Change Your Brain Every Day - Irlen Syndrome: The Medical Breakthrough No One Saw Coming with Helen Irlen

Episode Date: March 4, 2019

While helping kids with learning disabilities, Helen Irlen struggled to identify the reason why neuropsychological testing wasn’t helping to find answers in so many cases. When she finally decided to think outside the box, the result was a revelation. In this episode of The Brain Warrior’s Way Podcast, Dr. Daniel Amen and Tana Amen are joined by Helen Irlen as she recounts the discovery of her namesake syndrome.

Welcome to the Brain Warriors Way podcast. I'm Dr. Daniel Amen. And I'm Tana Amen. In our podcast, we provide you with the tools you need to become a warrior for the health of your brain and body. The Brain Warriors Way podcast is brought to you by Amen Clinics, where we have been transforming lives for 30 years using tools like brain spec imaging to personalize treatment to your brain. For more information, visit amenclinics.com. The Brain Warriors Way podcast is also brought to you by BrainMD, where we produce the highest quality nutraceuticals to support the health of your brain and body. To learn more, go to brainmd.com. Welcome to a very special week.

We are here with Helen Erland. Helen is the founder of the Erland Center and now centers all around the world. She is an internationally recognized educator, researcher, therapist, scholar, and expert in the area of visual perceptual problems. She's a graduate of Cornell University. She's been in the field of education for over 40 years. That sort of sucks that we've done this stuff for so long. She spent 15 years as a school psychologist and 30 years as a child and family therapist and educational therapist. She's the founder and director of the Adult Learning Disabilities Program, assistant professor of

adult learning disabilities at Cal State Long Beach, instructor in psychology at Cornell. But, you know, Helen and I met, oh my goodness, it's got to be 25 years ago. At least. Absolutely. And if I remember right, you were giving a presentation at an adult ADD conference at the University of Michigan. And when I first heard about your work, I thought, oh no, that can't be possible because I never learned about it in medical school. And I never learned about it in my general psychiatric residency or my child psychiatric residency. And so as many people do to my work, they just dismiss it because they don't know about it.

But then what happened is I had a friend whose wife had severe migraines. And when she put on blue tinted lenses, she's not had a migraine since. And you know how debilitating that is. And so Helen is the founder of the Erlen syndrome. It's something I think about. I talk about nearly every day in my clinical practice. It has changed the lives of countless people. And Tana's got a great story about her sister. But welcome. Thank you for spending this week with us. We're so excited to have you.

And tell us how you discovered this. Yes. What's the back story? Oh, good. That's always an interesting concept. Back story is, I guess, one that I'm a divergent thinker and that I think outside the box. And I have been a school psychologist

testing children, doing all the psychoeducational testing for a number of years. And every time I tested a child that I couldn't identify as having a problem, and I went back into the classroom and watched that child struggle, it bothered me. I was saying, what are we missing from all the testing that we do? What are we missing? What are we not asking? Questions we're not asking. What are we not identifying? Whereas typically, everyone assumes if I give you a psychoeducational test or a neuropsych test, I'll identify all the factors that are contributing to your struggling in school or continue to struggle as an adult. So I thought outside the box and said, no, it's not enough. We need to think in a different way

and ask different questions. And I was lucky enough at that point to have the opportunity to do that because I was asked to start the first program for adults with learning disabilities at Cal State Long Beach. And I started the program saying, fine, it was a federal grant. We're going to do three things. One is I want a research component to it. And two, I want a counseling component, because as you know, if you've struggled, it just doesn't automatically go away. Those kinds of issues, self-concept issues, stay with you for a lifetime. And the third thing is we wanted what I thought would be a remediation program for these adults, but actually turned into, and nobody talked about it then, accommodations, which we do now all the time.

But we switched as an adult. As long as you had a way of getting there, even if you didn't have the skill, it didn't matter. So those were the three prongs. And it was fun because the adults had all been bright, highly articulate, and had struggled for a lifetime. And so they had parents who were really concerned because they couldn't understand why are they so bright, but why do they continue to struggle? So they had been through testing. They had been through remediation. They had been through vision therapy. I could go on and on.

So how did you discover it was light that was the problem? Oh, how did I discover it was light? That's always fun. That's like by chance. But we were going through all of the different methods that had ever been purported to help somebody who was struggling with reading. And not with this group that I had, who were bright, highly motivated, and had made it into a four-year college, but still struggling, right? And one of the things finally we tried after trying multiple things was they used to believe that you had to have a dominant eye in order to read. And they did eye occlusions where they covered one eye to train the eye.

And then they decided that wasn't working. So they used a red overlay and red-green glasses. And so I started with my group and trying this out, and we put the red overlay down, never even got to the red-green glasses, which block one eye, so they were basically reading with one eye. And one of my students, adult students, said to me,

you know, Helen, how you got me to recognize the fact that words aren't moving on the page? This is the first thing you've done with that red overlay that made it a little bit better. And that was the clue. And we went from that point to robbing the theater department and borrowing every color theatrical gel and had it all on the floor and have them go through now that they understood first what they were seeing that they shouldn't be seeing on the printed page

and they selected some overlays this had to be a huge breakthrough for dyslexia it was such a huge breakthrough for them but what was interesting to me is they came back and they found their overlay used their overlay documented where they had changes in reading rate, comprehension, flow, and fluency, and comfort, but then they complained, right? Like a bunch of children. You realize that I'm a therapist. Well, you made things better for us with reading. What about the fact that we're still struggling when we try to see things on whiteboards when we're in under fluorescent lighting, the depth perception issues. And so they were the ones who educated me about all the other issues

that they were having that were all related to the same thing. Which is a visual processing problem. When we go visual, it makes so much sense. Visual brain processing, though. Because when people hear vision, they think eye. And it's not your eye that reads and processes. Well, I guess because I'm a neuroscientist, I think of brain. Brain.

Right? Because it's got to go from your eye to your occipital cortex, through your parietal lobes. And we've actually done a number of scans before and after the glasses. And it seems like certain colors of the light spectrum irritate the brain. Oh, that's so fascinating. And that when you put on the colored filtered lenses or the overlays, the irritation goes down. And your brain actually settles down.

The first time I saw this on a scan, I was completely blown away that we had a ring of fire scan, you know, this brain that was working way too hard and it just settled it down. And that's fascinating. And it was stunning. So I went from my own ignorance to, wow, how many people, this would be a good question, in the population struggle with the Erlen syndrome? It varies depending on the population. General population, where you can compensate for it, so you still can kind of be successful,

but you're spending so much more time doing your work than anybody else, and it's so uncomfortable to do it, that population is about 12% to 14%. When you're looking at those that have identified problems in terms of school and learning, and particularly reading or copying or math, that number jumps up to 26% or higher. It's higher. So it's a significant percentage of the population. It's 10 times the number of people who have schizophrenia or bipolar disorder. It's about the same number of people who have ADD. and a lot of people with ADD or ADHD have the Erlen syndrome and they don't respond fully to the

traditional treatments. But this is really important because as a mom, I'm sitting here thinking, and I, and I've been through this with some of my daughter's friends and I've certainly been through my own issues with my daughter, you know, like we all go through as mothers,

um, or as parents, I should say, um, it's painful to see your child struggle in school. And especially when they tell you there's nothing we can identify, then you just start thinking, well, what is it? And people start saying, well, the thought comes up and maybe no one verbalizes it. Maybe they're just not that smart. And they start thinking that and feeling that from people right and then acting and that's a terrible thought so before we have to end this first podcast and that's not true

what what are the hallmark symptoms of the erlin syndrome when should people suspect it okay when you have children or adults and you find then you skip words skip lines lose your place when you're reading so So your reading becomes inefficient. And the other one is hard because people don't report it. And that is that you have to build breaks into reading. And if you stop and think about it, reading may be causing pain or strain or tiredness or sleepiness or even headaches or nauseous or dizziness. But nobody asks those questions. So nobody identifies it.

We can't say nobody because we ask it on all of our intake forms. No. You guys are special. For like a long time we've been doing this. But you screen for early. And if you're struggling because nobody asks, there is no reading test that talks about how does it feel when you read at a certain point. It's how you ask that question.

Because these symptoms aren't always present. They don't start immediately. They take time. For some people, it's the first word. For other people, it's maybe 20 minutes before things start to happen and they need to take a break. So it varies. And because no one's asking the questions, whatever you experience, you think is normal. And you would

be surprised about that. We had a student who had failed the bar twice come in to see us with his sister on one side and his father on the other side because he insisted he was bright and he couldn't have Erlen and he didn't have a problem. So when I asked him what reading was like for him, he says, well, you know, I start to get tired and I start drinking coffee after about a page. And this is a law student. And after five or 10 minutes, I'm drinking coffee nonstop. And then I actually have to hold my eyelids open so they don't close so I'm able to read. Wow. He thought that was normal. So reading issues, eye strain, light sensitivity, depth perception problems. One of those interesting things and you can tell

these people when you go to the mall because most most of us, we just walk on the escalators. Right. And you're not even thinking about it because your brain automatically adjusts and processes. These people stand at the bottom of the escalators and they watch. And with a fair amount of anxiety, they get on the escalator. Or I've seen people jump onto it. They also have trouble with sports because of the depth perception issues. It's more common after head trauma.

And I know that's an area that you're passionate about. So when we come back, we're going to dive more into how do you know if you have the Irlen syndrome and what are some of the things you can do about it? Stay with us. If you're enjoying the Brain Warriors Way podcast, please don't forget to subscribe so you'll always know when there's a new episode. And while you're at it,

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