On Friday, April 29th, former MMFS Director of Admissions and current trustee Deborah Edel interviewed 2016 Adam’s Prize Honoree Harold Koplewicz about recent changes in the field of learning disabilities, the impact of terminology on treatment, and the Child Mind Center’s Healthy Brain Network program. Below is a transcript of their conversations. Some of the questions have been edited for length and clarity.
DE: It’s a pleasure to talk with you today. Though I know neither you nor I go as far back as Samuel Orton [an American physician who pioneered the study of learning disabilities in the 20s and 30s], we’ve both been in the field for a long time, and I’m wondering if you could speak to the trends and changes you’ve seen in the field of learning disabilities over the course of your career.
HK: I think one of the major changes has been the recognition of dyslexia, more so than any other learning disability, and the ending, or the beginning of the end, of stigma, because more and more famous and successful individuals are coming out of the closet. That’s very different than 25 years ago, when I learned about dyslexia from a psychoanalyst at Columbia who told us that the reason we saw more dyslexics in poor neighborhoods was because children there were more likely to witness primal scene material. Primal scene material in English means that they saw their parents having sex. And the reason they were more likely to witness primal scene material was that they lived in smaller apartments and sometimes had to share a bedroom, and when they went to school, they couldn’t concentrate because they were thinking about their parents. I was a really good student so I wrote that down–seeing primal scene material gives you dyslexia–but very early in my career I started to see lots of kids with dyslexia whose parents lived in houses with five bedrooms or six bedrooms. The fact that those two things are true–that lots of poor people have dyslexia–doesn’t mean that one causes the other. If anything, it’s most probably that since dyslexia runs in families, and dyslexia will impair your academic functioning in a mainstream setting that doesn’t give you accommodations, you are less likely to make money because you are less likely to be successful in getting up the academic ladder of high school and college or whatever kind of training you need.
I’ve been very fortunate in that I have been able to sit for thirteen or fourteen years, once a year, with a successful individual who has dyslexia [for Child Mind Institute’s. annual Adam Katz Memorial Conversation]. Jonathan Mooney was the first person I talked to, who wrote this book called Learning Outside the Lines, but then Barbara Corcoran and Chuck Close and Ari Emanuel and Trudie Styler. What was really very striking about these conversations was how long it took them to hear that they were dyslexic, how many years they had to believe that they were stupid. Trudie Styler is a very successful producer and the wife of Sting. While having a conversation with her, I said, “How could someone figure out in a small little village in England that you have dyslexia?” And she said, “Well, my mother thought I had a lazy eye, that I wasn’t doing well in school, and so we went to the doctor. The doctor said to my mother, ‘She doesn’t have a lazy eye, she’s just backward,’ which was the equivalent of saying she’s mentally retarded back then.” As soon as [Trudie] said those words, this very cool, very sophisticated woman looked like she was going to break down and cry. We used to have to wait decades to help kids like Trudie know what they had and we didn’t have treatments that could be mass produced. So I think that the most important thing that’s happened in the field of mental health and learning disabilities is recognition. We have gotten better at recognizing that this is a real disorder. People like Guinevere Eden, who has been able to image the brain of dyslexics vs. non-impaired readers, can show you that kids who have dyslexia just don’t use the power of their brain enough, and when you teach them how to read with a multisensory approach they’re actually reading English as a foreign language, they’re using two sides of their brain the way we’d read Spanish.
The other piece is that we tell people it’s a chronic illness or a chronic disorder, that there’s no quick fix. There’s not a pill, there’s not ten sessions of this or ten sessions of that, but we can help remediate it. You will be able to read but it’s not going to be as easy for you as it might be for other people. And it doesn’t mean you can’t become a neurosurgeon, that you can’t become a great lawyer or a great businessman like Charles Schwab or David Neeleman or a great actor like Orlando Bloom. Every one of the people I interviewed talks about this as worse than their depression, worse than their anxiety, worse than other things because it ate at their self-esteem. If you could think about what it must be like to go to work every day and feel a sense of failure, most of us would quit. These kids don’t have that opportunity when they’re younger but they can’t wait to get out of school.
I have a great story about Orlando Bloom [who has dyslexia]. When I interviewed him, he said, “It’s a gift, it’s just a gift.” My middle son has severe dyslexia and has had tons of interventions. He was having dinner with Orlando and he said, “I just want to understand something. You did say this is a gift, right?” and Orlando said, “Yes, Adam, it’s a gift. It’s made me more creative, it’s made me more this, it’s made me more that.” And my son said, “I’m not sure that’s true. I think that this is an equal opportunity disorder. I think there’s a lot of people who aren’t that creative and get dyslexia and I think there’s a lot of people who are average who get this. So as far as I’m concerned, if you could just tell me where I can return the gift, I’d like to return it because I’m really tired of always having to work extra hard. I still look at a book and it seems like a mountain. I know I can climb it but it would be really nice if I could read faster, if I could write smoother.” I think we do a disservice to kids when we say it’s a gift for the simple reason that asthma is not a gift, diabetes is not a gift. It’s unfortunate but it’s not crippling, and the most important part is that it doesn’t make you stupid. It just makes learning harder.
DE: One of my follow up questions to that is we use the term “dyslexia,” “learning disabilities,” “learning differences,” sometimes you hear illness, sometimes you hear disorder. Do you have a particular belief about terminology?
HK: I actually don’t use the word learning difference on purpose because I think we all have learning differences. The whole population has learning differences. That’s just the nature of the population. There are groups of people who have different learning styles. It’s a bell-shaped curve. Some people take notes, some people can listen and absorb information, some people have to read very carefully, some people can skim, some people do outlines. But that’s not significant enough to take you into those tails of the 93rd percentile that cause enough distress and enough dysfunction that insurance companies should give you coverage to do something about it, to evaluate it, that the government should be required to provide you with accommodations. It’s not just a few traits that are quirky, these are real disorders.
What’s very interesting about psychiatric illness and learning disabilities is that parents feel bad. “I did something wrong.” They feel bad about themselves and feel sorry for their kid. And yet, if you make the diagnosis of diabetes or seizure disorder or cancer, you’d say, “I’m very sorry. This is terrible news I have for you. Really terrible news. Now, what are we going to do about it? Ok? Let’s roll up our sleeves and figure it out. You, Mom, and me, we’re all on the same side, we’re going to fight this disease or manage this disease.” But it takes two to seven years from the onset of symptoms before parents go to the doctor on average in the United States. And on top of everything else, they don’t like the medicine, and I don’t just mean the pills. I get this all the time: “What does it say to the kid that we have to remove him from Horace Mann?” You’re saying, “Horace Mann is the wrong school.” That’s all! “We as a parent have to find the right school for you. That’s our job.” We’re so fortunate that we can pick, in New York City at least, the right school. “We’ll look at all the schools that are available and then we’ll pick from those. And if Mary McDowell is the right school for us then great. If not we’ll go to Churchill or Gaynor or Gateway or Windward and we’ll figure this out as a family.” You would think that’d be easy. We’re talking about schools that you have to go to for three years, five years, six years, that can actually remediate so that if you don’t want to tell people you have dyslexia, you don’t have to.
DE: Do you see a difference between dyslexia and learning disabilities?
HK: I certainly think that there are other learning disabilities besides dyslexia, and I think when you say learning disabilities it could be so many different things. I think dyslexia has an advantage in that it’s been studied so much. We know so much more and that’s what makes it so much easier than auditory processing or sensory processing. We also have very effective ways of remediation. It’s the one, you know? But, when I say learning disabilities I mean all of them.
Calling learning disabilities what they are is the motto here: it’s real, it’s common, it’s treatable. We tell that to parents all the time. It’s real, it’s common, it’s treatable, and you’re entitled to accommodations. If you’re a good parent, if you don’t neglect this, you’ll evaluate it and figure out if there’s an effective treatment.
DE: And accommodations are not a gift.
HK: Yes, it’s a right.
DE: Tell us a little bit about the Healthy Brain Network program, because it really opens up a new direction.
HK: I’m a big believer in the diagnostic manual. Why? Because if you as a mother go to see a doctor in Los Angeles or in Chicago or in Austin or in New York, you should feel that you’ll get the same diagnosis, that we’re all working from the same manual. Three years ago Tom Insel, who at the time was the director of the National Institute of Mental Health, said, “We spend around $1.5 billion a year on clinical studies–prozac vs. zoloft vs. cognitive behavioral therapy–but I think we should start looking at regions of the brain. We may find out that regions of the brain don’t correlate very nicely with this manual but that’s okay. We’ve got to do better.” A lot of people were very upset with him because they felt like, “I’ve spent my whole career doing clinical research and now you’re telling me you won’t fund it? So now my career is going to end unless I start thinking about the brain?”
Well, I think he’s right. I think you need a transformation here, and the only way you do transformational change is you disrupt things. What we want to do is create a biological marker of mental health disorders in the brain. It’d be the equivalent of the strep test. You cough. You cough. I cough. Turns out you have a virus, you have a bacterial infection, I have an allergy. I get an antihistamine, you get tea and rest, you get an antibiotic. We don’t have that for the brain, and the only way we could do that is by mapping the brain.
This is NOT a sexy project. This is hard, hard boring work in the respect that we want an enriched sample. We don’t want an epidemiological sample. We don’t want to look at normal vs. abnormal or typical vs. atypical because we can tell that already. That doesn’t help me. That doesn’t get me to bacterial, viral, allergy. I want atypical to atypical to atypical. The way to do that is to start a program that will create the atlas of the developing brain of children with mental health and learning disorders. So we’re giving away 10,000 clinical evaluations at no cost for five year olds to 21 year olds. It’ll include first and foremost a psychiatric evaluation and neuropsych testing, which is kind of wonderful because you can go back to your school with it.
Second, this foundational data set should be more than a bunch of genes or a bunch of neuroimages or a bunch of psychiatric diagnoses. We should think hard about the other things that we worry about. So why don’t we put a needle in the kid’s arm and get some blood for genetics as well as stem cells later on down the pike? You know, I’m 63, so this project isn’t really for me. I am your ultimate optimist. You don’t start a non-profit in 2009 without being an optimist! I have a very interesting background. I have Holocaust survivor parents who were incredibly optimistic. “This glass is FULL with water,” you know? Delusionally optimisitic. It must be genetic because I bought into it.
You also want to look at cardiovascular fitness. That’s the only thing that keeps you from getting demented is supposed to be 20 minutes of cardio every day. None of us do it, or most of us don’t do it, but we know it, so we should look at that. And we should look at nutrition and fitness. The reason for that–and it doesn’t make logical sense–is that kids with psychiatric illnesses are more likely to get obese, even the ones who take Ritalin or Dexedrine. It doesn’t make logical sense. Obesity puts you at higher risk for psychiatric illness, and psychiatric illness puts you at risk for obesity.
Now, the other genius part of this–and this isn’t my idea, so I can call it genius–is the fact that I have a forty year old or forty one year old who is in charge of this project. He has 123 of his own peer-reviewed articles so he could be a full professor anywhere but would rather be at the Child Mind Institute. He believes in open science. He believes in sharing the data before he publishes. He says, “Harold, if you really want to get there before you die, you better accelerate the pace of research. And you can’t afford to pay thousands of people who are just going to do research here. But if you share the data, people who would never look at child mental health or child learning disabilities are going to look at it.” So computer engineers from Virginia Tech look at our data. Geneticists from Rockefeller look at our data. Statisticians from Johns Hopkins figured out they could tell the difference between a hundred kids with ADD and a hundred kids with ADHD. They could see patterns with statistical analysis that we couldn’t see and radiologists couldn’t see. By doing it this way, I have essentially partnered with 2,650 scientists from around the world who want to look at our data. I couldn’t have done that if I stayed at NYU or gone to Columbia or UCLA because they want the a-ha moment. But if a scientist who uses our data gets an article published in the New England Journal of Medicine, all we get is an acknowledgement that the data came from Child Mind Institute Bio Bank. So be it. If we’re going to be leaders, we should not only talk the talk but walk the walk.
In the last five years, even before we started the Health Brain Network, we have only published forty-three articles, which is very respectable. Very respectable. But 632 articles have been published by other people using our data. We’re now the leader in open science in children’s mental health. When we started, we had 18 people. Now we have 131 people on the payroll and 50 volunteers, most of whom are graduate students. We’ve become one of the most competitive training programs for graduates. It speaks to a great success on our part but I think it also speaks to need. And I’m hopeful that we’re getting to a tipping point.