In today’s episode, I’m talking about kids who recognize letters and can possibly read even before they can speak. This syndrome is called hyperlexia, and I’ll be discussing whether it’s a sign of autism and also what to do about it.
Each week I provide you with some of my ideas about turning autism around. So, if you haven’t subscribed to my YouTube channel, you can do that now.
For some of you, you know that I was in denial for over a year when my husband first mentioned the possibility that my first born son, Lucas, had autism. And how you know this is because I basically tell the story a fair amount in my video blogs and also in my new podcast which I started in January. You can already listen to the first series of episodes, and subscribe to my new podcast Turn Autism Around.
What is hyperlexia?
I did talk about hyperlexia a little on my first podcast and I thought this would be a great opportunity to discuss a bit further. As I said, I was in denial and what got me out of denial was I went to see another mom of a child with autism who was part of the Hyperlexia Association. This was back in the late 1990s and I just had my first email account, AOL. I was just able to search the internet and I must have searched for … Lucas had the ability to recognize letters and he had a strong association memory.
For instance, we went to Friendly’s Restaurant and they had a welcome sign, W-E-L-C-O-M-E and he would go up to the sign and he would say, “W” and then instead of saying E, he would say, “Egg,” because we must have had a puzzle with an E that covered an egg picture and then he’d say, “L” and then he would say, “C” or he would say, “Cat,” another puzzle association. And so this made me feel like, well, at least he’s using language. At this point, I had no idea how to teach him more language. I had no idea how to get him to echo my words or to fill in the blanks. I had no idea how to teach Lucas anything.
But I must have been searching for the ability to recognize letters and found hyperlexia. And since I didn’t want to admit that Lucas might have autism, I thought, well, maybe he has hyperlexia and not autism. And so I started searching and I came across this woman who was local and she allowed me to go to her home. I’ll call her Nancy and she told me all about hyperlexia. I didn’t have Lucas with me on the visit. This was the spring before his third birthday and I told her that my husband mentioned autism as a possibility but I was hoping it was just hyperlexia and a speech delay.
And she told me about the Lovaas study and how kids with severe autism could recover with ABA therapy and even if Lucas just had speech delays or if it was very mild autism, I really needed to find out what they were doing for these kids with severe autism to recover them to help Lucas the best. On my way home, I got Catherine Maurice’s two books, Let Me Hear Your Voice and her second book which was published in 1996 called Behavioral Intervention for Young Children with Autism.
Once I had her two books, I read them very quickly and realized that Lucas had autism just by reading the descriptions of kids. So she was very helpful in getting me to at least look into the possibility of autism. Then, I became a behavior analyst and started working with my own clients. And in 2010, I started working predominantly with the early intervention population, the one to three-year-old children. And I remember one child for instance who was not speaking at all, but he seemed hyperlexic to me.
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And what hyperlexia is, is the ability to recognize letters and to read, to have a hyper-awareness of letters and sometimes, numbers and to be able to read phonetically without any teaching. And this is what happened to several of my clients. They presented with hyperlexia, they loved letter puzzles, they could do puzzles much beyond their age level, but they weren’t speaking.
One of my clients, I’ll call him Connor; he was only 21 months old when I got him. The parents were both in engineering medical fields, very intelligent. And I said, “I think he’s hyperlexic,” and I explained how this was what I would consider a splinter skill. We want to use it to our advantage but we really need to get him talking and not rely on this as a splinter skill.
One day, just because I was curious, I wrote out the word “Apple”, “Cat”, and a few other things. And I put out pictures of the words and then I handed him the word without saying what it was. I didn’t say, “Cat, match with cat.” I just handed him the words and had him match. He matched completely fine, and I said to the parents, to Connor’s parents, “He can read but this is a splinter skill. We would really want to get him talking and we can’t focus on this.”
How does hyperlexia relate to autism?
So, the next week, I go to see Connor and they have him set up with a Mac computer in front of him and they’re like, “Connor, type Barney.” He was a big Barney fan too, so he would type “Barney” and then he looked up and smiled. “Type apple,” and he’d spell and he looked up and smiled. I’m like, “What about we’re not focusing on this, do you not understand?” The reason why we don’t want to focus on it is because actually hyperlexia can become an issue where kids are just so hyperfocused on the stats to baseball or the letters to reading but they don’t have the language comprehension that goes with that skill.
So we want to focus on some more important things first. I, in my programming, use the VB-MAPP which is by Dr. Mark Sundberg. And the VB-MAPP level 3 skills include reading, writing, and math, and that’s for our 30 to 48 month-old is when you’d want to start that. But for somebody with very poor language skills who’s down in level 1, we do not want to be hyperfocusing on letters.
If you have hyperlexia, do you have to have autism? Yes and no. When I was calling, looking into hyperlexia, the experts said, “Well, you need to get him diagnosed with autism or PDD-NOS at the time.” And as I was like, “Well, I don’t want him diagnosed with autism. I want him to have hyperlexia,” and she basically told me that it was one and the same.
But there are some experts and I do know some very bright precocious children who learned to read early and they have normal social skills and normal language skills, so it could be a precocious child. But if you have a very significant language disorder plus this hyperlexia with very poor language comprehension, it’s probably autism plus hyperlexia.
I would love it if you would join me on my podcast and hear more about my journey, the lessons I’d learned, hear some interviews with moms as well as professionals. My podcast is really full of great information that might benefit you. To learn more about my podcast, to listen, and to subscribe, go to MaryBarbera.com/podcast. I will see you right here next week.
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