A father recently asked me if I thought his 3-year-old daughter might have autism based on the story he and his wife told me in our first hourlong consultation. When I asked if he felt comfortable staying with me in the uncertainty while taking time to make sense of their daughter’s behavior and experience, he replied, “As long as you as the expert don’t think she has autism.”
This kind of catch-22 situation is not unfamiliar. While parents welcome the time and space to share their experience and make sense of their child’s behavior, feelings of terror and shame invariably hover in the background of our conversation. The questions “Is there something wrong with my child?” and “Am I a bad parent?” reflect the contradictory wish and fear of placing the problem definitively in one or the other. While offering an illusion of certainty, no simple response can bring the relief parents seek from the struggles that brought them to my office.
Pediatrician and psychoanalyst D.W, Winnicott’s thoughts on the subject of autism, though written in 1966, have relevance today.
“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.”
Once the purpose of the evaluation is to answer the question, “Does she or does she not have autism?” the possibility of exploration of the complexity of a family’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 categories may be similarly limiting. Consider these two stories.
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.
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. Interesting research from MIT revealed dramatically different rates of diagnosis of autism in different clinics, with evidence that clinicians seemed to be influenced by the approach of charismatic mentors who ran the programs.
The author of the study raised 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.”
Emotional well-being and emotional distress both grow out of variations in the repeated moment-to-moment interactions that make each of us who we are. Rather than being fixed, the meanings we make in our earliest relationships are continually changing in new relationships in an ongoing process as we grow and change. 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.