Welcome to my blog, which speaks to parents, professionals who work with children, and policy makers. Through stories from my behavioral pediatrics practice (with details changed to protect privacy) I will show how contemporary developmental science can be applied to support parents in their efforts to facilitate their children’s healthy emotional development. I will address factors that converge to obstruct such support. These include limited access to quality mental health care, influences of a powerful health insurance industry and intensive marketing efforts by the pharmaceutical industry.

Monday, August 24, 2015

Autism, Anxiety, or Neither: A Tale of Two Boys

The subject of autism is so highly fraught, a well-respected child development researcher told me,  that she might need to be the only one in her field to never address the issue. A recent study showing that the likelihood of a child receiving a diagnosis depends on the center conducting the evaluation highlights the complexity of the problem.  For his PhD thesis, Phech Colatat at MIT Sloan School of Business Management reviewed records from three clinics established specifically for autism spectrum diagnosis.   At two centers the rate was around 35% while at a third the rate was 65%. The MIT news release about the study states: 

Those rates persisted over time, even when Colatat filtered for race, environmental factors, and parents’ education. 

But then comes what may be the most interesting finding: 

"...when doctors moved from one clinic to another, their rates of diagnosis immediately changed to match that of the clinic as a whole."

Colatat, based on extensive interviews and observations within the clinics, develops a theory for this phenomenon: imprinting. The article continues:

He conducted dozens of interviews with the clinicians to get a sense of how they had learned to diagnose autism. What he heard was the same few names again and again. At one clinic, a consultant from a nearby university had served as an intellectual mentor to the staff. She had impressed upon them how subtle the signs of autism can be, and as a result, they tended to give out the diagnosis more readily. At another, the clinic’s first director instilled the belief that autism can look like a lot of other conditions, which caused staff to be more conservative. These charismatic individuals made an impression that lasted.

Most striking about this study is the subjective nature of the diagnostic process. Once the purpose of the evaluation is to answer the question, "Does he or does he not have autism?" the possibility of exploration of the complexity of a child's experience is already limited. 

Referring to a recent trend to reframe the symptoms of autism as anxiety disorder, one pediatrician colleague described a kind of "aha" moment, saying excitedly, "Now I see that many of those kids diagnosed with autism really have anxiety disorder!" But both diagnostic labels may be similarly limiting. 

For both Charlie and Max, family outings often dissolved into screaming meltdowns. Both developed rituals of lining up toys, and could recite whole segments of Disney movie dialogue as they insisted on seeing the same film over and over again. Getting wet in a lake, hearing fireworks at a fair, being in a crowd, even of close family members, precipitated scenes of disaster. Teachers at their preschool had raised the question of autism.

Charlie's mother, Elena, had struggled her whole life with anxiety. His father Peter came from a family where discipline was strict, often shaming. He became overwhelmed with rage both at his wife, whom he blamed for his sensitive son's behavior, and at Charlie. Elena felt she had to protect Charlie from his father. Peter clearly favored Charlie's older brother, who he described as "laid back" and "easygoing." This tense family dynamic persisted for years as Charlie's challenging behaviors steadily escalated. Finally at the age of 8 he was referred to a center for autism and received a diagnosis. He entered the special education system as his behavior problems worsened.

Max's family took another route. They got a lot of support for themselves, from family members and from his mother Angela's own therapist, to make sense of Max's "quirks." They worked hard to help him manage what he experienced as onslaught of sensory stimulation. Angela, too, struggled with anxiety and sensory sensitivities, as did multiple family members. But her husband Mark, unlike Peter, came from a warm and loving family. Max's parents found a balance of limit setting and accommodation to his unique qualities. He discovered a love for both drumming and dance and excelled in both. By the time he was in high school, while his quirky behavior persisted, he recognized his challenges and found ways to manage them. He had a number of close friends and excelled academically. 

The need to find something "wrong" with a child may preclude meaningful help. Both these boys, and their families, needed time and space to be heard and understood. Our current system of DSM diagnosis, without this protected space time and space to listen, may bypass this search for understanding.

At the end of the article on Colotat’s research, the author raises the question of how we “get at the truth.” The term"autism" covers such a wide range of experience as to include both adults who advocate for themselves and individuals who cannot communicate at all. There is no “truth” for the diagnosis of autism, or for that matter any other DSM based  "mental disorder," all of which are based on subjective assessment of behavior or "symptoms."

The truth lies in our humanity, in the complex interplay between biology and environment. It lies in the stories we tell and the meaning we make of our experience. The search for the truth lies in protecting space and time to listen to those stories, in all their richness and complexity.

Monday, August 3, 2015

Is Listening a Science or an Art?

According to pediatrician turned psychoanalyst D.W. Winnicott, the "true self" in its original form develops when the mother meets the infant's "spontaneous gesture." She sees the baby as himself, without projecting her own expectations, fears, or needs. But as Winnicott identified, the mother is not perfect. Inevitably she fails in this process. Sometimes the failures are small; disruptions can easily be repaired. The true self continues to take shape and grow.  But more significant disruptions may occur.  Postpartum depression, a highly dysregulated baby, her own unresolved conflicts and losses, among other things, may obstruct a mother's view to her child's true self. That child may become an adult in search of his true self.

Winnicott understood this search on a profound level. He saw it in its original form in his work as a pediatrician with mothers and their babies. Then he saw it again, when his adult patients in analysis "regressed to dependence." They used him to discover, or re-discover, their own true self. Winnicott was able to support this process with his full presence, using the predictable space and time of the therapy session to provide a "holding environment" analogous to that offered by the mother in infancy. 

Psychoanalysis is sometimes described as the "talking cure." One might more accurately call it the "listening cure." In infancy the mother reflects the baby's experience, holds him with her body, her words, the sound of her voice. She helps him to give words to his feelings. When our emotions get the better of us, we have lost this ability to give words to feelings. When a therapist listens to our words, mirroring our experience in a way that echoes that original experience of being seen and understood, we can discover, or re-discover, that true self, that either never fully formed or got lost along the way. 

At the recent International Psychoanalytic Association Congress in Boston, a speaker at a panel on Winnicott (whose collected works will be published by Oxford University Press in 2016) addressed Winnicott's use of language. At the time he was developing his unique contributions to our understanding of human experience, adherence to Freud's original discoveries was considered paramount. Freud had developed his own language to describe his discoveries, and in part in an effort to make the field "scientific" there was pressure to use that same language. But Winnicott resisted. 

Using his own words was integral to his theories. By using his own language to describe his highly personal experience, he stayed true to himself. Thus it is the very lack of adherence to Freud's language that gives power to his ideas. But as Professor Scarfone articulated at this presentation, the ideas themselves are perhaps most true to Freud's discoveries. 

 We take its existence so much for granted, that we may forget that Freud's greatest original discovery was the unconscious. The unconscious is that part of the mind made up of feelings, thoughts, and memories that are out of our awareness but exert influence on our conscious thoughts and behaviors. The "talking cure" or "listening cure" connects those thoughts and feelings, which may maintain a grip on us in unhealthy and maladaptive ways, to conscious thoughts and words. When a therapist listens to a patient, she to performs a kind of mirroring function.  She parallels that original experience of connecting thoughts and feelings with words, when the mother recognizes the infant's true self. She offers the patient space and time to say what he means, to connect words with feelings, and so make the unconscious conscious.  In other words, she gives the patient the space and time to discover his true self.  

In the current age of "evidence-based" medicine, I question the necessity of scientific evidence of the healing power of listening.  For Winnicott, the search for the true self precludes a common language; thus it is in a sense by definition unscientific. Attempts to design controlled studies inevitably call for a common language, and for a reduction of human experience to quantifiable measures. When I offer space and time to listen parents whose children are struggling with a range of "behavior problems, I always hear a story that gives meaning to the behavior.  The stories themselves are the evidence. 

When I read Winnicott, I have the calming, centering experience of recognition and understanding. I feel that if he were here today he would "get" what I find troubling about this age of "evidence-based" medicine. Listening to parents and children,  facilitating development of a child's true self, is by definition unscientific. It is creative and original. Creativity emerges in the "play space" of the therapy setting. Telling of the story is itself a creative act. As Winnicott writes in Playing and Reality:
It is in playing and only in playing that the individual child or adult is able to be creative and to use the whole personality, and it is only in being creative that the individual discovers the self. 
In conclusion, I playfully offer an articulation of the connection between language and the true self from another creative thinker, Dr. Seuss:

          I meant what I said and I said what I meant
         An elephant's faithful one-hundred percent                          
                                                Dr Seuss, Horton Hatches the Egg

Sunday, June 28, 2015

First in Gun Violence, Last in Paid Maternity Leave: Is There A Link?

In his remarks in the wake of the Charleston shootings, President Obama said, "At some point, we as a country will have to reckon with the fact that this type of mass violence does not happen in other advanced countries." 

When reading a recent article about Dylann Roof's early life history, I immediately thought of the Center for Disease Control (CDC) study on adverse childhood experiences (ACE.)   A massive long-term study, it provides extensive evidence that exposure to adverse childhood experiences, including not only frank abuse, but also such things as neglect, domestic violence, divorce, parental mental illness and substance abuse, dramatically increases the risk of a wide range of health problems both mental and physical. The study is located on the CDC website under a section entitled "Division of Violence Prevention."

 While I only know what I read in the paper, it seems that Roof had a very difficult childhood, with possible exposure to domestic violence. His step grandmother suggests that his parents may not have been available, either physically or emotionally, to care for him. She also indicates that he developed obsessive-compulsive behavior as a young child. In my experience with many young children with similar symptoms, this behavior often represents a solution to a problem, a way to manage overwhelming anxiety and emotional distress. 

Who was listening to this young child and family when things began to unravel? Who took the time to understand the source of his increasingly troubled behavior? Is it possible that he was drawn to the white supremacist group as a way of finding a family? Was it a place where he could be heard when no one was listening?

The United States is the only industrialized nation in the world without government supported paid maternity leave. This statistic reflects a lack of value of parents and young children. In stark contrast, in Finland, every new parent receives a “baby box” filled with clothes, diapers and other assorted baby needs. When the box is empty, it often serves as the baby’s first bed. While the items themselves are useful, the meaning of this box is of greater significance. It says “our society places value on new parents and babies.” Could there be link between the amount of violence in our country, in contrast to other developed countries, and the lack of support for young children and families?

Certainly the conversation about racism, and why such groups even exist, is critical. But going back to Roof's childhood may lead to the answer to the question President Obama raised. As the CDC wisely recognizes, supporting young children and families, and devoting resources early, before these adverse experiences can exert their harmful effects on the body, brain and mind, goes  under the heading of "prevention of violence." Paid parental leave, and with it a shift towards valuing young children and families, may be a necessary first step. 

Friday, June 12, 2015

Teen Bipolar Disorder and the Abnormal Brain: What Does the New Research Mean?

Two glaring omissions stand out in the recent widely publicized Yale study, titled in the Yale News  "Adolescent Brains Develop differently in Bipolar Disorder." Using MRI to compare a group of teens with the diagnosis of bipolar disorder according to DSM criteria with a group that did not have this disorder, they found volume decrease in the area of the brain cortex known to be involved in emotional regulation. 

The first omission is any mention of the possible effects of medication. While the newsletter does not even mention medication, the study itself does say that the teens carrying the bipolar were on medication but that "medication was not systematically studied." The long-term effects of psychiatric medication are unknown. A  study in the Archives of General Psychiatry suggested that one of group of drugs, the atypical antipsychotics, which are often used to treat bipolar disorder, may themselves be linked to decreased brain volume. 

But perhaps the more glaring omission is anything about the early history, or life story, of these teenagers. 

Elegant and compelling research by Harvard psychiatrist Martin Teicher and colleagues demonstrates that mental illness in the setting of what they term “maltreatment” is a very different entity, in terms of course of illness, response to stress, brain structure and gene expression, than the same DSM named “disorders” in the absence of these experiences.

Maltreatment is broadly defined as being “characterized by sustained or repeated exposure to events that usually involve a betrayal of trust.” 

It includes not only physical and sexual abuse, but also emotional abuse, including exposure to domestic violence, humiliation and shaming, as well as emotional and physical neglect. The incidence of childhood maltreatment ranges from about 14% in one-year prevalence to 42% in retrospective reviews covering the full 18 years of childhood.

The way maltreatment is defined has great significance in the way we think about the connection between childhood experiences and adult mental illness. The word “trauma” itself may convey a kind of “not me” response, but when the term is defined in this way, we see that these experiences are, in fact, ubiquitous.

This research shows that it is meaningless to talk about mental health disorders, as defined by the DSM system, without knowledge of this early life experience.

But perhaps more importantly, the language we use has great implication for treatment. The Yale study authors recognize that the brain is “plastic” so prevention is possible. But without recognizing the role of early life experience in development of the brain abnormalities, the treatment might very well end up being a drug.  Broadening our understanding of the cause of the brain abnormalities, as Teicher’s work demonstrates,  shows that true prevention lies in supporting young families, and intervening early in families where children are at risk for experiencing maltreatment.

Teicher recommends starting with the way we name these disorders:

We propose using the term ecophenotype to delineate these psychiatric conditions. We specifically recommend, as a first step, adding the specifier “with maltreatment history” or “with early life stress” to the disorders discussed here so that these populations can be studied separately or stratified within samples. This will lead to a richer understanding of differences in clinical presentation, genetic underpinnings, biological correlates, treatment response, and outcomes.

The Yale study, tellingly published in the journal “Biological Psychiatry” gives the impression that these “disorders” are biological in the way that, to use a frequent comparison, diabetes is. This view is a disservice to our humanity; to the way our lives have meaning because of our relationships with others and the stories we tell. The first and critical step in prevention of “bipolar disorder” is to recognize that these stories exist, and to make space and time to hear them.

Thursday, May 28, 2015

Is There a Role for Literature in "Evidence-Based" Medicine?

A recent article cast a long shadow over the highly touted concept of "evidenced-based" medicine, when a professor of ethics delineated multiple transgressions in research in the University of Minnesota's department of psychiatry. In another example, a colleague who questioned the way the data has been manipulated in favor of the popular "Triple P" parenting program, upon publishing a large study that did not support these findings, experienced professional repercussions. Complex relationships between the academic world and the pharmaceutical industry are well recognized. 

Certainly there exists a wealth of high-quality research that is not subject to this kind of corruption, and has an important role to play. But a hefty dose of caution is called for. Where else might we look for evidence to guide our practice of medicine? 

In my behavioral pediatrics practice, when we have time, we inevitably find that behind every "behavior problem" there is a story that makes sense of, or gives meaning to, the problem. In my forthcoming book (Da Capo, Spring 2016) about the need to protect space and time for listening in order to promote growth, healing and resilience, I offer these stories as a form of evidence. 

Literature, another form of storytelling, can offer a kind of evidence. In my book, I refer to one of most famous quotes from To Kill A Mockingbird, when Atticus tell his daughter Scout, "You never really understand a person until you consider things from his point of view, until you climb in his skin and walk around in it."  I now understand this as a description of an essential of human characteristic, namely the ability to reflect on the meaning of another person's behavior The enduring power of Harper Lee's book speaks to the significance of listening, of taking time to put ourselves in another person's skin.

In a section of my book titled “Listening for Loss,” I expanding upon the way loss, as in the case of infertility, pregnancy loss, loss of a child, and even loss in a previous generation, particularly when it has been unacknowledged and unmourned, can exert significant effects on subsequent relationships. I describe how the specter of unbearable loss is an inevitable, if usually unspoken, part of becoming a parent.

I recently discovered a beautiful, if exquisitely painful, expression of this idea in Hanya Yanagihara’s novel, A Little Life.

You have never known fear until you have a child, and maybe that is what tricks us into thinking it is more magnificent, because the fear itself is more magnificent. Every day, your first thought is not “I love him" but “How is he?” The world, overnight, rearranges itself into an obstacle course of terrors. I would hold him in my arms and wait to cross the street and would think how absurd it was that my child, that any child, could expect to survive this life. It seemed as improbable as the survival of one of those late-spring butterflies-you know, those little white ones-I sometimes saw wobbling through the air, always just millimeters away from smacking itself against a windshield.
I suspect this passage will resonate with many, if not most parents, to varying degrees, in large part according to their own life experience with loss. For me this is evidence that loss is part of parenting, and when things go wrong, when children have "problem behavior" we must protect space and time to listen for loss.

One young woman for many years had been treated for ADHD for her distracted and impulsive behavior. Only when she experienced a significant decline in his mental health did the story come to light that she had a brother who was stillborn about a year before her birth. Her mother had suffered prolonged severe depression in the face of this loss, which was never acknowledged or spoken about.

Perhaps we need a healthy combination of all three. High quality research, together with stories, both from our patients and from literature,  can help guide us to "best practice" of medicine.