Is ADHD a real disorder? Part 2

A number of people commented that my previous post seemed unfinished in that I did not offer an alternative approach. This is a valid point, and in part due to the fact that my household has been under siege by the flu. I decided to republish a post from two years ago (before I wrote for the Globe.) It offers an example of my approach, which I describe in detail, along with the research to support it, in my book Keeping Your Child in Mind: Overcoming Defiance, Tantrums, and other Everyday Behavior Problems by Seeing the World Through Your Child's Eyes. 

Holding A Child in Mind

Sam burst into the office, a two-year-old wild bundle of energy. Squealing with delight--or was it distress; it was hard to tell--he ran from toy to toy not looking at me or his mother, Jane. He was unable to engage with anything. Jane had brought him to see me in my pediatric practice because, “he hits me, has explosive tantrums, and I can’t take him anywhere.” She sank into the couch. I sat on the floor, wanting to listen to Jane, but also to include Sam in the visit. At first, I focused my attention on her story, while Sam continued his frantic exploration of the room. 

Jane described a scene at the playground. The other mothers had been engaged in easy conversation, but she was on edge. She knew Sam was “inflexible” and at any moment could go from happy play to a full-blown tantrum. Sure enough, as she tried to join in the group, she saw him getting upset because his toy car was stuck. She rushed over to calm him, but his crying escalated. As the other kids and moms turned to look, she quickly went from embarrassment to rage. She yelled at Sam to cut it out. This only made him scream more. Finally, she grabbed him, her bag and his toys and ran to her car, where she collapsed in tears of helplessness.

Things had not been easy for Jane. Sam’s father had abused her and was in prison. She was afraid when she felt Sam’s anger that he would turn out like his father. Of her own mother she said, “She was never there for me.” Jane was frustrated and bewildered by the fact that Sam could relate to other people, yet reserved all his difficult behavior for her.

At the beginning of the visit, Jane made several awkward attempts to interact with Sam, but without success. She was anxious and her body language felt intrusive, which seemed to cause Sam to withdraw. As she opened up and shared more of her painful feelings with me, however, an interesting transformation occurred. Sam began to engage in more focused play. Mom and I talked about what Sam was doing, observing together how he was calming down. At first he talked to me, bringing me toys and naming them and describing what he was doing. But then he spontaneously ran over and gave his mother a hug. Her whole body relaxed, she leaned forward on the couch toward him, her pleasure and relief palpable in the room. Sam began to engage her in his play, and to communicate with her. Jane told me that she had been reluctant to come for the appointment, but was glad she had.

Being a parent of such a child is a hard job. Raising a child alone, without support from extended family or a spouse, is even harder. In our culture of advice and quick fixes, in seeking help for her problems with him, Sam’s mother would find many who would offer “expert” advice about how to manage her child’s behavior. An increasing number would recommend some type of medication to control his “hyperactivity.” Helping her to be fully emotionally present with her child--supporting her in the challenges she faced as a mother--is not a common approach. 

Yet current research at the interface of developmental psychology, neuroscience and behavioral genetics is showing that it is just this type of intervention that will help children like Sam to manage strong emotions and relate to other people. A child’s mind grows and develops when the people who are most important to the child are able to think about and understand a child’s experience from the child’s perspective, without being overwhelmed or shutting down. A parent’s capacity to “hold the child in mind” leads to a child’s increased cognitive resourcefulness, greater social skills, and better capacity to regulate emotions. If we -pediatricians, teachers, therapists, grandparents, neighbors--can help a mother like Sam’s to join her child, to accept his “low frustration tolerance” as part of him, not a reflection of her own failure as a parent, then she can help him regulate his frustration. He can then learn to manage his feelings on his own. Most important, if she can do this, she may actually change the way his brain handles stress and strong emotions.

Is ADHD a real disorder?

I have deliberately given this post a provocative title to offer a counter weight to the outpouring of news covering the California study demonstrating a close to 25% increase in ADHD diagnosis from 2001 to 2010.  I will say at the outset that I am not against medication, and recognize that a small percentage of children who have the diagnosis of ADHD may have a well-defined neurologically based difficulty with focusing and attention.  If such  a child is already school-age and falling behind academically, treatment with stimulants may protect that child from the damaging effects of low self esteem.

However, for the vast majority of children who have this label, things are much more complex. ADHD is diagnosed by DSM criteria that define the disorder by symptoms alone. In clinical setting in which these diagnoses are made, usually with one 50-minute visit for diagnostic evaluation and  subsequent medication checks in 15-30 minutes at 3 month intervals, the child's story is usually not heard.

This story may be of  an active, curious boy too restricted by the highly structured setting of today's kindergarten classrooms (a November 2012 study showed that the youngest in the class was 50% more likely to be treated with stimulants for ADHD), or of a child with sensory hypersensitivity who is unable to manage the barrage of sensory stimuli in a lunchroom or hallway.

The story may be one of a child who witnesses domestic violence or a parent who actively abuses alcohol, or both. A child may herself have been abused. In my behavioral pediatrics practice I have listened to countless stories of children, some as young as 2, who has been suspected to have ADHD. I find almost without exception a mulilayered story, sometimes involving multiple generations, that represents a complex interplay of biology and environment. The dignosis of ADHD as defined by DSM in these cases represents an artificial construct.

This past week I attended the National Meeting of the American Psychoanalytic Association in New York. Multiple excellent presentations offered a refreshing change from the oversimplified approach that is now the standard of care in both pediatrics and child psychiatry.  Dr. David Mintz, a psychiatrist who has written extensively about what is termed psychodynamic psychopharmacology, in his presentation, entitled "Recovery from Childhood Psychiatric Treatment," addressed the complex developmental meaning of medication. The presentation was filled with rich insights from his research and clinical experience, including, for example, his observation that a pill is often used to localize family pathology in a concrete way in one child.

Another highly instructive presentation came from Jack Novick, co-author with Kerry Kelly Novick of the book Emotional Muscle:Strong Parents, Strong Children, on the out-of control child. I was particularly struck by the opening paragraphs to this presentation, which offered an alternative model, similar to what they describe in their book. The paper is not yet published, but the authors gave me permission to use it. I have included the quote in its entirety, as it is an apt response to the current ADHD study.

Children Out Of Control: Working With Unregulated Affect

Jack Novick and Kerry Kelly Novick

Vulnerable Child Workshop

APsaA, New York, January 2013

There seems to be an exponential increase in the number of children who are described by parents, teachers and therapists as out of control. How are we to understand this kind of behavior, and how as therapists are we able to intervene and help restore these children to the path of progressive development? Currently the tendency is to diagnose these children as having neurological difficulties characterized as ADHD, OCD, executive function disorder (EFD), pervasive developmental disorder (PDD), or, increasingly, bipolar disorders.            

These children now seldom come for psychotherapy, but instead are treated by their desperate parents and teachers with reactive, repressive models of external behavioral controls, almost a reversion to 19^th-century modes of authoritarian domination. More perniciously, there is an explosive increase in the prescription of stimulant, anti-anxiety and antidepressant medications, as well as widespread off-label use of antipsychotic drugs. The assumption seems to be that there is a one-to-one relationship between atypical behavior and some specific brain disorder. This of course is the age-old dream of finding a single cause in the body or the mind.

            Recent neuroscience investigations, utilizing advances in the development of computer algorithms for classifying MRI images, have made possible large scale studies of normal and atypical brain development. These are able to capture any changes associated with these diagnoses. In an overview of such studies the authors conclude, "There is no identified 'lesion' common to all, or even most, children with the most frequently studied (psychiatric) disorders"             

            Ignoring such findings, pediatricians, psychiatrists and other clinicians continue to prescribe at ever-growing rates. ADHD and bi-polar diagnoses and their accompanying prescriptions have increased drastically in the past twenty years. 2.5 million American children are medicated for ADHD (10% of all 10-year-old boys); between 1994 and 2003 the number of children diagnosed with bi-polar disorder increased 40-fold. The proportion of underprivileged and minority children sedated for life is a blot on our health system, a social/political disgrace, and a permanent drain on our economy. Despite all the millions spent by pharmaceutical companies in marketing these drugs, the number of children struggling with such troubles continues to rise. If this rate of treatment failure occurred with a strictly medical treatment, the drugs would be withdrawn. 

Hope for mothers and babies at Boston's State House

Attending a meeting of Representative Ellen Story's Postpartum Depression Commission is always an uplifting experience. Talented, motivated, creative and hardworking people from a wide range of disciplines gather to figure out how to best address this significant public health problem. There are social workers, psychiatrists, pediatricians, obstetricians, health insurance industry representatives, and a range of others. There was a doula at the meeting this past week.

Representative Story told us about a pilot project based in two health centers. The project grew out of the recognition that mothers and babies are frequently at the office of a health care provider in the first weeks and months.  This model would capture a large number of families.   A person trained in working with mothers and babies together would be available for hour-long sessions for mothers in the postpartum period who are particularly stressed and overwhelmed.

Certainly if postpartum depression is identified, it is important to have a system in place to refer the mother for treatment. But the fact is that a mother who is struggling in the postpartum period is usually overwhelmed by the baby.  It is essential to bring the baby in to the work from the start. A person experienced working with both mothers and babies can listen to the mother while supporting her efforts to read the baby's signals and manage the normal challenges of sleep disruption, fussiness and feeding difficulties that come up in early infancy.

In my office at Newton-Wellesley Hospital's Early Childhood Social Emotional Health Program I have a special room for mothers and babies that has pastel rugs and soft chairs. It is quiet, private, and filled with light from a large window. One of my young clients called it a "feel better room." I think of it as what pediatrician/psychoanalyst D.W. Winnicott referred to as a "holding environment," where both mother and baby can feel safe, contained and understood.

It occurred to me at this meeting that perhaps we should aim to have a "feel better room" in every primary care office. True preventive mental health care starts in the newborn period. I am not saying that if things go wrong in the newborn period a child is destined for trouble. However, it is a time of rapid brain growth, and it is well known that the baby's brain grows in relationships with primary caregivers. With this model, we have the opportunity to set things right from the beginning.

A child psychiatrist at the meeting pointed out that "co-location" of mental health care in the primary care setting has run into trouble because of problems of economic viability. A pediatrician then brought in to the discussion the ACO (accountable care organization) model, whose intention is to promote preventive health care. He expressed concern that the needs of adults with chronic illness would overshadow the needs of children.

We know from a large body of research, particularly the ACE (Adverse Childhood Experiences) study, that true preventive care starts with promoting healthy secure relationships in the early years. This includes prevention not only in the realm of mental illness but also chronic physical illness such as asthma, diabetes, obesity and heart disease.

This model of investing in early relationships has been endorsed by nobel prize winning economist James J. Heckman. In a recent working paper, The Economics of Child Well-Being, he writes:

There is a growing interest in the well-being of children. Such interest is supported by recent evidence from both the biological and the social sciences, which points to the importance of the early years in shaping the capabilities that promote well-being across the lifecourse. It is now recognized that human development is a dynamic process that starts in the womb. Capabilities interact synergistically to create who we are and what we become. The foundations for adult success and failure are laid down early in life... 

Prevention is more cost effective than remediation. As implemented, most adolescent and adult remediation programs are ineffective and have much lower returns than early childhood programs that prevent problems before they occur... High quality early interventions that alter early life conditions are effective ways to promote well-being and human flourishing across the life cycle.

If the ACO model is really going to fulfil its aim of preventive care, then we would do well to find a way to make it "economically viable" to have "feel better room," staffed with professionals trained in work with mothers and babies, in every primary care office in the country.

I hope that the pilot program Representative Story referred to will serve to provide evidence for what the abundance of research already shows us will likely be a very good idea.

Towards a new (or return to an old) paradigm of finding meaning

I am fortunate that my father is my greatest fan, although, perhaps because his original language was German, it has taken me years of patient listening and translation to recognize this fact. Recently, after receiving a biography of Charles Darwin for his 89th birthday, he has taken to comparing me to Darwin.

 I would certainly be more modest, recognizing that the ideas I write about draw on the work of great thinkers and researchers, together with my own clinical experience.   One of these great minds is Sigmund Freud. His discovery of the unconscious, his greatest contribution, is so much a part of the way we think and behave that is difficult to appreciate the revolutionary nature of this idea.  Even before he used the term unconscious, in his work as a neurologist, his original discovery was that symptoms have meaning.

Freud did not write very much about development under age three, perhaps because there was only so much he could do. However we do know that when he was a toddler his younger brother died. I wonder how much this early experience, and his mother's concurrent grief over the loss of her child, influenced the development of Freud's theories, though perhaps in a way that he himself was not conscious of.

Fortunately the next wave of researchers, including such great minds as John Bowlby, Peter Fonagy and Ed Tronick, and many others in the growing discipline of infant mental health, have focused on early development, showing that not only does behavior have meaning, but also how that meaning is co-created in relationships.

Here is an example. I have written on this blog about my growing recognition of the significance of sensory processing challenges in development.  While such a trait may originate in the child, it immediately takes on meaning within relationships. A newborn that is not cuddly and does not like to be held may evoke feelings of shame and even depression in a mother. A father who himself had sensory processing challenges but was physically abused because of his difficulties may be overwhelmed with anxiety in the face of his child's similar problems. The child's behavior takes on meaning in the context of the parent-child relationship. When a child is a newborn, it may be relatively easy to identify the relational nature of these problems. But when a child is older, there are layers of complexities, such as learning difficulties and concurrent self esteem issues that may accompany sensory processing challenges, or marital conflict that may occur in the face of a child who is struggling.  These complexities are usually out of a parent's awareness, or, returning to Freud's term, unconscious.

 As a society we have come far from this idea of looking for the meaning of behavior. Instead we treat only the symptom. Thus a child who has sensory processing challenges, unless he is working with an occupational therapist trained in infant mental health, may be treated by brushing, or listening to tapes designed to "re-program" his brain. Many parents have told me that they are actively discouraged from participating in the therapy. Yet if parent and child are separated in this way, the meaning of a symptom within the context of relationships is never discovered.

In mental health care, this shift away from the search for meaning is due at least in part to the birth of "biological psychiatry" and the hope that complex emotional struggles have a simple chemical explanation that can be solved with a drug.

On the list serve of the American Psychoanalytic Association there is currently an active discussion about the issue of CPT codes. In order for a service to be covered by insurance, a clinician must provide both a diagnostic code and a code for the type of service. An underlying problem is that our system of diagnosis, largely based on the DSM (Diagnostic and Statistical Manual)  is organized by symptoms, not by meaning. Clinicians who are used to helping people to discover meaning are restricted by a system that reduces these complex meanings to a number that corresponds to a list of behaviors. It is a deeply entrenched issue related to the whole structure of the health insurance industry and of our health care system. It is further complicated by the rise of electronic medical records and concurrent implications for confidentiality. Helping people to discover meaning that may be unconscious often involves intimate and private conversations.

This brings me full circle to my father's flattering comparison. It is indeed true that I am motivated not only to help the individual children and families I work with, but also to promote a paradigm shift in how we as a society understand human development, and, in turn, support newborns, young children and families.

Though my father is a magazine publisher, he is not a big fan of social media. He told me that Darwin kept his discoveries to himself, partly in fear of upsetting the mainstream thinking, until he had it all written down in the Origin of Species. My father suggested that I concentrate my efforts on producing my own analogous work.

He has a point. However, I choose to embrace the age of social media, and so aim to move our thinking one blog post at a time (although another book will also be forthcoming.)

Adam Lanza and Preventive Mental Health Care

In keeping with my wish for continued meaningful dialogue in the wake of last week’s horrific events, I would like to expand upon what I mean by "preventive mental health care." I am referring to relationship-based care that focuses on young children and families. All of the best science of our time, at the interface of neuroscience, genetics and developmental psychology, tells us that by supporting parents and young children together we will have the best chance to promote both physical and emotional health.

This is not to say that when there are problems it is a parents "fault," nor certainly, as many parents fear, that a young child who is struggling is at risk for becoming a mass murderer. But the brain grows in relationships, and supporting relationships supports healthy brain growth. 

Early reporting suggests that Adam Lanza struggled with severe social anxiety from a young age. This is a description, not a DSM diagnosis.  His mother apparently had some kind of conflict with his school and ended up home schooling him (early reports that his mother worked at the school where the shooting occurred, that I refer to in my previous post, turned out to be incorrect.) 

I wonder if our best chance at preventing this horrific event would have been to carefully listen to these parents, including the father, when Adam was a young child, to understand their experience and find meaningful help for the whole family.

The  piece I Am Adam Lanza's Mother originally published in the Blue Review, that has now gone viral, offers a striking up-close view of how parents suffer in the face of a troubled young child. It offers evidence for the need for intensive help for parent and child together.  Simply labelling the child with a psychiatric disorder and prescribing medication is grossly inadequate care. 

Current standards of care in psychiatry, including both the focus on DSM diagnostic category, in psychiatrist and author Daniel Carlat’s words the “what” rather than the “why,” as well as over-reliance on psychiatric medication, is more narrow than my definition. Preventive mental health care consists of careful listening and support of parent-child relationships. 

On NPR this week there was a comment made that other countries with better gun control laws do not have these kind of events. But what if the important difference is that we are seriously behind in supporting young children and families with such things as parental leave for newborn care?

I wonder if there is some insight to be gained from the venom directed against me in some of the comments on my last post. I see similar venomous in comments on similar posts.They seem to represent an underlying rage (at least among those who comment on blogs) as well as the loss of the capacity to listen to each other.  Assumptions are made about me that are completely unfounded and could easily be dispelled by simply reading my bio and or most recent blog post.

We are as a society traumatized by this event, and by the continued horror of watching the funerals of these young children. To find a way to take meaningful action in the wake of this trauma, we all need to calm down and take a collective deep breath. Perhaps the opening point of meaningful dialogue would be an effort on all sides to take the time to listen to each other.

Gun control and preventive mental health care to honor the lost children of Newtown

For the families who lost children, their world as they knew it has effectively ended. Yet somehow the sun rises again and the next day is here. For the rest of us grieving along with these families, the only way to move forward is to take what President Obama called "meaningful action." I interpret this to be action that is radical and significant enough that it will somehow give meaning to this unimaginable loss.

The first and most obvious front is gun control. Without access to guns, apparently the same rifles used by troops in Afghanistan and Iraq, one individual could not have done this degree of harm. The politics of gun control is not my area of expertise, but certainly the politicians must now be motivated to, as Obama said, "put aside differences" and honor these children with dramatic changes to gun control laws.

The second front is preventive mental health care. This event is the result of a deeply disturbed individual with access to guns. My inbox this morning was full of emails from mental health colleagues referring to pieces they had written for other massacres such as Virginia Tech. I hope that this unspeakable horror will be  the one that will finally lead to real change in access to preventive mental health care.

One of these colleagues wrote of how these events are often perpetrated by young adults who have not been "acting out," but rather have been quietly bullied for years and seriously neglected at home. Their symptoms may be more subtle. Yet it is difficult to imagine that there were not people in this family's life who did not recognize that this boy/young man was mentally ill.

The emerging information speaks to  a deeply troubled relationship between the shooter and his mother as being at the root of the event. Apparently he first shot his mother and then went to the school to deliberately kill the children at the school where she worked. I wonder, was the hurt he experienced in his relationship with her magnified by his witnessing of the care she gave her young charges at her job?  Of course I don't know, and this is only theory as I struggle to make sense of something that doesn't make sense.

As I said to my editor when she asked for our thoughts on this event, the trauma is perhaps too fresh for an in-depth discussion of theory and policy change. However, I am hopeful that the coming weeks and months will be filled with meaningfully dialogue of how we as a society can honor the dead children, both through gun control and improved access to quality preventive mental health care.

Where is the media coverage of the DSM V vote?

Last Sunday I awoke to a news story in our local paper, The Berkshire Eagle, about the vote by the American Psychiatric Association the previous day approving massive revisions for DSMV, the newest version of the Diagnostic and Statistical Manual of Mental Disorders. The article stated:

Board members were tight lipped about the update, but its impact will be huge, affecting millions of children and adults worldwide (italics mine.)

Figuring that this would be big news, I asked my husband if we could delay our morning hike while I wrote a blog post about it. I was sure there would be an active public discussion on the subject.

But I was wrong. Mainstream media had virtually nothing on the story. There was not one word about the DSM vote in the New York Times.  The Boston Globe similarly did not cover the story. There was a brief mention on NPR's Morning Edition on Monday. Boston.com  had my piece as well as an article about Asperger's being dropped from the new version.

There was news on the blogs. Most striking was from Allen Frances, MD, professor of psychiatry at Duke University, who was chair of the DSM IV task force. On his Huffington Post blog he wrote:

This is the saddest moment in my 45 year career of studying, practicing, and teaching psychiatry. The Board of Trustees of the American Psychiatric Association has given its final approval to a deeply flawed DSM-5 containing many changes that seem clearly unsafe and scientifically unsound. My best advice to clinicians, to the press, and to the general public -- be skeptical and don't follow DSM-5 blindly down a road likely to lead to massive over-diagnosis and harmful over-medication. 

While he defends his colleagues against accusations that they have been influenced by big pharma, he  writes that:

The APA's deep dependence on the publishing profits generated by the DSM-5 business enterprise creates a far less pure motivation. There is an inherent and influential conflict of interest between the DSM-5 public trust and DSM-5 as a best seller... The current draft has been approved and is now being rushed prematurely to press with incomplete field testing for one reason only -- so that DSM-5 publishing profits can fill the big hole in APA's projected budget and return dividends on the exorbitant cost of 25 million dollars that has been charged to DSM-5 preparation.

When MGH psychiatrist Joseph Biederman was found guilty of violating conflict of interest rules in accepting large amounts of money from the pharmaceutical industry, the news was announced on July 2nd 2011, a Saturday of a holiday weekend. A number of bloggers suggested that this timing was deliberate: an effort to bury the story.

Some may suggest that the weekend DSMV vote and lack of media coverage is related to the power of the APA and big pharma to squash controversy. For the sake of children, families and adults who struggle with mental illness, I hope that there is a more benign explanation.