Rising incidence of "ADHD" calls for radical rethinking

When the American Academy of Pediatrics changed the guidelines for ADHD to expand age of diagnosis to include children from age 4-18 (from 6-12), that the number of cases would rise was, by definition, inevitable. The recent survey by the CDC, published in the current issue of the Journal of the American Academy of Child and Adolescent Psychiatry, indicating that one in 10 children in the US carry a diagnosis of ADHD, confirms just that.

I felt re-energized and hopeful in ongoing efforts to, in my colleague's words "move the mountain of ADHD,"  when I received a request to speak at an international child psychiatry conference as part of a panel with a working title: "The ADHD Diagnosis: a Deconstruction from Developmental, Psychoanalytic, Infant Mental Health and Neuropsychiatric Perspectives."

 "Deconstruction" is a brilliant word, and captures well what I do in my clinical practice. Consider 4-year-old Max, whose parents brought him to my behavioral pediatrics practice to "see if he has ADHD." His preschool teacher had recommended the visit, suggesting that he might benefit from medication.  I asked his parents, Ann and Peter, if we might, acknowledging that Max did have symptoms of inattention, hyperactivity and impulsivity, take the time (we had an hour) to ask why he had these symptoms: to make sense of his behavior. While they had been hopeful that they would leave the visit with a prescription, reflecting Max's teacher's concern that he might "fall behind" without treatment, they were overjoyed to consider another approach.

Max had been adopted at age 3 months. Prior to this he had lived with his biological parents who were actively using drugs. They reportedly had a history of ADHD as did some biological siblings. Ann and Peter had been struggling in their marriage in the face of caring for this challenging child, and had recently separated. While Max had been a good sleeper, for the past several months he had been getting up multiple times a night and the whole family was chronically sleep deprived. Max had multiple sensory sensitivities. He cried with the sound of the vacuum cleaner; getting dressed was an ordeal because he could not find a pair of socks that was comfortable. He had difficulties with "personal space."

We had, in a sense, "deconstructed" the "symptom" to examine its various parts. We identified a genetic vulnerability for problems of attention, early neglect, ongoing family stress, sleep deprivation, and sensory processing challenges.

At age 4, there are multiple avenues of intervention. I usually start with sleep, as chronic sleep deprivation is inextricably linked with emotional and attentional dysregulation. Child-parent psychotherapy, where a clinician works with parents and child together,  has been shown to be effective in helping children develop capacities for emotional regulation, even in the face of early developmental trauma. A good occupational therapist, who addresses sensory processing challenges in the context of relationships, can help Max to use his body to manage his symptoms. Ann and Peter could examine the effects of their marital conflict on Max, and perhaps consider couples therapy.

The preliminary write up for the panel I refer to above speaks of what is now called "ADHD" as a valid symptom complex. But it proposes that

this terminology should not ever be used in our clinical thinking.  "ADHD," used as a primary diagnosis, has no etiologic significance, is conceptually and diagnostically distracting, leads to a paucity of thinking about a patient's early developmental history and trauma, and is therapeutically misleading.

 I hope that there will be a large scale movement to "deconstruct" the ADHD diagnosis. In essence deconstructing the diagnosis means eliminating the diagnosis.  Instead we would understand and treat the multiple parts that make up what is now called "ADHD." Such a process would result in  effective early intervention and prevention.

If I were to diagnose Max with ADHD and start him on stimulant medication, it would be in keeping with the current standard of care. Stimulants are powerful medications that have been shown in the short term to eliminate symptoms. But such an approach is simply a silencing of children. It would be a great disservice to  Max and his family.

Just as expanding the age range for diagnosis inevitably led to a rise in cases, "deconstructing" the diagnosis would lead to a significant drop in cases. The difference is that this change would reflect, not silencing of children, but rather improving access to meaningful help.

Buddhism, brain science, and parenting: towards an integration

In the past week I had two profound yet seemingly polar opposite conversations about how to promote healthy development.

The first was among fellows and faculty of the UMass Boston Infant Parent Mental Health Post-Graduate Certificate program (IPMH) about a new study, The Effect of Poverty on Brain Development, published in the current issue of JAMA pediatrics. Using brain imaging techniques, researchers showed that the children raised in poverty had smaller volumes of specific areas of the brain. They describe how the "caregiver" can "mediate" against the effects of poverty. The effects on the brain were less in the setting of "caregiver support." The group was addressing the ways in which this study fit with the abundance of new research in developmental psychology, neuroscience and genetics.

In conversation with the IPMH group, made up of many brilliant and often like- minded colleagues, who I affectionately refer to as "my peeps," I expressed concern that the exclusive focus on "brain science," where parents are referred to as "mediators," the emotion is excluded. It can become a way to distance from, or even leave out, the passion inherent in these profound love relationships.

Perhaps even more worrisome, I said, is that by making the discussion primarily about poverty, there is a risk of creating a kind of "us-them" mentality.  Certainly there are plenty of well-off families raising children in an environment of high stress and emotional neglect. Similar to the focus on "brain science," it becomes another way of distancing from the problem. 

I shared with the IPMH group my recognition that pointing to the value of listening, of creating an environment of respect for all parents and children, is seen by many as "soft." For example, I felt very alone when one pediatrician referred to my work, in a none-too-kindly tone as, "that baby whisperer stuff."

I knew I was not alone when the second conversation occurred a few days later at  a workshop at Austen Riggs entitled The Interplay of Psychoanalysis and Buddhism: Partners in Liberation. It was all about emotion and interconnectedness.

In a post a number of years ago, I wrote about receiving a letter from a reader who had been "awakened by the tradition of Zen Buddhism" and found my that my work, as described in my book Keeping Your Child in Mind ( see excerpt below), resonated with his experience.

Being understood by a person we love is one of our most powerful yearnings, for adults and children alike. The need for understanding is part of what makes us human. When our feelings are validated, we know that we’re not alone. For a young child, this understanding helps develop his mind and sense of himself. When the people who care for him can reflect back his experience, he learns to recognize and manage his emotions, think more clearly, and adapt to his complex social world. 

When families come to see me in my pediatrics practice for “behavior problems,” both parents and children feel estranged and out of control. They are disconnected, angry, and sad. I help them recognize each other. Meaningful change happens when we share these moments of reconnection. 

While I do not know very much about about Buddhism, I have been greatly influenced by psychoanalysts D.W. Winnicott and Peter Fonagy. I attended the workshop because I was curious to learn more about the relationship between Buddhism and psychoanalysis. In particular I was interested in the place of mourning, for I have increasingly come to recognize that meaningful change, and with it the joy of connection, occur most often when parents move through moments of profound sadness.

Workshop leader Joseph Bobrow spoke with a kind, gentle manner while conveying a sense of quiet authority that was calming and containing. He described the Buddhist notion of "re-authoring our suffering" of "representing our suffering in safe circumstances without shame" so that the story can "take its place in a hierarchy." He described "riding the waves of affect" to "transmute them in to the waves of life." He spoke of "transmuting sorrow" so that it does not "hijack" us." He spoke of how the therapist's "presence of mind," is what  calms, regulates and heals the patient.

When parents are flooded with stress and feeling overwhelmed by their child's behavior, I may ask them to slow down and describe in great detail a specific moment of disruption. This can be very difficult to do. Listening to Bobrow speak about meditation and Zen Buddhism, I heard many links to this process. Meditation can be about noticing how we become derailed by patterns of  thought and behavior. Similarly, by slowing things down, parents become aware of how their child's behavior provokes them, and how they may unintentionally attribute meaning to their child's behavior that is markedly different from the child's true intention.

If a parent recognizes in his response to his child's behavior a surge of rage that is linked to a memory of his own father slapping him across the face, the tears may start to flow. Now we have an opportunity to, as Bobrow said "use the suffering to turn straw in to gold." For in the face of this realization, of this "riding the wave of affect" this father can "re-author the suffering" and in doing so separate his own experience from that of his child. It is just this slowing down that helps him to see his child as himself. In turn the child, himself feeling recognized and understood, becomes calm.  This "meditative" process can be what underlies the moments of profound joy and connection between parent and child that follow.

My two experiences this week seem at first glance to be worlds apart.  I wonder if a piece Bobrow wrote on his Huffington Post blog following the Newtown shooting might point in the direction of integration.

We are helpless, we want it fixed, and become prone... to either-or thinking. But there is no silver bullet. Silver bullet, compartmentalized thinking is the problem. Cumulative trauma compromises the capacity for making connections, for holistic reflection. At it's extreme, the other becomes "not me," so I can eliminate him or her with impunity, Intellectually, it's like bubble living: psychology here, culture there, economics somewhere else. Climate? Fuhgetaboutit. We must grasp our fundamental interconnectedness, and with it the intimate and often unseen interplay of psychological and cultural forces and social and political action.

 I wonder if a third conversation, including both my IPMH colleagues and Bobrow, would lead to some real progress.

Authoritarian parenting vs. parenting with authority

Authoritarian parenting, as in "my way or the highway," and its opposite, permissive parenting with lack of limit setting, may be linked with difficulty with emotional regulation in children. In contrast, an "authoritative" parenting style is associated with an enhanced capacity for emotional regulation, flexible thinking and social competence. An authoritative parenting stance encompasses respect for and curiosity about a child, together with containment of intense feelings and limits on behavior.

Parental authority is something that in ideal circumstances comes naturally with the job. It is not something that needs to be learned in books from "experts." In fact our culture of  "advice" and "parent training" may unintentionally undermine that natural authority.

But what might cause a parent to lose that natural authority? Stress is far and away the most common culprit. That stress might be in part coming from the child himself, if, for example, he is a particularly "fussy" or "dysregulated" baby. It might come from the everyday challenges of managing a family and work in today's fast-paced culture, often without the support of extended family. It may come from more complex relational issues between parents, between siblings, between generations.

When I work with families of young children, my aim is to help parents reconnect with their natural authority. By offering space and time to listen to their story, including addressing the wide range of stresses in their lives, my hope is that together we will make sense of, or find meaning in, their child's behavior. Armed with this understanding, "what to do" usually follows naturally.

I have learned that it is important to be explicit about this approach. As I write on my website:

Parents often come to a pediatrician with expectation of advice and judgment. Our culture may support this expectation by our reliance on “behavior management” and increasingly on medication to treat “behavior problems” in children.

Some guidance about "what to do" may naturally enter in to the conversation. But I have found that premature "advice," without full understanding of the complexity of the situation, can often lead to frustration and failure. In contrast, when a parent has that "aha" moment of insight, the joy and pleasure that comes from recognition and reconnection, for both parent and child, can be exhilarating.

What might redefining "term pregnancy" mean for parents and babies?

So far the discussion on the policy change by the American College of Obstetrics and Gynecology (ACOG) has focused on the implication for timing of delivery. While previously babies had been considered "term" at 37- 42 weeks, the new policy defines term as 39-40 weeks. Babies born at 37-38 weeks are considered "early term" and those born at 41-42 weeks "late term."

The main consequence of this policy change is an official recognition that babies at 37-38 weeks are still not optimally mature for delivery.  The main objective of the policy is to "expand efforts to prevent nonmedically indicated deliveries before 39 weeks gestation*." In other words, doctors should not electively induce delivery or perform c-sections before 39 weeks. An article in Time magazine on the subject refers to a recent study showing an increased incidence of medical complications in what are now officially "early term" deliveries.

But given my interest in the parent-baby relationship and its impact on healthy development after birth, I had a different take on the significance of this change. Many babies born at 37-38 weeks are not induced or delivered by c-section. For a range of reasons, most of the time not an identifiable one, a mother may spontaneously go in to labor at 37 weeks. And, in contrast to the babies in the above study, the vast majority of these babies do not end up in the neonatal intensive care unit. They are in the regular nursery for the typical 48 hour stay.

My hope is that the policy change will focus more attention on the vulnerabilities of these babies.  The important question is,  "What is the implication for these babies who are not at optimal states of maturity, yet are cared for along side the now "term" babies and treated by professionals as if they are no different?" I put this question to a colleague of mine who is a hospitalist in a major teaching hospital in Boston. Her full time job is to care for newborns and parents following delivery and up to discharge in the regular nursery.

Personally I think this more nuanced classification of who the "full-term" baby is will be important for the parents and other professional who are supporting and teaching the family in the early weeks of life - eg. nurses in the well nursery, lactation consultants and medical providers.  Currently, unless a baby is under 37 weeks, they are all seen as fairly similar in their capabilities with differences being attributed to temperament or "personality" rather than gestation maturity.

There's a continuum to observed physiological parameters that may not be appreciated or fully noticed when babies are lumped together as full-term between 37-42wks; these include degree of sleepiness, subtlety of feeding cues, amount of energy reserves, ability to regulate state changes, muscular tone to name a few.  All of these impact the newborns' behaviors; especially feeding which is a primary focus for parents with their newborns.

Understanding that their infant's capabilities are related very often to his/her gestational age will reassure parents about their own capabilities as they learn to observe/make sense of their new infant's behaviors/cues with a more informed/understanding eye and less self-blame when trying (or struggling) to feed or to calm or to awaken their newborn.  

As my colleague wisely points out, what it looks like in real life when a baby is not "optimally mature," is that the baby may be difficult to arouse,  cry more or in general be more challenging to care for. Much of a new parent's sense of competence comes from successfully feeding her baby. If the baby's challenges with feeding are not identified and linked to his early gestational age, a parent may experience feelings of frustration and failure. She may abandon breast feeding or slide in to depression as she struggles to meet the needs of her baby.

In previous posts, I have referred to a wonderful tool, the Newborn Behavioral Observation System, that offers the opportunity to identify a baby's unique strengths and vulnerabilities.  This video of a brief excerpt of the NBO with a 3-day-old infant shows the newborn's tremendous capacities for communication. The NBO offers the opportunity to look at these qualities in a systematic way.

My hope is that now that the ACOG has officially identified these "early term " babies as vulnerable, professionals who interact with these families will offer parents the opportunity to identify possible challenges and develop strategies to manage these challenges, which with care and attention will resolve in a short time as the baby matures.

*Gestational age refers to the number of weeks since a mother's last normal menstrual period.

Moving beyond the DSM paradigm of mental health care

A paradigm is a way of thinking about things. For the past 60 or so years, our thinking about mental health and illness has been dominated by what can be referred to as the "DSM (Diagnostic and Statistical Manual of Mental Disorders) paradigm." What this looks like in everyday practice is that when a child is referred to my behavioral pediatrics practice for say, anxiety, the questions that parents, referring doctors, and teachers ask is, "Does he have anxiety disorder?" followed by  "How to we manage his behavior?" and "Does he need medication?"

The DSM paradigm has been useful as a way of organizing our thinking. But it is important to recognize that these "disorders" of anxiety, depression, ADHD etc, are simply lists of symptoms that tend to go together. They do not correspond to any known biological processes in the way that, for example, diabetes is a result of lack of insulin.

When the DSM system was first created, we did not have the powerful health insurance and pharmaceutical industries that we have today. Because of the existence of these entities, we are currently in a position of being forced in to a very narrow view of mental health and illness.

The DSM system is a black and white paradigm with only the possibility of "normal" or "disordered."
According to the DSM paradigm, if the answer to the first question about my anxious patient is no, and there is no diagnosis, there is no insurance coverage, and so no help. But clearly such a family is struggling.

 We need a paradigm shift, defined as a fundamental change in approach and underlying assumptions. A new paradigm is needed that gives room for the complexity that we have learned from the abundance of research at the interface of developmental psychology, neuroscience and epigenetics.

The child above may have a strong family history of anxiety traits. He may have a strong genetic vulnerability for anxiety. However, if a parent who shares these traits was slapped across the face for her "difficult behavior" when she was a child, she may become so overwhelmed with stress in the face of her child's challenges that she is unable to help him to manage his anxiety. Marital conflict, perhaps exacerbated by the stress of a child who is struggling, can further add to the complexity. The environment in which this child grows and develops will determine the way in which his genetic vulnerability is expressed.

As I described in a previous post, the field of infant mental health offers such a paradigm. It is relational, developmental and founded in the basic principle that behavior has meaning. It gives us a way to organize our thinking about the problems of the family I describe above.  It offers a path to treatment, namely to support the efforts of the child's parents to recognize the complex meaning of his behavior. Once parents feel heard and understood, and have the opportunity to make sense of their child's behavior, they will be better able to help him manage his anxiety. They might involve him in physical activities or creative activities that help him to feel calm in his body. They might get help for their own relationship. They might work together with the child's teachers to strategize about how to support him in the school setting.

Thanks to my book, Keeping Your Child in Mind, I had the honor of being invited to give the Paul A. Dewald lecture this week in St Louis.  My book is about the idea that rather than jump  "what to do" about a child's behavior, it is important to simply "be" with that child,  to think about that child. As I prepared the talk I came to recognize that the same holds true for our whole system of mental health care.  Before we can plan "what to do" to apply the wealth of research I refer to above, we must first recognize that we need to "think" differently. We need move beyond the DSM paradigm and embrace a new paradigm; to facilitate a paradigm shift. An important first step is to name it as such.

Reflections on the government shutdown: why is health care so threatening?

 I may be putting myself out on a bit of a limb here, but the draw of the blog makes it hard to sit silent while our country heads towards disaster.

As I listen helplessly to a report on NPR  about our country being in the grips of an irrational game of chicken, I found myself being curious about the motivations of the tea party conservatives. Drawing a lesson from psychoanalyst Peter Fonagy, who identifies the ability to attribute motivations to behavior as a uniquely human characteristic, I wonder if taking a stance of curiosity rather than anger might be useful.

This led me to consider another psychoanalytic construct, namely that of transference.  The tea party hardliners refer to Obamacare as an invasion of privacy. This idea is grotesquely depicted in the commercial showing a creepy Uncle Sam invading a gynecologic exam. Before he enters, the patient,  a young woman, is being cared for by what appears to be a kind, motherly doctor.

The notion of transference describes how strong feelings from a past relationship, often with a parent, find there way in to a current relationship. This phenomenon can occur in relationships with spouses, children, co-workers, in addition to the setting where Freud originally identified it, namely in the patient-therapist relationship.

In the intimacy and privacy of the patient-doctor relationship, such as that between a young woman and her female gynecologist, these type of transference feelings naturally occur. That made me wonder if to those who made the commercial, Obamacare, as represented by Uncle Sam, in some way represents a third invading the primary caregiver-child relationship. If so, that might help explain the intransigent behavior of those who are unable to accept that Obamacare, or the Affordable Care Act, is the law, and are willing to hold the country hostage rather than face that fact.

But Obamacare is not a threat to that intimate private relationship. In fact, if it works, and health care costs do go down, and insurance companies lose some of their power, it may in fact strengthen the relationship.  With increased emphasis on prevention, the healing power of the patient-doctor relationship might be brought in to better focus than under the current system, when doctors are forced to see more and more patients in less and less time.

Mental illness and motherhood: lessons from Miriam Carey

We do not have medical records or diagnoses. The news is filled with speculation. What we do know is that Miriam Carey’s one-year-old daughter lost her mother, and that because the incident occurred in Washington D. C. in front of the White House, it is shining a spotlight on the subject of mental health and motherhood. And the message should be simple. Diagnoses don't matter. As part of our nation's health care system (another complex and fraught subject this week!) we must provide a safety net for mothers who are struggling emotionally in the weeks and months following the transition to motherhood.

Recently in my role as director of Newton-Wellesley Hospital’s Early Childhood Social Emotional Health program I have had the privilege of participating in a mother-baby group on a regular basis. During the 90 minute session, as these moms share feelings about such things as sleep deprivation, navigating new territory with a spouse, and going back to work, the babies cycle through sleep, alert interaction,  fussy periods, crying and feeding. These mothers, all of them doing this for the first time, intuitively guide their infants through multiple transitions while simultaneously engaging in meaningful conversation.

But it doesn’t always go well. Almost every session, there is a mother-baby pair who struggles. A baby may scream inconsolably, and his mother may leave, overwhelmed by helplessness and shame despite the reassurances from the other moms and group leaders.  A mother may break down in tears as she describes the way her own family is not supportive, and how alone she feels. The contrast between the easy attentiveness of the rest of the group, and the pain these mother-baby pairs are experiencing is striking. We expect motherhood to be a time of falling in love; a time of joy and bliss.  When it is not, the suffering can be profound.

There is nothing quite like the aloneness of mental health struggles in the setting of motherhood. I recall being startled by the story of  one mother in my behavioral pediatrics practice who had struggled with severe postpartum depression. She told me that she had experience relief when her father died when her daughter was about a year old. It was not that she didn’t love her father. But in sharing the grief with her mother and siblings, she no longer felt so terribly alone.

The Massachusetts Postpartum Depression Commission, led by Representative Ellen Story,  in collaboration with such organizations as MotherWoman and the Massachusetts Child Psychiatry Access Project, is working hard to provide a safety net for every mother-baby pair who is struggling in this way.

Through a combination of screening, support groups and a network of clinicians who are experienced in working with mothers and babies in the setting of perinatal emotional complications, the aim is to be able to identify and treat every one of these pairs.

This type of effort is also occurring on national level, through such organizations as the National Coalition of Maternal Mental Health. Perhaps the attention on the issue, due to the fact that an incident involving a car chase occurred on Capitol Hill, will give some meaning to Miriam Carey’s daughter’s loss.