying this? And it is so life giving when you do that for your child or you coach a parent into it. And I just, I think that that's where I think the best of our work aligns, is that we, and I hope anyone listening realizes that there's no one out there that can share or understand what you have already in you to come out for your child and to help them become the best version of who they're meant to be. Len, you know, the meaning of Inchstones is always about these slow, incremental, unseen things that parents are aware of or sometimes they're not. You know, how do we hold the truths together for greater health and function while sort of accepting the reality? I was just down in D.C. on behalf of the National Council on Severe Autism and I shared with you before we pressed record that reality can be very heavy. It can be a very taxing on your, on your body and energy. And how do we hold the ability to find the energy in pursuing the exacting nature of greater health for our child while also being honest about the reality in front of us and their, and how they're presenting.
• 22:25
  Speaker B: Well, being honest about the reality and what's happening, as challenging as that may be, that that is incredibly not only important, it's required. Right? We don't want to live in a fantasy world. Right. And I know early on I didn't notice so much of what was happening with my son because you look at it with, you know, rose colored glasses and, and I look at photos now when he was quite young and he didn't look as healthy as I kind of remember. So I do think being grounded in reality is helpful and it's hard for us to be objective as parents, but, but that's where I think this whole concept comes to really looking at your child however they are right now as they are now, and truly looking at them with unconditional love, with complete acceptance as they are now. And you can hold that thought while still wanting more for them and wanting, wanting for them to progress and to develop and hit milestones. So I think the step that is often missed is this full 100% complete acceptance of your child as they are now. And that might be hard because you may see things that you absolutely don't want. I know that was the case for me, but looking back on it, I know I was so in love with my son. I would always say that I love my son unconditionally, but it really was a lie. I was in love with the version of him I wanted him to become, the version I saw in front of me with no language. Right. He had some words he had regressed with the significant behaviors, with the significant GI issues and, and, and all those things that we know come with the journey that are so hard as a parent to see. I, I really was un. It was impossible for me to accept all that because I felt like it was throwing in the towel, like, you know, waving the white flag. If I accept him as he is, then I'm basically, you know, there's nothing to do. Right. What more can I do? So that's not what it means at all. Took me a long time to understand that. So you can absolutely love your child as they are now. True, unconditional love. And from that much stronger, more peaceful place, then you can say, okay, now there's work to do. I can take actions that can help my child. Maybe for some parents that's a whole slew of interventions, expensive interventions that they feel comfortable making. Or maybe for another parent that's just them even more doubling down on the energy they're exuding to their child on a day to day basis. And so that's why there's so much we can do in terms of interventions. But it might be interventions on ourself in terms of just how we are because our kids are feeding off our energy. And that's ultimately. You mentioned about, you know, my work with some clients. That's the magical transformation I see time and time again as parents go from the state of some state of anxiety to where they truly have a confidence and a peacefulness as they're still finding answers, but it's coming from more of a place of excitement about what's possible as opposed to that anxiety about what's happening now or what happened in the past or worry about the future. That's how powerful it is for a parent to change their state, which they have 100% ability to do.
• 25:31
  Speaker A: They do, you know, obviously, and respecting privacy. Could you give us maybe in a condensed form, like what it might look like and what you experience with a parent that comes to you. And maybe just, you know, could you make up an example of what is being brought to you and how you've seen that road and your advising of them, how that emerges? I'd love to hear more about that because I think people would be so fascinated by the actual process.
• 25:59
  Speaker B: Sure. No, I could definitely walk people through that. And maybe just as a preface, I want to say, I am not a person who feels like they have all the answers and will then take you lowly parent and tell you what to do. Right. I am not that person. They exist. And what I've become obsessed with is what you do for your child. That's totally your decision. But how you navigate, how you understand what's happening, how you think about what's happening, how you make decisions, how you follow through and implement and take action, that how you're navigating, that's definitely something that you know with humility. I feel like I'm a real expert on all what are all the traps, what are all the ways that a parent can actually navigate more powerfully? And that's what people who work, who choose the advisory work are coming for. They want to be a decision maker in chief. They may not feel like they're qualified right now, but they know that's important. And then my job is to help them see. Okay, here's how you are navigating now. So when parents start, there's a detailed assessment I developed over 10 years to quantify exactly where the parent is. I call it an all in parent power score. But it's kind of like a child with autism, like an ATEX score that gives you a quantified sense of where the child is. And then that's really powerful having some measurement to help guide you. And just like in atec, whatever the number is, the number is. But your goal is to help that number come down over time. I've found a way to assess any parent not only where there are opportunities to improve are, but where are their superpowers to leverage. And so they get a score at the start of the program and whatever that score is, it is. But our goal is to help increase it. And I've just found after working with dozens of parents with this particular program, that parents generally, they're not starting with a really low score. These are powerful parents, but they know they're not running on all cylinders and it's clear they're not. And so with clarity as to where that friction's being generated, where is it that they could with intention shore up whatever that weak spot is on how their decision making. That's the beauty of this process. So all parents get that starting score. We dive into the program and it takes many forms. But I've moved from like zoom calls that happen periodically, periodically, to a more real time way of helping parents get the guidance get, get that real time support without having to wait for periodic standing calls. So it's a more fluid way of meeting parents where they are and giving them the support when they need it. So that's the nature of the program is not a one size fits all. I used to have, of course, especially with my wife Cass, when we were doing this together, we created kind of a step by step sequencing. And a lot of those modules are powerful, but again, every parent's so unique that one size fits anything isn't the fastest way. So I've found a way to share with a parent, whether it's a learning module, whether it's a podcast episode, whether it's just giving them the opportunity to vent in real time. There's lots of different ways that parents can make changes within the moment to operate at a higher level, to reveal more awareness into what's happening with their child or what's happening with them. And that's how I help them increase that score from wherever they are to something higher. And that goes to what you were saying, where all parents have untapped capacity. All parents have innate superpowers and abilities. But we all have aspects of how we operate. We've been programmed ourselves, we operate a certain way. But it's likely the way you're operating now isn't going to help you get what you really want, which is for you to become the parent your child needs now and to make decisions that increase the odds of helping your child thrive. That's what this is all about. So if you don't work on how you're operating and just go with your current programming, I see time and time again that's where parents leave. They then have as a consequence a journey that feels much harder and the progress that they're seeing in their child is much slower unless they do this, this jump. And I'm not giving any, I'm not giving them anything that they don't already have, as you said beautifully.
• 30:25
  Speaker A: Well, I think that you're tapping into something I also love is, you know, life is emergent. And I think that we need to be able to meet people when those things emerge. And I like that you that you've even evolved your own advocacy or advisory work in that capacity because it really is true. I see more and more services for this population that almost require that to be baked into it. Because we have to know that On Tuesday at 4 o' clock, the issue at hand is not the next Tuesday at 4:00, clock issue at hand. That's just not how life works, especially with children with autism. And so I think that you're reminding us that emergent day to day things and having the capacity to then Connect with someone while those things are going on really can make the process of deciding and making decisions better and more quicker in a. You know what? This whole world that we live in, that's just vuca, you know, just volatile and uncertain and chaotic conditioning. Lyn, I'm just very, very thankful for your work. And I know that we've gotten to know each other's work more and more as I appreciate this conversation just leaves room for that two truths can exist at the same time. It's so foundational, I think, as we grow as parents of children with autism to pursue better health and better regulation for not only their child, but for themselves. And to every parent listening, I hope today's conversation really reminds you that you don't have to know all the answers right now or next week. Your job isn't to become the leading expert on every facet of autism and that you just have to. You get to keep noticing your child, you know, to keep asking thoughtful questions and to keep moving forward what I call one inchtone at a time. Len, thank you so much for the work that you're doing and thank you for joining us today here on Inch Jones. I think this is gonna be resonant and powerful for so many listeners.
• 32:22
  Speaker B: Well, thank you so much for everything that you do, Sarah. It's been an absolute honor to be on, to be able to talk about some of these really important concert. And again, I just want to leave parents with the fact that, yeah, to some degree as parents, none of us have been set up for, you know, we've all kind of been programmed a certain way and we've kind of been set up for stress in many cases. But you can absolutely, as a parent, get set up for success and just know you are truly the force multiplier for your child. You know, if you really accept that, you wouldn't. You won't discount your voice. You'll notice and confidently put what you're seeing into action. And again, other people may not be cheering you on to do that, but again, you are the key. And the more you raise your hand and step into that role, your child is definitely rooting for that.
• 33:12
  Speaker A: I love it. Well, thank you again for being here today on Inchstones and everyone, thank you for listening. Until next time on the Inchstones podcast.