How toTalk to Your Child About Their Diagnosis

Penny Williams: Welcome back to the parenting ADHD podcast. I'm so excited today to be talking to Dr. Emily King. And we are talking about how to talk to your child about their diagnosis, how to talk to them, when to talk to them, why you would want to share that information with them. I'm super important conversation and very valuable as to what you as a parent really need to think about as far as having a diagnosis and who to talk to you about it. And when Dr. King, I so appreciate you being here and sharing a little of your time and wisdom with us. Will you start just by introducing yourself, who you are and what you do?

Dr. Emily King: Absolutely. Thank you so much for having me. Penny. I am a licensed psychologist and private practice and Raleigh, North Carolina. I started out as a school psychologist, worked for five years in public schools actually and Houston, Texas and right outside of Houston, Texas. I did my internship there and stayed and got a really great experience there with mental health and the schools and a huge range of needs and working with kids and schools and families. And then Raleigh is home, so returned home and I've been in private practice sense. I specialize in kids with ADHD, anxiety and help their families support their behaviors. But also I use the DIR Floortime approach in therapy and also some cognitive behavioral therapy with the older ones to help them understand their emotional regulation. And of course I'm consulting a lot with collaterals like OTs, speech language pathologists, psychiatrists and helping kids and families navigate their team. I also a couple of years ago, started the parenting on your own path blog, which name was inspired just by the fact that every single family I work with is on their own paths and we've gotta just get there and let go of whatever path we had in our head or whatever path our neighbor's doing and follow our child, follow our child and what they need and being that parent that our child needs. I have two boys myself — a 12 year old and a six year old, so I am a boy mom.

Dr. Emily King: Well, where do we start with this conversation? I think really it's, we start with, do you tell your child and why? And then we can kind of move into maybe what that conversation might sound like. Right?

Dr. Emily King: So we absolutely talk to our children about how their brain is wired and how their brain works. What their strengths are, what their needs are. The timing of it is going to be different for every child. Like any other big conversation, whether it's about religion or grief or the sex talk, you know, this all comes in layers and it's layered often by developmental awareness of what they can understand developmentally and also led by where their frustrations are at that time and helping them understand why they're feeling frustrated about that.

Dr. Emily King: They're not imagining it. It's so important for them to understand that this is a skill issue that they're feeling and not a lack of character in some way or not. Trying hard enough in some way, which sometimes adults that don't understand them may have inadvertently made them feel.

Dr. Emily King: So we need to protect them with the knowledge of if a, let's say a coach makes a comment about something they can, when they're older say, no, that's actually, I am trying my best. This is just hard for me because of X, Y, and Z skill. I need extra support in this area.

Dr. Emily King: Yeah. That advocacy piece is so important and can be really difficult because our kids sometimes have anxiety and they don't want to seem like they're challenging an authority figure, like a teacher or another adult, but there are ways for them to have those conversations where it doesn't feel like a challenge. It feels more like saying, Hey, this is what I need. I need your help. This is what I need from you.

Dr. Emily King: And that self-advocacy often begins with all kids, usually around middle school time of it. At what point do I reach out to a teacher or maybe help and helping your child write an email to a teacher if something's not going well and we want the groundwork to be laid before then? I mean, usually if I had to give an age, I would say roughly, you know, third, fourth and fifth grade depending on your child's development. Helping them understand why learning is starting to get a little harder. So by middle school they know what's hard for them. And we're working on the self advocacy piece of, Oh, this is that area that I need this support and, and we're helping them reach out to that teacher or speak up for themselves. It's harder for them to process, Oh, this is hard for me and I have to tell people about it. If they've had a few years to settle in with that information and grow in other areas that they have strengths and it helps them balance that idea of strength versus need.

Dr. Emily King: Yeah. When, let's talk about when, when do we talk to our kids? Do we talk to them when they first get diagnosed? Do we share with them why they're having this evaluation before they even get a diagnosis? Is it more age dependent?

Dr. Emily King: Right. So probably in the last five to 10 years we've seen an increase in how young kids are getting diagnosed, which is fabulous. So it's, we could have an 18 month old diagnosed with autism. We could have a four year old diagnosed with ADHD. At that age, it's not necessarily developmentally appropriate to explain all of this. We would just explain at preschool ages that we have this helper that we go, we may call it a therapist, you know, I help her, that we go play with and she helps us learn how to move our bodies and get stronger, which would be like an OT under helping kids understand, Oh, it's been harder for me to be clear with my words and I, and if they're noticing that it's harder for them to talk. Oh, I go to see so and so and she helps me get my words clear. So it's more about when does your child start to notice differences and naming that difference. Connected with, we're doing something about that and this is your helping person that we're going to go see. And some of those conversations are going to be in retrospect. So some preschoolers just go with the flow and they go to whatever therapies. Like it's an extracurricular activity. They are not even bothered by it. Well around early elementary, if you're starting to see more awareness of differences, you can explain. Yeah, well this kind of thing is hard for you. Back when we used to see, you know, Ms. April, she was your OT and what that is, is a helper that helps keep your body strong and helps you calm your body when you're really excited or really angry and helps you learn to write.

Dr. Emily King: And you can give some examples that they may remember. And they also, young kids may not remember and that's okay, but as they're getting older, you're really just normalizing. Yeah, this is hard for you. So the quickest answer to this, and it's going to vary for every child, but when a child is starting to feel frustrated and starting to notice differences, we want to get right to it. We want to get right to let's talk about what you feel. Yep. I think that that sounds like it's harder for you if you've had a diagnosis and an evaluation, we would want to go ahead and share generally some of that information with them. And then if you're on this journey together and you're thinking, Oh, we need to get some testing done, then helping them understand we're going to see a psychologist and their job is to figure out how you learn and we are going to figure this out together.

Dr. Emily King: Yeah, and I think too, an important piece of it is to have that conversation about how everybody has differences. None of us are the same. We all have some sort of struggle or weakness. And even I think simplistically we could say, you know, we have this family member who plays the piano really well and isn't that amazing? It's an amazing talent, but you know, I couldn't play two notes together and that doesn't make me less of a person. We just have different strengths. I am good at writing or whatever it might be. And kind of helping them relate that in a real world way too for the younger kids. But you know, they get to school and they just feel so overwhelmingly different. Oh, that they do. And it's so defeating. And to keep that conversation kind of alive that everybody struggles with something. And this happens to be where you need more help. And that may be different than a lot of your friends, but it doesn't make you less than

Dr. Emily King: Right. And so I always will coach parents to let's focus first on the abilities. Like you said, what are the interests and the motivations. It sometimes is not academic and we need to help kids not just get the message that academic means successful because that is so not true in our culture really anymore. I mean we have technology jobs that are so incredibly successful that have really changed outcomes for a lot of kids that may have language weaknesses, but really strong memory and technical skills. So to help them understand we all have a range of abilities and then things that we need support on. And I purposefully don't use the word really disability or diagnosis very much or disorder very much. I don't feel like it serves kids in a way that is positive at all. And I would rather focus on these are your abilities and then these are the areas that you need extra help on to try to do the next thing, whether it's through school or learning a skill that they wanted do.

Dr. Emily King: And also letting them know, and this is particularly true for kids on the autism spectrum, that their profile of strengths and needs is sometimes much more variable than the general population. So they may have really high abilities and then really lower needs and school is right in the middle. They're teaching them the middle stuff, so it's either too hard or too easy. And validating that for him. And why or for them and why that kind of misfit feels that way about traditional schooling. And then the next step would be arming yourself with knowledge on a psychoeducational evaluation. You know, all parents have their gut instinct of, Oh my kid's super verbal or they have a great memory, or gosh, math is really hard. But actually having the ranges compared to other children developmentally is so helpful for advocating for them. Data on a page of sharing with an IEP team or school staff to get a five and four is just so helpful and showing, you know, we're not imagining this, that this is a weakness or look at the strength, let's teach to that strength so that we can keep this child motivated to keep going.

Dr. Emily King: And I've seen for my own son that the misunderstanding of others has been the most negatively impacting on him. So when he has a teacher who sees that he's wicked smart and they typically then formulate their, their expectations based on that, they think that that's the measure of ability, right? In the academic setting. And then he has all of these sort of functional output organization issues then. So that just automatically looks like laziness or lack of motivation. When our kids understand themselves better and are self-advocating, then they're helping their teachers to understand better, which helps their teachers do better for them really.

Dr. Emily King: And for everyone. You know, I think this is a need in teacher education that I think some teachers really get this a solid foundation of this. And it seems like some don't. And I also think some just people in general, not just teachers just, just know this from their life experiences and their family experiences. But I usually teach kids about different kinds of smarts so that they can understand and that that's a social thinking term, I believe originated with social that they don't just have academic smarts, they have organizational smarts and they have music smarts and sports smarts and social smarts. And it's possible for them, especially our kids that have these really variable profiles. It's very possible for them to understand the high level, let's say physics and then not be able to find any of their work. So that's very confusing to kids.

Dr. Emily King: I mean, it's confusing to some adults who don't totally understand it. So I often will start with parents and kids helping them think about what does a physical disability look like in terms of maybe a child with diabetes that needs an insulin pump or a child with cerebral palsy who needs a Walker or even glasses, a child needing glasses. So any physical or medical condition or disability that kids can see. And then explaining some of our abilities and areas of need we can't see because they're inside our brain. So we've got to really figure out how to understand each other. And it's amazing how kids start to then look at their siblings differently. They start to look at their classmates differently and realize, Oh, everybody has a different brain and they'll start to make comments. I've heard like, you know, so-and-so, gosh, they are so good at math and I, I'm going to go to them to get help because that's not my thing and it's normalized and I'm not. So It's just a part of the conversation.

Penny Williams: I think we're doing better as a culture with that. Slowly but surely I see more television where we have characters with different needs physical and you know, kind of invisible is what I like to call. ADHD or the high functioning autism. I hate the high functioning term. So really it's less obvious and more obvious autism. But we're starting to see, and sometimes, and this is a big criticism I see all the time, sometimes these shows really trump up some of the strengths and they're not real life. But I feel like still we're showing some of the struggles and we're showing more of the aspects of what ADHD is like or autism is like, or being in a wheelchair is like that, that we're still educating society as a whole in a better way. And we're still showing that everybody's not neuro-typical. No, we're all different colors. We're all different abilities where just this melting pot and that, that's a good thing. Right?

Dr. Emily King: Absolutely. And I, I try to help kids understand, I mean it's like the old saying, you know, wouldn't life be boring if everyone were the same? But it goes way beyond that. And like we will progress as a society even more if we can lift up people that have these great abilities, but they're not going to be able to get there if we also don't support their needs and the things that could be holding them back as well.

Penny Williams: And I think lifting up things that we don't right now label as great abilities. You know, there's a lot of abilities that really contribute to your society or contribute to others that most people wouldn't list. As you know, this great ability, we think about great ability as being this genius IQ or a piano savant or, you know, and so I think when we start thinking about the little gifts of everything, it makes such a huge difference. Right?

Penny Williams: Absolutely. Let's talk a minute about the consequences of not sharing the diagnosis with our kids or the differences, you know, not that we have to say you have ADHD, but we have to talk about their struggles and why they're struggling. That it's not that there's something wrong with them.

Dr. Emily King: Right. And I think this is really hard for lots of families because they're, they're scared they're going to say something wrong. They're scared that they may end up shaming their child or making them feel less than there's, you know, still a lot of big feelings around labeling my child. Should I label, should I put that word on it? So first I will explain that there are instances where it is beneficial to teach kids that this combination of strengths and needs that you have has a name. Whether that's autism spectrum or ADHD.

Dr. Emily King: Most kids are pretty familiar with anxiety and being able to understand, I just have more anxiety than my friend does. Because part of the growth and their identity formation, late middle school, high school is being someone with neurodiversity. So if they have autism, then it's going to be important for them to embrace that so that they can go into a meeting with a teacher or a job interview one day and possibly be honest about these are the things that I am great at and these are the things that you may notice are hard for me, but that's not going to stop me from doing this job. And some of the consequences I would say is when we don't embrace some of these terms to help kids, they look at us and they don't embrace it as well. So, you know, I think I see less of it now, but a while ago there was a push not to ha even get an IEP for your child or not have the autism label on an IEP, but try to do it under OHI or LD.

Dr. Emily King: And I see less and less of that. I do feel like those classifications under IDEA and getting an IEP are needed. If this child has autism, we need to teach them with that context in mind. If we don't, we're doing them a disservice. We need everyone to understand that. And I think some of the fears are that teachers will or people will view them as less than, but then if that happens, we need to just step up and say, you need to notice these high skills in here too. So we can keep advocating for our child. So I, I always worry about children not embracing their strengths and weaknesses if we have not embraced it and normalized it and talked about it early on because it does become usually a part of their identity. And if they haven't embraced it, they're usually trying to fit into a mold that's not them. And that sometimes can lead to sadness, depression, anxiety, social anxiety of trying to fit into a situation that they just don't have the skills for. And so it's a risk to then get towards adolescence and realize something is wrong with me and I don't know what it is. But if they're armed with that knowledge, they know what it is and they can advocate and start asking for help.

Penny Williams: That word context that you used is so valuable because that's really what we're doing. When we share with them their differences, their strings and weaknesses, their diagnostic label, whatever we choose, however we decide to approach that conversation, we're giving them context for their experiences for their emotions, for the way they're feeling about maybe being different from those around them. And context for something we all know just in the general sense of context is invaluable.

Dr. Emily King: Absolutely. And I think that we also need to validate for them depending on where they are and then their schooling. That school is very uniform. You know, we have a curriculum in the United States that is very uniform to yes, there are different levels of math and there are different levels of different classes, but the way it's taught, the size of the classes, the seven period day, they getting up early in the morning and middle school and high school, those are all experiences that are very uniform and we are, we don't have uniform brains. And so helping them know that yes, most people might fit into that model, but not all people. And that's okay.

Penny Williams: Yeah. So important. And then you know the word normalizing. So it's almost like step one is giving them context. Step two is really normalizing what they are struggling with, what is happening for them and then they're able to understand and advocate, it feels like building blocks to me for sharing this information and making it accessible to our children in a way that they can use it to their own benefit.

Dr. Emily King: Absolutely. And I'll just add that sometimes I'll coach families to use some visual aids to draw out A Venn diagram is my favorite visual aid just because it's clear and it has overlapping circles cause we are not all one thing and it can help kids know that my, I have abilities in this area and this area and this area and that they all overlap. And that to me in the middle because a lot of times children with short attention spans or lots of lots of visual learners. I'm on the autism spectrum and it can be helpful to ground them and okay, so I see that right now, these are my skills and these are things that I need extra support on, but that this, I get it now. This is why it makes learning hard when I have to go do that thing that's mostly in this area that mostly pulls from this area that's hard for me. And then I can see why I really liked that class where mostly pulls from the things I'm really good at. And it just gives them more clarity and understanding the different areas and how they overlap to become what we would call Diversity.

Penny Williams: And I have started really talking about the parts of the brain and what is really going on, you know, anxiety or being really emotional and not being able to kind of get out of it. We talk about the amygdala hijack. We talk about even the Vegas nerve and you know, your body's response. We talk about dopamine on a simplistic level, but I've really just started putting that science into it too because I think it just enhances their understanding, but it also shows them that it's not something that's a choice for them. They are not necessarily in control of what is happening. And that I think is a real relief for them in many instances.

Dr. Emily King: Absolutely. They have permission now to say it's not my, this isn't my fault. This isn't something I'm doing that's making it hard for me. This is how I was wired and that's why I'm good at this and that's why I need extra help with this. And I I mean, once kids are in late elementary school they absolutely love the scientific terms. So I will use their different kinds of there's some great children's books. I can give you a few ideas. We can put in the show notes, but there's some great children's books, my favorite is "my fantastic elastic brain." And it just has a very general picture of the brain and you know, the basically in five or six areas and, and talks about, you know, how the cerebellum is helping with balance. And then, you know, of course the amygdala and the kids are always like, the amygdala is that tiny. I'm like, yes, it's really tiny because they feel that when the most, and then helping kids understand that your frontal lobe doesn't fully develop until you're in your 20s. And they're like, Oh my gosh. So I'm validating for them that that's why they need the extra support. And that's why some of their friends can do things that they might not be able to because their brains are developing all at different rates, just like they're different heights and sizes. Especially throughout puberty.

Penny Williams: I love that analogy. That's something that's easily grasped even by young kids. Well, you're all different sizes even though you're all years old, you know? That's so that's valuable in the conversation for sure. I want to switch gears a little bit and talk a little bit about how as parents, when we are overwhelmed by ADHD, when we are overwhelmed by big emotions, frustration you know, just in flexibility from our kids, all of these things, school struggles it can take over if we let it, how do we work on focusing more on strengths and abilities when we're feeling very overwhelmed by all of the struggle?

Dr. Emily King: I like to think of children's abilities kind of in three different categories of like they're mastered skills and then the lagging skills and then in the middle is what I call often the learning circle. And so to compartmentalize it like that kind of helps us let go, okay, they've got these things so I don't need to support these things anymore. They're nowhere close to having these skills developmentally yet. So I'm not going to worry about those yet. And then the learning circle of, okay, what are we focusing on right now? And I'm planting all of our energy into those skills and then coordinating with the child's team of how are we supporting these skills? Because they're still forgetting this or they're still melting down at this trigger or we still can't get through the morning routine so that we can focus on really prioritizing what are the most stressful parts of the day because the most stressful parts of the day for us are likely always the most stressful parts of the day for them.

Dr. Emily King: And so there's probably a breakdown on the skill and also leads to of course a breakdown in the relationship, but everyone's frustrated so we'd have to regulate ourselves first and make sure we as are getting enough support ourselves, which is something we also don't talk about enough and could good on off on another tangent, but we need to make sure we're getting our therapy and we're getting enough social interaction and we're getting enough rest so that we can come together when it matters to help coach our kids on the stuff that's in that learning circle and just focus on those things too, to just try to streamline some of the process because kids are moving targets anyway. And then neurodiversity in a child is like I say like it's like a moving target, going up a staircase. It's like one step forward, two steps back and it's moving. So it's really hard to figure out, okay, today this is what we're working on. That might be different tomorrow because we're tired and hungry and then the next day might be different because we're well rested and we're excited about the vacation. So many different variables and that makes it inconsistent. We have to remember that, what's our goal for today?

Penny Williams: Yeah, I love that because we tend to want to fix it. We want it to tackle everything all at once. And it was certainly the way I was when my son was first diagnosed and I was putting so much time and so much energy and so much research and into figuring it out for him and helping him and I was looking for all the wrong things. And so I was doing all of this work and nothing was getting better really. And it was because I was trying to fix it and I was trying to do it all at once. And so no small amount of effort and all of these different places was really making a difference. The other big piece I think too, and something that I discovered years after diagnosis just the last few years, is that we have to really accept what is as parents, right?

Penny Williams: And that's a journey. It's a process. It takes work, it takes working through your own feelings and emotions, but once we're able to accept what is and we let go of that minutia that really doesn't matter for our kids, who our kids are on our journey and their journey, we free up so much more time for positive, for joy, for working on strengths and nurturing passions and interests. And you know, and it's not a switch that a parent can flip, but it's something that you have to be aware of so that you're doing the work and you're working on getting yourself to that place so that then you can prioritize and feel good about it. You can say, okay, this skill is something that we're not anywhere close to yet. Let's put it over on this side. Let's park it and work on some things we can work on right now and make a difference. And there's a lot of emotional work and mindfulness that goes into that from the parent.

Dr. Emily King: Exactly. And every parent is on their own journey. And the irony of the name of my blog is that it is our journey, but really it becomes our child's path. And we're just following along. And once we become the ones who are kind of pushing the bushes out of the way as we're hiking and trying to get to the next thing, but really they're the ones with the compass and they're the ones that we're really following them on this path. And it's so important for us to recognize our own journey with that because it will be harder to talk to our kids about their differences if we haven't accepted them yet. And so our kids will feel that probably. And so for many parents it will take, you know, going through therapy and letting go of a dream of a family or an idea you had in your head about something that was going to happen with you know, mother and daughter or mother and son and working through really a grief process.

Dr. Emily King: And I have a great guest blog post called, I believe it's called on acceptance, but it's about grief and apparent road at going through the stages in retrospect of noticing the stages of grief and acceptance and that everything was better when they got to the other side of that everything was better because the energy they had then to support and coach and really encourage their child was so much higher because they let go of all the energy they were spending resisting and trying to change and try and, and feeling sad, which is a process we can't flip it. It's a process that has to happen to us as parents

Penny Williams: And that acceptance of our kids is really valuable in how well they're going to be able to do. I mean that's part of our job of creating, helping them create this adulthood, this life where they can find success and happiness, whatever that looks like for them. And when we're constantly pushing against these struggles and constantly talking about them and raising them, you know, it just creates this very heavy dynamic in your house and your family. Whereas when you work through that and you really get to the other side of it, like you're talking about it, I mean the best word for it is freeing. I feel like such a different person. And while my intention was always to really help my son and really, you know, take away some of his pain, take away a struggle, the fact that that wasn't wholly possible was really holding everyone down and really weighed us down.

Penny Williams: And that acceptance then just creates a whole different dynamic and, and the way mom feels or the way dad feels is going to rub off on everyone in the house. Absolutely. You know, you think about your friend who's negative Nelly and sometimes you just don't want all that negativity and you're, you know, you're not going to dinner with that person, that friend this week or whatever it is. It's the same if you're the parent and you're walking around the house and your constant negative Nelly, your kids are feeling that it's affecting them in a big way that's not positive.

Dr. Emily King: Absolutely. And I often will say, I think parents of children with any kind of disabilities are some of the most enlightened and authentic people on the planet because they've been forced to go through this process. And eventually everyone does get there. Some paths are slower than others or are faster than others. Some parents hear diagnosis and they're like, okay, let's go, let's do it. But you know, all parents go through a shift in, you know, Oh, well my child didn't go to the college I thought they would go to or they, you know, don't, aren't playing the sport. I thought that I would want them to play, you know, in a very mild and to many parents with kids with disabilities, somewhat irritating framework. But that is, that's a similar path. It's just, it's much more extreme for parenting children with disabilities and those parents get there faster or more authentic, embrace it and they're totally enlightened. I mean it's, it's a great, it's a free, like you said, a freeing way to feel.

Penny Williams: Very empowering. And then when we feel empowered and then we're giving off that energy and you know, I think, and I used to be this person too, I thought that thinking about energy, it was so hippy dippy and you know, new age stuff. But when we think about it and then sense of our emotions and the way we're thinking and feeling and the fact that that conveys, even if we don't use one word, it still conveys to the people around us. That's what I mean by the energy. And it really does start with us as parents.

Dr. Emily King: If we present this conversation to our children about their abilities and their, and their strengths and their needs. And if we present it in a a way that we feel sorry for them or we feel like this is bad news but it's going to be okay. That's a vibe we're sending off that we want to embrace the normalcy of, Hey everybody has a different brain and we have figured out how your brain works. So this is good news and we want to teach you about it and bringing them on board and letting them know this is what you're probably going to come across and when you do this is these are the helping people and we are your kind your consultants as you're growing up of what we're going to do together and we always need to be talking about this and solving these problems. And that is the kind of energy that can be really helpful in these conversations.

Penny Williams: Absolutely. We have shared so many aspects because this really is a complicated topic. It really is hard to know what to do, when to do it, how to do it in a way that empowers our kids instead of making them feel bad or broken. And so it is a complex topic but I think we've touched on many aspects of it that are going to be so helpful for parents who still haven't had this conversation with their kids or you know, parents who have but maybe now think, Ooh, if I could talk about this with them too, that would be helpful.

Penny Williams: For everyone listening. You can access Dr. King, her website blog, lots of different things. Social media will all be listed in linked in the show notes for this episode and those are at parenting, ADHD and autism.com/zero seven eight for episode 78 and again I thank you so much for being here and sharing your thank you for having me. And with that we will end this episode and I will see everyone next time.

Speaker 2: Information provided by Dr. King is intended for informational purposes only. It is not intended to diagnose or treat any mental health condition or to provide psychological services directly to clients. Listeners are encouraged to seek the advice of a qualified mental health professional with any questions or concerns. Thanks for joining me on the parenting ADHD podcast. If you enjoyed this episode, please subscribe and share and don't forget to check out my online courses, parent coaching and mama retreats at parenting, ADHD, and autism.com