Dyslexia: More than mixing up letters

When kids have trouble learning to read, families may wonder about dyslexia. But what exactly is dyslexia? And what are the signs to look out for? 

In this episode, hosts Gretchen Vierstra and Rachel Bozek talk about dyslexia with Dr. Gabrielle Rappolt-Schlichtmann. Gabbie is an education scientist who works to make education more inclusive to kids and adults who learn and think differently. She’s also dyslexic, and the parent of a third grader with dyslexia. 

Tune in to learn some of the early signs of dyslexia, and why it’s never too late to get a diagnosis. Find out how to work with your child’s school to get support, and what reading strategies work best. Plus, hear why Gabbie would never want to be “cured” of dyslexia, even if she could be. 

Related resources 

• What is dyslexia?

• 7 common myths about dyslexia 

• How to teach kids with dyslexia to read 

• The legit fear behind “Please don’t call on me to read”

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 raising two kids with ADHD. Today, we're taking a deep dive into dyslexia, what it is, what it isn't, and how to support kids who have it.

Gretchen: And we have the perfect guest here to help us with that. Dr. Gabrielle Rappolt-Schlichtmann is an education scientist and the executive director and chief scientist at EdTogether, an organization that works to make education more inclusive to students who learn and think differently.

Rachel: Gabbie is also someone who herself has dyslexia, and she's a mom to a kid with dyslexia. She talks about all that with so much insight and clarity, we're so happy she joined us for this conversation. So, Gabbie, welcome to "In It."

Gabbie: Thank you for having me. I'm excited to talk with you both today.

Rachel: Well, to start off, I wonder if you could tell us a little bit about yourself and in particular your work as it relates to kids who learn and think differently.

Gabbie: Sure. So, I'm an applied developmental psychologist, and I've been working with schools and teachers, education professionals, museums — basically, wherever learning happens — to help them to be inclusive to kids who, and adults, who learn and think differently in designing learning environments.

And I want to start off by saying, even though I work with and think about and design environments for all kids who learn and think differently, dyslexia has a very close place in my heart because I'm dyslexic and I am also the parent of a third grader who is dyslexic and has ADHD. And so, I do think about that. I think a lot more in my personal life and my personal experience in addition to working with schools and in educational environments.

Gretchen: So, as you know, we invited you here today to talk about dyslexia. So, let's start with the basics. Gabbie. I think probably the most common myth we hear when it comes to dyslexia is that it's about reading and writing letters backwards. Is that what dyslexia is?

Gabbie: No, definitely not. So, when we think about dyslexia, it really doesn't have anything to do with flipping letters around or anything like that. It's a brain-based learning difference that affects reading, writing, and spelling. So, people who have dyslexia have difficulty basically working with language is how you can think about it. So, they may have difficulty isolating the sounds within words or matching letters to the sounds. Like, for example, you might have difficulty mapping the sound "to" to the letter T or the sound "tho" to the letter Th. And when you have difficulty with that, it can really affect your ability to deconstruct words as you're trying to read. And that affects reading, and it also affects your ability to spell and produce language as you're trying to write.

It tends to run in families, like in my family. So, my son's dyslexic, I'm also dyslexic, and my father as well. And it really has nothing to do with intelligence. It's really important to understand that. It's just really about how your brain handles language as it relates to text, but it doesn't have any meaning to how intelligent you are.

Rachel: So, were you kind of on the lookout for it, knowing that it runs in families and knowing that you yourself have it, you know, so with your kids, was that something that you kind of had an eye out for?

Gabbie: Definitely. And my son is actually my second child, but we were on the lookout for it, and they popped up for us when he was in preschool. It felt like he was randomly — when we would talk about the alphabet or letters, or I would read to him — it almost felt like he was sort of guessing or randomly saying what letter went with a sound. So, I kind of had a clue that he was going to have some difficulty. And then, in fact, by the time he got to kindergarten, he was really struggling to get anything out of the reading instruction that was happening in his classroom.

Rachel: You know, one common belief is the idea that you can't diagnose a child with dyslexia until they're in elementary school. Is that true?

Gabbie: No, absolutely not. In fact, oftentimes we refer to that as the sort of waiting to fail approach. So, absolutely, by the time kids get into elementary school, when they're in the thick of reading instruction, you're going to see difficulty if a child is dyslexic. But way before that, when they have first exposures to anything about mapping the symbols of language, to the sounds of language, you know, doing things in a sequence, really that idea of thinking about working with language, if they're having difficulty with that, it's a clue that they might have difficulty. In fact, you can screen kids as early as preschool for difficulty with that.

And with my son, because he was having difficulty, I can remember — he's in third grade now — but we went in to see his teachers for a conference and, you know, they were like "Kids develop at different rates and let's just give him time." And I thought, you know, there's no harm in having direct, explicit reading instruction, right? So, let's just do it. Why wait for him to fail, you know? And I did actually have to I don't know if this is the right word, but escalate it to the head of the preschool, because I was getting a lot of pushback from the teachers. And when I talked to her, I just said, "You know, I'm dyslexic, my dad's dyslexic. He's not responding to reading instruction. I don't think any kid gets sad or upset from getting competence with a skill. So, let's get him some, you know, instruction." And they did. They were very responsive up to that.

Gretchen: I like that idea. I like to say, "You know what? No matter what, this is confidence-building, right? To get these extra skills in place." So, you know, you mentioned a few of the things that families or teachers could be looking for when kids are really young, you know, thinking about a parent at home, what would be a very like easy sign to maybe bring to the teachers and say, hey, could there be something here?

Gabbie: Sure. So, I think a lot of times as parents, we do nursery rhymes with kids or maybe singing songs with kids where there's rhyming. And if you're noticing that your child's having a lot of difficulty with rhyming or sort of not picking that up or seems like they're guessing you might probe like in a fun game, you know "What rhymes with cat? I'm thinking sad," you know, sort of going back and forth. And, you know, a lot of kids have difficulty with these things. But if it's popping up along with when you're sort of introducing a letter to a child or something like that, and maybe they have difficulty following directions in a sequence or something like that, that would be a sort of constellation of things to raise to a teacher.

Rachel: So, is there an optimal age for a child to be evaluated for dyslexia or, you know, I mean, we talked a little bit about it can be as young as preschool, but is there kind of like an ideal age or is it really about when you see the signs?

Gabbie: Yeah, I think the answer to that is it's never too late. Absolutely not. And I'm a good example of that. I didn't have a diagnosis until I was in ninth grade.

Rachel: Oh, wow.

Gabbie: And I'm a very good example of, you know, a girl who's not identified because I was doing well enough. So, the teachers were sort of saying, "Well, it's fine. This is just who Gabby is. And then I had an English teacher actually in the ninth grade, who was like, "Wow, I would really.." based on our classroom discussions and, you know, how smart this teacher thought that I was, he expected more from my writing, And so, he asked to see a rough draft in my handwriting, and the spelling was so bad, he was like, "I can't read this. Let's figure out what's going on."

And then I was finally evaluated and I got my diagnosis. And it made a huge difference to me in terms of the direct instruction — really remedial instruction that I had around reading specifically — but also the accommodations that I received in school, which allowed me really to excel in areas of interest like science and math. And in fact, I went on to college and majored in neuroscience and my job now it's like 80% reading and writing.

Rachel: Right.

Gretchen: So, then your ninth-grade teacher noticed these things. It took up until them. I'm wondering if you had a sign, if the teachers didn't have one, did you have one inside and wonder what was up?

Gabbie: Oh, yeah. And my mom is actually a special education teacher.

Rachel: Got it.

Gabbie: And she knew, she knew what was going on and she was teaching me at home, basically. So she was, you know, reading with me. I can remember spelling tests in elementary and early middle school where we would start on Mondays and just drill through them. And I would still barely pass after hours and hours. I can remember having homework where I, you know, had to fill out a workbook, and I can remember becoming so frustrated I actually threw the book across the room in a sort of fit of anger. And I was very calm, self-regulated child. So, I think for me I just thought, "This is what learning is" until I had that teacher.

And it was like this real relief for me being evaluated and having the label, because I think sometimes people worry that the label is bad or can affect you in a negative way. But for me, it was a complete relief because it was like, "Well, you know, you just learn and think differently and your teachers aren't teaching the way that you need to learn. And there are some things that we can do now that we know to make this a way easier lift." And it was absolutely true.

Rachel: Wow. That is really amazing that, you know, you were able to get to that point without anybody really seeing it. But once you got there, what supports did you get, you know, and how did they help?

Gabbie: Yeah, I want to say first to that, as a professional in the field, you know, when I work with middle school teachers and high school teachers and sort of helping them think about kids with dyslexia, kids with other learning and thinking differences, I'm often incredibly surprised at how little they know about their kids reading levels and that they tend to make assumptions about everybody being able to read when they're sitting in like, say, a history classroom or a math classroom, and making assignments without looking into that, especially if a child doesn't have an IEP yet.

So, I think it is important to know that by the time you get past fourth grade, most teachers aren't thinking about teaching reading, they're thinking about their content area instruction. And so, they may not be aware of where your child's specific reading skills are or writing skills. So, in terms of accommodations, I would say for me it was mostly about being able to listen to my texts across the curriculum.

So back then, this is a long time ago now, I used to have books on tapes, so my textbooks on tape, but now, of course, we have digital support, so you can get basically any text, any reading that you need to, including things that are on paper like worksheets. You can use accessibility, accommodations, and features even on your phone just to have things read aloud to you. And so, that's a pretty basic accommodation that was really important to me. In fact, now I still often because I'm so much more efficient at listening comprehension in my professional life, I listen to the texts that I read. Not always, but most of the time.

Another accommodation that I've used through college was doing speech to text technology, so where you can speak what you want to say in text and then editing through typing. I also had a lot of executive functioning support. So, you can think about executive functioning as being that sort of control center of your brain, that sort of set of skills that helps you to self-regulate and organize and figure out how much time it will take you to do something and be able to plan to get your work done. That was a huge thing for me. So, I had really explicit instruction and supports around, you know, having a daily planner and really learning how to chart and better guesstimate how long things would take me.

Rachel: Right. You know, reading instruction is such a hot topic. It was then, it is now. So, families might be hearing things like structured literacy, balance literacy or phonics versus whole language. When it comes to kids with dyslexia and really all kids who are learning to read. What does science tell us about how kids learn to read best?

Gabbie: Yeah. So, they really need explicit instruction about the code of reading. English is very, actually exists across languages, but let's just talk about English here. English is a very complicated language. It involves you learning one sound and then under a different set of rules. It makes a different set of sounds, you know. So, for kids who are dyslexic and many other kids as well, really explicitly teaching that sort of phonics-based, separating out, intentionally teaching systematically, the code of language is really important. And for kids with dyslexia, really doing it in a multisensory way so that you're taking different ways to get the information into your mind.

One approach that a lot of people talk about, that's evidence-based in terms of supporting kids with dyslexia to learn to read is kids actually trace letters with their finger in sand as they're doing the sound-related work and it's just a way to work on getting that idea into the brain through different channels. And then repeated practice. You know, kids with dyslexia are going to need repeated practice with a skill over and over and over again in many different ways, more times than you would ever expect that you would need that repeated practice.

Rachel: That brings me to my next question, because teachers always tell us from preschool all the way up. I mean, I've had sixth, seventh, eighth grade teachers even say it, that the best thing we can do for our kids is read out loud to them. So, does a diagnosis of dyslexia reflect some sort of failure on that front?

Gabbie: Definitely not.

Rachel: Good.

Gabbie: And it really goes back to that brain-based difference thing. You know, our brains are built for language, not for reading. And so, some kids, when they come to reading, have a brain that picks it up more easily. And other kids, you know, kids with dyslexia being one example, really need that explicit instruction to get their brain around what's happening on the reading side. So, it's nothing that you did. It's just the way I am. Exposure to text is always good because it's good for your relationship with your child. It's good for them to understand the utility of books and to be transported by stories or to understand like how they can get information from books. But whether you did that or not won't affect their ability to pick up reading, when you start getting into decoding and understanding the really, you know, the relationship between symbols and sounds.

Rachel: So, as you shared, you know, there's a genetic component to dyslexia. And so, if there's a parent or caregiver out there who is dyslexic and maybe they didn't get the supports to feel confident in their reading now, or they still find reading really frustrating, how can they read to or read with their child?

Gabbie: OK. So, this is a wonderful question, and you can absolutely get as much out of listening to books as you can from reading books to your child to listening to books together and then talking about the story when you're in bed together. I remember when my daughter, she was, I think, in fifth or sixth grade, I think fifth grade, and she really wanted me to read "Little Women" to her and I can read it, but oh my goodness, is my fluency slow with that. You know, the sort of older English and it was very tough. And I remember sitting in bed with her and she was like, "I can read it, Mom," you know? And I'm probably going to cry right now while I'm talking about it. It's a hard moment, you know, like, because she was, you know, beyond me in that skill.

Now, I can read a very complicated neuroscience text about dyslexia published in "Science" magazine. But I read it by listening, and reading a text like that is always going to be really hard for me. So, having her do that, I was like at the same time really proud and then also a little bit ashamed. But she just made it so wonderful for me in terms of being like, you know, "I want to read it" and us doing that together. So, that's also a good opportunity, I think reading together doesn't necessarily mean you reading to your child.

Rachel: And I love that you're sharing that, you know, audiobooks, listening to books. It's I feel like there's that myth out there that that's a cheat. And it's totally not.

Gabbie: Definitely not. And I think one big piece of advice I could give parents, you know, when they're sitting in IEP meetings and or thinking about their kids talking to their teachers in parent-child conferences, you know, by the time kids get to fourth grade, which is really that transition from learning to read to reading to learn, now your child might still be learning to read, and that's fine, but by the time you get to fourth grade, you really don't want all of their access to the content in the subject areas to be through reading in a traditional sense if they're reading below grade level.

So, it's like separating "I'm still learning how to decode the text at a certain level, and I'm learning to comprehend texts at maybe a much higher level. And so, I can do that through listening comprehension." So, that's one of the best things that can happen when you get into middle school and high school. If you have a child who's reading below grade levels and working is on that is to say, "Let's make sure that reading comprehension in subject areas is that they have access to listening to text."

Rachel: So, I've seen a statistic that one in five students has a language-based disability. But you certainly don't get the sense that we have that many students getting extra reading and writing support in the classroom. So, why is that? And what are the barriers to getting a diagnosis, if that's related to the reason why there's this kind of disparity?

Gabbie: I think there are lots of reasons why kids aren't identified. So, you know, resources is one thing in the schools. So, there's a kind of threshold to be screened and there are limits, a limited set of resources, amount of time in terms of the number of special educators that they have in the school. So, that sometimes plays out, you know, in terms of who gets identified, how many kids are captured in that net. You know, I think it's knowledge on the teacher's part.

General education teachers, so the ones who teach the main classroom, they might not know anything about dyslexia at all, might not have had any experience in their training, might have only had one class where they learned about all disabilities from teaching kids who are deaf to teaching kids or has autistic to teaching kids who are dyslexic. And that often sets up a kind of us and them in schools where it's like kids who have difficulty reading, that's the responsibility of the special education teachers and then everybody else's I'm responsible for, just because they don't know. They just don't know. There's a knowledge gap there.

And I think also sometimes parents don't necessarily know that they can have their kids evaluated or can advocate to have their kids evaluated in the school. And that testing can be free, is free in the school. You can always have a private evaluation which can be expensive and you have to wait a long time for. But you can ask to have your child evaluated and you are protected. Your child is protected under IDEA to be evaluated and to have services when they're warranted. So, there are lots of issues as to why those kids don't get services.

Rachel: And so, then if, let's say a kid gets missed and then they don't get a diagnosis and they don't get the support they need, how does this impact a person's future life? How does it impact, you know, upper grades of school to beyond if they don't get these supports?

Gabbie: Yeah. So, I mean, it can be really devastating. And I don't want to put it on the child because I really believe, you know, in my work we make choices, how we create schools, and the ways that we teach.

Rachel: Yep.

Gabbie: And there's absolutely no reason why all kids couldn't be getting direct, explicit, systematic multisensory reading instruction, because then we would capture all the kids in the general classroom. But unfortunately, that's not the way most schools are set up. And so, what ends up happening is kids fail and then they get separate, explicit reading instruction as an add-on.

So, I think when you don't have that and you're not reading on grade level, it really affects your ability to participate in any aspect of the curriculum. So, being able to learn about history, learn about science, and about math, even if you might be gifted in those areas because so much of the way that we construct school is through reading. Yeah, like if you think about math, you get a math textbook, right?

Rachel: Yep. You read a word problem.

Gabbie: You get a word problem, you're doing a proof. You have to write the proof, right in geometry. So, we really use reading and writing as a medium for instruction and for learning. It doesn't have to be that way, but that is how we do it. So, it can be really devastating for kids. And on an emotional level, I'm doing a bunch of work around stigmatization and how it affects kids with learning differences. Their perception of themselves and literacy is so important to our culture that when a person presents as not literate, they feel almost as if they're less than human, right? Because it's like this skill that we all assume that everyone has within our culture. And it's like, "Well, why can't you do that?" You know?

And so, it's like this experience of dehumanization that happens if you can't read. And so, yeah, if you feel like it's being missed, if you have a concern about your child, if you suspect, you know, get in there and ask questions and you might get pushback. But I think, you know, no child was ever harmed by having an evaluation and getting extra support, really.

Rachel: To be super clear about this, can a child or anyone who's been diagnosed be cured of dyslexia?

Gabbie: No.

Rachel: I'm using the word cured or doing air quotes, but also, you know, can we make it go away?

Gabbie: Yeah, you cannot make it go away. It is literally a brain-based difference in how your brain processes and works with language. There's some evidence that as you get intervention, your brain does change. You know, the brain is classic. It does change in response to intervention. But when we look at that, it's mostly about when dyslexic people learn to read marshaling other areas of the brain to help them to do that. So, you can change in response to intervention. But no, it's not going to be cured.

And OK, I might I'm going to say something a little controversial now as an adult with dyslexia, I'm not saying that it was easy. It was really tough to be in school and to go through schools that weren't really like fit for me as a person and that I had to figure out how to navigate, you know, with support. It was really hard. And I have a lot of privilege as a white person and a person who is resourced in terms of my parents being able to get me extra support. So, I don't want to like reduce that.

But I do want to say, looking at my life now and who I am, I wouldn't want to be cured of dyslexia because it makes me the person that I am. And what's interesting is if you look at the research literature, even the brain science literature around dyslexia, that there are actually lots of other differences in the brain. Everyone's focused on reading because that's the biggest challenge, because the schools aren't set up to support kids who are dyslexic. But there's actually this other really interesting research literature that's just getting going, that's looking at, "Well, do kids with dyslexia have advantages in visuospatial processing?" So, for example, people who are dyslexic when they get through school are actually overrepresented among astrophysicists.

Rachel: Wow.

Gabbie: And you may be like, why is that the case? Well, it turns out that people who are dyslexic tend to be better at picking up patterns from a visual field. So, like pattern recognition, like being able to look at a star chart and recognize a black hole and things like that.

Rachel: Something I could never do.

Gabbie: Yeah. So, I think there's lots of things about being dyslexic that are advantages that maybe make up the kind of person that you are. That also comes with negatives, you know, in terms of the reading in the way school set up. But doesn't everybody have a mix of those things?

Rachel: Totally.

Gabbie: So, even if it could be cured, I wouldn't want it to be because it makes me who I am.

Rachel: And that's such a great thing to be able to communicate to kids who maybe find out like, "Oh, you know, I have this diagnosis now. Now what?" You know, for parents and teachers to know that, you know, these are some things that they can maybe share with those kids. You know, as a super positive.

Gabbie: Absolutely.

Rachel: Gabbie, thank you so much for sharing everything you know and your personal stories. It's been just such a pleasure.

Rachel: I have learned so much today. And also, I really appreciate you busting these myths because some of them I really didn't understand were myths.

Gabbie: Thank you both so much. It was really fun to talk with you today.

Rachel: Before we go, we have a favor to ask. On this show, we talk a lot about finding joy and celebrating successes when it comes to raising kids who learn and think differently. But what about the fails.

Rachel: Oh the fails!

Rachel: Yes, the fails. Let's be real! We all make mistakes. So, let's bond over those kinds of moments, too.

Rachel: I have no idea what you're talking about, but. OK, I do. So, I think we're talking about those days when we are so exhausted, so fed up, we find ourselves saying or doing the total opposite of what we think a good parent or caregiver would actually say or do.

Rachel: Totally. Like, maybe you just lose it after your kid spills juice everywhere again.

Rachel: Or maybe you set a limit, even though you know there is no way you're going to stick to it. I mean, not that I've ever done that, but it's probably something to watch out for.

Rachel: Yes, you are not alone. So, let's laugh and maybe cry about these all too human fails together. If you have a story to share, send us a voice memo at InIt@understood.org. Tell us how it started, what you were thinking and feeling, and how it ended. If you'd rather send an e-mail, that's fine too. You can also send that to InIt@understood.org.

Rachel: You can be anonymous or use your first name. Just know that submissions may be played or read on the podcast and thanks. We can't wait to hear from you, and we can't do this part without you.

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

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Rachel: "In It" is produced by Julie Subrin, and Briana Berry is our production director. Justin D. Wright mixes the show. Mike Errico wrote our theme music.

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