ADHD, the aggressive child and the elephant in the room

(Three recent news items lead me to republish a post that predated my Boston.com days. The first is a new study showing that antipsychotics and stimulants can be used together in treatment of aggression associated with ADHD. The second is a recent New York Times article, The Selling of Attention Deficit Disorder, the third an article from today's New York Times: ADHD Experts Re-evaluate Study's Zeal for Drugs. I am hopeful that 2014 will be  a year of radical rethinking about what we now call "ADHD.")

In the Tony award winning play God of Carnage two couples meet in an elegant living room for an ostensibly civilized conversation about the aggressive act of one couple’s child against the other’s. The meeting soon degenerates to reveal the underbelly of conflict in the two marriages. Husband and wife hurl insults, precious items and even themselves with escalating rage. We see, as they attempt in vain to focus on the children’s behavior, the proverbial “elephant in the room.” 

It brought to mind another depiction of the nature of the elephant, presented by the pharmaceutical industry. A recent issue of The Journal of Developmental and Behavioral Pediatrics features prominently a two page ad from Shire, makers of drugs commonly used for treatment of Attention Deficit Hyperactivity Disorder (ADHD). A mother and her son sit at the desk of a doctor in a white coat. Behind them is a large elephant draped in a red blanket on which is printed the words, “resentful, defiant, angry.” The ad recommends that these symptoms, in addition to the more common symptoms of inattention and hyperactivity, should be addressed. This is the message: doctors should be treating these symptoms with medication.

From my vantage point of over 20 years of practicing pediatrics, where I sit on the floor, not in a white coat, and play with children, I believe that the play’s depiction of the nature of the elephant is much more accurate and meaningful than that of the pharmaceutical industry. In the play the elephant is the environment of rage and conflict in which the aggression occurs, while in the ad the elephant is the child’s symptom. Consider these two stories from my pediatric practice (with details changed to protect privacy.)

Everything was a battle with six year old Mark. Though I asked both parents to come to the visit, Mom came alone. She was furious.”Tell me what to do to make him listen.” We had a full hour visit, and as she began to relax, she shared a story of constant vicious fighting between herself and her husband. Mark, who had been playing calmly and quietly, took a marker and slowly and deliberately made a black smudge on the yellow wall. His mother was too distracted by her own distress to stop him. I said, “You cannot draw on the wall, but maybe you are upset about what we are talking about.” He came and sat on his mother’s lap. She reluctantly revealed her suspicion that his angry behavior was a reflection of the rage he experienced at home. She agreed to get help for her marriage, and Mark’s behavior gradually began to improve.

Jane’s parents became alarmed when her aggressive behavior began to spill over into school. Her third grade teacher told them that not only was she distracted and fidgety, but she seemed increasingly angry. At our second visit, Dad became tearful as he described his cruel and abusive father. He acknowledged being overwhelmed with rage at Jane when she didn’t listen. He yelled at her and threatened her. He longed for a positive role model to learn how to discipline her in a different way. He realized he needed help to address the traumas of his own childhood in order to be a more effective parent for Jane. 

If the elephant in the room is the child’s symptoms, as the drug companies would have us believe, then medication may be the solution. Children taking medication for ADHD often tell me that it makes them feel calm. The full responsibility for the problem then falls squarely on the child’s shoulders. 

For Mark and Jane, and countless children like them, the elephant in the room, however, is not the child’s symptoms. It is the environment of conflict in which the symptoms occur. If the family environment is the elephant, the treatment of the problem is not as simple as prescribing a pill. Families must acknowledge and address seemingly overwhelming problems. The parents’ relationship with each other, and each parent’s relationship with his or her own family of origin, often contributes significantly to this environment. 

In the supportive setting of my office, Mark and Jane’s parents were freed to think about their child’s perspective and experience. Rather than focusing on “what to do” they understood what their children might be feeling growing up in an environment of conflict and rage. This ability for parents to think about their child’s feelings has been shown, in extensive research at the intersection of developmental psychology, genetics and neuroscience, to facilitate a child’s development of the capacity to manage strong emotions and adapt in social situations. 

In another interesting link between this ad and God of Carnage, one of the fathers is an attorney representing a drug company. He speaks loudly on his cell phone, seemingly oblivious to the effect of his behavior on the other people in the room. His conversation reveals the profit motive of the drug company taking precedence over the well being of the patient. 

God of Carnage was written by Yasmina Reza, a French playwright. While the play itself is hugely entertaining as a witty farce about family life, an important message was in a brief scene at the very end. The telephone rings. The mother answers. It is her daughter, all upset about the loss of her pet hamster, which the father had “set free” one night because he was annoyed by the animal’s habits. Suddenly the mood of the play, which was lively with scintillating dialogue throughout, becomes serene as the mother speaks lovingly to her distraught daughter. Perhaps most of the audience was barely aware of the sudden mood change. Yet it lifted this delightful play into universal significance. Freeing herself from the preceding chaos, she calmly gives her full attention to her daughter’s experience.

The popularity of the play gives me hope that people are hungry for a different way to think about children and families than that offered by the pharmaceutical industry, which, with the money to place an attention getting ad, has a very loud voice. It is joined by the equally loud voice of the private health insurance industry, which supports the quick fix of medication over more time intensive interventions. In contrast, Mark, with his black smudge on my yellow wall, has a very small voice. His voice says “Please think about my feelings, not just my behavior.”

His voice is particularly critical now, as our country strives to create social policy and a health care system that values prevention and primary care. Parents, if they are supported and nurtured, know what is best for their children. We as a culture must demonstrate that we respect both the difficulty and the critical importance of being an effective parent. In this way we will be able to help children, not only by treating their symptoms, but giving an opportunity for deeply rewarding changes in the important relationships in their lives.

Why substituting "behavioral" health care for "mental" health care is wrong

A colleague of mine recently pointed out a study by the Center for Health Care Strategies (CHCS) about mental health care for children. Among their findings was this

• Almost 50 percent of children enrolled in Medicaid who are prescribed psychotropic medications receive no identifiable behavioral health treatment.

This is a disturbing, though not surprising, statistic given that these medications are commonly prescribed by primary care clinicians. Children living in poverty often experience greater environmental stress and may have greater mental health care needs, and the study points to medicaid as a possible source for improved, and presumably preventive, care.

Children with significant behavioral health needs typically require an array of services to support their physical, intellectual, and emotional well-being. These children, however, are often served through fragmented systems, leading to inefficient care, costly utilization, and poor health outcomes. As a significant source of funding for children’s behavioral health care, Medicaid programs can advance fundamental improvements in care coordination and delivery for these vulnerable children.

This would certainly be a goal to work towards.

However, in reading about this study I was distracted by, and am struggling with as I write, the repeated reference to "behavioral health care" rather than "mental health care." This change in language is now common in our culture. It is significant and worrisome for two reasons.

First, it serves to perpetuate the stigma of mental illness. Implied in this word substitution is the idea that mental illness is something that should not be talked about.

Recently I came up against this stigma when giving a talk that included a discussion of the connection between "colic" and perinatal emotional complications such as anxiety and depression. An audience member, a mother of several grown children, spoke of resentment, that was still very much alive over 20 years later, that her friends and colleagues had been concerned about her mental well being when caring for her first very challenging child.

Severe sleep deprivation, feelings of isolation and low self esteem are an almost inevitable consequence of having a very fussy baby. The stigma associated with identifying this constellations of concerns as a "mental health problem" is part of the reason for inadequate identification and treatment of postpartum depression and anxiety.

Research has shown that when untreated, these problems can in turn lead to mental health problems in the developing child. If we could, as the saying goes "call a spade a spade," without having it be associated with blame and shame, there might be more hope for helping for these mothers, and for preventing the development of mental health problems in their children.

The second, and perhaps more worrisome issue related to the substitution of "behavioral" for "mental" is the idea that treatment involves controlling behavior, rather than understanding the meaning of behavior.  The ability to attribute motivations and intentions to behavior is a uniquely human quality. Extensive research, that I describe in my book Keeping Your Child in Mind has shown that children develop a healthy sense of self, the capacity for emotional regulation, flexible thinking, social engagement, and overall mental health, when the people who care for them think about and understand the meaning of their behavior. In contrast, there may be significant disturbances when there is an absence of such curiosity about a child.

This brings us full circle to the problem identified by the above study. By treating these children with psychiatric drugs with no other form of treatment, there is no room for curiosity or understanding. Children living in poverty, especially those in foster care, may have experienced significant early trauma and loss. The consequences of treating the behavior alone, in these and other circumstances can be significant. For example, a recent long-term follow up study of children diagnosed with "ADHD" treated with "behavior management" and medication showed that there was a five times higher risk of suicide, and 3% of adults at follow up were in prison.

The CHCS study calls for "expanding access to appropriate and effective behavioral health care." For it to be appropriate and effective, we need to call it mental health care. It needs first and foremost to allow for time and space for listening, for understanding the meaning of behavior.

Are iPad attachments for bouncy seats and potty seats a violation of infants' rights?

I was contemplating writing a blog post about the movement by the Boston-based advocacy group Campaign for a Commercial Free Childhood urging Fisher-Price to recall the baby bouncy seat with an attachment for insertion of an iPad. When I then received an email from a colleague with a link for another product- a potty seat with an attachment for an iPad- there was no going back. I decided not to include the link to that product so as not to inadvertently be a source of free advertising, but it is easy to find. 

In our technology driven culture, a position maintaining that we need to put on the brakes is a challenging one to take. The force of "progress" is so powerful that one runs the risk of seeming out-of-touch or old fashioned. But in these two products I believe we have come face-to-face with exploitation of children ( and their parents) or what I have described in a previous post as a "prejudice" against children. I would even go so far as to say it is a violation of infants' rights.

In today's society, where parents are often living in a state of high stress, with little support, either practical or emotional, the appeal of these products is very understandable. The allure of the screen is equally, if not more powerful for the infant. So from a marketing perspective, from a moneymaking perspective, it is a recipe for success. 

I became aware of the concept of infants' rights in my role as a board member of the Massachusetts chapter of the World Association of Infant Mental Health. A preliminary version the Declaration of Infants' Rights, a work in progress, reads:

The young child’s capacity to experience, regulate, and express emotions, form close and secure relationships, and explore the environment and learn are fundamental to mental as well as physical and developmental health throughout the life span.

So how do these products violate these rights? Lets start with toilet training. Recently I had the opportunity to write the parent guide for a new children's book, Potty Palooza. I identify the relational nature of toilet training:

Toilet training occurs in relationships. This includes a child’s relationship with his body, as well as his relationship with you. Toilet training will occur under the influence of a child’s inborn desire for mastery in relation to his body. A normal developmental movement toward separation and independence, together with your child’s wish to be like you and to please you, will move the process forward.

I do not know what will happen if you insert a screen between parent and child as part of this process (and sitting on the potty with a book is an entirely different experience.)  It is likely that the draw of the screen will interfere with a child's ability to read his body's natural signals.  The desire for treasured "screen time" will become the motivation for sitting on the potty, replacing his natural motivation to please his parents and to gain mastery over his body in a healthy way.  

Turning to the Ipad in the bouncy seat, the possible effects are more insidious and diffuse. Sitting in the bouncy seat in kitchen watching mom or dad prepare dinner is a time of great learning; a time of significant brain development. This learning occurs both through direct interactions with adults and older siblings, as well as through observation. The iPad interferes with both. As CCFC writes:

The Apptivity Seat is the ultimate electronic baby sitter. Because screens can be mesmerizing and babies are strapped down and “safely" restrained, it encourages parents to leave infants all alone with an iPad. To make matters worse, Fisher-Price is marketing the Apptivity Seat—and claiming it’s educational—for newborns. Parents are encouraged to download “early learning apps” that claim to “introduce baby to letters, numbers and more.” There’s no evidence that babies benefit from screen time and some evidence that it might be harmful. That’s why the American Academy of Pediatrics discourages any screen time for children under two.

Extensive evidence at the interface of neuroscience and developmental psychology shows how the brain is wired in relationships, with the most rapid brain growth occurring in the first three years. Instead of making products that come between parent and infant, our focus needs to be on supporting early caregiver-infant relationships, in the form of such things as parental leave, quality childcare and screening for and treatment of postpartum depression.