Is Disorder Healthy? Rethinking the Language of Mental Illness

In the program notes of a recent concert at my son's university, the choral director wrote: "while the music in this concert is mainly secular in nature, each piece contains imagery which tells the story of our collective movement through the life cycles of order, disorder, and re-order." 

The phrase brought to mind the groundbreaking research of developmental psychologist Ed Tronick, who in his moment-to-moment analysis of videotapes of our earliest love relationships, offers evidence for the critical role of moving through mismatch to repair in healthy development. Tronick’s research, founded in dynamic systems theory, shows us how disorder followed by re-order is in fact the process by which we gain energy and grow. 

If disorder, and the process of moving through disorder to re-order is a not only healthy, but an essential part of human development, perhaps it calls for a rethinking of what we now name mental "illness"

A recent controversy on Twitter exemplified the emotionally charged nature of this conversation. My colleague Suzanne Zeedyk referenced my blog post Big Pharma and the Question: Is ADHD Real? Below is an excerpt that speaks directly to this question.

The latest research by Peter Fonagy, psychoanalyst and director of the Anna Freud Centre in London, leads us to focus not on “what is the disorder” but rather “what makes us well?” In a brilliantly laid out argument, Fonagy and colleagues present the concept of a “p” factor that is common to all forms of mental suffering now categorized under the structure of mental health “disorders.”

An irate twitter follower responded with this provocative comment, "ADHD is not a mental illness, Suzanne. What a horrific insult." Suzanne responded with a comment that in my view is right on the mark. "There is no shame in any life struggle, whatever you call it. All struggles are real."

She makes an essential point, that may account for the intensity of reaction to any questioning of our current paradigm of mental illness. Questioning of the language may be heard as a denial of an individual's experience of suffering. Can we recognize that the suffering is real, without calling it an "illness" or a "disease?" 

How is her twitter follower right? When we recognize that from the moment we are born, our behavior and emotions are a vehicle for communication and for making sense of our experience, we can understand behaviors associated with ADHD not as an illness, but as a form of communication.

As I describe in my book The Silenced Child, the problem comes when rather than listening to the meaning of that communication, we instead silence the communication either with behavior "management" or medication.

For if behaviors serve an adaptive function, are actually a way of coping or holding ourselves together, eliminating the symptoms might be a short-term solution. While medication can have a role to play in relief of profound emotional suffering, if we fail to offer ample time and space to listen for the meaning of behavior, we should not be surprised if "symptoms" reappear in different and sometimes more problematic forms.

“But its genetic” or “these are brain diseases,” are frequent response to this reframing of our concepts of mental wellness and illness. Once we recognize that our genes, brains, and bodies develop in relationships, the false duality of biology and experience, of nature and nurture collapses.  Expression of our genes and wiring of our brains occurs in the interactive process of mismatch and repair in our closest relationships starting from birth. It used to be thought that brain wiring was pre-determined; that our brains had a fixed wiring plan. But now we know this is not true. Formation of new neural connections- the “wires” that make up the brain- is flexible not only in early development, but throughout our lifespan.  

If we understand "disorder" as "normal" we need to re-think our system of mental health care that now equates "disorder" with "illness." Fonagy points us in the direction of a solution when he writes:

“In that sense, many forms of mental disorder might be considered manifestations of failings in social communication.”

 When we move through the experience of disconnection to moments of connection and healing, we grow and change. Relief of emotional suffering lies not in naming and eliminating problematic behavior, but in creating ample opportunity for a mosaic of social connection, with all its inherent messiness and disorder.

Mr. Rogers, Trauma-Informed Care, and the Limits of Information

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Fred Rogers, in his 1969 testimony before the Senate subcommittee on communications in defense of public television, transforms a clearly skeptical Senator Pastore from, "Alright Rogers you've got the floor" to, "Looks like you just earned the 20 million dollars."

How does he accomplish this transformation? One line from Senator Pastore gives us some insight. Several minutes into Mr. Rogers testimony he says, "This is the first time I've had goosebumps in the last two days," to which Rogers graciously responds, "I'm grateful, not only for your goosebumps, but for your interest in our kind of communication."

What are goosebumps in this context? They represent a form of activation not in the higher cortical or "thinking" centers of the brain but in the lower limbic, or "feeling" centers of the brain. The raising of the hairs on his body reflect Senator Pastore literally feeling his response to Mr. Rogers words. 

Rogers opens by saying that rather than read his statement, he prefers to just talk. He tells Senator Pastore, "I trust you" [to read it.] For the next 5 minutes he describes how his television program helps young children to name and manage their big feelings. The significance of the interaction lies as much in his direct gaze, his gentle tone, and the lilting rhythm, or prosody, of his voice as in the content of the words themselves.

I raised this story, that is shown in the recent film "Won't You Be My Neighbor" over dinner with Dr. Bruce Perry, child psychiatrist and trauma specialist, who was spending the weekend with an extraordinary group of fellows in the University of Massachusetts Boston Parent-Infant Mental health program, where I am on the faculty. Dr. Perry was among the first to call attention to the significance of the Adverse Childhood Experiences study as evidence that our early experiences exert profound effects on our long-term health, both physical and emotional.

He shared with us that while he is gratified that the study has finally begun to inform current healthcare practices, he cautions against the oversimplified application in the form of universal ACE screening. In a recent tweet he wrote:

We need to keep reminding everyone of the complexities of development and the importance of acknowledging individuals as unique. Relational health is more influential on health outcomes than adversity. ACEs are not actionable (unless ongoing). Relational poverty is..

The story of Mr. Rogers and Senator Pastore demonstrates how we change the way we think and behave when we feel something in the context of a relationship. Simply giving information is usually insufficient to effect change.

We can also view this interaction in the context of the work of Dr.Ed Tronick, world-renowned developmental psychologist and chief faculty of the UMass Boston program. From his decades of research using the Still-Face paradigm, evidence emerged that growth and change happen through the process of mismatch and repair in everyday interactions. 

At the outset, Mr. Rogers and Senator Pastore were clearly mismatched, with wildly different intentions and motivations.  In that "moment of meeting" they moved through mismatch to repair. The result was significant growth- in the form of salvation of what at the time was a new concept of public television. 

Dr. Perry's research has demonstrated that current relational health is the single best predictor of health outcomes.  One of the fellows in the IPMH program described a group process for parents in her clinical work.  They met together several times in a group setting, both before and after filling out their ACE questionnaire. At one of these meetings they focused on identifying positive, healthy relationships in their lives. They create what they term a map of resilience. Perhaps most importantly, the group itself becomes a current positive relational experience.

The ACE study has profound implications for a wide range of settings. But before we rush to implement universal ACE screening in healthcare, we need to recognize the limits of information in effecting change. When we connect in relationships at the level of feelings, not simply words, meaningful change occurs.

Jane’s story offers an example. A new mom, she had experienced intimate partner violence during her pregnancy and had troubled relationships with her own parents, both of whom were alcoholics. I learned this information not in a screening but in conversation with her.

At our first meeting she shared her worry that her baby would be a “stranger.” Haunted by the cultural image of perfect bonding at the moment of birth, she was able to express her fears in the 20 minutes we spent in the hospital getting to know her son Aaron. 

When I saw Aaron with Jane in a visit a few weeks later, tears filled her eyes and her voice cracked as she said, “I can say to him ‘I love you’ and I know I really mean it.”  With opportunity to tell her story in her relationship with me, she moved through mismatch to repair in her relationship with her infant son. Information about her ACE score took a back seat to moments of connection- between Jane and me and between Jane and her son. 

For professionals, the ACE study provides a critical frame to "inform" the way we listen to the story. But this frame does not translate into giving patients information about the effects of trauma on long-term health. Without sufficient relational support, such information might be deeply destabilizing. 

In a previous post I suggest we replace the word "screening" with the word "listening."  Screening is something you give to someone while listening is something you do with someone. As Dr. Perry shows, current relational health buffers against adversity. Offering space and time for the kind of connection we observe between Mr. Rogers and Senator Pastore may be just the "action" that is needed.

Parent-Child Separation as Existential Trauma

The face of a 2-year-old Honduran girl, dwarfed by the adults who only appear as legs in the photo, communicates undeniable anguish. Used to represent the horror of children separated from their parents at the US Mexican border, the photo became a lightning rod for controversy when it turned out that this particular child was not actually separated from her mother. In an interview for CBS News the border patrol officer involved in the incident explained that they asked the mother to put her daughter down so she could be searched. He explained, "It took less than two minutes. As soon as the search was finished, she immediately picked the girl up, and the girl immediately stopped crying."  

The fact that the girl recovered immediately shows that she has had accumulated a reservoir of experience with her mother coming back. Rather than falling apart, she was immediately comforted. The very presence of her mother appears to have given her the skills to manage her distress. In an instant she is OK.

But when separations are beyond a young child’s ability to manage, the capacity to recover in the face of disruption is compromised. Time is of the essence.   With too much time, “stress” is transformed into “trauma.”

Pediatrician turned psychoanalyst D.W. Winnicott captures the role of time in child development in a way that seems particularly poignant in light of current events. In his book Playing and Reality he describes how a young child comes to have a sense of himself in relation to the world around him:

“It is perhaps worth while trying to formulate this in a way that gives the time factor due weight. The feeling of the mother’s existence lasts x minutes. If the mother is away more than x minutes, then the imago fades, and along with this the baby’s capacity to use the symbol of the union ceases. The baby is distressed, but this distress is soon mended because the mother returns in x+y minutes. In x+y minutes the baby has not become altered. But in x+y+z minutes the baby has become traumatized. Trauma implies that the baby has experienced a break in life’s continuity… [his behavior] now becomes organized to defend against a repetition of ‘unthinkable anxiety.’”

When the Honduran girl’s mother picked her up her rapid recovery reflects an experience Winnicott describes with the lovely phrase “going on being.” The countless experiences of the mother coming back, in typical day-to-day interactions, literally builds a child sense of self. The “unthinkable anxiety” he references is the profound unraveling that accompanies a loss of bearings, a loss of sense of self.

While unfortunate that the photograph was misrepresented, in fact it proves a point about the actual separations known to have occurred in large numbers. Young children rely completely on their parents to hold them together. Self-regulation, the ability to manage on one’s own, is a developmental process that occurs over countless moment to moment interactions in co-regulation with primary caregivers. Separation beyond a young child’s ability to manage represents, from a developmental perspective, a fundamental threat to existence.