Autism, Anxiety, or Neither: A Tale of Two Boys

The subject of autism is so highly fraught, a well-respected child development researcher told me,  that she might need to be the only one in her field to never address the issue. A recent study showing that the likelihood of a child receiving a diagnosis depends on the center conducting the evaluation highlights the complexity of the problem.  For his PhD thesis, Phech Colatat at MIT Sloan School of Business Management reviewed records from three clinics established specifically for autism spectrum diagnosis.   At two centers the rate was around 35% while at a third the rate was 65%. The MIT news release about the study states: 

Those rates persisted over time, even when Colatat filtered for race, environmental factors, and parents’ education. 

But then comes what may be the most interesting finding: 

"...when doctors moved from one clinic to another, their rates of diagnosis immediately changed to match that of the clinic as a whole."

Colatat, based on extensive interviews and observations within the clinics, develops a theory for this phenomenon: imprinting. The article continues:

He conducted dozens of interviews with the clinicians to get a sense of how they had learned to diagnose autism. What he heard was the same few names again and again. At one clinic, a consultant from a nearby university had served as an intellectual mentor to the staff. She had impressed upon them how subtle the signs of autism can be, and as a result, they tended to give out the diagnosis more readily. At another, the clinic’s first director instilled the belief that autism can look like a lot of other conditions, which caused staff to be more conservative. These charismatic individuals made an impression that lasted.

Most striking about this study is the subjective nature of the diagnostic process. Once the purpose of the evaluation is to answer the question, "Does he or does he not have autism?" the possibility of exploration of the complexity of a child's experience is already limited. 

Referring to a recent trend to reframe the symptoms of autism as anxiety disorder, one pediatrician colleague described a kind of "aha" moment, saying excitedly, "Now I see that many of those kids diagnosed with autism really have anxiety disorder!" But both diagnostic labels may be similarly limiting. 

For both Charlie and Max, family outings often dissolved into screaming meltdowns. Both developed rituals of lining up toys, and could recite whole segments of Disney movie dialogue as they insisted on seeing the same film over and over again. Getting wet in a lake, hearing fireworks at a fair, being in a crowd, even of close family members, precipitated scenes of disaster. Teachers at their preschool had raised the question of autism.

Charlie's mother, Elena, had struggled her whole life with anxiety. His father Peter came from a family where discipline was strict, often shaming. He became overwhelmed with rage both at his wife, whom he blamed for his sensitive son's behavior, and at Charlie. Elena felt she had to protect Charlie from his father. Peter clearly favored Charlie's older brother, who he described as "laid back" and "easygoing." This tense family dynamic persisted for years as Charlie's challenging behaviors steadily escalated. Finally at the age of 8 he was referred to a center for autism and received a diagnosis. He entered the special education system as his behavior problems worsened.

Max's family took another route. They got a lot of support for themselves, from family members and from his mother Angela's own therapist, to make sense of Max's "quirks." They worked hard to help him manage what he experienced as onslaught of sensory stimulation. Angela, too, struggled with anxiety and sensory sensitivities, as did multiple family members. But her husband Mark, unlike Peter, came from a warm and loving family. Max's parents found a balance of limit setting and accommodation to his unique qualities. He discovered a love for both drumming and dance and excelled in both. By the time he was in high school, while his quirky behavior persisted, he recognized his challenges and found ways to manage them. He had a number of close friends and excelled academically. 

The need to find something "wrong" with a child may preclude meaningful help. Both these boys, and their families, needed time and space to be heard and understood. Our current system of DSM diagnosis, without this protected space time and space to listen, may bypass this search for understanding.

At the end of the article on Colotat’s research, the author raises the question of how we “get at the truth.” The term"autism" covers such a wide range of experience as to include both adults who advocate for themselves and individuals who cannot communicate at all. There is no “truth” for the diagnosis of autism, or for that matter any other DSM based  "mental disorder," all of which are based on subjective assessment of behavior or "symptoms."

The truth lies in our humanity, in the complex interplay between biology and environment. It lies in the stories we tell and the meaning we make of our experience. The search for the truth lies in protecting space and time to listen to those stories, in all their richness and complexity.

Is Listening a Science or an Art?

According to pediatrician turned psychoanalyst D.W. Winnicott, the "true self" in its original form develops when the mother meets the infant's "spontaneous gesture." She sees the baby as himself, without projecting her own expectations, fears, or needs. But as Winnicott identified, the mother is not perfect. Inevitably she fails in this process. Sometimes the failures are small; disruptions can easily be repaired. The true self continues to take shape and grow.  But more significant disruptions may occur.  Postpartum depression, a highly dysregulated baby, her own unresolved conflicts and losses, among other things, may obstruct a mother's view to her child's true self. That child may become an adult in search of his true self.

Winnicott understood this search on a profound level. He saw it in its original form in his work as a pediatrician with mothers and their babies. Then he saw it again, when his adult patients in analysis "regressed to dependence." They used him to discover, or re-discover, their own true self. Winnicott was able to support this process with his full presence, using the predictable space and time of the therapy session to provide a "holding environment" analogous to that offered by the mother in infancy. 

Psychoanalysis is sometimes described as the "talking cure." One might more accurately call it the "listening cure." In infancy the mother reflects the baby's experience, holds him with her body, her words, the sound of her voice. She helps him to give words to his feelings. When our emotions get the better of us, we have lost this ability to give words to feelings. When a therapist listens to our words, mirroring our experience in a way that echoes that original experience of being seen and understood, we can discover, or re-discover, that true self, that either never fully formed or got lost along the way. 

At the recent International Psychoanalytic Association Congress in Boston, a speaker at a panel on Winnicott (whose collected works will be published by Oxford University Press in 2016) addressed Winnicott's use of language. At the time he was developing his unique contributions to our understanding of human experience, adherence to Freud's original discoveries was considered paramount. Freud had developed his own language to describe his discoveries, and in part in an effort to make the field "scientific" there was pressure to use that same language. But Winnicott resisted. 

Using his own words was integral to his theories. By using his own language to describe his highly personal experience, he stayed true to himself. Thus it is the very lack of adherence to Freud's language that gives power to his ideas. But as Professor Scarfone articulated at this presentation, the ideas themselves are perhaps most true to Freud's discoveries. 

 We take its existence so much for granted, that we may forget that Freud's greatest original discovery was the unconscious. The unconscious is that part of the mind made up of feelings, thoughts, and memories that are out of our awareness but exert influence on our conscious thoughts and behaviors. The "talking cure" or "listening cure" connects those thoughts and feelings, which may maintain a grip on us in unhealthy and maladaptive ways, to conscious thoughts and words. When a therapist listens to a patient, she to performs a kind of mirroring function.  She parallels that original experience of connecting thoughts and feelings with words, when the mother recognizes the infant's true self. She offers the patient space and time to say what he means, to connect words with feelings, and so make the unconscious conscious.  In other words, she gives the patient the space and time to discover his true self.  

In the current age of "evidence-based" medicine, I question the necessity of scientific evidence of the healing power of listening.  For Winnicott, the search for the true self precludes a common language; thus it is in a sense by definition unscientific. Attempts to design controlled studies inevitably call for a common language, and for a reduction of human experience to quantifiable measures. When I offer space and time to listen parents whose children are struggling with a range of "behavior problems, I always hear a story that gives meaning to the behavior.  The stories themselves are the evidence. 

When I read Winnicott, I have the calming, centering experience of recognition and understanding. I feel that if he were here today he would "get" what I find troubling about this age of "evidence-based" medicine. Listening to parents and children,  facilitating development of a child's true self, is by definition unscientific. It is creative and original. Creativity emerges in the "play space" of the therapy setting. Telling of the story is itself a creative act. As Winnicott writes in Playing and Reality:

It is in playing and only in playing that the individual child or adult is able to be creative and to use the whole personality, and it is only in being creative that the individual discovers the self. 

In conclusion, I playfully offer an articulation of the connection between language and the true self from another creative thinker, Dr. Seuss:

          I meant what I said and I said what I meant
         An elephant's faithful one-hundred percent                          

                                                Dr Seuss, Horton Hatches the Egg