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Bipolar Disorder in Children (return to main Bipolar page)
The Child Advocate is devoted to children and the parents and professionals that work with them. This chapter from Dr. Kaplan's book is presented to you with permission from the author and publisher. This controversial and authoritative book presents the dilemma in addressing children and the diagnosis of Bipolar Disorder. No part may be reproduced without specific permission from them. The information presented at this site is for general use only and is not intended to provide personal advice or substitute for the advice of a qualified professional. If you have questions about the information presented here, please consult a physician skilled in psychiatric management, the resources listed or other professional in your area.
For your review the following chapter will present some of the many issues addressed in this book:
Chapter Four: Cultural Influences in Pediatric Bipolar Disorder
Your Child Does Not Have Bipolar Disorder
How Bad Science and Good Public Relations Created the Diagnosis
Stuart L. Kaplan, MD
Childhood in America
Sharna Olfman, Series EditorPraeger
Stuart L. Kaplan, M.D., is a board certified child psychiatrist and Clinical Professor of Psychiatry with 40 years of experience. He has authored over 100 scientific articles, book chapters, and presentations, and has treated thousands of children.
Your Child Does Not Have Bipolar Disorder
How Bad Science and Good Public Relations Created the Diagnosis
Stuart L. Kaplan, MD
Childhood in America
Sharna Olfman, Series Editor
An Imprint of ABC-CLIO, LLC
DO NOT COPY WITHOUT PERMISSION
Copyright 2011 by Stuart L. Kaplan, MD
All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, except for the inclusion of brief quotations in a review, without prior permission in writing from the publisher.
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Chapter Four: Cultural Influences in Pediatric Bipolar Disorder
During my psychiatry residency, I was fortunate to have a series of lectures on research methods by Martin Orne, M.D., a brilliant psychiatrist. Dr. Orne was interested in studying the nature of hypnosis. He was especially interested in the question of whether a hypnotic trance was an actual biological state or whether it was simply role-play or acting. In the late 1800s, when hypnosis was a popular entertainment, theaters regularly booked stage hypnotists to perform before large audiences. Inevitably, part of the performance included putting the entire audience in a trance. The hypnotist would ask the audience members to close their eyes and relax. More often than not, as the audience entered the trance state, they would slowly raise their right hands without being asked or told to do so. There is nothing about entering a trance state that has anything to do with raising your right hand, yet the audience -based on what they had heard, read, or seen about hypnosis-believed that you were supposed to raise your right hand. They did not have to be told to do this. It was part of the culture; they knew it, and complied with cultural expectations.
It is my contention that something similar has happened with pediatric bipolar disorder. Culture influences every aspect of this disorder-from its adoption as a valid diagnosis to the dramatic rise in the number of cases in the decade following its introduction. This chapter will discuss the role culture plays in the creation and expression of mental illness, and explore some of the events in the culture that contributed to the sudden rise of the pediatric bipolar disorder diagnosis.
How culture helps shape mental illness
Most American psychiatrists believe that mental illness exists as a physiological state that is largely beyond the realm of social or cultural influence. The DSM-IV defines mental illness as occurring inside the person (American Psychiatric Association, 2000). Mental illness as a physical disease is a critical presupposition in the DSM, and this leaves little room for the role of culture in the study of psychiatric illness. As journalist Ethan Watters notes in a New York Times article entitled “The Americanization of Mental Illness,” the DSM-IV relegates the influence of culture to an appendix of DSM-IV in which a variety of odd behavioral syndromes found in non-Western societies creates a “carnival sideshow” for the curious visitor (Watters, 2010a). Although some attention is paid to culture in non-Western countries, the DSM-IV simply does not address the pervasive and powerful influence of culture in the diagnosis and treatment of mental illness in the United States.
Despite being de-emphasized in the DSM-IV, culture has always had an influence on psychopathology. Diagnostic rates rise and fall depending on the culture’s view of a particular illness at a particular point in time. The fact that there seem to be trends in psychopathology is in no way meant to diminish the suffering of those who are mentally ill. It simply means that the way an individual’s suffering is expressed is open to influence by popular culture. For example, at the end of the nineteenth century and into the early part of the twentieth century “conversion reactions”-also known as “hysteria”-were among the more widely discussed psychiatric disorders. Patients suffering from conversion reactions would display neurological symptoms, such as loss of sight or paralysis, with no apparent underlying physical cause. Though “conversion disorder” still remains in the DSM-IV, it is generally considered to have disappeared by the end of the twentieth century and is rarely diagnosed today. Several decades ago, when multiple personality disorder became a subject of media attention and was portrayed in several books and films, there was a marked increase in the number of psychiatric patients who displayed those symptoms.
Similarly, in the early 1990s, when the sexual abuse of children was a focus of media attention, a proliferation of cases of “repressed memories” of sexual abuse in early infancy were recalled suddenly by adults under hypnosis, and the subject of repressed memory appeared frequently in the psychiatric and lay literature (Loftus & J.E., 1995). Cases of conversion reactions, multiple personality disorder, and repressed memory syndrome have decreased considerably in the recent past, which supports the idea that they were tied to the amount of media attention they received.
Much of American culture exerts its influence through media-television, movies, the internet, newspapers, magazines, and books-and many form knowledge and beliefs about mental illness from the information received from these sources. The direct marketing of psychiatric diagnoses in the guise of educating the public about the illnesses is a practice that pharmaceutical companies have been alleged to use to increase the rates of psychiatric illness recognized by the consumers. The pharmaceutical companies believe that customers will use the company’s medication to treat the advertised illnesses. This practice, called “disease mongering” exemplifies the media creation of an illness (Moynihan & Henry, 2006).
In The New York Times article mentioned above, Watters discusses the effect media can have on how mental illness is experienced and identified within a culture. Citing the work of the medical historian Edward Shorter, Watters explains that each culture identifies its own “symptom repertoire,” described as a unique array of symptoms that express mental illness in that particular culture. Individuals who are suffering express their pain using symptoms from the repertoire of their culture. This is not done consciously. When a new diagnosis is created by professionals and disseminated by the media, it enters the symptom repertoire and becomes available for selection by suffering members of the culture. In this way, according to Watters, simply proposing a new psychiatric diagnosis can lead to an increase in the number of patients who then get those symptoms.
Watters cites, as an example of this phenomenon, the dramatic rise in the number of cases of anorexia nervosa in Hong Kong following the introduction of the diagnosis by the media (Watters, 2010b). Anorexia nervosa is a well-known psychiatric disorder in the United States. Most frequently, the disorder begins in young female adolescents who have a distorted view of themselves as fat and use very restrictive diets and intense exercise to lose weight. In extreme cases, starved and emaciated, they continue to lose weight and may die. Prior to 1994, there were virtually no cases of this type of anorexia nervosa in Hong Kong. Instead, there were rare cases of a form of anorexia in which girls had a sense of fullness, pain, and pressure in their stomachs and throats, and decreased their eating, but they did not think they were fat, did not want to lose weight, and did not intentionally diet or exercise. Then, in November of 1994, a young Chinese woman died suddenly of anorexia. The media began reporting on the illness for the first time, often copying symptoms of “American style” anorexia nervosa directly from the DSM-IV. Following this media attention there was a sudden and dramatic increase in the number of American-style anorexia patients in Hong Kong. This cultural phenomenon led to the serious illness of many young women.
Many psychiatrists believe that a rise in the number of cases of a newly introduced disorder is due to an increased recognition of a disorder by psychiatrists and other health care professionals that existed previously but was not identified. In contrast, Watters believes that the announcement of the disorder can actually create the diagnosis, as it did in Hong Kong. When a society’s “symptom repertoire” increases to include a new illness, those symptoms become available as a choice for individuals who are suffering.
A similar dynamic may have contributed to the dramatic rise in the rates of diagnosed pediatric bipolar disorder in the United States. Many children are unruly and difficult to manage. If one considers the arguments outlined above, it is easy to see how the explosion in media coverage of the pediatric bipolar disorder diagnosis may have led to the actual creation of new cases of the disorder. Watters’ case for this in Hong Kong is persuasive. My own experience and that of other psychiatrists with a flood of child patients (and their parents) who complained of “mood swings” and were convinced they had bipolar disorder, along with the media attention the disorder received, supports this possibility.
Watters’ observations and theories underscore the risk that publicizing a disorder can lead to an increase in the number of new cases. This seems much closer to the truth of the matter than simply attributing the dramatic rise in cases to an increased recognition of the disorder. At the very least it suggests that some caution might be exercised before announcing the birth of a new disorder. Such a warning might be particularly timely on the eve of the release of the new DSM-V (Yan, 2010) when it can be expected that the “symptom repertoire” will increase as the public learns of many new psychiatric diagnoses.
Pediatric bipolar disorder as a media event
The media debut of pediatric bipolar disorder began with the publication of the book The Bipolar Child by Demitri Papolos, M.D. and Janice Papolos, a husband and wife team (Papolos & Papolos, 2006). Dr. Papolos, an adult psychiatrist, is an associate professor of psychiatry at the Albert Einstein College of Medicine and co-directs its program in behavioral genetics. He has received funding from both the National Institute of Mental Health and the National Alliance for Research on Schizophrenia and Depression. He is not a child psychiatrist. Janice Papolos is a medical writer who has co-authored several books including another best selling mental health self-help book, Overcoming Depression, which she also wrote with her husband. The Bipolar Child is among the most influential popular press books written in the field of child mental health, perhaps because it purports to offer help for a very difficult group of children. The media attention it received certainly boosted its popularity as well. As part of its initial promotion, the Papoloses were featured on the national network television program “20/20.” Within thirty minutes of the segment’s airing, “20/20” received more than 6000 e-mails. Soon after, the authors were featured on several other highly visible television shows, including “The Oprah Show,” the CBS “Early Show,” and the CBS “Evening News” with Dan Rather (as reported on the authors’ website, www.bipolarchild.com).
The book was extremely well received by the reading public, and has sold over 200,000 copies to date. The extensive media coverage also served as a public relations blitz for the diagnosis of pediatric bipolar disorder. The Papoloses have started two foundations, issue a newsletter with 20,000 subscribers, and operate a website (www.bipolarchild.com). All of these highly successful activities have also helped to create public support for the diagnosis.
At first glance The Bipolar Child seems to be a responsible effort to communicate the characteristics of bipolar disorder to a group of parents whose children suffer from a variety of symptoms. On closer examination, however, it becomes apparent that the effort is less helpful than it seems. The description of pediatric bipolar disorder put forth in the book bears little resemblance to the actual disorder as it is understood in the DSM-IV. The reader is told that a wide spectrum of symptoms found in children are due to bipolar disorder. The current edition of the book includes a parent questionnaire that lists 65 such symptoms, most of which are not associated with DSM-IV bipolar disorder. Among these are night terrors, separation anxiety, hoarding behavior, complaints of boredom, apathetic withdrawal, and being “very intuitive and/or creative.” Another purported symptom of childhood bipolar disorder that typifies the book’s indifference to established diagnostic criteria is difficulty waking up in the morning. Many children have trouble waking up in the morning, and this has no bearing on whether the children have bipolar disorder. At a conference several years ago I was surprised to hear a distinguished authority in child psychiatry confidently confirm the view that difficulty waking in the morning is symptomatic of bipolar disorder in childhood. If this everyday complaint is taken as a symptom of childhood bipolar disorder, it is easy to understand why the frequency of this diagnosis may have increased greatly over the past several years.
The book emphasizes the irritability, rages, and aggression of the bipolar child, and notes that many of the children regarded as having bipolar disorder have ADHD as well. It confronts the possibility that ADHD may be difficult to distinguish from bipolar disorder in childhood but nonetheless claims to be able to do so. To make the distinction, the book reproduces a list of twelve ways to distinguish between the two diagnoses. The list was written originally by Charles Popper, M.D., from Harvard University, a former editor of the Journal of Child and Adolescent Psychopharmacology. The statements in this list have little or no evidence to support them. They seem to be clinical speculations or guesses about what may be true, but any weight they add to the scientific basis for making the distinction between pediatric bipolar disorder and ADHD is totally unwarranted. For example, one statement (#4) reports that children who have ADHD only have temper tantrums when they are over-stimulated whereas children who have bipolar disorder have temper tantrums when they are told “no.” This is not true. Oppositional Defiant Disorder, which frequently accompanies ADHD, is in fact characterized by difficulties taking no for an answer. It is all too common for ADHD children to have problems with this, and it hardly merits adding the diagnosis of bipolar disorder.
Similarly, the list includes a statement (#10) that misbehavior on the part of ADHD children is accidental while misbehavior in those with bipolar disorder is intentional. Again, this is not true. Children with ADHD who misbehave intentionally, and there are plenty, are best diagnosed with ODD as well as ADHD. Once more, the addition of bipolar disorder is unwarranted.
Finally, the list indicates that lithium treatment leads to improvement in bipolar disorder but not in ADHD. There is no evidence to support the contention that lithium works for bipolar disorder in children. Although there is no evidence or science supporting any of Dr. Popper’s twelve recommendations for making the distinction between bipolar disorder and ADHD, the Papoloses heartily endorse the list and have nothing to add in making the distinction.
The book is resolutely optimistic, with no doubts or misgivings about its conclusions and recommendations. It makes a great effort to persuade the public that pediatric bipolar disorder is a relatively common but largely unrecognized disorder that should be identified and treated. The book also cautions the reader that the child should be treated with “mood stabilizers” early on, “before episodes become more frequent and the illness warps the psychological development of a child and destroys the life of a family” (p. xvi) (Papolos & Papolos, 2006).
The perception that the disorder is widespread is encouraged by the authors’ use of a web-based methodology to gather data. Parents who believe their child has bipolar disorder-whether or not the child has received the diagnosis or even been psychiatrically evaluated-write to the website with descriptions of their child’s behavior and get advice from other consumers and physician consultants. This is not a science-based method for learning about childhood bipolar disorder. Rather, it seems to be a good method for reinforcing the beliefs, perceptions, and fears of those who write to the website. It creates a cult-like atmosphere. This is reinforced when the authors advise parents who believe their child may have bipolar disorder to seek a child psychiatrist who is not strongly committed to DSM-IV.
Since the publication of The Bipolar Child, a large number of additional self-help books for parents who believe they have bipolar children have appeared, including, for example, in no particular order, Parenting a Bipolar Child: What to Do & Why (Faedda & Austin, 2006); The Ups and Downs of Raising a Bipolar Child: A Survival Guide for Parents (Lederman & Fink, 2003); and Understanding the Mind of Your Bipolar Child: The Complete Guide to the Development, Treatment, and Parenting of Children with Bipolar Disorder (Lombardo, 2006). All of the books strongly endorse the existence of the disorder and provide guidance for its management to distressed parents.
A disturbing variation on the self help book for parents are books written for parents to read to their young children diagnosed with bipolar disorder. Through the skillful use of language and illustrations, the books are moving to read and do a good job of portraying the world of the troubled child. The characters’ situations are more heartbreaking when it becomes apparent that the books are incorrectly concluding that the children portrayed have bipolar disorder when they do not. Healy has also described these books and their inaccuracy in diagnosing bipolar disorder (Healy, 2008).
Consider Brandon and the Bipolar Bear: A Story for Children with Bipolar Disorder (Anglada, Taylor, & Ferguson, 2004). The book tells the story of one day in the life of Brandon, a young boy who is put to bed but then asks for a glass of water. He feels somewhat frightened and becomes tearful when left alone to fall asleep. Upon awakening, he has a temper tantrum because he doesn’t want to get out of bed. During the tantrum he tears off the arm of his beloved teddy bear. He is crushed by his destruction of his teddy bear but is greatly relieved when his mother offers to fix its arm. He becomes excited and bounces up and down on his bed. He goes to see Dr. Samuel, who tells him he has bipolar disorder and that he inherited it like the color of his hair. Dr. Samuel gives him medicine. None of Brandon’s behaviors alone or together are symptoms of bipolar disorder. Dr. Samuel, the genial final authority on diagnosis and treatment in the book, seems to have let his young patient down.
Further, consider Robert in My Bipolar Roller Coaster Feelings Book (Hebert, Hannah, & Hebret, 2005). Robert seems remarkably free from bipolar disorder as well. ADHD and fear of the dark seem closer to his actual diagnoses. He shouts out answers in class and has to remember to raise his hand. He is very excited about school and can get overexcited and giddy when he is very happy. He has a tantrum when his mother does not get him something he wanted in a store. He is afraid of the dark and is easily frustrated. He has trouble getting organized and has brief periods of unhappiness or “depression.” He works hard to control himself in school and in karate class. His doctor believes he has bipolar disorder. Robert’s parents tell him at the end of the book that bipolar disorder is just a part of who he is and not all of who he is. Yet it doesn’t seem to me that any part of Robert has bipolar disorder, and this diagnosis is a burden from which he could easily be relieved.
These two children’s books represent everything that is so chilling about the diagnosis of pediatric bipolar disorder: the children don’t have the disease, they have difficulties in their current lives that are not addressed (at least ADHD for Robert), and their views of themselves and others’ views of them will be in part based on the misunderstanding of their current diagnosis. Later in life, their trust in the helping professions will be shaken when it is realized that they do not have the disorder for which they have been diagnosed and treated.
In a twist on this child-oriented genre, there are some first-person accounts in which children contribute directly to the literature on pediatric bipolar disorder. In Bipolar Bubbles: A Positive Journey Through the Eyes of a Child with Bipolar Disorder, the bipolar child co-authors the book with her mother (Theisen & Theisen, 2008). The story is told well and the illustrations are particularly engaging. I can’t bring myself to criticize a child author, but the actual diagnosis of this child is very much in question.
Finally, Intense Minds is a collection of anecdotes and reminiscences about the suffering brought about by various symptoms of pediatric bipolar disorder (Anglada, 2006). The symptoms and the suffering are clearly portrayed and the pain conveyed during the first person accounts is vivid. Unfortunately, there is no evidence to suggest that the children have pediatric bipolar disorder. The symptoms are described in isolation by different children and with no pattern suggesting bipolar disorder. One chapter talks about anger, another talks about hypersexuality. Symptoms such as these, in isolation, are not sufficient for a diagnosis of bipolar disorder.
Weekly news magazines played an important role in supporting and disseminating the diagnosis of bipolar disorder in children. Highly influential was the August 19, 2002 issue of Time magazine in which bipolar disorder in childhood was the cover story (Kluger & Song Sora, 2002). It provided clinical descriptions of a nine year old and an adolescent both diagnosed with bipolar disorder. The nine year old did not seem to have the diagnosis; the adolescent did. Although the article notes in passing that the diagnosis is controversial, the overall tenor was very supportive of the diagnosis in children.
The scientific value of such articles is in good part determined by the quality of the experts the journalists elect to interview. Understandably, one of the sources for the article was Dr. Papalos, a pediatric bipolar expert of the day. Dr. Papolos informed the many readers of Time that pediatric bipolar disorder was like a tumor that had to be treated immediately or it would become much worse with time. Also he noted without evidence that pediatric bipolar disorder is worse in the morning but often subsides in the afternoon. The article discusses the genetic basis of the disorder. The article does not consider the possibility that the disorder has increased because it is excessively diagnosed. The article concludes optimistically that many new drugs are currently in the process of being tested for the treatment of the disorder.
The May 26, 2008 edition of Newsweek ran a cover story on pediatric bipolar disorder. The article was almost entirely devoted to the case history of “Max,” who was 10 years old at the time of the article and two years old at the time the diagnosis was first made (Carmichael, 2008). Max’s main symptom seemed to be aggression that was severe, frequent and unprovoked. The aggression began in his earliest toddler years and persisted with marginal improvement. Over his short life he had been on 38 different psychotropic medications. He did not respond well to them and developed a wide array of symptoms for which the medicines were blamed. At times he abruptly became depressed and suicidal but recovered in a matter of hours. Although Max is clearly a seriously disturbed child, there is no evidence that he meets DSM-IV criteria for bipolar disorder. Believing that he had bipolar disorder does not seem to have improved his symptoms.
The Sunday New York Times Magazine ran an article on September 14, 2008 that provided several case histories combined with the authors’ observations of the children and families (Egan, 2008). This material provides a compelling impression of the appearance and behavior of children diagnosed as having pediatric bipolar disorder. As in the other magazine articles discussed, the children are extremely aggressive and often dangerously out of control. After years of medication, psychotherapy, and special education efforts, the children remained impaired by their aggression and inability to conform to social expectations. A number of leaders in the field of bipolar disorder were interviewed for the article, and their comments were reported at some length. Gabrielle Carlson, M.D., presented the only dissenting view. Her comments were briefly reported and largely lost in the piece.
All of the articles make the obligatory comment that the diagnosis is controversial, but do not develop the objections to the diagnosis substantially. The overall impression given to the reader is that the disorder exists, and that the finest minds in child psychiatry are studying it. Reading the three articles at one sitting makes clear that these children do poorly with the treatments they have been provided. Their aggression continues, their families are devastated, their social skills are rudimentary, and their academic performance is limited. For the child patients described in these magazine articles, the diagnosis of bipolar disorder and the treatment based on this diagnosis have not been helpful.
These media presentations gained unusual force with the apparent endorsement of the disorder at the highest levels of the mental health scientific establishment – the National Institute of Mental Health (NIMH). Science is a major influence in the culture of mental health, and the National Institute of Mental Health is the most powerful force in the science of mental health in the United States. For decades, the best research in child and adult psychiatry in America has been performed at NIMH or funded by NIMH at universities around the country.
According to the article “What’s Normal?” by the distinguished physician and New Yorker columnist Jerome Groopman, M.D., an odd interaction occurred when The Bipolar Child crossed paths with the austere world of science at the National Institute of Mental Health (Groopman, 2007). In the article, Steve Hyman, M.D., the former director of NIMH, described visits from parents of bipolar children, all of them clutching the book The Bipolar Child when discussing their children. These parents enthusiastically endorsed the book and the diagnosis of bipolar disorder in children. In the early 2000s the National Institute of Mental Health undertook a major research initiative for the study of pediatric bipolar disorder that would influence how the disorder was viewed by the child psychiatric community.
Professional support for the diagnosis
In April 2000, during the time of Dr. Hyman’s directorship, NIMH convened a conference of researchers in pediatric bipolar disorder, many of whom had been funded by NIMH. The results of the conference were published in the Journal of the American Academy of Child and Adolescent Psychiatry under the title “National Institute of Mental Health Research Roundtable on Pre-pubertal Bipolar Disorder” (Nottelman, 2001). The article provided information to the practicing child psychiatry community about NIMH’s thinking and plans for the study of the disorder. It also conveyed some of the thinking of leading child psychiatry researchers.
The article supported many research tactics for the study of pediatric bipolar disorder that are strongly criticized in this book. For example the “roundtable” seemed to endorse asking adult bipolar patients at what age their symptoms of bipolar disorder began in order to understand the age at which bipolar disorder might begin. The reported “data” are subject to all of the distortions of memory of long ago events reported by distressed patients. The Childhood Behavior Checklist (CBCL) was recommended as an important instrument in the study of pediatric bipolar disorder, although it was not designed with this purpose in mind and does not reflect DSM-IV criteria. Most important, the roundtable article incorrectly noted that pre-pubertal children met DSM-IV criteria for bipolar disorder and bipolar II disorder. It also recommended that children who did not meet all of the criteria, such as those described by Dr. Biederman, should be diagnosed as bipolar disorder NOS. It was suggested that the latter group may have (italics in the original article) bipolar disorder. The further study of bipolar disorder in preschool children was recommended. Overall, NIMH appeared to endorse a number of controversial propositions that had a major influence on clinical care and research for the next decade.
It is highly unusual for a NIMH roundtable discussion to be published in the Journal of the American Academy of Child and Adolescent Psychiatry—there are no other such articles of which I am aware. Although publication of the discussion seems to be an entirely reasonable and constructive activity from the perspective of NIMH and the Journal, it may have led to some unintended consequences. The Journal publishes primarily research articles, but it is read mostly by practicing child psychiatrists. It seems inevitable, at least in retrospect, that the research issues discussed in the roundtable article eventually would be applied to the clinical care of patients. It is easy to see how a clinician might interpret the article as an indication that pediatric bipolar disorder is accepted as a diagnosis by NIMH, suggesting that it was now reasonable to identify and treat such patients in practice. The article is carefully and tentatively written, but for the busy reader it might have seemed that NIMH had given its support to the disorder’s existence.
Following publication of the article, NIMH developed funded initiatives for research programs and invited university researchers to apply for grant money to study pediatric bipolar disorder.
NIMH’s research support for the study of the disorder continued despite the publication of a well reasoned critique of the disorder in a written heated debate between Rachel Gittleman-Klein, Ph.D., a distinguished researcher in the psychopathology of childhood, and Dr. Biederman (Biederman, Klein, Pine, & Klein, 1998). In the debate, Dr. Gittleman-Klein spelled out many of the reasons that pediatric bipolar disorder did not meet DSM-IV criteria for bipolar disorder. It seemed to me that Dr. Gittleman-Klein had won the debate, but NIMH was undeterred from providing research support for the disorder.
It is difficult to overestimate the sway that NIMH holds over psychiatry. Obtaining a NIMH research grant is a major “ticket punch” to a career at a university medical school. Those psychiatrists who work at university centers will invest hundreds of hours in efforts to obtain such a grant. To learn that there was a new area for funding undoubtedly led to intense activity among university psychiatrists, and created in a twinkling stakeholders in the idea of childhood bipolar disorder. In general, if you receive money to study a particular area, you begin to find the area of increasing interest and importance. There is a natural inclination to be an advocate for the area in which you are working and funded.
NIMH, and university child psychiatrists funded by NIMH, have great influence on the field of child psychiatry and have been powerful forces in the spread of the concept of the bipolar child. Grant recipients wrote and published scientific papers on the disorder and its treatment. Many also frequently gave talks at professional meetings. Each paper they published and each talk they gave served, to some degree, to secure the illusion of the reality of the diagnosis in the professionals’ minds. The specific content of each scientific paper was less important than the subtext or buried message of all of the papers, which was, “Not only does pediatric bipolar disorder exist, but as a measure of its importance, I am spending my valuable university time and NIMH money to do research on it.” This helped create the illusion of a scientific foundation for the disorder that implicitly served to persuade professionals of its existence.
NIMH-funded university psychiatrists also tend to be “Key Opinion Leaders” (“KOLs” in the jargon of pharmaceutical companies) who exert a significant influence over how other child psychiatrists diagnose and prescribe. Psychiatrists in the community at times feel uncertain about the best way to proceed with a difficult case. Amid these uncertainties, the well-intentioned child psychiatrist often looks to the guidance of the Key Opinion Leaders in the field. These clinicians sometimes base their treatment on what they have heard from a KOL in the belief that if they do what the KOL does they are providing the best diagnosis and treatment currently available.
The NIMH funding, and consequent activities at scientific meetings and in professional journals, began to create an incessant drumbeat selling the diagnosis. Frequently, practicing psychiatrists were scolded in professional articles for under-diagnosing pediatric bipolar disorder. Although there was little scientific evidence that pediatric bipolar disorder existed, its presence seemed assured by the marketplace. Mental health consumers had embraced the diagnosis, as had the vast majority of mental health practitioners, and the psychiatric research establishment studying the disorder never seemed to miss an opportunity to advocate for it. What could not be gained in the science of the study of the disorder was easily achieved in the arena of public relations.
The pharmaceutical industry, always seeking out new markets, viewed the development of this new diagnosis with great interest. Drug companies recognize the invaluable influence (and marketing potential) of Key Opinion Leaders, and court them assiduously. They offer lucrative opportunities to act as paid consultants, serve on advisory boards, and give talks to other doctors. It was through these pharmaceutical-company sponsored talks that many child psychiatrists received instruction in the diagnosis of pediatric bipolar disorder. The talks were sponsored by companies that made drugs approved for use only in adults with bipolar disorder in the hopes that child psychiatrists would make the association and then use those drugs for children. The strategy seemed to work quite well. Although pharmaceutical companies are not allowed to advertise that a drug works or is safe in an age group or disease not specifically approved by the FDA, doctors are allowed to use drugs “off label” for any age or condition so long as the drug is on the market.
Aside from all of the external influences on physician behavior, there seems to be something about the diagnosis of pediatric bipolar disorder that is inherently appealing to the treating physician. Perhaps it is the complexity of the disorder, or it may be the complexity of using a combination of medications that until now had played almost no role in child psychiatry. The simplicity of the diagnosis of ADHD, and its ease of treatment, may have led to a degree of tedium for the office-based practitioner of child psychiatry. Pediatric bipolar disorder, in contrast, suggested some nuanced constellation of symptoms requiring a highly specialized pharmacologic skill set with drugs that were new to the child psychiatric community.
Parents of patients may be partly responsible as well. Many parents I see believe ADHD to be a commonplace and even stigmatizing diagnosis. They prefer, instead, to conceptualize their children as having bipolar disorder, which for many parents has come to be associated with creativity and intelligence. The authors of The Bipolar Child encourage this view when they write that many bipolar children “. . . are extremely precocious and bright-doing everything early and with gusto. They seem like magical children, their creativity can be astounding, and the parents speak about them with real respect, and sometimes even awe” (p. 8) (Papolos & Papolos, 2006).
In reality, given the choice of receiving a diagnosis of ADHD or one of bipolar disorder, ADHD is preferable. It is well understood and is easily and safely treated. In contrast, pediatric bipolar disorder is controversial, poorly understood, usually has a limited response to treatment, and has a well-known poor outcome (Geller & Luby, 1997; Strober, et al., 1995).
Psychological consequences of misdiagnosis
When a child is misdiagnosed with pediatric bipolar disorder there are a number of negative consequences. The child may be given dangerous adult medications, often in combination, with long-term effects on children that are unknown. Also, the serious difficulties these children do have—such as ADHD and ODD—are often left untreated. The long-term psychological effects of misdiagnosis can also be considerable. It is useful to look to social science to understand some of the possible consequences of imposing the pediatric bipolar disorder diagnosis.
In the physical world, simply predicting the return of Haley’s comet, or predicting the amount of snowfall for the winter of 2012, will not change the course of Haley’s comet or the amount of snow that will fall. The situation is very different in predicting human behavior. Informing subjects, patients, or others about your prediction can change their behavior and the outcome of the prediction.
Psychiatry, and especially child psychiatry, is entangled in making predictions about human behavior. In the language of medicine the prediction is usually expressed as a prognosis, which is an estimate of the long-term outcome of the illness. The prognosis provides information about whether the illness will improve, get worse, be cured, or become chronic. In child psychiatry the process is even more complex, as predictions made about the outcome of an illness may serve as forecasts about the future functioning of the child as an adult.
In their seminal book Pygmalian in the Classroom, Robert Rosenthal Ph.D. and Lenore Jacobson Ed.D., considered at length situations in which a prediction has an influence on the phenomenon under study (Rosenthal & Jacobson, 1968, 1992). These authors explained that a prediction changes outcome. When applied to a person making a prediction about another person, such as a doctor making a prediction about a patient, a prediction is an expectation on the part of the person making it, and the expectation, which is then communicated to the patient, changes the patient. In that sense, just making the prediction may change behavior so that the prediction comes true. When a prediction (prophesy) changes the outcome of events so that the prediction comes true, it is called a “self-fulfilling prophesy.”
Rosenthal and Jacobson cited extremely interesting studies that show how a person’s expectation can change behavior – even of nonhumans. In one typical study, psychology students were each assigned a rat that would be observed in several learning tasks. The students were told (deceived, actually) that certain rats were brighter than others when, in reality, all of the rats had the same ability. The students were then asked to observe the speed at which their rats mastered certain basic tasks like maze running. At the end of the study, the rats that had been labeled brighter actually learned these tasks faster than rats not labeled brighter. It was speculated that the students may have treated the rats labeled brighter differently-handled them more frequently, for example-and that this may have led them to perform better.
Rosenthal and Jacobson note that elementary school teachers intuitively make predictions to themselves at the beginning of the school year about which of their students will do well and which will do poorly. These intuitive predictions may be based on racial bias or social class biases that are determined by the appearance and behavior of the students. The teachers often have access to other information as well, such as the student’s previous performance in earlier grades. All of these intuitive judgments come together to create expectations about each child’s performance during the school year, and the teachers may treat children differently based on these expectations. For example, they may spend less time with students they expect to do less well and more time with students they expect to improve. As a result, the children whom they view pessimistically may actually do less well simply because the teacher believed they would, and the teacher will have unwittingly created a self-fulfilling prophesy.
In an attempt to understand this phenomenon, Rosenthal and Jacobson studied the effect of teachers’ expectations on academic performance, IQ, and student behavior. The study took place at an elementary school located in a working class community. The school divided students according to their ability, and there were three tracks in each grade: high, middle and low. At the beginning of the school year an IQ test was administered to all of the children at the school. As part of the experiment, the teachers were deceived into believing that the IQ test served to identify those students who might be expected to have a “surge” in academic competence in the coming school year. This deception was part of the experiment. The names of twenty per cent of the students in the school were selected, completely by chance, as those who would have a surge and the names were given to their teachers. If the self-fulfilling prophesy were true, those students whom the teachers believed would surge would actually show improvements simply because of the teachers’ expectations.
The experiment worked. There was a marked increase in IQ, grades, and behavior for the children identified as likely to surge. This was significantly greater than the improvement shown by the children not so identified. The study provides evidence that a change in expectations can lead to actual major changes in behavior and can even lead to changes in things previously thought to be relatively unchangeable, such as IQ.
What is the result of creating an expectation that a child has bipolar disorder? Diagnosing a child with a psychiatric illness he or she does not have creates fertile soil for a self-fulfilling prophecy. The child patient may begin to see himself or herself in a different light, as may the parents, teachers, siblings, and peers of the child (as well as a wide variety of other people with whom the child interacts). Cultural depictions of bipolar disorder, or knowledge of adults who have the disorder, will undoubtedly influence or affect how the child is viewed and how the child is expected to behave.
The role of self fulfilling prophecy seems as if it has great potential for consideration in longitudinal studies of pediatric bipolar disorder. It is regrettable that it is never even mentioned as an idea in all of the published studies. For example, a large NIMH study from three university medical centers examined 263 children and adolescents with so-called “bipolar spectrum” disorders (Birmaher, et al., 2006). The concept of the study was to follow these children for several years to learn what happened to their symptoms and whether they would develop into adult bipolar disorder patients with the classical DSM-IV appearance of bipolar disorder. As part of a longer term longitudinal study, patients with an average age of 13 years were followed for two years and seen for evaluation every nine months. At the end of the two- year period the study found that 20% of the youth with bipolar II disorder—those with a less severe form of mania—met criteria for bipolar disorder, and 25% of those diagnosed with bipolar disorder NOS met criteria for either bipolar II disorder or bipolar disorder. In other words, the children’s disorders tended to became more typical of adult bipolar disorders over the 2 years.
It is easy to imagine that there was a strong expectation for the patients’ bipolar symptoms to become more similar to adult versions of the disorder by the conclusion of the study. The research project team would have discussed this possible outcome with the child and the family, and it may have been a topic of conversation within the family as well. Yet the obvious role of the self-fulfilling prophecy is not mentioned in the article reporting the study. Given the vagaries of psychiatric illness and diagnosis, and the influence of expectations on behavior, an omission of this obvious consideration is an important scientific issue.
From the perspective of patients, and the psychiatrists who see them, the most disturbing implication of the self-fulfilling prophecy is the possibility of creating the illness in someone who might not otherwise have had it. Families can spend a good portion of their lives supporting the prophecy based on their own (mis)understanding of bipolar disorder and the limited evidence on which the prophecy is based. The effect this may have on a young child might take a novelist or a filmmaker to portray fully.
The shrill marketing of pediatric bipolar disorder by the commercial media, along with support for the study of the disorder from NIMH and Key Opinion Leaders, threatened to overwhelm the dispassionate scientific consideration of the existence of the disorder and the possible risks involved in its diagnosis, treatment, and prevention. Publication of articles in the most prestigious psychiatric scientific journals lent incalculable authority to the professional belief that the disorder existed and had been subjected to the most careful scrutiny.
It is reasonable to imagine or hope that science and its methods would balance the marketing and commercial pressures applied in selling the disorder. Yet for more than 15 years this did not seem to be happening. Instead, the interests and power of the pediatric bipolar community seemed to become increasingly entrenched. Evidence counter to the existence of the disorder was largely ignored-in fact there did not seem to be any evidence that might dislodge the proponents of the disorder from their beliefs-and acceptance of the existence of the disorder became impervious to argument. Although there were exceptions, until very recently, most protests took the form of quiet muttering between attendees after scientific meetings.
There were a few critics in American child psychiatry who challenged the establishment on this issue. Among early public critics were Drs. Rachel Gittleman-Klein (Biederman, et al., 1998), Jon McClellan (McClellan, 2005), and David Shaffer, M.D., the Chief of the Division of Child Psychiatry at Columbia University College of Physicians and Surgeons. Dr. Shaffer was featured criticizing the pediatric bipolar disorder diagnosis in an episode entitled “The Medicated Child” on the widely seen PBS program Frontline (Gaviria, 2008). His viewpoint will be especially influential in the future, as Dr. Shaffer is a prominent member of the child and adolescent section of the DSM-V task force. Sharna Olfman, Ph. D., recently edited Bipolar Children, a book critical of the disorder (Olfman, 2007). Critics outside of the U.S. such as David Healy, M.D., from Wales, Anne Duffy, M.D. FRCPC from Canada, Peter Parry, M.D. and Stephen Allison, M.D., from Australia, and Richard Harrington, M.D. and Tessa Myatt, M.D., of the United Kingdom have made the case that the disorder was largely non-existent in childhood (Duffy, 2007; Harrington & Myatt, 2003; Healy & Noury, 2007; Parry & Allison, 2008).
Currently there does seem to be a cultural and scientific shift away from the diagnosis. The DSM-V committee will have a major effect on the fate of the diagnosis.
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