Dilemmas in Diagnosis: Is it Autism, Anxiety, or Neither?
The need for a label may limit our search for understanding and healing
Posted Aug 30, 2015
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.
Colotat, 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 6 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 members of her family. 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 to be heard and understood. Our current system of DSM diagnosis, without protected 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.