Hyperlexia in Children: Early Signs, Diagnosis, and Treatments

Transcript for Podcast Episode: 225

Hyperlexia in Children: Early Signs, Diagnosis, and Treatments

Hosted by: Mary Barbera

Mary: You're listening to the Turn Autism Around podcast episode number 225. This is a classic rebroadcast on a show we did a couple of years ago on Hyperlexia, which is an intense interest in letters and numbers and words and reading before you can possibly speak. It is often an early sign of autism. It's a confusing sign because I know back when Lucas started showing signs of hyperlexia before I thought about autism or when I wanted it to be Hyperlexia instead of autism, it was confusing to me. So this episode hopefully clears it up. There's a lot in here, a lot of stories and a lot of advice on what you should do to bring those strengths forward without affecting or making language worse. We really need to capitalize on the child's strengths to bring up the weaknesses. And today we're talking all about that.

Intro: Welcome to The Turn Autism Around podcast. For both parents and professionals in the autism world who want to turn things around, be less stressed and lead happier lives. And now your host, autism mom, behavior analyst, and bestselling author, Dr. Mary Barbera.

What is Hyperlexia?

Mary: So glad you're listening to this episode all about hyperlexia, which is really quite common in children with autism. And it is also an early sign or a red flag for autism to be overly interested and sometimes obsessed with letters. But despite being able to read well, children with hyperlexia will oftentimes show signs of a developmental disorder such as autism. And because they are focused on letters and reading and at the same time, if they are also unable to speak or communicate like other kids of their age, this is often a red flag. Now, an interest in letters and reading early can also be a sign of giftedness. But that's when your language is pretty much intact. And then you're also heavily interested in letters and reading early. Kids with early signs of hyperlexia and autism also might exhibit behavioral problems, insistence on sameness, wanting to line up letters, wanting you to repeat words or letters, you know, often. And the other big thing about hyperlexia when it is an early sign of autism is that the child has usually lower understanding of language, what we call receptive language. And I've done a video blog on receptive language, and you might want to check that out, because if they don't understand, for instance, when they're two how to touch their head or their belly without you showing them, that would mean that they're receptive language or their understanding of language is probably below expected. So if you have a child who is say, two, who is not requesting things they want, who is not saying mommy and daddy, who's not potentially pointing at that point, pointing is a big deal. I've done a video blog on that. But then you also state that despite these delays, your child has an interest in letters. This is often hyperlexia and also a developmental disorder and probably a sign of autism.

Stories of Hyperlexia:

Mary: So let me tell you a few stories just to kind of give it some context. I have told these stories on different podcasts. I have done a video blog on autism and hyperlexia. And so some of these stories you might sound familiar from here and there, but I was so confused when my son Lucas, who's now twenty five years of age, when he started showing hyperlexia signs, I had no idea what it was. The Internet was just coming to be a thing. So for a while, for probably a year, I was just thinking this was just a sign of intelligence and it was a cute little thing. So Lucas, we would go into Friendly's restaurant and they would have the letters F R I E N D L Y apostrophe S, like, welcome to Friendly's. And Lucas would go up to the friendly sign and he would say F and he might not know R and not say R but he would get to the I, he'd say I, and then he'd point to the E and instead of saying E, he would say egg, which we had a puzzle that the E and underneath it was egg. So I could kind of see where he was getting the egg from. And again, I was just confused thinking this is a good sign and I'm not here to say that this is a bad sign. It's not a bad sign. It's just hyperlexia. And it is in many cases a sign of autism. And we need to know how much to push letters and how much to pull back. And we're going to talk about all that today. But he, Lucas, always had like a strong desire to identify letters. He liked logos. If we'd pass a Toys R US, he'd get excited. So he was paying attention to the stimuli in our environment that had letters. He was also good at puzzles and he liked puzzles. And he had this puzzle association for the E for Egg, for instance. OK, that was Lucas. He never did read before he could talk. You kind of always had some words and he was never officially diagnosed with hyperlexia. It's kind of it is a separate diagnosis in some cases, but it's it's really just a sign of either a developmental disorder like autism could be ADHD or it could be a sign of giftedness with or without a developmental disorder. So let me tell you about another child I worked with. He was a client of mine. I'll call him Nick. And he was in sixth grade when I made my first visit to the school. He was, had very poor language. Still, if you're familiar with the VB-MAPP, he was still within the level two and three of the baby map, even though he was in sixth grade. So that is really impaired. So a sixth grader, I don't know how old a sixth grader should be, but the VB-MAPP being at level two and three is that of a three and four year old child. So his language was very, very far behind. So I went in not knowing much about Nick and he was in learning support reading. And I went to the door to watch him and he was reading a passage aloud. It just so happened to be September eleventh, two thousand and five when my first visit to Nick took place. And so he was reading a passage about 9/11, about the planes crashing into the towers. And he was reading and he would be like, it was a bright, sunny day, September eleventh, two thousand and one. So he was reading fluently. But then I, it was very sad and very alarming because when he got to the part about a plane crashing into Tower one, he read it fluently. And then he started making like crash noises like "CPUR PUR PUR". And I was just standing there. Kind of in shock that a child could read this well and have so little comprehension and you can see kind of the mismatch between the ability to read and comprehend. Nick also had memorized math facts. He could tell you what, nine times three. He could tell you what? Thirty five divided by five. He could rotley answer those questions. But again, his comprehension was so bad that if you said you had, you were making something and you had three eggs and you needed four eggs, how many more eggs would you need? He would have no idea. He could tell time to the minute. But then if you said, OK, we're going to go there in five minutes or we're going to leave in 30 minutes, he would have no idea what that meant. So that's where we really have to focus, especially with older kids. So I told you about Lucas. I told you about Nick, who was an older child. And recently, I want to tell you one more story before we get into the nitty gritty here. I recently talked to a mom who has a son, a two year old, who is showing early signs of autism. And when I spoke with her, she was focused on how quote-unquote, smart he is because he knows all his letters and he can count to ten, but he's having behavioral outbursts. He won't tolerate going to the doctors and getting his ears checked. He won't tolerate, you know, things like that. He also has not said mommy and daddy in a long time. He's not saying like other words, and he's hyper focused on letters. And, you know, I think this is a common thing that happens is parents whose kids do say these things, like with my case, with Lucas and with this little boy, parents get falsely reassured that if they're on the spectrum, this means that they're, quote unquote, high functioning or this means that they definitely don't have intellectual disability. And I've known many kids, including the child I called Nick and including my son Lucas, and including the boy I talked about in my video blog on hyperlexia and autism. These three boys and men now do have autism plus an intellectual disability. So I did a video blog on intellectual disability. And I know that's a really hard thing to swallow for many people, is that they don't if you're going to have a child with autism, you want to help them get to their highest potential. And having another diagnosis of intellectual disability with IQ under 70 is kind of alarming. But I'm here to tell you that, you know, with the mom of the little two year old, we can't rule out or rule in intellectual disability. And just because he knows all his letters does not mean he's, quote unquote, high functioning. I did do one of my first podcast episodes and a video blog on high functioning versus low functioning. So you can check out all of these things. When I say I've done something, you can check out the show notes. They'll be there; Marybarbera.com/141 for this episode. Show notes. You can also if you're out running about running errands or you're exercising and you're listening to this and you're like, I don't understand, you know, where I'm going to find this stuff. You can always search Mary autism plus whatever topic. So if you want to find the hyperlexia blog, you could do Mary Autism plus hyperlexia. If you want to find the intellectual disability blog I wrote, Mary, autism, intellectual disability. So everything is pretty searchable. And I know this is a lot of information, so I'm going to just try to stick to the topic at hand. But I want to point you towards different resources. And one final question from that mom that I was talking to with a little boy who knew his letters is does this mean he'll be OK at eight or eighteen? And while I told her, basically, I wrote a video blog. Can you predict how a two year old will do at age eight or eighteen? And in my more than two decades in the autism world, I can tell you you cannot predict how a two year old would do so. We need to treat any symptoms, any speech delays, any behavioral disorders, any signs of delays in any area, any intolerance to getting your ears checked, any intolerance to getting haircuts. We need to treat all these delays and differences. As much as possible so that each child can reach his or her full potential. Whether or not they're on the spectrum and whether or not wherever they are on the spectrum or turn out to be. So the big things here are this really high interest in anything but in letters and numbers. And the hyperlexia is this could indicate that it is more likely autism. Now I can't diagnose autism and really very few professionals can diagnose autism, such as a developmental pediatrician, neurologist, psychiatrist, psychologist and some specially trained pediatricians. And, you know,I'm going to tell you that if your child does have hyperlexia plus signs of autism, that you have to make the decision whether or not you want to pursue this and get a diagnosis. And the waiting lists are usually very long to even get in line for an evaluation. So it probably doesn't hurt to get in some lines for an evaluation while you try to turn things around. And I can talk about how you can try to turn things around in terms of hyperlexia and any kind of delays a little bit later.

How Common is Hyperlexia?

Mary: So how common is hyperlexia in children? According to Web MD, 84 percent of children with hyperlexia also have autism spectrum disorder. So, Eighty four percent of those that present with early hyperlexia do have autism. And about 6 to 14 percent of children with autism have hyperlexia. So it's not super common. But if you have like Lucas' saying E and egg, I remember finding hyperlexia before I really was out of denial about autism and I found the hyperlexia association. I don't know if they're still going strong or not, but I happened to find a woman in my local area. And she was nice enough to let me come over to our house. And I didn't have Lucas' with me at the time. We'll call her Nancy. And I went over to Nancy's house and her son wasn't home. He had hyperlexia and autism and I didn't have Lucas' with me. So at that point I was thinking of speech delay and hyperlexia and she told me that, you know, there was good, really good treatment for kids with autism and I should look into autism even if I thought that Lucas just had speech delays. And when I called the Hyperlexia Association or professional, she's like, yeah, well, it sounds like he needs a diagnosis of autism. And I'm like, I don't want him to have autism. I wanted to have a hyperlexia. And she's like, well, unfortunately, if he has developmental delays plus this interest in letters, that makes it more likely that he has autism, not less likely. And you probably if you've been listening to me for a while, you've probably heard me and others talk about savant skills. And this can be where you have not only early reading and early obsession with letters and numbers, but you actually have this very unique ability, which I don't understand it. I don't know that many people understand it, but it's when kids say you give your birth date and your year and a child or an adult with a savant skill can say, in my case, you were born on a Tuesday. And I've been told that by like three different autistic individuals have told me that my birthday was on a Tuesday. And this is a savant scale. If those of you who watch the movie Rain Man way back when and you know some people with autism memorize sports facts, want to be sportscasters. You know, like sometimes salmon skills can work out to be like a strong hobby or even a work skill. But in most cases, the stronger the savant skill, it just especially if the other delays are not caught up in the speech and the receptive language and the tolerance to haircuts and doctor visits. If that's not all caught up and you have somebody that's memorizing my birthday in some kind of way with calendars, it just becomes less and less functional. So knowing letters and or numbers at two doesn't make a child high functioning. It doesn't mean that he won't go on to need a diagnosis or get a diagnosis of intellectual disability. And it doesn't mean he won't need lifetime care. It doesn't mean that he will either, but we just have to work.

Working With Children With Hyperlexia:

Mary: I love this quote from the book, Let Me Hear Your Voice. And I think it's a quote from other things, too. I'm not sure who the original source was, but I read somewhere once that "you have to work like it all depends on you and pray like it all depends on God." And one of the things we can do is actually pull back on any focus on numbers, letters, colors and shapes with very young children who are not talking functionally and age appropriately. So if a child isn't functionally talking, we don't want to hyper focus on numbers and letters. We need functional words taught like mommy, daddy, juice, knowing letters with a two year old can and does make language sound weird. It can really make the child more likely to get a diagnosis of autism versus less. But you can use it to your advantage as well. You just have to be really careful because the more you let the child go on Google Earth and memorize different things or more, the more you give child free access to calendars where they can kind of get obsessed with different things, the more likely that time is going to be taken away from teaching them very, very functional skills. But you can use this early interest in letters and numbers by doing a few things. So I had a child that I talk about in my Turn Autism Around book who ate gluten free crackers and drank almond milk with a bottle at the age of two. That's all he ate and drank morning, noon and night. And so we needed to identify strong reinforcers for bites of food. And this little boy really loved letters. So we had a twenty six letter puzzle and we would do...He needed like feeding program, he needed a set program. And I am pretty much a feeding expert at this point as well. And even back then when I was working with this little boy, I was as well. And we would use each letter as a reinforcement. He just wanted to see the letter. He wanted to put the letter in the puzzle piece. And we turned around his whole eating, you know, his ability to eat real foods and drink real, real things besides almond milk out of a bottle. We used this letter puzzle. You can also use letters and letter names like A, B, C to improve articulation. One of the techniques that I talk about everywhere throughout my book, my online courses, everywhere is we want to break language down into one syllable utterances, two syllable utterances. We're not even talking words. We're talking, you know, one syllable, two syllable words early on. And the good thing about the English alphabet is they are all one syllable and they're all they all are can be used to make up words. So C is the letter C, but it's also SEE like with your eyes see. Me, E if they can say E and they can say M, then they can probably say, Me. If you can get them to say MMM EE and then you can push that together to be ME. So a lot of things we can do and you can do the same kind of thing with numbers which are also one or two syllables. One is obviously one syllable, seven is two syllables, but kids that are highly motivated to get the piece of the puzzle. So if a child is not hyper focused on letters and numbers, I probably wouldn't present letters and numbers as your first puzzles. But if your child is really obsessed or interested in letters and numbers, I might use those not all the time. We need them also to do puzzles that are animals, cow, pig, because we also need him to do the shoe box program, which is another early learner material that is really helpful. And when you do the shoe box program, we want words, nouns that are highly preferred things and people. And so if the child has a cat and cat is a pretty functional word and he likes cats, you have a picture of a cat. But if it has cat on the bottom, we want to cut that off or tape it up because we do not want the child hyper focusing on. He sees a cat, he knows how to spell it. He does spell it. Just think about how that may be shaped up to be weird language. So no matter what the child's age, too, we also want to focus on receptive language and comprehension. So when we talk about reading comprehension, eventually in third grade, fourth grade, fifth grade, we need to go way into language comprehension. If you don't understand what it means to say, I have a pet cat named Sam, reading that I have a pet cat named Sam may sound interesting, but when you don't understand what a pet is, you know, the cat ran down the street, but you don't understand what a street is. You can't identify if somebody points to a street or or shows you a picture of a street and you don't understand that. And you might say, well, that doesn't really matter. Well, yeah, it does, because we're constantly giving children directions to stay out of the street, stop at the corner. And if children don't understand these kinds of words, then we're in trouble.

The Importance of Comprehension For Children With Hyperlexia:

Mary: OK, so we talked about how to use these interest in letters as a reinforcement and a focus on comprehension. You can also focus on using, especially for older kids like this. This child, Nick, I was his consultant, his behavior analyst from sixth grade all the way through twenty one, age twenty one. And we used a lot because he could understand text really well and he needed a lot of help and a lot of prompting. But he worked, for instance, at a bakery and a grocery store and so he could independently do things but he would just need reminders. But I would probably need reminders if I were going into a grocery store bakery for the first or fifth time, I would need reminders how many cookies go across and down. And, you know, it's kind of complex because he had different jobs within the bakery. And so we would actually write down in order, you know, get blueberry muffins, get large pan, four across, six down and then put it in the oven. I don't think he actually did that direction. But, you know, just think of a task list for yourself and that did really work in terms of requiring less and less prompting from an actual adult. An adult needed to be there. But the more we can use textual prompts, picture prompts, the more independent the child or adult can be. So in summary, young children with early signs of the hyperlexia, which is the ability to recognize letters and read before they can speak, usually also have signs of a developmental disorder, especially autism. So in general, I would not focus on teaching or reinforcing or hyper talking about pre-academics to toddlers and preschoolers in general. And this includes letters, numbers, colors, shapes, reading. If they are already reading, make sure you focus on comprehension so they might be able to read at a 2nd grade level and they're only for let's focus on reading pre reading for four year olds or things like that and have them be able to answer questions and teach them the things that they're going to need in order to comprehend, even at the very preschool level. The key here is to learn what to teach, in what order, and that you can learn through reading my new book, Turn Autism Around, which I think really does lay out nicely what to teach, in what order, especially for young kids. I do talk about hyperlexia in the first couple of chapters, we can use hyperlexia to improve articulation to improve other things like eating. And for older kids who can read but not understand, we should be working on comprehension and might be able to use textual prompts like I did with Nick as well.

Next Steps for Helping a Child With Hyperlexia:

Mary: So what are your next steps to helping your child or clients with hyperlexia and autism? You can check out the video blog I did a while back called Hyperlexia and Autism. You can read the Turn Autism Around book and you can consider joining one of my two online courses. One is the toddler preschooler course and the other, of course, is called The Verbal Behavior Bundle. You can learn about either of these courses by attending a free online workshop at MaryBarbera.com/Workshop. I hope you enjoyed the solo show on Hyperlexia and I'll be back right here next week.

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