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Irlen Syndrome: The Medical Breakthrough No One Saw Coming with Helen Irlen

Dr Daniel Amen and Tana Amen BSN RN On The Brain Warrior's Way Podcast

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.

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Dr. Daniel Amen: Welcome to the Brain Warrior's Way Podcast. I'm Dr. Daniel Amen.
Tana 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.
Dr. Daniel Amen: The Brain Warrior's Way Podcast is brought to you by Amen Clinics, where we have been transforming lives for 30 years, using tools like brain SPECT imaging to personalize treatment to your brain. For more information, visit AmenClinics.com.
Tana Amen: The Brain Warrior's 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.
Dr. Daniel Amen: Welcome to a very special week. We are here with Helen Irlen. Helen is the founder of the Irlen 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.
Helen Irlen: I know. [crosstalk 00:01:25]
Dr. Daniel Amen: 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 gotta be 25 years ago.
Helen Irlen: At least. Absolutely.
Dr. Daniel Amen: 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. So, Helen is the founder of the Irlen 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-
Tana Amen: I do.
Dr. Daniel Amen: ... about her sister. But, welcome. Thank you for spending this week with us.
Helen Irlen: Thank you.
Tana Amen: Yes, we're so excited to have you.
Dr. Daniel Amen: Tell us how you discovered this.
Tana Amen: Yes.
Dr. Daniel Amen: What's the backstory?
Helen Irlen: Oh good. That's always an interesting concept. Backstory is I guess one, that I'm a divergent thinker, and that I think outside the box. And I had 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 neuro psych test, I'll identify all of 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. 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 [pogs 00:05:10].
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 have been through vision therapy. I could go on and on, but-
Dr. Daniel Amen: So, how did you discover it was light that was the problem?
Helen Irlen: Ah, how did they discover there was light. That's always fun. That's like, by chance. But we were going through all of the different methods that have ever been purported to help somebody who was struggling with reading, and ... 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. So I started with my group, and trying this out, and we put the red overlay down and never even got to the red green glasses, which blocked 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.
Tana Amen: Oh.
Helen Irlen: And we went from that point to robbing the theater department and borrowing every color theatrical gel and had it all over 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.
Tana Amen: This had to be a huge breakthrough for dyslexia.
Helen Irlen: 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-
Tana Amen: What they needed.
Helen Irlen: Yeah, all the other issues that they were having. They were all related to the same thing.
Dr. Daniel Amen: Which is a visual processing problem.
Tana Amen: That makes so much sense.
Helen Irlen: When we go visual, we have to go visual brain processing though, because when people hear vision, they think eye. And it's not your eye that reads and processes-
Dr. Daniel Amen: Well I guess because I'm a neuroscientist, I think of brain.
Helen Irlen: Brain. Yeah, you think brain-
Dr. Daniel Amen: Right, 'cause it's gotta 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.
Tana Amen: Oh, that's so fascinating.
Dr. Daniel Amen: 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. We had a ring of fire scan, you know, this brain that was working way too hard, and it just settled down.
Tana Amen: That's fascinating.
Dr. Daniel Amen: 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 Irlen Syndrome?
Helen Irlen: It varies depending on the population. General population and 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, you know, and it's so uncomfortable to do it, that population is about 12-14%. 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-
Dr. Daniel Amen: So that's a significant percentage of the population. It's 10 times the number of people that have schizophrenia or bipolar disorder. It's about the same number of people that have ADD, and a lot of people with ADD or ADHD have the Irlen Syndrome and they don't respond fully to the traditional treatments.
Tana Amen: But this is really important, because as a mom, I'm sitting here thinking, 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, or as parents I should say. 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.
Helen Irlen: Mm-hmm (affirmative).
Tana Amen: And they start thinking that and feeling that from people.
Helen Irlen: Right.
Dr. Daniel Amen: And then acting.
Tana Amen: And that's a terrible thought.
Dr. Daniel Amen: So, before we have to end this first podcast-
Tana Amen: And that's not true.
Dr. Daniel Amen: ... what are the hallmark symptoms of the Irlen Syndrome? When should people suspect it?
Helen Irlen: Okay. When you have children or adults and you find that you skip words, skip lines, lose your place when you're reading, 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.
Dr. Daniel Amen: You can't say nobody, 'cause we ask about it on all of our intake forms.
Tana Amen: Now.
Helen Irlen: Except for you. You guys are special.
Dr. Daniel Amen: No, for a long time we've been doing this.
Tana Amen: But you use [inaudible 00:11:39]-
Helen Irlen: 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 Irlen 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." 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."
Dr. Daniel Amen: Wow.
Helen Irlen: He thought that was normal.
Dr. Daniel Amen: 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 of us, we just walk on the escalators, 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.
Tana Amen: Or I've seen people jump onto it.
Dr. Daniel Amen: 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.
Helen Irlen: Yup.
Dr. Daniel Amen: 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.
Tana Amen: If you're enjoying the Brain Warrior's 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, feel free to give us a review or five star rating, as that helps others find the podcast.
Dr. Daniel Amen: For more information, give us a call at 855-978-1363.