PhD Thesis by Mikka Nielsen: Experiences of ADHD in Adults. Morality, Temporality and Neurobiology
This thesis is an examination of adults’ experiences of ADHD. It is a study of life with ADHD, embodied experiences of ADHD, the implications of being diagnosed with ADHD, and ways of relating to the diagnosis. The number of people diagnosed with ADHD has increased within the last couple of decades and so has the number of prescriptions for drugs treating ADHD. We know, however, only little about the effects of diagnosing and about phenomenological aspects of ADHD. By analyzing how individuals experience symptoms of ADHD, interpret themselves through the diagnosis, and make use of the resources following the diagnosis, this thesis is a contribution to a limited literature on adults’ experiences of ADHD.
The study is entirely qualitative. The analyses are based on data from interviews, conversations, and from time spent with 13 adults diagnosed with ADHD in adulthood (five men and eight women, ages 26-45); on observations at doctor’s consultations; conferences for people diagnosed with ADHD, their relatives, and professionals working with ADHD; and finally from observations at online forums about ADHD. All research is conducted in Denmark. Following phenomenological and anthropological research on illness experiences, the study comprehends experiences of ADHD as embedded in social and cultural contexts. Hence, it is a general argument in the thesis that experiences of ADHD unfold in relation to social relationships, family struggles, cultural explanations of suffering, and contemporary expectations of being human. Within our specific culture and place in time, certain ways of being in the world and certain ways of understanding oneself are available. In this context, experiences of ADHD are intertwined with the desire of being a good parent, of wanting to navigate in society, of keeping a job, of maintaining friendships, and of being accepted.
The thesis is organized into ten parts: six chapters that set the introductory frame, three articles about adults’ experiences of ADHD, and finally a conclusion.
In the first six chapters, the thesis presents different sociological, historical, and psychiatric perspectives on the emergence of ADHD as a diagnostic category, research on explanations of psychiatric diagnoses, and theories about medicalization of behavior and biologization of mental illness. A literature review of research on adults’ experiences of getting an ADHD diagnosis demonstrates how being diagnosed with ADHD involves changes on the individual’s self-understandings as well as ambivalence towards the diagnosis. Finally, a description of the theoretical, methodological and methodical background of the study is presented.
The first article ”Structuring the self: moral implications of getting an ADHD diagnosis” examines the formative process of getting an ADHD diagnosis and how individuals diagnosed with ADHD use the diagnosis as a part of a self-evaluative and self-constitutive project. The article illustrates how a diagnosis offers a certain narrative, into which the individual’s life-trajectory is interpreted. Moreover, it is described how new everyday practices and routines are changed following the diagnosis, and how medical treatment changes the individual’s way of perceiving
and being in the world. These processes of understanding, making use of and experimenting with the opportunities offered by the diagnosis reflect different moral tasks, it is argued, concerning the act of taking responsibility, learning how to manage difficulties in life, and of striving to become a good parent, friend, and partner.
The second article “ADHD and temporality: a desynchronized way of being in the world” examines embodied experiences of ADHD. The article explores how to understand ADHD from a phenomenological perspective as a certain being in the world and as a matter of phenomenological difference in rhythm. It is argued that people with ADHD experience time differently than others, and when inner time accelerates in relation to outer time, a desynchronization occurs. This situation of desynchronization may result in discomfort and experiences of social clashes. The article emphasizes the intersubjective and intercorporeal aspects of ADHD and it is suggested that ADHD is not only an individual phenomenon, but symptoms of ADHD appear in relations, clashes, and interactions.
The third article “My ADHD and me: identifying with and distancing from ADHD ” examines how individuals diagnosed with ADHD relate to ADHD. The study presents two positions of how people diagnosed with ADHD understand themselves and their actions based on neurobiological explanations of ADHD. The first position involves identifying with ADHD as a way of being human and a specific way of managing (and failing to manage) life based on certain neurological structures in the brain. The second position involves distancing from ADHD by separating the self from ADHD, transferring ADHD into an entity, explaining ADHD as caused by neurochemical impulses, and disclaiming behavior connected to ADHD. Lastly it is discussed how the neurobiological explanation of ADHD reduces comprehensions of how to live with ADHD and options for coping with the difficulties ADHD brings about.