Is Your Child’s Health Struggle More Than Just a Diagnosis?

What if your child's diagnosis explains the symptoms but not the whole story? Welcome to Beyond Diagnosis. I'm Rita De Michele. If you've searched, tried, and still feel something is missing, we explore what else may be worth considering through expert conversations and real stories. Discover trusted practitioners and more support at beyonddiagnosis.app. When a child is anxious, struggling to focus, falling behind, or having emotional outbursts, Parents are often given a diagnosis and a treatment plan, but what if that's only part of the picture? Today I'm joined by Emily Roper, a neurodevelopment delay therapist, certified midwife's assistant, and founder of Early Roots, who has spent more than a decade supporting children with ADHD, autism, anxiety, dyslexia, sensory challenges, and developmental delays. Welcome, Emily. So good to have you on the show.

Thank you for having me. I'm so excited.

If I was listening to this When my son was under 12, when we were going through so much of this, you know, it would've been such a help. There wasn't this kind of information back in 2000, 2002, '03, '04, et cetera. I'm sure what you're gonna share, this other perspective, is gonna give people an aha moment. So not so they race to medication or whatever, even though sometimes it's needed. What can ADHD or anxiety diagnosis explain and what can it miss?

Yeah, so anytime you have a Developmental diagnosis like ADHD, anxiety, even things like dyslexia, learning disabilities, all of those diagnoses just mean that kids have a certain set of symptoms. It does not really give you any information about why those symptoms exist or the best ways to support those symptoms. And so I think a lot of parents go into a diagnosis hoping for answers and hoping that it'll be like, ah, it will explain what is going on with their child. And a lot of times they come away from that with more than answers because we think of a diagnosis as this really concrete thing, but really all it is is just information about what is going on internally with your child, what types of things they're struggling with. And it doesn't really give you the best direction for how to support those things or why those symptoms exist, which can really vary significantly from child to child. So things like focus and attention can be connected to so many different things, whether it's nutritional, whether it's related to sleep, breathing, early reflex development, trauma, Like being in an unstable or unsafe environment. There's so many different factors. And if you have, you know, a better look at what is contributing to symptoms, you have a better idea of how to support kids. So, and not that I'm against diagnoses, I think that they're great. And I think that it can be really helpful for families to go in and get more information. But I think a lot of them leave wishing that they knew more and had more answers and fewer questions.

I totally agree. I think Sometimes when you go in, it can feel like a relief in the beginning that you get a diagnosis. You know, your child has this, or we think that they're having that. It may feel a relief in the beginning, but then, like you say, then worry, confusion, and not knowing what to do next, I think, overtakes that. Especially— and this is where I think you talk about where the disease model is failing children most— is because they're given the next step, maybe But they're not given what lifestyle or any other approaches could possibly help. What does a developmental approach look like and how does it work differently for them?

Sure. So when I am assessing kids, for example, when they come into the office, I'm looking at a lot of different areas of brain and body function, kind of regardless of their diagnosis or even regardless of their symptoms. So I'm looking at a lot of early pieces that are developing prenatally and during early infancy, things that our brains and bodies need to function. So I'm looking at all of these skills through kind of this development lens. So if you have a child that's struggling with like emotion regulation, I look at that as a developed skill, something that we're not concerned about when you're 12 months old. You know, babies have very little emotion regulation. They cry over a lot of things. They have meltdowns. This is normal. Same thing with attention. I look at attention as a developed skill, something that we don't start out with that we develop as we get older. And so when you have older children that don't develop these things, So they're struggling with emotion regulation, they're struggling with processing sensory information, they're struggling with attention, whatever it is, then I just want to look kind of back up and look and see, do they have the tools and things that they need to develop those skills? And all of that is being built early on. Things like our stress response is being built during pregnancy. And then as you know, when babies are first born, they're really young, they're really sensitive. They have a very sensitive Stress response. And then they slowly develop the ability to not startle so easily and to process sensory information better and all of these pieces. So I'm kind of looking at all of the things that go into building these skills and looking at whether or not kids have the tools that they need to do that. So a lot of the kids that I work with still have a really super sensitive, hyperactive stress response. So they function much more like that of a newborn baby. They startle really easily. They're sensitive to sensory things. Physiologically, they have bigger reactions than older kids. And so we say, okay, well, it's no wonder that they're struggling with emotion regulation. They don't have the tools they need to regulate themselves like we would expect for that age. I look at those things regardless of diagnosis, and I'm just kind of looking at brain and body function and all of these early pieces that develop before we start to get concerned. So most of the things that I'm looking at are developing prenatally, they're developing during the first year, and then— We just kind of assume if kids reach 4, 5, 6 years old that they have these tools, and often they don't.

How much does their nervous system and that dysregulation as a nervous system contribute to inattention or hyperactivity, but also anxiety? When I was having my son assessed, he said, oh yes, I think he's got ADHD, because he pressed the spacebar on the computer 1 second earlier than where it should have been. And I said to him, well, could that not have just been anxiety to make sure he did it right? So how do we separate, you know, like we've got the early neurodevelopment, how do we separate that from possible anxiety?

Well, it's really hard because all of these things are kind of interconnected and they overlap a lot. So most of the kids that I see actually come with multiple diagnoses. They've got ADHD, they've got an anxiety component, sometimes they also are on the spectrum somewhere, or they have some sort of learning disability that comes with it. So they got kind of a mix of diagnoses, which to me, anytime I see that, is kind of like a red flag that we don't really know what's going on. I don't think of this child as having 8 separate problems. They're all kind of connected and we're just trying to find the best fit.

Mm-hmm.

For me, it doesn't matter if I look at a child and they kind of have ADHD symptoms, they have anxiety symptoms, all of the above. I don't really care. I care more about the physical development. So if I look at them and say, oh, it's really easy to test their stress response and see, oh, they've got a really sensitive startle reflex. They've got all of these like early immaturities in the way that their brain and body has developed. So we're going to focus on that because those are a lot more like the standards and the norms for those are a lot more reliable. It's really easy to check reflexes. It's really easy to check balance and coordination, that type of thing. Symptoms are a lot more subjective and a lot trickier. So when you're somebody who is giving symptom-based diagnoses, that process is hard. Like that's not an easy thing to do to really tease those things apart. It takes— there's a lot of nuance and things involved in that. And again, that's not my area of expertise. I look at more of the early physical development pieces. But the most common thing that I see in kids, regardless of their diagnosis, is that they have a really immature, hyperactive stress response. That's the most common thing that I see. And when we work on that and we start to improve that, I often see improvement in things like anxiety symptoms, ADHD symptoms, even some of the social-emotional and kind of communication symptoms that you see in autism spectrum disorder. So I work with a lot of kids on the spectrum too. And obviously those are really comp— especially some of the ones that are more severe, they're really complex and complicated kids. They've got a lot going on. A lot of them come with a really hyperactive stress response and we take care of that and it seems to free up a lot of communication pieces, a lot of makes it easier for them to connect and relate to other people. So these things like our stress response seem to be foundational in a lot of different areas of function. When our stress response is off, it seems to affect a lot of things: emotion regulation, anxiety, attention, communication, focus. All of those pieces seem to have their roots somewhere along this. Now, that doesn't mean to say that every child with a focus problem has to have this type of stress response. It's just that that can contribute in some way. If you have a a child with a diagnosis, it's worth exploring these things and kind of getting a broader picture of not just symptoms, but maybe what's going on developmentally, what's going on physically. Are there other pieces, you know, to this puzzle?

It is a puzzle. And it's kind of like trying to put those pieces together of what works. You're talking about the immature stress response. So, and how you work with— how do you work with that? How do you help the kids? What do you do specifically?

Most of the therapies that I'm doing would fall— they kind of look similar to like occupational or physical therapy. It's all a lot of hands-on physical activities. And I build in some like parent-child relationship stuff too. So basically, I teach families how to do these types of exercises with their kids. They do them at home. We kind of go back, like, I walk them through it and kind of hold their hand through some of the process.

Yes.

But it's a lot of physical things, which might sound kind of odd for families who are looking at the mental health spectrum. But especially when you're talking about early brain development, the brain and body are so completely connected. You know, early brain development can't really be separated from early physical development. So our brain and bodies really work together. And if you want to actually like change the way that the brain functions and change the way that the brain develops, you do that through movement and use and experience. That's kind of how we grow a brain.

So do you find that women who tend to have a cesarean, like I had to— and there is absolutely— I'm not shaming any woman who chooses to have a cesarean here. What I'm asking is, I was told that because I had a cesarean was more likely why my son had his neonatal reflexes hadn't matured, that they retained— he retained some of his neonatal reflexes. Can you talk to us about what neonatal reflexes are and how they influence some of the behavior that you're talking about?

Yeah, so that's a big part of what I'm looking at, are all of these earlier, call them primitive reflexes. So these are reflexes that develop prenatally, and babies keep for the first year or so after birth. And they help babies to transition from being a fetus, basically, to being a newborn. And it helps them to develop a lot of skills that they will use later. So it's helping them to develop visual skills, it's helping them to develop connections to their body. Our stress response, our startle reflex, is one of those early primitive reflexes that help with breathing and survival and attachment and all of these pieces. But these early infant reflexes, they should— they kind of serve a really important purpose during that period, and then they should disappear. And they should be replaced with more advanced, mature reflexes and more dynamic brain and body systems that support things like reading and writing and more advanced— you know, brain skills later on. But there's a lot of things that can happen both prenatally, a lot during the birth process, and then during the first year or so that disrupt that process of development. And so what you'll see is kids that keep these early infant reflexes, they don't develop the more advanced mature ones, and it negatively contributes to a lot of different other development problems with things like emotion regulation, attention, school, kind of all the things that we care about. So primitive reflexes are a big part of what I'm looking at. And when we were like researching just risk factors for how, like what things contribute to and or increase a child's risk of retaining these reflexes, one of the biggest things that they found was that birth practices influence that more than they expected. I think everybody expected pregnancy things to influence it. Obviously they expected, you know, infancy complications like not crawling or being confined to a crib or, you know, neglect, abuse, that type of thing, which they do. All of those things contribute. Mm-hmm. But people were really surprised to find that birth practices were one of the number one contributors to whether or not children would keep these retained reflex or keep these primitive reflexes or not. And then separately, actually in 2019, there was a study that came out. It found a significant correlation between cesarean delivery and ADHD diagnosis and cesarean delivery and an autism diagnosis. And I've— a lot of that actually kind of got dismissed as just correlation because obviously we can't establish a causal link there. There's not, you know, you can't say C-sections cause any of these things. It's way too much nuance there. But as soon as I read that study, it made sense to me. I was like, yes, of course, because one of the things that can happen is that it can affect these early development pieces. It can affect these reflexes. It can affect the way the sensory systems develop. Mm-hmm. And when those things don't function right, it really aggravates and increases ADHD and autism symptoms, those types of things. So again, it's not black and white. All of this is very nuanced and complex. But if you have a child that has those types of symptoms or those diagnoses, and you had birth complications like a cesarean or forceps and vacuum delivery or any of these other, you know, any trauma or things that happen during those early stages, then it's worth looking at physical development. it's worth looking at all these things and just seeing, you know, do they just have an ADHD diagnosis or do they also have these early physical delays too? The physical delays are treatable. That's something that we can really improve and get a lot better functioning. And oftentimes when you do that, you see improvement in the symptoms that parents care about the most. It's not to say that it's a cure-all for ADHD or autism. It's just one way to kind of support kids and help them function better.

So how does early development shape mental health later on? Especially if it's unchecked. All—

everything is connected. Our physical development, our mental development, all of these pieces are connected and they build on one another. And so when you look at things like complications with early development, kids that they don't— these reflexes don't integrate right, they kind of keep this heightened stress response. Let's say that goes untreated and they live with that. They're becoming teens and young adults and then or fully into adulthood, the symptoms can kind of shift and vary based on your age a little bit and how you've learned to cope and adapt. Most often what I see in the adult population, I rarely work with adults, but I do sometimes, is that it develops into things like anxiety disorders or other, you know, like versions of ADHD. ADHD in adults looks very different than ADHD in kids, which is another reason why it can be so difficult to like really accurately get a good diagnosis and understand what's going on. because these things shift as we age and our symptoms change as we get older, and these things look a little bit different. But all of the things that are happening during our early stages are kind of setting the foundation for our mental health later. Things like our stress response, how sensitive we are to our environment, how we relate and connect to other people. One of the big things that happens during our early infancy stage is our attachment to our caregiver. So ideally, when babies are born, they will develop what we call a secure attachment with typically mom and whoever their primary caregivers are, where they basically learn that the world is safe and that when I have needs or when I'm uncomfortable or in pain, that somebody will come and meet them. And from this kind of place of safety, then kids develop skills to be independent and move on and grow and do all sorts of other things. But that doesn't always happen. Some babies don't develop secure attachments. They develop more anxious or avoidant attachments. They don't kind of learn that their needs will be met. They don't learn that the world is safe. And that shapes the way that we connect and relate to people for the rest of our lives, well into adulthood. That affects relationships with family, with siblings, with our spouses in big ways. It plays a big role on our mental health and kind of how we relate to the world. There's just so many pieces that are being built early that shape us well into adulthood. And often there's just kind of a gap in understanding that what's happening early on contributes to things later.

You can see kids that don't feel safe. I don't think you have to be like highly trained to see a child that thinks it's not safe. You can tell by the behavior. Is that solely because of the nervous system and the whole birthing process, if their neonatal reflexes haven't integrated, etc.? Or is Or is it also the layer, the way the parent or the caregiver interacts with the child in those early stages?

I would warrant a guess that for most people it's a combination of many things, which is why this kind of area is so hard to like study and why we're always looking for a single cause for ADHD or autism. We're always searching for like, what is the answer? And the reality is, is there's so many complex things that go into building a healthy brain and a healthy body. But there's going to be a lot of things that, that cause it to go astray. So a lot of different risk factors, a lot of different contributors. For some kids, it's a little bit more straightforward. Some of the simpler cases, it's like, yeah, this is all they had going on. You know, they came in, they had a few of these reflexes, they had some sensory things, we worked on it, and now they're like meeting all their milestones. They're doing great. It was kind of like a fix-all. But for most kids, It's one piece to a lot more complicated puzzle, and we're always trying to find the best ways to support them. So that's a big part of my job too, is to look at these pieces and then to work with the families and each child individually and see, are there other things that we should add in to try to support them? And sometimes it's really obvious, and sometimes it's a mystery and we're just trying to figure it out. And I'm trying to be one more supportive person on the team because there's rarely easy answers.

I know you work on the physical and this may not be your area, but I was just curious, how much does very good sleep, movement, and food play in all of this?

I think it's all huge. Sleep in particular is one that I see really impact symptoms a lot. And I say that both because a lot of times when you start working on the stress response, all of a sudden kids will start sleeping better. And then typically we see this big jump in And improvement in symptoms. But the reverse can also be true. A lot of families come to me and their kids are struggling with sleep and we do stress response and reflex work and they're still struggling with sleep. And if that's the case, then I often refer— there's a breathing and sleep center near me that I really love. I'll often refer out and they'll go and get evaluated there because there can be a lot of reasons why kids aren't sleeping well. But almost always when we see improvement in sleep, we see at least some improvement in symptoms, whether that's emotional, Yeah. Whether it's emotional or attentional. Sleep is just huge. Same thing with nutritional stuff too. And again, nutrition is not my area of expertise, but a lot of times I have kids that are struggling on the nutrition front, especially if they're really picky eaters. It's hard to get them to eat enough. It's hard to get them to eat a variety of foods. If we can improve that and improve their sensitivity to food and they can start eating better, or if I send them into somebody who will do labs and nutrition stuff, a lot of times we'll see big improvement in symptoms as well. So again, those are important things, but sometimes there's challenges that come with that. You can't force somebody to sleep. You really can't force somebody to eat. Just saying like, eat better and sleep better is not always an easy answer for families.

Absolutely. I mean, it's a struggle for most adults as well, never alone a child. So what would change if we actually ask, what does this child need, instead of how do we stop this behavior? Because most people go to, I want you to stop this behavior. Well, that's It's impossible, and especially for a child, to even comprehend what that means.

Yeah, I look at behaviors probably a little differently than a lot of people, but to me, behaviors are just information. It just is telling us something about what's going on underneath, and it's really like, in general, kind of low-quality information. Like, really, you want to understand what is beneath the behavior, whether that is Are there physical delays? Whether that is their sleep or nutritional stuff, whether that's that there's like some emotional and connection and parenting piece that needs to change. There's a lot, but it is hard because behaviors are hard, especially when you've got an older child that really is in some ways kind of stuck in that terrible twos stage or that perpetual toddlerhood where they're dealing with big behaviors, big emotions. It is exhausting. And it is hard. And I understand that we really want to like stop and change the behavior as quickly as we can. But in order to really truly do that and actually get change at the behavior, we have to understand why that behavior is happening and look at that as communication or information rather than, you know, some sort of character flaw.

So tell me, an exhausted parent, how can they distinguish what is exuberant, excited, normal child behavior that maybe is a little more than what they were expecting and a child that's actually struggling developmentally?

Oh yeah, that is very hard because there's lots and lots of information online and, you know, pretty much any child now it seems like could be labeled as having a problem when they might just be a typical child. But that's very— I mean, that's very hard. The first thing I would say is if your child has a diagnosis, if they qualify for that, then we for sure know that they probably have some other things going on. It's probably worth checking out and looking at these early physical things. But it's difficult. We have high expectations for kids, especially in schools. You know, the big things that I like tell families to look out for, the big kind of red flags I would say to me, would be kids that are intelligent but really struggling to keep up with their grades at school. Where you're like, I know that this kid is smart, but they're just really like behind.

Mm-hmm.

School seems hard. They seem like they get really frustrated for things and don't kind of the tolerance, or they put in a lot of work and effort to something and yet it seems like things aren't clicking or it's not— the results don't seem to match their effort. Same thing with emotions. Some kids are very emotional, some kids are very sensitive, but what I look for in emotions is can they like experience an emotion and then calm down? Do they access coping skills? Can they begin to cope and do things on their own? support and they're struggling to kind of develop that independence. Those types of things would be red flags, like any major anxieties or fears that don't seem to be resolving as they age. Those types of things are things that I would look for. Again, it's very— I wish that I had like a really clear checklist for parents, but—

I'm sure it's incredibly difficult because the, the expression of this is huge. So it's like trying to pinpoint one thing, and that's why I guess your work has that holistic overview and you look at many parts. If a parent takes just one thing from this conversation, what should they do next?

The main thing that I want parents to get from a conversation like this is to really like not let a diagnosis be a box that kind of you put your kid in, but let it just lead you to ask more questions and want to learn more about what's going on. To look at things like breathing and sleep and early reflexes, to kind of look at all of the things that go into building a healthy brain and And just see what areas a child might be struggling in, what areas might need support, to understand that there's hope, that just because a child has a diagnosis or a lot of symptoms doesn't mean that there's not a lot of things that we can do to really support them and help them to function better.

Well, that's very empowering, and I'm sure a lot of people, or parents, or any caregiver who has a young child who's struggling, would take a lot from this conversation. Thank you so much for coming on.

Yeah.

And for everybody who's enjoyed this, please go to the show notes. Emily's details will be there. You can, you know, look her up, you know, have a conversation and, and get the help your child needs. Thank you so much.

Yeah, thank you so much for having me on.

Thank you.