WE’VE GOT ISSUES: Children and Parents in the Age of Medication
1. What were some of the assumptions you started with when you began writing this book?
I assumed that children were being grossly overdiagnosed and overmedicated. I assumed that society’s neuroses were being turned into pathologies in children; that what was being diagnosed as disorders in them was everything that was wrong in the competitive, high performance, driven, anxiety-filled world of childhood and family life in America today. The basic assumption was that those disorders, which no one seemed to have had when I was a kid – weren’t real, or were at least being diagnosed far more frequently than they ought to have been. How I knew this, I don’t know. Mixed in with the thought that the diagnoses were bogus was the idea that the medications used to treat children didn’t work; that they were a palliative for parents; and that parents were searching for an easy way out of their kids’ problems rather than looking at themselves, their families or society in general. And all of that rested on a basic disbelief in the direction that modern psychiatry was taking and a basic disrespect for parents who seemed to me to be willing to sacrifice their kids to their own ambitions and laziness. It was easy to have all these views. They were, and still are—although perhaps to a slightly lesser degree—the basic lens through which a lot of children’s mental health issues continue to be viewed. (For example, there’s still a lot of disbelief out there that things like ADHD or bipolar disorder are real. A lot of people still believe these problems are being grossly exaggerated and over-treated and think this is happening because parents want to “perfect” their kids).
2. What happened as you started working on the book, trying to report the various pieces of it?
As I started working on the book, I very quickly ran into problems. When I tried to back up the idea that what these kids had wrong with them wasn’t real, it became impossible to prove. I contacted experts – prominent psychologists and psychiatrists I’d seen quoted in the media indicating that kids were being overdiagnosed or overmedicated, people whose beliefs, I thought, paralleled my assumptions – and they didn’t actually believe that the mental disorders I was asking about weren’t real. And those who did believe that disorders like ADHD were socially constructed forms of disease tended to be people who were out on the fringe. The websites where I was finding articles agreeing with my point of view often were linking back to Scientology sites or other hard-core antipsychiatry groups and staking out ideological positions. I increasingly began to wonder about some of the things I thought were obvious and true. And when I talked to parents of children with mental health issues about my assumptions I encountered real hostility. One friend in particular just looked at me when I told her that I thought kids with nothing wrong with them were being overdiagnosed and that medication didn’t work. She forcefully asked, “How do you know that?” I would later learn that her son, who was ultimately diagnosed with Asperger’s Disorder, had seriously contemplated suicide at age six, had violent outbursts and paranoid episodes by age eight, and had begun holding the family hostage to his destructive rages by his early teens, and that my friend had gone through an ordeal of her own in trying to get him the best possible treatment. Something wasn’t right. I just couldn’t find answers to prove that I knew what I thought I knew.
The notion of these kids being symptoms of something wrong in society, “canaries in the coal mine,” as it’s often said, worked as an intellectual construct, but it broke down whenever I talked to a parent of a child with mental health issues. Once I listened to parents’ stories, the intellectual construct fell apart.
3. Millions of parents struggle each year with how to help their children suffering from disorders like autism, Asperger’s, attention-deficit/hyperactivity disorder (ADHD), bipolar disorder, obsessive-compulsive disorder, and the like. What sort of challenges do these parents face as they try to make the right decisions about their children’s health?
These parents not only have to struggle with understanding their children’s disorders and finding the right treatments, but they also have to contend with enormous self-doubt and, often, skepticism and even condemnation from people around them who believe they’re exaggerating their children’s problems and pathologizing them. It is very difficult for them to find their way, particularly since it’s so hard to find doctors who can really take the time to explain treatment options to them and so hard to find institutions they can trust for good information.
4. One of the central ideas of this book is that there’s a real dividing line, a gulf of experience and understanding that separates these parents from those whose kids are untouched by these disorders. What is it that people need to know about this gulf of experience? And why is it so significant?
It is very difficult to understand what it is to have a child with mental health issues, because when a child has a real disorder it isn’t just a question of having symptoms that everyone has at one time or another. Everyone is sad sometimes; that doesn’t mean everyone is depressed. Everyone is anxious sometimes; that doesn’t mean we all have anxiety disorders. Everyone these days gets distracted, but that doesn’t mean we all have ADHD. Not all kids are suicidal. Not all kids have panic attacks. Not all kids struggle to keep their minds focused for a single math problem. These are not variations on normal child behavior. The differences of degree are real and significant. Not acknowledging the reality of children’s problems, minimizing what are real and often really difficult conditions, denies children the possibility of getting better.
5. A lot of what you’ve written in this book goes against received wisdom. You’re not a doctor. What do you say to those who question your standing to make the arguments you’re making?
I’m not a doctor but I interviewed a lot of doctors and I did what I know how to do as a journalist, which is to talk to experts, listen very carefully, read a lot of information, and pull it all together. One of the reasons the book’s notes section is so long is that I wanted to show that I had done my homework, that I had been careful, that I had been accurate, and that I had read everything I could get my hands on. There was a certain amount of anecdotal data I collected from parents, but I was determined, above all, to let the facts lead me in whatever direction they would.
6. Some people feel very strongly there’s an epidemic of “legal drugging” of our kids going on. They might see this book as formal justification for drug companies, or for physician practices or health plans that promote prescribing medication in a void, without comprehensive care. What’s your reaction?
I’m not defending drug companies, nor am I saying meds are the answer to every problem. And I’m certainly not in the position to be issuing medical opinions. What I am trying to do is approach this, and write about it, as a journalist. I’m describing a social phenomenon and how we ought to talk about it. Needless to say, the issues you’re mentioning here are all nightmare issues for parents who end up in situations where they’re considering putting their kids on meds. When you talk to doctors about it they’ll talk about levels of risk, and the risk of nottreating—which carries a risk of its own—compared to the risk of treating. Doctors have an ability to think abstractly and dispassionately about these issues. They can think in terms of whether, for example, the risk of taking ADHD meds is less than the risk of getting in a car crash because you don’t take ADHD meds.
I say throughout the book that children are not getting sufficient comprehensive care. Too often they’re getting meds without proper therapy or follow-up. Parents aren’t getting enough time to sit with doctors to talk about options. It’s all too expensive. And there are not enough specialists. We really need to be thinking in the direction of providing more and better options so that kids can get more comprehensive care. I also go on at length about drug companies and their practices and why they’ve completely lost the public’s trust. But I do think it’s a mistake to conflate entirely the negative activities of the pharmaceutical industry and what’s going on with child psychiatry today. It’s understandable, given how many psychiatrists are in the pay of Big Pharma, but it’s just too simple to say it’s all about drug companies pushing their products.
7. You spent a lot of time talking to as many parents as you could about how their children came to be diagnosed, and how they came to agree to give their kids medications (if medications were called for). What did you learn?
Time and again I heard the same story. Nobody was rushing to have their kids diagnosed. They all hated giving their children medications. It became more and more important to me to tell that story, to change people’s perceptions, to cut through perceived wisdom and the shrugging-off of those parents and their kids. I also came to understand that while there’s a lot of good that can be done for children and that children can get very good help, most of them don’t get the mental health care they need. And even when they do get mental health care, it’s rarely top-quality care. They get what their parents’ health insurance will provide, or what they can afford, which isn’t much. We’re at a moment in time where there’s the potential to do a lot of good for kids with mental health issues, and instead a lot of bad things are being done. That’s not going to change unless we start asking some big, important questions. But those questions have to spring from a place of compassion, not judgment and blame.
8. How many kids in this country have mental health issues?
The estimates range from 5 to 20 percent. There’s a wide variation because the numbers depends on the degree of severity. There’s the 5 percent who have severe mental issues. Then there’s the 20 percent whose mental health issues affect their abilities in some ways but who are still able to go about life the way other kids do.
When talking about children’s mental health issues, you’ll sometimes hear people dismissively say, “Well, they’ve all got something now.” One thing that was important to me was to try to determine exactly what “all” represented. Clearly, the biggest number—20 percent—is a sizeable minority, but it’s far from “all.”
9. Why is there so much resistance to the idea that a fair number of children require psychiatric treatment and medication? We’re willing to believe that something like diabetes has a genetic component—that it shows up in childhood and should be treated as early as possible. Why don’t we accept that the same could be true of mental health disorders?
I think in part it’s because the idea is so new to us. When we were kids we didn’t know other kids with these problems, or at least we thought we didn’t. We all went to schools with boys who were constantly in the principal’s office, or getting into fights on the playground. We all knew kids who got into drugs in high school or were always getting into trouble. But we didn’t use terms like “depressed.” We didn’t think those kids might have a problem, let alone something like ADHD. They were just “bad.” If you don’t have the vocabulary for a concept, it doesn’t exist.
We’re also sort of primed to believe there’s something wrong with children, with childhood, and with family life today. We live in an insanely competitive and pressured time. A lot of us don’t like the parenting that goes on in our time. We just assume that the hypercompetitive, overbearing parenting we see so often these days is going to lead to problems in our kids. These are all naïve assumptions as to why children actually develop mental health disorders..
But they make sense to us – they seem logical. We tend to create and believe in narratives to explain what’s happening when things go wrong with kids. But what if not every problem has a cause that makes sense to us within this kind of narrative framework? What if some kids are just born with brains that work a bit differently? What if what we do as parents isn’t all-determinative? These are upsetting notions, because they undermine our sense of causality and control. Contemporary psychiatry, which is so biologically focused, simply goes against the grain of how we think about ourselves as people.
10. Your book laments the missed opportunities there are these days for putting science to its best possible use in treating children with mental health issues and also looks at ways that the benefits of scientific progress have been squandered – notably in the ways that the pharmaceutical industry and some psychiatrists have betrayed and lost the trust of parents. But you also point to stories of progress. What sort of progress has been made?
There are more medications now to help children than ever before, and forms of therapy that have been proven effective. Kids with mental health issues can get better and are able to participate more broadly in life than ever before. They’re not facing the same stigma they once did, nor are their parents as isolated as they once were. If you place the experience of the mentally ill child at the center rather than on the sidelines of the debate—in other words, if you keep in mind this is about children suffering rather than simply being symbols of the ills of contemporary life—then the developments of the past few decades truly become a story of progress.
11. One of the big questions that so often pops up in discussions about kids with mental health disorders is “Are there really more of them today, or are we merely seeing and counting them differently?” You say supposition is all we really have to go on in trying to find an answer. Why doesn’t good data exist?
If you go back beyond 1980, the nomenclature for various psychiatric disorders was completely different. Before the 1970s it wasn’t believed that children suffered from depression. The same can be said of bipolar disorder before the 1990s. The diagnosis for autism, as it’s formulated now, didn’t exist until 1980 and the publication of DSM-III (the third revision of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders). There was also no diagnosis called ADHD prior to that year. As for Asperger’s, its diagnosis didn’t exist until 1994. There’s simply no way to quantify disorders that didn’t exist and weren’t defined as such in the past.
12. Why is there such a huge difference between what outside observers assume when thinking about the kids being diagnosed with mental health issues and what the parents of these kids are seeing and living through?
Many outside observers assume that what these kids are going through is normal and trivial, and that with better parenting, or at least more realistic expectations from parents, the problems will just go away. But for the parents of kids with mental health disorders it’s not a question of their kids getting B’s instead of A’s. It’s not about their kid having a temper tantrum like all kids do, or simply behaving badly. And it’s certainly not about their kids failing to live up to their expectations. It’s about kids who threaten suicide, or a girl who spends two hours every night locking and unlocking the front door. It’s about the son who makes a fuss about wearing the same shoes every day because he’s sure that if he doesn’t his mother will die. These are not the normal vicissitudes of childhood. This isn’t “normal stuff.” It’s a different level of experience, a different degree. And that’s what’s often missing in how these issues are discussed and framed.
13. In the chapter on the use of psychotropic medications in kids you mention the dizzying array of damning numbers that have been making headlines over the past ten years. Why do you say the numbers don’t really tell much of a story?
Because the story isn’t clear. Some numbers—like the often alleged 600 percent increase in Ritalin use in the 1990s, and the frequently reported “fact” that up to a fifth of white fifth grade boys are on ADHD meds—have turned out, upon examination, to be just plain wrong. Others lend themselves too easily to distorted meanings, unless you put them into context. For example, how meaningful is it to know that in the 1990s antidepressant use tripled if you don’t know that prior to the 1990s—i.e., before the age of Prozac—antidepressants were pretty much never given to kids at all? How huge does that tripling seem if you find out that, at the end of this nothing-to-something transition, there was still only a tiny percentage of kids—one half to 1 percent of all children—taking antidepressant meds?
It’s certainly highly worrisome to know that too many kids in foster care, for example, now get medication—multiple medications—without therapy or proper support for the traumas they’ve endured, but it’s more troubling to think of what happens to those who, like the vast majority of disadvantaged children, get no treatment at all. The story is complicated. What makes this topic difficult is that there are no pat answers. People like to have certitude. That’s why you see all these sweeping statements. But when it comes to these numbers you invariably end up saying, “Yes, but…” The truth is mixed. There are a lot of gray areas. And gray areas are hard to talk about.
14. Why do you consider this a pivotal moment for mental health in America?
We are at the brink of never-before-seen opportunities for scientific progress when it comes to mental health. For one thing, the past couple of decades have seen a lot of big advances in understanding how the brain works and in determining what treatments are actually effective. There’s a vast body of knowledge to back up many of these treatments, but it doesn’t necessarily get out in a consistent way to parents. There’s still a lot of confusion and quackery out there. So you end up seeing many parents running in circles, trying to figure things out on their own. And because of the way health care is delivered in this country there’s not a lot of opportunity for them to sit down and talk to doctors at length.
It’s a pivotal moment, too, because along with advances have come abuses. The drug makers have acted cynically and gone too far in their direct-to-consumer marketing and advertising efforts, in the promises they make, and in promoting off-label uses for medications that are potentially quite dangerous. Doctors have helped erode the public’s trust by doing unofficial marketing for drug makers. So you have good and bad mixed together. Not surprisingly, the bad has gotten a lot more attention than the good.
15. Our impulse is to see children with mental health issues as victims, the “canaries in the coal mine” of our sick, out-of-whack society. Can societycause the kinds of disorders we’re seeing in kids?
The prevailing view is that children’s mental health issues arise from a subtle interplay of genetics, biology, and environment. The metaphor that’s always used is that genes load the gun and the environment pulls the trigger. If the environment alone was the problem, we’d be seeing epidemic levels of these disorders in kids. Despite all the hyped-up headlines, the numbers just aren’t that huge. Everyone I’ve talked to believes society or parenting does play a role, but you have to have fertile terrain for those outside pathogens to take root and cause problems.
16. There’s a perception out there, and not a false one, that it’s the kids from the wealthiest homes who get the most diagnoses and the most and best services. For example, the most competitive schools often show disproportionate numbers of students with learning disabilities. The most affluent school districts across the country register the greatest number of children getting special accommodations in school, including things like extra time when taking their SATs. People end up feeling this is all about wealthy parents “gaming the system” in order to get even greater advantages for their kids. But you say this situation reflects a much larger and darker reality. What is it?
The larger and darker reality is that only parents with considerable means (and the time and the savvy that usually accompany such means) are able to work our school systems to get the services and accommodation to which kids with issues are entitled. Even the basic special education services that public school districts are legally required to provide for children with learning disabilities or other issues are very difficult to access for parents without time and considerable energy and resources. It’s thus not surprising that households where the parents don’t have the time to advocate for their kids, or the money to take on school systems, are disproportionately given short shrift when it comes to their kids getting the resources they deserve.
17. You pull no punches in hammering away at the pharmaceutical industry and most particularly the alleged cozy relationship that exists between psychiatrists (and doctors in general) and big pharmaceutical companies. You also devote significant time to looking at how agencies like the Food and Drug Administration (FDA) and the National Institutes of Health (NIH) have allegedly been co-opted by Big Pharma. How do we change this?
Things have already started changing. In the wake of several recent, highly publicized scandals there has already been a lot of “housecleaning” going on. More stringent regulations have been put in place, particularly at the NIH. Universities are self-policing more, and many of them have taken steps to make their researchers’ relationships with drug companies more transparent. More limits are being placed on allowable levels of collaboration and the kinds of money doctors and researchers can receive. And most prominent medical and academic journals now require authors to list their industry affiliations at the end of their articles. At some point we may even see legislation for creating a national database that lists doctors’ relationships with Big Pharma. We’re clearly entering a moment of correction, and that’s as it should be.
It’s unrealistic to say doctors shouldn’t work at all with Big Pharma, because that’s how research gets done (and the government certainly doesn’t have the money to foot the bill entirely on its own). Some collaboration is necessary. But stricter rules are also a necessity, and doctors have to find it within themselves not to work as a shadow arm of the drug industry. For one thing, they need to own their own research. One of the major downsides to having the pharmaceutical industry run its own show on the drug trials they’re paying for is that they own the data collected during the trials. They’re the ones who decide when or whether to publish the results. This has led to a number of instances in which companies have suppressed data showing their drugs are ineffective or pose greater risks than medications already on the market.
18. What’s your goal in writing this book?
For parents of children with mental health issues, I’d love it if they come away from this book with a feeling of being in community with others. I want them to feel less misunderstood, alone, and stigmatized. For those who don’t necessarily have children with “issues”—and particularly for those who, like me, were functioning on autopilot, recycling received wisdom about children’s mental health without questioning it—I hope this book will open their eyes. If the book makes these people see that things are more complicated than they seem, it will have served its purpose.
19. The debate over health-care reform is very much on people’s minds at the moment. What sort of reform do you think we need when it comes to mental health care for children?
The first thing that needs to be done is to make sure mental health care is included in health insurance packages to begin with—it is in some, but not in all by any means (and legislation passed in recent years guaranteeing parity for mental health care only applies to people who have mental health coverage in the first place). I think reimbursement rates need to be increased, and we need to reexamine what services are eligible for reimbursement. (Those child psychiatrists who do participate in health insurance aren’t paid to do therapy, which means they can’t provide the best standard of care recognized by their profession. It means they are essentially boxed in to doing nothing more than medication management, solving each problem with pill after pill.)
And changes are going to have to come from practitioners as well. Child psychologists and psychiatrists need to make themselves available to people who can’t necessarily afford full fees. There are only about seven thousand child psychiatrists currently practicing in this country, and they’re overwhelmingly concentrated in the big cities. That means in some rural areas, there are no child psychiatrists—or even child psychologists—at all. It also means many child psychiatrists have huge waiting lists. As a result, they don’t need to take on patients whose only means of paying is through health insurance. That’s why I’d love to see health care reform that also includes a mechanism for incentivizing med school students to go into specialties where they’re really needed, like child psychiatry.