Diagnosing vs Careful Listening

"A diagnosis tells that there is a reason for that other than that they are bad."

This quote is from a blog post written in criticism of my most recent post about the controversy over the autism diagnosis. The intense and widely varied response to that post has prompted me to further explore this complex and highly emotionally charged issue.

The wish to be recognized and understood by those who love us is an essential human quality. We want to have our experience validated. In my work with parents, my main objective is to listen and validate their experience, with the hope that they will be more free to do the same for their child. For parents whose child is struggling in a variety of ways, a diagnosis may say to them "You are not a bad parent." In this way, I understand that a diagnosis is of value.

Speaking from the child's perspective, there is a similar wish to have his experience validated and understood. When, in that previous post, I describe an occupational therapist "giving words to his experience' I did not mean teaching the child to talk. I meant literally giving words to his experience, as in saying "I know its hard for you when its so loud and other kids are too close to you." This kind of giving voice can go a long way in helping a child make sense of his experience. The aim is to avoid having him feel that there is something "wrong with him."

The same blog post goes on to say:

"Dr. Gold simply does not understand that autism is not a psychiatric disorder."

It took me some time to wrap my mind around this criticism. The autism diagnosis or preschool depression or any other psychiatric diagnoses are in the DSM, the Diagnostic and Statistical Manual of Mental Disorders (italics mine.) In essence, you can't have a diagnosis without having a disorder, because it is by definition a diagnosis of a disorder.

So the question becomes: Can we validate a child's or a parent's experience, recognize that there is nothing "wrong with him," that his experiences are "real", without giving it a label?

Psychotherapists run in to a similar challenge when they work with adults whose primary caregivers had significant depression. These adults have often, over the years, internalized a sense that they are bad, that there is something wrong with them. Helping them to recognize that their caregiver was in some way emotionally unavailable to them can validate their experience. It can be enormously helpful in shaking that crippling sense of being damaged in some way. In this setting, the "diagnosis" may only be relevant for the insurance company, and has no real meaning in terms of helping the person to feel better about himself.

While I don't have an answer to this dilemma, I do, thanks to the responses of my readers, have a clearer sense of what the problem is. We don't listen to each other enough. Careful listening, and with that the ability to understand another perspective, is one of the qualities that makes us human. Cultivating this skill will be good for everyone.

The Autism Label Controversy: A Child's View

Child's voice. " I am very smart and tuned in to everything happening around me. I get overwhelmed when there are a lot of people. I love music, but I hear every sound so intensely that I need to cover my ears. Sometimes I run around in circles to help myself calm down. When grown-ups make me go somewhere that is too loud or confusing, I lie down on the floor and scream. When people get too close I cant' stand it. Sometimes I hit the other kids when this happens and now I can't go to preschool. My parents fight all the time about what to do about my difficult behavior. My little sister is very quiet because she knows to get out of the way when I am having trouble"

Adult's voice. "He has Autism"

Certainly this child and his family need help. An occupational therapist consulting in the school setting would be able to help this child give words to his experience. She could support both the teachers' efforts to understand what environments are challenging and how to manage these challenges. She might even recommend a different school setting that is more compatible. A therapist working with parents and child together would similarly help them as a family to manage this child's unique biological vulnerabilities.

If the proposed changes to the diagnostic criteria for autism in DSM V, the newest version of Diagnostic and Statistical Manual of Mental Disorders, result in children like this not getting the help they need, as a recent article in the New York Times suggests, it will be a terrible loss for these families. It will result in increased costs to society when these unaddressed problems grow into bigger problems in later childhood and adulthood, as they inevitably will.

This fear was expressed by Lori Shery, president of the Asperger Syndrome Education Network, when she was quoted in the article saying “If clinicians say, ‘These kids don’t fit the criteria for an autism spectrum diagnosis,’ they are not going to get the supports and services they need, and they’re going to experience failure."

But the real question is this: Why have we created a health care system where the insurance industry, a for-profit business, is allowed to dictate our children's experience in this way?

The need for a diagnosis is primarily driven by the health insurance industry. Clinicians need to have something to bill for, so that services are "covered.". " As I state in my book Keeping Your Child in Mind," [This] is a dangerous example of the tail wagging the dog."

From the young child's perspective, there is a significant downside to receiving such a label. As my book states:

Parents who receive a label of a major psychiatric diagnosis for their child inevitably go through a period of mourning. The child they had is gone and has been replaced by a child with a “disorder.” As D. W. Winnicott so wisely observed, a child develops a healthy sense of self when the people who care for him recognize the meaning of his behavior, rather than substituting their own adult meaning. Parents often begin to regard behaviors as “symptoms” of the “disorder.” For a very young child whose development is unfolding, his “true self” might be lost in the face of such a frightening label. It is my hope that we can move from an emphasis on diagnosis and labeling to an emphasis on prevention. We need to ask not “what is the disorder?” but rather, “what is the experience of this particular child and family?” and “what can we do to move things in a better direction?”

From a young child's perspective, the diagnosis with a psychiatric disorder reduces the complexity of his experience to a label that by its very nature indicates that there is something "wrong with him."

I had a similar discussion with a child psychiatrist who is advocating for the diagnosis of "preschool depression." Certainly young children can struggle with disturbances of mood, and, as is the case with the above child, these families need help, and early intervention is essential to prevent more significant and deeply entrenched difficulties.

But as is the case with the diagnosis of autism, the diagnosis of depression in a young child reduces the complexity of his experience to a disorder, and clearly locates the problem within the child. Often there is a complex interaction between the child's unique biological vulnerabilities and his environment. Qualities that are problems in early childhood may, with the right help, be transformed into adaptive assets as he grows up.

In a previous post I wrote about a new book, Childism, that calls attention to a kind of prejudice against children that exists in our culture. In a sense this kind of labeling can be seen as a manifestation of that prejudice.

Many parents of children with the diagnosis of autism object to my perspective, describing relief that the things they were struggling with had a name. But what if teachers, friends, grandparents, and clinicians were respectful of their struggles and provided help without having to burden their child with a "disorder?" I suspect that these same parents would prefer the latter scenario.

By focusing the discussion on the question: "what are the diagnostic criteria for autism,", we are failing to see the forest for the trees. The real question is "Why are we as a society willing to give the insurance industry so much control over our children's lives?"

Mothers, Babies, Psychoanalysts, Pediatricians

For many people the word "psychoanalyst" conjures up an image of a man sitting silent behind a patient lying on a couch. In stark contrast to this image, the National Meeting of the American Psychoanalytic Association(APsAA) this past week prominently featured women analysts presenting their work with mothers and infants.

Among the most striking presentations was a pair of videos shown as part of the main research symposium by Nancy Suchman, PhD of the Yale Child Study Center. Substance abusing mothers who had histories of significant emotional trauma received an intervention that specifically aimed to listen to the mother and support her efforts to listen to her child. This is known as "mentalization based therapy." In my book Keeping Your Child in Mind, I show what mentalization, or holding a child's mind in mind, looks like in everyday parenting moments as well as in the clinical setting of a pediatric practice.

In the first video, before treatment, the mother was tense and angry, describing her infant's clingy behavior and night wakings as his attempts to make life difficult for her. After the 6 week intervention, she was calm and thoughtful, wondering about the meaning of her baby's behavior. She recognized how much her baby needed and loved her. In a related study, part of the Minding the Baby program at Yale, children of mothers who were similarly at risk but without the history of substance abuse received this mentalization based treatment. Their children showed fewer behavior problems, and the mothers reported less parenting stress several years after the intervention. Another researcher, Dana Shai, PhD, spoke of how a parent's ability to hold her baby in mind is reflected in her body and the way she physically interacts with her baby. This "embodied mentalization" was clear in the second video, when not only the mother's words and tone of voice were different, but her whole body was relaxed and welcoming. This was "evidence based medicine" at its best -an intervention founded on a solid conceptual framework, used in a high quality research design, demonstrating meaningful and significant improvement in developmental outcome.

When I was being interviewed on the Diane Rehm show about the new AAP guidelines regarding diagnosis of ADHD in children under age six, one of the other participants, a professor of pediatrics who clearly supported the new guidelines, identified behavior modification followed by medication as an evidence based intervention. I responded that there were in fact other quality interventions, citing the Minding the Baby program as an evidence based practice. As they had not heard of it, and didn't have any idea what I was talking about, I'm afraid my comment got lost. Here is the actual exchange.

GOLD
I want to just address this issue of behavior therapy because, again, when you start with the much younger children when they're two or three, there are a number of very well-established interventions, such as the Minding the Baby program at Yale, Circle of Security, Promoting First Relationships, that work with parents and children together to promote the ability to self regulate, which is really what ADHD is a problem of, self regulation.

So there are other forms of intervention besides behavior therapy. And, again, that kind of undermines the parents' natural authority if you give them training. But there aren't that many services. The problem is if the AAP kind of endorses medication in very young children, it will decrease the motivation to improve access to other interventions. And that's my biggest worry in very young children.

REHM
What do you think, Dr. Ostrander?

OSTRANDER
Well, I think that, you know, by far measure, the behavioral therapies tend to be the ones that has the greatest empirical support. Now, I'm not to say -- that's not to say that there are not other interventions that are not effective. But, you know, if -- what you -- it seems to me, the most prudent course is to take the medications that have the greatest demonstrated efficacy and try those first.

In another APsAA program, two psychoanalysts from the Parent-Infant Psychotherapy Program at Columbia University, Talia Hatzor and Christine Anzieu-Premmereur, described beautiful individual work with mother-baby pairs. The settings included both private practice and an early head start program, with mothers dealing with poverty and their own abuse histories. The presenters bemoaned the fact that pediatricians do not refer to them. We talked about the gap between primary care clinicians, who are seeing mothers and young infants, and the wealth of knowledge coming out of the discipline of psychoanalysis.

I have been writing about the new AAP policy statement on Early Childhood Adversity and Toxic Stress which emphasizes the need for pediatricians to intervene early to support parent-infant relationships. As I have said, the policy statement is lacking in specifics what such intervention actually looks like. After being at this meeting, it is my wish (fantasy) that there be a combined meeting of pediatricians and psychoanalysts to share experiences and ideas. I would also include health care policy makers, for to do this important work clinicians need freedom from the current restrictive environment imposed by the health insurance industry. The pediatricians (as well as other primary care clinicians) are in the right place at the right time. The psychoanalysts have a great deal to teach us about how to make use of this privileged position.

Is Our Society Prejudiced Against Children?

Tears ran down Elena’s cheeks as she described being so overwhelmed and full of rage that she forcefully held her fully clothed 4-year-old son, James, under the shower when he wouldn’t go to bed. Later in the same 50-minute visit she revealed that she had suffered years of physical and emotional abuse as a child. As is typical of visits to my behavioral pediatrics practice, she had brought James because he was “defiant.” “Something must be wrong with him,” was followed by, “Tell me what to do to make him listen.” James’ preschool teachers, who were having trouble managing his behavior, had suggested that he might have attention deficit hyperactivity disorder (ADHD.) They recommended to Elena that medication be considered. They knew nothing of this history. My wish in listening to this story is not to judge, but rather to understand the experience of both mother and child.

A great tragedy of 2011 was the sudden death of Elizabeth Young-Bruehl a month before the publication of her book, Childism: Confronting Prejudice Against Children, released January 10th. Not only was this the loss of a great mind, but also the opportunity for her to represent her very important ideas, ones that are likely to cause some controversy, in public discussion.

Young-Breuhl, an analyst, political theorist and biographer, calls attention to the way human rights of children are threatened. Childism is defined as “a prejudice against children on the ground of a belief that they are property and can (or even should) be controlled, enslaved, or removed to serve adult needs.”

Elena’s story offers a microscopic view of the macroscopic phenomenon Young-Breuhl so brilliantly articulates. Following the history of the field of Child Abuse and Neglect (CAN) studies, she finds that “from the start [this field] took attention away from abusers and their motivations; and it implied that children could be helped without their abusers being helped.” Furthermore, she describes Child Protective Services (CPS) as a “rescue service-a child saving service-not a family service supporting child development generally and helping parents…” Rather than setting up a system of treatment, CPS became "an investigative service...a situation in which bad families suspected of making their children bad will be invaded and infiltrated." Young- Breuhl has empathy for both parent and child, arguing that failure to support families is a manifestation of childism.

While Young-Breuhl does not write about ADHD, such as James is believed by his teachers to have, she writes of “a childism of the sort that is now fueling an epidemic of diagnoses of bipolar II disorder and the prescription of medications to children who are, in effect, being doped into acquiescence.”

I wonder if Young-Breuhl would have considered the new American Academy of Pediatrics (AAP) guidelines recommending the diagnosis of ADHD in children under age 6 (in contrast to the previous guidelines that covered age 6-12) to be a manifestation of childism.

According to the new AAP guidelines, if a child in this age group meets diagnostic criteria for ADHD, he is first treated with “behavior management techniques” and if these fail, medication is prescribed. The guidelines do not offer opportunity to explore the meaning, or motivations, of behavior, which is often due to a combination of biological vulnerability and environmental stress. One could argue that inherent in this approach is the phenomenon of childism; the idea that children are property of adults, who have the right to control them for their own self-interest.

Rather than blaming individual parents, my aim, as Young-Breuhl does, is to call attention to the way we as a society approach problems involving children and families. For childism is a societal phenomenon. Most individual parents, given the opportunity to be heard and supported, are not childist. They long to help their children, not merely control them.

Elena, once she had the chance to tell her story, was eager to address her own trauma. She wanted to learn to regulate her emotions and help her son to manage his. She did not want to medicate away his symptoms. But getting such help is not easy. There is a severe shortage of quality mental health care services. Pediatricians are under enormous time pressures in the current system of health care, in which a practice must accommodate demands of multiple different insurance carriers. Visits are on average 10 minutes in length, not offering a chance for a clinician to listen to a story like Elena’s.

The problem of improving access to care is a political one. Young-Breuhl describes an attempt in 1970 to pass the Comprehensive Child Development Act. Its creators were accused of being “anti-family.” Young-Breuhl writes, “To this kind of childism, in which trying to ensure that parents were responsive to their children’s developmental needs was seen as anti-family, the framers and supporters of the act could not reply, “this is childism.” They lacked the concept of childism to address the root of the controversy and so remained on the defensive, trying to win a “disinformation” propaganda war. A futile project.” Current efforts to provide services for young children and families similarly come up against “family values” propaganda.

Young-Bruehl compares the situation in our country with that of comparably developed countries that have lower rates of child abuse and neglect. There, “children have a range of preventative and development-oriented services: universal health care, health services, and parent support services in homes after the birth of a child; maternal and parental leaves for infant care; developmental preschool programs; after-school programs; and economic supports of various kinds.”

Young-Breuhl wisely recognizes that “children whose development is not being supported cannot be protected.” She proposes a new Comprehensive Child Development Act. I think she would be heartened by the recent policy statement of the AAP: Early Childhood Adversity, Toxic Stress, and the Role of the Pediatrician: Translating Developmental Science into Lifelong Health. This policy statement seeks to use the explosion of research at the interface of neuroscience, genetics and developmental psychology to support early parent-child relationships. It is a preventive model designed to promote healthy development.

Access to care is a significant obstacle to implementation. I believe Young- Bruehl would say that childism is the reason why pediatric primary care clinicians and mental health care workers are among the lowest paid professionals. She would point to childism to explain why the health insurance industry and pharmaceutical industry have together been able to create a system where children are more likely to be medicated than listened to. She would say that medicating James (or even using "behavior management") without addressing either his mother's history of abuse or his experience of her out-of-control behavior would be a manifestation of childism.

Atthe time of her death, Young-Breuhl was in the process of editing the complete works of D.W.Winnicott, pediatrician turned psychoanalyst. His notion of the need to recognize a child's "true self" to facilitate healthy development fits seamlessly with her ideas.

Pediatrician T. Berry Brazelton, whose work is featured as an antidote to childism, endorses the book, recommending that all who are involved with children and families should read it. This book has helped me, like nothing else I've read, to understand why it is so hard to get the kind of help for children that all the best science of our time is telling us they need. I hope everyone reads it. As Young-Breuhl states, “prejudice has to be recognized in order to be overcome.”

Yoga as Treatment for Colic?

Just to clarify, I mean yoga for mom, not baby. In my book, Keeping Your Child in Mind, I tell a story of a mom who was struggling with both postpartum depression and a "colicky" baby. After one visit with me, she decided to take a yoga class rather than see a therapist. At a follow-up visit a couple of weeks later, their relationship seemed totally transformed. The baby smiled at her as she joyfully told me that she felt like he "had just been born." I attributed much of the transformation to having a chance to be heard both by me and by her husband. I wonder if, in fact, the yoga had an important role to play. I've been thinking about recommending yoga as part of treatment both for colic and postpartum depression, two problems which often go together.

Recently I had the pleasure of meeting Suzanne Zeedyk, a developmental psychologist in Scotland who is kind of my counterpart in the UK. She is trying to address a large audience regarding the implications of the explosion of research and knowledge at the interface of neuroscience and developmental psychology. She's had quite a bit of success-of course its different because Scotland is a small place that has socialized medicine. The departments of education, health care and finance all seem to be listening to her. She has even gotten the cooperation of law enforcement in understanding the connection between violence prevention and supporting early-parent child relationships. In a piece from an early education blog : Early Years the Key to Reducing Violence, a detective talks about how the "Violence Reduction Unit" is supporting early years initiatives and work with parents.

So what does this have to do with yoga? Earlier this week Suzanne sent me a link to a post she had written about the importance of emotional regulation for stressed parents. She asks the question: "Is there a child protection agency out there that includes yoga as a mandatory element of their parenting programmes?" She describes the multiple demands on mothers whose children are in foster care, mothers who themselves often have a history of trauma, with nothing being offered to support their efforts at emotional regulation. But, she wisely points out, emotional regulation is perhaps the most important and most difficult task for a mother. It is through self-regulation that a parent teaches this essential skill to a child. She says:

In other words, children’s brains and bodies can only learn what self-comfort and containment feel like when they have first experienced comfort and containment in the arms of a trusted adult. If the brain does not have the opportunity to know this state, then it will not build the synaptic connections that are able to easily facilitate emotional regulation, later on in life. If a child does not have such neural pathways in place within the first few years of his/her life, then the battle to gain control of intense feelings may forever be a losing one.

A child and mother in the child protective services system is an extreme example. But when a baby has colic, or a mother is depressed, or both, this task of emotional regulation, of staying calm in the face of your child's distress, is very challenging. Perhaps yoga should also be a routine intervention in this situation.

By coincidence, I had just come back from a yoga class when I read her post. My teacher, who is now pregnant herself with her second child, teaches a yoga class for pregnant moms (this is also a great idea, especially given what we are learning about the effects of stress during pregnancy on fetal development.) She then offers these moms the chance to come to her class after the baby is born. So while doing my down-dogs I listened to a cooing baby, who looked to be about 3 months old. He happily kicked his legs while he intently watched his mother. Interestingly, whenever her head was down ( they were right in front of me so I could easily observe, and as those who read my blog know, I am a professional baby observer!)) his cooing reached a crescendo. Then when she looked up and smiled at him he became quiet and gleefully smiled back- a great example of a young infant's terrific communication skills!!

Of course yoga is not for everyone, and yoga classes are extraordinarily variable. The point is that moms, particularly under the stress of colic and/or postpartum depression, need help with their own emotional regulation. Using the body to help the brain, through yoga, martial arts, swimming or even simply walking can be an important intervention that is good for the whole family!