Abstract
The authority to diagnose is a distinguishing prerogative of modern medicine. While a growing body of research addresses various aspects of diagnosis, few studies analyze just how it is achieved through talk-in-interaction. This paper examines how clinicians assembled a diagnosis of a child who was evaluated for autism. Drawing on audio and video recordings at a clinic for developmental disabilities, I use a combination of ethnomethodology and conversation analysis to show how a critical fact about the child’s mental functioning was formulated, challenged, and transformed across three consecutive stages of his evaluation: (1) testing, (2) a case conference among clinicians, and (3) an informing interview where the diagnosis was delivered to the parents. I analyze how this fact emerged as an outcome of clinician-child interactions, and how clinicians used storytelling to render its diagnostic implications. In addition to examining how these stories are methodically produced, I argue that they frame the child’s behavior in ways that suggest a lack of competence while eliding the skills and competencies he may have been displaying.
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Notes
That is, there is rarely a direct, one-to-one correspondence between symptoms and a single, unique diagnosis.
In this regard, storytelling plays a similar role to that documented in Gibson’s (2011) analysis of deliberations about how to respond to the Cuban Missile Crisis. Although the actors in his study (President Kennedy and his advisors) told stories about possible future scenarios, while those in the present one narrate past events, in both cases the participants use storytelling to formulate a matter of concern (the missile crisis, a clinical event), evaluate different interpretations and positions, steer deliberation down a particular path(s), and eventually forge a consensus (a plan of action, a diagnostic decision).
The data from the 1980s consist of 12 cases in which children were evaluated for and diagnosed with developmental disabilities. The more contemporary data, collected between 2011 and 2014, includes 46 cases where children are evaluated for autism and related disabilities. Altogether, then, the data include 58 cases, in which 33 children received a diagnosis of autism or autism spectrum disorder (ASD).
Central clinic takes the same interdisciplinary approach to diagnosis today as it did in the 1980s. Moreover, the diagnosis still occurs in three basic stages: testing, pre-staffing, and staffing (see below).
The evaluation took place in 1985. I selected this case for the present paper because it provides an especially perspicuous illustration of the patterns and processes observed in the dataset as a whole, particularly those involving storytelling, deliberation, and the achievement of consensus about diagnosis. While the specific tests used to assess autism have changed over the years, they continue to focus on the child’s social functioning and cognitive abilities. Moreover, my analysis reveals that the basic practices used by clinicians to determine a diagnosis, including storytelling but also other generic actions like assessing, reporting, etc., have remained highly consistent over time (see Maynard and Turowetz 2014). Put in the terminology of Sacks et al. (1974), while the precise content of the tests is context sensitive and changes over time, the generic procedures used to achieve diagnosis are relatively more context free.
The data for this paper provide extensive documentation of key stages in the diagnostic process as they unfolded in both front- and backstage regions (i.e. the pre-staffing conference; see Goffman [1959] on region behavior), including informal pre- and post-meeting discussions. Although my collection may not include all the interactions among clinicians—for example those that may have occurred in an office, hallway, etc., to which the researchers were not privy—ethnographic observations suggest that these spaces were rarely, if ever, used for case discussions. The video recordings, field notes, and official reports usually capture all—and certainly the most crucial—moments in the case.
In their research on clinical testing, Marlaire and Maynard (1990) identify a three-part test sequence that structures the interaction between child and clinician. The sequence consists of (1) a test question, (2) a response, and (3) a sequence-closing acknowledgement by the clinician. The authors observe that clinicians then routinely record the child’s answer before beginning the next test-sequence. Thus, when the clinician closes the sequence and writes in the exam booklet, she can be seen to treat the child’s utterance as his (correct or incorrect) answer. This is what appears to be happening in the Tony-Laura interaction, with the clinician orienting to confirming the child’s response (line 16) and subsequently recording it (line 19).
This would also be consistent with Corsaro’s (1979, 320–22) finding that children may use questions to initiate play, a strategy he calls “questioning participants.” Indeed, we could speculate that Tony may have been initiating play as early as line 21 with “Can I drink it?” If so, Laura’s response would put her in second position in a play sequence, at least from the child’s perspective.
Laura’s depiction of the key actors in her story, including herself, the child, and the test instrument (itself an actant), follows a general pattern found in clinical storytelling (Turowetz 2014). Both she and the test instrument are largely in the background, while Tony is the focus of the story, at least until corrective or remedial action is needed. Thus, the test instrument is glossed with minimal formulations—it “was” there and had certain criteria (i.e. distinguishing empty and full) while the clinician’s role is to remedy a problem. By contrast, Tony, as the child subject, is described in a more elaborate, evocative way.
Note how Molly makes use of the same real-pretend dichotomy that Laura employed in her original story (segment #2, lines 11–12) and her retelling of it (segment #3, lines 20, 22). In this way, she not only references the story, but Laura’s interpretation of the story.
The official diagnosis, written in the letter and sent to parents after the family’s visit to the clinic, was “autism and unspecific mental retardation, currently functioning in the moderate range.” The term “unspecific” leaves open Tony’s actual level of functioning, which may be above the “moderate” level, and reflects in part the problem-solving skills he was seen to display during testing, as well as various measurement challenges the clinicians encountered as they evaluated him (including the possibility that he suffered from a seizure disorder). While not one of the formal criteria for diagnosing autism, measures of cognitive functioning have long played an important role in the specification of autism spectrum disorders, with high-functioning autism being distinguished from low functioning autism in large part on the basis of IQ and adaptive skills. Indeed, by the time DSM-IV (circa 1994) was released (the clinicians who diagnosed Tony used DSM-III, published in 1980), the absence of cognitive delay in childhood (roughly average intelligence or above), coupled with non-delayed language acquisition, became the basis for a differential diagnosis of Asperger’s Syndrome (AS), a high-functioning form of autism. Although Asperger’s has been removed from DSM-V (circa 2013), persons with AS are now considered to have high–functioning or “less severe” autism, which distinguishes their course of treatment and prognosis from that of their lower functioning, more severe counterparts.
There is a substantial literature in medical sociology dealing with storytelling and narration, particularly with respect to patients making sense of illness experiences (e.g. Charmaz 1999; Frank 2013). This research deals mostly with narratives that individuals tell about their own significant life events, whereas in the present paper, I am specifically interested in the interactional functions storytelling performs, particularly those of formulating clinical evidence and establishing diagnostic consensus. This focus on narrative-in-interaction also contrasts with studies of physicians’ narratives (e.g. Hunter 1991) that focus on the private cognitions of practitioners, rather than their public, interactional production.
Close analysis of testing-in-interaction has the potential to identify things that are overlooked by traditional test criteria and protocol, as well as specifying precisely how they are overlooked—e.g. through the sequencing of test items; tests and testers’ emphasis on abstract competence; ways of locating and telling about story-worthy episodes, etc. To the extent that these processes are systematic, test makers and givers may be able to take them into account, and possibly ameliorate them, in their practice.
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Acknowledgments
I would like to thank the editor and anonymous reviewers for their helpful feedback and suggestions. I am also grateful to Doug Maynard for his comments and advice on earlier drafts of this article.
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Turowetz, J. The Interactional Production of a Clinical Fact in a Case of Autism. Qual Sociol 38, 57–78 (2015). https://doi.org/10.1007/s11133-014-9294-8
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DOI: https://doi.org/10.1007/s11133-014-9294-8