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.