What You Need To Know About Psychiatric Medication For Children

Episode Transcription

Dr. Nicole Beurkens: 

Hi everyone, welcome to the show, I am Dr. Nicole, and on today’s episode, we’re talking about the topic of psychiatric medication and what parents need to know about how these meds have come to be such a major part of treatment, and what the evidence really shows about their effectiveness. I want to preface this by saying that psychiatric medication is a sensitive topic. There’s room for differing opinions on this, and certainly, I believe that medications have a place in the treatment of some people, some of the time. However, it is important for us to look at what the data says about psychiatric drug use and the effectiveness, especially when we are talking about children and teens, because there’s a lot that’s not known about that and a lot that’s being done to kids without good research evidence. Most people are not given the opportunity for true, informed consent when it comes to these drugs. And that means providing parents and patients with thorough information about the potential benefits, potential risks, how to stop the medications if desired, and much more. The reality is that these medications can do more harm than good and parents need to be aware of all the possibilities so they can make the best decision possible for their children.

You know, as a clinical psychologist, I was trained back when I was in school that a combination of psychological therapies and medication is pretty much the standard of care for people, but many years ago, I read a book that changed my thinking about this, and in fact, changed the focus of my work around the issues of medication. Anatomy of an Epidemic is the name of the book, and it did literally change how I view the role of these medications and how I practiced. That’s why I am beyond thrilled today to have the author of that book, Robert Whitaker on the show with me. Let me tell you a little bit about him. 

He is the author of four books and co-author of a fifth, three of which tell of the history of psychiatry. In 2010, his Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness won the US Investigative Reporters and Editors Book Award for the best investigative journalism. Prior to writing books, he worked as a science and reporter at the Albany Times Union newspaper in New York for a number of years. He is the founder of madinamerica.com, a website that features research news and blogs by an international group of writers interested in rethinking psychiatry. I can not tell you how much I’ve been looking forward to this conversation, welcome to the show, Mr. Whitaker. 

Robert Whitaker:

Ah, thank you, Nicole. It’s a real pleasure and honor being here. 

Dr. Nicole Beurkens: 

So, let’s kind of start at the beginning, because I’m curious about this. How you got interested — so you’re a journalist, an investigative reporter — how did you get interested in researching and writing about psychiatry and these medications in the first place?

Robert Whitaker: 

Yeah, it was a really serendipitous thing, a backdoor-type thing. I actually left daily journalism for a while, then I had a publishing company that really focused on the development of new drugs, and that’s when I became aware that there were a lot of marketing impulses as drug companies were bringing new drugs to market. Then I found out within the trials of the new atypical antipsychotics, this goes back to the 1990s, which were heralded as these breakthrough medications. There had actually been a lot of deaths in the trials. The FDA — I used a Freedom of Information request to find out what the FDA thought of these new drugs, they said there’s really no evidence they’re better than the old ones. And that just got my interest in psychiatry and what the story it was telling to the American public and how accurate it was. Was it in sync with science? And I want to say, by the way, I did a series, I covered a series for the Boston Globe that really looked about abuses of psychiatric patients in research settings, and one of the causes we focused on was these clinical trials for new drugs for schizophrenia, in which they were yanking people off the drugs abruptly. Anyway, I just want to say one thing. When I began, I was a believer in the conventional story, that was being told to the public, which was that scientists had discovered — psychiatric researchers had discovered that mental disorders like schizophrenia and depression were due to chemical imbalances in the brain, and we now had new drugs that fixed those imbalances, much like insulin for diabetes. That’s a story I as a newspaper reporter covering science had often written about, and it’s a story of great progress because it’s indeed — we all know how complex the human brain is. And if you can isolate the very molecule that supposedly causes madness or depression or anxiety, or kids not to like school, and you can fix that? That would be the most extraordinary medical advance, I think ever. And I believed it. Why wouldn’t I? I called people up and they said, “Yeah!”

So what happened to me, was I got into this by looking at, first of all, the results from the trials of the atypicals, I found there was a disjoint — what the public was being told was different than the science. And that really launched me into this larger investigation of psychiatry, and one of the things I looked at was the chemical imbalance story because I believed in it. And the moment that it clicked for me, or that I said, “Uh-oh, something is not right” was this: When I was doing that search for the Boston Globe, everyone was telling me these drugs fixed chemical imbalances. “Great”. I said, “Can you just point to the research that found that for example, people with schizophrenia had too much dopamine, or people with depression had too little serotonin.” And you know what they told me? “That’s a metaphor. Like insulin for diabetes. The chemical imbalance.” I said, “Well, I understand like insulin for diabetes is a metaphor, but just tell me where you found this to be true?” And they literally told me — the first guy tells me. Then I go call another expert, and what they began to tell me was this: “Well, we didn’t actually find that. But we know these drugs are good for people and we use that as a way to tell people to take their drugs.” I was shocked. I didn’t believe it. 

So one of the first things I did in the first book I wrote about this, Mad in America, is just look at how the hypothesis arose. It arises in the 60s based on the — by understanding the mechanism of action of the drugs on the brain, so for example, antidepressants are thought to upsurge serotonergic activity. So they hypothesized depression is due to too little serotonin. But then of course, they have to investigate the hypothesis. They have to see, do people with depression have too little serotonin? 

And here was where I was so stunned: As early as 1984, the National Institute of Mental Health, investigating that hypothesis said, “We’re just not finding anything wrong with the serotonergic system.” Now they continued to do research. And in 1998, the American Psychiatric Association, in its own textbook said, “No, we had this hypothesis, we investigated it, and it wasn’t true. We didn’t find it to be true.” Now at the same time, that’s what the textbook is saying, the profession, as a whole, is telling a very different story to the public. So that’s how I got into this. It wasn’t because I had an interest in psychiatry. It wasn’t that I had any belief of some sort of ideologic about some other approach. It was because I was a believer, my job as a newspaper reporter was to make sure that the story being told to the public was accurate, and I stumbled into this whole story, where when you dig into the science, it’s out of sync with what is being told to the public. 

Dr. Nicole Beurkens: 

I’m so glad that you shared that because I think that’s important for people to understand: You didn’t start investigating this because you believed there was anything wrong with the story being told. In fact, you didn’t start investigating these because you believed there was anything wrong with the story being told. In fact, you were kind of trying to do your part to say, “Yup, I have investigated this, and what we all are being told, this is true.” And yet, you found such a different whole realm of information and all of that that really changed your thinking on it, and I think that’s important for people to know. I, much the same way, was indoctrinated into that whole approach through my schooling, that this is how it works. And it wasn’t until I started questioning it as a result of seeing things in my own practice. Before I read your book, I already was having a lot of misgivings and questions. I was seeing more and more kids coming into the clinic on more and more medications, doing worse and worse. I started going, “This doesn’t make sense.” If these medications actually work well, if they do what we’re telling people they do — I am doing what I’m supposed to do and referring a kid with, let’s say, severe anxiety, they’re not getting fully better with the treatment, I am providing, I am referring them for psychiatric medication, they’re getting put on that — why is it that they’re not doing markedly better. In fact, why is it that I am seeing more and more kids who actually are developing more problems and doing worse over time? Those were the things that I began to see and began to think about. Of course, you do that very privately in your own head from fear of speaking out too much about that, but really, then, when I read the research and the things that you presented in your book, it totally clicked. I thought, “This makes perfect sense.” In light of what my clinical experience is with people, that the story that we’ve been told, in fact, what I was telling and recommending for patients to do because it’s what I had been taught is not necessarily the best thing to do. 

So I think both of us come at this from the standpoint that we believed the story, we believed that, then we got new information and our stance on that changed, which is really what, to me, this episode is about, having this conversation with you. I know that there are so many of our parent-listeners who are having these same thoughts, whose kid has been on what I call the rollercoaster of psychiatric medications, who aren’t seeing their kids get better, and they’re having these same sort of wonderings like, “Hmm, is this really what we should be doing? Is this really effective?” And I think the background and the information that you’re providing will be so helpful to those parents to give them just a different perspective on it.

Robert Whitaker: 

Yeah. I think, just to pick up on what you just said, the book you introduced, Anatomy of an Epidemic, did begin with a question that you were arising at in your own clinical experience. So my question was a bigger sort of public health question, but it absolutely reflects what your clinical experience was. So we have more and more people using these drugs. We start giving them more and more to kids, and yet, all the markers of public and mental health in this field, rather than go down, which is normally what happens if you develop an effective therapy, and you get more people treated, the burden of that problem should diminish in society, right? But by every standard, things have soared. The number of people on disability, adults, the number of children needing help, the number of children going on disability. So that became a question. Why? If we’re getting more people treated with drugs that are said to be so helpful, is the burden increasing, societal-wise? And then what you find is this really gets into an extraordinary betrayal of the American public. What you find, of course, is drugs get approved because they diminish symptoms a little better than placebos, for the short terms. Like 6 weeks, we say okay, that’s a sign of effectiveness. But of course, what we want to know, what parents want to know is how is it going to affect my kid over longer periods of time? A year, two years, three years? How is it going to help them grow up to be successful adults, healthy adults? So what I did in that book, Anatomy of an Epidemic was look at something different. What is research telling us about the long term effect of these drugs? Which is a very different question than “What happens in clinical trials?” And what you find again and again in the longterm’s literature, and it’s absolutely tragic, disheartening — is you find that on the whole, with adults, we’ll start with adults: The drugs increase the chronicity of the source, in other words, people are likely to be more symptomatic years later than in the natural course of these disorders. Second of all, there’s also a lot of this worsening, where they go from a milder disorder to a more severe disorder, now you see that in the literature, and you actually see researchers saying, “What is going on?” And they start even talking about the biology and what’s going on. But none of that gets to the public. Now, as far as with children, the medicating of children has to be understood as not a medical enterprise, but as a marketing enterprise. So what you see over and over again, say with the antidepressants. In the early 1990s, if you look at the American Psychiatric Association’s own textbook, the anti-depressants, the older ones, the tricyclics and the monoamine oxidase inhibitors, they weren’t found to be effective for children under 18, even over the short term, okay? And moodiness was understood to be something that happens to teenagers and all, right? 

So what happens? What happens is that by the early 1990s, the makers of antidepressants start saying, “Adult market is getting saturated, we’ve got to expand into the new market,” and they identified the children as a new market. And that’s what happened, and the studies of antidepressants in children fail, even over the short term. But my point is this: The reason we’ve got such an expansion of drugs in children was driven by market. They just needed to expand their markets for the new antipsychotics, the SSRIs, and then of course, they bring new stimulus on market, etc. And tragically, we could go over all the research on this, none of it showed a benefit long term for the kids. Anti-depressants didn’t even show over the short term, double the risk of suicide, they did a big anti-psychotic trial by the NIMH, and you know what they concluded? That was I think, early 2000s. Few kids can tolerate or benefit from these drugs over the long term. But that isn’t mentioned. And how about the long term study of stimulants? They found that by the end of year three, being on the drug Ritalin was a mark of deterioration, not of benefit. They didn’t tell us that. And that’s the betrayal here, in order to protect markets and build these markets, they couldn’t communicate these poor results and these poor long term results. And then there are clinicians like you saying, this is my training, I’m going to help these kids. And you’re doing what you’re told, and then all of a sudden you see kids getting heavy, their physical health, their problems are increasing, and you’re going, “What’s going on?” and yet, it was in the science all the time. Honestly, when I’m going on a show like this, when I think of kids and having their physical health compromised, it compromises their social growth as well, their cognitive health, their cognitive growth, and none of these kids are giving informed consent on this. They’re not the ones doing this. It’s one of the most tragic things that I think have happened in our society in a long time. 

Dr. Nicole Beurkens: 

I completely agree, and I love that you call it a betrayal, because it is. I mean, you’re talking about here’s these studies going back a couple of decades or more now that showed that these things are at best ineffective, at worst, cause more damage, and yet that information is not what has gotten disseminated. And we’ve gotten to a point where the general public and even healthcare providers, the story is these are the things that you need to be doing, and I want to delve into a bit more about long term damage and all of that, but I want to go back to — you said you started the book with the question about: If these things work, why are so many people doing poorly? And I just really want to spotlight that for people a moment, because that really hit me. When I first read that — I was like, “Yeah, why is it when you look at the statistics of how many people are permanently disabled or classified as permanently disabled, maybe started out with a diagnosis of mild to moderate depression or a mild generalized anxiety disorder? And then over a course of a couple of years of receiving medication treatment — now, there are symptoms in their functioning to the point where they are classified as permanently disabled, unable to work — these are the things that I think most people aren’t aware of or thinking about, how these medications play a role in actually making people sicker and less functional over the long term. 

Robert Whitaker: 

So the specific data that I was investigating in that 2010 book was this: In 1987 we had 1.25 million adults actually receiving government disability because of the mental illness. So not just said to be somewhat disabled, that’s why they were getting government payments. By the time I was doing this book, it was around 4 million people. This is in 2008, and this was 1987 I started this. So 1987 was when Prozac came to market, and this really launched this boom in the use of drugs. So we had this threefold increase in disability from 1987 to 2007, and as far as kids, in 1987, there were about 16,000 kids said to be disabled by a mental illness, and therefore, their guardians or parents got a disability payment. By the time I was doing that book, it was around, I think 600,000. They saw this great expansion. So that’s why I began to look at this question about long term outcomes and also what you’re talking about, this movement from a lesser disorder to a bigger disorder.

I want to say one thing when we talk about long term outcomes on an aggregate scale. So one of the things when you say a drug is worsening, which I wrote about in the book, is increasing the chronification of the disease, what you have to do is as a baseline, so what’s the natural course of the recovery from that? So let’s say depression. Even hospitalized depression was before seen mostly as an episodic illness. People would have an episode and then they could expect to recover, like 85% would recover in some period of time, and then at least half wouldn’t even another depressive episode, it would be a single time. So when we say aggregate, in order for a drug to do no harm, it has to improve on the natural recovery rate. So even if you have some people doing okay on the drugs long term, if you’ve increased the number of people who are still symptomatic years later or who have moved on to a more serious thing, you’ve actually done harm in the aggregate. But I know what’s going to happen, people are going to say, “Hey, I’m doing fine on my drugs!” That’s true, okay? But what we’re talking about is outcomes in the aggregate, and the data is there quite powerfully, even for adults. With kids, it’s even much more powerful. That’s the first thing to know. When we talk about increase in chronification. Now the second thing you’re talking about really goes to the heart of this booming disability. What’s driving the rise in disability rates, and by the way, I was eventually asked to give a presentation to a workgroup in the parliament in the United Kingdom because they were investigating this, why are we getting these rising disability rates? 

So as a part of this, I looked at every country I could find, developed country that had adopted widespread use of antidepressants in the Prozac era. Every one was having soaring disability rates due to “effective disorders”. Now why is it? It’s two things. We changed depression into a more chronic problem. B: You do see some other dysfunction coming on. Sometimes some cognitive problems, some other physical problems, and the big thing is this: You dramatically increase the people who end up with a bipolar diagnosis. So we used to look at people who had an initial episode of depression: What percentage of people went on to bi-polar was very low. Once you had the antidepressants, the SSRIs, it became much higher, and basically, you see something like as many as 1 in 25 people who wouldn’t have gone to bi-polar, now become bi-polar. Well, you’re going to get a surge in bi-polar diagnosis and that’s what we saw. We saw it with the adults, we saw it with the kids. And that’s what’s driving the disability numbers. So you see with the anti-depressants quite clearly two things: Increase in chronification, meaning more likely to have sort of recurring depression, and two, this increased risk of moving to bi-polar and three, some other dysfunctions that come with this, some cognitive problems and there are social problems related to the sexual dysfunction, all that sort of thing. So that’s what I try to do in this book. 

What I try to do is lay out the evidence in a clear fashion for a late public. But the point is it is a review of what’s in the scientific literature, and really stretching across many decades. 

Dr. Nicole Beurkens: 

Well, that’s really what I say to parents. I find it a very helpful book to use with parents wherever they are in their journey of thinking about medications for their kids, using medications, I say this lays out the research that you need to understand to make an informed decision because unfortunately, none of this is going to get communicated by the child’s prescriber. In fact, most parents, what they say is — “Had I known, had I been told what the possibilities were for the long term problems, for the issues we’re dealing with now as a result of going on these medications, had I known that at the onset, I never would have started it.” And I have adult patients who say the same thing for themselves. When I give them the information, when I talk about the role that their medications may be playing in what’s happened to them and what they’re experiencing, and then they look at the data and they go, “Had anybody made me aware of this, I would have made a different choice.” That’s really — I get passionate around people being able to make an informed choice. I am less interested in ultimately the decision that parents or individuals make about whether to use these drugs or not, and what I’m more interested in is that they’re able to make a decision based on having all the information they need, and that is something that just does not happen across the board, at least in our healthcare system.

Robert Whitaker: 

By the way, I couldn’t agree more with you. Medicine is based on an informed consent choice. That’s supposed to be a fundamental principle. It’s actually a legal principle. Just to say these drugs are effective in alleviating symptoms a little bit better than placebo over the short term is just one point of information. If you’re not giving this longterm information, you’re not giving informed consent at all, and that’s the betrayal. Now I have to say, most providers have no idea about this either because there’s a whole big machine. Frankly, a money-making machine, which consists of two parts. It is the pharmaceutical companies, but it’s also psychiatry as a profession really became invested in drugs as their products. So other people got to do the therapy. So for them to start promoting, as an institution, as a guild, to start saying, “Uh-oh, we have this problem with long term outcomes,” it’s a little bit like a carmaker saying, “You know our car doesn’t really run very well after little time.” So they’ve been in this bind where you see that they very selectively promote certain information. The way that they spin things.

Can I say one thing I think that really highlights why this is so?

 Dr. Nicole Beurkens: 

Yeah.

Robert Whitaker: 

And this goes back to the chemical imbalance story. So, remember they say that people with depression, for example, have low serotonin, the drugs up serotonin and that fixes it, and now you no longer have this imbalance you started with? Actually, the science found the exact opposite. So what the science found was that before you go on a drug, there really is no known abnormality with your serotonergic system. But now, because your brain is this extraordinarily neuroplastic organ with all these feedback loops, so you go on an antidepressant which artificially ups serotonergic activity. Your brain, in order to maintain what researchers call a homeostatic equilibrium, its normal activity, it puts the brake on its own serotonergic activity, its own physiology changes. So the brain starts putting out less serotonin and those receptors in the brain actually decrease in number. This is a model, a paradigm for understanding all psychotropic drugs. And by the way, I’m repeating a paper here by the former head of the National Institute of Mental Health, Steven Hyman. This isn’t me, this is him, it’s a 1996 paper. He says these drugs perturb normal activity. Your brain now, in order to main normal function, goes in this opposite direction. So if you up a neurotransmitter thing, your brain will put down the brake. If the thing puts a brake on it, your brain will put down an accelerator. And Steven Hyman wrote, the brain is trying to maintain a normal functioning by doing this, and he says, “At the end of this compensatory process, the brain is now functioning in a manner that’s both quantitatively and qualitatively different than normal.” So you were told these were normalizing agents. In fact, research shows that they are abnormalizing agents. Once you understand that model, you can understand why maybe this isn’t going to work so well long term, and you can also understand why it becomes so hard to come off the drugs, because your brain has become used to it. That’s for me, when you understand the science of how drugs affect you, and you understand there’s no known pathology, and then you’re interrupting normalcy, do you really think that’s going to have a good outcome for people? 

And finally, switch to kids: A child’s brain is constantly adapting, evolving in response to the environment. That’s what all our brains do, what the child’s brain is like, hyper-responsive to the environment, and you’re now throwing a wrench into that normal development of the child’s brain. And that wrench can affect physical health, metabolism, sexual function — so do you really think that’s going to help your socialization, going to help your kid grow up and thrive? Since we all know how hard it is to grow up?

Dr. Nicole Beurkens: 

It’s such an important point, and I want to focus in there for a minute about this issue of giving kids these medications and the side effects that happen, but also, from the research standpoint of most people are not prepared— that the drugs that are used and prescribed for kids with psychiatric conditions: Number one, most of them haven’t been studied or approved for use in children, and number two, nobody has looked at long term outcomes from these. So I often say to people that we’re using a generation or two of kids as guinea pigs here because we do not know, we do not have a scientific, research-based understanding of what happens when you start giving a 3-year old, a 5-year old, a 10-year old these kinds of psychotropic medications. We don’t have any information to really know what that looks like at 18, at 25 at 40, but the data that is coming out on people who started these medications maybe in their teen or young adult years, we’re seeing early onset dementia kinds of symptoms as they get older. I mean the preliminary data on this isn’t good, but I think it’s important for parents to understand: We don’t have long term outcomes data of what is potentially likely to happen to kids who started on these medications so young, and that is a scary thing. 

Robert Whitaker:

Yeah, this is just a huge, horrible experiment. When we talk about long term studies with kids, it might be a year, like the one on antipsychotics. I know one study of stimulants has been longer. But even those studies don’t really, in any way, sort of canvas the larger life of people: cognitive function, physical function, social function. That sort of thing. Maybe they look at how some symptom is, years down the line. Yeah, it is a huge experiment. All the evidence shows it’s a disaster, and particularly, if people stay on a lot of these meds, especially if they’re on more than one, and all the load that that puts on, I think we’re going to see — if we were able to follow kids who were first put on meds at 3, 4, 5, 6 and see their health when they’re 25, 30 — you’ve named a lot of the real problems: Early onset dementia is sort of their sign of that, obviously there’s diabetes, there’s poor health, there’s cognitive problems. 

I don’t know if you want me to mention this, some of the stuff is really scary. The animal research is really scary. There’s even scary stuff related to fetal exposure to drugs, and you know, for the antipsychotics, we do know those shrink the brain. Now, I can’t imagine any parent being told, you know, these drugs have been shown to shrink brain tissue, brain volume, that would be really scary. I’m just saying this is part of the information that you’ve talked about, this is a huge experiment and there’s no one really saying: “This is what’s going to happen to your kid at 25,” there’s no data.  

Dr. Nicole Beurkens: 

No, and even some of the data that has come out and been purported to show that these are effective for kids, now we find out after the fact that the studies actually were fraudulent. The Paxil study is a great example of a study that was done that supposedly showed that Paxil, as an antidepressant medication was safe and effective for teenagers, prescribers started using it, oh, yup this is approved, and then we find out down the road that oh, actually, that was wrong, that study was not accurate. Now, has that changed prescribing practices much? I haven’t seen that it has, but that information doesn’t get disseminated, it gets widely pronounced when they say something is effective. We’ve got some research! But then when it turns out that well, that’s not actually true, that story kind of gets buried. 

Robert Whitaker: 

Yeah, you know, this again goes to this question we talked about earlier, that the market for children — the use of psychiatric drugs in children is a marketing story, it’s not a medical story, okay? And what you’re talking about is when they began testing antidepressants for kids, which starts in the early 90s — what was the situation there? Drug companies, by this time, were paying all the academic psychiatrists to be their advisors, consultants, that sort of thing. We say in that world of institutional corruption is that the pharmaceutical industry had captured academic psychiatry. And what you see in the Paxil story is that the classic example is: First of all, studies were designed to favor the drug, and then when the results were poor, they were spun. Suicides that actually occurred in drugged kids would be dropped, or they would be added to the placebo controls. And what we have now, the public doesn’t know about this, is we have emails that came out during litigation and all, where they talk about the spinning. They talk about it among themselves, “Oh, this study is a dog! How are we going to present this!” and then they talk about how to spin it. The Paxil story in youth is an example. but think about this — I know parents who put their children on antidepressants, they’re teenagers, who then committed suicide on these drugs. 

Then they found out that in fact, in these trials, such as the Paxil trial, there was a notable risk of suicide, at least suicidal behavior and ideation among those treated with the drug. They weren’t told this. So imagine when your child commits suicide and you were told there was really no risk. That’s an example of what you’re talking about, this whole medicating of kids came during a time where the pharmaceutical companies had “captured academic psychiatry”. Basically every academic psychiatrist was receiving money from drug companies to be consultant advisers and speakers, and we can see that, when related to spinning of results, hiding of results — and by the way, because of this capture, it’s not just in pharma-funded trials. We’ve had trials funded by the NIMH, led by academic psychiatrists that are horribly spun! But of course they also have money from being speakers and all.

And just one thing, the people that helped build these markets, they didn’t earn 10,000, they didn’t earn 20,000. They earned millions of dollars for building these markets. So that’s what happened. It’s happened with the stimulant market, it happened with the antidepressant market, it happened with the antipsychotic market. Academic psychiatrists who were promoting this, given their continuing medical education, writing a textbook so often, were being paid huge numbers, and they were being told, “Oh, you’re just helping advance medicine.” But we see in the documents, the drug companies are going, “These guys are helping us build markets.”

Dr. Nicole Beurkens: 

I think what ultimately, what I see as so damaging from all of this for kids and teenagers, especially, is that they become defined early on in the process of having a challenge or an issue that very often is a normal adjustment issue, something that they would come through without having it be a chronic problem, even kids with more significant conditions like autism or those types of things: These kids end up being defined as there is a problem with your brain, there is an internal problem with you, that the only way to solve this is by giving you medication. So we give you a medication and then when you aren’t doing well, or you do worse, then we say, “Well, this is the progression of your illness, this is the progression of what’s happening to you. And now we need to give you more medication.” This is how kids end up on what we call this polypharmacy or these cocktails of drugs, and I see them everyday in my clinic, anywhere from two to ten different medications that they’re on! And parents are sitting back now and saying, how has this even happened? Which end is up? Kids are feeling like there’s something so wrong with me, and now they can’t even make sense of their own thoughts because they’re so overmedicated. Now they are 250, 300 pounds being put on metformin to try and keep them from becoming a type II diabetic. It’s just unreal when you step back and look at this. But I think that story that we are giving to kids and to young adults about that there is something so wrong with you that you’re not even doing well with these drugs, we have to give you more. That to me is just so tragic. 

Robert Whitaker:

Yeah, I agree. You got onto something here that I think is really profound. That’s the way we conceive of things. Sort of like a philosophy of being. If we were to go back before this whole medicating era of kids, we would understand kids have different personalities. They struggle at times, we have bullies, we have class clowns, we have nerds and we have all of this sort of thing. But we as parents would have understood that we wouldn’t — we understand kids grow. We also understand they go through phases. We also understand human beings have this resilience. They struggle, they have difficult times, but there’s this inner resilience. We also would have understood that, often, kids are responding to an environment, right? Maybe they don’t like their school environment, whatever it might be. 

Once we got these drugs, we changed the philosophy of being and raising kids. We said the problem is inside the kid’s head and there’s something wrong with that kid. Now the kid starts taking that on, right? You get diagnosed — Oh, I have something wrong with me. It’s not that I’m a normal person going through problems, I’m defective. I have something wrong. And that becomes a self-identity, which they carry forward with them. So rather than building up a self-identity of resilience, of strength, we say, “You’re weak. Something’s wrong with you. And you can’t overcome your problems.” And you know where we really see this? We see it on college campuses today. something like 25-30% of kids now arrive with a diagnosis and a prescription. I’m talking about most exclusive colleges too, and something like over 50% of kids now access counseling and mental health services during their time. 

Well, that’s because they’ve been primed to think of it things and problems within themselves and this is the way they overcome it. So that whole conception that the problem is your chemistry or something has a profound effect on your self-identity, and then, as you say, once you enter the system and you start getting the drugs, and now you’re having health problems and all the other problems that come with it. You’re not likely to say, “I’m being harmed by the drugs!” You’re saying, “Look at me, I’ve got this chronic illness,” and you can see how it all snowballs. But that philosophy of being is important too. How we conceive of resilience, what it means to be a kid, how kids grow up, that has all changed.

Dr. Nicole Beurkens: 

Absolutely. I want to touch on something you just said there that I think is important for us to talk about for our listeners, and that is this issue of — when people do start to suspect that maybe they’re not doing well on a medication. “Okay, I’ve been taking this, but boy, I’m not doing so well. I’m not feeling so well. It started out with this symptom, but now I’m having these other problems!” And people start to wonder, and parents start to wonder, “Is this helping?” I want you to talk about the process then that ensues, because what I see is when those questions are raised with prescribers, by and large, they’re told, “Nope, it’s not the medication” or “Well, maybe we just try you on a different medication or we need to add a medication”. And even the ones who say, “Well, okay, if you really want to try going off of it, I can reduce the dose, but I don’t think you’re going to do well.” Then when people don’t do well, often because of how the process is done of trying to get them off of the medication, the story is, “See? You are permanently damaged, this is a lifelong condition, you need your medication, you need to be compliant and keep taking this.” And I see that all the time, and I’d love for you to speak to that. 

Robert Whitaker: 

It becomes a self-fulfilling — here’s the problem, you go on these drugs, your brain changes. Now you try to come off — your brain got used to that, so you’re going to be vulnerable to withdrawal symptoms. The prescriber, who doesn’t ever want to — I understand this, but they don’t really want to take responsibility for possibly harming someone. They want to see that as a sign you needed the drug. But what the parents have to understand is — all users have to understand is your brain was changed, okay? When you try to come off, there’s this whole sense of how does the brain renormalize? What sort of symptoms are you going to have as you come off? And what we’re learning also in the research is that the renormalization can be more difficult than you think.

Dr. Nicole Beurkens: 

A lot more difficult.

Robert Whitaker:

Sometimes, you’ll get these persistent withdrawal symptoms. Honestly, if things haven’t worked well for you or for your kid, I think you need to say, “Is it the drugs?” And you need to try and see then, can you start coming off that to see what happens? But you have to be aware of what has happened to you. I am also involved with something, I helped start something called the International Institute for Psychiatric Drug Withdrawal. That’s an institute composed of people from many countries, leading researchers — I’m not a researcher, I just tell a story, who are trying to understand what happens with withdrawal, and they’re trying to develop withdrawal protocols. What everyone is saying is we’re flying blind sort of now because we’ve been using these drugs for 50 years, but we’ve never tried to figure out how to get people off. What you hear people told is exactly right, “Oh you’ll probably fail.” Why don’t you say, “I’ll try to help you do it well”? And second of all, the withdrawal symptoms are misunderstood as a return of “disorder”. 

But there is an increasing body of withdrawal literature, what symptoms you can expect, length of time, some protocols — I run a website called madinamerica.com, we’re actually newly building a withdrawal section with all this information, resources and all, we have a parents section as well. I know this can be a little gloomy for parents right now, there is pretty good evidence that children can recover coming off of these drugs much better than adults. That’s probably due to their neuroplasticity. So some of the longer term harms we’re seeing with adults with some of these issues, the good thing with kids, it seems like sometimes those don’t persist in the same way that they do with adults. But your point, and Nicole, I think this is really important for parents to see, if it hasn’t gone well for you or your kid, you do need to look at the drugs. By the way, if you’re on polypharmacy, that’s pretty much an example that it didn’t go well. There is no evidence for polypharmacy. I’m not a doctor, they can do their own research on this, but if things aren’t going well, shouldn’t you try to say, “Okay, let’s get the kid off and see what can happen?” And all I can say is they need someone like you to give them support and encouragement, especially during that time as they come off because all the research shows that withdrawal symptoms are pretty common and they can persist over time. But last thing here: I know so many people who finally got off and said, “Well, I got my kid back, I got my life back and thank God I tried this.”

Dr. Nicole Beurkens:

Absolutely and that’s the hope in it, and my clinical experience mirrors what you’re saying that kids by and large do well if they’re able to go through a process of weaning off of these in a way that is supportive of their brain and supportive of their family system, and they know what to expect, but it’s really being given that information. I mean look, we’re using the word withdrawal! The industry doesn’t even want to use that word, right? Discontinuation syndrome is the term they use, anything to avoid talking about the reality that kids and adults go through withdrawal and sometimes acutely. I think the thing for parents to be aware of is often when you bring this up with the prescriber, what they will do is a pretty fast taper that I liken to — I use the example of it is like pulling the rug out from underneath your kid’s brain. What we need to do is slow that down and taper in a way that allows the brain to start to function more normally again in the absence of that medication, and sometimes, that takes months or years to do that in a way that is safe and comfortable and effective for the child or the adult, but it can be done. The work that you’re doing with gathering people together who are trying to figure this out is so needed, because those of us as practitioners that are trying to support patients in this, we have been flying by the seat of our pants and trying to coordinate with each other, what have you learned about this — because these are not things that practitioners are taught.

Prescribers and other practitioners in mental health and even within the larger healthcare system are taught how to put people on these medications, they are not taught how to safely and effectively help them get off. So finding a practitioner who can help with that is so key because certainly, you and I are not advocating for people who had concerns about their child or their own medication to suddenly stop taking them or whatever, there’s a process for that to do it in a safe and effective way. 

Robert Whitaker:

Yeah, and you’ve again really touched on a point of betrayal. We have this system, we’re getting people off and we’ve never studied how to get people off correctly. It used to be thought, even with antipsychotics, that a 3-day withdrawal was a slow withdrawal! And as you say now, there’s a lot of effort to try to figure out what are good taper protocols. You probably know there’s a guy in the Netherlands who has invented tapering strips that allows you to cut on a more systematic schedule. One of the things you’ll see — so we’ve put up this withdrawal page and we’ve tried to summarize information that is also coming from user groups who have done this. 

There does seem to be a pretty unanimous report that you’ve got to slow this down. At the same time, it seems that it’s very individualistic. Some people need to go slower than others. Part of it is figuring out — is being responsive to the person, you know because it seems so individualistic, the responses to it. There also seems to be, for example, with some of these drugs, you can drop part of the dosage more quickly at the start, then you have to — the point is there’s a lot of unknown information, which is part of the tragedy, part of the betrayal. And it’s not just a betrayal of the users, it’s a betrayal of therapists like yourself. You weren’t given the information you need and now you’re sharing this information. All that I can say is this is why support is really helpful to have some understanding of what’s going on, someone to monitor you, someone to talk to you, etc. and sort of guide you through this process, and learn from it. Because going to your first point is, the old idea was, okay, maybe a couple of days and you’ll be fine. And all the user experience is saying you’ve got to slow this down. Who knows how slow?

Dr. Nicole Beurkens:

Right, and it is so individualized and so much of it depends on how long they’ve been on them, how many different drugs they’re on at the same time. There are so many variables with that, but I think to your point about hope when you said you hear from so many individuals and parents that , “Oh, I got my life back, I got my kid back,” I do want to emphasize that for people listening that no matter how complicated the situation may seem right now with your child, no matter how many medications they’re on, or what you’re considering — there is a tremendous hope that it can get addressed and your child can get better, even if they are already on several medications. 

Robert Whitaker:

Can I add one thing here? So much we know about the slower tapering need is coming from adults. Adults users. I know a couple of programs that actually get younger kids off fairly quickly even off of polypharmacy. By slowly, maybe a month or something. I’m not recommending anything. This is a moment of hope. I do know some places that have tried to withdraw, and I am talking about heavily medicated kids, quicker and they sometimes have been able to do it within a month. And they’ll find it’s sort of a month of difficulty, but then they’ll see that really, the kids start normalizing. By the way, I’ve seen some data where they take health data — like blood pressure, sugar levels and all, it’s like a returning to health for a lot of these kids. In other words, their physical measures renormalize. I just want to give a little bit of hope to parents. When we talk about real long periods of tapering, it’s really coming from adult patterns. We don’t even know the difference between pre puberty and the adolescent period. They may be different things as well. 

Dr. Nicole Beurkens:

But I think, to your point about the resiliency of kids’ brains and bodies, that’s what I see too. Even in some of the kids coming in who are morbidly obese, who now are pre-diabetic on multiple medications what we see is as we can help their system get more health and normalized in coming off the medications, in giving them the supports they actually need to be able to do well, what we see is those markers return to a more normal baseline level. So it is not the case that kids are destined now to be morbidly obese for the rest of their lives. Once we get the medications out of there and get their system working more like it used before the medications, those things do improve and I think that that’s important for people to know. 

 

Robert Whitaker:

You could also see this as obviously mind and body are interwoven, so if the body is returning to health, it’s probably a good sign of renormalizing.

Dr. Nicole Beurkens:

Yeah, absolutely. I know that we need to wrap up here, you and I could talk for hours and days about all this. I want to make sure that people know your website where they can get more information and support, madinamerica.com, right? 

Robert Whitaker:

Yeah, that’s it. And in addition, we have a bunch of writers for us, we do some original reporting. We have resources there too. We’re building up a withdrawal page, we have about drugs, about the long term outcomes, you can look at the research there so you can see what we’re talking about here. Now we’ve started a parents section — we actually have online support groups for parents, but also we have, okay what’s the knowledge about the research literature for the different classes of drugs for kids, which is different for adults. We also have a review of science on non-drug therapies as well, so they can at least explore some possibilities. We also do have a directory of providers that say they’ll help people taper off. So our goal with Mad In America, I just want to emphasize, is not to be prescriptive. Not to say people should do anything. We want to provide parents and youth and people with knowledge, information that they can make informed consent choices. 

Dr. Nicole Beurkens:

And it does a wonderful job of that. It’s a website that I visit time and time again, can’t recommend it highly enough. Definitely encourage all of you listening to check that out. And also the book Anatomy of an Epidemic and the other ones that you have written as well — really helpful resources and want to encourage people to utilize those. Thank you so much for being with us today and for having this conversation. It’s been really wonderful. 

Robert Whitaker:

Thank you for having me, I really enjoyed it. Thanks. 

Dr. Nicole Beurkens:

And thanks to all of you for listening, we’ll see you back here next week for our next episode of The Better Behavior show.