Too many psychiatric diagnoses for children: an epidemic of labels

Allen Frances, professor of child psychiatry at Duke University and chair of the DSM IV(Diagnostic and Statistical Manual of Mental Disorders) task force hit the nail on the head in a recent commentary "Why So Many Epidemics of Childhood Mental Disorders?" in the Journal of Developmental and Behavioral Pediatrics. Because he makes his argument so clearly and persuasively (and the full article is only available to those who subscribe to the journal) I will quote it at length.

Since the publication of DSM-IV in 1994, the rates of 3 mental disorders have skyrocketed: attention deficit disorder (ADD) tripled, autism increased by 20-fold, and childhood bipolar disorder by 40-fold. It is no accident that diagnostic inflation has focused on the mental disorders of children and teenagers. These are inherently difficult to diagnose accurately because youngsters have a short track record; are in developmental flux that makes presentations transient and unstable; are sensitive to family, peer, and school stresses; and may be using drugs. If ever diagnosis should be conservative, it should be in kids. Instead, we have experienced an unprecedented diagnostic exuberance encouraged in part by DSM-IV, but mostly stimulated by the powerful external forces of drug company marketing and the close coupling of school services to a diagnosis of mental disorder.

He gives the example of ADHD, describing how the revisions to DSM IV had anticipated a jump in diagnoses in girls with the additon of an "inattentive" subtype. But in fact there was an unexpected tripling of ADHD rates and parallel increase in use of psychiatric medication. He writes:

Three years after DSM-IV was published, drug companies introduced new and expensive on-patent drugs that provided the incentive and resources for an aggressive marketing campaign to psychiatrists, pediatricians, and family doctors. Simultaneously, successful drug company lobbying gave them unrestricted freedom to advertise directly to consumers. Parents and teachers were inundated with the message that ADD was terribly underdiagnosed and easily treated with a pill. Sales of ADD drugs ballooned to an astounding $7 billion.

He then moves on to bipolar disorder:

Childhood bipolar disorder is an even more chilling case. DSM-IV had wisely rejected a proposal that there be a separate and much looser definition of bipolar disorder in children. The argument for inclusion rested on the unreplicated findings of just 1 (albeit very influential) research group suggesting that kids present a developmentally different prodromal form of bipolar disorder characterized by ambient irritability, impulsivity, and temper outbursts, rather than the typical cyclical mood swings of adults. Rejection by DSM-IV did not stop charismatic thought leaders (who were heavily financed by drug companies) from spreading the gospel of childhood bipolar disorder. The 40-fold increase in rates was accompanied by an increase in antipsychotic spending up to $18.2 billion in 2011. These drugs frequently cause massive weight gain in children. The overuse of antipsychotics in kids was not deterred by the fact that childhood obesity is an important risk factor for diabetes and heart disease. Drug companies have received billion dollar fines for off-label marketing to kids, but these pale in comparison to the enormous revenues. Of note, the inappropriate use of antipsychotics is most pronounced among children who are economically disadvantaged.

He then accurately depicts the link between the rise in diagnoses of autism with the fact that a diagnosis is needed for a child to receive appropriate services:

The introduction of Asperger's by DSM-IV was expected to result in a 3- to 4-fold increase rates of autism. Severe classic autism had an unmistakable presentation with rates lower than 1 per 2000. Asperger's blends imperceptibly into normal eccentricity, and the rates of autism are now reported at 1 per 88 in the United States and 1 in 38 in Korea. Theories connecting the increase in prevalence to vaccination have been discredited. Instead, the rates have grown so rapidly because a diagnosis of autism is required to allow a child access to greatly enhanced school services. About half the youngsters who now receive the diagnosis do not really meet the DSM-IV criteria when these are carefully applied. And follow-up studies finding that half the kids no longer meet criteria also confirm that diagnostic inflation is rampant. Eligibility for school services should be decoupled from an unreliable clinical diagnosis and instead be based on educational need. 

The challenge, and Frances does acknowledge this fact, is to avoid over-diagnosis while at the same time not undertreating those who need help. Most of the children who receive these labels, and their families, are struggling in significant ways. They do need help,  and sometimes lots of it. The issue is inextricably linked with the need to "name" the problem, a need comes in part from both clinicians and parents, who may feel more of a sense of control if what they are struggling with has a name, and also insurance companies who require a diagnosis for reimbursement of services.

Psychiatric diagnoses in children, by definition, place the problem squarely in the child, when in fact it is almost always more complex than this. Genetic vulnerability and environment both have an important role to play. A recent article in the Archives of Diseases of Childhood; Poverty, Maltreatment and Attention Deficit Hyperactivity Disorder offers insight in to this complexity:

This paper hypothesises that the population of children receiving a clinical diagnosis of ADHD is aetiologically heterogeneous: that within this population, there is a group for whom the development of ADHD is largely genetically driven, and another who have a 'phenocopy' of ADHD as a result of very adverse early childhood experiences, with the prevalence of this phenocopy being heavily skewed towards populations living with poverty and violence. A third group will have a high genetic risk and have been exposed to violence.

The key phrase here is "aetiologically heterogeneous." Psychiatric labels, be it "ADHD" "bipolar disorder" or "autism," are artificial constructs that provide a false sense of simplicity.  When I see a child and family in consultation, the aim of the work is to take the time to listen to the story and understand where, and it may be in several places, the "problem" actually lies. In order to help these children and families in a meaningful way, we need to be able to, in the words of one of my mentors Ed Tronick, "embrace complexity."

Pediatricians and prevention of toxic stress

The Harvard Center on the Developing Child has produced a new video: Building Adult Capabilities to Improve Child Outcomes: A Theory of Change. The video wisely identifies the need to support the adults in a child's life in order to promote long-term health, both physical and emotional. It points to the abundance of scientific evidence showing the need for providing safe and secure relationships in early childhood to reach these goals. Exposure to stress in the absence of such safe, secure relationships is termed "toxic stress."

As pediatricians have regular contact with young children and their families, the need to translate this research in to the clinical setting of pediatric practice is clear. The American Academy of Pediatrics (AAP) has embraced this task. The 2013 AAP national conference titled Early Brain and Child Development: Building Brains, Building Futures, will present the science of early childhood.

In addition, concurrent with the release of the above video are a number of publications addressing the need to integrate the research in to practice. One article, Listening to the Baby's Brain to Reduce Toxic Stress: Changing the Pediatric Check Up to Reduce Toxic Stress  describes new interventions.

Purposeful Parenting materials, for example, emphasize “face time” with infants, a type of “serve and return” interaction fundamental to the wiring of the brain: When an infant smiles, the caregiver should smile back—and should do so repeatedly throughout the day. When infants learn early on that smiling, then cooing, then words, are the best way to get attention, they keep using those strategies. But if face time fails to occur frequently enough, infants may learn less healthy ways—such as crying or whining—to get the attention or support they crave. The lack of something as simple as face time can lead to more infant stress and less healthy ways to cope with stress in the future.

This recommendation appears to draw on the powerful research of Ed Tronick showing the distress caused to an infant when a caregiver presents an unresponsive "still-face." His research has shown that when a caregiver is attuned with an infant in 30% of interactions, and if the remaining misattunements are recognized and repaired, the child develops a positive affective core-  an ability to experience joy and connection.

Given these findings, the AAP recommendation is a good one. But most caregivers intuitively provide this attunement without needing anyone to tell them what to do. They naturally experience what D. W. Winnicot termed "primary maternal preoccupation," acting as what he called the "ordinary devoted mother." When they do not, simply telling them to smile at their baby will likely be ineffective. This is where the link to the video comes in. To "build adult capacities" in this situation, there needs to be an opportunity to listen to that parent, who may be struggling with postpartum depression, may be socially isolated, or may herself have been abused.

Fortunately the AAP model also looks at the larger context. The director of Developmental and Behavioral Pediatrics at Yale University is quoted:

In order to make these changes, Weitzman says, pediatricians will need broad systemic changes to support them, including better medical training, payment systems, treatment options, and help to coordinate care.

What is needed is space and time to listen. That includes listening to the pediatricians who are themselves under tremendous pressures. This need is addressed my book Keeping Your Child in Mind, whose  second chapter  is titled "Strengthening the Secure Base: Listening to Parents." The book demonstrates this idea of supporting adults with the aim of supporting children, showing what this approach looks like from infancy to adolescence, as seen from the front lines of pediatric practice. It concludes:

 If those who care for children and families on the front lines have the time to develop these relationships, if there is a strong system of mental health care to support families who are struggling and a medical education system that encourages clinicians to listen to parents’ stories, we will be well on our way. The image comes to mind of a set of Russian dolls. When the health care system allows the primary care clinician time to listen to the whole of parents’ experience and to support their inherent wisdom and intuition, parents are enabled to be fully present with their child. In other words, the system holds the clinician, who holds the parents, who hold the children. 

NYT on mental illness, talk therapy, drugs: what about children?

Last week there was an invitation to dialogue in the New York Times on this subject.  In today's Times there is a fascinating array of responses, but none addresses the issue as it relates to children, for whom there has been an exponential rise in prescribing of psychiatric medication in the last decade. Here is the letter I sent in.

We live in a culture of advice and quick fixes. Increasingly, understanding of human experience is reduced to lists of symptoms, diagnosis and medication. There is less curiosity, less careful listening to one another.

Talk therapy, which perhaps should be called “listening therapy,” offers space and time to create a meaningful narrative, including an opportunity to experience feelings of grief and loss.

This is particularly important in work with children. When symptoms are medicated away, the opportunity to tell stories that give meaning to behavior may be lost. Research has shown that a child’s knowledge of family narrative, both the ups and downs, is highly correlated with self- esteem, resilience and mental health. Giving a parents an opportunity to tell their story to a nonjudgmental listener, to integrate their own narrative,  is critical to treatment of childhood “behavior problems.”

I am not advocating for talk therapy for children. Rather, in order to help children who are struggling with a range of "behavior problems," it is essential to listen to their parents, to give them an opportunity to reflect on the meaning of behavior. The behavior is a symptom, perhaps even an adaptive response, to the underlying problem. There is extensive evidence, that I describe in my book Keeping Your Child in Mind, that when parents reflect on the meaning of behavior in this way, they have the opportunity to promote healthy development at the level of gene expression and structure and biochemistry of the brain.

In my practice, where I see children under the age of five, parents typically present with concerns like, "he never listens" or "she is defiant." But as we take the time to think about how the problem developed, meaningful shifts in understanding occur. For example, parents may recognize the way a child's behavior pushes their buttons because of their own history of abuse. Or serious marital conflict, that often has zeroed in on the child's behavior, comes to the fore.  Or the impact of an easygoing sibling may be recognized. Tantrums and meltdowns at birthday parties may be understood in the context of a child's longstanding difficulty with processing sensory input.

Creating this narrative, this story that makes sense of the problem, may only be the beginning of the treatment. Intensive work with parent and child together, to address the way the child's behavior provokes the parent, is often indicated. Marital counselling, or even working with a couple who are not together, to help them work together to support their child may be necessary. Quality occupational therapy can be invaluable to help a child to feel calm in his body. Parents may benefit from things such as yoga to help them to calm their own reactions.

Here is where the trouble really starts. Quality clinicians who offer these services are in short supply. Insurance is often a huge obstacle. But, creating perhaps an even bigger obstacle, is the cultural norm of the "quick fix" approach of medicating symptoms, even in children as young as 5.  Not only must parents overcome these obstacles of finding a provider, making the time, allocating funds, as well as doing the important but often challenging emotional work of addressing these issues. They must go against pressure from teachers, relatives, friends and  health care providers.

I will continue to offer parents space and time to be heard, to create meaningful narrative, because I am confident that telling stories, and working through the feelings of grief and loss that often accompany them, is the path to meaningful connection and healthy emotional development.  It causes me great heartache when these efforts are thwarted by a system that works in opposition to this approach.

To CDC on children's mental health: consider office of homeland attachment security

Change is in the air for children's mental health care. The latest CDC (Center for Disease Control) special supplement to the MMWR (morbidity and mortality weekly report) is titled Mental Health Surveilance Among Children-United States 2005-2011. The report overview states:

Approximately $247 billion is spent each year on children’s mental health.  The mental health of children is critical to their overall health as children and as they grow into adults.

The report summary concludes:

More comprehensive surveillance is needed to develop a public health approach that will both help prevent mental disorders and promote mental health among children.

This report coincides with both the release of DSM (Diagnostic and Statistical Manual of Mental Disorders) 5, and a statement by the director of the NIMH (National Institute of Mental Health) that research funding would not be guided by DSM diagnoses, and that a new paradigm of mental health care is needed.

The time has come to recognize the overwhelming evidence regarding the importance of early relationships in healthy emotional development. The answer to the problem posed in the CDC report is in: invest in early childhood -from newborn to three- to prevent mental health disorders and promote mental health.

A huge part of this evidence comes from the CDC itself, with the ACES study, showing long-term negative impact on both physical and emotional health of a range of adverse childhood experiences.  An abundance of research coming from the discipline of infant mental health provides a more nuanced view of this issue. 

 When parents are supported and valued by society, they are able to be fully present with their children, in turn helping to grow healthy brains. Children who grow up in an attuned caregiving environment are flexible, resilient, and empathic.  In contrast, when children experience toxic stress, or stress in the absence of a safe, secure caregiving relationship, the parts of their brains responsible for emotional regulation do not develop normally. What results are symptoms that are then labeled "mental illness." 

I heard this phrase "office of homeland security of attachment" from Gerard Costa, director of the Center for Autism and Early Childhood Mental Health at Montclair State University. I was speaking at the 2nd annual Todd Ouida Children's Foundation Conference with the wonderful title: The Magic in Moments: Patterns of Early Relationships that Create Resilient Individuals and Peaceful Societies. While the phrase is meant to be humorous, the idea behind it is very serious.  

Our country is seriously lagging behind other countries in the care and attention we give to young children and their parents, with potentially devastating effects. A special government organization to take on this task would address this problem with the attention it deserves. This does not mean that the government has a role in parenting, which is a private, individual experience. Rather, such an organization could address such things as:

- parental leave policy

- comprehensive screening and treatment for perinatal emotional complications including 

depression and anxiety

- education of a workforce trained in working with young children and families

-  high quality child care, including supervision for child care workers 

Attending to early caregiving relationships will move us toward the goal of creating peaceful societies. Given that $247 billion is spent a year on children's mental health, focusing on early childhood is not only the right thing to do, it is also a worthwhile investment. 

  

DSM, NIMH on mental illness: both miss relational, historical context of being human

It seems that the National Institute of Mental Health (NIMH) may have dealt a death blow to the recently published Diagnostic and Statistical Manual of Mental Disorders (DSM 5) when the organization declared they would no longer fund research based on the DSM system of diagnosis. The views of NIMH director Thomas Insel were referenced in the recent New York Times article on the subject.

His goal was to reshape the direction of psychiatric research to focus on biology, genetics and neuroscience so that scientists can define disorders by their causes, rather than their symptoms.

I am no fan of the DSM system, which reduces complex experience to lists of symptoms; focusing on the "what" rather than the "why."  However, the NIMH model has limits as well. There seems to be a wish to study mental illness in the same way we study cancer or diabetes. While I certainly have great respect for the complexity of the pancreas, or the process of malignant transformation of cells, trying to understand the brain/mind in an analogous way seems to be an unnecessary and even undesirable reduction of  human experience.

What is missing from both paradigms is recognition of the relational and historical context of being human. Fortunately there seems to be awareness that neither paradigm is complete. The Times article goes on to say:

Dr. Insel is one of a growing number of scientists who think that the field needs an entirely new paradigm for understanding mental disorders, though neither he nor anyone else knows exactly what it will look like.

The growing discipline of Infant Mental Health offers just such a paradigm. This discipline is characterized by four key components. First and foremost, it is relational, recognizing that humans (and that includes their genes and brains) develop in the context of caregiving relationships. Second, it is multidisciplinary. Experts in infant mental health offer different perspectives.  They come from many fields, including, among many others, developmental psychology, pediatrics, nursing, and occupational therapy.  Third, it encompasses research, clinical work and public policy.  The field looks at mental health within the context of culture and society. And last, it is reflective, looking at the meaning of behavior, not simply the behavior itself. The ability to attribute motivations and intentions to behavior is uniquely human, and research has shown that this capacity is closely linked with mental health.

Unfortunately when people hear the term infant mental health, they imagine babies lying on the couch.  In reality, the field offers a way of understanding all of human experience, well beyond infancy.  I recently taught a course on infant mental health to clinicians at the Austen Riggs Center, a hospital that offers intensive inpatient treatment for severely disturbed patients. None of them are infants- the youngest are in their late teens and most are well into adulthood.  My students found the insights from infant mental health very valuable for understanding and treating their patients.

The Center for Disease Control (CDC) Adverse Childhood Experience (ACES) study provides extensive evidence of the long-term effects of early exposure to a range of negative experience, including parental mental illness, divorce, abuse, and neglect, on mental health. The more severe the mental illness, the earlier in life disruptions to development probably occurred. Knowledge of infant mental health (that spans age 0-5) offers a textured understanding of this early experience.

Looking at an individual brain and/or genes, or listing the behavioral symptoms of an individual person, out of relational and historical context, how can one possibly understand the complexity of human experience? This complexity is represented by such things growing up in the home of a Holocaust survivor, a depressed parent,  in the setting of ongoing war trauma, with a physically and emotionally abusive parent, or some combination of all of these. A recent article on the blog ACES Too High,  "What motivated the Boston bombing suspects?" offers a fascinating look at the Tsarnaev brothers from an ACES perspective. The use of the word"motivation" in the title represents a curiosity about the meaning of behavior that is representative of an infant mental health perspective.

The ongoing research coming from the discipline of infant mental health offers growing knowledge about effective, primarily preventive, interventions. Not only do we need this research to continue, but we also need to grow a workforce trained in infant mental health to offer these interventions on a large scale. When the NIMH looks for a new paradigm towards which to direct funding, I hope they will look to the paradigm of infant mental health.

Using media to promote change while celebrating Brazelton's 95th

I had the privilege this week to participate in the 95th birthday celebration of pediatrician T. Berry Brazelton on the occasion of  the  annual Touchpoints National Forum.    I even got to sit at the table with Dr. Brazelton for the birthday lunch!  We watched a wonderful animated video about his life, created by Exceptional Minds, an animation studio for young adults on the autism spectrum. We listened to songs written about and for Dr. Brazelton, sang "Happy Birthday" and shared birthday cake.

I had been invited by Kevin Nugent, director of the Brazelton Institute, to present at a workshop entitled "Can we Use Media to Support Parents?"Much to my delight, Dr. Brazelton attended our workshop. One of my co-presenters was Lisa McElaney, president of Vida Health Communications. I learned from her about a brilliant evidence-based program called All Babies Cry, a collection of DVD's produced with the aim of preventing child abuse in infancy.  Dr. Brazelton was fully engaged and enthusiastic, asking probing questions.

Recently Dr. Brazelton was presented with the  Presidential Citizen's Medal by President Obama.  The essence of Dr. Brazelton's gift is his tremendous respect for children, parents and the people he works with. His Neonatal Behavior Assessment Scale brought to light a newborn baby's  extraordinary capacity for communication. In his work with parents he brings a nonjudgmental strength-based approach to his interactions.  Respectful listening among colleagues is central.

At first I wasn't sure what direction to take with my presentation. Unlike my fellow presenters, I am not a media professional. But then I realized that it gave me a wonderful opportunity to think about why I write for the media.  Just five years ago, I was simply a small town doc in Western Massachusetts.

As I reviewed the events of these five years, I saw that an overarching goal of all of my writing is perfectly aligned with the work of Dr. Brazelton. My aim is to promote a stance of listening with nonjudgmental curiosity. That includes listening to children and to parents, as well listening as among professionals who may approach work with children and families from different paradigms.

As part of my presentation, I told stories about pieces I have written that aim to crossing paradigms and  promote new ways of thinking. It all started with my first op-ed piece for the Globe in 2008, provocatively titled Mind Altering Drugs and the Problem Child, in the wake of the explosion of diagnosis of bipolar disorder in young children.  Continuing as a blogger for Boston.com, I had a similar aim with posts such as Diagnosing ADHD under Age 6: A Mistaken Idea, Could Sensory Processing Disorder be the Primary Problem?, and even The Poop Wars: Why Miralax is Just a Bandaid.

It was a thrill of a lifetime to share this celebration with Dr. Brazelton and then to be able to present my work to him. He is a great model and a true inspiration.

Grieving for Boston

It was a heartbreakingly beautiful day.  I work at Newton-Wellesley Hospital, and as I live in Western Massachusetts, I had not yet had reason to come in to Boston.

Though I grew up in New York City, I have felt a strong attachment to Boston since I first lived here over 20 years ago, on what my husband fondly refers to as "far out" (Farrar) Street, that I never felt for New York.

I sat at the Starbucks on the corner of Charles and Beacon, working on my new book before heading to the State House for a  meeting of Representative Ellen Story's Postpartum Depression Commission. I had a bit of extra time, so I set out for a walk on the Common.

"Can I cry, walking alone in the middle all this life?" "Can I not?" My brain conversed in this way with my heart as I fought back tears. They did not come. I continued my walk, drawn to Boylston Street. I stopped to photograph some tulips. I saw a runner sitting on a bench tying her shoes. "Are you OK? "I wanted to ask.

I walked down Boylston to the memorial that has appeared, taking time to look at a huge card filled with signatures and words of gratitude addressed to Massachusetts General Hospital. It was getting late, so I headed back towards the State House.

Once again at the corner of Beacon and Charles, I stopped. I looked out across the Common at the magnificent burst of color against the perfect blue sky. I thought of a trip in April, 16 years earlier, with my then 2-year-old daughter.  My husband and I sat among the flowers in this same spot in the brilliant sunshine. A complex mix of feelings were brewing- anger at the loss of innocence, love for this beautiful city, and deep sadness, both for the people whose lives were directly impacted, and for the city as a whole. Then I let the tears come- enough to allow myself to know that this was not just an ordinary day of work.

I went to my meeting, fully engaged in the task at hand. Walking down the stone steps into the light of dusk, I was joined by a young man who had been at the meeting who I did not know. As I again looked out over the Common, I wanted to say, "This is my first time here since the bombing." Instead we simply smiled at each other. "Have a nice evening," he said as he walked the other way. "You too," I replied.