What Are We Saying When We Diagnose Autism in Infancy?

Recent research suggests that while intervention is needed, we ought to be carefully considering this question.  A fascinating and important study by Jonathan Green in the January 2015 Lancet beautifully described in an article titled, The Social Network: How Everyday Interactions Shape Autism, shows that autism research is coming out from the shadows of the “refrigerator mother” theory. This theory, first identified by Leo Kanner in 1949 and popularized in subsequent decades by psychoanalyst Bruno Bettelheim, claimed that autism was due to lack of maternal warmth.

While this theory has been widely discredited, it led to a kind of backlash, where autism is understood and researched as a biological disorder that resides exclusively in the child. Many contemporary autism researchers pose the question, "How early can one determine if a child does or does not have autism?" analogous to the way one does or does not have diabetes or food allergies.

However, contemporary research at the interface of developmental psychology, neuroscience and genetics, showing how the brain changes in relationships, flies in the face of this formulation.

Given what we know about the plasticity of the brain, rather than framing the question as “Does he or does he not have autism?” a more appropriate question might be, “How to we, in the face of biological vulnerabilities, hold parents through uncertainty to give a child the best opportunity to grow in to what D.W.Winnicott termed his “true self.” (A question echoed by Stanley Greenspan’s DIR Floortime model)

As Green’s research beautifully demonstrates, holding uncertainty does not translate to “do nothing.” As the article about his study states, “An added benefit is that the treatment is easy for parents to do and doesn’t require a diagnosis.”

While this research is specifically about autism, it has relevance for any parent-infant pair that is struggling to connect. The essence of the intervention is a clinician who has a relationship with a parent, who offers space and time to listen to parent and child together. The following case from my behavioral pediatrics practice offers an example of an intervention similar to what Green offers in his research study.

Mary was convinced that her 3-month-old son, Liam, was autistic. She felt she couldn’t connect with him. Her oldest child, Jack, now 7, carried diagnoses of autism that had not been made until he was 4. Her middle child, Jane, had recently been diagnosed with anxiety. Mary was overwhelmed with fear that Liam would follow a similar path.

Mary told me that Liam was quiet from birth. He hardly even cried in the delivery room. Despite the doctor’s reassurances, Mary wondered from those first moments if there was something “wrong with him.” Then as the weeks went on not only was he quiet, but he seemed to her not to be connected. She would put her face close to his and try to engage him to look at her face and follow. But she was rarely successful. As the weeks went on her efforts intensified while her anxiety escalated.

With a full hour together, we sat on the floor and observed Liam together.

I noticed it right away. My initial attempts to engage him by talking to him and looking in to his face were met by a rather remote expression.  He appeared to be looking past me, perhaps at the lights on the ceiling, but it wasn’t clear. I saw Mary’s rising alarm. Resisting a similar reaction in myself, I said, “Let’s give it time.”

Liam lay on a blanket on the floor, at first continuing his seemingly random scanning of the room. I spoke quietly to him, noticing how he was sticking out his tongue. I imitated his movements and gradually he began to engage. Mary noticed that he seemed to be responding to my mirroring of his expression. Then we observed a remarkable transformation. In the quiet calm of this space, so dramatically different from the normal chaos of his everyday life, he seemed to come out of his shell. It started with a smile, at first seemingly random, but then clearly in response to my smile.

Mary continued to speak with him in a soft voice, but rather than putting her face up close to him, she spoke in a more natural way as part of our conversation. Liam became increasingly animated. Mary and I noticed, with rising joy and relief, that not only was he fixing and following on his mother’s face, but he was cooing in a responsive conversation with her. He kicked his legs and moved his arms in an expression of increasing delight.

Mary is not a “bad mother.” Liam's challenges are not her "fault." She is parent overwhelmed by the stress of caring for three young children and her understandable anxiety about the future of her infant. The space and time to listen gave us opportunity to notice that the intensity of her attempts to engage him were having the opposite effect. 

Relief flooded Mary, but alongside what threatened to be a paralyzing sense of guilt and fear. Had she caused him harm by missing his cues? But I pointed out how easy it had been for us to engage Liam. Clearly Mary had been doing something right. Research(link is external)has shown that even when parents miss these cues in 70% of interactions, as long as these “misses” are recognized and repaired, development moves forward in a healthy way.

When I saw them together a month later, Mary spoke joyfully of the fun the family was having with Liam, who had developed in to an engaged and happy baby. Now, taking a few minutes every day to have some quiet time with Liam, she fell deeper in love with him every day. She marveled at his complexity as a person even at the tender age of three months. This “disruption” led to new levels of love and intimacy between Mary and her son.

If an intervention similar to the one described in Green's study was available to all parent-baby pairs who are struggling, we might find that biological vulnerabilities, rather than leading to a diagnosis of autism, or some other disorder, can be transformed in to adaptive assets.