How Can I Help My Child If I Don’t Have An Accurate Diagnosis?

Episode Transcript

Hi everyone, welcome to the show. I’m Dr. Nicole, and today I’m answering a question from one of you about getting an accurate diagnosis and what that really means, and if that’s even the most important thing to be focused on for your child. I know this is something that comes up for many of you whether you have a child who maybe you’re just starting to have some concerns about their development or their behavior, or you have a child who’s been struggling for a long time. This question of diagnosis and evaluation and how important that is for treatment, comes up a lot, so hoping to unpack some of that for you today.

This specific question comes from Alan and Cara, who write: “We have a seven-year-old adopted daughter who has struggled with all aspects of regulation and development since she came home with us as a young toddler. She has sensory processing issues, major eating and sleeping issues, is hyperactive and impulsive, learning issues, generally is difficult for kids and adults to get along with. Raising her has been challenging to say the least, and the ways that we have handled our other two kids just don’t seem to be very effective for her. There are lots of things we could ask questions about, but the issue we are struggling with right now is getting an accurate diagnosis for her. She’s been seen by many professionals and has had many labels given like ADHD, possible Autism, ODD, anxiety disorder, learning disorder, feeding disorder, and sensory processing disorder. We are confused about how all these labels can be accurate, and feel like the real diagnosis hasn’t been determined yet. She’s scheduled to see another clinician next month, and we hope that maybe she can give us a definitive diagnosis. We feel like until we get the right diagnosis, we can’t figure out the best way to help her. What suggestions do you have for getting an accurate diagnosis and treatment plan for a child like this?

Alan and Cara, I hear so much coming through in this question: The struggles that you have been through, all of the things that you’ve been dealing with, with this child, with your other kids, and I hear your love and commitment to really helping your daughter, which is awesome. So I know that many of you listening can relate to this: When you have a child who has significant needs, who has maybe challenges or concerns or issues that are beyond what happens with typically developing kids, it’s really challenging, and you probably feel like you’re operating without any kind of compass or map. You really love your child, you want to help them be their best. Many of you have gone down the path of pursuing all kinds of professional interventions, evaluations. It may still feel like you’re looking for answers. So I want to offer what I hope will be some helpful clarity around the question of accurate diagnosis. And my response to this is probably different than many clinical psychologists who you may ask this question, but I hope that this is helpful. I want to preface this whole thing by saying that there is actually no such thing as a “right” diagnosis. There can certainly be wrong or inaccurate diagnoses.

I see that all the time where kids are given labels or diagnoses that clearly just do not fit what’s actually going on for them. But in terms of this idea of getting “the right” diagnosis or diagnoses, or an accurate diagnosis, we really need to dig into how evaluation and diagnosis in the realm of mental health, in the realm of child development work, because in mental health, which is this whole range that we are talking about, of developmental issues, neurodevelopmental issues, behavioral issues, mental health kinds of things,  these all fall in that category of mental health. So that’s why when you have a child with these issues, you’re typically seeing people in the realm of psychology, developmental psychology, you may be seeing pediatricians, things like that, because certainly, these things are medical diagnoses as well. But what we have to understand about this whole realm of mental health diagnoses, regardless of what practitioner you’re seeing, is that they are subjective.

They are completely based on surface-level symptoms, and how a particular clinician or professional views those symptoms, understands those symptoms, based on their own clinical experience, training, all of that stuff is going to determine how they evaluate and then label these behavioral or surface-level symptoms. So it’s really important to understand that because it’s not like what we think of in the realm of medicine or medical diagnoses, where you have very clear clinical symptoms, and there are imaging studies, there are lab tests, there are things that are done to determine a definitive diagnosis, and then they are treated with specific intervention — So let’s take a broken leg as an example, if your child has a broken leg, that’s diagnosed with a combination of clinical observation, “Oh, it appears that there are symptoms indicating this leg is broken”, confirmed by imaging studies. “Oh, yep, we did an x-ray, we did a scan, yes, this bone is broken”, and then treated with a specific intervention based on that diagnosis. Same thing, we can think about a condition like diabetes as an example: it’s determined by symptoms, confirmed with blood tests or urine testing, lab testing, and then treated with specific interventions for that diagnosis. So that’s how we tend to think about diagnosis and why we assume that getting the ”right” or “accurate” diagnosis is essential for having the right treatments in place.

And it makes sense that we think that because this is the realm that most of us have experienced, it’s this more medical side of things. But when we think about the mental health or the behavioral health side of things, it’s very different. You can take 10 kids with the same symptoms, maybe they are all having inattention, they are all having hyperactivity, they are all having challenges in the classroom, they are all having social problems. So you take these 10 kids, they all have the same set of symptoms where we can go down our list of symptoms to check off, and we can say, “Oh, okay, these kids all have the same symptoms. So we are going to give them a diagnosis of ADHD. They all meet the criteria”, we can go down and tick those boxes and say, “Yup, they have these symptoms, this is ADHD.” But the challenge of that is each of those 10 kids may have very different underlying reasons, factors, contributing things that lead to that set of symptoms that then gets called ADHD.

So we need to take that into account, we also need to take into account that you could take a child with this sort of checklist of symptoms, you could take them to 10 different clinicians or practitioners, and you may get a variety of interpretations and diagnoses based on that professional’s clinical background and training, level of expertise, experience with the types of clients that they work with. So there’s so many factors that play into what label a kid ends up with. And I would argue that because of that, the actual label or diagnosis is one of the least important things when we look at what actually needs to happen for a child or a person treatment-wise.

Now, that may be really surprising to hear, you may notice that you’re having a really strong reaction to that one way or another right now. But I want you to sit with that for a minute, because you many of you have been told that the key to helping your child and the key to seeing improvement is to get to XYZ professional who can give you XYZ label and then that will lead to XYZ treatment, and then your kid will get better. And if you’re newer on the path to this, that may make sense to you. And you may be in the process of that, but there are lots of you listening who have been down this road once, twice, many times with your kid, and what I’m saying really resonates with your own experience because you’re thinking to yourself, “Yeah, we have been to see all these professionals, they’ve given us all kinds of interpretations and labels.”

In fact, more and more labels get added on over time, which is the case with Alan and Cara’s daughter in the question that they asked, and yet your child still is struggling and the treatment interventions that have been recommended as a result of those evaluations and diagnoses, maybe have not led to the type of improvement you were hoping for. So some of you really get this. And I think it’s just important, again, for you all to have information and understanding that yes, clinical diagnosis, having that label, having that diagnostic code on paperwork for your child, it can open the door to things like insurance benefits, it can open the door to getting an evaluation for special education services in school, can open the door to potentially things like community mental health resources, some of those kinds of things. So I’m not suggesting that diagnostic labels or the diagnostic process isn’t at all important. I’m not suggesting that.

There can be some really valid reasons for pursuing that. But if you’re sort of on this hamster wheel of evaluations, getting more labels and diagnoses, and then seeing what treatments are recommended as a result of those labels, and you just feel like you’re going round and round, you’re not getting anywhere, I would argue that the solution is not to continue seeking out more evaluations and labels. The problem is not that you are lacking an “accurate” diagnosis, the problem is that nobody’s really looking at what is actually going on for your child. They are looking at your child’s symptoms, the things that you’re reporting, the things that they are seeing in the office, the things that teachers reported, whatever information they have, and they are trying to match that up with this big book we have called the DSM-5 that gives us all the diagnoses that we can get, and they are trying to match up your child’s symptoms with those diagnostic labels, and when they find one that they think fits well enough, they will say, “Okay, this is what your child has.” But that doesn’t tell you anything about why your child is having those symptoms and those issues, and that is infinitely more important for figuring out what to do from a treatment standpoint.

So in my opinion, and this is 25 years now of doing this work with kids and adults, diagnosis is actually not the key to developing an appropriate treatment plan. What is necessary and appropriate for developing a treatment plan that’s going to be effective, is digging into what is actually going on. Is looking beneath the surface level symptoms and behaviors. To say, what’s actually happening here? Why is this child exhibiting the things that, for example, Alan and Cara, shared about their daughter? Why is this child having major sensory processing issues? Difficulty relating to other people? Difficulty with regulating emotions and behaviors?

Difficulty with eating? Difficulty with sleeping? Why are these things problems for this child? That’s a much better and more important question to be asking. And the answer to why a child is having these problems is never “Well, because the child has ADHD.” That’s a circular sort of argument that we get into in psychiatry and psychology or mental health, in general: “Well, the kids have these issues because they have ADHD.” Well, ADHD is just a name that we give to a bunch of symptoms. And yes, we could say, well, they have certain genetic predispositions to the symptoms. Sure. We could say, yup, there have been certain environmental triggers and things. Sure. Those things can help us understand why. But the answer is never “Well, because they have X, Y, or Z condition.” The answer is found in things like, what’s the child’s nutrient status? How’s the child sleeping? Are they getting the sleep that they need? What are the child’s relationships like? What is the match between the child’s developmental level and current brain processing capabilities in the school environment that they are in? These are the kinds of things that inform why it is that the child is struggling? And then that let us figure out: Okay, then what do we do about that? So we have to look beneath the surface.

So for these parents who asked this question, they say that their daughter has major eating and sleeping issues. So right away in my mind, before we get into an argument over whether she’s autistic, or has ADHD, or ODD, or whether she has all of them or none of them, or whatever else, whatever other label, we should stop and look deeper at those fundamental and foundational issues first, because sleep and eating impact development and behavior in every way. So if I dig into this and find out that this kiddo really isn’t eating a diet that is supplying her brain and body with what it needs to grow and develop and function properly, I don’t really care about what diagnostic label fits from a behavioral standpoint. I’m interested in understanding why this kid is struggling to eat a more very nutrient-dense diet and what we can do to start improving that, whether it is dealing with some different parenting strategies or strategies around how food and meals are handled in the home, whether it’s using some supplementation to address sub-optimal things like zinc that may be getting in the way of this child having an appetite.

Maybe they need some specific therapies to deal with oral motor skills or to deal with some of the sensory issues that they are having. It can be lots of things, but I’m interested right out of the gate in how do we get this child’s nutrient status improved, so that we can see what her brain and body can do with the building blocks that it needs. Doesn’t matter if I call her autistic or Oppositional Defiant Disorder, or ADHD or whatever, that doesn’t help anything. What helps is saying, what do we need to do to get more of the building blocks in this kid so that her brain can function more optimally? And then let’s see what we are dealing with.

Same thing with sleep. These parents are saying this is a child who has never slept well, struggled with sleep all the way along. Well, sleep is hugely important for proper brain development and proper brain function. So I am not in favor of giving any specific behaviorally-oriented diagnosis for a kid, if we are not, either before doing that, or at the same time, looking at what’s getting in the way of sleep for this kid? Why is this child not sleeping? And again, sometimes kids will come to me and they’ve been diagnosed with a sleep disorder. And I’m like, “Okay, great. What’s been done about that?” “Well, we went and saw the sleep specialist, and they told us it was a behavioral issue, and so gave us some strategies, but she’s still not sleeping.” Yup, that happens a lot. So we need to dig deeper into that. What’s getting in the way? Are there food allergies and sensitivities? Are there anxieties that need to be addressed? Are their sub optimal nutrient levels getting in the way of that? What are the issues here? Why is this child not sleeping? Let’s address that very tangibly, and practically, get this kiddo sleeping better. And then let’s see what we are dealing with from a symptom standpoint. And then we can go from there.

I’m walking you through my thought process of, based on the symptoms that a child comes in with, what’s really most important to look at? We want to look at these foundational things first and intervene in those areas, and then see how the child’s brain is functioning, see how they are developing, see how they are able to regulate, see what is happening for them, and then we can look at what makes sense to address next. To me, this is not only the best, but just the most practical way, and helpful way of addressing these kinds of challenges, and of figuring out what interventions are actually going to be helpful, and what order we need to do those in order to have meaningful change.

The other factor with this child here in the question that Alan and Cara are asking, and I don’t know the history of any of it, we just have the information from the question I read at the start of this episode, but this is a child who came into this family via adoption as a toddler. So there may be a whole lot of things that went on physically, neurologically, relationally, developmentally for this child. There certainly is trauma. The extent of that, the types of trauma, we may not have all the details about that. These parents may not. But we can certainly look at that and say, okay, trauma is playing a role in this for sure. And that also is informative in terms of understanding what types of interventions may or may not be helpful and having a clear starting point of making sure that we have got the relational pieces in place, the ability of parents and professionals, and others who are interacting with this child to have that understanding to be using supports that are appropriate, given a trauma history. And again, we don’t need any specific diagnostic label to take that into account and to say, “Okay, certain things are not going to be helpful here. Certain things are, let’s get started with those interventions and those things that are going to help.”

So my advice is to not wait around for an “accurate” diagnosis, thinking that that is going to be your key to solving the problem to getting the type of treatment that’s going to fix this. In 25 years of work with kids and families, I have just never found that to be an approach that yields great results. And what I do see is parents still have kids in their teen years and beyond on this hamster wheel of evaluations and labels, and just on and on it goes. So don’t wait around for that. Don’t think that you can’t do anything beneficial until you have some kind of label or someone definitively gives you something, because guess what? In the realm of mental health labels, you’re never going to have a definitive anything. You’re always getting somebody’s opinion on what the name is for these challenges your child is having. So instead, I would encourage you to focus your time, your energy, your money, on addressing the things that are obvious, clear issues, and matching your interventions, your treatments, your protocols, your supports, to the symptoms that your child is having, not the label, but the symptoms. If your child isn’t sleeping well, that’s a symptom that you can start to unpack and look at getting support to address. If your child’s not eating well, the same thing. If your child is struggling with frustration tolerance, if your child is struggling with hyperactivity, whatever it is, look at matching supports, interventions to symptoms, and don’t get hung up on the labels.

So I hope that this is helpful for Alan and Cara and any of the rest of you trying to understand what’s going on for your kids, wading through evaluations, labels, trying to figure all of this out. I want to encourage you to keep advocating. Keep asking good questions, keep digging until you get to the real tangible issues that need to be addressed, and 9.9 times out of 10, as parents, you know exactly what those issues are. If you would like more detailed information and support around what to dig into, how, and some avenues to look at, then you may want to check out my Digging Deeper workshop, I take you to the main areas that you need to consider when you’re trying to look at more root level causes of your child’s symptoms, so that you can know where to focus your time and your energy in terms of intervention. So you can get all the details on that workshop and my other workshops at drnicoleworkshops.com. Thank you, as always, for listening, and I’ll catch you back here next time.