Diagnosis 101: Does a Label Help or Hurt Your Child? | Dr. Rebecca Fontanetta

About this Episode

A child’s diagnosis can feel like a lifeline and a weight at the same time. When your child struggles with attention, learning, anxiety, behavior, or social connection, the question isn’t only “What is it?” It’s also “What will a diagnosis change for my child, for school, for insurance, and for how they see themselves?” On this episode of The Brainy Moms Podcast, Dr. Amy is joined by pediatric neuropsychologist Dr. Rebecca “Dr. F” Fontanetta to talk through why diagnoses like ADHD, autism spectrum disorder, dyslexia, anxiety disorders, Tourette syndrome, ARFID, and developmental coordination disorder often overlap. Dr. F explains why the DSM shifted to allow more co-occurring diagnoses, how that can improve access to the right services, and why the real value is usually the full neuropsychological evaluation report that links test data to everyday life.
We also dig into the “overpathologizing” trap, what a meaningful change from baseline looks like, and when a wait-and-see approach is reasonable versus risky. You’ll hear practical guidance for public school and homeschool families, including how IEP and 504 accommodations work, why insurance reimbursement often drives the need for formal documentation, and how to choose the right clinician for your child’s age and needs. We close with a reminder that no word on paper changes who your child is, and that understanding barriers and building support matters more than chasing the perfect label.

Subscribe for more parenting and learning science, share this conversation with a friend who’s wrestling with testing, and leave a review telling us: what’s the hardest part of deciding whether to seek a diagnosis??

About Dr. Rebecca Fontanetta

Dr. Rebecca Fontanetta is a board-certified neuropsychologist who received her doctoral degree in clinical psychology with a concentration in neuropsychology from Nova Southeastern University. With three years of hospital-based postdoctoral training in neuropsychology, Dr. F specializes in the evaluation of children with brain-based behavior and psychiatric disorders and has served as a peer reviewer for the Pediatric Neuropsychology Journal. She’s also the mother to a wonderfully silly three-year-old. She’s the founder of the Neuropsyclopedia platform and is the host of the podcast by the same name. Find her at https://www.theneuropsychlopedia.com/ and on social media @the_neuropsychlopedia

Free Downloads from our Sponsor, LearningRx

Download the free ebook, Unlock the Einstein Inside: Wake Up the Smart in Your Child
Download the Brain Training Game Pack
Link to our sponsor’s website: www.LearningRx.com

Listen or Subscribe to our Podcast

Watch this episode on YouTube

https://youtu.be/pCsvxHVMSYk

Read the transcript for this episode:

NOTE: This transcript was auto-generated by an AI assistant that thinks it’s smarter than we are. It’s not, but it has more free time than we do, so we gave it a low-stakes job. It probably spelled a few things wrong, but we’re okay with that. We’d rather spend our time interviewing cool guests!

The Diagnosis Question For Parents

Dr. Amy Moore 0:00

Hi, Smart Moms and Dads. Welcome to this episode of the Brainy Moms Podcast, brought to you today by Learning RX Brain Training Center. So today we’re going to talk about something that many parents wrestle with. Should I pursue a diagnosis for my child and what will that label really mean? On one hand, a diagnosis can open doors for services, school support, and a sense of relief that maybe it’s not that I’m a bad parent. On the other hand, labels can bring stigma, confusion, and the risk that a child starts to see themselves as broken or limited by a category that never tells the whole story. Well, my guest today spends a lot of time in that tension. And together we’re gonna explore when a diagnosis might help, when it might hurt, and how we can hold a diagnosis more lightly as we care for our kids. So today’s conversation is with pediatric neuropsychologist Dr. Rebecca Fontanetta. And let me tell you a little bit about her if you don’t know who she is yet. She goes by Dr. F. Dr. F is a board-certified neuropsychologist who received her doctoral degree in clinical psychology with a concentration in neuropsychology from Nova Southeastern University with three years of hospital-based postdoctoral training in neuropsychology. She specializes in the evaluation of children with brain-based behavior and psychiatric disorders and has served as a peer reviewer for the Pediatric Neuropsychology Journal. She’s also the mother to a wonderfully silly three-year-old. She’s the founder of the Neurocyclopedia platform and is the host of the podcast by the same name. So please help me welcome our guest today, Dr. Rebecca Fontanetta. Well, I’m super excited to have this conversation with you today. I know that when we talked a couple weeks ago and I asked, you know, what are you passionate about right now? What’s a topic that you feel is super timely, that you really want to speak to? And, you know, you mentioned that there’s a little bit of controversy and discontent uh within the psychology community about um the actual benefit of a diagnosis, particularly for kids. And so I want to talk about that because I get asked that question all the time. Does my child need a diagnosis? And my answer is always it depends. But I am not a diagnostician. I work from the intervention perspective. And so I want to talk specifically to you because you are a diagnostician. And this is the space of tension that you sit in, that you work in, that you operate in. And I’m sure that uh you have a lot to say uh on the matter. So um let’s just jump in and talk more about that. Like what does this controversy look like? What is happening?

Dr. Rebecca Fontanetta 3:12

Well, I think part of it is within, like you said, the psychology field, but then I think it also extends to related and multidisciplinary fields as well. Um, so within the field, I think you have discussions of, you know, what should the subtypes of ADHD be? Should did we do the right thing by putting all of autism’s spectrum, you know, on one spectrum and calling it one disorder versus having some kind of differentiations beyond the level one, level two, level three? More broadly, you know, should we continue to abide by this care uh categorical system, or would a dimensional approach be more efficient and more accurate? And I think when it comes to other professions, it gets very confusing when you talk about something like pandas or auditory processing disorder or sensory processing disorder, or even something like PDA, pathological demand avoidance. You know, who is to diagnose that? Is it its own disorder? Is it a subtype? Does it only apply to autism? Does it apply to several disorders? There’s all these questions, but ultimately everything really comes down to insurance because that’s most of the time who we’re billing, um, whether we take insurance or not, even if it’s on, you know, an out-of-network basis. So I think part of it is how do we characterize for research purposes to ensure that we’re providing appropriate treatment and intervention? How do we diagnose so that the families can receive proper reimbursement and the proper services that their children should be entitled to? And what do we feel is ethically and morally appropriate?

Dr. Amy Moore 5:00

So, do you think that kind of zeroing in on that last comment that you made, right? Like what’s ethical, what’s moral about the diagnostic process? What has happened that has created this conversation? Like, why is it, why is it coming up? What are you seeing? Um, has there been an impact on families in such a way that you’ve seen these patterns and it’s shouting big big red flags? Hey, I think we need to be doing something differently.

Validation Vs Overwhelm For Families

Dr. Rebecca Fontanetta 5:33

I think, you know, it’s it’s different for for parents and children and and young adults because most pediatric neuropsychologists, as you know, see through young adulthood. I think so we can start there. Young adulthood, I think for those people, usually they’re looking for clarification, validation, and appropriate treatment. Um, so many of those people feel like I’m having a difficulty and I want some help, especially, you know, those who feel like when I was a child, um we didn’t have access to or, you know, mental health service services weren’t as valued. So they’re feeling like I’ve been struggling unnecessarily for a long time. I want a diagnosis that can characterize these struggles that I’ve been dealing with or masking, you know, my whole life. I want medication maybe for ADHD. I want to have some therapy that will help me hone some of my social capabilities or validate my emotional experiences. Um, you know, if it’s something like autism or, you know, chronic anxiety or chronic PTSD. So I think that’s, you know, the perspective for many people. And I always defer to the client and I understand, you know, how valuable that can be. Um, on the other hand, with families, I think parents can often get hung up on or overwhelmed by diagnoses, especially when the DSM kind of changes the rules surrounding how we diagnose. So for example, autism spectrum disorder used to be something that um was divided, but even so, let’s say we gave a child a diagnosis of Asperger’s, we weren’t able um, you know, like 10 years ago or so, 15 years ago, to diagnose Asperger’s and, you know, a language disorder and um ADHD and, you know, something like RFID that, you know, really didn’t even get any attention at that point. So all of the struggles the child was having was encompassed by this one label, which on the one hand is less maybe scary and overwhelming for parents to accept and digest, but on the other hand, leaves the child vulnerable for not having all of the actual skill sets addressed. So if they have fine motor weaknesses, you know, they benefit now from a diagnosis of developmental coordination disorder, or sometimes referred to as dyspraxia. If they have, you know, difficulty with eating certain foods that goes beyond pickiness that really can affect their health and well-being, you know, RFID is an important diagnosis that will require, you know, sometimes school-based and or home-based feeding services or or clinical exposure work. If there is ADHD, some people with autism, for example, will benefit from standard ADHD medications or stimulants, while others will not. Um, if there are learning disorders, those need to be addressed independently. Whereas in the past, if you had someone who, for example, had Asperger’s disorder and also dyslexia, the dyslexia wouldn’t necessarily be addressed. Everything was in the context of the Asperger’s, and so they wouldn’t receive the appropriate language and or reading intervention. So they serve a purpose. Um, but I think that sometimes we hang our hats so much on these labels, and sometimes they become part of our identity, especially if you’re a young child and you’re kind of being told, you know, um, well, this is because you have ADHD. So on the one hand, they either feel shame about it, on the other hand, they might um, you know, feel like it’s an excuse. Oh, well, I don’t have to do that, or I don’t have to perform to expectations because I have ADHD. On the other hand, as an adult, um, when you’re transitioning to college or employment, that label might be crucial to understanding, you know, how you can be successful and have appropriate accommodations in college or in the workplace. Um, so I think for every situation, there’s potential pros and cons. I think it comes down to how is the diagnosis going to benefit the client andor the family? And is it appropriate given, you know, the particular profile that the client presents with.

Dr. Amy Moore 10:29

So do you see that some families become overwhelmed with this idea of separating the different diagnoses? Right? For example, I mean, I can give you a personal story. Um, I knew my oldest child had ADHD. That’s my area of expertise. And so, but I took him for three days worth of testing and diagnostics when he was seven years old, only to find out that not only did he have ADHD, but he had Tourette syndrome and generalized anxiety disorder and just a list. And so I can remember, and this has been right over 20 years ago, um, I can remember sitting stunned, stunned in the clinician’s office, that I was just expecting an official ADHD diagnosis, and I walked out with multiple diagnoses and a treatment plan that was 32 pages long. Now, to me, that was empowering as well as overwhelming, but I can imagine that it can be uh it’s Occam’s razor, right? People want the the simplest explanation for what the struggle is. And then to walk away with multiple explanations has to be overwhelming and paralyzing for many families.

Dr. Rebecca Fontanetta 11:51

I’m sure it is. And you know, I think as neuropsychologists, we certainly do our best. That’s what the feedback session is for, right? So we’re really trying to explain the child as a whole, explain not only the list of diagnoses or labels, but the interaction between them. Because how often do you have ADHD without anxiety, right? You know, how often do you have ticks or Tourette’s as a sole condition? It’s unusual for that to be the case. And so I usually explain to parents, um, and they, you know, I think most parents now kind of understand how the system works, especially within education. And I say, listen, you’re gonna see a number of diagnoses here. We’re gonna talk about each one individually, but I want you to understand that some of these are literally just characterizing, you know, a particular behavior that your child engages in currently. For example, let’s say a chronic tick or skin picking, for example. Those now would have their own diagnoses, and it sounds, you know, you have one individual diagnosis that you would think they all carry the same weight. But something like autism spectrum disorder, which is a lifelong neurodevelopmental disorder, does not necessarily carry the same weight as a skin picking disorder, which can be a temporary um, you know, behavior that is the way that the body um reacts to a stimulation need or a sensory need, right? So you see, like you said, maybe 11, 12 diagnoses on the page, and you’re like, oh my God, my kid has all these problems. Something is really wrong. But really, the clinician is just trying to characterize all the areas of potential need so that they can all be addressed appropriately, because what we’ve learned in recent years is we need very individualized, unique interventions for each you know, struggle or challenge that the child has. Now, at the same time, there might be some things like executive functioning training or the cognitive training that you know you do that may work on more than one diagnosis, for example, ADHD, anxiety, um, or even, you know, a motor tick disorder potentially, or, you know, a developmental coordination disorder. So it doesn’t mean that, you know, these different interventions can’t tackle more than one weakness, but it just lays it out, especially when you’re dealing either with a school or in a public school, I should say, or insurance, where you really need to spell it out very explicitly and very, you know, detailed so that the child’s specific needs can be met in terms of goals and a treatment plan for each area of need.

Dr. Amy Moore 14:54

So for our listeners who might not understand those two issues, what I’m hearing you say is if a child is going to qualify for services through an IEP or 504 floor plan accommodations at a traditional school, they will need a formal diagnosis. Right. And if a family wants to use their insurance to cover an intervention, they will need an official diagnosis. Is that what you’re saying?

Dr. Rebecca Fontanetta 15:23

Exactly. So in certain states, for example, in order to have something like ABA, applied behavior analysis, or speech therapy or occupational therapy covered, um, there’s specific, for example, autism laws that allow these things to be covered through Medicaid or through special waivers, but you have to have that specific diagnosis. If you don’t have that diagnosis, the services will not be covered. And on the other hand, like you mentioned in IEP, so an individualized education program, if you have a child who has social difficulties, but also difficulties paying attention, but also has anxiety and also has reading comprehension weaknesses. If you just put autism spectrum disorder on there, first of all, you might not have the correct classification on the IEP, and you might only receive services for the autism, which maybe you would get some group counseling services, for example, and maybe some classroom accommodations, but not necessarily occupational therapy or um parent training at home or speech therapy or reading um or speech language uh intervention services. So that is why it’s important, and that’s why the people behind the DSM made the changes to allow for all these different diagnoses to be placed concurrently so that the child can receive every service they need and not just be conceptualized by their one, you know, prominent diagnosis.

Dr. Amy Moore 17:08

Well, I love that you point that out. That that was very intentional in the creation of the latest iteration of the DSM because we frequently hear that that was driven by big pharma, right? That if you look at um, if you look at the DSM, we could classify 60% of Americans with a mental health disorder, right? Because it was paid for by the pharmaceutical industry. But I’m hearing you say that it’s more nuanced than that.

Dr. Rebecca Fontanetta 17:38

And I think it depends. And, you know, there’s a lot of opinions about the DSM. Um, and I do think, you know, it’s well connected to the medical model because it also largely follows the ICD now 11. Um, but I think that there was a recognition that um children’s needs were not being met comprehensively. Um, you know, but at the same time, we have to be really careful about over pathologizing. And we have to also recognize there’s not necessarily a cure or fix for everything. Um so it’s really important to, you know, how the parents digest the information given to them. It’s important that they have the appropriate expectations, whether it be limited or high for their child in different domains. So it’s more important, really, that parents understand their child in terms of the whole profile, the whole interaction of their strengths and weaknesses, as opposed to any singular diagnosis. And as we’ve all heard a hundred times over, one child with autism is one child with autism. So, really, even having that diagnosis is not tremendously helpful anymore because it’s such a large spectrum. So, unless you have a neuropsychologist who does, you know, a very um thorough job of explaining your child, that doesn’t really tell you what interventions your child needs. It doesn’t tell you the placement they need, doesn’t tell you the type of school, it doesn’t tell you the accommodations, it doesn’t tell you what to expect as far as their learning, it doesn’t tell you, you know, how restrictive of an environment they might need, or um, you know, what their IQ might look like, or how they how independent they are physically. So it’s really important to have this additional information beyond a singular diagnosis to really know how do I best support my child or myself.

When Concerns Become Clinical

Sandy Zamalis 19:45

And now a word from our sponsor, Learning RX. In middle school, Kevin had given up on learning because of his reading struggles. His parents had tried everything and they were losing hope until they enrolled him in the cognitive training and reading programs at Learning RX. It was hard, but he gained confidence as he strengthened his memory, attention, processing speed, visualization, reasoning, and auditory processing skills. Years later, his mother wrote to us that Kevin has graduated from college and is beginning his master’s degree. He’s a military officer and is married with his own children. He’s thriving in life, in learning, and in his career. We can’t promise your child will have the same results as Kevin, but we love to talk to you about our brain training programs. If your child is struggling with reading or learning, talk to the team at Learning RX to see if we might be the right fit for your child. Visit Learningrx.com slash the brainy moms to learn more and receive a cognitive skills assessment with a consultation for just ninety-nine dollars. That’s LearningRx.com slash the Brainy Moms.

Dr. Amy Moore 20:53

Aaron Powell You said something a minute ago that we have to be really careful not to over pathologize. And I think that as Americans, we have a tendency to attach pathology to the extreme ends of normal behaviors, right? That and I think I think it’s on one hand, because we want an explanation, we want to be able to say, well, that’s why we’re seeing this. Exactly. But we also are then ignoring the fact that there is a range of normal. And so how do we how do how does a parent who is concerned about some behaviors that they’re seeing or some struggle that they’re seeing? How does a parent know whether, okay, I need to start looking at whether or not my child needs a formal diagnostic process? Or is this just an adjustment issue? Is this just a reaction to current situations or their environment, or maybe some trauma that we already know has Has occurred, right? They were exposed to some violence. Or we, you know, this is a a child who was experiencing poverty and has now, you know, uh been adopted. And so how how does a parent know um what to do?

Giftedness And Twice Exceptional Needs

Dr. Rebecca Fontanetta 22:16

I think that’s tough because of the individuality of the child. I say that because I’ve had many children, you’ve probably experienced this to some extent, where the children are almost begging for a diagnosis. They want some validation. They want people to understand that things are outside of their control that others may feel are within their control. So I think what you said earlier, you know, they we always want an explanation. We want justification in, you know, why we act a certain way or why we might make certain, you know, mistakes, so to speak. But at the same time, you have something like you said, you know, anxiety or reaction to, you know, a tough situation or a trauma. Anxiety is necessary for survival. Anxiety is adaptive, you know, so it’s not inherently a problem to be anxious. When you are thinking of it in a clinical sense, you’re saying there is a significant change from baseline functioning, meaning how the child was before. Um they, you know, they were really social before and now they refuse to talk to anyone. They used to love school and now they refuse to go to school. Um, you know, they used to eat three meals regularly and now it’s a fight to get one meal in. So if you’re seeing these really significant changes as a result of the anxiety that is affecting their, you know, physical and mental health, then I think you have a cause for concern. If your child comes home and says, you know, so-and-so wasn’t being nice to me, I got in a fight with my friend, or, you know, I’m worried about a test I have this week. I mean, those are more ambiguous because those are all things that almost any child is going to go through. And it’s not necessarily problematic to have anxiety about those situations. Um, so you really have to try to judge, you know, whether there’s a significant change and how much it is really affecting their day-to-day functioning as compared to a time prior, as a compared to, you know, most of their life, which is hard to do in a child. And it’s not always that clear-cut, especially, you know, because a lot of children experience anxiety in the form of headaches, stomach aches, um, you know, aggression, different different kinds of behaviors. On the other hand, though, the counter to the over-pathologizing issue is not so much under-pathologizing, but only pathologizing things that are seen socially as a problem. For example, giftedness. My soapbox has always been giftedness is just as much of a disorder, although I don’t, I wouldn’t necessarily label it that way, but is as much as an aberration from the mean as many other things that we label disorders. And gifted children, and especially, of course, twice exceptional children, they require special supports and have needs that are very different from your typically presenting child. So finding that balance between saying there’s something that is different here. The child has needs that go above and beyond, you know, what would normally be provided, or that a parent would feel competent to support or solve on their own is important to highlight, is is certainly, you know, there’s never a point where there’s too much concern, you know, unless you’re getting to the point where you’re doctor shopping and you’re insistent that there’s a problem where there’s not. But, you know, I don’t think parents should ever feel silly to raise a concern with a therapist or, you know, a teacher or um another clinician. But you have to think of it in is this really disrupting my child’s life? Do they have significant needs that are not being met, you know, in their day-to-day life?

Dr. Amy Moore 26:26

So we have to be careful not just to over-pathologize, but to not be under-responsive as well. And so you bring up a really good point, and this is not something that um I think we’ve even talked about on the show before, is that um, you know, we typically think of giftedness as yes, we need to adjust the curriculum or we need to adjust their placement to make sure that they’re challenged enough. But what I’m hearing you say is, you know, that’s a departure from neurotypical needs, just like a learning disability would be. They just have different needs that we need to address. And that if we don’t respond to that in some way, then what happens? What happens if we don’t respond to the needs of a gifted child?

Dr. Rebecca Fontanetta 27:20

And with the research, the most often concern with someone who’s gifted is that they have social emotional difficulties, um, that they feel that they have to be perfect, that they’re not allowed to fail, that they everyone has high expectations for them, that they are very bright, but they can have executive dysfunction. And so they don’t or others don’t understand when they make, you know, seemingly stupid mistakes because they’re assumed to, you know, be good at everything and they’re too smart to do something like that. Um, or they just have so much anxiety, they’re so hyper-aware of how the world works and how people work, um, and they’re not always on the same wavelength as other people, so they feel lonely or disconnected. And so, you know, to what we were kind of talking about earlier, these diagnoses, certain diagnoses travel together. So that’s really what’s more important to look at is what do these diagnoses, you know, packages kind of look like? What are the most common Venn diagrams? You know, thinking of any singular diagnosis is unusual. It’s unusual for a child to have one diagnosis. It happens, um, but it’s unusual because if you have one area of need, you’re likely to have co-occurring areas of need. If you have one area of strength, you’re likely to have co-occurring areas of weakness and strength. Um, it just, you know, and medically too. If you have a particular um psychiatric struggle, you’re more likely to have co-occurring medical um, you know, abnormalities, whether that’s somatization, whether that’s a dysautonomia, whether that’s, you know, a more specific neurological um, you know, condition or or struggle. So I I think that’s why we’re leaning very much towards the dimensional model is to kind of connect all these things. It’s not like when you get a cold and you have the rhinovirus and that’s the only thing that’s affecting you at that at that time. That being said, many people, when they get an illness, especially a more, you know, something where they have a fever and whatnot, you end up feeling anxious. You end up feeling out of it, you end up feeling fatigued, you um end up struggling to concentrate, right? So when when part of you, whether physically or mentally, is affected, there’s other things that go along with that. That’s just the mind-body-spirit interaction.

Dr. Amy Moore 30:03

Absolutely. So is there an a situation where there would be um a a disadvantage to seeking a diagnosis? Great question.

Dr. Rebecca Fontanetta 30:18

I think if if the if the diagnosis was uh inappropriate for that person, you know, and they’re getting the wrong information and they’re and then they receive the wrong treatment or intervention, I think that’s one example. I think if the diagnosis serves to enable either the child or the parents or both, rather than support, that could be something to be weary about.

Dr. Amy Moore 30:49

Um and what would be an example of that?

Dr. Rebecca Fontanetta 30:53

Sure. I think you know, if let’s say you have a child who’s six and is going off to kindergarten and the child is struggling, you know, to adapt to that transition of being out of the house for longer and being in a new school on a school bus, and the child is diagnosed with separation anxiety. Those are the situations you have to be careful because separation anxiety in that situation is normal and appropriate. Can it get to the point of being clinical? Of course. But then if the parent says, Oh, well, you know, my child needs to be in a specific class, or I need to drive my child to school every day, or my child, you know, can’t eat lunch at school because they’re too anxious, or whatever it might be, you start making all these accommodations and modifications for the child because they’re sick, right? Or they have a mental illness. Um, and you kind of feed too much into that identity and you think of it as something that’s permanent rather than temporary, I think that can be a little bit dangerous and be an unintentional self-fulfilling prophecy.

Homeschooling And The Power Of Profiles

Dr. Amy Moore 32:05

Absolutely. Okay, so I interrupted you. Um we were saying, you know, would there be a time where we would not want a diagnosis or would there be a disadvantage? And so um, so if if it creates an enabling um scenario like you just mentioned, if you get inaccurate information um about it, um let’s say, so I work with a lot of homeschooling families. So um a very common question is well, my child is not in a public school setting. So I’m already individualizing instruction and curriculum for my child. Um so what would the benefit of having a diagnosis be for my child? And I did hear you say at the top of the conversation, um, you know, when you make that transition to college or the workplace, you will need a formal diagnosis for at that point um ADA accommodations rather than um idea accommodations or uh school-based. But is there another advantage to going ahead and seeking a diagnosis early?

Dr. Rebecca Fontanetta 33:17

Yeah, I mean, I think it depends. Um, I mean, some parents are just so intuitive and they just understand, you know, where their child’s weaknesses are and they figure out a way to teach them in a way that works for them. And they just, you know, they kind of do the interventions themselves just by kind of trial and error. But I think, you know, let’s say a child has dyslexia, for example, the parent may inherently know that, but may not know the best program for their child’s specific dyslexia, let’s say. So when you have dyslexia, you can have a few different things going on. You can have a visual perceptual issue where you um reverse numbers and letters and you write them backwards, or you have trouble differentiating P, B, D, and Q. Um, you can have a phonological issue where you have difficulty associating the sounds to the letters or breaking down the word into sounds. You could have a rapid naming issue where you have difficulty identifying the letters quickly or have an underlying language issue. So the reason the diagnosis is helpful is not always just the diagnosis itself, but understanding the type of diagnosis or type of dyslexia and where the weaknesses are and aren’t, so you can pick the most appropriate homeschooling program, for example, to meet your child’s needs.

Dr. Amy Moore 34:46

Okay, I like that because it isn’t just about a label. It’s about the 32-page report that actually shows all of the individual uh skill deficits and skill strengths and recommendations for how to meet the um needs or remediate those uh deficits, right? So it it gives you more than just a label.

Dr. Rebecca Fontanetta 35:12

Exactly.

Dr. Amy Moore 35:13

To go through the diagnostic process.

Dr. Rebecca Fontanetta 35:15

I mean, at the same time, you know, it’s and I’ll I’ll be candid. This is something I’ve struggled with over the years because we’re taught to write these very medically based, scientifically based reports, right? But at the end of the day, most of the time these reports are for the families. And I’ve struggled to write reports at times that were consumable by the layperson. And, you know, you want to describe things very technically, and you know, it can help if other people are involved in the child’s education and care. But the parents are the ones like who’s gonna read through this 32-page report, right? Probably the parents that are most invested. So we need to make it digestible for them, and we really need to like spell out very clearly what they can do to support their child. Um, and, you know, explain some things they already know, you know, kind of pull it all together and say very succinctly and plainly, you know, this is where your child is struggling, this is why we think the child might be struggling in those areas, and here’s what you can do about it.

Dr. Amy Moore 36:28

When a parent asks, where should I start? Um my recommendation is that if you need a referral because of the way your insurance works, then you need to start with your child’s pediatrician, but don’t stop there.

Dr. Rebecca Fontanetta 36:42

Right.

Dr. Amy Moore 36:42

Um, I get super frustrated when a parent goes to the pediatrician and says, I think my child has ADHD. The pediatrician runs a really quick checklist and says, Yep, looks like ADHD, here’s your Ritalin. When that needs to be a, yes, I can see your concern. Let me refer you to a clinical neuropsychologist or a clinical child psychologist. Talk a little bit about the most appropriate type of clinician that parents would want to see when they’re looking for a diagnostic assessment.

Dr. Rebecca Fontanetta 37:17

So I would say it depends on the child’s age because I’ve had more and more people, now that there’s so much information out there, which is a great thing, I’ve had more and more families reaching out to me when the kids are like three or four. And really, it’s not the best time for a neuropsychological evaluation. It’s possible to be done, especially if it’s um, you know, like a developmental delay and just kind of saying whether there’s a delay or not, we can do that certainly. But sometimes the best place to start is with a developmental pediatrician. And so that would be someone who can do some of these more objective tests, but really understands and combines kind of like the neurological with the psychiatric with the general pediatric um practice. Um, so that can be a good place. And if you’re concerned early on, going through early vent early intervention, um, which is available across the country, is also a really good place to start if the child is young. Um child find. Yeah. Um, but even yeah, so this would be from birth through age three. So this would be provided by like the local county, and then the school district would pick up responsibility at age three through CPSC until they start kindergarten, you know, usually around age five. Um so there’s there’s different directions you can go, but I think a lot of people do jump to a neuropsych these days. Um, but I would caution people to wait a little bit and see what other resources and evaluations are available because you don’t want to go too soon because you might not get the accurate information. And again, we don’t want to overpathologize and you know, especially when you’re concerned about learning, the children are only supposed to be able to do a few things by the time that they’re in preschool or kindergarten. So whether they have one skill versus another, we don’t want to put too much weight into that. Some children are able to write their names at three and some don’t write them till seven. You know, that’s just one particular skill. And a lot of that has to do with exposure. So um we don’t want to see them too young because we don’t want to say something’s a problem where we really don’t know, where you don’t have a lot to compare it to yet. So I think developmental pediatrician, um, pediatric neurologist, if there seems to be something neurological going on and there’s other, you know, um physical or medical discrepancies or abnormalities that you feel like you might be observing. Um if the child is struggling to regulate their behavior, working with a therapist might be the first way to go. Um, but you really want someone who’s working with you as parents, not someone who’s just sitting and playing, you know, Candy Lamb with the child. As much as that can be beneficial to build rapport and to develop certain skills, you want to make sure you’re very involved as well and not just sending the child somewhere to get, you know, therapy independently.

Dr. Amy Moore 40:26

Okay, so then what would be a red flag or some red flags in early childhood where you don’t want to have a wait and see approach where you’re saying, okay, I really think my child needs to be assessed.

Dr. Rebecca Fontanetta 40:42

Um, so I think from a neuropsych perspective, um, you know, I won’t speak to medically because that’s a little outside my domain, but I would say if you feel like the child is really struggling to communicate their needs, and that doesn’t mean necessarily talking. That could mean that they’re not looking at you when they need something, they’re not, you know, verbalizing any kind of sound, they’re not kind of waving to get your attention, um, something where you feel like, you know, their well-being is at stake, or they’re there’s some kind of delay in them, you know, uh being able to get what they need or express themselves or progress in their learning, even their very early learning of just how the world works, I think that would be reasonable to, you know, bring up to whatever clinician you’re you’re seeing or your pediatrician, like you said. Um most things related to milestones, unless they’re really notably delayed, like, you know, your child’s two and a half and they’re not walking. Um, you know, they’re they’re two and they haven’t said a single word yet. Um, you know, um, trying to think of some other good examples. Um maybe they’re three years old and they, you know, still can’t use a utensil in any way, um, or they have trouble sipping from a straw, or they’re incredibly anxious anytime you go out in public and they, you know, have a meltdown, so to speak, or a sensory reaction. Um, I think those are worth investigating. But it’s important to also say that some kids who end up being largely neurotypical walk and talk later for reasons that we don’t fully understand. Um, you know, have something going on medically or have fluid in their ears or something else that we come to learn later that explains their, you know, different behavior. So we want to be careful and we don’t want to assume anything is absolutely a red flag, but we also want to, you know, have that parent, you know, what’s often referred to as that mama bear gut feeling, but could be papa bear as well, um, that just says, this just doesn’t seem right, and I don’t feel like I’m getting that response from my child that I would expect.

Why Labels Differ Across Clinicians

Dr. Amy Moore 43:21

Yeah, I mean, nobody knows your child as well as you do normally. Absolutely. Um, you spend the most time with your child, uh especially in early childhood. And so you are going to be able to pick up on those patterns that, you know, a quick assessment might not um necessarily be able to. So I think that would be okay for you to keep seeking that. Yeah. Um, so talk, talk to me a little bit about the validity of the current labels, right? That the diagnostic labels. What are your thoughts on that? Do you feel like um, you know, the diagnostic criteria? For most childhood disorders, is accurate right now? Do we need to be making changes?

Dr. Rebecca Fontanetta 44:06

I think we absolutely need to be making changes. If you look at the research, the validity and reliability rates amongst clinicians, even of the same profession, is not where you would expect them to be. Meaning you can take your child to four different neuropsychologists, and you might end up with some similar disorder, some similar labels, and then, you know, also some different. One might say it’s ADHD and dyslexia. One might say it’s anxiety and ADHD. One might say it’s dyslexia and a language disorder. I don’t think that’s terribly common, especially for things that are more objectively measured, like learning in language. But, you know, especially for something like autism spectrum, especially when the child’s older, whether or not anxiety is clinical, whether or not it you have something like bipolar, or you just have someone who’s has mood lability for another reason, um, or it’s more of a personality development, I think there is more variability and less um confidence amongst professionals than we would like. Um so I think again, when you break it down to those individual skills, if you were to look at those same, you know, four neuropsychologists and say, What did you observe? And all four of them would say the person was inattentive, the person was impulsive, the person was easily frustrated, the person had trouble expressing themselves. I would imagine there would be more agreement on those individual skills rather than the labels themselves.

Dr. Amy Moore 45:50

So then what what does that mean then in terms of treatment and intervention?

Dr. Rebecca Fontanetta 45:57

It means that, you know, the the way that we diagnose needs to improve in in the agreement. But us as clinicians, we have less control over that. We can give our feedback openly, and I think, you know, plenty of us do. Um, but I think as from a clinician standpoint, we can write the best treatment summaries, neuropsychological, psych psychoeducational reports that we can write that are as individualized as possible, and that we’re really making sure that our recommendations reflect the individual needs of the children that we see, and that we do our best to convey that message and keep open lines of communication with the families that we see. Because, as you well know, it’s very overwhelming when you get that information and there’s a million thoughts going through your head, and then you have this long report and you’re kind of like, okay, what is going on with my child? And you just refer back to these diagnoses, and you might just, you know, type in ADHD or dyslexia into Dr. Google, and you might get information that isn’t does not pertain to your child. So I would encourage parents if they have a neuropsych or any kind of psychological or educational testing, bring something with you to record, write things down, don’t be afraid to ask questions, um, ask follow-up questions, um, you know, continuing to do your own research. And that’s kind of what I’ve tried to create with my platform now is okay, so my child has a diagnosis, but I want to learn everything I can about it. So now I can look at, you know, books for parents. I can look at um research articles pertaining to that particular disorder or disorders. I can look for children’s books so I can explain it to my child in a developmentally appropriate way. I can look for camps or other programs that my child can attend so they can be with other people who will understand them best and will continue to work on things during the summer in a fun and supportive way. Um, I can talk to other parents who’ve gone through this, and so they can save me the hassle of having to start from square one. That’s really what I want to do for families.

Dr. Amy Moore 48:21

And then also what I’m hearing you say is that each child is individual. And so it’s really important to look at what are the individual needs and deficits and struggles rather than just looking at the label, because then you want to choose your intervention based on what your child actually needs, not necessarily, hey, the most common intervention or treatment for ADHD is a stimulant medication. When we know that while stimulant medications might help with hyperactivity and inattention in young children, it isn’t necessarily gonna work on emotion regulation or a working memory deficit or some of the other struggles that we that we might be noticing that actually might be impacting learning and day-to-day functioning more than just the label itself, right? Right.

Dr. Rebecca Fontanetta 49:22

And getting an accurate history because that same child might be um, you know, in the lower percentile for height or weight, right? Or they might have a heart condition, or they might have co-occurring anxiety. So all these things that would um, you know, be counterproductive to introducing a stimulant. So you have to really have all this information. Part of why our reports are so long is because all of this is relevant to treatment. You need to know all these things so you know that you’re doing the right and safe thing for your child.

Dr. Amy Moore 49:56

So it seems like that 32-page report is so important to review and understand as a parent that you want to be able to look at it and ask questions and ask the clinician who did the diagnostic assessment to help you attach what they saw to what you’re seeing day to day as well, right? Like if you noticed slow processing speed on a test, on an assessment, how does that translate to what the parent is seeing day to day? Right. Is this a teenager who has had three car accidents already? Right, right. That could be because of their processing speed and their reaction time, right? And so you want to be able to you want the clinician to be able to help you make those connections so that you can best help your child.

Dr. Rebecca Fontanetta 50:59

Exactly.

Avoiding Google Spirals And Getting Opinions

Dr. Amy Moore 51:02

Um so is there an inappropriate first step that you would want to warn parents against?

Dr. Rebecca Fontanetta 51:13

That’s a good question. I guess going on the internet too soon is probably the biggest one. Um, because A, it can make you spiral, and I definitely know that. Um there’s so much information out there, and it can be very confusing and very nuanced, and very particular to the type of professional that is, you know, explaining a certain topic. Um so I would steer away, unless you’re, you know, in the field, um I would steer away from doing too much research on your own. Um, I encourage you to do some, and especially, you know, if it’s objective and vetted information, but you definitely want to make sure you’re consulting with a number of clinicians and that you’re getting some kind of agreement across clinicians so that you feel more confident in the results. Um, so I think that would be a big one is just, you know, try not to do too much um figuring out all on your own. Um go to your village, talk to other parents, talk to your school’s SEPTA or SEPTO, um, see what their experiences have been. Um, those are the special education PTA committees. Those can be really supportive and helpful. Um, so I would information gather, but not all in one place. Um, and then kind of decide who are the most trusted and vetted sources that you want to kind of prioritize, you know, their advice. And also, you know, not really something not to do, but um don’t be afraid to get more than one opinion. I say this to parents all the time, you know, I will not be offended if you feel like you want to get another neuropsychologist or psychologist’s opinion to feel sure. Um, you know, usually I tell them I feel pretty confident about my results and here’s why. But just on an emotional level, you know, I understand that parents want to feel like, you know, there’s some agreement, or, you know, sometimes it’s just hard to process um the results of an evaluation or particular diagnosis. And sometimes you need to hear it more than once. Absolutely.

Dr. Amy Moore 53:42

What is the best way to communicate with a clinician about your concerns? Are there do’s and don’ts in order to make that a collaborative effort, one that is not adversarial? Like what from your perspective immediately puts a wall up in between you and the parent?

Dr. Rebecca Fontanetta 54:07

Um I would say there’s not a ton of that, honestly. I think that, because I always tell parents the more information, the better. Send me videos, send me writing samples, send me old report cards, send me medical records, you know, write me an email of everything you’ve observed this week. So I think as clinicians, we need to be open to different um kinds of information. But I think if a parent comes in and they already have a diagnosis in their head or they’ve already kind of decided what they think their child is struggling with or not, um then you have to be careful because they might not be um 100% receptive to the results of the evaluation. Um So I think I think both parties just have to be flexible and have an open mind. And it usually goes pretty well.

Dr. Amy Moore 55:04

And if you as a parent seek out a clinician who isn’t receptive to your input, should you just keep looking then for a different one? I mean, is it possible that there are clinicians out there that are not the right fit?

Dr. Rebecca Fontanetta 55:20

Of course. And that doesn’t necessarily mean that, you know, there’s anything wrong with them or they’re not well qualified. Sometimes fit is just that. It’s just fit. Some people need, you know, more um assertive go-getter type clinicians. And some families want someone who is gonna calm them down and, you know, kind of just minimize things and not be an alarmist. Other families want a bulldog who’s gonna, you know, tell the school what needs to happen. And, you know, they they want everything up front. They want you to be as blunt as possible. So um, sometimes it really just is fit. Sometimes, you know, certain families want a certain ethnicity, a certain gender, a certain orientation, um, a certain faith, right? And there’s nothing wrong with any of that. So it’s whatever the parent feels comfortable in terms of fit and feel like they’re safe and they’re heard, um, that can look like many different things. So nothing wrong with saying, you know, I think I’m gonna keep looking.

Dr. Amy Moore 56:29

And then how should parents find a diagnostician? Like what’s the best resource for that?

Dr. Rebecca Fontanetta 56:37

Yeah, I would say usually pediatricians usually have a good list. Um, psychologists usually have a good list. Schools, yes and no. You have to be careful. Sometimes they can kind of be a little bit rigid in who they might recommend. Um and developmental pediatricians, definitely. Um, other parents, that’s probably the best way to go. Um, other parents who have been through this process before. That’s probably the easiest to trust.

Dr. Amy Moore 57:08

Okay. And you would want someone who has a particular board certification or is licensed as a psychologist, neuropsychologist.

Dr. Rebecca Fontanetta 57:20

Yeah, you definitely want someone who is a doctoral level psychologist. Board certification is great, um, but I wouldn’t say it’s necessary. I know many very uh talented and well-qualified clinicians who are not board certified. So I wouldn’t say it’s not the same as the medical field. So that’s that’s a little bit different. But somebody who has extensive training, um, who has, you know, several people who can kind of vouch for their professionalism and care. Um, and you can always ask a clinician for a redacted report so you can get a sense of what their product is like. Okay.

Dr. Amy Moore 57:58

What do you want to leave our listeners with that you don’t feel like you’ve gotten to talk about in terms of this topic today?

Dr. Rebecca Fontanetta 58:05

I think just reiterating what you said earlier about you know your child best, and any word or label is not going to change who your child is. It’s only going to potentially support them in, you know, growing and progressing, you know, to a to their true capacity. And it’s it’s very complicated in terms of the rate in which the medical and psychology fields grow. So try not to be overwhelmed by the details, the names of treatments, the names of different therapies, the names of diagnoses, and just kind of take it back to what is going well for my child, what is easier for them, what is more challenging, and for the things that are more challenging, what are the potential barriers that we can help support? Is it a learning issue? Is it a medical issue? Is it a parenting issue? Is it an environmental issue? That’s really what you need to know at the end of the day. And that for any diagnosis, medical, psychiatric, or learning, otherwise, unconditional love is going to be more important than anything else you can do.

Dr. Amy Moore 59:25

I love that. Dr. Rebecca Fontanetta, thank you so much for being with us today. For sharing your wisdom and knowledge and experience. I know this is an important topic and one that so many parents wrestle with. Um, so I know that our listeners are gonna have so many great takeaways from the information that you shared today. So we really appreciate that you took time out of your busy clinical schedule to bless our listeners uh with this conversation.

Dr. Rebecca Fontanetta 59:55

Thank you. That’s very sweet, and it was my pleasure.

Dr. Amy Moore 59:59

Listeners, I love it that you choose to spend this hour with us every week. So if you want more information like today’s show topic, be sure to sign up for our monthly newsletter at theBrainyMoms.com. You can also find us on social media at the Brainy Moms. We will put links to find uh Dr. F in the show notes so that you can uh listen to her incredible podcast, um, visit her platform, Neurocyclopedia. I love the name of that. Um, she has some great blog uh posts and other resources. And so we’ll put links to find her and all of that in our show notes. Uh, that’s all the smart stuff that I have for you today. I hope you feel a little smarter after spending this time with both of us. We’re gonna catch you next time.