379 Helping Kids Understand Their Diagnosis with Drs. Katia Fredriksen and Yael Rothman
Lightly Edited Transcript

[00:00:00]

Penny Williams: Welcome back, everyone. I have two guests with me today. The authors of the Different Thinkers series of books are with me to talk about talking to your kids about their diagnosis, how to let them in on what's going on, but to also keep it strengths-based and positive and neuro-affirming. I get this question so often, so I'm so super happy to have some experts here to help me with helping you to guide your kids around this thing that isn't always common in parenting, right?

Having a diagnosis for your kid and trying to have those conversations with them. So will you all start by letting everybody know who you are, what you do, and then we are gonna jump right into all that good stuff.

Yael Rothman, Ph.D.: Sure. Hi, I'm Yael Rothman. I am a pediatric neuropsychologist [00:01:00] and I assess children with developmental differences. And this could be with learning or with social-emotional differences or attention and executive functioning differences. I am currently located in New York, and I met the other amazing speaker who's here today, who will introduce herself, when we were working together in a private practice in Maryland.

Katia Fredriksen, Ph.D.: So that would be me. I'm Katia Fredriksen. Like Yael, I'm a pediatric neuropsychologist, which means, as she said, that we do assessments and provide diagnoses, recommendations, et cetera, to families. So I work at the Stixrud Group, which has offices in Silver Spring, Maryland, and McLean, Virginia. Yael rudely took herself off to New York, but previously we spent a lot of time together. [00:02:00] But we're continuing to enjoy our time working, you know, on our book series, Different Thinkers, about presenting diagnosis, which is why we're here today, and so excited to chat about that.

Penny Williams: Yeah. Where do we start with this conversation? I think kind of normalizing that this is difficult. Like, if you're a parent of a kid who has learning or thinking differences, it's difficult to figure out when to tell them, how to tell them, what to tell them.

Yael Rothman, Ph.D.: And I think that's also because there's not really any research for us to look to, to say, "This is the way to do it." It's really interesting when you look back to neuropsychological evaluations in general. Feedback wasn't even part of the initial assessments that were done. It would just be the doctor telling the other doctor what was going on instead of even telling the client.

And then it was about telling the parents, but not telling the child. And now we are finally getting to the point [00:03:00] where we realize how important it is for everybody to know how their brain works and how they think and how they learn, so they can become their best self-advocates and understand how they think and learn best.

Katia Fredriksen, Ph.D.: And there's such a fear associated with it, right? As a parent, so many parents fear the idea of a, you know, quote-unquote, "label" that will sort of put their child in a certain pigeonhole and potentially circumscribe their future. These are very strong concerns that parents naturally have, and we always like to talk with parents about how kids are so much more aware than we might realize.

You know the expression, "Little pitchers, big ears," right?

Penny Williams: Mm.

Katia Fredriksen, Ph.D.: They're so conscious of what's going on around them in a way that we're not always privy to, and we wanna be sure that they have an accurate understanding [00:04:00] of the sorts of things that might be affecting them, that they might be noticing.

Penny Williams: And do we always tell our kids about their diagnosis? Is there a time where we don't or where we wait?

Yael Rothman, Ph.D.: So again, I like to think of myself as an evidence-based practitioner, and I don't have any research to look to in these situations. So I do try to make it more of an individual approach for the clients. But I would say I have not yet not recommended sharing a diagnosis with a child. I think that it can be such an important experience.

There are some, like Katia was saying, about empowering, changing the narrative, and also, like, everyone knows something's going on, but how about if we gave you words, a community, resources to look to, so you know you're not [00:05:00] alone in this journey? I have had some families who are not yet ready to share with their kids, and so I provided information on how I would do it and then said, "Please return when you're ready."

And I've had some families come back to me three years later, which has been amazing, and we were able to have that important discussion. I've also had families who want me to share strengths and challenges but not the diagnosis itself. And I work with everybody to meet you where you're at.

But I think that the language can be so helpful for a young person.

Penny Williams: Mm-hmm. Because they make up a story and blame themselves if they don't have an explanation. That's what I've seen.

Katia Fredriksen, Ph.D.: Oh, 100%. So true, right? We're so quick as human beings to attribute a negative to ourselves, unfortunately. It's very much internalized, "I'm the problem," as opposed to, [00:06:00] "There's something different about the way I'm developing that maybe my classroom is not geared toward," or, you know, that's not how kids naturally think in general, right?

Penny Williams: Mm-hmm. Yeah. It gives them an explanation for the struggle that they're having, which I think is really helpful for mental health, to not be blaming and shaming yourself, right? I think anybody would agree with that.

Katia Fredriksen, Ph.D.: Mm-hmm.

Yael Rothman, Ph.D.: And I think in some situations, some young people find it a relief. It can be comforting, and also maybe discovering a community. Like, I've had several autistic individuals who, when they find out about their diagnosis of autism, really find a community of other autistic individuals to befriend and get along with, and that's been amazing and empowering that way.

Penny Williams: Mm-hmm.

Katia Fredriksen, Ph.D.: It's worth mentioning, I mean, it's not always an immediate positive response, right? I mean, just, you know, ideally speaking, and [00:07:00] many times it is. But sometimes it's not, and then we can work to dispel any potential misconceptions. You know, the whole, "My cousin has ADHD, and I am not at all like..."

You know what I mean? Where people are sort of assuming that because somebody else has the same label, it means that they will present exactly... So you can help to dispel some of those ideas, but you don't always get an immediate positive reaction. I think that's part of what parents fear, right?

Is that the child will be angry or upset, and I would say that's pretty rare when you present it in a neuro-affirming manner.

Yael Rothman, Ph.D.: And,

Penny Williams: Even with teens?

Yael Rothman, Ph.D.: So one thing that I have been doing more and more throughout my career is this "feedback begins at intake." I don't know if you've ever heard of this theory, but I think maybe it was Karen Postal and Kira [00:08:00] Armstrong, they wrote this book about feedbacks with adults and a little bit with children.

But it's about sharing information throughout the process. So when I'm with a young person, a kid or a teen, I start saying, "How did you feel about the activity we just did?" And I hear their thoughts, and, "What do you think about what's going on?" And try to hear from them, "Why do you think this is happening?"

And then you can kind of start peppering in a little bit even before you give the feedback a few weeks later. So I had a recent client, I think a 12-year-old, who was telling me that they are really struggling with reading, and it's been really hard, "but I don't have dyslexia." I said, "Oh, okay. What does that mean?

What do you think that means?" "Oh, because the words don't flip in my head when I read them." And so I'm like, "Oh, here's what dyslexia actually is." And she goes, "Oh, I might have dyslexia." And I said, "Oh, that's one of the things we're gonna look at then and understand." But it [00:09:00] was so great, 'cause we were already starting that conversation even before I'm getting to the data or anything.

So I'm starting it, so then by the time I give the feedback, it's already a little bit there, so I don't have any surprises or something unexpected that might come up.

Penny Williams: So being really curious with them about what's going on, what they think is going on.

Yael Rothman, Ph.D.: I like that. Like, when something looks hard in testing, I pause. Like, "What do you think is going on here?" "Oh, yeah. Well, in school I also have that," or, "This is really tough." "Yeah. Uh-huh." So you said this is hard, and this is hard. And both of us, when Katia and I give feedback, we use the kids' words.

So we're really trying to tell families to do the same. What are they saying? "Ugh, math is so boring and hard," or, "I can't pay attention when it's not interesting to me," or, "It is so hard for me to start a [00:10:00] conversation." Whatever it is, I like to use their words. "You know how you said this? Well, guess what?

I saw that that is truly hard for you, and it has a name, and this is what..." You know, and kind of build on that. Is that what you would say too, Katia?

Katia Fredriksen, Ph.D.: Mm-hmm. Yeah, definitely. I mean, the more you can use, well, obviously the child's words themselves, or perhaps, like, a favorite teacher, you know what I mean? As long as it increases the, I guess, just the meaningfulness of what you're saying, just how deeply it lands, right? As opposed to this external doctor who you've only met a couple times is now gonna tell you about yourself, right?

That's not a particularly empowering experience for anyone.

Penny Williams: Mm-hmm. Yeah. And it can be such a challenge for the parents, and with emotion too. It can be really hard for a parent to, you know, maybe even tell them about the diagnosis without being openly emotional. [00:11:00] Is that okay? Or should they wait, right?

Katia Fredriksen, Ph.D.: I think it's better if they wait a little. Like we,

Penny Williams: Okay.

Katia Fredriksen, Ph.D.: we wanna be sure we have our own feelings managed, our questions answered, right? So we can go in with a sense of certainty and positivity about something. I mean, and of course, if emotions intrude, they intrude. I mean, we're human beings, we can't always control that.

But just the more we can sort of lay the groundwork. And part of it, I think, often is this whole, parents either realize or come to realize that maybe they had a similar profile when they were a child. And gosh, back in the '80s, it was darn hard having X, you know, this learning disorder or ADHD or whatever.

And so part of the narrative with parents can also be around, "Guess what?" There have been lots of advancements in terms of how we think about things and interventions, and it can help people sort of see things from a different angle.

Penny Williams: Mm-hmm.

Yael Rothman, Ph.D.: I think it can be really powerful to come in [00:12:00] without that bias that you might bring to the table if you're feeling negative, or positive sometimes, I guess, about what's going on. So just doing all your research, feeling comfortable with the diagnosis and profile, and then you can come in and explain it in a very understanding way for your child.

Penny Williams: Mm-hmm. You've

Katia Fredriksen, Ph.D.: So that's... Oh, go ahead. Oh, I was just gonna say that's something we can assist with. Like, we always offer, and gosh, I try to insist, especially with middle school and up, on doing a feedback directly with the student, because they're at an age where, you know, they really... And I'm happy to do it with the kids as well.

But so we can help with that. And also, many of us in our field are routinely starting to add a letter for the child in the report, so that they have a piece of sort of concrete, you know, something to carry on with them to refer to as [00:13:00]

Penny Williams: Love that.

Katia Fredriksen, Ph.D.: Mm-hmm.

Penny Williams: Such a great idea.

Yael Rothman, Ph.D.: Having something tangible, I think, can be really great, because the conversations are going... It's not one conversation, and you're done talking about it. You're gonna refer back to something over and over, have many conversations. I talk to every kiddo I see if we're all on the same page, and we're able to do the feedback.

And so I love talking to six-year-olds too. I think it's great. They have zero...

Katia Fredriksen, Ph.D.: Stigma.

Yael Rothman, Ph.D.: Stigma. Yes, yes. They don't know so much yet, so it's so nice to start the conversation with them. I love that. And they might not have a lot to say at that time, and that's okay. They're just kind of listening.

But I do a PowerPoint presentation, and Katia likes to do a letter. There's so many different ways to share this, but then you can refer back to it in a year, or talk to your interventionist in a year and share that with them, or whatever it might be, to continue that conversation.

Penny Williams: [00:14:00] Mm-hmm. How does a parent get started with this conversation? I feel like a lot of it is about concern, anxiety around having the conversation, how our kid is gonna react. Are we gonna be able to handle how they react, right? And just getting over that hump at the beginning can be hard. Is there some sort of general area that they could start with, or some general, sort of loose script maybe, that would help parents to sort of push over that hump a little bit and be able to get going?

Katia Fredriksen, Ph.D.: I mean, that's a great question. I think one thing that you wanna consider is picking a good moment, right? Like, we wanna start this conversation not in a moment of stress, or when we're rushing off somewhere and, "Oh, by the way," you know? Like, we really wanna sort of have a good moment, and in some families maybe that's sitting down together, maybe it's taking a walk, maybe it's [00:15:00] whatever.

I mean, just whatever works in the context of the family. So that's a piece to think about as we're sort of making our plans. And if you've done an evaluation, for example, with one of us, that's a natural point, right? You know, "You know how you met with Dr. So-and-So," and blah, blah, right? So that's a potential entry point if there's been an appointment with a professional or something of that nature.

Yael Rothman, Ph.D.: Katia and I have talked about kind of a step process to think about. Like, first, that parents get comfortable with the diagnosis, ask the questions that they need answered, and talk to professionals about it. And then, like she was saying, decide when the conversation's gonna happen. Having it scheduled, like, "We're gonna talk after you're done with this assessment," or having it arise organically, like if a child is saying, "Ugh, [00:16:00] I'm really struggling with reading today, and this is so frustrating that I can't sound these words out."

You know, there's a reason why, and it can arise organically that way too. But we like to present this information just how we present it to parents a little bit, where you start talking about strengths and talking about areas of challenge, introducing concepts like neurodiversity, and what a profile with these strengths and challenges could be called, and then, where do we go from here?

So talking about recommendations and supports that you could put in place.

Penny Williams: And of course, your Different Thinkers books can help with this too, right? I'm just thinking, like, do we start there, though? Do we start with maybe reading a book about what ADHD is like or what autism is like, and then go into the conversation? Or do we have the conversation and then... And I know this is different for everyone, but can [00:17:00] you give some sort of

Katia Fredriksen, Ph.D.: We certainly could. We certainly could, right? I have done some book readings at elementary schools with the ADHD book in particular, and each of the books, there's ADHD, autism, and dyslexia just came out, but with ADHD and the other two, there are three vignettes, right?

Three little characters who represent different elements of how the diagnosis may present. And so when I'm doing the readings at elementary schools and so on, and I even went to my daughter's school, and she was mortified. Anyway, so I'm doing the little readings. I'll go through, and I'll say, you know, "Does this feel familiar to you?

Like, how does..." You know, 'cause that's embedded in the text, sort of a cue to talk about, like, "Does this ever happen to you? So-and-so struggles with this. Have you had that experience?" And so when I'm reading that, sometimes kids will be like, you know, and they're sharing all their little things, and it's great.

I'm just laughing inside. It's so charming, because they're not old enough yet to know [00:18:00] to feel self-conscious, right? But it can be a good vehicle in that regard to get started, yeah.

Yael Rothman, Ph.D.: I think that can be very helpful for parents if they read bedtime books together with a character who has a different thinking profile, or watch a video, or even if they're watching TV together and they stop and say, "Oh, do you see what happened in this situation?" And you can also start by just sharing the diagnosis with your child directly and then going to these resources.

I think that both of these are fine ways to do it.

Katia Fredriksen, Ph.D.: You could use a prompt like either, "Remember that assessment you had?" Or, you know, "I went to your fall teacher conference and your teacher told me X." Or, "After soccer practice the other day, your coach mentioned Y." I mean, we could use as an entrée a practical situation that has [00:19:00] arisen, to sort of anchor it in real life, and then that can be the start of a conversation.

Penny Williams: Hmm. Yeah. So many ways to go.

Katia Fredriksen, Ph.D.: Yeah. There's no right or wrong.

Penny Williams: Yeah, there's no right or wrong, but I think parents fear that there is, and that's why it's so important to have the conversation that we're having, you know, you're not gonna damage your child in the way... I mean, I guess you could, but you're not likely the parent that's here listening to this.

You know? Like, it's not gonna be as bad as you think it's gonna be, probably. But what if something that a parent fears comes up? Like, what if the kid asks, "Does that mean I'm broken? Am I bad?" Right? What kind of responses can a parent have in their back pocket, so they know if this comes up, I know approximately what to say?

Yael Rothman, Ph.D.: Yeah, I think one of the things that we do when we share this is talking about, [00:20:00] also, "This is harder for you, but here are ways to help you. Here are other people who have similar profiles, and here are strengths that come along with this profile." So we're trying to embed that we're not saying that things are wrong or bad when we talk about neurodiversity.

It's about that everyone thinks in different ways. It doesn't mean one way is right and one way is wrong, but here are ways to help you be the best at how your brain works and how your brain thinks. So we don't sugarcoat that things aren't gonna be hard. I think that's important. I don't wanna say that I... I love... It's important to take a strengths-based approach, but it doesn't mean we mask everything that's gonna be a challenge.

And we go through that. But hopefully, what we're doing in the conversation is embedding all of this positive, and "look at all these successful individuals," and maybe a parent might say, "And I actually had this [00:21:00] challenge when I was your age," and just showing there's a way to support you and find what's best for you.

But Katia, I don't know if you wanna address specifically

Katia Fredriksen, Ph.D.: I was just gonna say I loved how you put that. I was just gonna say a practical example, like what I'll often write in letters to kids is, so just as a practical example, say you have ADHD, so I'll often write, "Here are all the things you're good at that everybody...

All the nice things your parents, your teacher, your coach, whoever I talked to, the things I enjoyed about meeting with you. Here are all the strengths I saw in the testing. Some things are harder. Guess what?" I mean, as is the case for all of us, right? "And here are the things that I saw that are harder for you."

So say, for example, if you're presenting an ADHD diagnosis, you could say, "I noticed in the testing, and your teacher said," or whatever, "that when things are harder for you, or you feel bored, it's harder for you to focus. And sometimes you make inattentive mistakes and, you know, have [00:22:00] trouble staying organized," that sort of thing.

Then it's still obviously just a very simplified description, right? 'Cause you don't wanna overwhelm someone. "Yet those things mean that you have something called ADHD." And then I'll sort of say, you know, "I don't know if you've heard of ADHD, or that you know how many strengths we know are associated with ADHD, like creativity, spontaneity, out-of-the-box thinking, energy, et cetera.

Many entertainers, athletes, inventors, et cetera, entrepreneurs have talked about how their ADHD has supported them on their journey." So you can sort of mention both the things that are harder and the joyful things that come along with it, right? So you're not losing sight of strengths, nor are you, as Yael said, masking.

I mean, things that genuinely can be harder, right?

Penny Williams: Mm-hmm. Yeah. I'm thinking about my own experience too, and I can't even tell you at this point. My [00:23:00] kid's almost 24 now, so I don't remember the exact conversation when he was six. But, you know, it seemed to be a relief to him because he was starting, even at age six, he was starting to blame himself.

And I remember shortly after, maybe within a year of the diagnosis, he had a therapist who did an activity with him where she had the big roll of paper, you know, and she had him lay down on it. She traced his body, and then the whole time they spent writing down all the things about him, and then talked about how ADHD was only one of the things that was all over that paper.

And I will never forget his face when I opened the door, you know, to come get him. He's done with his time with her by himself, and he's skipping down the hall. He's so happy, and I realized that, like, that's the moment where it was like, "Oh, my gosh. We really need to talk about more than the struggle,

Katia Fredriksen, Ph.D.: [00:24:00] Mm-hmm.

Penny Williams: and we really need to focus more on strengths," because I was just in fix-it mode, right?

That's all I knew at the time, and that was a really big eye-opener. But I also recommend it to parents all the time in coaching, like, do this activity, and you don't necessarily have to lay down on the paper. You can just have a little body outline, you know? Whatever works, but make sure that they recognize that they're more than just the things that they're struggling with, right?

Katia Fredriksen, Ph.D.: And so many strengths that certainly we can quantify when we do testing, but so many strengths that cannot be quantified, like being a thoughtful kid. Like, that's gonna carry you far in life, and we can't assign a number or a, quote-unquote, quantitative value to that. But these are things that we really need to help kids appreciate about themselves.

Penny Williams: Mm-hmm. Anything that we've missed that you feel is really important in this conversation before we wrap up? [00:25:00]

Yael Rothman, Ph.D.: I think we've talked about a lot of the ways that we share with families about how to talk about a diagnosis, why we think it's important, how it can be so empowering for young people. And then I think asking for help. If you as a parent are feeling not ready or uncomfortable, ask different providers to support you through this.

So you don't have to be the one that starts this conversation. It could be a provider that is with you in the room, and you talk all together, and then you continue that conversation later.

Penny Williams: Mm-hmm.

Katia Fredriksen, Ph.D.: That's an excellent idea.

Penny Williams: And you continue it as they grow, right? If they have an earlier diagnosis, I think the understanding of it can sort of morph and change as they get older too.

Yael Rothman, Ph.D.: 100%. Again, that conversation's gonna look different. I had a talk with my son at the age of five about [00:26:00] ADHD, and it's gonna look very different when we talk about it in a few years, and keep talking throughout time. But it's just part of the story. Yeah.

Penny Williams: Tell everybody where they can find the book, where they can find you all online, so that they can continue to learn from you.

Katia Fredriksen, Ph.D.: Well, we have three books. It's the Different Thinkers series. There's ADHD, autism, and dyslexia, so you've got a variety pack there. Our publisher is Boys Town Press, and the books are available there. They're available on Amazon. They're available, you know, out and about in the bookstore, the library.

I saw it at my public library the other day, so that was nice. And we have a website, neuropsychmoms.com, where you can contact us and just, you know, gather information.

Yael Rothman, Ph.D.: And right now the books are translated into French and Vietnamese, if those are resources you are looking [00:27:00] for. But yes, you can find our website, Neuropsych Moms. You can find us on Instagram at Neuropsych Moms. I am in New York at my own private practice, and Katia is in Maryland at the Stixrud Group.

Katia Fredriksen, Ph.D.: Mm-hmm.

Penny Williams: And I'll link the book up and your website up in the show notes, so it's easy for everyone to find and connect with you. Thank you for writing these books for kids about hard conversations and hard topics. Like, it's not easy stuff, and I find more and more parents actually looking for books that kids can read where they can either see themselves represented or they can learn more about their diagnosis from other avenues, and not just from the parent or the clinician.

And so I love that we're getting more and more of this [00:28:00] available, so I really appreciate what you guys are doing.

Yael Rothman, Ph.D.: Thank you so...

Penny Williams: ...helpful.

Katia Fredriksen, Ph.D.: ...of you. Thank you for having us.

Yael Rothman, Ph.D.: It's why we wrote them. We couldn't find exactly what we were looking for when we were trying to find...

Katia Fredriksen, Ph.D.: Yeah, parents ask all the time.

Yael Rothman, Ph.D.: Yeah, that's us all the time.

Penny Williams: Yeah. Yeah, I get the question a lot too. So now I have some more books to add to my recommendations,

Katia Fredriksen, Ph.D.: Thank you.

Penny Williams: excited about. So I'll see everybody next time. Take good care.