ADHD treatment gone wrong: when prescriptions replace listening

Now that the letters to the editor in response to the New York Times article Drowned in a Stream of Prescriptions have been published, I am going to take advantage of this blog to publish mine.

There is one glaring error in the generally well-researched and deeply disturbing article Drowned in a Stream of Prescriptions. In a record review of Richard’s treatment the reporters found none of  “the more conventional talk-based therapies that experts generally consider an important component of A.D.H.D. treatment.” If only this were true. Just last week, AAP Smartbriefs, a review of newsworthy events in pediatrics, offered this headline Non-Drug ADHD Treatments Don't Pan Out in Study. The “psychological treatments” the study refers to are cognitive and behavioral training and neurofeedback. Talk-based therapy isn't even mentioned.

What is noticeably absent in Richard’s treatment is not talking, but listening. In the age of the 10-minute med check, there is no room for listening. If Richard was truly a well functioning person until mid-college, was his primary diagnosis schizophrenia? Was there some kind of trauma? In a world where ADHD is so quickly diagnosed, there was no time given to fully hear his story. That time that might have saved his life. 

Gym as treatment for ADHD?

An article in the current issue of the Journal of the American Academy of Child and Adolescent Psychiatry about the role of exercise in treatment of ADHD gives me hope that there is some movement in the direction of non-pharmacological treatment of problems of regulation of emotion, behavior, and attention. ( I do not use the term "ADHD" for as readers of my blog know, I believe that ADHD as defined by DSM is an oversimplified, artificial construct.)

However, the accompanying editorial entitled "Gym for the Attention Deficit/ Hyperactivity Disorder Brain?" gives me concern that this idea represents yet another oversimplification. The editorial calls for "empiric support" from "well- designed studies." Our culture has a love of "evidence-based medicine."  I hope that before embarking on these studies, there is consideration given to what a colleague referred to as "medicine-based evidence," or research based on what we have learned from both clinical experience as well as other disciplines.

Primarily what we have learned is that its not just "exercise" or "gym," but a very specific use of the body to help the brain with the task of self-regulation. In fact, for a child who is overwhelmed by sensory input and easily dysregulated, as many of the children carrying the "ADHD" label are, traditional "gym" may be a disorganizing experience.  I described this concept in detail in a previous post, Emotional Regulation in Children: Using the Body to Help the Brain. It preceded my Boston.com blog so I have re-posted it below:

I recently heard a great story from a parent in my behavioral pediatrics practice. Their son was very active and had a hard time settling down to learn, and so, before an early morning tutoring session, a very resourceful teacher suggested he ride a scooter down the empty halls to the room where a group of kids with reading difficulties met. To make it fair, the teacher allowed all of the students in the group to ride scooters to class. The kids lay on their stomachs and used their arms to propel them down the long hall. Interestingly, not only this boy, but also all of the kids in the class began to do better!

One of the best weekends of the Infant-Parent Mental Health Post-Graduate Certificate Program that I have been attending and writing about over the past year, was with child psychiatrist Bruce Perry. He spoke of the importance of what he referred to as "rapid alternating movements' in achieving emotional regulation. Dr. Perry's ideas grew out of his frustration with the traditional model of psychiatric care, where children who have experienced significant trauma are expected to sit and talk with a therapist about their experience( and of course are also medicated.) His model of intervention is based on knowledge of brain development and is termed the "Neurosequential Model of Therapeutics.'

While it is not my intention to describe the model in detail, one of the main messages, which has relevance not only to traumatized children, is that in order to think, learn and process experience, one must first feel calm. A range of activities can achieve this calm. Dr. Perry does therapy sessions with very troubled children while going on walks. Horseback riding, martial arts, drumming and dance are other activities that can serve to achieve this kind of calm. A group of fellows from the program got to try out the theory. After a long, very stimulating (and also somewhat dysregulating) day of learning with Dr. Perry, we went ice-skating. Not only was it a lot of fun, but it worked wonders in helping us to process the experience.

Often when kids are struggling in school, teachers express concern that they are "over-scheduled." But if extracurricular activities are carefully planned and well thought out, they can be considered an essential part of treatment. It is best to have some kind of a calming activity interspersed with homework, tutoring or therapy. These can be tailored to a child's particular talents and interests. Many know the story that Michael Phelps struggled terribly with ADHD. Swimming can be a very regulating activity, but some kids with learning and behavior problems also have sensory processing difficulties and can't stand to have their head under water. Clearly swimming isn't the right choice for them.

The more children I see with a range of "behavior problems," the more I recognize the importance of using the body to help the brain. Occupational therapy for young children can accomplish this goal. But as children get older, and can learn to express their feelings, parents can help them identify what works for them. This same boy on the scooter, several years later, learned to recognize that when he was feeling overwhelmed, going down to the basement to play his drums helped him to regroup. This kind of awareness, both of mind and body, can serve kids well not only in childhood, but over the course of a lifetime as they learn to adapt to their particular vulnerabilities.

Central to this notion of using the body to help the brain is that movement take place in relationships. We know that children develop the capacity for emotional regulation in the context of relationships. Things like martial arts, horseback riding and swimming involve intimate relationships with teammates, coaches and instructors.

So I hope that before psychiatrists head down the road in search of "evidence" that "gym" is good for ADHD, there is sufficient thought and attention to what kind of physical activity, how and when it occurs, and if it occurs in the context of meaningful relationships.

Behind the Scenes Look at ADHD Treatment

Recently I went to a talk given by a local "ADHD (attention deficit hyperactivity disorder) expert" to a group of primary care pediatricians. The aim of the talk was to guide these practitioners in doing "ADHD evals" given the time constraints of primary care practice.

"Its all about the rating scales," he said. "You need to train your staff to give out the right scales. The key to working kids up is getting the scales done ahead of time. Nothing happens in the office."

This doctor proudly displayed his version of the main rating scale, the Vanderbilt, which he has divided into two time slots, because "kids have different symptoms at different times of day." Evaluation and treatment of ADHD consists primarily of scoring rating scales, making a decision to use medication, and once the decision is made, having follow-up visits every three months to adjust medication dose according to symptoms and side effects.

One pediatrician, someone for whom I have great respect as a clinician, was alarmed about a 5-year-old who was placed on a very high dose of medication by another doctor. When I asked her what was going on in the child's life that might cause him to have so much trouble, she didn't know. She had changed the medication, which did in fact improve the child's symptoms. Her approach is the standard of care in pediatrics.

In other areas of medicine, we treat the underlying cause, not just the symptom. In treating bacterial pneumonia, for example, we use an antibiotic, not a cough suppressant. The Vanderbilt lists symptoms of problems with regulation of behavior, emotions, and attention, which together may be labeled as ADHD. The question should be not “How do we control the symptoms?” but rather “What is making self-regulation difficult for this particular child?” followed by “What can we do to help promote self-regulation?”

Recently I saw several children who had been diagnosed with ADHD but medication "didn't work". One mother told me about her own struggles with untreated depression. Another child spent weekends with an actively drinking alcoholic father. A third child quietly spoke with her mother of being frightened when she pulled her hair and hit her.

Nowhere on these rating scales does it ask about family history or life stressors. According to the current standard of care it is possible to diagnose and treat ADHD without ever learning about any of this history. Detailed family history (see previous post), as is well described in the book A Lethal Inheritence, is essential to diagnostic evaluation. In addition, detailed early developmental history may reveal significant sensory processing problems that have been unrecognized.

When I have written about ADHD in the past, I usually get a number of angry responses from parents who say everything is fine in their family and I shouldn't blame them for the problem. In my experience, about 10 % of kids seen for "ADHD eval" have what I refer to as "straightforward ADHD." They have symptoms and an extensive family history of inattention and/or hyperactivity with no other issues. If you are in that 10%, this blog post is not about you.

Giving a list of therapists does not solve the problem, because the child is usually the "identified patient." Family therapy can be an important component of treatment when a child struggling with self-regulation, as is well described in the recent book, Suffer the Children: The Case against Labeling and Medicating and an Effective Alternative. Furthermore, once a child is placed on medication, his behavior is "better" for the short term and the motivation to do the more challenging, time intensive work to uncover the cause is lost.

The term "ADHD eval" implies only two options- a child does or does not have ADHD. It leaves no room for curiousity about the meaning of behavior. Then there is the term "co-morbidity." This simply offers the opportunity for more labels without exploring the cause of symptoms.

There is a reason why, as one of the pediatricians at this presentation bemoaned, a parent may say, "by the way" just when when a doctor has his hand on the doorknob to leave. It takes time to develop sense of safety and trust to be able to say what's really important.

Fortunately I work in a practice that is open to a different approach. Here are some initial changes I propose:

1) Schedule the visit as "evaluation of problem of attention, behavior and emotion," or more simply "behavior problem,"rather than "ADHD eval"

2) Have a minimum of two 50 minute visits for an evaluation

3) See parents alone without the child for the first visit. Aim to include both parents whenever possible

4) Goal of initial evaluation is to get detailed family and social history, and to offer parents an opportunity to be heard. Very often the parent and/or couple need support and possibly referral

5) Medication may be considered for an older child if he is unable to learn or function in a social environment without it. Equal attention must be given to other interventions, including addressing diet, sleep, and physical activity

Such an approach involves a change in expectation on the part of parents, teachers and clinicians. Parents are often under tremendous pressure from teachers to get a prescription for medication.

Stanley Greenspan's book Overcoming ADHD: Helping Your Child Become Calm, Engaged, and Focused--Without a Pill offers an excellent holistic approach that is founded in quality scientific research. One key component of his treatment is to support "reflective thinking." This involves helping a child to recognize both his strengths and challenges, and to develop strategies to manage his own unique vulnerabilities.

"We don"t have time" is not an acceptable answer. Changes must be made in our healthcare system to insure better reimursement for time spent listening in this way, and to improve access to quality mental health care services.

This is child's life we are talking about. If the root cause of the problem is not addressed, there may be years of medication adjustment until something bad happens- car accident, school failure, violent crime, prison. If I sound alarmist, it is because I am alarmed. The current standard of care of ADHD treatment, particularly now that diagnosis is extended down to age 4, effectively silences huge numbers of children. We need to give these children a voice.