“Red udder”

One Saturday afternoon, my wife Mary and I were on our back deck, talking with friends. Jacob, my son, came out with a pair of children’s safety scissors, a long, hotdog-shaped balloon that we had blown up earlier in the day, and a red scrap of construction paper.

“Red udder,” he said, urgently handing me the items.

He was around 6, had been diagnosed with autism 3 years earlier, and so we had learned a disciplined patience in the face of his sometimes mysterious requests.

“Red udder! Red udder!”

The balloon skidded atop the table. Puzzled by his request, I picked it up and rhythmically thumped it against my forearm to buy time. We all looked at each other, perplexed. Jacob took the red construction paper and held it against an end of the balloon. Knowing that my son thought in pictures more than language, that he felt more comfortable drawing than speaking, I remembered not to think in words. I remained patient, wishing to meet my son’s anxiety with a practiced calm; I did not want to contribute to an escalation of his own frustration. I closed my eyes and tried to imagine the image that “red udder” might be trying to “sketch” for us.

Ruminating on the long tube of the balloon and red slap of paper hanging at its bottom, I glimpsed a picture. It came to me as I imagined the shape of a red cow’s udder hanging beneath the balloon. I saw the tube as a metal cylinder rising toward the sky atop a fiery burst. A rocket. He wanted us to make a rocket ship.

“Rocket ship,” I said, pleased to have the translation to give to my son and relieved to have avoided an afternoon of his fretful, roving efforts to be understood. Jacob took in a deep breath and let his arms rest on Mary’s lap. His leaning was now relaxed, though his eyes still intently watched my cutting.

“‘Rocket,’ say ‘rocket,’ Jacob.” He was not paying attention, of course. “Red udder” had communicated his want.

As I cut and taped, I wondered what chance combination of memories enabled me to translate his words, this image evoked with sparse vowels and consonants. And then my thoughts wandered back to the associations that had flashed in my mind. I realized that what he wanted came to me when I caught an image from a nursery rhyme. During the past week, we had been reading from a book of Mother Goose rhymes, including the one about the cow jumping over the moon. I went down to the basement to get the book. Against the backdrop of a night sky, I saw the illustration of a white cow, udder hanging over the curve of the sliver moon as the blocky body seemed to lift off toward outer space. While it was a seemingly simple connection, though, I despaired over the apparent randomness of this epiphany. Who else could have decoded his want? On any other day, would the right connections have formed in my mind? Would someone else have trusted that it had meaning, that it was a gesture toward connection?

Given the profound impairment in communication that marks autism, the interactions with those on the spectrum can seem a series of mysteries, and thus can escalate into frequent frustrations. In relation to my story, then, I urge consideration of a take-away message that may seem unexpected, for it invites a focus on the mode of interaction rather than any drive to solve a particular message. The aim is not to generate epiphanies, to spend office time seeking for the secret code, or to marvel at the striking way of “knowing” embodied in such visual thinking. Rather, it is to enter into such interactions prepared to listen, to convey patience, to limit verbal input, to reduce sensory distractions, and thus to manage conduct in ways that produce less frequent meltdowns or conflicts.

For those on the spectrum, after all, the world can be an ever-shifting place of unexpected demands, intrusive sensory input, and fraught efforts to communicate. It can be a place where imposing adult figures burden interactions with a rush of words, a series of comments or questions, and, in a doctor’s office, a sequence of pokes, pricks, and probings. Certainly this reality can be true for many children. Yet, given their impaired ability to pick up the comforting eye contact of parents or to understand verbal assurances of strangers, children with autism will experience a doctor’s visit as a worrisome break from the security of recognizable routines and sensory familiarity of the home environment.

As a parent, I valued and came to see the effectiveness of physicians who sought my input into how to interact with my son, accepted with patience the delays that may come with a child who needs more time to process verbal and/or sensory input, and understood that the interaction was not solely a problem to be solved (or a series of procedures to be performed) but an interpersonal dynamic that can build short-term and long-term trust. In reflecting on my son’s words, “Red Udder,” and my response, I realize that a telling moral was that I met him in a way that fostered his willingness to come to me again and again. For parents and pediatricians, the endgame is this truth: that the child will be open to a return, that he or she will seek continued connection across different ways of processing the world.

“Nick’s story”

It can be useful to reframe how we come to see interactions with doctors. Though we may be inclined to view a visit to a pediatrician (or other specialists) as related to yearly checkups, vaccinations, or specific medical procedures and needs, it can also be seen as a social interaction, a relationship that ideally embodies effective interpersonal communication skills as well as knowledge of social expectations and rules. In other words, the office visit is not simply a set of discrete “tests” or tasks enacted on a more or less willing child.

In their play, children remind adults of this very social dimension of a trip to the doctor’s office. That is, they frame the experience through narrative, thus seeking to give some coherent shape to the event. If disinclined to think of an appointment in this way, we might recall the typical children’s activity of “playing doctor” and of the various toys that invite a recreating of listening to the heart, taking a temperature, and more. For children, this activity serves several purposes, but it can be especially important to consider how the performance of the patient-doctor dynamic transforms the unease of a visit into a familiar story. For those on the spectrum, however, this kind of imaginative play is impaired. (In diagnostic manuals, autism is often characterized as behaviors that reflect the absence of symbolic or imaginative play.) In other words, the comforting knowledge of this seemingly universal children’s story—and the broader social understanding of the cues and codes involving parents, receptionists, nurses, and doctor—is not easily absorbed or learned. Again, individuals on the autism spectrum have an impairment in social interactions, an inability to build or to build from the scaffolding of such stories, and, as some evidence suggests, a brain less able to construct meaning through narrative.

To be able to provide simple stories of a routine checkup or more extensive procedures, then, can be a very useful strategy. During his tonsillectomy at age 5, Mary and I came to understand the effectiveness of building Jacob’s story repertoire, of providing what he could not easily construct for himself.

Starting around age 4, we began to notice that Jacob’s breathing during sleep sounded congested. We began to talk about his nighttime “slurpiness” with regularity. Going to our pediatrician, he noted that his tonsils looked inflamed and that, within a year, it would be good to schedule surgery. Hearing of our concerns in terms of how to prepare Jacob for such an event, he indicated that the hospital had a brief video describing the outpatient procedure.

Entitled “Nick’s Story,” the video begins with a voiceover stating that “this is a story about a boy named Nick,” a child around 8 years old. As the narrator continues, we see a series of Nick’s drawings of events surrounding the procedure. The screen displays pictures of the young boy waking up on the morning of his tonsillectomy, standing near the breakfast table looking sad (because he is not able to eat or drink), and holding a favorite stuffed animal that he could bring to the hospital. The video then switches to the real Nick and a succession of photographs with voiceover descriptions of their meaning: Nick arriving at the hospital with his parents, his putting on a surgical gown, his getting a blood pressure check, his saying “goodbye” to his parents, and, finally, several still shots showing the surgery room and what would happen immediately before and after the procedure. In a brief and specific narrative, the actual “social” dimensions of the day are made visually explicit. For Nick, the day is not reduced to a discrete, surgical procedure. Rather, it is a tale with characters who offer support at each step; it is a story with a journey plot that involves movement through a strange and potentially threatening space as well as a conclusion that includes the stereotypical but comforting eating of a popsicle and a playful wheelchair ride to the exit door.

For my son, these visual images were especially important, for they mirrored storybooks from home as well as his own way of processing the world through personal sketches or videos. By this time, as we had seen with his use of “The Cow Jumped Over the Moon” and other Mother Goose language and images in his communications with us, Jacob had begun to mine storybooks and videos for both words and narrative structures to apply to his own life and its sometimes confusing or worrisome social interactions. For example, when a babysitter came one evening when Jacob was 4, my son said, “Something doesn’t smell right!” This line comes from the movie Homeward Bound , a film about two lost dogs and a cat finding their way home. One dog utters these words to his companions when left at a friend of his owners. For Jacob, his use of this script signaled both his tendency to turn to a movie dialog as a story template for his own experience and to employ language—quite idiosyncratically—to convey an emotion comparable to his own. Does not the appearance of a babysitter, after all, suggest an impending abandonment?

Looking back over the video, I am struck by one moment and how it still provides my 19-year-old son with language for doctor’s visits. In the video, a picture shows a nurse taking a blood sample. The narrator states, “That did hurt but only for a second.” Years after this particular event, Jacob still prefaces a yearly flu shot with an echo of this video talk: “It will hurt,” he thinks aloud, “but only for a moment.” We later learned that this line gets expressed in another doctor story for children, Curious George Goes to the Hospital : “‘It’s going to hurt, George,’ [the nurse] said, ‘but only for a moment.’”

Though tailored for outpatient tonsillectomies at our local hospital, “Nick’s Story” mirrored an intervention that has been helping families since the early 1990s: Social Stories. Developed by Carol Gray, Social Stories draw from the knowledge that those with autism have difficulty discerning, anticipating, and understanding the flow and basic facts of social situations. Not wired to be attentive to and easily understand such facts or rules, children on the spectrum experience various situations with significant levels of anxiety, often communicating worry and confusion through repetitive or ritualistic actions, idiosyncratic language, and, unfortunately at times, meltdowns. Problems in communication make such situations more difficult; children do not seek comfort or social knowledge in the eyes or actions of their parent or care provider. Again, without visual and/or verbal cues, the touch of a stethoscope can be sudden and even physically painful. Simple directions or requests can be lost in the sensory confusion. And, unfortunately, these responses can be quickly judged as “stubborn” or “undisciplined” (and interpreted solely as a sign of “poor parenting”) rather than an attempt to express distress through the only means available.

While the term “spectrum” in “autism spectrum disorders” does underscore the uniqueness of how individuals might respond to the strange world of a doctor’s visit, it might nevertheless be useful to keep in mind that Social Stories, especially those with visual supports, can help prepare for the seemingly routine aspects of an appointment as well as unusual and sometimes painful inpatient or outpatient procedures. (Information regarding this intervention can be found at http://www.thegraycenter.org/social-stories .) Parents and doctors set up the possibility for successful interactions when the experience is not a complete surprise. Even for those individuals who are highly impaired, all parties benefit from focusing on aspects of autism that can be accommodated as well as interpreting behaviors as forms of communication. Moreover, parents and doctors build a team approach that best serves the child when not suspicious of each others’ assumptions and responses concerning what transpires during the visit.