Experiences and Explanations of ADHD

An Ethnography of Adults Living with a Diagnosis

Mikka Nielsen

• Editorial: Routledge
• Año: 2019
• ISBN:
  9781351392402
• Edición: 1
• Categoría: Psychologie
• Categoría: Sozialpsychologie

Experiences and Explanations of ADHD: An Ethnography of Adults Living with a Diagnosis presents research on the lived experiences of those diagnosed with attention deficit hyperactivity disorder (ADHD). Drawing on in-depth interviews with adults diagnosed with ADHD, the book provides an examination of how the diagnosis is understood, used, and acted upon by the people receiving the diagnosis.

The book delves into the phenomenology of ADHD and uncovers the experiences of a highly debated diagnosis from a first-person perspective. It further considers these experiences within the context of our time and culture and contributes to a discussion of how to understand human diversity and deviance in contemporary society. Studying both societal conditions behind the emergence of ADHD, questions concerning everyday life with ADHD, and interpretations of the diagnosis, the book offers an analysis of the intertwinement of experiences of suffering and diagnostic categories.

This book will appeal to academics, researchers, and postgraduate students in the fields of cultural psychology and medical anthropology, as well as those with an interest in the sociology of diagnoses.

Chapter 1

Introduction

When I first met Karen, one of the first things she said to me was, “I am hyper on my speech”. Karen is 45 years old and was diagnosed with attention deficit hyperactivity disorder (ADHD) at 41. She agreed to be interviewed by me about her experience of living with ADHD, how symptoms of ADHD affect her everyday life, and what changes the diagnosis has brought about. Karen is an enthusiastic storyteller and she talked from the moment I switched on my digital recorder until the end of the interview, four hours later. From east to west, from one incident to another, and from yesterday’s laughter and back to some of the darkest times in her life, Karen took me on a tour into her experiences of ADHD. Sometimes Karen lost track of her story and I needed to remind her where she started, but my interview questions were almost unnecessary as Karen honestly, figuratively, and humorously introduced me to her life with ADHD, a diagnosis she was given after numerous doctors’ appointments and endless nights of speculations. Karen has struggled most of her life: in school, with her family, and at work. She has never kept a job for a long period of time, and has been in more relationships than most people. Karen’s story whirled me into a life of disappointments when expectations from other people have not been met, when misunderstandings have ruined relations, and when family fights have torn her to pieces, but it also tells me about a life of managing to keep a family together against all odds and about a life where she is slowly beginning to find her footing.

I had just started my research project about ADHD a couple of months before I met Karen. And since ADHD was still an unexplored field for me, I asked her how she would explain what ADHD is to someone who does not know about the diagnosis. The picture she painted of ADHD as a clash of expectations and a life of constant challenges has stuck with me ever since:

It is like approaching a candy vending machine, putting a dollar in it, and pressing “Daim” [chocolate bar]. And then you expect a Daim to snarf, but instead a boxing glove comes out, “boing”, giving you a box on the ear.

To Karen, ADHD is about being different, about following a different logic, and about acting and speaking differently – and occasionally being knocked out for it. Like the boxing glove hitting her from out of nowhere. She once attended a seminar hosted by the Danish ADHD Association, where a presenter talked about speaking ADHD’ish, and she was thrilled to finally meet someone expressing so clearly what she had always believed: that she was somehow speaking another language. That she was simply always on the edge of how other people expressed themselves and experienced the world. Life with ADHD is a constant encounter with clashes and misunderstandings when different ways of thinking and acting collide, Karen tells me. Sometimes she manages to fit in and live up to the expectations of others. To behave according to other people’s perception of what is appropriate. “I seem calm to you, right? But I can damn right promise you, I am not,” she says, explaining how she twists her legs around the legs of the chair and keeps her arms crossed in front of her chest in order to keep herself restrained. “The whole body is locked.” She knows that her restless movement, when she tries to ease her “craving for being hyper” is disturbing to others, and thus instead of moving her legs and fidgeting with her hands, she limits her cravings for movement by locking her body. This is her one of her strategies for adapting to other people’s expectations. At other times, life hits her like a boxing glove. Karen has the courage of her own convictions, and sometimes she stands firm on her way of doing things differently, unaffected by the consequences. Then she is prepared for the boxing glove to hit. At other times, the boxing glove comes out of the blue.

Karen has always felt detached from her peers, but only after her daughter was diagnosed with ADHD and Karen started reading about the diagnosis, did she realize why. Karen was in the middle of a dramatic and evaluative time in life when she was diagnosed and she was struggling to hold her family together and keep custody of her children. She was in a legal fight with the father of her children and her relation to her mother was like an open wound. “I was tearing down and building up my life and I was reaching the point of being stuck, something needed to be done, but what the heck was I supposed to do?” After being rejected by several doctors who explained her difficulties as existential problems and left her by herself, Karen finally met with a psychiatrist who acknowledged her need for support and she got the ADHD diagnosis. Karen describes herself as someone who has always developed strategies in order to manage her difficulties, but at this time in life, she needed new strategies. The diagnosis became the help she was longing for and it facilitated a process of reflection that enabled her to understand herself in new ways. Medication following the diagnosis has been a great help that she says gives her “calmness and breaks for me to learn”, and consultations (financed by herself) with a psychologist, who specializes in ADHD, help her “because he puts things into words”. “A handicap,” Karen tells me, “is when you do not understand, when the surroundings do not understand, and when no one is trying to explain”. In that perspective, a diagnosis is the explanation that mitigates the handicap. It becomes the mediator between the clinical setting and life experiences and the translator, between the individual and his or her surroundings. It does not eliminate every experienced problem, but it helps you understand the clashes of everyday life and develop strategies for limiting conflicts and experiences of failure.

Karen’s story is one of 13 life stories about ADHD I have listened to as part of my research on ADHD. All the 13 stories include unique lives and experiences in which ADHD plays a particular role. A small glimpse into Karen’s story about ADHD illustrates elements of why and how some handle their problems through the help of a diagnosis and elements of what changes a diagnosis potentially brings about. Together with the additional 12 stories, Karen’s story offers an insight into the complex lifeworld of restlessness, hopes, disappointments, and struggles connected to life with ADHD.

Aim of the book

This book is an examination of adult life with ADHD, embodied experiences of ADHD, the implications of being diagnosed with ADHD, and ways of relating to the diagnosis. Its ambition is to offer a nuanced insight into ADHD by presenting individual stories about ADHD and contextualizing these into a broader academic discussion about the increase in psychiatric diagnoses in general and the emergence of ADHD in particular. The book is concerned with questions such as, how can we understand experiences of racing thoughts, the head speeding, chaotic thinking, and bodily sensations of electricity running through the limbs, of thoughts jumping from subject to subject, and a continuous struggle for concentrating and sitting still? The American Psychiatric Association characterizes experiences like these as ADHD, which it categorizes as a neurodevelopmental disorder that comprises symptoms of inattention, hyperactivity, and impulsivity. In large numbers, people are diagnosed with ADHD and adults increasingly receive the diagnosis that was previously considered a diagnosis for children. But how do individuals experience getting an ADHD diagnosis as an adult and how is the diagnosis understood, used, and acted upon? Examining questions about the bodily experiences of what we call ADHD and the experiences of getting the diagnosis is the purpose of this book. It is an attempt to delve into the phenomenology of ADHD and unfold experiences of a highly debated diagnosis from a first-person perspective, and to understand these experiences within the context of our time, culture, and ways of understanding the human being. Studying both societal conditions behind the emergence of ADHD and questions concerning everyday life with ADHD and interpretations of the diagnosis, the book offers an analysis of the intertwinement of experiences of suffering and diagnostic categories, and contributes to a discussion of how to understand human diversity and deviance in contemporary society.

ADHD is a complex phenomenon and a relatively new psychiatric diagnosis. To understand what symptoms of ADHD feel like, why a growing number of people are diagnosed, why some people wish to be diagnosed, what explanatory force the diagnosis entails, and how it is received by the diagnosed, we need to address ADHD from multiple angles. The book will offer historical, sociological, psychiatric, and first-person perspectives on ADHD that collectively will create an assemblage of stories about the condition and hopefully contribute to an understanding of the complexity of ADHD and how to understand it as a disorder existing in time, place, and within social relations. My primary aim, however, is to present stories about life with ADHD, about experiences of struggling with a chaotic mind and a restless being, and about getting an ADHD diagnosis that describes these experiences. Research on adults’ experiences of ADHD is limited, and considering the amount of psychiatric literature on psychopharmacological treatment, prevalence, and neurological aspects of ADHD, and of sociological literature on medicalization and the emergence of ADHD as a diagnostic category, the lack of research on how people experience living with ADHD is striking. We know very little about the effects of diagnosis and phenomenological aspects of ADHD as a way of experiencing and being in the world. I hope this book can go some way to remedy this lack and contribute to a hopefully emerging field of research on adults’ experiences of ADHD. The aims of the book are therefore:

• To outline different explanations of the emergence of ADHD and the increasing numbers of people diagnosed with ADHD.
• To examine the impact of being diagnosed and how adults diagnosed with ADHD make use of the diagnosis when understanding themselves and their difficulties.
• To unfold an alternative perspective on how to understand experiences of ADHD in our time.

A diagnosis of our time

ADHD is, in many ways, a diagnosis of our time. Over the past decades, ADHD has been scrutinized, recognized, criticized, and treated in the Western part of the world, and the condition is linked to relevant questions concerning employability, insurance, and risk for accidental injury (Hinshaw & Scheffler, 2014, p. 132). From an anthropological point of view, focus on problems with attention interestingly reflects what we consider as deviant, inappropriate, and inadequate in our time – and maybe even how attention has become a scarce resource that is invested in and competed for (Kristensen, 2008). In an accelerating society with high performance criteria and with technologies constantly calling for our attention, an increase in the number of people diagnosed with ADHD requires an analysis of the dynamics between experienced symptoms of ADHD and societal developments.

The number of people being diagnosed with ADHD has increased rapidly since the diagnosis first entered the diagnostic manuals. We have also seen an increase in the number of prescriptions for drugs to treat ADHD. Teachers, psychologists, counsellors, and general practitioners refer people to psychiatric evaluations, but people also increasingly self-diagnose based on Internet tests, and actively visit their doctor in order to obtain an ADHD diagnosis (Conrad, 2007; Rafalovich, 2004). In my home country of Denmark, with a population of only approximately 5.6 million, the number of people prescribed drugs to treat ADHD has increased from 2,901 in 2002 to 35,554 in 2011, corresponding to a 1.125 per cent increase (Statens Serum Institut, 2012). In particular, adults represent a larger number in the statistics. While almost no adults were diagnosed with ADHD in 2001, 3,000 adults were registered as diagnosed with ADHD ten years later, and only within a three-year period, from the end of 2009 until the end of 2012, the number of adults receiving pharmaceutical treatment for ADHD has doubled (Statens Serum Institut, 2013). Newly revealed numbers of people in pharmaceutical treatment for ADHD in Denmark, however, indicate that the curve is flattening out (Sundhedsstyrelsen, 2015), and it will be interesting to see whether this reflects a new tendency. Nevertheless, a large group of people have been diagnosed with ADHD within the last couple of decades, and the diagnosis has not only spread within countries. The increase of people diagnosed with ADHD in Denmark echoes a general trend in Western countries, which some scholars describe as a “globalization of ADHD” (Conrad & Bergey, 2014) or even an “ADHD explosion” (Hinshaw & Scheffler, 2014). This research demonstrates that in countries such as Canada, the Netherlands, Germany, and Norway, rates of people diagnosed with ADHD have grown rapidly, despite varying diagnostic and treatment practices. These tendencies seem to be facilitated by several vehicles ranging from a transnational pharmaceutical industry, active advocacy groups, a competitive economic climate, to a general preoccupation with performance in educational and work settings.

Due to the increase in people diagnosed with ADHD within the last couple of decades, and to the migration of the diagnosis across countries, ADHD receives great public attention. As noted by sociologist Adam Rafalovich (2004), contemporary discussions about ADHD are represented by a plurality of both academic, clinical, pop-cultural, and journalistic views. The diagnosis is considered in TV shows, newspapers, and is heavily debated among professionals and laypeople. Famous actors, musicians, comedians, and business personalities have announced that they have been diagnosed with ADHD, and some even connect genius features in historical characters like Abraham Lincoln, Isaac Newton, and Socrates to ADHD (Schwarz, 2016). The diagnosis has become a category to identify with and that entails both positive and negative connotations. However, although some people succeed in transforming restlessness into accomplishments, most people diagnosed with ADHD experience severe difficulties and consequently seek medical advice (Hinshaw & Scheffler, 2014, p. 25). Treatment of ADHD is therefore also a hot topic in public discussions about ADHD and the dramatic rise in prescribed Ritalin and other central nervous stimulants has hit the popular media. In Denmark, headlines have brought massive attention to the diagnosis: “New Shock Numbers: 38,000 Are Taking ADHD Medication”¹ (Ritzau, 2013) and “Explosion: Adults on ADHD Medication...

Índice

• Cover
• Half Title
• Series Information
• Title Page
• Copyright Page
• Contents
• Series editor’s introduction
• Preface
• Acknowledgements
• Chapter 1 Introduction
• Chapter 2 An old disorder or a recent product of medicalization?
• Chapter 3 What is a diagnosis?
• Chapter 4 Experiences and implications of getting an ADHD diagnosis
• Chapter 5 Explaining and making use of an ADHD diagnosis
• Chapter 6 ADHD as a temporal phenomenon
• Chapter 7 Conclusion
• Index