ADHD and the value of uncertainty

A recent article in the New Republic, provocatively titled “ADHD Does Not Exist,” starts out well enough. The author, a psychiatrist with “over 50 years experience” points to the fact that ADHD describes a collection of symptoms, rather than their underlying cause. Using stimulants to control these symptoms, he argues, is analogous to prescribing pain medication for cardiac chest pain rather than addressing the underlying circulatory problem.

But my antennae went up when he applied his views to a case, and concluded that his patient, a 12-year-old-boy, was misdiagnosed with ADHD, when in fact he had bipolar disorder. My level of alarm rose when he went on to describe his treatment:

In William’s case, the family agreed to try medication first without psychotherapy, to see what kind of impact the pharmaceutical treatment could have. The first medication we tried, an anti-seizure drug commonly prescribed for bipolar disorder, reduced the boy’s mood and behavioral symptoms dramatically but resulted in side effects including upset stomach and dizziness. We started William on lithium, and within two months we found a dosage that worked well for him, reducing his symptoms to very mild levels, with no significant side effects.

There is no mention of developmental history or family relationships. There is no exploration of the context in which these symptoms occur, and certainly no evidence that William’s experience being bounced from medication to medication is being considered.  Dr. Saul in essence replaces one treatment of symptoms without determining the underlying cause with another treatment of symptoms without addressing the underlying cause.

The author points to a strong family history of bipolar disorder to support his diagnosis. Statistics from the National Institute of Mental Health indicate that when a parent or sibling has bipolar disorder, a child is up to six times more likely to develop the illness.

But when it comes to an individual child and family, not only are statistics meaningless, but they may also preclude exploration of the underlying cause of the child’s symptoms. These symptoms are usually due to a complex interplay of biology and environment. Statistics do not speak to the effect of early intervention in decreasing the risk.

Consider Jacob, a five-year-old boy I saw recently in my behavioral pediatrics practice. He was adopted, and two biological relatives had bipolar disorder. A pediatrician, his adoptive parents and a neurologist suspected that he too had the disorder. But with space and time to hear the story, the following emerged.

Jacob had been an easy baby. Then when he was about two, he experienced a number of significant losses. A foster child with whom he was very close was removed from the home because of behavior problems. Just weeks after his adoptive mother, Alice, learned she was pregnant, her sister died suddenly of a cerebral hemorrhage. Jacob’s maternal grandmother, in the face of the loss of her own daughter, threw herself in to caring for Jacob’s baby sister.

Jacob’s mother wept in my office as she spoke of her own loss, not only of her sister, but also of her mother who withdrew in the face of her grief. Shortly after these events, Jacob’s behavior problems began in earnest. He became alternatively clingy and aggressive. When I saw the family, no one had slept through the night for a long time.

Jacob might very well have a biological vulnerability to emotional dysregulation inherited from his parents who carried the bipolar label. But multiple losses, subsequent disruptions in attachment relationships, sleep disruption, and other factors had significant roles to play in development of his symptoms. Had he, like William, been prescribed medication for his symptoms, this story, and the meaning of his behavior, would not have been heard. For every child I see in my practice, there is a story, often equally complex, behind the symptoms.

Rather than offer time and space for the nuances, complexities and uncertainties of human behavior and relationships, the DSM (Diagnostic and Statistical Manual of Mental Disorders) paradigm, with its diagnoses of disorders based on symptoms, often followed by prescribing of medication, creates an aura of certainty, as in “you have X and the treatment is Y.” But there is virtually no evidence of any known biological processes corresponding to either ADHD or bipolar disorder (or any other DSM diagnoses, for that matter.) This certainty implied in the giving of a diagnosis and prescribing of medication has a kind of comfort, but also a real danger. There is no room for curiosity, for wonder, for not knowing.  Jacob’s behavior was a form of communication. Giving medication to control his behavior is in effect a silencing of that communication.

A recent New York Times article, “The Dangers of Certainty,” addresses this issue in a very different context. The author describes how he was profoundly influenced by the 1973 BBC documentary series, “The Ascent of Man,” hosted by Dr. Jacob Bronowski. The article describes an episode in which Bronowski discusses Heisenberg’s uncertainty principle.

Dr. Bronowski’s 11th essay took him to the ancient university city of Göttingen in Germany, to explain the genesis of Werner Heisenberg’s uncertainty principle in the hugely creative milieu that surrounded the physicist Max Born in the 1920s. Dr. Bronowski insisted that the principle of uncertainty was a misnomer, because it gives the impression that in science (and outside of it) we are always uncertain. But this is wrong. Knowledge is precise, but that precision is confined within a certain toleration of uncertainty….Dr. Bronowski thought that the uncertainty principle should therefore be called the principle of tolerance. Pursuing knowledge means accepting uncertainty. ..In the everyday world, we do not just accept a lack of ultimate exactitude with a melancholic shrug, but we constantly employ such inexactitude in our relations with other people. Our relations with others also require a principle of tolerance. We encounter other people across a gray area of negotiation and approximation. Such is the business of listening and the back and forth of conversation and social interaction.

As he eloquently put it, “Human knowledge is personal and responsible, an unending adventure at the edge of uncertainty.”The relationship between humans and nature and humans and other humans can take place only within a certain play of tolerance. Insisting on certainty, by contrast, leads ineluctably to arrogance and dogma based on ignorance.

The episode takes a dark turn when the scene shifts to Auschwitz, where many members of Bonowski’s family were murdered. The article’s author, a professor of philosophy at the New School, offers this interpretation:

The pursuit of scientific knowledge is as personal an act as lifting a paintbrush or writing a poem, and they are both profoundly human. If the human condition is defined by limitedness, then this is a glorious fact because it is a moral limitedness rooted in a faith in the power of the imagination, our sense of responsibility and our acceptance of our fallibility. We always have to acknowledge that we might be mistaken. When we forget that, then we forget ourselves and the worst can happen.

I can already hear the shouts of outrage that I dare to compare mental health care with Nazism. Having grandparents who survived a concentration camp, I know well that this is a highly fraught subject. But of course that is not what I am doing. I am simply pointing to this article as a beautiful articulation of the value of uncertainty, especially in the context of understanding human behavior.

Claudia M. Gold is a pediatrician who blogs at Child in Mind and is the author of Keeping Your Child in Mind.

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  • guest

    Honestly, I know of no thoughtful psychiatrist who would ever disagree with what is written above. It is a scholarly and well-written explanation of a concept that I think we are all in agreement with: for our patients to receive the best care, they must have more time devoted to the assessments we do and the treatment we provide.

    It takes time (sometimes a lot of it) to obtain the thorough psychosocial/developmental history that could lead to the diagnostic formulation described above. And once you have that? It takes time to provide the family and individual therapy that would be required to manage the target behavior in a non-pharmacologic fashion.

    With all due respect, what we really, really need, is not more explanations about how we should be spending more time with our patients, especially not explanations from someone who works part-time and writes about healthcare theory on the side. We need someone to write about how we can extract that time from our current healthcare delivery system, a system where I was once told “In order for the clinic to break even, you need to crank through three or four patients an hour.”

    Here’s what I would like to know: what is the business model in which the Newton-Wellesley Hospital Early Childhood Social and Emotional Development Center (or whatever), is able to provide such comprehensive multidisciplinary evaluations, given current insurance reimbursement for initial psychiatric evaluations? What percentage of the patients in the clinic are cash pay and do their fees subsidize treatment for other patients? What do the clinicians say to insurance reviewers who expect a specific psychiatric diagnosis to be made in order to authorize treatment? Where does the clinic refer Medicaid patients who need good-quality family therapy? And if the clinic provides that in-house, how does it not lose money?

    It is this type of information-sharing that would be most useful in helping others to move away from the time-starved model of assessment and treatment described above. We all know that we have a deficient model for delivering behavioral health services. Let’s work together to find some actual solutions.