Sociology of Diagnosis: Volume 12

The chapters PJ McGann and David J. Hutson have assembled for this volume are not only timely, coinciding with the appearance of DSM-V, but mark a defining moment in which a new subfield of medical sociology has emerged. Diagnosis, which refers both to diagnostic categories and the process of creating and applying them, is a central feature (Blaxter, 1978) – if not the central feature of medical work. Annemarie Jutel, who has done much to build the sociology of diagnosis, has described the wide array of “work” diagnosis performs in the medical world:Diagnosis is integral to medicine and the way it creates social order. It organizes illness: identifying treatment options, predicting outcomes, and providing an explanatory framework. Diagnosis also serves an administrative purpose as it enables access to services and status, from insurance reimbursement to restricted-access medication, sick leave and support group membership and so on… (Jutel, 2009, p. 278)

Throughout the late 19th and early 20th centuries, one of the many techniques used by physicians and psychiatrists to diagnose patients involved external and highly public examination. Typically conducted as a lecture to other medical experts and students, the patient was placed in the center of a round room with onlookers arranged in tiered seating to guarantee an unobstructed view. As the lead physician detailed the list of symptoms, using the patient's body as an illustration, observers witnessed the behavioral signs for themselves and discussed the possible underlying conditions or pathologies. This process of consultation and naming worked to increase the relative reliability among experts and bolster the professional reputations of medicine and psychiatry alike (Conrad & Schneider, 1992; Gillis, 2006; Grob & Horwitz, 2010). As researchers have noted (Aronowitz, 2001; Foucault, 1973), this change from focusing on disparate, idiosyncratic symptoms as expressions of individual illness to a system that recognized disease states comprised of symptom clusters marks a historical turning point in the history of medicine. The shift toward a classification scheme that linked medicine with science and technology bolstered medical authority and the power of physicians. In addition to professional credentials, accumulated knowledge, and institutional legitimacy, the authority of modern medicine both rests on and is expressed by medicine's decisive power to name and categorize through diagnosis (Jutel, 2009). Even as medical prestige has eroded, ceding some of its power to other entities,¹ physicians remain the final arbiter of official medical categories (Pescosolido, 2006), judges of what is, and what is not, a “real” diagnosis. In the diagnostic process, one looks within to reveal the nature of disease from without – empirical observation becomes immutable fact. Of course, as critical perspectives on medicine have long pointed out (Conrad & Schneider, 1992; Zola, 1972), the scientific “fact” of one time and place is the mythology or ignorance of another. Diagnosis, as both category and process (Blaxter, 1978), is infused with all manner of things social, historical, and cultural. This volume explores some of these infusions. In so doing, it aims to clarify and contribute to the emerging sociology of diagnosis – an endeavor first called for by Brown (1990), but more recently revived by Jutel (2009).

Purpose – This chapter presents a case for reframing medical sociology to focus on diagnosis as a pivotal category of analysis via an extended literature review of the diagnosis as a tool of medicine.

Methodology/approach – Conceptual overview.

Practical implications – By reviewing the range of social functions served by diagnosis, and the similarly wide assortment of social forces that shape diagnostic categories, this chapter pushes social scientists and theorists to consider diagnosis as a cornerstone to the understanding of health, illness, and disease.

Originality/value of paper – Building on Brown's earlier call for a sociology of diagnosis, this chapter sets forth potential parameters for this field. It defines how the study of diagnosis is dissipated across myriad areas of scholarship, including medicalization, disease theory, ethics, classification theory, and history of medicine. Extirpating diagnosis and revealing it for specific discussion provides an opportunity to study topics such as illness experiences, health social movements, and disease recognition from a different and rich perspective.

Purpose – The purpose of this chapter is to theorize the relationship between diagnosis and medicalization through an examination of the medicalization of childhood gender variance and the Gender Identity Disorder of Childhood diagnosis.

Methodology/approach – The chapter examines textual data (published clinical and research literatures, and critiques of the diagnosis appearing in a range of venues) to track how childhood gender variance is medicalized over time and the role of diagnosis in that medicalization.

Findings – While diagnosis certainly plays a role in shoring up medicalization, this case study reveals the many ways in which diagnoses may also become key tools in attempts to curtail medicalization.

Research limitations/implications – As a case study, the findings are not generalizable to all diagnoses. As a study of an instance of the medicalization of deviance, these findings may be particularly applicable to analogous cases.

Social implications – These findings show the sometimes tenuous nature of medicalization processes, and the social uses of diagnoses in those processes.

Originality/value of paper – This chapter sheds light on a relationship that is often assumed to be unidirectional (e.g., that the formation of diagnosis results in increased medicalization), and answers calls for a more nuanced sociology of diagnosis, including greater attention to the relationship between diagnosis and medicalization.

Purpose – In this chapter, I examine the ways that various trauma carriers, including social movements, self-identified survivors, professional organizations, and advocates make public claims about trauma and the PTSD diagnosis as they work to define moral and political issues.

Methodology/approach – Employing the method of social pattern analysis, I analyze a variety of narrative data pertaining to issues such as child sexual abuse, war, slavery, and genocide.

Findings – Trauma carriers engage in significant social memory work and collective identity work, define social problems, and practice social activism as they address the causes and consequences of psychological suffering. Within the context of modern diagnostic psychiatry, the PTSD diagnosis stands out as a unique narrative of social illness. The PTSD diagnosis is a powerful cultural script that various individuals and interest groups use to interpret mental health symptoms while attributing psychological consequences to social causes as opposed to problems rooted in the individual's psyche (as with psychoanalysis) or neurophysiology (as with modern diagnostic psychiatry). By implication, the social world must be “cured” for the individual to be healthy.

Originality/value of paper – I detail the unique sociocognitive implications of the PTSD diagnosis, highlighting its impact on our collective understanding of particular traumatic experiences and the shared nature of posttraumatic affect. I show the relevance of social memory studies, the more broadly conceived sociology of culture and cognition – especially as it pertains to collective identity and classification norms, the sociology of health-focused social movements, and the analysis of social problems claims-making to an emerging sociology of diagnosis.

Purpose – This chapter has two central purposes. The first is to suggest that western, as well as non-western, illness categories are culture bound. The second is to elucidate the diagnostic and treatment implications associated with adopting a reductionistic diagnostic approach, including for psychiatric as well as nonpsychiatric illnesses.

Approach – A comparative approach is used to highlight the differences between American psychiatry's diagnostic system (i.e., DSM) and French child psychiatry's diagnostic system (CFTMEA). The analysis begins by identifying the overarching differences between the systems, then analyzes the differences between their respective versions of the Attention Deficit/Hyperactivity Disorder diagnostic category, and ends by tracing the diagnostic and treatment implications of those differences.

Findings – This analysis reveals that the systems differ in three significant ways: (1) theoretical orientation (biological vs. psychodynamic), (2) the view that symptoms should be counted as opposed to understood, and (3) the presence of symptom checklists versus their absence. Additionally, these differences encourage American clinicians to both administer the ADHD diagnosis to a greater number of symptomatic children and to treat these children with psychiatric medications.

Contributions to the field – The analysis makes three contributions to the field: (1) the comparative analysis highlights the limitations of the DSM's ADHD definition; (2) it strengthens the case for seeing western diagnostic categories in general, and the DSM categories in particular, as cultural artifacts; (3) it elucidates the profound relationship between diagnostic systems and both diagnostic rates and treatment practices.

Purpose – To assess labeling and social control of clients in contemporary mental health care organizations.

Methodology/approach – Fifteen months of observation in two multiservice mental health care organizations, interviews with workers and clients, and analysis of organizational documents.

Findings – The organizations used a variety of organizational labels, both official and informal, which served distinct purposes in organizational life and which did not always agree in their construction of the client. Official mental illness diagnosis was a bureaucratic label, while informal labels determined the types of social control to which clients were subjected. Clients who were informally labeled severely mentally ill were subject to integrative social control, while exclusionary social control was applied to those informally seen as not being severely mentally ill. Unlike in classic studies of mental health care, looping processes, in which client behaviors are viewed as symptoms, do not reliably predict the types of labels or social control applied to clients.

Implications – It is important for a sociology of diagnosis to contextualize official diagnosis in the repertoire of organizational labels applied to clients in mental health care, recognizing that it plays a limited but important role in organizational life. Informal labels, which at time conflict with official diagnosis, play a more prominent role in the management of everyday organizational life.

Purpose – There is a paucity of research that examines how diagnostic decisions are made by psychiatrists. Moreover, previous work in the area tends to be grounded in labeling theory, which highlights the conflict-based nature of diagnosis. The goal of this research is to examine the utility and benefits of diagnosis to psychiatrists' everyday work.

Methodology – Using institutional ethnography (IE), I undertook a small-scale interview-based study that documented the diagnostic processes of three psychiatrists in Calgary, Alberta, Canada. The IE-based goals of the study were to: (1) identify what texts were employed during the diagnostic process, (2) map sequences of action and text that coordinated psychiatric decision-making, and (3) theorize the utility of diagnosis for the everyday work of psychiatrists.

Findings – The analysis demonstrates how diagnosis can be understood as a valuable work process that produces a standardized diagnostic story in order to bring an individual's experiences of distress into relation with psychiatrists' daily practices, and institutional discourses more generally.

Limitations – Although IE-based research does not depend on large sample sizes for analytic accuracy, results from the current study need to be replicated because of the limited number of interview participants and to examine whether the diagnostic process is generalizable to other settings.

Social implications – This research challenges the idea that standardization through diagnosis is a negative process and highlights the value of diagnostic decision-making in the daily work of psychiatrists.

Purpose – Intersexuality is examined from a sociology of diagnosis frame to show how the diagnostic process is connected to other social constructions, offer new support that medical professionals define illness in ways that sometimes carries negative consequences, and illustrate how the medical profession holds on to authority in the face of patient activism.

Methodology/approach – Data collection occurred over a two-year period (October 2008 to August 2010). Sixty-two in-depth interviews were conducted with individuals connected to the intersex community including adults with intersexuality, parents, medical professionals, and intersex activists.

Findings – Medical professionals rely on essentialist understandings of gender to justify the medicalization of intersexuality, which they currently are doing through a nomenclature shift away from intersex terminology in favor of disorders of sex development (DSD) language. This shift allows medical professionals to reassert their authority and reclaim jurisdiction over intersexuality in light of intersex activism that was successfully framing intersexuality as a social rather than biological problem.

Practical implications – This chapter encourages critical thought and action from activists and medical professionals about shifts in intersex medical management.

Social implications – Intersexuality might be experienced in less stigmatizing ways by those personally impacted.

Originality/value – The value of this research is that it connects the sociology of diagnosis literature with gender scholarship. Additional value comes from the data, which were collected after the 2006 nomenclature shift.

Purpose – To examine debates within the transgender rights movement over the GID diagnosis in order to demonstrate how diagnosis can be resisted as a source of stigma and social control at the same time that it is embraced as a means of legitimating experience and gaining access to resources, including medical services.

Methodology/approach – This chapter draws on qualitative data from: in-depth interviews with transgender rights activists and advocates, participant observation in transgender health care and activism settings, and content analysis of print and web-based materials on transgender health.

Findings – Transgender rights activists and advocates overwhelmingly reject the pathologization of gender variance. However, some actors advocate complete demedicalization, while others advocate diagnostic reform. Actors' advocacy for each position is influenced by the perceived costs versus benefits of diagnosis.

Social implications – The findings of this research shed light on the multiple and often contradictory effects of diagnosis. Diagnoses can both normalize and stigmatize. They can function to allow or deny access to medical services and they can support or act as barriers to legal rights and protections. Understanding these contradictory effects is essential to understanding contests over diagnosis, including the contemporary debate over GID.

Originality/value of paper – Through examination of an intra-constituent contest over diagnosis, this research demonstrates the need to distinguish medicalization from pathologization and illustrates the importance of examining the multiple and contradictory effects of diagnosis, both in and outside of medical settings.

Purpose – I analyze how laypersons and professionals navigate challenges to the legitimacy of Attention Deficit/Hyperactivity Disorder (AD/HD). The disorder is modeled as a cultural object manifested in the discursive practices of multiple actors forming a knowledge coalition of professionals, laypersons, governmental, and corporate actors. Coalition members faced challenges to the disorder derived from popular skepticism and from professional's contradictory knowledge claims and diagnostic practices.

Methods – I observed these processes in a two-year, ethnographic case study supplemented with a two-stage, open-ended interview with core members of an AD/HD informational and support group.

Findings – Parents and coalitional professionals managed these challenges differently depending on the status of the source (professional vs. nonprofessional) and the alignment (within the coalition vs. nonaligned) of the challenge. Nonprofessional skeptics were easily countered as ignorant moralists who lacked objective knowledge of the disorder – a tactic termed credentialism. The contradictory diagnoses and treatments of professionals were managed as instances of mal-diagnosis – a construct employed by both professionals aligned with the diagnosis and laypersons associated with the disorder. Finally, while parents actively sought a diagnosis as an objective valorization of their status, they remained skeptical of AD/HD; however, in achieving diagnosis they also worried that the methods used to establish a diagnosis were possibly unreliable.

Originality/value – This study contributes to the emergent sociology of diagnosis by describing the techniques used by laypersons and some professionals in maintaining a contentious diagnosis.

Purpose – This chapter discusses the proposed changes in the Diagnostic and Statistical Manual of Mental Disorders (DSM-V), which eliminates Asperger's disorder (AD) and replaces it as “autism spectrum disorder.” Implications of these changes on the identity of adults with AD and the influence of everyday life experiences will be addressed.

Methodology/approach – This research is based on 19 interviews with adults diagnosed or self-diagnosed with AD. Central themes surrounding issues of identity and everyday life experiences were determined using grounded theory approaches.

Findings – This study demonstrates how the diagnosis and self-diagnosis of AD is fused with individual identity. It also shows how Asperger identity is positively embraced. The proposed changes to eliminate AD in DSM-V threaten these assertions of Asperger identity, which could potentially enhance stigma experienced by people with AD. Regardless of its removal, Asperger identity must be considered within the broader context of people's everyday lives and how experiences in social interaction and communication can be strong agents of identity construction.

Social implications – The proposed changes to eliminate AD in DSM-V is a social issue that will impact individuals with Asperger's and their families, as well as health-care professionals, health insurers, researchers, state agencies, and educational providers.

Originality/value of paper – This chapter offers a unique insight into identity construction based on the diagnosis and self-diagnosis of AD.

Purpose – The aim of this study was to examine the retrospective accounts of young adults who were diagnosed with ADHD in childhood to explore how children diagnosed with ADHD learn about and experience their diagnoses.

Methodology – Ten 18–22 year-olds who were diagnosed with ADHD in childhood participated in semi-structured, in-depth interviews. The interviews were transcribed verbatim, coded, and emergent themes were identified.

Findings – Data analysis revealed that children often experience both aspects of stigma and empowerment as they learn about and make sense of their diagnoses. The data suggest that parents, who often act as mediators between the medical community and their children, delivering and explaining diagnoses to their children, can influence this process greatly. Parents can help children utilize their diagnoses to develop coping strategies for their disorder, or exacerbate stigma by withholding information about diagnoses. Participants suggested that parents should talk openly about diagnoses with children and offer coping strategies to employ.

Research limitations – Findings are based on retrospective accounts, and the participants' views are not intended to be representative of the views of all children with ADHD. A goal of future research is to expand this study to other pools of participants, including children.

Practical implications – The findings can inform the delivery and management of children's ADHD diagnoses.

Originality/value – The current study adds to research on the sociology of diagnosis and medicalization of mental health by examining the experiences of children diagnosed with ADHD.

Purpose – This study examines the consequences of sudden influx of medicalized discourse of gender in Japan by introduction of gender identity disorder (GID) in the late 1990s where transgender identities and the LGBT activism have had a different history and meanings from Western societies.

Methodology – I use discourse analysis of autobiographies of people with GID in Japan and the limited studies concerning the history of GID and transgender in Japan.

Findings – The introduction of GID to Japanese society contributed to increased social awareness of transsexual individuals. However, it also resulted in transsexual fundamentalism, which has excluded individuals who do not meet certain rigid medical and social identity criteria. This development reinforces the conventional binary gender norms instead of problematizing them. Furthermore, a legislation strictly based on the diagnosis has produced two groups: transsexual individuals with GID diagnosis who will be legally and socially recognized as legitimate, and those who are not GID and thus undeserving of such recognitions.

Social implications – Diagnosis cannot exist without criteria, therefore it is impossible for GID to function as an inclusive identity category. Therefore, we must seek a system to provide medical services that do not necessitate diagnosis. It is also crucial to nurture the social environment where people can freely choose gender identities and expressions that go beyond conventional binary gender system and to keep insisting on plurality and fluidity of gender so that people do not have to rush for a narrow window of recognition.

Purpose – Since the mid-20th century, drug addiction in America has increasingly been redefined as a disease and diagnosed as a widespread yet treatable disorder. The idiosyncrasies of addiction as a disease, however, have tended to block the journey of the addict from stigmatized moral failure to therapeutic reprieve. Centering in on the process of the “court-led diagnosis” of addiction, this qualitative case study uses ethnography and interviewing at a county drug court and one of its “partner” therapeutic communities to examine the process in detail, from the first negotiations between treatment and court personnel over the eligibility of the client, to the gradual inculcation of an addict identity by means of intensive cognitive education and behavioral modification.

Methodology/approach – Qualitative: ethnography and interviews.

Findings – We demonstrate that a shift from moral judgment to therapeutic sympathy is particularly unlikely for the fast-growing mass of criminal offenders whose diagnosis is spearheaded by the state in the form of the therapeutic jurisprudence of the drug court. For this group, the emphasis on the need for comprehensive resocialization and the close cooperation between the intimacies of therapeutic “rehab” and the strong arm of criminal justice “backup” not only maintains, but intensifies, moral tutelage, and stigmatization.

Social implications – The convergence of drug treatment and criminal justice tends to produce yet another stigmatizing biologization of poverty and race, lending scientific validity to new forms of criminalizing and medicalizing social hardship.

Purpose – To explore the ideological effects and social control potential of diagnostic biopsychiatry and encourage the sociology of diagnosis to retain key insights of early medicalization scholarship.

Methodology – As the sociology of diagnosis emerges from medicalization, it is imperative that the new sub-specialty retains the critical edge of the early scholarship. With this in mind the paper reviews key aspects of the medicalization thesis, emphasizing the links between medical definitions and social control processes (e.g. Conrad, 1992; Conrad & Schneider, 1992; Zola, 1972). Based on this review scholars are urged to be mindful of the “diagnostic imaginary” -- a way of thinking that conceals the presence of the social in diagnoses, and which closes off critical analysis of the existential-connectedness and political nature of diagnoses.

Findings – The paradigm shift from dynamic to diagnostic psychiatry in DSM-III opened the door to a new biomedical model that has enhanced American psychiatry's scientific aura and prestige. With the increased presence and ordinariness of diagnoses in everyday life, an illusory view of diagnoses as scientific entities free of cultural ties has emerged, intensifying the dangers of medical social control.

Social implications – By illustrating that diagnoses are cultural objects imbued with political meaning, the ideological effects and social control potential of diagnostic biopsychiatry may be mitigated.