Remembering Turbulent Times: Accounting for Adult ADHD through the reconstruction of childhood Claude Jousselin Department of Anthropology, Goldsmiths, University of London A thesis submitted in accordance with the requirements for the degree of doctor of philosophy in social anthropology. GOLDSMITHS, UNIVERSITY OF LONDON January 2016 P a g e | 2 I, Claude Jousselin, confirm that the work presented in this thesis is my own. Where information has been derived from other sources, I confirm that this has been indicated in the thesis. P a g e | 3 Acknowledgements ADHD remains contested, controversial and is not easily disclosed due to the risk of stigmatisation; my first thank you is therefore to the support group members and their facilitators who allowed me to attend their meetings month after month, and who responded to me with curiosity and unfailing generosity. In particular I am grateful to Susan Dunn Morua from AADD-UK who supported my research proposal early on in the process and to Andrea Bilbow from ADDISS who gave me the opportunities to participate in their conferences. Similarly I want to thank the staff and patients of the specialist clinic I attended for allowing my presence in their office and observing their assessments as well as for enduring my naïve questions. My gratitude extends to the members of UKAAN and its President Phillipe Asherson, for supporting this research project and making it possible for me to gain access to scientific training courses and conferences. I want to thank Utpaul Bose for sharing his insightful understanding and passion early on in my project. This research was awarded ethical approval from the Health Research Authority, NRES reference 12/LO/0417, and from the NHS trust, approval number R&D2012/073. I am very grateful to the Economic and Social Research Council (ESRC) for funding this project and for the training and networking opportunities it offered me. In particular I want to thank Vololona Rabeharisoa and Madeleine Akrich from the EPOKs research project, Rachel Thomson and the New Frontier QLR network, Michael Morrison and peers from the Sociology of Diagnosis seminar series and Jane Macnaughton along with the Medical Humanities New Generation cohort for providing a stimulating, engaging and inspiring environment at different times during this project. I would like to give a special thank you to my supervisor, Sophie Day, who nurtured critical and balanced thinking in our conversations, leaving no concepts unturned and who challenged me to produce the best that I could. I also extend my thanks to the many members of Goldsmiths’ Anthropology department who have inspired me through their teaching, research and conversations, not least Rebecca Cassidy and Victoria Goddard for their attentiveness and support as P a g e | 4 well as Nicholas De Genova, Emma Tarlo, Pauline von Hellermann and Martin Webb for their helpful suggestions towards my pre-fieldwork report and upgrade to PhD. My thanks also go to my PhD peers for their feedback and support in seminars and debriefs: Will Tantam, Katie Aston, Aimee Joyce, Magda Buchczyk, Alena Oaka, Alex Urdea , Stephanie Grohman, Jasmin Immonen, Souad Osseiran and William Wheeler. I also need to mention, without naming them as the list would be too long, all the composers and musicians whose music has played a central role in my life and has helped produce a conducive environment for my writing. My PhD adventure would not have been possible without the support and help of those close to me; thank you to Jimmy and Lauren for their continuing enthusiasm, to Liz for the summer residency that made the final writing a pleasure and to Gil whose erudition has been a great resource and source of joy; to Wally for keeping it real and Joan for sharing the ice cream. Aussi un grand merci à ma famille française qui me rappelle l’importance de penser autrement et de bien boire et manger. A Maman pour avoir toujours été présente, même en mon absence et à Papa pour m’avoir passé le plaisir de cultiver et de lire. Merci surtout à Tom et Lucille pour nos conversations philo-sociologique et pour toute la joie que vous apportez et partagez autour de vous. Above all, thank you to Helen for her patience, for making time and space in our busy lives for me to pursue my interest and for her emotional support and generous love. P a g e | 5 Abstract This thesis explores the diagnosis of ADHD among adults in the UK. The condition has only recently been defined as a lifelong disorder and extended from childhood to adulthood. Through ethnographic research in a specialist psychiatric clinic and with a patient organisation, this thesis traces the diagnostic process as it takes place in both sites and also between them. It highlights the role of memory practices in the many versions of ADHD that circulate. I outline clinical and lay practices of identifying ADHD. Individuals in the support groups identified with the diagnosis through recognising themselves in other people, as if in a mirror, which I describe as ‘moments of recognition’. In the clinic, the elicitation of medical histories brought contrasting memory practices to the fore, as patients sought evidence from their childhood necessary to a formal diagnosis. Although these memory practices appear distinct, they are combined in practice. This fieldwork led me to concentrate less on the potentially negative medicalisation of human experiences, the main topic of social science research in the field, than the ways in which memory practices were mobilised. These practices were key to the production of evidence-based diagnosis in the clinic and to collective archives in the support groups. Moreover, both types of memory practices informed wider relations. Thus, I explore unexpected ways of making kin such as the manner in which children, more commonly diagnosed with ADHD than adults, ‘made’ their parents in the light of a shared condition. Furthermore, concepts of neurobiology led some research participants to recognise strangers as ‘family’, linked by a common factor and celebrated as neurodiversity. This thesis attends not only to the emerging and mostly unexamined lived experiences of adults with ADHD, but it also contributes to an anthropological exploration of social and caring practices more broadly. P a g e | 6 Table of Contents Acknowledgements...................................................................................................................... 3 Abstract ....................................................................................................................................... 5 Table of Contents ......................................................................................................................... 6 List of Abbreviations and Acronyms .............................................................................................. 9 Chapter One: Introduction ..................................................................................................... 10 ADHD in adults .................................................................................................................................. 14 Medical and lay descriptions ........................................................................................................ 14 Demography .................................................................................................................................. 17 Multiple already ............................................................................................................................ 18 Is it real? ............................................................................................................................................ 19 Forces of medicalisation ............................................................................................................... 19 Materials and practices that shape realities ................................................................................. 20 The diagnostic process ...................................................................................................................... 22 A social process rather than clinical moment ............................................................................... 22 The role of remembering and of family resemblance .................................................................. 23 Methods and orientation .................................................................................................................. 26 Field sites ...................................................................................................................................... 26 Clinical site .................................................................................................................................... 27 Patient Organisations and Support Groups sites .......................................................................... 29 Words, voice and anonymity ............................................................................................................ 32 Thesis outline and chapter summaries ............................................................................................. 36 Chapter Two: ADHD from childhood to adulthood: how children stopped ‘growing out of it’ ... 39 Pushing back the history of ADHD .................................................................................................... 41 Working memory rather than textbook memory ............................................................................