About 2 years ago, when the change in diagnostic criteria for Autism Spectrum Disorder proposed for DSM 5 was in the news, I wrote a blog post about the problem of giving children a diagnostic label in order to "get services covered" by insurance. An irate reader, himself a well know speaker and advocate for people with Autism and Asperger's, wrote a blog post in response, in which he said, "Dr.Gold simply does not understand that Autism is not a psychiatric disorder."
In the wake of the recent CDC statistics indicating that 1 in 68 children has autism, and the designation of April as autism awareness month, I have been thinking about this dilemma a great deal. For this young man and I were really exactly on the same page. Both of us were calling for a respect for and value of uniqueness and differentness.
This perspective was again beautifully articulated in a TED talk by Andrew Solomon, author of Far From the Tree. In an in-depth discussion of a range of entities including homosexuality, deafness, as well as autism, Solomon identifies the power of unconditional love in the context of complete acceptance of individual differences.
While I fundamentally agree with the perspective of these two men, my mind stumbles on these facts. The DSM 5 is the fifth version of the Diagnostic and Statistical Manual of Mental Disorders. The CDC is the Center for Disease Control. So much as we may want to think of autism as a celebration of individual differences, the prevailing view is that it is a disorder.
Solomon suggests that by hoping a child does not have autism, a parent is saying that she wishes this child did not exist and that she had a different child. I see the exact opposite. The parents I see who are in this position unconditionally love their child for who he is. They are motivated to make sense of his experience and give him space to grow in to himself.
While there is emerging evidence of the role genetic and neurobiological mechanisms in the behaviors collectively referred to as autism, it is not a know biological entity in the way, for example, diabetes is.
One little girl I worked with ran around in circles at preschool and repeated letters in nonsensical patterns. There was a strong family history of both anxiety and "quirky" behavior. She was easily overwhelmed by a range of sensory inputs. Her mother would herself become overwhelmed in the face of her child's struggles as she recalled her own difficult childhood. Another little boy endlessly repeated whole scenes of dialogue from Disney movies. He ate only 3 different foods for the first 7 years of his life. His parents fought frequently about his challenging behavior, which usually caused it to escalate.
For both these children the diagnosis of autism was raised. But both sets of parents resisted. When they addressed the child's unique qualities as well as the environmental stresses that contributed to the problematic behavior, dramatic changes occurred. Both are now teenagers. The first is a talented actress, singer and musician. The second is a chef. Both have active and successful social lives. One view is that they "outgrew" autism. Another is that they were they given space and time to grow into themselves.
It the first five years of life there are major changes in the brain, changes that occur in the context of relationships. We are now recognizing that changes occur not only in brain structure, but in genes and gene expression as well. It is a work in progress.
These children and families do benefit significantly from help. This may be in the form of a special preschool placement, occupational therapy, family therapy or other interventions that can set these children on a healthy path of development. In order to get these services, a diagnosis is often necessary. This is an example of the tail wagging the dog.
The massive rise in diagnosis of autism indicates that something is amiss. I wonder if that "something" is that in our fast-paced society we rarely take the time to listen to the story, to let meaning unfold. There is a need for an "answer." There is a lack of tolerance for uncertainty.
When a child is young, when his "true self" is emerging, supporting parents efforts to "hang in there" without the need to name, to label, to diagnose, may give these young children the best opportunity to transform what in early childhood may be challenges and vulnerabilities in to adaptive assets and strengths.