Latest / Inchstones with Sarah | Autism Advocacy & Caregiver Stories / Beyond the Autism Diagnosis: Seeing the Child Before the Label | Dr. John Gaitanis

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Beyond the Autism Diagnosis: Seeing the Child Before the Label | Dr. John Gaitanis · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hey, everyone. Welcome back to a really exciting episode here on the Inch Jones podcast. You know, Inchstones is where I, along with every mother and caregiver, believe that every child deserves to be understood beyond their diagnosis. And today's guest, I have Dr. John Gaetanis here, board certified pediatric neurologist, co founder of Meadow Bioscience, and a physician focused so deeply on helping families understand the biological factors that control contribute to autism and other neurodevelopmental conditions. Dr. G's work centers really on what I believe is bringing personalized medicine into autism care, including the thoughtful use of leucovorin for children who may benefit. And I am so excited to hear what Dr. John has to share with all of us today. And thank you so much for your willingness to approach autism from both such scientific curiosity as well as humility. Dr. John, thanks for being here.
• 0:55
  Speaker B: Thanks. I appreciate you having me here.
• 0:57
  Speaker A: So we have much to dive into. I want to start with flat out just saying, how do you as a neurologist distinguish between treating autism itself and then treating those underlying medical conditions and comorbidities that are obviously contributing deeply to the child's challenges?
• 1:16
  Speaker B: Yeah, I'm going to. I'll step back even for a second and mention that one of the approaches I take in thinking about autism and comorbidity is, is really whether I should even use the term autism in approaching a kid. For me, as a clinician, because the term itself is so broad that it essentially loses its biological credibility, if that makes sense. So you think as a physician, we're trying to think about the pathophysiology of the condition? What's the actual underlying root cause of what's happening? Why is there a concern neurologically? And if I'm using a term that's so incredibly broad and is not rooted in biology, then I risk losing my ability to make the correct underlying diagnosis and lead to the correct treatment pathway. So that. That's my intro to that question. But. And then I'm going to, like, approach it a little differently too, because we use the term comorbidity. But I think that term sort of implies that these are separate conditions that happen to cluster together. And that's, that's not the way I generally conceptualize it. I really think of it as the same, you know, different symptoms of the same underlying root cause.
• 2:26
  Speaker A: Interesting.
• 2:27
  Speaker B: Is a different way to view it. So, you know, the very simple analogy is like, if I have a cold, I, you know, I'll, I might have sniffles, cough, fever, and, you know, congestion. So those I, you know, I wouldn't be diagnosed with, like, a diagnosis of sniffles, a diagnosis of cough, a diagnosis of fever, and then you send me to the sniffles doctor and the fever doctor and the cough doctor.
• 2:48
  Speaker A: Right.
• 2:48
  Speaker B: And they each prescribe a different medication for that symptom. That makes no sense. And we don't call those comorbidities. These are, these are just symptoms that are, you know, rooted in the same underlying cause.
• 2:59
  Speaker A: That's right.
• 3:00
  Speaker B: Okay, so that's my preamble. So why I'm saying that. Well, you know, I think from, you know, like, more than a couple of decades of really following the same kids, I think what's really clear is there, there exists very different patterns which of kids that I think are truly distinct biologically. And, and, and at the same time. So I'm going to push back a little on the spectrum idea. Right. I'm not.
• 3:25
  Speaker A: Yes, please do.
• 3:26
  Speaker B: Sure. These are. Right. I'm not sure these are parts of any spectrum. These are truly distinct, you know, biological entities and the, and so. But I, I think that when I'm approaching that, I, I have, I can't help but ignore the fact that so many of the kids have inflammatory conditions, like so many. And this is more prevalent in the kids who experience neurodevelopmental regression. And so if I see a child who had neurodevelopmental regression and who also has inflammatory bowel disease, arthritis, eczema, asthma, like any host, eosinophilic esophagitis, like, it goes on and on. So all of these different inflammatory conditions. It's hard for me to ignore how many kids who had neurodement regression also have systemic inflammation. And then. So a different way to conceptualize this is not that you have a. A, you have a brain condition and B, you have, you know, an inflammatory condition. You know, what if we really view it as more that you actually have an inflammatory condition and that inflammatory condition affected the trajectory of brain development right.
• 4:25
  Speaker A: Now, why, why would a mother. Because I remember thinking that I had a lot of these, like, very intuitive thoughts, you know, early on with both of my children. What is it about that conceptual process that you just described that makes so much sense, is not landing in the offices with mothers and caregivers early on. Why is that not something that's discussed so openly or at least as a secondary thought process to all of this?
• 4:51
  Speaker B: Wow. That. Okay. That there's so many parts to that that I could probably speak for an hour on all, all the different reasons that we don't think this way. But I'm going to start by saying actually in, in a. In a very strong sense, a lot of the moms who've been through this journey are actually have much greater insight than the clinicians do. And what gives them that insight? There are a few things. I think one is one, one is instinct. I think to some, you know, to some degree we can't ignore the role of that maternal instinct that identifies that something more is wrong. And we haven't just chase down that answer. I think that's a, you know, I think your gut instinct often leads you in the right direction. But sometimes in medicine we don't rely on that enough. Although for.
• 5:34
  Speaker A: I oftentimes, I often think, though it's. I know that we use the term maternal instinct or innate knowing. I really think it's a unconscious pattern recognition that we're sort of logging underneath our, you know, what we're. What we're taking in consciously. Right. Like, that's what I feel like that is. And again, because of not having one yet two children, that, that what. That's what seemed to rise in me is that it wasn't that I had this like, aha. It was that something was keeping track underneath. And that's what I think it sounds like you're speaking to.
• 6:05
  Speaker B: Yeah, I think, Yeah, I think whether it's. Whether it's like a heart to heart thing or like subconscious, you know, kind of more mental framework, it's. I think the fact remains that you're with your kids every day, you're intimately connected to them and you feel like you truly feel to some degree what they go through. And when something more is wrong, you feel it and you feel that sense that we haven't searched enough. But the physician doesn't get that sense. They're really just looking at the numbers, the labs.
• 6:35
  Speaker A: Right.
• 6:35
  Speaker B: And it's a little bit more cold and calculated. So I think what happens is a lot of the moms have had that sense and who they tried turning to their doctor, but their doctor didn't always listen. So then they turn to other moms and other moms confirm what they're feeling. And then it turns out, yeah, my kid has eosinophilic esophagitis too. Like, isn't that interesting? My kid has a lot of GI pain and inflammation. My kid hasn't had a formed bowel movement in 10 years. You start to hear the same thing again and again and you hear stories that really resonate. So I get that too. As a physician though, I do Hear the same stories again and again. I think the question is if I stay in my lane entirely and I don't listen to the asthma, eczema and GI inflammation because I'm a neurologist, then I'm not really getting, I'm not allowing myself to hear the fullness of what's happening. Right. The parents, though, are not restricting themselves in that way. You know, they're, they're, they're listening to the fullness of what's occurring with the kids. But I think physicians, you know, we are siloed. So that's, that's really how we structured medicine. You know, we, you go see a, you know, I used the cold analogy before about the sniffles doctor, the cough doctor. It seems absurd, but no more absurd than the fact that we train as a gastroenterologist or cardiologist or neurologist and focus on these systems as if they're completely isolated from all the other systems and they're not.
• 7:55
  Speaker A: Yeah, I mean that, that, that to me is always rises like, so it's illuminated so predominantly every single day. How are we divorcing these, how are we divorcing these systems? And what has become a point where, well, don't think about it like that. Like it's almost this like, you know, societal conditioning that we are been told for decades as, you know, a geriatric millennial at 43 years old, you know, since I was little, these are separate processes, but it's all one body. It sounds so basic to me and I know to so many other mothers as well. And I'm thankful that you're discussing this because systems thinking is something that I love.
• 8:29
  Speaker B: Systems thinking is really critical to medical education. And we've developed a system where we silo everything and we do that, you know, I guess for convenience. To some degree it seems like it works. But ultimately what happens is you get siloed into your one area focus. The communication also breaks down too. And the patient is left trying to pull together a multi systemic condition through multiple silos. It's not ideal. Right. From the patient's perspective, just doesn't work. And every patient needs a quarterback. Like every patient needs that one doctor who sees the big picture and hopefully that doctor who gets to the root cause. And that's, you know, and this kind of speaks to how I got involved with the Medical Academy of Pediatrics and Special Needs and which I'm on the board of. But the, you know, I needed to really connect to clinicians who get to the root cause and who don't silo and to think of the bigger picture and then also to take it one step further, but to also think about healing, which is something we also don't learn in medical school. So nowhere do we actually learn really what healing is. Right. So, so I, and again, I can go on for a long time about problems in medical education, but I'll, you know, it's one thing to recognize is that we learn, we learn how to imagine. So it's a terrible analogy, but I have to state it. A lot of medical education is a little bit similar to if you think back to 9, 11 when the terrorists who were learning to fly jets learned to take off and fly but did not want to know how to land. And that to me resonates with our medical education. I learned how to diagnose a condition and treat it, but nobody taught me how to get that patient to healing. Nobody taught me how to deprescribe. Deprescribing is not part of my education.
• 10:11
  Speaker A: No. I have full body chills. You telling me that.
• 10:13
  Speaker B: Yeah. So we have basically given you think of how we send doctors into the world. So now we've siloed them, right? We've given them the keys to the airplane, we've taught them how to take off and fly, but nobody's ever taught them how to land that plane safely for a patient. So what's the end game? You know, when we think of a lot of the medications, treatments we use, what's the end game? Are the patients just expected to stay on these meds for the rest of their lives without ever chasing down a root cause? Is that the, is that considered success?
• 10:40
  Speaker A: You know, I, I'm on a number of text chains with autism moms. Right. Of 30 plus women in different, you know, social media or just via text on my phone. And none of our children present exactly the same profile in their profile. You know what, why can two children, or I have 30 moms, there's probably, you know, 50 kids amongst all of us with an autism or in a whole body apraxia diagnosis. Why can they have such different biological profiles? Why does this, that, that sometimes it's it, it sort of brews this extra confusion amongst the mothers and caregivers because we think, well, we both have all, we all have the same diagnosis. Why is it so different biologically underneath?
• 11:24
  Speaker B: Yeah, well, actually I'm going to go, I'm going to step back one second, then I'm going to get to that. If that's okay.
• 11:29
  Speaker A: Okay, yes, absolutely.
• 11:31
  Speaker B: Because I was still. I'm still very happy to continue to criticize my field.
• 11:37
  Speaker A: Okay.
• 11:39
  Speaker B: And it wasn't. It wasn't done just yet. I'm still. I was on a roll.
• 11:43
  Speaker A: Is honey. Is Honey Renicelli calling in, too, to. To help you with this?
• 11:48
  Speaker B: I don't have an earpiece.
• 11:49
  Speaker A: You don't have an airpiece. Good.
• 11:52
  Speaker B: So let's think real quick about the DSM 5 criteria of autism. And this kind of ties a little into your question. Right? Autism is defined by psychologists who, you know, the adas, which is a test that's not really rooted in biology. It's more, you know, based on behavioral observation. The DSM 5 criteria is simply, you know, disordered communication, the social impairment, and then a restricted pattern of behavior. So let's apply that. And then, you know, it has to create, at some level of dysfunction. So based on those criteria, I would say standard medical training in the medical community clearly fits the diagnosis for an autism spectrum disorder. So, you know, physicians, in the way we practice and the way we're trained, they don't communicate well. I think most families know this. They. Socially, there's some impairment there because they're not really connecting on a certain level with their patients or the families. And there's definitely a restricted pattern of behavior that's occurred. We keep beating the same drum, and we're not seeing improved outcomes.
• 12:50
  Speaker A: Right.
• 12:50
  Speaker B: And so, you know, so you have a medical community that actually meets those DSM 5 criteria. And that, in a sense, shows you. It shows you two things. It shows you, A, how absurd the medical community has been in this field, and B, how absurd the DSM 5 criteria are.
• 13:06
  Speaker A: Right. That's so true.
• 13:09
  Speaker B: So that leads into your question, which is, you know, so the kids are so different. Well, because we're using language that is not rooted in biology, and we are not. And it's not rooted in the root cause of what's going on with that child. And what I would counsel any clinician to do is actually completely remove such terms from your vocabulary when you evaluate the individual in front of you. Like, don't see that word. You know, really see the kid, hear their stories, hear about their symptoms and what's. And what. And how. What their history has been to get to this point and make a determination in terms of the workup, the evaluation independent of that word. Because I really think the. The term autism has, unfortunately, it has resulted in, you know, like, tens of thousands of kids who've never really been properly worked up, kids who've had neurodevelopmental regressions without an answer because they were told, well, that happens in autism.
• 14:03
  Speaker A: Right, right.
• 14:04
  Speaker B: And I'll give you the clear example, like, and this makes sense intuitively, but you know, if I, if I have, let's say I have a stroke and I go to the emergency room and let's say I'm 75. If, if, let's say a 75 year old suddenly loses the ability to speak or to walk or to move the right side of their body, one can say that, hey, that just happens in 75 year olds. And it's true. It does just happen in 75 year olds. Right. That's a true statement.
• 14:29
  Speaker A: That's right.
• 14:30
  Speaker B: It doesn't mean I shouldn't work. Work.
• 14:33
  Speaker A: Right.
• 14:34
  Speaker B: I've lost an opportunity. I've lost an opportunity to understand what the cause was and treat it. But the most important thing is because I didn't work it up, they remain at risk of stroke. So now I've sent this patient home without really understanding the root cause, they remain at risk of a stroke in the future, and I'm basically sending them out at risk of future concern. How is that, how is that acceptable as a physician? How do I, you know, how can I justify that sort of action? Because literally we do that every single day with kids diagnosed with autism.
• 15:08
  Speaker A: So then take me through then what are we to do? Like what then if that is the case and a mother is coming to you with their child and you are doing the workup, what is the next right thing? Because if the mother and parents agree that that makes the most sense and that they're taking in, they're learning about all these root causes and want to do the next right thing, what does that workup look like?
• 15:29
  Speaker B: Well, I only like to talk about problems. I don't like to do solutions.
• 15:34
  Speaker A: Okay, just like no solutions. Come on.
• 15:38
  Speaker B: Why you.
• 15:39
  Speaker A: It's, it's Friday. Sorry, we're gonna make some jokes here. Yeah, yeah, yeah.
• 15:42
  Speaker B: I just like to whine. I just like to whine about the problems. Okay. No, you get to the solutions. So, yeah, how do you do, you know, how do you get to a better understanding? I think, honestly, I think a lot of it is physician training plays a major role. Again, I'm leading that back to the maps and what we're trying to do, which is train physicians to think differently, to be more focused on root cause, which I think is critical, but it is missing in our medical education, unfortunately. So focusing on root cause medicine, focusing on healing pathways, really, really important, you know, concepts to, for physicians to understand a lot of that is training based, unfortunately. But then I do think there's another path, which is really interesting, which is that. And I, you know, we don't know how this will shape out in the future, but I really think that there is going to be a role here for artificial intelligence. I know, like, I know that it's so spoken about, and I don't want to just be another bandwagon person speaking about AI, but the fact remains is that we have tools now.
• 16:39
  Speaker A: Yes.
• 16:40
  Speaker B: That can put together, like, really large data sets. Right. Really large symptom complexes and really find answers. And we have a number of studies that have shown that in many situations it does a better job than the physicians do.
• 16:53
  Speaker A: Yeah. And not in a way to discount what the human, you know, variable is in all of this and what the mother is sharing, what the clinician is seeing. I can only imagine what it's able to produce on a large scale. And like you said, there are many, many, many different variables that go in at such a large number of children.
• 17:11
  Speaker B: Yeah. What I think is going to happen is AI may offer the ability to support what the moms have already known for decades because moms have, you know, I mentioned how the medical community fits DSM 5 criteria because there's not communication, there's social difficulty. Well, the moms never face that. Right. And the restricted patterns of behavior, the, the, the army of parents affected by this are interconnected and they communicate and they have not been limited by, by some kind of concept or approach that they were taught. Right.
• 17:42
  Speaker A: So they, we are, we are a decentralized, you know, network.
• 17:46
  Speaker B: You are, and, and, and an army. Really, we are in a really good way. And, but what, what was lacking because you, you speak to so many moms and, you know, like, these are the things that resonate. These are the things that keep coming up. These things must be important. I think what AI will do is when you start to look at this over scale, I think you begin to get much more objective readouts on exactly what your gut has already shown you. So what I mean by that is like, we can put together, you know, imagine if you have data sets on a lot of kids. You might start to see, well, boy, the gut microbiome is wrecked in a lot of kids. Their inflammatory markers are abnormal. There's, you know, there are going to be subsets of kids. We might, if we do mitochondrial testing, we might see that mitochondrial functioning is impaired. So you do this in kid after kid after kid, and then you kind of compare it to the phenotype of the child, you're going to start to see patterns much more objectively and clearly. And in a way, it's going to communicate what the parents have known for decades, but it's going to communicate it in a way that is really undeniable because it's going to be like a data driven approach.
• 18:48
  Speaker A: Right, right.
• 18:49
  Speaker B: The simplest way, the simplest example of this, I think, is the motor impairment. Like Elizabeth Torres at Rutgers has done an incredible job really documenting objective evidence of this motor impairment and has even gone as far as to create an app that can just look at video analysis of the face and, you know, show really objective evidence of motor impairment. It's pretty undeniable once you see that. And that becomes harder and harder to not to acknowledge that there remain a subset of kids who clearly have a motor impairment.
• 19:20
  Speaker A: Yeah.
• 19:20
  Speaker B: And so. And that's not part of the disease.
• 19:23
  Speaker A: My two. I always say, I don't even know if they have an autism diagnosis. They have full body dyspraxia, without a doubt. And it, and it's different for each of them, a boy and a girl. And I can see the difference even in the sex. But you're absolutely right. The motor impairment is one of the most debilitating parts of all of this.
• 19:41
  Speaker B: Yeah. And so you know that as a mom, you know, it's obvious as a mom. And then, you know, scores of other kids that you've met and worked with and you can see their motor disability, it's like to you, because you've seen it and you recognize it, you can't unsee it. So now it's incredibly obvious. So now you're faced with all these kids with motor disability, and then you go to your doctor and they say, I don't know what you're talking about. Right, right, right. And that, that creates a breakdown because it's like, how do you not see this? Right.
• 20:09
  Speaker A: Well, it's a psych. It. Then it becomes, honestly, this completely different container of like, psychological gaslighting in a way that I do believe is such a detriment to the mothers and caregivers that I serve. It. It is, it is so prevalent in, in every conversation I have is that they feel like I know what I'm seeing, I've logged what I'm seeing. And I'm someone. I mean, I've been, I've been given, I've been. I brought in charts to some of my doctors to go, these are beautiful. And I go, I have to be able to do this, because if I don't, I'm Going to feel gaslit by what's being said back to me because I definitely just took record of all of this.
• 20:45
  Speaker B: It's, it's awful that you have to go through that level of detail and you know, analysis for the doctor to really believe what you could just express verbally. But, but I would say that this is actually another tool where AI is really helpful for parents because you can enter, I mean, if you trust putting
• 21:02
  Speaker A: it in the AI system, you can
• 21:04
  Speaker B: so much data and it could synthesize and summarize it and then you could ask for a one page readout. Very simple, one page, give that to your doctor. And I've had parents who've done this where they've even had a picture of the child on the top, laid out their whole history in one page. Really clearly. All the key issues are like bullet point. It's not a bad idea to have that. And then it's not a bad idea to have an AI show if you have the data, like when did the self injury regression occur or when did seizures occur. And then you can use an AI to like help kind of identify if there's any relationship to specific circumstances. It sometimes helps synthesize it and create the graph and show things visually and most, you know, speaking, you know, for myself at least not for all physicians, but I'm a pretty visual learner. So if you show me a visual chart, I'm like, okay, that makes a lot of sense.
• 21:55
  Speaker A: Absolutely.
• 21:57
  Speaker B: So it's a tool that could be helpful there. I think you shouldn't have to go through that extra effort. But I think what we're, you know, speaking to here is the fact that tying into how the kids could be so different. I think as a parent you see it because you're more socially connected to families. You see the kids and you can almost like feel the issue. It's like a gut level thing. I think sometimes physicians are getting lost in the word autism and they're making a really dangerous assumption that because they share this word that's not rooted in biology, that these kids are somehow linked just based on that word. If you took the word away and you just look at the kids, there are certain patterns of kids that are just completely unmistakably different, without a doubt.
• 22:36
  Speaker A: I mean, I obviously take in different stories and anecdotes all day long. And my children and those of my young know fellow parents at, you know, a private preschool and educational system, it is hard to think that they have the exact same diagnosis. It is very difficult to sit in a room in a special education classroom when a child has a helmet on and my daughter is using an AAC very, you know, proficiently and wondering, explain to me right then and there how this is the same. Because if I go into a different hospital on a. I guess a floor that's for wounded veterans, wouldn't it. Wouldn't that. Wouldn't the. The symptoms be similar? Wouldn't the limb. A limb is lost and a limb is lost. It doesn't feel the same for. For this community.
• 23:25
  Speaker B: Yeah, it's not. I think maybe I'll give you a little sense of how I approach it as a clinician then, because the, you know, the way what I'm trying to do in the room is I'm really trying to see and understand the kid in front of me. Not that. Not the label. That's. I mean, it's a really important piece. And so I. I start with the history. I mean, history really is. You know, we. We were always trying to say history is 90% of medicine. And I need to know a few facts. Like, you know, in addition to knowing, understanding about the pregnancy, the infancy, I. I kind of. I definitely want to know about a developmental regression or a history of regressions, what the triggers were, what the circumstances were. I really want to understand that because that really will inform me as to what the susceptibility might have been for that child. Now, some kids don't have regression at all, and that is really important too. Some kids have very different patterns. And then I do want to know about all the other medical symptoms. I'm not thinking of them as comorbidities, though, but I'm thinking about these symptom complexes to try to understand is there an underlying inflammatory or metabolic contributor that I need to be aware of. And then I'm really looking at the kid directly to really try to fuel, feel out what did. Like, from a neurological perspective, we localize everything. So I'm trying to feel out what is this neurological exam showing me. So if a child's not speaking, for example, there can be multiple different mechanisms that relate to that. I mean, you can have a hearing difficulty, you can have a true aphasia, trouble with language processing, trouble with producing or understanding the language. Not as many kids have aphasia, but I have a few who have a true aphasia. And then there can be initiation difficulty, there can be motor difficulty. And if there's motor difficulty, it could actually happen at multiple different levels within the nervous system. So by localizing that, I'm trying to understand those Patterns and using those patterns to kind of lead me down and, you know, put that together with the history, put that together with all the coexisting medical conditions and trying to make a story that makes sense for that child.
• 25:22
  Speaker A: What would be the best way that a parent then intakes what you're sharing and how they then approach their day to day understanding the knowledge that this is, that you're coming at this systemically and very differently. Like, what would I do? What would I do next? You know, I think that there I would hear all this from you and think, okay, we're able to look at this from so many different angles. What am I to do on a day to day to help that healing effort alongside the physician, whatever the directive is. But on the daily, like the nerve. I probably sound like a broken record on Inchstones here, but I just believe so deeply that the nervous system of the mother and caregiver is so deeply tied to that of the child. And so how do we facilitate that healing through your directives on the day to day? Because that overwhelming sense of immediacy can take over and sense of urgency very quickly if the parents don't have the same sense of the reduction of their, you know, parasympathetic nervous system?
• 26:21
  Speaker B: Yeah, I'd say, you know, in terms of how you communicate that, say to the medical community, it's a little similar to communicating with teachers. So I would say the, every parent knows this. When you met with, let's say you meet the teacher, it's October, you have that sit down, you know, in about like within a minute, you probably know, is this the right fit or not? It doesn't take long. And what you're, what you're looking to is, does that teacher see my child? Do they actually see my child? Right. And that, that's not different than what you're asking of a physician. Like, do you see my child or do you see this label? Right. And that, that's a very basic question. But if somebody can only see the label, you might need to move on. It's just a, I mean, I just put that out there because you have to always make a decision how much your time and energy is really limited as a parent.
• 27:09
  Speaker A: Very much so, yeah.
• 27:10
  Speaker B: So how much of your energy do you want to give to helping inform this person who's struggling to see beyond the label? Is this where your energy is best spent or do we just need to find somebody who sees it? And, and what I think what I would value really as a parent is I'm not Looking. I'm not looking for the department chair. I'm not looking for the person who has all kinds of awards or anything.
• 27:33
  Speaker A: Right.
• 27:33
  Speaker B: I just want somebody who sees my kid and who listens and keeps an open mind and who I can have a real discussion with. That's it. Like, it's really basic. So I just need somebody with a heart who sees the kid in front of them and, and that's what matters most. And when you do that and you keep your mind open as a clinician, what happens is the parents do teach you a lot. So we have to accept that we. There's a lot we don't know and there's a lot we can learn. And sometimes the parent is the teacher. Right. So it's a two way conversation. But if you have somebody who's kind of closed off or, you know, not connected in that way, it may not be worth your time.
• 28:07
  Speaker A: I think that's good to hear because I don't think over time that muscle stays as strong as it does in the beginning. I see that a lot of that fatigue happen. You know, the phrase I like to use is once those our kids outgrow Cute. Right. I had two little toe heads with pigtails and bright blue eyes and it's all fun and games until my fatigue over years and years and they start becoming tweens. Right. And so there's a, there's a mental fatigue there. And I think you're right that we have to, we have to be really conscious of that into where we place our energy and moving on from, from different clinicians and saying, you what? I'm gonna keep, I'm gonna keep going here to, to. To have humility from both of. Both the parent and the clinician to do what's best for the child.
• 28:48
  Speaker B: Yeah, I think that's. Well, it actually speaks to a different thing, you know, like seeing, it's. It's really. If you could find the right person having that consistency over time because, you know, you're talking about how your kids have grown and evolved over time. It's, it's really hard for, I think a clinician too, to really understand the kids when they just picked up, you know, they just pick things up at age 14 when a new problem arises.
• 29:12
  Speaker A: Right.
• 29:12
  Speaker B: They didn't really see that kid over time to see how things have evolved and changed. That really does influence a lot of our thinking. I really think that what is critical for a clinician to understand this is to manage kids over time. So we have a lot of people who are so Called experts in autism, but all they do is say developmental screening in a three year old or they sign off when the kids are 10 or 11. That's not. You're not an expert if you've done that. I hate to break it to you, but you're not expert in this. You're only expert if you've actually been primarily managing the kids over decades into adulthood and continuing through that. Because to really learn and understand this, you have to see how it evolves over that life spectrum. And, and it, and it is going to give you this journey is. It's not an easy one. There's a lot of ups and downs. You have some parents listening who have three year olds. So you could choose to turn it off now or not.
• 30:07
  Speaker A: Please stay.
• 30:09
  Speaker B: It's not all bad. And it's actually. That's the same thing neurotypically. Right. Like when I.
• 30:13
  Speaker A: Yes, it is right.
• 30:14
  Speaker B: It's the same thing. People kept telling me about adolescence and how bad it was. And I know parents, but teenagers will tell me, oh, it's gonna be awful when they're 15. Well, no, it's a journey, you know, and every stage is beautiful. But, but kids, there are some medical susceptibilities that sometimes happen in like, say, adolescence. And things can change and evolve and. But at the end of the day, absolutely, like the journey is beautiful, the kids are beautiful, but there are going to be some really rough spots that evolve. And we begin to see, when we look over a longer spectrum, we begin to see how certain things like adolescence can really derail where that kid was.
• 30:49
  Speaker A: Well, I think, you know, if you even span out a little bit from a more macro point of view and a more bird's eye view, aren't we all doing that? I mean, if we're really being conscious, I think about what you were sharing before we pressed record, just about your own history and my own history. Some of the things that I am doing right now are because of what I experienced as a child. And I don't think that we can, you know, why are we looking at this for? Okay, so only in this population are we able to. Should we be so focused on the different phases of development? No. Everyone, every single one of us has things that have informed about our bodies and our minds and our mental health and physical health, which is all health since we were little. And I. And I. So it makes me so sad that so many mothers do this so much for their children, but don't realize they can do that for themselves too. And if you can see it from both sides. I think it actually makes you feel more confident that you can get through those harder chapters because you yourself have.
• 31:45
  Speaker B: Yeah, I think, I mean, that's a really critically important thing.
• 31:47
  Speaker A: I.
• 31:48
  Speaker B: One of the sad things about having followed kids for almost 30 years, the same kids as I've seen the parents aging and it's some, you know, everybody comes to a different place on that, but some have, some have aged in, in remarkably good ways and found a lot of positivity towards what works for them. But not all have. And, and I have experienced, you know, some of those really sad situations where the parents are breaking down physically. And I could, I could say pretty confidently, I've, I've seen, I've seen people really die from autism.
• 32:25
  Speaker A: Yeah.
• 32:25
  Speaker B: And I don't want to, I don't want to, you know, I don't want to focus on that. Right. There are three year olds watching. But it might be important to hear this part too, that, you know, I have seen parents who've died from, you know, cardiac disease or cancer.
• 32:37
  Speaker A: That's right.
• 32:38
  Speaker B: And I'm really confident that decades of sleep deprivation and chronic, that chronic stress, you know, I'm really confident that that had to play a role in that.
• 32:48
  Speaker A: Absolutely.
• 32:49
  Speaker B: And, and I think what's, you know, I think there is a place to, you know, a lot of people, when do they come into this? Like, you either have sort of of a come to Jesus moment where your health breaks down to a point where you have a critical time period that you have to make a quick decision as to what you're going to do. And I would say don't wait for that, you know, because that for a lot of people that can come in their late 40s or their mid-50s or something, that there's something critical like cancer and now they've had to really reevaluate everything. Well, don't wait. Don't wait. You know, really figure out how to monitor your stress, your sleep, to figure out how to get these things right.
• 33:23
  Speaker A: It, it. I will tell you, I mean, as someone who was living, you know, the white picket fence life with a typical two and a half year old in the Upper west side in New York City, you know, socially drinker, out to the nice restaurants. I'm, I'm no longer, I don't, I don't drink alcohol. I, I have maybe a half a cup, a quarter cup of coffee in the morning. And those things are because of autism. I've made those choices because of autism and they have made me a better Human. And probably a lot earlier than I would have had I not had my younger two children. You know, I think you're right. I think this, it. It can be a way to pull back the film on some of your choices at an earlier time. And it. And it's 10 times harder because the rest of your colleagues and peers around you are not making those tough choices at this age. You know, this is the 40s are, in a lot of ways the time when I should be moving and grooving and my children should all be on the locomotive towards, you know, high school graduation. And it's also been a real time for me to evaluate my own choices and my health. And it's not been easy, but it's been very much worth it.
• 34:25
  Speaker B: Yeah, I mean, you had. Well, first you had me at white picket fence on the Upper west side, but.
• 34:30
  Speaker A: Oh, sorry. Yeah, I guess I did move to Jersey right away, so it wasn't. Yeah, it was definitely a pre war, very old building.
• 34:39
  Speaker B: It's all good. It's all good. No, I'm from Jersey, so that's great. That's beautiful. And love it. But yeah, no, I. That's really important. That's part of your journey too. So heal yourself and heal your kid. It's sort of. They're really important to go together because I think the one truism is that, you know, people often will say that, you know, no parent is any better than, like, their sickest kid or. And it's. It's true that, you know, you can never be in a good place when your kid is sick or your kid is in pain. It's impossible parent to feel right ever. And so it's gonna. It's gonna eat at all of us. And how, you know, so how do you find that balance? Because it's. It's really tough. But I do think everything we do, if we work on healing for the kid, then we can apply all those same things to the parent. Because when I. When I focus on healing, which is very different than just treating a condition, Right. If you have strep throat, give you the antibiotic, you go home, you're fine. You don't really have to work on healing. You just sort of recover. But this is different for kids who have neurodevelopmental regression. We start thinking about healing. We think about, let's get their nutrition right. You know, that's really critical. Let's get their gut microbiome fixed, let's get their sleep fixed. You know, let's find ways to lower their Fight or flight. Okay, those. Let's just take those four things. There's no reason the parent is suffering all those same four things.
• 36:01
  Speaker A: Right.
• 36:01
  Speaker B: And so, so let's fix this for the kid, but let's actually take the same opportunity and do a lot of the same things to help the parents to find the same nutrition and the exercise and the fight or flight and the gut microbiome, all this. Like, let's do all those things for everyone. But. And sleep is maybe the most important of those, really. Sleep is so critical. And that's what I worry about most in terms of, you know, parent health is decades and decades of sleep deprivation.
• 36:26
  Speaker A: Right. Well, if there's one thing that you'd like to leave my audience with right now, what would that be?
• 36:32
  Speaker B: Well, I'd say my, you know, I. I believe strongly in that maternal instinct. You know, I think that's really important to recognize that that exists for a reason. Don't everyone let anybody talk you down on that. Don't let anybody, you know, gaslight you on that. It's. It's actually going to lead you the right direction, you know, pretty much 100% of the time. So it exists for a reason. We have to really cherish it, acknowledge it, and not ignore it. And so that's something that I want to make sure that, you know, that. That it takes an experienced mom usually to be able to do this, but to when something's not right, you know, like to acknowledge, to recognize that feeling and then to change course when you feel that. Because I think sometimes a young mom feels uncomfortable doing that in the presence of a physician. But you don't. You don't have to be intimidated by that at all. Like, I really think, you know, an experienced mom who's been around the block a few times, sometimes we'll just talk down that person right then and there, you know, so think about that. If you're, if your gut is telling you something and maternal instinct's telling you something, it's sending you the right direction. Listen and follow that and, and then spend the time working to find the right person who's. Who's actually going to see your kid. I think ultimately those are going to be important things in life because it can. It can save you years and years of going down the wrong pathway or fighting the wrong battle or wasting your energy on the wrong thing.
• 37:56
  Speaker A: Yeah. Well, thank you for illuminating all of that.
• 37:58
  Speaker B: Yeah, I'll extend that real quickly. That extends to family and friends, too, a little bit, just to say, because
• 38:04
  Speaker A: you'll have it should.
• 38:06
  Speaker B: Well, because every parent's gonna have their haters, right? Like, so, you know, you have to make a decision like, who am I keeping in my life and who am I cutting out? And you only have so much energy to go around.
• 38:16
  Speaker A: Yeah. Well, that again, going back to what I said before, there are some gifts in all of this, and it, and it does shake you awake at a younger age than most of your typical colleagues and peers of typical developing children find. And to see that as an opportunity, not as a setback for your own health, will only pay dividends for your child as well. Dr. G, thank you so much for your expertise and your willingness to approach this with such rigor and like I said before, curiosity and deep humility. Because I think if there's one thing that I continue to take away from our interactions is that every autistic child deserves to be seen as a whole person, full stop. And behind every behavior, there is a brain and a gut and a body and a family searching for deep answers to the healing journey. And I hope that we just continue to ask all these hard questions and explore this individualized care. Because as someone who is living it so deeply with an 11 year old and an 8 year old and a typical developing child as well, each of them is so worthy of my ability to lead and direct and guide them into the best version of their health and who they're meant to be. Thank you for being here on Inchdence today. And I hope that anyone that's listening, this conversation has encouraged you to challenge all the assumptions, presumptions and statements that you might make internally and to give you a new question to explore with your child's care team. Because this small conversations can lead to life changing Inchstones along the way. Dr. G, thanks for being here today.
• 39:50
  Speaker B: Sure, my pleasure. Thanks.
• 39:51
  Speaker A: Until next time, here on the Inchstones podcast,