Rethinking the Meaning and Use of the Word "Autism"

In the course of working on my new book about listening to parents and children, I have had the pleasure of immersing myself in the writing of D.W.Winnicott, pediatrician turned psychoanalyst.  Winnicott's professional life included both caring for countless young children and families as a pediatrician, and psychoanalytic practice, where his adult patients "regressed to dependence," giving him an opportunity to interact with their infantile qualities, but with adult capacities for communication. This combination of experiences gave him a unique vantage point from which to make his many brilliant observations about children and the nature of the parent-child relationship.

A recent New York Times Magazine article on autism prompted me to share his words of wisdom on the subject, which, though written in 1966, still have relevance today.  The following is from a collection of papers, Thinking About Children:

From my point of view the invention of the term autism was a mixed blessing...I would like to say that once this term has been invented and applied, the stage was set for something which is slightly false, i.e. the discovery of a disease…Pediatricians and physically minded doctors as a whole like to think in terms of diseases which gives a tidy look to the textbooks…The unfortunate thing is that in matters psychological things are not like that. 

Winnicott implores the reader to instead understand the child in relational and developmental context. He writes:

The subject quickly becomes one not of autism and not of the early roots of a disorder that might develop in to autism, but rather one of the whole story of human emotional development and the relationship of the maturational process in the individual child to the environmental provision which may or may not in any one particular case facilitate the maturational process.

In my behavioral pediatrics practice, parents of a young child may wish for a diagnosis to relieve them of the feeling that they are "bad parents;" that their child's challenging behavior is their "fault." Yet when I give parents space and time to make sense of their child's behavior, and in doing so help him learn to manage his unique vulnerabilities- essentially doing what Winnicott suggests-I find that most parents prefer not to have their child diagnosed with a disorder.

A recent book on the subject, Autism Spectrum Disorder: Perspectives From Psychoanalysis and Neuroscience, while still referring to a "disorder," captures the tenor of Winnicott's approach. My blurb on the book's cover reads:

This book, with its central focus on the parent-child relationship, offers a unique and very important contribution. Parents struggle terribly in their efforts to make sense of the behavior of a child with a wide range of neuro-developmental challenges that currently fall under the heading of Autism Spectrum Disorders. Drawing on extensive evidence from the fields of genetics and neuroscience as well as in-depth clinical material, the authors show how a clinician can set these children on healthy developmental paths by supporting parents’ efforts to find meaning in their children’s behavior.

Many adults with autism now advocate for the idea that autism is not a disorder. But they come from a very different perspective, arguing that their unique way of interacting with the world is simply different, not abnormal. Certainly for an adult this is a valid perspective. However, when I work with parents and young children where the diagnosis is being entertained, the whole family is struggling terribly. It feels to me a great disservice to a young child to think of calling this situation "normal." 

An approach like that of Winnicott, Sherkow and Harrison may be fraught in the context of the history of "refrigerator mothers." While this theory has been widely discounted, any attempt to consider the child's relational and developmental context may be interpreted as "blaming the parent." That is why I love Winnnicott's approach. Rather than asking, "Is it or is it not autism?" we might be wise to discard the term completely.  Instead, if we offer space and time to learn, "the whole story of human emotional development," the very act of listening to the story becomes the cornerstone of treatment. 

Towards a new (or return to an old) paradigm of finding meaning

I am fortunate that my father is my greatest fan, although, perhaps because his original language was German, it has taken me years of patient listening and translation to recognize this fact. Recently, after receiving a biography of Charles Darwin for his 89th birthday, he has taken to comparing me to Darwin.

 I would certainly be more modest, recognizing that the ideas I write about draw on the work of great thinkers and researchers, together with my own clinical experience.   One of these great minds is Sigmund Freud. His discovery of the unconscious, his greatest contribution, is so much a part of the way we think and behave that is difficult to appreciate the revolutionary nature of this idea.  Even before he used the term unconscious, in his work as a neurologist, his original discovery was that symptoms have meaning.

Freud did not write very much about development under age three, perhaps because there was only so much he could do. However we do know that when he was a toddler his younger brother died. I wonder how much this early experience, and his mother's concurrent grief over the loss of her child, influenced the development of Freud's theories, though perhaps in a way that he himself was not conscious of.

Fortunately the next wave of researchers, including such great minds as John Bowlby, Peter Fonagy and Ed Tronick, and many others in the growing discipline of infant mental health, have focused on early development, showing that not only does behavior have meaning, but also how that meaning is co-created in relationships.

Here is an example. I have written on this blog about my growing recognition of the significance of sensory processing challenges in development.  While such a trait may originate in the child, it immediately takes on meaning within relationships. A newborn that is not cuddly and does not like to be held may evoke feelings of shame and even depression in a mother. A father who himself had sensory processing challenges but was physically abused because of his difficulties may be overwhelmed with anxiety in the face of his child's similar problems. The child's behavior takes on meaning in the context of the parent-child relationship. When a child is a newborn, it may be relatively easy to identify the relational nature of these problems. But when a child is older, there are layers of complexities, such as learning difficulties and concurrent self esteem issues that may accompany sensory processing challenges, or marital conflict that may occur in the face of a child who is struggling.  These complexities are usually out of a parent's awareness, or, returning to Freud's term, unconscious.

 As a society we have come far from this idea of looking for the meaning of behavior. Instead we treat only the symptom. Thus a child who has sensory processing challenges, unless he is working with an occupational therapist trained in infant mental health, may be treated by brushing, or listening to tapes designed to "re-program" his brain. Many parents have told me that they are actively discouraged from participating in the therapy. Yet if parent and child are separated in this way, the meaning of a symptom within the context of relationships is never discovered.

In mental health care, this shift away from the search for meaning is due at least in part to the birth of "biological psychiatry" and the hope that complex emotional struggles have a simple chemical explanation that can be solved with a drug.

On the list serve of the American Psychoanalytic Association there is currently an active discussion about the issue of CPT codes. In order for a service to be covered by insurance, a clinician must provide both a diagnostic code and a code for the type of service. An underlying problem is that our system of diagnosis, largely based on the DSM (Diagnostic and Statistical Manual)  is organized by symptoms, not by meaning. Clinicians who are used to helping people to discover meaning are restricted by a system that reduces these complex meanings to a number that corresponds to a list of behaviors. It is a deeply entrenched issue related to the whole structure of the health insurance industry and of our health care system. It is further complicated by the rise of electronic medical records and concurrent implications for confidentiality. Helping people to discover meaning that may be unconscious often involves intimate and private conversations.

This brings me full circle to my father's flattering comparison. It is indeed true that I am motivated not only to help the individual children and families I work with, but also to promote a paradigm shift in how we as a society understand human development, and, in turn, support newborns, young children and families.

Though my father is a magazine publisher, he is not a big fan of social media. He told me that Darwin kept his discoveries to himself, partly in fear of upsetting the mainstream thinking, until he had it all written down in the Origin of Species. My father suggested that I concentrate my efforts on producing my own analogous work.

He has a point. However, I choose to embrace the age of social media, and so aim to move our thinking one blog post at a time (although another book will also be forthcoming.)