Diagnostic Domain Defense: Autism Spectrum Disorder and the DSM-5

Abstract

A central mechanism by which medicalization occurs is through domain expansion, wherein an existing diagnostic definition widens to include cases beyond its original scope. This has been especially commonplace with respect to mental illness diagnoses. In contrast, there are few clear instances of domain contraction. The controversy surrounding the revisions to autism in advance of the publication of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) is thus of considerable importance. Many autism advocates feared the new definition of autism would exclude a significant number of individuals who are already diagnosed. We examine lay claims making to this perceived instance of domain contraction through a content analysis of online reader comments to a high-profile New York Times article reporting on the DSM-5 autism criteria. Our analysis points to an amorphous group of social stakeholders who express a variety of concerns about unabated medicalization. We also identify the stance of diagnostic domain defense, which is an oppositional response by laypeople with a personal connection to a diagnosis to a real or perceived challenge to the definitional boundaries of that diagnosis. Our analysis explicates the dimensions of diagnostic domain defense, which include its grounding in experiential certainty and anguish, and the accrual and deployment of diagnostic resources. We make a case for the utility of this concept for theorizing the relationship between lay claims making, diagnoses, and medicalization. We also make a case for the use of online reader comments as a way to unobtrusively study lay claims making related to pressing social problems in the Internet era.

Doing Abstraction: Autism, Diagnosis, and Social Theory

“…When Sara Brennan, then three years and four months old, arrived at CDDC in 2014, the operative diagnostic manual was DSM-5 (APA 2013), which had just been published. Whereas DSM-IV (APA 1994) and DSM-IV-TR (APA 2000) depicted autism as a family of disorders, DSM-5 collapsed discrete categories—autism, Asperger’s, and pervasive developmental disorder—into a single autism continuum, though not without controversy (Barker and Galardi 2015). Clinicians administered the second edition of the Autism Diagnostic Observation Schedule (ADOS II), a play-based assessment tool targeting various areas of a child’s social functioning, usually in conjunction with the Autism Diagnostic Interview-Revised (ADI-R), a structured interview with parents that elicits the child’s developmental history and current symptoms.…”

“… 12. See Barker and Galardi (2015:121) on the phenomenon of “domain contraction” and the DSM. Their particular investigation involves parents who were worried that the DSM-5 (APA 2013), with its far fewer symptom combinations than previous versions, would exclude children from diagnosis, treatment, and services. …”

Diagnostic dissonance and negotiations of biomedicalisation: mental health practitioners’ resistance to theDSMtechnology and diagnostic standardisation

“…, , Conrad , ). These transformations have been especially apparent in the case of mental illness and American Psychiatry (Barker and Galardi : 125, Smith ).…”

“…Biological, or what Horwitz () calls diagnostic psychiatry, has become the dominant aetiological explanation of mental illness. However, biomedicalisation processes are neither hegemonic nor without consequences (Barker and Galardi , Bryant , Clarke et al . , , Horwitz , Kokanovic et al .…”

“…While relatively few in‐depth, qualitative studies of how practitioners negotiate diagnostic and biomedicalisation processes exist, a central tenet of the sociology of diagnosis subfield is that biomedicalisation and diagnosis are separate but related processes (Jutel ). The role diagnosis plays in biomedicalisation varies: diagnosis can shore up (Dobransky , Godderis , McGann ), challenge (Whooley ), or simultaneously reinforce and resist biomedicalisation (Barker and Galardi , Bryant , Halpin , Kokanovic et al . , Nobbs , Smith ).…”