Podcast: Decoding and Demystifying Dyslexia
Jenn talks to Dr. Roberto Olivardia about what dyslexia is and steps parents and caregivers can take to effectively support their children. Roberto explains what causes the challenges in learning to read and spell written words, shares ways to recognize the signs of dyslexia, provides tales from personal experience to help with condition management, and answers audience questions.
Roberto Olivardia, PhD, runs a private practice in Lexington, Massachusetts, where he specializes in the treatment of body dysmorphic disorder, obsessive compulsive disorder, ADD/ADHD, skin picking disorder, and males with eating disorders. Dr. Olivardia also treats patients with other anxiety and mood disorders.
Jenn: Welcome to Mindful Things.
The Mindful Things podcast is brought to you by the Deconstructing Stigma team at McLean Hospital. You can help us change attitudes about mental health by visiting deconstructingstigma.org. Now on to the show.
Hi, folks, good morning, good afternoon, or good evening to you wherever you’re joining us from and whatever time you’re joining us. But first and foremost, thank you for joining us for “Decoding and Demystifying Dyslexia.”
I’m Jenn Kearney, and I’m a digital communications manager for McLean Hospital. And I am joined today by Dr. Roberto Olivardia. And dyslexia is actually really common, more common than most people realize, it impacts nearly 10% of the population.
And with a diagnosis of dyslexia, whether it’s your own or someone else’s that you know, it can be frustrating to a lot of people.
Many folks with the condition may see words, letters, or possibly even numbers differently, and if unaddressed, it doesn’t just impact their reading, but can affect other learning abilities and even their self-esteem.
So today’s chat is going to be all about how to make dyslexia, which is a pretty complex condition, feel less complicated to everybody involved in its management, whether it’s your management or somebody you care about.
If you are unfamiliar with Roberto, you are in for the most wonderful hour of your day and plenty of pleasant surprises. So Dr. Roberto Olivardia has been treating patients for the last 20 years since his internship at McLean Hospital.
He runs his own private practice in Lexington, Massachusetts specializing in the treatment of body dysmorphic disorder, obsessive compulsive disorder, ADD/ADHD, skin picking disorder and males with eating disorders.
But he also treats patients with other anxiety and mood disorders as if he doesn’t already do enough for us. And if you love what he has to say today, little shameless plug, I would recommend checking out our session where we chat all about ADHD as that was one of my favorite chats to date.
So Roberto, hello, thanks for letting me go through my whole schpiel. I am so glad to see you again. And I just want to kick this off by getting right to the chase. So what exactly is dyslexia and where does it occur in the brain?
Roberto: Great question. So first it’s great to be back with you, Jenn, and I really enjoyed our ADHD chat. And this is one, I think it’s so important to talk about because learning disabilities are not clinical disorders, so they’re not a mental health condition.
And yet it’s so important for providers who are working with patients who have learning disabilities to understand the impact that that might have, and then for people out there who are educators, who are parents or people themselves who have dyslexia.
So I’m going to read first the formal definition from the International Dyslexia Association, which is the main organization in this country that really supports and gives information and advocacy around dyslexia and I’ll share other resources. And then I’ll unpack the definition.
So dyslexia is a specific learning disability that is neuro-biological in origin. It is characterized by difficulties with accurate and/or fluent word recognition and by poor spelling and decoding abilities.
These difficulties typically result from a deficit in the phonological component of language that is often unexpected in relation to other cognitive abilities and the provision of effective classroom instruction.
Secondary consequences may include problems in reading comprehension and reduced reading experience that can impede growth of vocabulary and background knowledge. So that’s a formal definition. I want to sort of unpack that a bit as to what we’re really talking about.
So dyslexia is a language-based learning disability. That basically, if we start with the idea of phonological awareness, and when we read, we learn that the letter b is attached to a certain sound, ba. We learn that the letter f has fa.
And we have all these sort of the phonemes of language. And what we know about dyslexia, people who are dyslexic is that that automaticity of that sound to symbol, it takes a lot longer, it’s a lot harder, it’s more difficult.
The brain is not automatically, it’s learning that the b is a ba sound. It might think that the b is a da sound or some other sound. So now at the phonemic level, if we’re not having that sort of automatic awareness, now what happens when we put three phonemes together.
So we think of the word cat, it’s really made up of three phonemes, c, a, t. And so you have to automatically know the sounds of each of those letters. And then we put those sounds together to make cat.
Now for someone with dyslexia, they could be like s, c, s, a, t. And now as a result, when you have that problem with phonemic awareness, now the ways we learn language, for example, if you understand how to read cat, you then probably could read any other word that has at.
If I say, take away the c and put a b, it’s bat, put an f, fat, put an h, hat. That sort of rhyming part, to someone with dyslexia, it’s like a whole new word because they’re not looking at...
So if you see, they finally say the word cat, you introduce hat, it’s like h, a, t, like they have to really like sound it out and break it down. The brain is not taking a sort of whole word sort of approach, so that automaticity.
So a lot of how we learn language is there are these certain rules and principles that we learn. People with dyslexia, I’ll talk in a second about the brain of why this is, have a much harder time doing.
And then you have words that are called like, the sort of not the pseudo words, like the word the, for example, really doesn’t follow a lot of phonemic awareness, otherwise, we’d say thee for the word the. Certain words like of, O-F, it’s like how is that of, as opposed to off.
These are words that we just have to learn and just have to memorize. People with dyslexia have a very, very hard time with that.
Going back again to the rhyming, one of the things I often recommend is like Dr. Seuss books are great because they’re fun and they can be really silly and cool, but they’re also really, really good books for reading, because a lot of the words that Dr. Seuss uses are nonsense words, but he’s using phonemic principles.
So he might say the zlink is in the sink with the bink in the fink. And they’re, like with the exception of the word sink, they’re nonsense words. But if you can read one of those words, as long as you know how to read the alphabet, you can get all of those other words.
So dyslexic kids have a very, very hard time with Dr. Seuss books. That’s often actually can be one of those indicators that I often say to parents might be worth checking more into.
The other thing is that with dyslexic individuals might have a hard time with syllable segmentation. So we see the word teacher and our brain, our non-dyslexic brain might say tea cher, teacher.
But what if we put that word and we divide it at teac her, now it’s teac her, which is a totally different word. So many dyslexic individuals will say words that other people might be like, “What? Why are you saying that?”
But it really is just where their brain is telling them that syllable segmentation should belong, which then becomes a whole other word. Dyslexia also affects spelling.
Spelling is typically very phonetic. So a lot of dyslexic individuals... And this is something that really doesn’t, even with remediation often doesn’t get better so to speak even into adulthood.
A lot of things can, which we’ll talk about, but in a lot of ways, frankly, and I could talk sort of from a personal level too, as someone who most likely had a mild dyslexia when I was younger, I have a son with dyslexia and ADHD.
I always found phonetic spelling quite easy to read actually, but to someone else, because you’ve been taught sort of these principles and they’re embedded, but dyslexics writes often in a way that word sounds, so the word knife might be N-I-F-E or N-Y-F-E, because that looks like knife.
What is this kn? What is that deal? And to understand, even in our evolution, reading is pretty new overall in our evolution.
So in some ways it’s kind of amazing and complex that people sort of just learn, we learn this thing of how to read, but that’s in a nutshell, we could sort of unpack that more, but that’s what it is. And it’s not related to intelligence at all. It has nothing to do with intelligence.
And what we do know is it is neurobiologically-based and genetically-based. So what we know about the brain is that with a person who’s not dyslexic, there are basically three parts of the brain that get activated when someone reads a word.
There’s what we call the Broca’s area, which is the more frontal part of the brain, sees a word, it starts to analyze that word.
But then it sends information to the parietal temporal lobe, which then analyzes that word, might make associations, look at principles of that word, sends it further to the occipital temporal lobe, which almost has a picture of the word.
In a sense it’s like, “Oh, I’ve seen that word before, that looks familiar, or I’ve seen a word like that, I’ve seen hat. So the word cat is similar to this word, and it can put it all together.”
With a dyslexic brain in these neuroimaging studies find that that Broca’s area is activated, but it’s not sending the signals to those other two areas. So now a person is like, it’s almost like they’re on this bridge that’s not very sturdy. And they have to almost reacquaint themselves.
I remember when my son was in kindergarten and he would read a sentence and the first indicator was he saw the word the, he was like t, t, he. And to t, he, we’re saying it phonetically, and I said, “Oh, that’s the word the.”
And literally three words later was the word the again. And this is a kid who had scored in the 99th percentile, we found out later in vocabulary, and he saw and it was the and he just didn’t know the word the, and that was the first flag for me.
We also know that it runs in families, that if someone who’s dyslexic, there’s a 25 to 50% chance that they have a biological parent that has dyslexia or a sibling, or it’s in the family, much like when we talked about with ADHD, that dyslexia runs in families. So that’s sort of a nutshell of what it is, but I’m sure we’ll unpack it even further.
Jenn: I couldn’t help but notice that I, you can correct me if I’m wrong, but did you say that you had dyslexia, a mild form of dyslexia? So is this something that you could actually outgrow or is this lifelong that requires constant management?
Roberto: Yeah, that’s a good question. I say that in the sense that I think it’s still sort of with me, I think in ways that I just compensated a lot for. I never liked to read as a kid.
So reading, I remember even as a kid, I’m like, “I’d rather write a book than read one.” And having ADHD definitely complicates that.
Like I remember even in high school, that was pretty funny that I had to read this passage and the line said he howled at the moon, and I read it, he howled at the moon like a lunatic. And I was like, “What’s a lunatic? I’ve never heard that word before.”
I was a bit of a class clown. I was not meaning to be funny. And my class started laughing, and my English teacher who already was annoyed with me on many other levels was like, “What did...” And I was like, “I’ve never heard that word.” And she goes, “It’s lunatic.”
And it was literally like somebody just shuffled the letters and it just became a new word to me. I was like, “Oh.” That still happens to me. I mean, like where I’ll see a word... Like I saw the word Africa recently and I was like, “Africa, what’s Africa? Africa.” It’s like kind of funny.
But I got by, I did have a hard time reading like word to word to word to word. I’d sometimes skip words around. When I say had meaning that it hasn’t impaired sort of my life, I didn’t need special education services in the sense that I compensated.
My son, when he was six, he had a severe form of dyslexia. So it was pretty evident. And it was a colleague of mine at McLean that did the testing when he was six and he absolutely needed special education services. And we can talk later about what that looks like. You don’t necessarily outgrow it, you work with it.
I mean, the goal is, and the big push here, one of the messages of why our conversation is so important is to get it identified as early as possible and for students to get accommodations, to get the right remediation, because it is a different level of instruction and a different form of instruction for someone with dyslexia.
They need a different kind of instruction than kids who are just maybe a little lagging in their reading. This is very different. And that level is early identification.
And even with remediation, like there were things, again, like writing, a lot of dyslexics are dysgraphic, which I definitely was as a kid where my handwriting was pretty illegible. And my kids would say it’s still very illegible.
And spelling as I mentioned, doesn’t tend to overall get better, but your reading could get better. And dyslexic people, I work with lots of dyslexic individuals who love to read. You don’t have to hate reading. And so it’s not necessarily something you outgrow.
And dyslexia, aside from reading and spelling, they do find that there are these other things about the dyslexic brain in a sense that lend themselves to sort of like out of the box kind of thinking.
So a lot of the adults that I work with will still define themselves as having dyslexia even if they’re not in school and even if they don’t feel that same kind of impairment, because that identity, especially when they were young, still is with them.
And unfortunately, for a lot of people who don’t get identified, who don’t get the right services, and then who really think of themselves in this very negative way, because they don’t have this context of understanding themselves.
Jenn: Based on what you’ve said so far, it seems like early identification is key to making things infinitely easier in the long run, right?
Roberto: Absolutely, absolutely. Getting an effective diagnosis. With dyslexia, it’s one of those things that a lot of times we don’t know what we don’t know.
The privilege of I do this kind of work, and I know what my genetics are and in my family we have a lot of ADHD and a lot of learning disabilities, and a lot of, again, cool out of the box thinking that comes along with that.
But to let parents know out there, that if they’re sensing that their kid is having trouble like reading or identifying certain letters and words, starting, it’s okay to get early intervention evaluation, for example, and through the school to start seeing that.
Now, certainly there are some kids that just take a little more time to read, absolutely. But you definitely want to catch it earlier rather than later, to get that instruction in as soon as possible.
Jenn: I know you’ve mentioned some of those syllabic challenges that may pop up as being a sign that a child may have dyslexia. Are there any other signs that would be hallmarks of the condition that parents or guardians should be on the lookout for?
Roberto: Difficulty learning the alphabet, that would be more than, again, what you would expect for that child.
So a lot of times like reversal of letters, seeing the word b thinking it’s the word d, confusing certain letters. There’re actually like certain things even with like these characteristics of like fine motor skills, tying shoes, they find that those kinds of things, left/right confusion.
Interestingly, there’s a higher rate of ambidexterity amongst people with dyslexia that can do things with like their left and right hand.
And one of the things that may lend themselves to that, that they also find about the dyslexic brain is that for people who are not dyslexic, there’s an asymmetry of the left and right hemisphere of the brain, where they’re not equal in size.
They find with dyslexia, there’s more symmetry. And one of the theories may be that it might lend itself to sometimes an over-communications of signals. So like the word b has a ba sound, it’s just that, that ba sound.
But it may be that sometimes the dyslexic brain might be over-communicating where it entertains, it could be all of these other things as well. Now, the benefit, ‘cause I always want to underlie that this isn’t a bad brain, this isn’t a damaged brain, these aren’t broken individuals.
One of the things I learned in my own education as a parent, I read early on was, if you have a kid with dyslexia, if they could learn a musical instrument could be really helpful for making those neuronal connections in the brain and they might take to it.
So when my son was sick, I had him take piano lessons. And he wrote his first song when he was six, like musical notes and everything, it was called I love my daddy, just saying.
Jenn: Were you like a co-composer on it, asking for a friend.
Roberto: And even his music teacher is like, “Wow.” Like he’s really grasping, because now in music, what makes music reading hard for people is we’re not used to seeing the symbol and having a sound with it.
We’re used to letters having that sound-symbol association, but a dyslexic brain, because it’s almost what makes it difficult to read, might make it easier sometimes to do things like that.
Like I have patients who... Like foreign languages can be very difficult for people with dyslexia. And in fact for kids, like it was waived for my son in middle school, high school, they require it.
And so he just finished his two years of Spanish and did well, and he’s done with foreign languages, but it was very, very difficult. He’s like “Dad, why are they requiring this?” It was hard enough to sort of get the English principles.
But having said that, I’ve worked with patients who have a harder time, or rather an easier time learning Chinese or Japanese than they would Spanish or French. And whereas a typical American born individual might find that language really difficult ‘cause it’s all these symbols.
It’s looking at it from a perspective, but understanding that again, we always want to make sure that the person is still getting identified, they’re getting the remediation. And most importantly, that their self-esteem is intact.
Dr. Seuss books, if your kid has a hard time reading the Dr. Seuss books, because again, those operate on very phonetic kind of principles. Those are usually the first signs. And listening to teachers.
Teachers are often... I mean, it was my son’s kindergarten teacher that she said, “For someone who’s as verbal as he is,” and he was very verbal, “his reading is not where I would expect it to be.” And I was like, “Yeah, I didn’t enjoy reading very much either.”
But I didn’t understand it to that degree. I assumed a lot of it was my ADHD, which definitely plays a part in it as well. But then when I look back at some of those syllable segmentations and things like that, I was like, “Oh yeah, no, there is a little flavor of that in there as well.”
Jenn: As somebody who has been on both sides of the coin for this, both being an advocate for a patient who has dyslexia, as well as working with patients who have it, what should parents be looking for or asking for in their child’s school system to make sure that they’re not lagging behind?
And how would you suggest parents start navigating that process to be an advocate like you’ve been?
Roberto: Absolutely. So first and foremost is to get tested.
So whether that’s with a private neuropsychologist to do a battery of tests, because unlike in our conversation about ADHD, where neuropsych testing isn’t essential to diagnose ADHD. In fact, there’s a very high false negative rate.
People who don’t test as having ADHD and neuropsych testing, who really do have ADHD, ‘cause it’s not always generalizable. Dyslexia is the opposite, that you really need those neuropsych and neuropsych data to effectively diagnose it.
And that really is the beginning. Now, some people, if they can’t afford neuropsych testing, the school, if you’re in a public school system, you’re entitled to that, for your school to do an evaluation, to test for that and to look for readings.
So that’s really first and foremost to see how it works, because even to keep in mind too, that one of the things that now my son can look at and realize that comes out of this is, you do learn to compensate even when you’re not aware that you’re compensating.
And so one of the things that was helpful was my son would memorize, and a lot of dyslexic individuals will memorize whole words. And so like one of the neuropsych tests is like what they call an illusion task. It’s like here’s, like if I said to you, tell me the word chat without the ch, and you say at, tell me the word vinegar without the vin, and you’d say egar.
And with dyslexic individuals, that’s really hard. And my son would just mem, he would read books, but it’s because he’s literally memorizing like the whole words as opposed to actually decoding them.
And so the neuropsych testing showed his decoding skills were very, very poor, like very, very low. And that he just had a really good memory for memorizing these words. And so that’s where that neuropsych data is so important, is because sometimes it could be missed because like, “Oh no, my kid’s reading.”
I can tell you from my experience, I don’t know if this is a chicken or the egg thing, but I’m really good at getting the gist and the big picture of something very quickly. And I don’t know if that’s because when I was younger, I didn’t read the whole book, I would skip around and I’m like, I could tie it all together.
I don’t know if that was me compensating for it, but either way, I could talk about the book and you would think that I read every word of the book more so than the kid next to me that might’ve read every word.
But meanwhile, I’m thinking I can’t, I can’t like get through like all of this. I mean, Shakespeare, forget about it. I thought that was like a torture device. I was completely convinced that that was meant to like punish me. So neuropsych testing through the school, through a private person, now you have data.
Now with that data, and this is where it’s different depending on the school system, parents are going to be the advocate to work with the school system to get their child the effective remediation. It’s not just more reading.
There are empirically derived programs, the Wilson Reading Program, Orton-Gillingham Reading Program, Lindamood-Bell Reading Program. Studies show there isn’t one that’s necessarily better than the other because all dyslexic profiles might be a little bit different.
Some people, their decoding is really the problem. For other people it could be fluency, for other people it could be that automaticity, for some people it’s a comprehension. And each of those programs target a little bit something different, but they need that kind of instruction.
Now this is where sometimes schools don’t always have that, it’s not always available. Some people have to get tutors to do that, and that’s where some parents have to have their child placed in a school as an out of district placement.
Massachusetts, we’re a great state for a number of reasons, but one of them is we have two schools, the Carroll School and the Landmark School that specialize in educating kids with learning disabilities, so with dyslexia.
We have John Gabrieli who’s at MIT is one of the leading researchers of dyslexia, he’s here in Massachusetts. So we are overall more aware and attuned to it. But that doesn’t mean every school system has sometimes even the teachers that are on their staff to be able to do that. And so parents have to really work.
And I tell parents, not to look at it as a fight, I never want it to be the sort of adversarial thing, but to understand that their child is entitled to those services. And if the school can’t provide it, then there has to be some discussion of how that child can get those services.
Jenn: One of the biggest things to consider when working with a kid with any type of ability, self-esteem, it’s a huge issue. No matter what we try to do, bullying can be really unrelenting.
And a lot of kids who have dyslexia can very much be bullied as being slow, dumb, you name it, not that it is true, but it’s things that they can witness. It can be a blow to their self-esteem.
What can parents do to mitigate any of these self-esteem challenges in their kids as they arise, particularly as communication fronts tend to increase in kids?
Roberto: This to me, Jenn, is the fundamental thing. When my son was diagnosed, and my colleague, the neuropsychologist said, his dyslexia is pretty severe, he’s on like the severe end.
My first thought was not, “Oh my gosh, he has to read Shakespeare. Oh my gosh, he has to read every Harry Potter book. Like it’s no.” My first thought was, “He cannot think that he’s dumb.” I mean, I don’t think anybody is dumb.
But his neuropsych data showed quite bright and he’s an amazing problem solver and very creative thinker. He can’t think that he’s stupid.
And clinically, for any therapists out there who are listening to this, it’s so important to ask your patients if they’ve ever been diagnosed with a learning disability, ‘cause even if they’re not in school anymore, to understand the narrative and the identity that can come along with that.
And especially for people who did not get the remediation, who really incorporated the sense of themselves as being stupid and dumb, that affects and can give rise to depression, to anxiety, to a whole host of mental health issues, self-harm behaviors, eating disorders. I’ve seen a lot of that as a result of that.
So my first thought was, “Okay, we can’t think.” This is what I recommend, number one is, whatever your child is into, or is interested in, find models of people who have that. So my son’s favorite show when he was six was “Shark Tank,” which is still on the air.
And unbeknownst or maybe known to people, Kevin O’Leary, Mr. Wonderful, dyslexic, Barbara Corcoran, dyslexic, Daymond John’s, dyslexic, Mark Herjavec, is that how you pronounce, he’s ADHD. And people argue that Mark Cuban is probably ADHD, but we don’t know for sure.
Jenn: Some of the most successful people, both on paper and in the real life implication.
Roberto: Absolutely. So the entrepreneurial field, for example, is filled with people with ADHD and dyslexia, and it makes sense.
If you’re somebody... ‘Cause one of the strengths that comes along, and when I say strengths, I always qualify that by saying, provided that the person has gotten the remediation and the identification that they need.
Because if somebody thinks they’re dumb, they’re not going to identify strengths of having a dyslexic brain, but it has to be coming from that place of self-esteem, is being an out of the box kind of thinker and creative problem solver.
So that was really helpful that I had that. If your child is a musician, Google who are dyslexic musicians, athletes, Nobel Peace Prize, scientists. There’s representation out there.
I’ve worked with a young person some years ago who wanted to be an actress and thought, “There’s no way I can be an actress and being dyslexic, like, how am I going to read?”
And I was like, “Well, you know, Whoopi Goldberg, who is one of my favorite actresses is dyslexic. Jennifer Aniston, from Friends is dyslexic.” Like there are lots of representation out there.
Second thing is to educate your child. And I get this because parents always, they want to protect their children. And I’ve worked with parents who are like, “I don’t know if I want to tell them that they’re dyslexic, because I don’t want them to feel different.”
And I get that. But what I tell parents is number one, they already feel different. Number two is they are different, but no one is saying different is defective. No one is saying different is bad.
So we, it’s up to us to define for them that this difference is not a bad thing, it will require some additional work. And there are some challenges that come along with that. And there are these wonderful things about this wiring of the brain that come with it as well.
So when my son was six, first I went on Amazon and I typed every children’s book that had a dyslexic character, and I bought them all. I literally just bought them all. I didn’t even read the ratings. They all came in the mail, and I read them. I wanted him to just see it and understand it.
And you can talk and cater the language for people out there who obviously know their child best. But I said to him, “This thing, it’s called dyslexia.” And ADHD was something that has been in our household. I’m like, “It’s sort of like ADHD. It’s just the way the brain is wired.”
I said, “However, a lot of people don’t understand this. And a lot of people unfortunately think that only strong readers are smart, and that if you’re not a strong reader, that you’re not smart. Some people might think that you’re dumb because you have dyslexia. That’s not true.”
I said, “Some people are going to be surprised that you’re dyslexic.” Because again, my son was an early talker. He was masterful at taking vocabulary, like he would overhear a word. I would use this high vocabulary word in a conversation I was having with someone.
And he would know by context, exactly what that word meant and he would use it. I wish I could think of an example, but there are many where he would say, and I’m like, “What does that word mean?”
And he would be five and say, “Well, I think it means that dah, dah, dah, dah, dah, based upon what you were saying,” and he was right. I mean, he was always right.
I said, “So some people might be surprised because your vocabulary is so high, you’re very bright and they’re not meaning to be mean, but they might be like, ‘what do you mean you can’t read?’” So I would role play with him scenarios.
I said, “So let’s say like if somebody says like why,” ‘cause he had to be pulled out in classes. And I was very fortunate, in our town, our school system has a language-based learning disability classroom, which is not something that a lot of schools had.
He was the youngest kid, not because he is the youngest kid who has dyslexia, but he was identified young. Unfortunately, a lot of people who are diagnosed with dyslexia are diagnosed typically around fifth grade.
And the reason for that is that prior to fifth grade, we’re learning to read, and fifth grade and on we’re reading to learn. And so there’s that flip where there’s no reading classes anymore. And then it becomes apparent at that point, oh, wait a minute, there’s a real problem.
But unfortunately, these kids have already internalized most of them, the sense that they’re not smart and that they’re just not intellectual individuals. So I said, “So what if somebody says you’re dumb, like you can’t read? What’s something you can say?” And I would give him scripts of like verbal script.
“What if somebody says you can’t read, but they’re not meaning to be mean?” We went through all of this. And I tell you, Jenn, one of my proudest moments, I mean, I can get emotional just thinking about is just probably two to three weeks after that conversation, I picked him up from school as I did every Friday, and he was like, “Oh, dad, daddy.”
He said, “Music was really fun, and we were reading the song.” He was a non-reader basically in first grade. And he said, “And I asked the girl next to me if I could just stand next to her and have her say the words ‘cause I couldn’t read any of them.”
And she said, “What do you mean you can’t read these, these are simple words.” And I just said to her, “Oh I have this thing called dyslexia. Three of the sharks on ‘Shark Tank’ have it.” And he just said it so matter of fact.
“It’s just the way my brain is wired, that’s why I’m getting these special instruction,” or I think he used another word. “It’s just going to take me a little bit longer to read.” And she was like, “Okay.” And then that was it.
And I thought, “Oh my gosh, like that could have been a moment where if he wasn’t equipped with that could be the beginning, like the death of a million paper cuts of self-esteem,” ‘cause think about it.
And if you talk to people with dyslexia, you will hear stories of people dreading being called on to read out loud in class, like excusing themselves to go to the bathroom when they knew it was their turn to read, to get out of... I mean, painful, painful things that you have to, if you don’t again, get that remediation.
So teach your child, define it. One of the resources is there’s an organization called Decoding Dyslexia. It’s a grassroots organization started by parents. There are chapters in almost every state. The Massachusetts chapter is very active, they’re wonderful, wonderful people, connect with them.
Talk to other parents, have your child meet other kids. A lot of kids don’t even know another kid with dyslexia.
We had the pleasure through Decoding Dyslexia, when my son was 10, there were two bills in the State House, one was to actually have the word dyslexia in an IEP in an individualized education plan, because up until that point, it was called a nonspecific learning disability, which is not accurate.
It’s dyslexia, let’s talk about it, and it requires certain interventions. And not only did I testify in the State House, to the Department of Education, but my son at 10 testified about the importance of early identification.
Can I tell you what, I had to hold back tears. I was like, “Oh my gosh.” And he wrote the script himself. He said, “Did you know three of the ‘Shark Tanks’ have it, and if I didn’t get diagnosed, who knows where I would be?”
And he’s an honor roll, he’s in high school now, he’s a high honor roll student. So dyslexia in and of itself is not hazardous to your health, as long as you’re getting the right support. And to your point, the self-esteem piece is so important.
Jenn: I do have to say that your son sounds like the most amazing person on this planet.
Roberto: He’s an amazing person.
Jenn: One of those moments where like everybody’s listening in the State House and someone’s like, “Gosh, I think they’re cutting onions.”
Roberto: Well, I tell him that the truth is, is that when you have a learning disability, you are working harder than your peers are, in that, at least when it comes to reading and writing and spelling.
And I tell him, I really look up to him, because every summer up until high school, he had summer school tutoring. He was at the Landmark School for summer program. And granted, there’s privileges that come along with that. And unfortunately, there are a lot of people that can’t afford those kinds of things.
Although public schools offer summer, most public schools offer summer programming. And at the same time though, he was so compliant about doing those things. I don’t know if I would have been at that age.
And so he really worked hard and did that, but that’s the other thing, is I think having those conversations and validating to your child, this is hard, it’s challenging and, not but, but and, we will work through it.
We’re going to get you the services, and you can still get to wherever you want to go. Not even just despite this, but with this. There are lessons and growth that comes along with that in the process.
Jenn: I’m almost afraid to ask the next question, because I feel like as soon as I say it, I’m going to be like well, we’re out of time, ‘cause you will talk about this for the rest of the session.
But are there relationships between other mental health conditions and dyslexia, and more specifically, a lot of folks are curious about, do you know of any comorbidity and challenges associated with a dual diagnosis of ADHD and dyslexia?
Roberto: Yeah, so definitely with ADHD. So 50 to 60% of people with ADHD have a learning disability. Of those people with a learning disability, about 80% is dyslexia.
With dyslexia, there’re studies, I mean, I think part of it is that there’s less research looking at the prevalence of ADHD and people with dyslexia as there is the prevalence of dyslexia and people with ADHD. But studies show about anywhere from 20 to 50%.
In my experience, I would say it’s about 50%, the people that I work with and people I know in my life who are dyslexic also have ADHD, which also can be confusing because I think the hesitancy, frankly, in the dyslexic community for years around talking about ADHD is because sometimes parents have been told, “Oh no, they don’t have dyslexia. It’s their ADHD that is affecting their reading comprehension.
Their ADHD is making them not want to read.” And sometimes ADHD absolutely impact, it will impact your reading comprehension, working memory and those things.
And at the same time, it’s still important to look at dyslexia because maybe the kid doesn’t want to read because they can’t, and they’re having such struggle with it, that their oppositional behavior around reading is not because, “Oh, that’s boring and I don’t want to do it,” is because they’re...
They’re basically trying to compensate and mask this in some ways. So I always say, if you have ADHD as a child, teen, always, always screen for learning disabilities, dyslexia, dysgraphia, dyscalculia, which is math learning disability, which I think I also had definitely had. And for someone who has dyslexia, I would also always screen for ADHD.
Now, as far as other clinical disorders, that it really honestly depends on how the context of the dyslexia, because dyslexia in and of itself does not have to give rise to anxiety, depression, these kinds of issues.
However, I have seen that a lot with kids who have this narrative that they’re dumb, that they’re stupid. Some who have been diagnosed with dyslexia, some who haven’t yet. And even if somebody has been diagnosed, I mean, it’s still frustrating.
I mean, it’s still really hard. Like even when you have been diagnosed, you’re getting the help that you need, but still knowing you have to work at it sometimes, that can take its toll on people. So you’ll often see anxiety, mood.
There are some studies that show that... There was one study of women with learning disabilities, with dyslexia that found that they were three times more likely to have an eating disorder or body image issues, self-harm behaviors because of the sense that they’re not able to control this learning disability, but they sort of funneled that into something else.
So those clinical disorders, again, when you are working, anyone who has a patient, or if a parent has a child, always to look at those kind of issues and making sure that those, whether it’s anxiety or mood problem, don’t kind of spiral.
But again, I always say in and of itself, with early identification, ‘cause there are a lot of great studies that have also shown early identification, having a name, having the name dyslexia is also associated with higher self-esteem.
So when studies have looked at kids who have been told that they have dyslexia and getting the services that they need and kids who are not dyslexic, they may find actually no differences in self-esteem.
But the kids who either are not told that they have dyslexia or are in mainstream classrooms when they should be getting empirically-derived reading instruction, those kids tend to have really poor self-esteem.
Jenn: Can you talk a little bit about the stigma that is still surrounding dyslexia and how an association of shame with the condition can impact other aspects of mental health? I know we’ve talked a lot about self-esteem, we’ve touched lightly on anxiety and depression, but can you just elaborate a little bit more?
Roberto: Yeah, shame is huge. And I see this in different levels. I see this with the parents sometimes who they feel shame that they passed on these bad genes, they say to their child.
So sometimes the work is be validating and helping the parent not feel bad in that way. And also know too, that generationally, we’re so much better than we were 20 years ago, 30 years ago in terms of...
I remember doing a talk, it was actually to a senior citizen audience in a community about hoarding. And I happened to mention very briefly that ADHD is highly associated with hoarding, and I talked a little bit about dyslexia, like maybe four minutes of the...
And afterwards, this man who was 90 years old, came up to me, he had his cane and he said, he had tears in his eyes, and he said, “That’s three minutes that you talked about ADHD and dyslexia. For the first time in my life I realized, ‘oh my gosh, that is what I have.’”
He goes, “I have carried shame my entire life because when I was a kid, the teacher wrote a note to my mom and said, ‘don’t bother bringing him back to school, he’s a dunce. He should just be working in like manual labor.’”
Not that there’s anything wrong with manual labor, but the idea that he couldn’t be educated as opposed to...
The community, we have this joke that, people aren’t, it’s not that they can’t be educated, it’s that it’s like dysteachia, that it’s that the school isn’t doing what they’re supposed to do to educate the child. That shame can really be long-lasting.
I see this more with adults that I work with, who maybe weren’t diagnosed, weren’t identified, or again were, but didn’t have that sort of narrative. They didn’t have the representation to look at. They didn’t have the books that I can show you in a second.
So they think of themselves as like, even very successful entrepreneurs that I work with, they’ll say, “Well, I’m not really bright, I just work really hard.” And they dismiss it. And I say, “Well, no, you do work really hard, and you’re bright.”
I mean, I worked with a student who’s now at an Ivy League institution, she is dyslexic, straight A student. And I said, “Wow, that’s amazing. I mean, you should be so proud of yourself. Not only just the accomplishment of getting into the school and working hard, but I can appreciate what it took for you having dyslexia.”
It’s like, “Yeah, but I’m not very bright. Like I think it’s just that I work really hard.” And it’s one of those things like, “Yes, you worked hard, and you’re bright,” but there’s still... Even with the parent providing that now.
I have to be aware, like I’m not immunizing my son from having those thoughts sometimes. I’m trying to give him the best chance of not having those thoughts, but absolutely that shame and that idea of like, “Oh, it’s hard,” but you don’t want it to internalize into how they see themselves overall.
Jenn: So could you share some common pitfalls that providers may make in both the clinical assessment and treatment of dyslexia? More importantly, we had a couple of folks write in saying, “I’m new to practicing medicine. How can I overcome these common pitfalls myself?”
Roberto: One is if somebody has had a neuropsych assessment, that’s often the best part.
But even in therapy, just like when we talked about ADHD, there’s an assumption of a certain level of executive function that when we’re doing like cognitive behavioral therapy, and we’re asking somebody to keep a mood monitor or in dialectical behavior therapy, having people do diary cards.
Like there’s a certain level of executive function that that involves. Now when we talk about dyslexia and we’re saying, “Oh, I want you to write this thing out.” I’ve had patients that feel a lot of shame. They don’t want me to see their handwriting.
Now, I think because I’m very open about my own experiences and whatnot, that they’ll say, “Oh my gosh, wait till you see my writing,” and they show it to me, I’m like, “Wait till you see my writing.”
And some of them even again, is 40, 50 year olds, they write phonetically, and they’re very embarrassed about it. So some of them will either type it out or they don’t do it. They’ll say, “Oh, I forgot to do it.”
Or if there’s reading, that you’re asking a patient to read something and there’s dyslexia there to understand the implications of that. Now there are a lot of accommodations that now we have audio texts, we have Google Speak, we have Speechify. I mean, there are a lot of tools that people with dyslexia can use.
‘Cause one of the other things that we find, Jenn, is that even with proper remediation, the two things that tend to be long-lasting is spelling and the rate of reading. So it tends that, not that, I’ve worked with adults who are fast readers who are dyslexic, but that’s one of those things that the rate of reading is not as quick, even though they can come...
I mean, I have patients who love to read, but it might take them still a little bit longer in that way. So I remember working with a patient who, and it wasn’t even around ADHD, dyslexia, it was around anxiety.
We were reading an exposure script of an anxiety exposure. He was reading it out loud, and I can tell that he was sort of like taking his time and even certain words, even he was having...
And he was getting embarrassed and I said, “Oh do...” In the first session I usually ask about history of ADHD, learning disabilities. And he said, “Yeah.” He goes, “Even though I’m 50 something years old, like these words are, he said an expletive.”
And I was like, “No, that’s still...” I said, “That still happens” and like, so we want to try to be aware that that shame still sort of carries on. And educate people about tools they can use. Because just because you’re dyslexic doesn’t mean you can’t enjoy books and read.
College students, I mean, there are textbooks that you can get online, that you can have audio. I mean, there’s so many resources now out there that people can take advantage of.
Jenn: We had someone write in saying, as a new clinical provider who has dyslexia, how can I best advocate for myself regarding charting in a timely manner?
Roberto: Yeah, I would say utilizing audio often could be really helpful, and just having like a Dragon Speak or something like that, because a lot of people actually with dyslexia can have very high verbal skills.
And again, it’s this intricacy of the brain, like is that because they’re dyslexic that they can have... I mean, it’s similar to what we find with entrepreneurs, like is it this out of the box thinking in some ways, because your brain is not sort of seeing things so linearly.
But yeah, utilizing audio speak and doing things like that can help people sort of keep up with their paperwork and just being realistic and honest with yourself in the sense that like, I’m not a fast reader, in graduate school, unlike high school where I really didn’t care if I read what I was supposed to read, but I really cared in college and in grad school, and I had hundreds and hundreds of pages of reading in grad school.
I would just have to be honest with myself of this is how long it takes me to read 10 pages of this kind of dense text. It’s going to take me this many hours and I have to just account for that.
And that’s very important with people who have dyslexia, just to be honest. Because what’s worse is if something that “should” only take two hours to read for a neurotypical person and the person’s like, “Okay, I’m going to get this.”
And they’re only a quarter of the way through it, then they feel really bad, then they feel like, “Oh, this just isn’t for me.” And that’s what I want to send the message for anyone out there is that, whether it’s any neuro-diversity, don’t count yourself out of getting a PhD or going to medical school or being a lawyer.
Just because you have dyslexia, there’re ways, there’re resources, there’re tools. Yes, there will be more things that maybe you have to do and account for, but if it gets you to where you want to get to, it’s worth it.
Jenn: What are some of the best evidence-based interventions that you’ve found, or even instructional programs that are available for folks with dyslexia?
Roberto: So definitely the ones I mentioned before, the common ones, Wilson Reading Program, Orton-Gillingham.
And you’ll find like if you Google, like there are tutors who specialize in that specific reading instruction that could tutor as a supplement to child’s education. Lindamood-Bell is another one. Those are the three. And then there’s like combinations.
I mean, sometimes there could be like for decoding, I believe Wilson is like a big one for decoding, whereas Lindamood-Bell might be better for fluency. So sometimes it could be almost like a hodgepodge of all of those.
So it’s not always like a one-size-fits-all, but you definitely, especially for a student is getting... Those are empirically-derived remediation programs for dyslexia. And it’s appalling how some school systems across the U.S., I mean, stories that I’ve heard of things that get passed off as effective reading instruction that are not.
And keeping in mind, going back briefly to the self-esteem piece is, many people that I work with, and I know who have dyslexia can often recount some very harsh experiences, sometimes with teachers. Most teachers are wonderful. My son’s teachers have been fantastic.
But for teachers out there to know the level of responsibility they have in their words as well, and the tone of their voice of how they speak to their students about some of these things. But that carries a lot of weight too, in terms of how other people have responded or like, “Come on, you should be able to read this by now.”
And I say, well, if they weren’t getting the right remediation, then how are they expected to do that?
Jenn: I know we’ve talked a lot about resources for students, but are there any reputable resources for adults with dyslexia?
Roberto: So the resources really with as far as adults, because what they find even with neuropsych testing, if an adult were to get neuropsych testing, by that time, most adults have compensated so much that they might find some of the scoring there, but they might also not in the sense that because there’s been such compensation by that point, because reading is something we’re engaging with on a day-to-day basis.
And so it’s something that the brain has sort of like worked around in that way. But what I would say is education is still key. Like educating yourself about it.
Even if part of that education is going back and almost rewriting the script for yourself of like, “Oh, that makes sense. Oh, I didn’t realize that my left/right confusion is part of that same wiring.” Like I still have left/right... And I’m a bit ambidextrous.
I remember as a kid, when we had to, like if you were facing somebody whose back was to you, it’s like, “Okay, that’s their right hand, this is my right hand, it’s on the same side of the page.”
But if someone was facing you, I had such a hard time being like, “Oh no, no, that’s their right hand over there, but this is my...” It was so hard to do that. So educating yourself.
Now, these are books, and I have them as visual aids. This is the bible that helped me as a parent and as a professional, called “Overcoming Dyslexia” by Sally Shaywitz.
As you can see, I still have little bookmarks here of, I brought this to every IEP meeting that I had with my son of where he should be, how many words per minute he should be reading. This is the book.
This book, it’s a small book called “When Your Child Has Dyslexia” by Abigail Marshall, and it’s a small book, it’s about 200 pages, but it’s small. It’s easy to get through. It’s a great primer.
So for any parent who has a child with dyslexia, I often would say, this is the first book to get, is just a quick primer, but absolutely get this one. And then this is also one of my favorite books called “The Dyslexic Advantage.”
And this book talks less about the remediation of dyslexia, which “Overcoming Dyslexia” does a fantastic job doing. But this is more about the strengths that come along with the dyslexic brain, the problem-solving, the creative abilities, the empathy, the emotional intelligence.
Other things that might come that might be hard for other people might be easier for people with that wiring, provided that those other things are taken care of. Decoding Dyslexia, the International Dyslexia Association, understood.org is a fantastic organization.
I’m a featured expert for them. They do a lot of great work and really speak to parents. Your local SEPAC, which stands for Special Education Parent Advisory Council in your town. Talk to other parents.
Parents were an incredible source of support for me and my wife in terms of like just getting services and understanding just how to navigate through that system. A lot of people hire advocates to go to IEP meetings, because unfortunately it can be adversarial sometimes.
And also just because I appreciate humor therapeutically, and I’m very in touch with my inner child and my sense of humor, but to find levity also in this as well. I have a good friend of mine, he’s a comedian named Phil Hanley, H-A-N-L-E-Y.
And I highly recommend, he has a bit, he was on The Tonight Show with Jimmy Fallon. And if you just put on YouTube Phil Hanley Tonight Show, it’ll come up. It’s about a five-minute piece, he’s dyslexic.
And in his comedy, most of that five minutes talks about dyslexia, but it’s so helpful too, to get this point of view of, and I’m not going to tell the jokes, that I don’t want to spoil it. To me, great stand-up comics are people who can communicate pain and can communicate struggle, and have you laughing at the same time. And I think he does a brilliant job of it in that clip.
When I send that clip and when I first saw that and when he did that and sending it to adult patients of mine, all of them were laughing out loud and they said, “Oh my God, this is so true.” Like just to hear someone speak their gospel in a way, so important.
Every year, the International Dyslexia Association has an annual conference, this year it’s in Charlotte, North Carolina, October. I will be there talking about self-esteem and promoting positive self-esteem and identity.
Great place to meet other educators, parents, people with dyslexia. The resources are out there. So knowledge is power.
Jenn: I do love that you mentioned strengths that come with a dyslexic brain because that and my last question, I was vacillating between which one I should ask, you already covered that one. Do you have time for one more question?
Roberto: Yes, sure.
Jenn: Beautiful. So I know you’ve talked a ton about your own experiences with having some dyslexia. You’ve talked extensively about your son, and I know I speak for everybody tuning in about how much we appreciate your transparency and candidness about all of it.
I did want to ask that based on your own experiences with this condition, how has it shaped your perception of dyslexia? And do you have any words of wisdom for folks, either caring for someone with dyslexia, working through their own or both?
Roberto: Yeah, I think that part of it is really taking the shame away from it, and just being open and transparent about it. I mean, I haven’t read a fiction book in 26 years. And the last fiction book I read was only because somebody left it in a pocket of an airplane.
And my Walkman, the days before the iPod. Walkman batteries died. And I was like, “Oh, I might as well.” And it was a Stephen King book and it was fantastic. It was a book called “Gerald’s Game.”
And I thought, “I’m going to read every Stephen King book after this,” doesn’t happen. I read psychology-related stuff, which I love, I love reading memoirs. I’m more of a nonfiction reader, and people with, whether it’s ADHD, dyslexia, sometimes you’ll see that sort of favoring towards like nonfiction.
I’m probably one of the few people in the planet who has not read the Harry Potter books. And that always gets a gasp. That’s like, “Oh my God.” Like people are apoplectic when they hear that I haven’t read. But I’m like, “I don’t know.”
I hear books. I just heard Barack Obama’s memoir, I just finished. So I utilize that as well, but I tend to favor nonfiction. When I think of someone like my son, who really, ‘cause again, like it was not, looking back, like if I did neuropsych testing, I’m sure something would have come up.
But it wasn’t enough that certainly like impeded me in the way that my son needed the kind of instruction. He uses audio stuff. And he actually will listen to a book and sight-read it at the same time.
And one of the things we talk about in the dyslexic community is not to assume that audio-reading is not reading, that we have this implication that only sight-reading is reading. And if you’re hearing it, you’re not reading it, and that’s not true.
My son could hear a book and his comprehension will be far better than my reading, like sight-reading it. And so taking again, away that shame and broadening our perspective of what reading is and what getting information is for us.
And looking back just like when we talked about ADHD is, there are a lot of things I can chalk up in my brain is like, “Yeah, that was really difficult or frustrating.” Or “Uh, that definitely led to some bad moments.” But the same brain is I attribute to all of my successes and all other things that I really like.
So at the end of the day, I wouldn’t change my brain for anything. And that’s what I want people to sort of walk away with is that every brain, frankly, is going to have its strengths and it’s going to have its challenges. And that’s ultimately where I want people to get to with this.
Jenn: Roberto, I have to say, I think that your intelligence, both emotional intelligence and just your knowledge of these subjects is just so inspiring and eye-opening. This was fantastic. So thank you tremendously for another wonderful session.
And to anybody who’s tuning in, this actually concludes our session. Until next time, be nice to one another, but most importantly, be nice to yourself. Roberto, thank you again so much, and thanks everyone for tuning in. Take care.
Jenn: Thanks for tuning in to Mindful Things! Please subscribe to us and rate us on iTunes, Spotify, or wherever you listen to podcasts.
Don’t forget, mental health is everyone’s responsibility. If you or a loved one are in crisis, the Samaritans are available 24 hours a day at 877.870.4673. Again, that’s 877.870.4673.
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The McLean Hospital podcast Mindful Things is intended to provide general information and to help listeners learn about mental health, educational opportunities, and research initiatives. This podcast is not an attempt to practice medicine or to provide specific medical advice.
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