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After the diagnosis: How kids feel about their learning and thinking differences

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Getting diagnosed with a learning and thinking difference can be a big relief for many kids. But for some kids, the news can lead to many questions and worries. They may not want to talk about their diagnosis at all. And sometimes, the way kids respond to their diagnosis changes over time.

In this episode, hosts Gretchen Vierstra and Rachel Bozek welcome Preetika Mukherjee, a pediatric neuropsychologist. Dr. Mukherjee offers suggestions for ways to talk with your child after a diagnosis. Tune in to get her advice on making these tough conversations easier.

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Episode transcript

Gretchen: From the Understood Podcast Network, this is "In It," a podcast about the ins and outs...

Rachel: ...the ups and downs… 

Gretchen: ...of supporting kids who learn and think differently. I'm Gretchen Vierstra, a former classroom teacher and an editor here at Understood. 

Rachel: And I'm Rachel Bozek, a writer and editor with a family that's definitely in it. Today we're talking about all the complex and sometimes shifting feelings kids have about their learning and thinking differences. 

Gretchen: From the first time they hear about it, to much later, when they've been living with it for a while. 

Rachel: Joining us for this conversation is Doctor Preetika Mukherjee. Doctor Mukherjee is a pediatric neuropsychologist in New York City. Previously, she was director of neuropsychological evaluation services at Mount Sinai St. Luke's Hospital in New York City. 

Gretchen: In her practice, she sees young children, teens, and adults. And she has two kids of her own. We're delighted to have her with us today. 

Rachel: Preetika, welcome to the podcast. 

Preetika: Thank you. 

Rachel: To start off, we were wondering if you could tell us about what you do as a pediatric neuropsychologist and where delivering information about diagnoses fits into the picture. 

Preetika: So, I do assessments and evaluations with kids, teenagers, and young adults. So I usually get kids through either schools, the school psychologists or their treating psychologists, or the parents have questions and something is going on and they can't figure out how to help the child, either in school or in treatment. So, trying to figure out what is coming in the way of their either learning or social-emotional functioning or general day-to-day life. 

So, in that process — sometimes it leads to diagnoses and sometimes it doesn't — and then that is provided to the parents and the child. 

Gretchen: And so, when it comes to sharing a diagnosis with kids, I'm wondering if you can talk a little bit about how you might deliver that information to... let's start with a little kid. 

Preetika: Yes. So, I see kids — and I will not do it with a 2 or 3 year old because I do see little ones as well — but starting at around six, I would say I would sit with a child and talk about, because they spend anywhere from 5 to 7 hours with me. Right? So, for the evaluation process, I observe them in their classroom. So, they spend a lot of time with me, they get very familiar. 

Through the process, I try to make it as playful for them as possible. So we are interacting and they're telling me, "Oh my God, this is so hard," or "This is so easy." And I always tell them, right, "You do your best and it's totally fun." I try to not use the word "test" or "evaluation" or "assessment" because that just becomes so like "I'm sitting here judging you with what you're doing." 

So, I try to make it as playful, like "Try your best and we'll figure out what your superpowers are." For the little kids, those words really sometimes make more sense than "strengths" and "weaknesses." 

So, when they come back for feedback, I start there, right? Because they've spent so much time with me and they've told me, "Oh, that was so hard." So I would go to those tasks or like, "Remember when we were doing that story? I told you the story and you had to tell me back the story? My goodness, right? That was really hard for you. Remember those?" And they would be like, "Yeah, I forgot so many things in the story." 

So, I start from, you know, first I'll talk about all their strengths, things that were so easy for them. "Oh my God, I made those blocks and the patterns were so easy. And I did it so quickly and I was so proud of myself." So we would talk about that. And then we talk about, "So what was really hard? And why was that hard? Do you remember that, you know, you started talking about something in the middle of the story? Remember how your brain just like, went somewhere else and started doing things that you were not supposed to do in that moment?" 

And we make it again, very conversational. Taking those examples and helping them. Then, putting those examples in the classroom. Does that happen in the classroom when the teacher is giving you instructions? Do you sometimes start talking to your friends? Or your brain is like, "Nope, I'm not doing this right now. I want to do something else." And that is how I try to make it more sense. So, for the little kids, it's not so much about the diagnosis. If they're ready to hear the diagnosis and the parents are like, "I think that'll help them." 

So, I have that conversation with the parent beforehand, about what I'm gonna talk to the kid about. And then I bring the parents in at the end of the session, and empower the kids with all this information and tell them that "I'll help you, but I really want you to tell your parents what your superpowers are." 

That would be so helpful for your parents to know what your superpowers are, and some of the things that might not be your superpowers and might be hard for you. So that we are all on the same page and they also have the words to use and understand their own strengths and weaknesses. 

Gretchen: Yeah. So, then I understand definitely the little kids, you might just focus on the strengths and the challenges and then not really give them the diagnosis. How does this conversation then go with, let's say, a teenager. 

Preetika: Yes. And I love working with teenagers. They are a very interesting bunch. 

Gretchen: Aren't they? Yes, we have two. So, we get it. 

Preetika: All right. And so do I. But it is not very different if you think about it, right? Again, they're spending a lot of time with me, but they are also — because they are at an age where they know where they're struggling and they're very aware — they might not know why, right? But they know that "these things are hard for me." Sometimes it becomes tricky because they start looking for the whys and go in the completely wrong direction of, "Oh, maybe I'm stupid. Maybe something is wrong with my brain." 

Like, they just go in that direction, which might not be the right direction to go in. And that leads to more anxiety and then depression or some other things that start coming up. So, my job becomes like teasing apart these issues. Right? So, OK. What else has developed through the years because they might have not been diagnosed early enough or not getting the supports early enough, or they were trying to hold on and work really hard, but now their hard work and compensation is not working as it was working before. 

So, I sit with them and again, I start from the strength perspective, right? So, that I want to take away that conceptions that they had made about themselves, that "I'm not smart." OK? "I have the data. Let's look at the data. This is how well you did on this area. So, you know, that cannot be that you're stupid. So, do we take away that from the table. And let's talk about why you've been having these difficulties." 

So, we do a lot of standardized test, look at different parts of the brain or different functioning, right? So, talking about "OK, so, this was a test of sustaining attention. And this was really hard for you." Or "This was a test of organization and planning and that was really hard for you. You could see little pieces of it, but putting it together was not easy." I can go way more in details with them — depending on where they are in their journey of this understanding — and help them what that means and how that comes in the day-to-day life. 

Because these things, it's not just school, right? Even getting up in the morning and getting ready for school and getting to somewhere on time, it might be really hard for them to do. And again, they've been hearing words like, "You're lazy, you're not doing this" and helping them understand that even if you try, you're not able to do it. So, sometimes you just give up. You're like, "OK, it's not going to happen anyways and I'm going to hear that I'm lazy, so what's the point?" So, let's think about different ways that makes it easier. 

And then, again, even with teenagers, I always call parents in and have that discussion. I might not ask them to describe it, because teenagers sometimes don't want to do things like that. And so, I would have the parents come in and talk about it, and then have that discussion while they're there. So, it becomes more like a family therapy. 

Because then we can have that discussion together and they can bring up things. And "Listen, Mom, you said I was lazy. Doctor Mukherjee said, 'No, that's not lazy.'" Right? So that can come up as a discussion, which is a healthy discussion to have. And to go from there of what interventions we can put in place. 

Rachel: Can you talk a little bit about some common reactions? Like, you know, what you get back when you do have that initial conversation with a kid? 

Preetika: Yes. That is very interesting because it also depends on the kid and where they are in the process and journey. Little kids, it's very interesting. So, when they're with me, without the parents, they might be more engaged in talking about it. When the parents come in, some kids are excited in talking to the parents and giving them this information. 

But some kids completely shut down. And they're like, "I'm not going there. I don't want to talk about this. This is too hard." So, I help and I bring this up and I ask them, I always ask their permission, "Is it OK for me to talk about it?" And sometimes they say yes. Sometimes they are like, "Nope. You can talk about it when I'm not here." And I'm like, "Oh, right." I respect that. Because that is where they are. And I don't want to increase their anxiety in that moment. 

With teenagers, some teenagers show "OK, this is great. I understand now where all this coming from." And some are like, "No. I don't have those difficulties. I don't want any support, you know? And, I don't believe in what you're saying." So, I've had very interesting more, I would say of relief, that "Yes, now I understand." But definitely some who are absolutely not there to take this information in and are very anxious or defiant. 

Rachel: Are there cases where it's a little bit of both — where it's like, they get it and they hear you — but they're like, "But there's something wrong with me." 

Preetika: Yeah. Oh, and to add to that, there are some who will hear everything I have to say and then reflect back, "So, you're saying I'm stupid." Yeah, so, they look at me and like "So you say I'm stupid and something's wrong with my brain." That is all they hear. Right. So it's what they take in. I'm giving all this information, but they are still perceiving — because it's been so long that they've been hearing this — that they're like "OK. And that is why my parents brought me here. Because there's something wrong with me." 

Gretchen: And that makes me wonder then — especially with older kids, you know, how there's like stages of grief or like stages of acknowledging that you have, like an illness? Do kids go through that? Like maybe that's their first reaction of like, "Yep, you know what? Something's wrong with me. So, goodbye. I'm done." But then, like, it settles in like, "Hold on a minute. What does this really mean?" Like, have you seen that with kids? 

Preetika: Yes, absolutely. Because now that I've been doing this for like 15 years, right. So, I've seen kids through different stages. That maybe early on they were at that place where "I don't want to talk about it. I don't care. And, you know, you're just telling me what you're telling me." And slowly, hearing this over that "You know, you are smart and interventions can be put in." 

Because I think what kids really care about is, "OK, so you're telling me all this, right? I have strengths and weaknesses. So what?" And one of the teenagers actually, recently said that to me. "I'm sitting here, you're doing all this. What difference does it make. My life is not going to change with this." Right? So, and he was so mad because he's like "I don't know why I'm here because nothing is going to change for me." 

And I had to sit with him and tell him all the ways, like what can be done and how things can change, because he was getting no support in school and he needed those support. And just talking about it, I could see that affect change just like, "Oh, oh, nobody told me this, that this can happen." So, that really helps for them to know that there is something right at the end of that. This is not just "You sit here for six hours, I torture you, and then bye bye." 

Gretchen: I wonder, since you've been in this field for, you know, for a while, have you seen things change because of social media? Have you seen kids react differently to the diagnosis? Because they're like, "Oh, I saw that on TikTok." Like, what kinds of things are you seeing in your practice? 

Preetika: Oh, yes. Oh my God. It's so much for me to learn because when I started, there hardly was any social media. So, now kids come in with this knowledge like, you know, "I have this and I saw this on TikTok and they said, this is what I should do." And they come with all these different things which are not research-based and are social media-based. And they talk about it in ways that it is the fact. Because, "Oh, they talked about all the symptoms and it just is what I am feeling." A lot of teenagers have been self-diagnosing. 

They come in and they'll be like "Oh, I know you're going to tell me I have ADHD." I'm like "OK, because I don't know that. But OK. Let's see what we figure out." So, social media definitely has its pros and cons. But I think a lot of information, positive and negative, is being thrown and the kids don't know what is helpful and what is not helpful. 

So, it sometimes hinders what we do, because they come in with these notions. They're like, say they come in and they're like, "I absolutely have ADHD." And then I find out that, "No, no, you don't have it." They're like, "No, that is absolutely not possible. This is what I know." And it's a challenge. 

Rachel: Because they've already told like 20 people that they do. They probably posted it, "I have ADHD." 

Preetika: And they so believe it, and so strongly that then they get mad if they don't have it. 

Rachel: So, after you've had this initial conversation with the kid and with the parents. You know, they're going home, they're going to keep talking. Are there any rookie mistakes that you see a lot of parents or caregivers making in the ways that they're talking about learning and thinking differences, that maybe backfire when they're trying to communicate and they end up kind of like making things harder instead of making them easier? 

Preetika: Yes and no. I mean, again, before I speak with the child, I always speak with parents, and I provide them information for how to talk to their child. And one of the biggest thing we talk about is validating. That "I understand this is hard for you." Taking out those words like, "Oh you're so smart, but you're lazy." Taking out that vocabulary and just validating that some of these things are difficult. Now you understand why, and helping them in those areas. 

So, that is where I see the most mistakes where parents, when they don't know or even after I've provided them the feedback and they go back home and they go back to their old ways. Because it can be frustrating, right? When parents know, "OK, I know you're able. I know you have that ability. You're smart, you understand what you have to do, but you're not doing it." And so for a little bit they'll be like, "OK, OK." And then you're like, "I told you to do this and you're still not doing it!" Right. So, I know it's hard. We all have teenagers. 

It's hard to have that line of where it is that you're not doing because you don't want to do it, and you're just pretending not to listen to me. And where is it a real challenge that you really cannot do it? 

Rachel: We have been talking about these initial conversations that parents and caregivers have when the diagnosis is brand new. But we also want to talk with you about how a child's relationship to the diagnosis may change over time. I think we all hope and maybe assume that it changes for the better. They get more comfortable with it. But I've also heard of cases where, say, a teenager starts to get really resistant to talking about it. 

Like, maybe started out just kind of like, "Oh, this is what we're doing now" because they're in like, first or second grade and they're just going with the flow. And now that they're in middle school or high school, they're much more resistant, maybe even like acknowledging it. So, why do you think that might happen? 

Preetika: It could be many different things. But one of the things that came to my mind when you were talking about that, that every diagnosis, how it interferes with functioning, changes with age. Right. So, developmentally, very bright kid, when they're young. ADHD does not interfere in their functioning as much, or might not, because when they're going to school in elementary school, the structure is provided by the school. 

They're really smart, so they can do the academic work. It does not affect the academic work as much, and it's not affecting the social piece, because the social piece is more related to playfulness, running around. It's not sitting and having that conversation and deep meaning and connection and all that. Right? But as they get into middle school and high school. It starts to affect them more in many different ways. Right. 

So, in middle school, it might start coming in the way of their social functioning because now they have to really focus on things they're doing, and their connections and making those deeper conversations with friends, which they're having a hard time doing because they're not focusing. The friends are getting a little annoyed. "You're not listening. I told you to do this and you didn't do this, right?" So, that conflict starts happening in school, beyond fifth grade. 

Up until fifth grade, the teachers are providing that structure, and beyond that, they're like, "OK, now you need to be independent. You need to do some things on your own. You show me that you can go to your locker. You show me that you can go to different classes, be in different classes on time, that you have different homeworks. You figure out how to do it." 

Rachel: I'm getting overwhelmed, right? 

Preetika: Right? So, a lot of executive functioning and attention comes into play. And until now, you were doing great and you did not need. And now you're like, "Oh my God, I barely can hold on." Come high school. It's like, hands off, right? "You're on your own. We are here if you come to us and we might help you, but we are not here to come to you and be like, do you need help?" So, the demands keep changing. 

And so, if a child is struggling, the way they struggle changes by middle school, then the anxiety starts setting in, and they're like, "OK, I was able to do this even though my diagnosis. I know my diagnosis, I have ADHD, but I was doing fine. What happened now?" So, the anxiety starts to go up. Now you start questioning. You're like, "No, something is definitely wrong." 

Some kids are open to talk about it. Some kids are absolutely not in they shut down and they withdraw, and they don't want anything to do with it because they're now questioning that like, "Where do I go with this? I don't know what the future looks like for me." 

Rachel: So, what do you recommend for parents who have a kid who's basically giving the message that they don't want to talk about this, don't want to talk about the diagnosis, anything related to it, like at all, ever. 

Preetika: Yes. And that is very common. I tell parents "You need to take a backseat." Because sometimes it is that stage — teenage stage where they want to go away — like, they are pushing away from parents towards their peers and others. Right? So, that is developmentally where they are. So, if we keep pushing as parents, OK, "Talk to me. Talk to me." I mean, we coming from a really good heart and we want to help them. Right. So, we're like "Can you tell me what's going on?" And we are kind of pushing them away a little bit, because they don't want to talk to us. 

And developmentally they are at a stage where they shouldn't be. They are trying to get away from us and try to get to the social world and independent and where they need to be. I would say if there is a trusted adult in their life that they trust, either in school or outside — sometimes it could be a therapist, sometimes it could be a guidance counselor, a teacher who they really trust — talking to them and asking them if they can kind of start this conversation. That, "You know, I've noticed that some of these things might be hard for you. Can we talk about it?" So, empowering others that the child trusts, I would say, is a better path to go, than as parents, us trying to force ourselves on them.

Rachel: Yeah, yeah. That's hard to hear. 

Preetika: I know, I know. And as parents, right? As they go through, oh my God, it's so hard to be like, "OK, I'll come to you when you come to me and say, 'I need you.'" But otherwise, I'm taking a backseat of "OK, I'm here. I'll be there when you need me." But if I push too hard, I'm pushing you away.

Rachel: Right. And it's really hard to not be like "Except that I know you need to hear this right now, because if you don't, all these bad things are going to happen." 

Preetika: Yeah. That's our anxiety, right? That is our anxiety.

Gretchen: OK. So, I get that we want to give our kids space, that independence. And at Understood we talk a lot about the importance of teaching kids, especially older kids, to speak up for their needs to self-advocate — whether it's at school or at a job or whatever — but what do you do if you are middle school or high school student has an IEP or 504 meeting coming up, and they want nothing to do with it? 

On the one hand, I kind of want to make them go in order to be able to self-advocate and talk for themselves at the meeting. But on the other hand, the fact that they just said they don't want to go is kind of self-advocating. They're telling you they need the space, they don't want to do it. So, as a parent, what do you do in that case? 

Preetika: That's a great question because a lot of parents — and I do a lot of IEP meetings — and parents would always ask me, "Do you think my child should attend?" And based on where the child is, I make the decision, "Yes, it will be helpful for the child to attend or not." Because the IEP meeting is not a feedback session, right? You know, you're not sitting there like, "OK, these are your strengths and this is where your weaknesses are." It's all about "OK. So, these are your weaknesses and these are the interventions we're going to put in place." 

Now, if the child is at a place where they're ready to hear that and go there and be like, "OK, I really need to know what the support systems are." Absolutely. That will be empowering for them. But if they're not there and they're, you know, you have all these deficits and all these interventions will be put in place. It might be very anxiety-provoking for them. 

So, it's not for every kid to attend the IEP meeting. It depends on where they are. And if the child is in high school they should be given an option. It should be like, "You know, if you want to, you know, we'll be talking about the supports that you can get in school. Do you want to attend that? It might be helpful for you to know." If they're like, "Nope," I would say we should respect where they are. 

Gretchen: Yeah, OK. That makes sense. But again, like Rachel said, probably hard for parents. Yes, I can see being like, "No, you need to go. You need to learn to self-advocate. You have to be there." 

Rachel: Totally. I've also seen some situations where the parents and the kid are on the same page, that it may not be constructive or productive for the child to attend the meeting, but the counselor or the teacher is like, "Oh no, you know, they really need to be there to advocate for themselves." And it's like, I love the idea of that, but I know my kid and I don't think that's actually what's going to happen when we're in there. 

Preetika: Yes. So, I think you bring a good point, Rachel, that it is important to know — and have that conversation openly with the school — that he or she does not want to be in the meeting at this point. And as a parent, I feel like they're not there emotionally. Or, you know, for whatever reason. And let's have that conversation and I will provide that information. And we, as a team, can help the child learn how to advocate for their needs. But I don't think that is in this IEP meeting. I think it's important for the parents to know that they can do that. 

Rachel: Going back to the start of our conversation, when we were talking about delivering information about a diagnosis to a kid, I can imagine a lot of parents and caregivers have anxiety about that moment and how their child might react. So, I wanted to ask, can you think of a time that you had a conversation with a kid about a diagnosis, and the reaction went in an entirely unexpected or particularly moving direction? 

Preetika: Oh, I was just thinking of this. So, autism in girls. It was not diagnosed as often because girls show symptoms very differently than boys. And most of the research that has been done has been done in boys. Right. So, the way girls show their symptoms early on sometimes does not even look like autism. And they mask a lot of these symptoms because they are very social. They have these social connections. They want and desire friendships, so they mask a lot of their difficulties. 

So, recently I had a girl who was diagnosed early on but with ADHD, never with autism. She's now 16 and I met with her. We went through the whole testing, and it was pretty clear for me that she was showing many autism symptoms, and the diagnosis would be autism. Now she's 16, right? She's been through multiple evaluations and never diagnosed. So, I was kind of a little worried going into the feedback session, both with parents and the girl. Like, you know, this would be a hard conversation to have. 

With the parents, I had that conversation and they were worried about the feedback and what it would mean for her. So we were going back and forth. Should we tell her the diagnosis? Should we just go over the symptoms and what the interventions need to be? I spoke with her therapist, like we had a whole plan. And I was like, "OK, so I'm not going to use the word autism. But we'll go into the difficulties, the rigidity, the fixations, the social communication difficulties, right? All those things. And we'll leave at that. And then interventions like what we put in place. 

So, she comes in. Then I'm going through this and she looks at me. She's like, "You're telling me I have autism, right?" And I just looked at her. I was like, "What?" She's like, "Is that right?" And I'm like, "Yes, all these symptoms actually lead to that diagnosis." She's like, "Oh, thank God, I've been thinking about it. Nobody tells me that." And I'm like, it was the sweetest moment where I looked at her and she's like, "Oh, thank God, now I have a name. 

Because, you know, I've been questioning about it, but nobody tells me." And that really, you know, I was like, "OK. For her, that was such a strong moment." And she's taken it in and she's like, "OK, now I can move forward with what I need to do," because she's a smart kid. She was just like, "I just do not understand why I was not getting any cues. My friends would be like, 'Oh, that boy's interested in you.' I'm like, What? How do you know that?" And she was like, "Now I know why. And so, that was a great moment for me. 

Gretchen: Well this has been a great conversation. 

Rachel: Thank you so much. 

Preetika: Thank you for having me. 

Gretchen: You've been listening to "In It" from the Understood Podcast Network.

Rachel: This show is for you. So we want to make sure you're getting what you need. Email us at init@understood.org to share your thoughts. We love hearing from you. 

Gretchen: If you want to learn more about the topics we've covered today, check out our show notes. We include more resources as well as links to anything we mentioned in the episode.

Rachel: Understood.org is a resource dedicated to helping people who learn and think differently discover their potential and thrive. Learn more at understood.org/mission.

Gretchen: "In It" is produced by Julie Subrin. Ilana Millner is our production director. Justin D. Wright mixes the show. Mike Ericco wrote our theme music.

Rachel: For the Understood Podcast Network, Laura Key is our editorial director, Scott Cocchiere is our creative director, and Seth Melnick is our executive producer. Thanks for listening. 

Gretchen: And thanks for always being "in it" with us.

Hosts

  • Gretchen Vierstra, MA

    is the managing editor at Understood and co-host of the “In It” podcast. She’s a former educator with experience teaching and designing programs in schools, organizations, and online learning spaces.

    • Rachel Bozek

      is co-host of the “In It” podcast and the parent of two kids with ADHD. She has a background in writing and editing content for kids and parents. 

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