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Our circuits, ourselves: What the autism spectrum can tell us about the Research Domain Criteria Project (RDoC) and the neurogenetic transformation of diagnosis

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Abstract

The Research Domain Criteria (RDoC) project is an ambitious new initiative by the National Institute of Mental Health that aims to comprehensively redefine mental illnesses as problems of neurogenetic ‘circuitry’. This essay explores potential implications of this nascent approach. Drawing on data from two studies that examine the diagnosis of autism spectrum disorder, itself recently reconceptualized along lines similar to this new diagnostic paradigm, I argue that such ‘circuit disorders’ differ from their predecessors in two significant ways. First, while psychiatric disease entities under the previous paradigm were understood as fundamentally separable from the affected person, circuit disorders are bound up in intimate neuropsychological processes such as memory, perception and desire; they are thus often experienced as constitutive of identity by those living under their description. Second, rather than being limited to matters of ‘clinically significant impairment’, circuit disorders are multivalent, encompassing valued as well as devalued traits. Given that one major aim of the RDoC is to allow for pre-emptive biomedical intervention upon pre-symptomatic states, these emergent qualities of circuit disorders raise complex ethical concerns. I conclude by illustrating the way these concerns become obscured in the transition to an ostensibly value-neutral biophysiological paradigm.

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Notes

  1. NIMH is the subset of the National Institute of Health responsible for mental health research and treatment in the United States and the world’s largest organization dedicated to the study and treatment of mental disorders.

  2. Quotations from (NIMH, 2011) are taken from the document “NIMH: Research Domain Criteria Project (RDoC), Draft 3.1: June, 2011”. This document was for several years the main source of information on the National Institute of Mental Health website about the RDoC project. It has since been replaced on the website by more recent material updating readers on new developments within the initiative, and is only available at the Internet Archive.

  3. Cuthbert and Insel (2013) themselves have conceptualized the RDoC as a move away from what they call a “pathogen model of illness”(p. 5). As one anonymous reviewer for this piece observed, however, contemporary psychiatric research and practice draws on a diverse range of disease theories, some of which are organized around endogenous factors such as system dysregulation. Such nuanced understandings of human systems, I aim to demonstrate here, coexist and interact in consequential ways with the somewhat cruder self/other distinctions that characterize elements of both psychiatric diagnosis and public health rhetoric.

  4. Asperger Disorder, more commonly known as Asperger’s Syndrome, is a diagnostic category added to the Diagnostic and Statistical Manual of Mental Disorders in 1994 and removed from it in 2013. Understood to be one of the ‘autism spectrum disorders’, it describes those who display the social impairments and restricted/repetitive behaviors typical of autism, without comorbid intellectual impairment or delay in acquiring spoken language.

  5. Her sense of empowerment with regard to psychiatric treatment differs markedly from that of, for example, the lower-SES African-American families described in Carpenter-Song (2009). These families did not experience access to therapeutic services as a consumer choice under their control. For them, the medical gaze was more likely to distort than transparently reflect their or their children’s identity and sense of self (see also Magaña et al, 2012). This discrepancy suggests that class, race and ethnicity significantly shape processes of neurosocial identity formation.

  6. In some respects, the RDoC is more continuous with this psychodynamic diagnostic paradigm than it is with the DSM-III and IV. Striking convergences can be found between the RDoC and the Psychodynamic Diagnostic Manual (Alliance of Psychoanalytic Organizations, 2006): both employ dimensional instead of categorical diagnosis, both emphasize underlying etiologies over symptoms and both favor developmental over singe-time-frame case formulations.

  7. For a more in-depth history and discussion of the rationales behind person-first language within disability communities, see Linton (1998), Haller et al (2006), Kailes (2010).

  8. Mental disorders and their treatment certainly do not lack moral resonances under the biomedical psychiatric paradigm organized around the DSM; work by Luhrmann (2001) and Brodwin (2013) poignantly illustrate the complex moral dilemmas constantly negotiated by patients and providers. What I wish to emphasize here is the way that, within this paradigm, the bits of the body affected by psychiatric disease are described as distinct from the affected person’s identity, personhood and everyday dealings with the world.

  9. In his analysis of methodological and conceptual challenges facing the RDoC, Lilienfeld (2014) makes a similar point about the importance of distinguishing between “biological predispositions to psychopathology and the behavioral manifestations of these predispositions”, which can be constructive as well as destructive (p. 135).

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Acknowledgements

The research leading to this publication was made possible by generous support from the NIMH (Ruth L. Kirschstein National Research Service Award for Individual Predoctoral Fellows, Award #F31MH082551-02), a National Science Foundation Dissertation Improvement Grant (Award #0823390) and a Dissertation Fieldwork Grant from the Wenner-Gren Foundation for Research in Anthropology (Award #7836). Its contents are the responsibility of the author and – perhaps manifestly – do not necessarily represent the official views of awarding organizations. The author would like to thank Christine El-Ouardani, Kathryn Goldfarb, Chloe Silverman and four anonymous reviewers for their support in developing the arguments in this article, and the students in her “Clinical, Critical and Cultural Approaches to Mental Health” seminar at the University of Chicago for thinking through many of the issues in this article with her.

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Fein, E. Our circuits, ourselves: What the autism spectrum can tell us about the Research Domain Criteria Project (RDoC) and the neurogenetic transformation of diagnosis. BioSocieties 11, 175–198 (2016). https://doi.org/10.1057/biosoc.2015.31

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