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

  But in my view, monolithic opposition to psychiatry is far too undiscriminating in its broadside critique. Indeed, it seems to me equally impossible to be enthusiastically an uncritical psychiatric loyalist or a dedicated psychiatric debunker. Both positions miss the truth in their one-sided extremity. During my career in psychiatry, I have encountered many hundreds of patients who have undoubtedly been harmed by it. The beginnings of this experience thirty years ago had already inspired me to write a paper with the Hippocratic title: “No Treatment As the Treatment of Choice.” Any responsible person must criticize psychiatry (and second others’ criticism of it) whenever it is done badly and outside its proper sphere of competence.

  But note this important disclaimer—the terrible diagnostic mistakes documented below do not in any way reflect the overall practice of psychiatry. You are about to read examples chosen because they illustrate the extreme of diagnostic incompetence and crazy treatment selection. The antipsychiatry movement, generalizing from worst cases like these, goes way overboard and condemns all of psychiatry. Their extremism would deprive those who really need treatment and can benefit greatly from it. The second half of this chapter illustrates the much happier outcomes achieved by most psychiatric patients.

  For every patient harmed by psychiatry, I have known ten whose lives have been dramatically helped, in some cases probably saved. I recently experienced the odd coincidence of receiving two separate e-mails on the same morning each asking almost the very same question: How can I remain so high on psychiatry while at the same time being so critical of some of its recent trends and so fearful of the harmful impact of DSM-5? My answer came easily. Our field is blessed with powerfully effective treatments (the wide variety of psychotherapies and medications) allowing us to achieve excellent results—better than those in most of the rest of medicine. A majority of our patients receive substantial benefit; a substantial minority recovers completely; some are stalemated; only a few are made worse. As psychiatrists, we heal whenever we can, and we provide empathy and consolation whenever we can’t. We are good at listening, caring, and using our experiences and personalities in the privileged journey helping others to heal, adapt, and help themselves.

  Psychiatry done well is a joy forever—a useful and highly satisfying craft. Psychiatry done poorly is a dangerous form of quackery. Our field goes wrong whenever it overpromises, overtreats, and underdelivers. Not all of life’s myriad problems are psychiatric illnesses. Not all psychiatric disorders are “chemical imbalance” or amenable to simply taking a pill. There is no shame in admitting that we still don’t understand the causes of mental illness—the rest of medicine deals with much simpler organs, but the causes of most of the physical illnesses also remain obscure. Although we have general outlines that are valuable in guiding treatment, each person is unique and each treatment regimen must be something of a trial-and-error experiment to custom-fit the needs of that person. If patient and psychiatrist work and think hard and put their hearts into it, something good usually happens.

  Mindy’s Story: The Fad Overdiagnosis of Schizophrenia in the 1960s

  We have two stories here. Story 1: A confused and rebellious teenager uses drugs, gets mislabeled as “schizophrenic,” and is hospitalized for two awful years. Story 2: A young doctor participates in this overdiagnosis and damaging treatment and doesn’t come to his senses until after she is discharged. Mindy Lewis is the girl. Once she got free of the repressive treatment system, she pulled herself together and matured into a wonderful woman and brilliant writer. Shame to say, I was the young doctor who helped make her life more difficult.

  Mindy at fifteen had a striking physical appearance: her long, curly blond hair was everywhere, her smile mischievous, her eyes defiant, her demeanor provocative. Inside, though, “I was extremely anxious, self-conscious, self-critical. I thought of myself as bad, a failure, a nonperson and invented a persona who could be perceived as daring because inwardly I felt I didn’t exist.” Mindy was chronically truant from school, hanging out in Central Park with other kids who were abusing drugs. Her mother was unable to fathom how Mindy had morphed from her neat, well-behaved, ponytailed little girl into a scraggly, unkempt, pot-smoking insomniac, an alternately silent and foul-mouthed stranger who wandered barefoot around Greenwich Village. War escalated between them. “My mother was overpowering. She made it clear that there could be only one adult female in her realm.”

  Then things got really dangerous. “Coming home to an empty apartment after school, I’d sample the liquor cabinet, or inhale a cleaning-fluid-soaked rag. I passed out in stairwells where tough boys fed me barbiturates and forced their hands down my pants to ‘revive’ me, and for days afterward I was depressed and ashamed.” Smoking pot added to her confusion: “My thoughts became animated in sensory synergy: I could see, hear, taste, and feel them. They weren’t always pleasant. Often they accused: I was ugly, stupid, fearful, wishy-washy, a baby, a fraud, a nonperson.”

  Mindy started seeing a psychiatrist, but their discussions were going nowhere. “Finally, as if on a dare, I swallowed a handful of aspirin.” Mindy’s mother signed her over to state custody for admission to the celebrated long-term inpatient unit of the New York State Psychiatric Institute. This led to a prolonged treatment nightmare based on a profoundly wrongheaded diagnosis. The director of the hospital happened to be the famed cocreator of the term “pseudoneurotic schizophrenia.” The idea was nutty on the face of it: you “uncover” someone’s “inner schizophrenia,” which could be identified even if there were no characteristic symptoms, simply because the patient was eccentric and the doctor was an “expert diagnostician” specially trained in the director’s dower-stick method. The whole thing was phony but widely accepted throughout the country in the 1960s. I was a young and stupid doctor and bought into it.

  Mindy was put through the horror show that passed for treatment in those days, and I was part of the team directing it. “Three times a day, we lined up for meds and I was given Thorazine, the standard drug for psychosis. If I tried hiding the pills in my cheek, the nurse would search my mouth and I’d be given a bitter-tasting liquid. Either way, the effect was the same: the drugs would nail you to the furniture, suck your life force, dry your mouth and fill your head with despair. Each time I swallowed the pills I wished the doctors could feel for themselves the deadening effects.” The therapeutic environment was anything but therapeutic: “If you weren’t depressed to begin with, this would do it: sitting around the ward smoking cigarettes, wearing hospital pajamas, unable to go outside, dulled by medication, getting fat on starchy hospital food and as a drug side effect. To break the monotony, we paced, played Ping-Pong, smuggled drugs, and unsnapped our pajamas for easy-access sexual exploration.”

  While we doctors thought we were “analyzing the transference” and providing the patients with brilliant insight and a “corrective emotional experience,” Mindy saw it differently. “For the adolescent girls, going to a session was an occasion, like going on a date. I would leave open the top snap of my pajama top and dab on patchouli oil. I tried to impress him by being as freaky and interesting as possible. Illness was coin of the realm to get attention. Everything I did or said was labeled as a symptom; every passing mood was cause for alarm. I was actor and director of my own little drama. I tried to find the part of myself that knew I was OK, but my healthy self was a distant memory. Maybe the doctors were right and there was something irreparably wrong with me.”

  Mindy was saved by Mrs. Gould, the wonderful English teacher who ran the school and was one of the few sensible people working on the inpatient unit. “She saw me as a person, not as a patient. In her classroom we’d pull meaning from our shared experience of literature. But above all was her commitment to us, her ‘brilliant children,’ and her belief in our health, intelligence, and spirit. Although she never directly undermined the doctors, she was on our side when the rest of the staff didn’t understand.”

  Mindy did luck out in her second doctor, �
�who was shy himself and talked about my painful self-consciousness with empathy and insight. Together we started working toward increased privileges. When I’d inevitably backslide and get into trouble, Dr. R. would fight for me to be given another chance. His trust in me worked, and gradually I was able to gain my privileges and get out of the hospital.”

  Overcoming setbacks, Mindy gradually forged a happy and successful life and a career as a graphic designer. Later she realized her ambition to be a writer and has published two books: Life Inside: A Memoir (published by Washington Square Press, 2003) and Dirt: The Quirks, Habits, and Passions of Keeping House (www.mindylewis.com). She now teaches writing workshops in New York City. Mindy doesn’t have a schizophrenic bone in her body and never did. She has taught me two great lessons. First, she had the generosity of spirit to forgive my foolish collaboration in her psychiatric imprisonment. And second, she taught me always to look for what’s fundamentally normal in people, not just what appears to be sick. We both, in our different ways, eventually succeeded in flying over the cuckoo’s nest.

  Todd’s Story: The Fad Overdiagnosis of Autism Occurring Now

  At fifteen months, Todd was happy and sociable, normal in every other way, but not yet speaking. His pediatrician overreacted and referred him for further evaluation. Big mistake. The testing found “profound” delays in both receptive and expressive language and introduced the possibility of autism or mental retardation. “How quickly we went from feeling that our son was a happy, normal child to being terrified of what was wrong.”

  By age two, Todd was speaking, but not yet using two-word sentences. Autism was the fad diagnosis of the day, and his pediatrician once again overreacted —now suggesting referral for a much more elaborate “Multidisciplinary Evaluation” at a very special center that was a three-hour drive away. Of note, Todd had moved up to speaking two-word sentences but, just to be on the safe side, his ever-conscientious parents chose to follow doctor’s advice and keep the appointment. Another big mistake. Todd didn’t sleep on the drive and his crankiness on arrival worsened when staff took away his favorite toy so “it wouldn’t be a “distraction” and led him away crying for four hours of testing. He had never attended preschool and wasn’t used to being apart from his parents. Todd returned tired, unhappy, and disengaged.

  The testing results were devastating. Todd had profound delays in every area: speech, language, fine motor, cognitive, adaptive, and even gross motor (although he had crawled, walked, and climbed very early). His scores were below what he had done at fifteen months. The diagnosis—classic autism. The prognosis—grim. Todd might deteriorate further, lose the speech he had, never leave home, and never attend a regular school. It was suggested that his parents consider leaving their jobs to move Todd near to a specialized, intensive, forty-hour-a-week program costing around $75,000 a year. They received detailed instructions on how to apply for state coverage.

  “I knew the scores and diagnosis couldn’t possibly be right—they described a different child. The evaluators argued that they had many years of experience, were the experts, and that we were in denial. I pointed out that Todd showed much better skills at home, but was told that mastery means showing the skills in every environment. I didn’t want denial to prevent my son from getting help, so I didn’t dismiss the results—but I couldn’t make sense of them because they didn’t describe Todd.”

  Todd’s parents are professors, so they started researching and discovered that young children should be tested in a comfortable situation, not when they are irritable, sleep deprived, and ripped away from parents. Within a few months, Todd was retested at a different center and scored normal for everything except receptive speech, which was borderline. Why the big difference? The new evaluations were much less stressful because his mother was present to reassure him. By age three, Todd tested normal in every area. At five, he has successfully attended regular preschool and passed his school district’s evaluation with a comment that there is no reason he would have any difficulty in school.

  How could the first set of experts get it so wrong? “I always thought it best to try therapy if there was a possible problem, but it can be very difficult to separate the evaluation process from the requirements for getting services. The evaluators who tested my son under such harsh conditions truly thought they were helping us and doing what was best for him; they wanted to make certain that he had as many services as possible in order to have the best chance of doing well. I wish that services depended on what each child needs, rather than on a misleading label and a standard set of recommendations. To do what was best for my son, we had to choose some services and turn down others.”

  Todd’s parents had been misled and terrified by “experts” who were expert at pursuing autism at the slightest hint of his having any social or language difficulty. They got much better advice from another more trustworthy expert who understands the role of individual difference in development. “It is like dental work: it used to be fine to have somewhat imperfect teeth so long as they were healthy, but now they all have to be straight and perfectly white.”

  Having a diagnosis of autism, even briefly, has had negative effects persisting beyond the initial worries: “There are still people who make assumptions about my son and show lower expectations for him, surprised he can talk at all or is doing well in school. Some don’t accept the second opinion and continually give advice as though he were dealing with challenges that he doesn’t have (e.g., recommendations to start different therapies, special diets, special camps, to apply for grant programs for which he doesn’t qualify, to obtain communicative devices that are unnecessary, to get therapy for nonexistent sensory problems, etc.). Even people who have heard the full story sometimes talk down to Todd, rather than understanding how well he can communicate with them. Other people reassure us that he will just be like scientists or engineers they have known. Comments like this make me wonder why it’s necessary to give a diagnosis to people who are functioning well and are successful.”

  Susan’s Story: The Fad Overdiagnosis of Adult Bipolar Disorder

  Susan is thirty-one years old, happily married, the mother of two young boys, a middle school teacher who loves to hike, canoe, and ski. She was perfectly normal until her first child was born and is perfectly normal again now. “I always knew I would be a mother—I wanted children of my own and also to adopt. But I never expected motherhood to be as difficult for me as it was.” Her first son, Eric, cried constantly and inconsolably for his first six months. Susan spent night and day trying to comfort him, but nothing worked. “I felt insecure as a mother. Here I thought I wanted all these kids, and I wasn’t able to soothe the only one I had. I wasn’t the capable, confident mother I thought I would be.”

  Finally, her pediatrician urged letting him “cry it out.” After a harrowing week, this worked, and Eric began sleeping most of the night. But Susan stayed miserable and sleep-deprived: “I don’t know if I had been holding myself together for my son, or if his wakings had damaged my sleep patterns, but I still couldn’t get a decent night’s rest. I felt completely burnt out.” She did all the right sleep hygiene things—no caffeine, careful diet, exercise by day, relaxing sleep routine at night—but was still out of sync. Worried this was postpartum depression, Susan consulted a general practitioner who prescribed Prozac, Xanax, Ambien, and Lunesta—all within five weeks. The drug cocktail made things worse. “I remember crying and saying good-bye to Eric—not because I wanted to commit suicide, but because I thought I was dying.”

  Susan then asked to see a psychiatrist. “Near the session’s end, Dr. A very nonchalantly said, ‘I think you’re a little bipolar.’ I was shocked and started to cry. Dr. A explained her reasoning: I was worse on antidepressants, couldn’t sleep, and had a slight family history of bipolar. She prescribed two atypical antipsychotics: Abilify and Seroquel.”

  Susan’s family and friends couldn’t believe the doctor’s diagnosis. It went completely against their experience—ther
e had never been anything the slightest bit bipolar about her. Susan read books and Web sites about bipolar disorder, and she too couldn’t see herself in the descriptions. “The diagnosis didn’t sit well with me, but I trusted my doctor.”

  She shouldn’t have. The doctor surely meant well but was dead wrong—shooting from the hip she had missed the diagnostic target. Just as “schizophrenia” had been the fad diagnosis in the 1960s, bipolar disorder has recently exploded as the diagnosis du jour—pushed aggressively by misleading drug company marketing. Dr. A had fallen for it and was seeing a “little bit of bipolar” where in fact there was none. That’s how fads work. Surely, Dr. A would have been more careful had she anticipated the enduring harm caused by her misdiagnosis.

  The first casualty was Susan’s self-esteem: “I had to wrestle with this new piece of my identity. I no longer felt normal. What crazy things have I been doing? People must have noticed, since it took Dr. A just a few minutes to pick up. I dreaded the day my son would find out. He deserved a better mom, a normal mom—one day he would realize that he wasn’t normal either.” And how could she get pregnant again—stopping her medicine might lead to recurrence of “bipolar disorder” and staying on it might hurt the baby.

  Fortunately, Dr. A retired. The new psychiatrist was extremely skeptical about her diagnosis, remarking that Dr. A thought everyone was “a little bipolar.” Susan was relieved of a psychic burden and was weaned off all the unnecessary medication. Soon she became pregnant again and delivered a baby son who was easy to care for. There was no return of postpartum depression.

  Should be a happy ending, but it isn’t. The bipolar diagnosis refuses to die, remains in her records, and still haunts Susan’s life. First, it was the life insurance policy Susan wanted, to protect her children should something happen to her. She was rejected by four companies and discovered that bipolars are considered risky. Then she learned that she could not adopt a child. Susan and new spouse were ideal candidates—loving marriage, well educated, stable jobs, homeowners, highly motivated, stable, compassionate, and on and on. “Despite all things going for us, we found out we never had a chance because of my diagnosis.”