Sorting out autism spectrum disorder: Evidence-based medicine and the complexities of the clinical encounter
Brydan Sarah Lenne
The autism spectrum is truly diverse. It encompasses genius qualities (the savant), eccentricities and quirkiness, communication difficulties, learning difficulties, social awkwardness, and profound disability. Thus, clinical decisions regarding the diagnosis and treatment of Autism Spectrum Disorder (ASD) are commonly based upon heterogeneous evidence and expert opinion. This thesis presents a complex and socially nuanced picture of ASD within the medical context by focusing on understanding how the medical profession negotiates with and attempts to manage the complexities, uncertainties and difficulties associated with diagnosing this disorder. Of particular interest is the role played by diagnostic manuals, standardised tools and statistical approaches in the diagnostic session, and how these documents influence clinical decisions. To explore these issues a video-reflexive approach was employed to document ASD diagnostic sessions during a hospital drug trial for Australian autistic children with repetitive behaviours. Diagnostic sessions involving the children and parents were videoed and later played back to the clinicians for their analysis and comment in one-on-one interviews. This thesis explores the potential of video to allow clinicians to explain tacit knowledge and practices and for it to reinvent assumptions clinicians may have had about the way that they diagnose, and draws attention to the necessity of tinkering with and adapting diagnostic tools to particular patients and circumstances.
(Supervisors: Professor Catherine Waldby and Dr Katherine Carroll (Mayo Clinic)
Psychotropes: Models of Authorship, Biology and Molecular Politics in Herman Melville, Aldous Huxley, and Philip K. Dick
Drawing on a range of psychoanalytic, psychiatric, and biomedical theorisations and models of the human subject, my thesis returns to the difficult question concerning the chiasmic relation of the writer and their biological identity-a question notoriously begun in Plato’s description of the “pharmakon” in his Phaedrus, and revivified by Descartes’ dualistic schema of mind and body. Central to my study of the author figure, whom I call the “scrivener,” is the influence of what Nikolas Rose, following Félix Guattari, describes as the “molecularization” of life in the second half of the twentieth century.
1.Denoting our increasing reliance on psychopharmacological medicine and biochemical aetiology from the 1940s and onward, the molecular revolution may be traced and apprehended, I argue, in the literary works of those who were attentive to it, both before and after its appearance. Legible as responses to a progressively molecularised and psychiatrised state, these works-including Herman Melville’s “Bartleby The Scrivener” (1853), Aldous Huxley’s often satirical fiction and mystical, mescaline-inspired essays, and Philip K. Dick’s so-called “anti-psychiatric” fiction-fabricate what I propose are a series of exemplary and heterodox biopolitical imaginaries, as useful to current problematics in the philosophy of science as they are important to contemporary literary studies 2.
(Supervisor: Peter Marks, Department of English)
1. See Nikolas Rose, The Politics of Life Itself: Biomedicine, Power and Subjectivity in the Twenty-First Century (Princeton: Princeton University Press, 2007), 15, 44; cf. Bruce Braun, “Biopolitics and the Molecularization of Life,” Cultural Geographies 14, no. 1 (2007): 6-28.
2. See Christopher Palmer, Philip K. Dick: Exhilaration and the Terror of the Postmodern (Liverpool: Liverpool University Press, 2003), 147.
Species body imaginaries: Xenotransplantation, infection and national imaginaries of the (non)human
This project explores the ways that the regulation of xenotransplantation (animal-to-human transplantation) is intertwined with the (co)construction or cultivation of ‘the human’ and ‘the animal’, as well as with projects of nation making. Drawing on Feminist STS, Animal Studies, and contemporary biosecurity literature, it traces the interconnections in the ways that 'the human' and nation are imagined and attempted to be secured - in xenotransplantation regulation and other kinds of national or global imaginaries, such as public health and and tourism campaigns. It explores the specificities of these connections across three different nations, with attention to associated power-apparatuses, and the hierarchically valued and embodied lives of various animals including humans and pigs.
(Supervisor: Catherine Waldby)
Healthy Citizenship and school-based vaccinations
Dr Kellie Burns (Health Education and Professional Practice)
This program of research examines the types of knowledge produced and governed about vaccination in schools. It combines several collaborative research projects with colleagues in Australia and Canada. The first is a qualitative pilot study of the HPV/cervical cancer vaccination program, administered in secondary schools since 2007. The analysis focuses on the ways in which young women are positioned as consumers of health and as responsible post-feminist citizens with an investment in notions of freedom, choice and healthy citizenship. The second is a study of pre-service teachers’ knowledge and attitudes about HPV and sexual health and their framing of this content as ‘difficult knowledge’ in health curricula. The third project is a socio-historical study of the school-based vaccination from 1932 to present. Collectively the projects analyse the biopolitics of vaccination and the biopedagogies of shifting schooling cultures.
The event of HIV prophylaxis
Prof Mike Michael, with Marsha Rosengarten (Department of Sociology and Social Policy)
This project entails a long-term collaboration between Mike Michael and Marsha Rosengarten (Goldsmiths, University of London) and examines ethical and political dimensions of randomized control trials for HIV pre-exposure prophylaxis. Working within a process-oriented analytic (Whitehead, Deleuze, Stengers), the event of the trials has been addressed through a range of terms including expectation, assemblage, topology, qualitative thing/quantitative object and idiocy. This work is currently being gathered together in a book “Innovation and Biomedicine: Ethics, Evidence and Expectation in HIV” to be published by Palgrave.
The sciences of 'race-mixing' in the Portuguese-speaking Global South
Dr Ricardo Roque (REGS)
This research project aims at exploring the many ways through which conceptions of mestiçagem or ‘race-mixing’ were shaped as an object of the human sciences in the Portuguese-speaking world during the twentieth century. More positive views of race mixing have been considered to be a distinctive trait of twentieth-century Luso-Brazilian racial thought, vis-à-vis its Northern European counterpart. In this study, I intend to reassess this specificity comparatively, by following the circulation of scientific racial theories, practices, and material culture across a variety of metropolitan and colonial settings and networks. Thus the study will encompass not just the European and North Atlantic connections of Lusophone race science, but, principally, its multiple manifestations throughout the colonial and post-colonial world of the Portuguese ‘global south’: Southern Africa (Angola, Mozambique, Cape Verde); South America (Brazil); and South and Southeast Asia (Goa and East Timor).
Recovery and Identity
Dr Jen Smith-Merry, Faculty of Health Sciences
This project draws on work undertaken in Scotland to examine the way that the concept of ‘recovery’ as taken up in individuals’ lives and as implemented in policy and practice necessitates a reconceptualisation of self in relation to mental health. This work brings together critical policy theory and governmentality in order to explore how particular recovery ‘technologies’ act on individual identity.
Safety, Self and Mental Health
Dr Jen Smith-Merry, Faculty of Health Sciences
This project focuses on the concept of safety as a contested concept in mental health literature and services and examines the meaning of safety for different individual and organisational actors within mental health. The issue of safety is an important one for a range of actors across the ‘mental health system’ including consumers, practitioners, carers, policy makers and the general public. However there is evidence that the safety concerns for consumers and each of the other stakeholder groups may be different and ‘safety’ may thus be differently understood across the mental health system. This means that policy and service decisions may be ‘safe’ for one set of actors, but not another, creating significant ethical problems for the regulation and operation of mental health services. Despite the difficulty of these ethical issues and the significant place ‘safety’ plays in the rhetoric of mental health legislation, policy and practice there has been very limited academic work on this theme. This project addresses this gap in our knowledge and examines the concept of safety within the context of the Australian mental health system through interviews, focus groups with consumers, carers, policy makers and practitioners, and documentary analysis of media, policy documents, legal findings and other relevant texts.
‘Mothers’ concepts and experiences of health and illness in their young children’
Dr. Deborah Lupton (Honorary Associate, SSPS)
Mothers and children are focal points of attempts by experts and government agencies to regulate, normalise and discipline the child’s body. Children have become a central site for the expression of concern about risks in contemporary western societies, and their mothers are charged with primary responsibility to identify, manage and minimise risks for their children. This study, funded by the ARC, [ARC Discovery Grant ‘Women’s concepts, beliefs and practices related to the health of their infants and young children: a sociological study’ ] investigates the ways in which mothers of young children living in Sydney conceptualise and experience health and illness in their children. Based on in-depth interviews with 60 women, the study seeks to identify what actions they considered important in promoting and maintaining the optimal health and development of their children, how they went about putting this into practice, what risks they saw as potentially affecting their children’s health, upon which sources of information they drew and how they responded to illness in their children. Theoretically, I am drawing from the sociologies of the body, health and illness, childhood, the emotions and risk society to explore the sociocultural context of the women’s concepts and experiences. Thus, for example, I am interested in the ways mothers’ responses to illness in their children and to the burden of tirelessly caring for them and monitoring their health in the attempt to conform to the ideal of the ‘good mother’ may be fraught with negative emotion in ways that are rarely acknowledged.
‘Precious Bodies: Theorising the Child’s Body in Late Modernity’
Dr. Deborah Lupton (Honorary Associate, SSPS)
Related to and emerging from my project on mothers’ concepts and experiences of health and illness in their young children is this theoretical analysis of the ways in which the child’s body is conceptualised in late modern societies. I am exploring such concepts as those of the ‘unfinished body’, the fluid body, the emotional body, the ‘at risk’ body and the disciplined body in relation to children, drawing, for example, upon Foucauldian writings on governmentality, feminist scholarship on abjection and fluidities, work on the emotional and embodied dimensions of pedagogy, and writings on risk society, individualisation and reflexivity.
Clinical Labour: Tissue Donors and Research Subjects in the Bioeconomy
Melinda Cooper and Catherine Waldby (SSPS)
This project focuses on the relationship between tissue donors, human research subjects and bioeconomic development. We argue that while the rhetoric of altruistic donation and participation still frames the bioethical and legal regulation of these activities, they are nevertheless increasingly organized through transactional recruitment, and along the lines of informal labour. This book will both provide an up to date empirical account of the emerging global bioeconomy and reconceptualize the key terms and debates through which it is understood in sociology, law, political economy, bioethics and business studies. Our study will also open up new lines of inquiry in sociological research, because it will bring together the social analysis of the life sciences with the rapidly developing field of post-Fordist labor studies, two areas that currently have no point of contact. This project has already produced four journal articles and our book proposal, Clinical Labour: Tissue Donors and Research Subjects in the Bioeconomy is currently under consideration by Duke University Press.
The Globalization of Clinical Trials, with a particular focus on China
Melinda Cooper and David Bray (SSPS)
This research investigates the off shoring of clinical trials to transitional and developing economies, where pharmaceutical companies can secure low cost clinical expertise and populations of trial participants who are both treatment naïve and readily recruited through low fees and/or the promise of free health care. This research was initially supported by a Faculty research grant, and has produced a published article 'Experimental Labour - Offshoring Clinical Trials to China' EASTS 2009. An external grant to continue support of this work is in the planning stage.
The ‘biologization’ of security in the 'War on Terror': political implications
Charlotte Epstein (SSPS)
The proclamation of the ‘War on Terror’ has both accelerated and legitimised governments' increasingly turning to science and technology to provide solutions for securing their populations against the threats of terrorism. The effects of this celebration of the power of science and technology to achieve the security objectives of the nation-state has been to profoundly depoliticise the field of security (by turning it into a ‘technical problem requiring a technological solution’), as well as to create a marriage of convenience between the state and science experts interested in securing the resources for the development of their sciences. It has tended to dull the critical voices cautioning against the political repercussions of such a turn, notably in terms of the costs to the individual rights and liberties of the populations thus ‘secured’. This research, based in the discipline of International Relations, and more specifically in the field of Critical Security Studies, focuses specifically on the political implications of the increasing use of biometric technologies by governments around the world to control the flow of people across the borders.
Turbulence - On Ecological and Financial Crisis
Melinda Cooper (SSPS)
This research explores the convergence of ecological and financial turbulence in the current political conjuncture. It investigates a series of interlinked developments in the areas of environmental politics and biosecurity, including: projects for a green new deal as part of global stimulus packages in response to the financial crisis and climate change; the financialization of environmental risk through global capital markets; the expansion of traditional security concerns to include both biological risks (emerging infectious disease, pandemics, bioterrorism) and environmental risks (climate change and its potential effects). The work on the financialization of environmental risk is being carried out with Professor Dick Bryan.
Affective Climates of HIV Prevention
Kane Race (SOPHI)
This study will explore the role of affect in health service provision, with a particular focus on stigma, public health, and HIV treatment and prevention. While the reduction of stigma has long been acknowledged as an important component of heath promotion and health service provision in these areas, there has been little specific exploration of the relation between various affects (fear, disgust, shame, pride, enjoyment) and engagement with health services, and on stigma itself as productive of different affects. This project will draw on cultural studies of affect, science and technology studies, and governmentality studies to conceive how different technologies of government, medicine and information produce specific affects, and to theorize the relation of these to public health.
Crime Scenes: Forensics and Aesthetics
Rebecca Scott Bray (SSPS)
This project is located at the intersections of medicine, law and criminology. It investigates the management of the dead in contemporary law, culture and forensic medicine; injury interpretation in law and medicine (examining issues of biomechanics, biophysics and other medico-legal expertise regarding the body and death scenes); ethics and the dead, focusing on issues of anatomy and human experimentation; the coronial jurisdiction and contemporary law reform, and the modernisation of the role of the coroner and contributions of forensic pathology towards death prevention, including genetic disease information provision in addition to the broader social benefits of medicine. It will be published as a monograph, forthcoming with Routledge-Cavendish, Discourses of Law series.
Global Sciences of Life: T.H. Huxley and Julian Huxley in Imperial and International Worlds
Alison Bashford (SOPHI)
This project examines the emergence of modern life science through a biographical study of two key science communicators, TH. Huxley and Julian Huxley, grandfather and grandson. It aims to elucidate the impact on their science of the different geopolitical worlds in which they functioned: T.H. Huxley, Darwin’s great public advocate, worked within a scientific and political world of nineteenth-century high British imperialism; Julian Huxley, biologist and creator of the new Darwinian synthesis, functioned as an ardent and active internationalist, first Director General of UNESCO, and of WWF, for example. Through the two figures, the project compares changing conceptions of the relation between humanity and nature, the nature of human difference, the integration of left politics into biology, the emergence of ecology, and projects of human biological improvement and transhumanism.
Biopolitics: A Critical Analysis
2 year project, resulting in a research monograph on the concept of biopolitics. The book will provide a critical overview of the main theorists of biopolitics, including Agamben, Arendt, Esposito, Foucault, Rose and Rabinow, to introduce readers to the field and explore some of the complexities and problems in the literature. It will also develop an original interpretation of biopolitics that focuses on the role of reproduction in theorizations of politics and state power. Advance contract from Acumen Press, due June 2011. Associated with this project, Mils is organising a research workshop, called “Securitizing Life” in November 2009, for which she will be hosting Professor Michael Dillon (Lancaster University).
Futures of Reproduction: Biopolitics, Subjectivity, Responsibility
Research monograph that uses recent work in biopolitics and feminist theory to challenge the conceptions of embodiment and ethical subjectivity utilised in contemporary bioethics. Through philosophical analysis of debates on human enhancement, procreative beneficence and selective abortion, this monograph proposes a new conception of responsibility that it more attentive to the way that social norms contain and construct possibilities for living in relation to (political) technologies of reproduction. Advance contract from Springer Press.
The Promise of Prometheus
Professor John Rasko (Prince Alfred Hospital and Centenary Institute) and Dr Carl Power (Centenary Institute and The University of Sydney)
Breakthroughs in stem cell research, cloning, gene therapy, cell reprogramming and other areas of regeneration research often grab media attention and provoke controversy. Unfortunately, mainstream debates on such topics tend to be narrowly focused and ill-informed. Since public opinion has a considerable impact on policy-making, it is vital that the community gain a better understanding of regenerative medicine, its basic concepts, its history, its social significance, and its future prospects. John Rasko and Carl Power aim to improve the quality of public debate by writing a brief, broad-ranging, accessible and engaging book, The Promise of Prometheus, about the history of regeneration research and medicine. It will explore this history in some depth while identifying those events and ideas that continue to be relevant today, shaping not just the way we practice science and medicine, but the way we think about ourselves as individuals, as community-members, and as human beings.
Emergent Studies of Science and Technology in Southeast Asia
Double Issue of the East Asian Science, Technology, and Society: an International Journal, Vol. 3, no.2 & no.3, 2009. Guest Editors: Warwick Anderson (Arts/Medicine), Suzanne Moon, Sulfikar Amir
Simulated government, monetized risk
Pat O'Malley (Law)
Risk has advanced in many fields through its capacity to be monetized – social and private insurance are primary examples in which risk flows through monetary circuits, allowing for the redistribution of (compensation for) biopolitical harms. This operates equally in insurance-linked fields such as tort law and contract law. Much the same may be said of fines and licences, where a preventive-pricing risk logic is more to the fore. This investigation explores the ways in which ‘security’ and ‘justice’ are being reshaped through such processes, as in the emergence of the simulated governance of traffic risks – where offences, offenders, risks, sentences and the expiation of sanctions are digitized and disposed of telematically.
Pat O'Malley (Law)
Resilience has been explored as a governmental property of economies, environments, governments and states. This project explores the ways in which resilience has been constituted at the level of subjectivities, in particular through developing programs of cognitive behavioural therapy. The first stage of the research has focused on military resilience, particularly the impact of network-centric warfare on imaginaries of ‘character’ and ‘fortitude’. Such work has suggested that new formulations of ‘resilient’ subjects are linked to an expectation that individuals must face and manage historically unprecedented levels of uncertainty. Current research is investigating the ways in which this appears in new managerial and self-help ‘pop psychology’ literatures, and how these are linked to theory and research in cognitive behavioural psychology.
On the Spectrum: Maternal Experiences of Autism Diagnosis and Early Intervention in Metropolitan Australia
Rozanna Lilley (SSPS)
This research investigates the experience of mothers in metropolitan Australia who have a child diagnosed with autism spectrum disorder (ASD), focusing on a) the identification and diagnosis of autism and b) early intervention services and therapy choices. Through a mixture of fieldwork and qualitative interviews, this ethnographic research aims to move beyond the necessarily individualised focus of clinical medical studies of ASD. My framework is the shared social world experienced by children with autism and their families, and, in particular, the everyday experiences of mothers as they live with and respond both to bureaucratic processes and the needs of their autistic child. My research thus investigates the conflict and collusion between professional and maternal discourses and practices as various agents and agencies interact with families.
(Im)Mobile Identities: The Institutional Self and its Embodied Discontents
Dr Gavin Smith (Sociology and Social Policy)
The intensification and diversification of technologically-facilitated surveillance in recent decades has been one of the defining features of social organisation and orchestration, with CCTV cameras, loyalty cards, body scanners, DNA swabs, RFID tags and internet cache cookies becoming relatively unexceptional and naturalized features of western democracies. Surveillance systems function to make particular phenomena discernible and identifiable, usually in order to serve the interests of data-hungry social and commercial institutions, who gather data and then apply complex analytical formulae and protocols in a bid to classify and sort information, label and categorize abnormalities and identify particular patterns for pre-emptive intervention. This research explores the cultural circuitries in which surveillance systems are embedded and the emergent post-humanism cultivated by surveillance-subject interplays. In particular, the project focuses on the emergence of ‘digitalised selves’, the re-assembled fragments of data routinely extracted from and volunteered by individuals at strategic transactional ‘points of contact’. The organisationally situated mobility and versatility of such quasi-identities is remarkable, as they increasingly and unproblematically hurtle across institutional databases and the globalized ether. This mobility is connected both to economic and political desires to better know the habitus of social actors for strategical decision making. The issues raised as a consequence of such networked mobility and the degree to which these organisational abstractions relate to the situated experiential narratives of embodied subjects, is what forms the major thrust of the study.
Commercialising the stem cell sciences
Olivia Harvey (SSPS)
This is a book project focused on the comparative analysis of commercial models adopted in the global stem cell industries, focusing on case-studies of publicly available information about different companies around the world working on adapting stem cell technologies to market. Promising new developments in biomedical technology like stem cell science are widely endorsed by governments keen to reduce spiralling healthcare costs, clinicians focused on patient care and patients demanding revolutionary new treatments. Operating at the intersections between governments, healthcare settings and community demand, companies are operating to secure a profit in a global marketplace. This book explores some of the issues emerging as stem cell based therapies start to enter the marketplece.