Clinical ethnography in severe mental illness: a clinical method to tackle social determinants and structural racism in personalised care

Ethnic inequalities in the experiences and outcomes of severe mental illness are well established. These include a higher incidence of severe mental illnesses (psychoses), adverse pathways into and through care, including crisis care, police and criminal justice systems involvement, and care under the powers of the Mental Health Act. The situation persists despite awareness and is driven by a mixture of the social determinants of poor health, societal disadvantage and structural racism, as well as conflictual interactions with care systems, which themselves are configured in ways that sustain or deepen these inequalities. Although training and education are often proposed, this is not shown to have sustained effects. Clinical processes (interviewing/assessment/formulation/intervention) need to address systemic influences and improve the cultural precision with which care is delivered, organised and commissioned. We discuss clinical ethnography and present evidence of its value in addressing systemic as well as individual care needs for diverse communities.

The Division of a Syndrome

This chapter provides an ethnographic case study of divided medicalization—the process through which multivalent, identitarian conditions get produced and then reduced to fit within a preexisting, disease-oriented clinical paradigm. The chapter is a clinical ethnography of a clinic located within a university medical center in an East Coast city, serving children diagnosed with Asperger’s syndrome. As medical categorizations and classifications expanded beyond the borders of the body to examine and remedy disorders of social life in the world, the staff shifted their own practice, exploring interventions that were playful and social, determined by pleasures as well as pathologies, and driven by the goal of expanding relationships rather than containing contagion. These interventions, however, crossed and complicated the clinic's carefully maintained boundaries between the inside and the outside of both the building and the body. In the end, the elements of autism that least fit within the existing medical paradigm were not incorporated into that paradigm but instead came to be extruded from it. Interpersonal, aesthetic, and identitarian elements of the condition were at first invited into but then gradually banished from the clinic, leaving behind an incomplete representation of complex social phenomena as diseases to be eliminated from individuals.

Bowling Together

The Conclusion ends this clinical ethnography with recommendations, suggesting that interventions for autism attend not only to individual bodies but also to the repair of strained social ties and the rebuilding of social capital. Drawing on follow-up interviews with the youth on the spectrum whose experiences inform the rest of the book, as they now move into young adulthood, the chapter describes the places where they have successfully found and maintained a sense of connection and community. Using literacy scholar James Gee’s concept of an “affinity space” as a starting point, this chapter identifies characteristics shared by the communities favored by these youth. Such spaces tend to be organized around a shared interest, activity, or affinity, characterized by an ethic and aesthetic of connection and repair, and motivated by an accessible notion of virtue that can be cultivated through practical action. As such, they may provide advantages not offered by traditional social skills groups. Through such work to maintain local connections, the social disorder arising from Asperger’s syndrome, autism, and other forms of neurodevelopmental difference can be addressed where it takes place: not only within individuals but between us as well.

Hardwired

Sociologist Nikolas Rose has posited the emergence of a “neurochemical self” organized around the assumption that our personal characteristics, moods and desires arise from our brain chemicals, and are amenable to molecular modulation through psychiatric drugs. Drawing on clinical ethnography of a series of support groups run by and for individuals diagnosed with Asperger’s syndrome and other autism spectrum conditions, this chapter charts the emergence of a contrasting model of the “neurostructural” self, oriented around the concept of developmental disability and its presumption of fixed innateness and lifelong course. In rejecting the demands for flexibility and adaptation entailed in neurochemical selfhood, this counterdiscourse of hardwired genetic and synaptic brain structure functions as a form of resistance against the demand for constant fluidity and change that characterizes late modernity. However, its core assumptions of a self that is fixed and inalterable are increasingly threatened by the ascendance of neural plasticity as a new mode of both conceptualizing and intervening on the self.

The Sword in the Soul

This chapter focuses on how youth diagnosed with Asperger’s syndrome and related autism spectrum conditions make sense of their own condition and its contradictions. Drawing on clinical ethnography in spaces where youth on the spectrum engage in shared creative practices, the chapter argues that medicalized discourses of autism as either a pathogen-like disease or a value-neutral form of neurogenetic hardwiring are insufficient to conceptualize the experiences of these youth. Autism, as they describe it, feels both intimate and alien, brings both cherished strength and terrifying vulnerability, and constitutes their sense of identity while also profoundly disrupting it. But the dominant ways of talking about autism, grounded in medical understandings of the self as sharply bounded and continuous, separate these aspects of lived experience from each other, casting them as radically incompatible. Instead, these youth playfully reinvent their autobiographies through an alternative shared mythology of mutant antiheroes with permeable selves, drawn from fantasy media, video games, comic books and other speculative fiction. In doing so, they generate new ways of coming to terms with the complexities of their condition.

The Summer of Adventure

This chapter chronicles a summer of clinical ethnography at a camp for youth with Asperger’s syndrome and related autism spectrum conditions, run by a close-knit community of live-action role-playing (LARP) gamers aiming to be inclusive of neurodiversity. Within this alternative culture with its alternative norms, the neurodevelopmental differences associated with Asperger’s took on new and valued meanings and manifestations. The chapter reviews predominant theories about cognition in autism (theory of mind, executive function, and weak central coherence), depicting these attributes not as individual deficits but as collaborative engagements with the physical, cultural, and symbolic materials of the surrounding world. Autism, the chapter proposes, is characterized by a heightened reliance on external systems of organization to create a sense of experiential coherence and to fend off existential threats of meaninglessness and chaos. LARP games offer one such system of organization through their framework of stable, shared narratives, and genre conventions. These resources support interpersonal coordination, bringing together people who share relevant cognitive characteristics into a tenuous but deeply valued community.

The Dilemma of Cure

This chapter examines the ethical questions surrounding the cure and prevention of autism as they are negotiated by families affected by Asperger’s syndrome and related autism spectrum conditions. Through interviews with youth on the autism spectrum and their families, as part of a clinical ethnography of these families at home, in school, and within their communities, the chapter argues that the seemingly insoluble quality of ethical conflicts around neurodiversity is underpinned by individualization: a model of the self as sharply bounded and defined exclusively by internal traits. Within many of these families, autism was understood to shape the motivations, desires, interests, and daily activities that constituted the identities of these youth, making the removal of autism feel like an erasure of their personhood. At the same time, in a context where they are expected to win their social roles through such individual attributes, the lack of social support available to these youth put them at high risk for social abandonment and invisibility as adults, especially outside of their parental households. Prevention and cure thus come to feel like both a profound violation and an ethical necessity.

Living on the Spectrum

Autism is a deeply contested condition. To some, it is a devastating invader, robbing families of their children and sufferers of their personhood. To others, it is a form of neurodiversity, a fundamental and often valued aspect of identity that is more similar to race or gender than to disease states. How do young people coming of age with an autism spectrum diagnosis make sense of this conflict in the context of their own developing identity? The book addresses this question through sustained ethnographic engagement, informed by both clinical psychology and anthropology, within communities where people on the autism spectrum come together to live, learn, work, love, and play. Using an approach known as clinical ethnography, the book tracks neuroscientific discourses as they are adopted, circulated, and transformed among those affected by Asperger’s syndrome and related autism spectrum conditions. Dominant ways of talking about autism, whether as invasive disease or as hardwired neurogenetic identity, share a fundamental presupposition: that the healthy self is sharply bounded and destroyed if it is altered. However, the subjective experiences of youth on the spectrum exceed the limitations of these medical models. Reaching beyond medicine for their narratives of difference and disorder, these youth draw instead on shared mythologies from popular culture and speculative fiction to conceptualize their experiences of discontinuous and permeable personhood. In doing so, they also pioneer more inclusive understandings of what makes us who we are.