Saving Normal : An Insider's Revolt Against Out-of-control Psychiatric Diagnosis, Dsm-5, Big Pharma, and the Medicalization of Ordinary Life (9780062229274)

by Frances, Allen

  How could this possibly happen? There were six contributors: wording changes in DSM-IV; heavy drug company marketing to doctors and advertising to the general public; extensive media coverage; pressure from harried parents and teachers to control unruly children; extra time given on tests and extra school services for those with an ADHD diagnosis; and finally, the widespread misuse of prescription stimulants for general performance enhancement and recreation.

  The most obvious explanation is by far the least likely—that the real prevalence of attentional and hyperactivity problems has actually increased. There is no reason to think the kids have changed, it is just that the labels have. We now diagnose as mental disorder attentional and behavioral problems that used to be seen as part of life and of normal individual variation. The most convincing evidence of this comes from a large study with a particularly disturbing finding. A child’s date of birth was a very powerful predictor of whether or not he would get the diagnosis of ADHD. Boys born in January were at 70 percent higher risk than those born in December simply because January 1 was the cutoff for grade assignment. The youngest, least developmentally mature kids in the class are much more likely to get the ADHD diagnosis. The birthday effect was almost as influential in girls. We have turned being immature because of being young into a disease to be treated with a pill.3,4,5

  The DSM-IV contribution was inadvertent and probably only a bit player in the selling of ADHD. We changed a few words so that the definition would be more female friendly—taking into account that girls are more likely to be inattentive “space cadets” and less likely than boys to be hyperactive. Extensive field testing predicted only a 15 percent increase in rates, but we were later blindsided by clever drug marketing which caused rates to triple. Until the mid-1990s, ADHD had occupied a tiny, sleepy corner of the vast and active pharmaceutical enterprise, barely worth noting. The stimulant drugs used to treat ADHD had been off patent for decades and could be purchased in generic form for pennies a pill. Total revenues of $50 million a year for ADHD medications amounted to no more than a rounding error in drug company financial reports. There was no advertising to patients or marketing to doctors. ADHD seemed a safe, no-profit diagnosis flying well under Pharma’s searching radar.

  Conditions changed dramatically a few years after the publication of DSM-IV. Several newly patented and expensive ADHD medications came on the market. Coincidentally, the drug companies had just been given the right to advertise to consumers—and did they ever take advantage of this with an all-media-all-the-time advertising fanfare. The blaring propaganda message was the usual—ADHD is extremely common, often missed, and accounts for why Johnny is a behavioral problem and isn’t learning in school. “Ask your doctor.” Armies of eager sales reps filled the offices of pediatricians, family doctors, and psychiatrists peddling a pill that would magically prevent classroom disruptions and solve home meltdowns. Parents, teachers, and physicians were recruited in an all-out effort to identify and aggressively treat ADHD.6,7

  There is lingering controversy on how much the tripled prevalence of ADHD should be the cause of celebration or serious concern or perhaps both. Some believe that the higher rates mostly reflect the useful identification of ADHD in people who were previously missed. This is partly true. No doubt increased diagnosis has been helpful for many children who otherwise would not have received a much-needed and appropriate treatment. Medication for these correctly diagnosed kids can (at least in the short run) improve learning, prevent restlessness, reduce impulsive outbursts, help them feel more comfortable in their own skins, and reduce blame and stigma. For children who really need it, stimulant medication is safe and effective—a real godsend to them, their parents, and teachers.

  But there is an unhappy flip side to this feel-good story. The gains to some have to be offset against the serious costs to others. Much of the increased prevalence of ADHD results from the “false positive” misidentification of kids who would be better off never receiving a diagnosis. Drug company marketing pressure often leads to unnecessary treatment with medications that can cause the harmful side effects of insomnia, loss of appetite, irritability, heart rhythm problems, and a variety of psychiatric symptoms. Add to this the emerging problem of stimulant misuse for performance enhancement and intoxication. Do we really want 30 percent of our college students and 10 percent of our high school students scoring prescription stimulants illegally so they can do better on a test or have more fun at a party? Monitoring the large, illegal secondary street and school market for stimulant drugs has even made it hard to have adequate supplies for legitimate purposes.8

  How can we cut down on loose diagnosis and excessive use of medication? Just a few doctors in each community are responsible for most of the overprescribing. Quality controls and shaming can dramatically tame their practice habits.9 Doctors also need education that, contrary to what they have learned from Pharma, the best approach to ADHD is a graduated “stepped diagnosis”—not “shoot first, aim later.” Diagnose early and begin medication quickly only when the ADHD symptoms are very severe, pressingly urgent, and classic in presentation. Whenever symptoms are mild or equivocal (as often is the case), it is best to sit back and have a period of watchful waiting. Often the symptoms will be transient—reactive to family, peer, or school stress. Sometimes the kid is just immature. Sometimes the problem is substance abuse or another psychiatric disorder that needs to be ruled out during the period of observation. If the problems persist but are not severely impairing, the next steps would be educational or psychotherapeutic in orientation. The final step of definitive diagnosis and medication treatment would be reserved only for those who fail to respond adequately to earlier steps. Unfortunately, there is no well-financed public and physician educational campaign to promote this sensible stepped approach. The drug company rush-to-diagnosis and mindlessly prescribe-the-pill message has dominated the conversation—turning many normally immature kids into prematurely medicated mental patients.

  Childhood Bipolar Disorder

  When I began psychiatric training forty-five years ago, we were not taught anything about childhood bipolar disorder (CBD). There was no point—it was so vanishingly rare that no one had seen any cases. I once evaluated a nine-year-old boy whose symptoms seemed bipolar, but my supervisor told me to stop searching for the exotic. His advice was “when you hear hoofbeats on Broadway, assume it’s horses out there, not zebras.” In those old days, we were undoubtedly missing some cases of childhood bipolar and sometimes withholding what might have been helpful treatment.

  But now the pendulum has swung wildly and dangerously in the other direction. CBD has become the most inflated bubble in all of psychiatric diagnosis, with a remarkable fortyfold inflation in just one decade. CBD satisfied three essential preconditions for excessive popularity: a pressing need, influential prophets, and an engaging story. The pressing need was created by the disturbed and disturbing kids encountered in clinical, school, and correctional settings. They suffer and cause suffering to those around them—making themselves noticeable to families, doctors, and teachers. Everyone feels enormous pressure to do something. Previous diagnoses (especially conduct or oppositional disorder) provided little hope and no call to action. In contrast, a diagnosis of CBD purports (falsely) to explain the misbehavior and justifies a medication intervention.

  The false prophets were influential and charismatic “thought leaders” who had the added prestige of coming from Harvard. They spread an apocryphal gospel evangelized widely to child psychiatrists, pediatricians, family physicians, parents, and teachers. Their energetic crusade was heavily financed by the drug company sponsors who would be the major beneficiaries. The prophets had gone up to the mountaintop and come down with a new dogma—henceforth the old DSM rules for diagnosing bipolar need not apply to children. CBD no longer required the presence of classic mood swings between mania and depression. Instead the diagnosis could be made in a free-form, inclusive way to include a variegated hodgepodge of kids who
were irritable, temperamental, angry, aggressive, and/or impulsive. The CBD boundaries were thus to be pushed far into unfamiliar territory to label children who previously received other diagnoses (e.g., attention deficit, conduct, oppositional, or anxiety disorder) or no diagnosis at all (“temperamental” but normal kids). A vast new market was opened for grateful Pharma. Mood swings are rare in kids—not a good sales target. But irritability is common enough to bring in blockbuster sales. And bipolar disorder is usually considered a lifelong diagnosis. Turn a child of tender age into a customer and he might be yours for life.

  It is not at all surprising that the pharmaceutical industry pushed the expanded definition of CBD and cashed in on its newfound popularity. More surprising was the enthusiastic acquiescence of doctors, therapists, parents, teachers, advocacy groups, the media, and the Internet.

  Once the rigors of DSM-IV definition were thrown out the window, mood-stabilizing and antipsychotic medications were given out wildly to treat fake CBD. The results have been devastating. Kids can have a rapid and substantial weight gain—an average twelve pounds in twelve weeks—increasing the risk of diabetes and possibly reducing life span.10,11,12 The most egregious malpractice has been loading up two- and three-year-olds with medication to treat a ridiculously premature diagnosis of bipolar disorder—in some cases killing them with lethal overdoses.13

  CBD also carries considerable stigma, implying that the child will have a lifelong illness requiring lifetime treatment. The diagnosis can distort a person’s life narrative, cutting off hopes of otherwise achievable ambitions, and also may reduce a sense of control over, and responsibility for, undesirable behavior. Other more specific causes of temper outbursts are much shorter lived and amenable to time-limited treatment. Substance abuse should always be the first thought for any irritable teenager. And attention deficit disorder often presents with an irritability that responds best to stimulants, but these may be withheld in the face of an incorrect bipolar diagnosis.

  The CBD fad is the most shameful episode in my forty-five years of observing psychiatry. The widespread use of dangerous medicine to treat a fake diagnosis constitutes a vast public health experiment with no informed consent.

  It is some small comfort that it did not arise from anything we wrote into DSM-IV—we rejected the suggestion for a criteria specific to CBD that would have legitimized the fad and given it more force. But I wish we had put a black box warning in the bipolar disorder section cautioning clinicians not to be fast and loose in giving young kids a diagnosis that most often did not apply to them and could have such dangerous consequences.

  Autism Becomes Fashionable

  The diagnosis of autism has exploded in the past twenty years. Before DSM-IV, this was an extremely rare condition, diagnosed in one child per two thousand. The rate has now jumped to one in eighty in the United States and an even more amazing one in thirty-eight in Korea.14,15,16 The first reaction was parental panic—worries about autism at the slightest sign that a child was not perfectly conventional. This was reinforced by a paper in The Lancet suggesting that autism might be caused by vaccination. In fact, their co-occurrence is no more than a coincidental chronological fluke—the typical age of onset of autism happens to occur at around the same time that vaccinations are scheduled. Conclusive studies have since disproved any causal connection, and The Lancet retracted the original paper when it was later exposed as a scientific fraud.17 But despite all the evidence to the contrary, misplaced parental fear somehow persists. Avoiding vaccination to protect against a false epidemic of autism has put many kids at risk for very real epidemics of measles and other once conquered and sometimes dangerous childhood diseases. All this reflects the general public misunderstanding of how psychiatric diagnosis works—i.e., that the prevalence rates are always extremely sensitive to any change in definition. The twentyfold increase in just twenty years occurred because diagnostic habits had changed radically, not because kids were suddenly becoming more autistic.18

  The autism “epidemic” has three causes. Some part surely comes from improved surveillance and identification by doctors, teachers, families, and the patients themselves. Spotlighting any problem reduces stigma and improves case finding. Some was triggered by the DSM-IV introduction of Asperger’s disorder, a new diagnosis that greatly broadened the concept of autism. But about half of the “epidemic” is probably service driven—children get the diagnosis incorrectly because it is the ticket to more attention in the school system and more intense mental health treatment.

  Few people have the incapacitating symptoms of classic autism, and these are extremely easy to identify. In contrast, Asperger’s describes people who are strange in some ways (with stereotyped interests, unusual behaviors, and interpersonal problems) but not nearly so gravely impaired as those who have classic autism (which also includes an inability to communicate and lowered IQ). Because many normal people are eccentric and socially awkward, there is no clear line of demarcation separating them from Asperger’s. We had estimated that Asperger’s would be about three times more common than the classic, severe form of autism. But rates have artificially swelled because many people within the range of normal variability (or with other mental disorders) have been misidentified as autistic—especially when the diagnosis is made in primary care, in school systems, and by parents and patients.

  DSM-IV may have started the autism epidemic, but other powerful engines drove it forward beyond all expectation. Probably most important was the positive feedback loop between spirited patient advocacy and the provision of school and therapeutic programs that require an autism diagnosis. As the population of “autistic” patients and their families grew, they gained the power to push for many additional services—sometimes by initiating successful lawsuits. The additional services then provided further incentive to increased diagnosis. With more people diagnosed, there was then an even larger constituency to push for more services.19,20

  The stigma of autism was also greatly reduced. The Internet provided a convenient and comfortable mode of communication, social support, and camaraderie. Autism received extensive and favorable press and television coverage and was presented sympathetically in movies and documentaries. Many successful people recognized themselves in the Asperger’s definition, and some wore it as a proud badge. Asperger’s even gained its own kind of offbeat glamour, especially among high-tech types. This publicity had the positive effect of reducing the sting of being diagnosed. But there was the usual overshoot. Asperger’s went from nowhere to being a diagnosis du jour and explain-all for all sorts of individual difference. About half the kids now diagnosed don’t really meet the criteria when these are applied carefully, and about half will have outgrown it on repeat evaluations.21,22,23,24

  The epidemic has had both pluses and minuses. For correctly identified patients, getting a diagnosis has brought the advantages of improved school and therapeutic services, diminished stigma, increased family understanding, reduced sense of isolation, and Internet support. For mislabeled patients, there are the personal costs of stigma and the reduced self and family expectations. And there is the societal cost of misallocation of extremely scarce and precious resources. It would be better if school decisions were not so closely coupled to a psychiatric diagnosis that was developed originally only for clinical, not at all for educational, purposes. Many of the mislabeled kids do have other serious problems that would independently require them to get special attention; they just don’t need the extra added stigma that comes with an incorrect diagnosis of autism. School services should be based on school need, not psychiatric diagnosis.

  As chair of the DSM-IV Task Force, I deserve blame for not having anticipated the rush to overdiagnose Asperger’s. It would have been useful in advance to predict the changes in diagnostic rates and to explain their causes. We should have proactively taken steps to educate the public and the media about what the labels mean and what they don’t mean—that the kids hadn’t changed, just the way they were bein
g diagnosed. It is a lot easier to trigger a fad than to end one.

  Bipolar II

  Perhaps the most important distinction in all of psychiatry is unfortunately often the most difficult. Does the patient have bipolar mood swings (with cyclical lows alternating with highs) or is this just a straight unipolar depression (recurrent lows with no highs)? This differential diagnosis has huge implications for future treatment. Antidepressants are good for lows but can worsen the overall course of bipolar disorder by causing irritability, mood swings, and rapid cycling. To reduce this risk, bipolar patients receive either a mood stabilizer or an antipsychotic (or too often, both) in addition to the antidepressant. But striving to prevent harm from antidepressants comes at a potentially heavy cost. The side effects of the mood-stabilizing drugs are dangerous weight gain, diabetes, and heart disease. The tough question is how to draw the diagnostic line between bipolar and unipolar to balance the risks of taking versus the risks of not taking the mood-stabilizing medication.

  The question is easy for patients having classic manic episodes who are clearly bipolar. Manic episodes are unmistakable and unforgettable. The person is supercharged in thought and deed; racing around; talking under pressure; spouting grandiose ideas, heightened creativity, a wild succession of totally impossible schemes; joking nonstop; floating on an elevated mood, but irritable if crossed; spending money like a drunken sailor; feeling boundless energy; acting inappropriately and impulsively; being intrusively sexual; and needing little sleep. Your Aunt Tillie could make the diagnosis of classic mania in a minute. And it provides a clear and essential call to action—no antidepressants without the safety net of a covering mood stabilizer.

  But what do we do if the person doesn’t have a full manic episode but does have periodic elevations in mood that are very different from his normal state? These less-than-full manic episodes are called “hypomanic” and they represent a conundrum. Patients who have alternating periods of depression and hypomania are at the crucial boundary separating bipolar and unipolar disorder. They could have been classified in either camp. If we classify them as bipolar, they will receive mood-stabilizing medication that may prevent rapid cycling, but they might be exposed to unnecessary mood-stabilizing medication that could be quite harmful. If we classify them as unipolar, they will receive only antidepressant medication, and this may trigger a manic episode. Faced with these ambiguous cards, we chose to add a new category, bipolar II, to describe patients who have depressions and hypomanic episodes. The weight of the evidence on their course, family history, and treatment response suggested they sorted better with bipolar disorder. And, on balance, we decided they could be more harmed receiving antidepressants without coverage than by the added burden of mood stabilizers. A close call, but it seemed safer to include bipolar II.