Adolescents With ADHD: Experiences of Having an ADHD Diagnosis and Negotiations of Self-Image and Identity

Abstract

Objective: To develop an understanding of the meanings and consequences of a diagnosis of ADHD for young people during the transition from childhood to adolescence. Method: Nine youth with an ADHD diagnosis were interviewed using a semi-structured interview guide on topics of management of identity and their own experiences of their difficulties relating to ADHD. Results: The meanings and consequences of the ADHD diagnosis is best understood in terms of overall identity development and social connectedness. In addition, cultural understandings of what ADHD is play a major role in negotiating the role of ADHD in identity. Conclusion: Youth with ADHD moving from childhood to adulthood need support for identity development. Health care professionals should be aware of young people’s experiences of ADHD symptoms in the context of their life situations and the cultural understanding of ADHD during treatment and psychoeducation.

Keywords

ADHD adolescent ADHD age coping culture

Introduction

Ask not what kind of illness the patient has, ask what kind of patient has the illness.

—Attributed to Dr. William Osler

What does it entail for a young person to live with a diagnosis of ADHD? Children tend to initiate treatment based on their parents’ preferences (Fiks, Mayne, DeBartolo, Power, & Guevara, 2013), but then discontinue treatment as they reach adolescence (McCarthy et al., 2012; Zetterqvist, Asherson, Halldner, Langstrom, & Larsson, 2013). This suggests that important changes in the perceived need for treatment occur during the transition from childhood to adulthood (Zetterqvist et al., 2013). However, it is possible that these changes are associated not only with a changed perception of the medication, but also with the diagnosis or condition itself. But what can these changes be and how do they relate to the general developmental tasks associated with becoming an adult? And how do they relate to broader cultural developments?

The criteria for ADHD describe problems with inattention, impulsivity, and hyperactivity to a degree where they become problematic for the individual (Barkley, 2010). For society, ADHD represents a challenge in schooling young children, and the diagnosis has grown in part from problems in schools (Graham, 2006), in part from problems within families that dealt with disruptive children (Bussing, Schoenberg, Rogers, Zima, & Angus, 1998), and in part from discoveries in medicine (Bradley, 1937; Conrad, 1975). For families and patients, an ADHD diagnosis offers access to mental health services and may provide a possible explanation for the difficulties a person has been experiencing most of their lives. ADHD is conceived as a brain dysfunction (Barkley, 1997), and as such places the problems within the body of a particular individual.

The contemporary medical view places the brain as the center in which all human behavior and affect are produced (Frattaroli, 2001). In that sense, the brain, and by extension the mind, becomes closely tied to self-image and thus to a person’s personality. By being conceived as a brain dysfunction, ADHD becomes an understanding that is applied not only to the difficulties of inattention, hyperactivity, and impulsivity, but also in some sense to the person as a whole, to their self-image, and to their identity.

In that way, ADHD can be regarded as what Clarke, Shim, Mamo, Fosket, and Fishman (2003) call a technoscientific identity, that is, an identity that is produced through the application of sciences and technologies to our bodies. Technoscientific identities are by definition identities that are inscribed upon individuals. When young persons are referred to a doctor and diagnosed with a disorder, they have to relate themselves to the diagnosis, that is, an externally applied category and somehow come to terms with being placed in this category. As such these individuals have to be able to act and define themselves within a system or structure that categorizes them as individuals who lack certain abilities that are thought to be common for all normal human beings and as individuals who in certain ways are handicapped or flawed in their very constitution. Elaborating on Clarke’s theory by incorporating Charmaz’ (1995) theory of illness identities, Sulik (2011) describes how a technoscientific illness identity can work to increase a sense of control over experienced illness by applying biomedical information and characteristics directly to the person’s sense of self and thereby encourage the person to become the classification, for example, become a “hyperactive child” or an “autistic child.” This entails that parts of their self-image is not created through self-reflections about their differentness compared with others, but on an externally applied definition on this differentness. Becoming a classification does not happen in the instance one is classified as belonging to a certain diagnostic category. A person has to somehow be able to recognize himself or herself in the description offered by the diagnostic category and accept belonging to this category, as well as potentially make identity trade-offs, as they adapt to the limitations incurred by the disorder (Charmaz, 1995).

Most people who receive an ADHD diagnosis are diagnosed as children or adolescents (DeNisco, Tiago, & Kravitz, 2005). Adolescence is a period in life where the foundation of an identity is formed. The process of identity formation involves the adolescents questioning who they are, who they want to become, and where they fit into society (Erikson, 1968). In that sense, identity can be understood as the story one has to tell of oneself; the story of one’s past experiences, one’s present now, and the future one imagines for oneself (McLean & Pasupathi, 2010). The opportunities or lack thereof, with regards to education, social relationships, and so on, can to some degree limit the individual’s possible identity (Anderson & Mott, 1998) in the sense that identity formation is dependent on cultural, social, and environmental structures. In this regard, the adolescent has to cope with the societal expectations with regards to social and academic functioning to form an acceptable social identity.

Identity also involves self-image, that is, the way that an individual sees himself or herself. Since the early days of modern psychology, the interactive nature of self-image and self-worth has been a central focus (Cooley, 1902; Mead, 1934). While this view has developed in many ways, a central tenet of our understanding of identity and self-image remains that they develop through interactions with and relations to others (Hollway, 2010).

A qualitative study on the experience of receiving an ADHD diagnosis by Young, Bramhan, Gray, and Rose (2008) described how individuals who had been diagnosed with ADHD in adulthood went through a six-stage process before reaching an acceptance of having ADHD: (a) relief and elation, (b) confusion and emotional turmoil, (c) anger, (d) sadness and grief, (e) anxiety, and (f) accommodation and acceptance.

However, understanding how these processes interact with the personal and contextual situation of the individual is important. Nobody arrives at a diagnosis of ADHD without a personal history, a self-narrative and real-life experience. These real-life experiences will invariably include experiences of social relations to family members, peers and teachers, and experiences with one’s own ability to control one’s life circumstances. At the same time, a person receiving a diagnosis of ADHD has a lay understanding of what ADHD entails. Although ADHD is in fact a disorder with a very heterogeneous expression and as such comprises three different subtypes, the main cultural image of ADHD relates to the hyperactivity dimension of the disorder, and unfortunately, has been presented mainly in the media as relating to deviant and unruly children (Horton-Salway, 2011; Schmitz, Filippone, & Edelman, 2003).

The common representation of children with ADHD most often involves a description of socially inappropriate behaviors, and it is mostly the combined or hyperactive types that are presented in the media, while the core symptom of inattention and the inattentive subtype are neglected (Horton-Salway, 2011; Schmitz et al., 2003). Therefore, by being diagnosed with ADHD, the child or the adolescent may perceive themselves as becoming a member of a group that has a devalued status in society. Therefore, the addition of an ADHD diagnosis might for some be viewed as an application of a stigma (Goffman, 1974). As our self-esteem is to some degree dependent on the status of the groups we belong to, being diagnosed with ADHD might have a negative impact on the self-esteem of adolescents categorized as such, as identification with in-groups has been shown to affect self-esteem (Dietz-Uhler & Murrell, 1998). However, the impact on self-esteem might be modulated if the individual is able to change their perceptions of the group (Tajfel, 1981).

Narrative identity development concerns the way in which adolescents integrate their past and present and articulate and anticipate their futures (McLean & Pasupathi, 2010). At the same time, life narratives speak to the organization and structure of lives while explicitly addressing issues of context (McAdams, 1993). The questions of where we have been, where we are going, and how these are connected are answered in narratives, and these are well-suited for understanding the dynamic interplay and processes within the individual and between the individual and his or her micro- (e.g., family) and macro-environment (e.g., culture). Narratives of successes or failures, of loving or lack of love, of fitting in or falling out of social contexts, play a central role in how individuals cope with the diagnosis, and may shape how and why the diagnosis is rejected or accommodated into self-image and self-worth.

The aim of this study was to investigate ways in which adolescents relate to the externally applied category of ADHD and how they negotiate their identity and self-image in relation to being placed in this category using a case series based on qualitative interviews. The aim was not to identify common or general trends, but rather ways in which young people could relate to themselves and their diagnoses. To achieve these aims, in-depth analysis of a small number of cases can provide the necessary personal and social context to describe ways of handling identity tasks (Dreier, 2009).

Method

Exclusion and Inclusion Criteria

Inclusion criteria for the study were being between the age of 15 and 21 and reporting a diagnosis of ADHD given by a doctor (in practice, a psychiatrist or neurologist, see below). In addition, informants or their parents had to give consent to the study. The only exclusion criterion was having a history of drug use.

The decision was made to exclude adolescents with illicit drug use from the study because the comorbidity between ADHD and substance use disorder carries with it increased levels of other psychiatric disorders, such as mood and anxiety disorders (Wilens, 2004) and conduct disorder (Lee, Humphreys, Flory, Liu, & Glass, 2011), which might have complicated any analysis on the effects of ADHD on identity development. As no diagnostic assessment was made during the interview, the validity of the participants’ ADHD diagnosis rested in part on self-report, and in part on their recounting of the diagnostic process leading up to them receiving the ADHD diagnosis in the interviews. All participants had gone through extensive psychiatric assessment prior to being diagnosed with ADHD. According to Danish medical regulations, only psychiatrists or neurologists can initiate pharmacotherapy for ADHD, and diagnoses are given according to the International Classification of Diseases, 10th revision (World Health Organization, 1992).

Procedures

For the study, youth with ADHD was recruited through two sources. The initial approach was to recruit volunteers through the Danish ADHD Association who were kind enough to bring an advertisement in their newsletter calling for participants with ADHD for the study. Inclusion criteria included age (15-21 years) and no experience with illicit drugs. Six individuals (five females, one male) with ADHD were included in the study from this source. To bring up the number of participants, youth with ADHD (15-18 years and no experience with illicit drugs) were identified through self-reported ADHD diagnosis in the first part of an ongoing survey in four municipalities in Denmark with 1,975 participants by Donbaek, Elklit, & Pedersen (2014) and contacted by the first author. In the survey, individuals were asked if they had ever been diagnosed with ADHD by a medical doctor, and respondents were asked if they were willing to be contacted for further follow-up. Three individuals with ADHD were included from this source (two females, one male).

Sample

The nine participants in the study were seven girls and two boys in the age of 15 to 21 years. By their own account, five of the participants (all female) did not have any learning disabilities, whereas the remaining four either had had, or were still struggling with learning difficulties when they were interviewed. Age of initial diagnosis varied from 6 to 16 years. Therefore, some of the participants had become accustomed to their diagnosis, whereas others were still finding themselves in relation to the diagnosis. Four of the participants (all female) had initially gone through psychiatric evaluation because of depression, whereas the remaining had been evaluated because of their difficulties in school or because of disruptive behavior. Only two of the participants were classified as ADHD-combined (both boys), whereas the remaining were classified as ADHD-inattentive or attention deficit disorder (ADD). Six of the participants did not experience difficulties in social functioning, that is, they had many friends and a well-functioning social life, whereas three by their own account experienced severe difficulties in social functioning. They were all currently working on getting an education by attending either boarding school or high school and one was training to become a blacksmith. Six of the participants were on different forms of medication for ADHD, whereas the remaining three had either stopped taking the medication or had declined to take them altogether.

No individuals that we contacted were unwilling to be interviewed.

Interview schedule

To gain insight into the experience of receiving and living with an ADHD diagnosis, a semi-structured interview guide was constructed concerned with overall questions of family relations, friendships, school experiences, stigmatization, and their own perception of both the ADHD diagnosis and their experiences with the difficulties associated with the disorder. To aid the conversation, three visual diagrams were constructed. One containing two photos of a mother with characteristics illustrating dimensions of loving/caring versus harshness, and a similar diagram with a father. Another was for friends, with four photos illustrating obedient versus disobedient and insiders versus outsiders. Using a semi-structured interview guide allowed for the participants to elaborate on the subjects and for the interviewer to encourage elaboration on the topics. For the most part, the interviews took place in the participants’ homes and two took place at the Center for Drug and Alcohol Research. The interviews lasted between 30 and 75 min. The interview guide and graphical materials are found in Supplements 1 to 4.

Data analysis

The study applied a narrative psychological approach to the analysis. This approach was chosen because of its ability to let us explore and attempt to understand the inner lives of individuals through the stories they tell and the way they create meaning of the events in their lives (Lieblich, Tuval-Mashiach, & Zilber, 1998). Different individuals attach different values to the experiences and events in their lives, such as being diagnosed with ADHD, and the influence of their pre-existing experiences will affect the degree to which being diagnosed with ADHD will affect their identities and their self-images. Narrative analysis lets us get a picture of their identities and their self-images and the modulations of these as a consequence of having an ADHD diagnosis through the stories they tell and the value they attach to their problems as relating to ADHD. It also allows us to get an account of the ways in which their stories, and as such their identities and self-images, get reconstructed following being diagnosed with ADHD.

The interviews were not constructed in a way that opened up for a life-story analysis; however, following Lieblich et al. (1998), a categorical-content perspective was applied to the data. All interviews were transcribed, and the analysis began by a detailed examination of the transcripts, reading and re-reading each interview. Using a deductive technique, each interview was coded for overall themes of self-image, any statements regarding how they perceived themselves; self-worth, any statements regarding how they valued themselves; self-stigma, statements concerning their own ideas of how others perceived persons with ADHD and how they themselves perceived individuals with ADHD in general; and last, any statements on the process they went through after receiving a diagnosis of ADHD.

Results and Discussion

The analysis revealed four overall narratives: becoming or remaining different, resigning to the difficulties including the diagnosis, narratives of a new understanding and problematic symptoms versus valued traits. All of these narratives involved thinking about past and present experiences in terms of social relationships, self-image, and acceptance. Some would reinterpret their past experiences in light of the diagnosis, and for some the diagnosis would simply become part of their pre-existing self-understanding.

Becoming or Remaining Different

A central theme across interviews was negotiating normality and abnormality in relation to the self and others. Feelings of being abnormal or different from others is a theme that has been previously described in qualitative research on children and youth with ADHD (Kendall, Hatton, Beckett, & Leo, 2003; Meaux, Green, & Broussard, 2009). Several of the interviewees in this study described a feeling of not being normal, not being like their peers. They often felt they lacked social skills with regards to appropriate behavior and verbal expression in social settings, such as schools. These narratives of being abnormal were not linked to them belonging to the diagnostic category of ADHD per se, but rather to their experiences of standing out and of social exclusion and failure in connecting to others. Also, the failure to fit in was often described as dating back before the diagnosis. Being diagnosed with ADHD, however, provided some with an explanation for or an understanding of these social difficulties, whereas others saw it as a cementation of them not being normal. The analysis will start with the stories of two girls who were both diagnosed in their adolescence. Being diagnosed in adolescence rather than in early childhood called for a reassessment of both their past experiences and their self-image in the light of the new understanding that the diagnosis of ADHD offered. However, whether or not this new understanding was received as a welcome gift was affected by the views the girls held on the ADHD diagnosis and the image they had of themselves. For Louise in the quote below, the label of ADHD seemed to further increase her feeling of not being normal. She had experienced being diagnosed with ADHD like being labeled as “a weirdo.” The weirdo label was an internalized ADHD stereotype of hers.

I just think they would label me as a weirdo as soon as I told them “I have ADHD.” Ok, what’s that? Weirdo! . . . I remember, before I was diagnosed, I was down at the [youth] club and there was this person called J. They kept calling her DAMP [dysfunction in attention, motor and perception, a diagnosis that was earlier used to describe a syndrome similar to ADHD, SJ] child and I remember I just looked oddly at her every time she came around, because she walked oddly, talked oddly, behaved oddly, did odd things. She was just odd. We used to have a tree outside, one time she just stood out there and threw . . . a teddy up in the tree, it got stuck and she climbed up to get it. And I thought “Ok, weirdo!” But then when I was diagnosed myself I didn’t want anyone to know because . . . what if they thought the same about me. (Louise, 20)

For Louise, the image of the “odd girl” was linked to the ADHD diagnosis and as such to an idiosyncratic stereotypical representation. Studies have shown that individuals who believe more strongly that they fit the prototype of a group are more reliant on the status of the group with regards to their self-esteem (Badea, Jetten, Iyer, & Er-Rafiy, 2011) and as she believed and had been told that she herself had a tendency to behave oddly, and thereby resemble her prototypical representation of individuals with ADHD, to disavow the diagnosis might have acted as a buffer against the negative emotions that the perceived discrimination or devaluation that went along with the diagnosis could have inflicted. She therefore attempted to ignore that she had this diagnosis and was very reluctant to embrace or investigate the understanding of her problems as relating to an ADHD diagnosis, as it somehow increased her feeling of being different. So for Louise, it was not just a matter of receiving a label of ADHD imposed on her from outside forces, it was her own ideas about how individuals with ADHD behave and her own sense of being different and odd that hit a vulnerable place in her and made her reject the diagnosis and refuse to learn more about it. For others, the diagnosis of ADHD provided them with an acceptance or understanding of their own differentness and a background from which to work on improving on the skills they felt they lacked. Veronica, a gifted student who described herself as “the crooked piece of the puzzle” and who by her own account had severe difficulties in social relations and had no friends in school, took a hands-on approach to the difficulties she experienced. The possible explanation that an ADHD diagnosis carried with it was welcomed as a place of departure for her to come to terms with her loneliness and to place the blame for her inability to establish social relationships outside herself.

In connection with me getting the diagnosis a lot of thoughts about it emerged of course. Thoughts like “Am I really that strange” and such. But as it has settled and as I have thought about it, it has been an explanation for why I have had these problems. The problems that I have, I of course have to erase them or fix them, I need to find a way to start structuring, I have to find ways to talk to people, become more secure about how you act and become more used to being around people, because I’ve been a little bit isolated the last couple of years. (Veronica, 17)

So, although not always being successful, she attempted to adapt to having ADHD by restructuring her life, for example, using her mobile phone to help her bring some structure to her everyday life and being open with others about having ADHD in the hope, that they would get an understanding of why she did not interact with them in a way that conveyed that she was actually interested in making friends.

The personal situation of the two girls differed in that prior to being given a diagnosis of ADHD, Veronica had tried to accept her inability to make friends in school by staging herself as someone who did not want to belong in the class, describing her classmates as bullies, and in this way, reframe her perceived inability to be accepted as part of the group as a personal choice. Louise, however, had tried to be accepted and had experienced being ostracized for her attempts. So the personal situation with regards to social functioning and the image they had of themselves in relation to their peers had an impact on the reception of the ADHD diagnosis for these girls.

Resignation

While some ignored or adapted to having an ADHD diagnosis, yet others resigned to the diagnosis, in the sense that it would come to both encompass their self-image and render them incapacitated with regards to manifest other parts of their selves that was not affected by the diagnosis. Christian, a young man who had been diagnosed in early childhood and who was working toward becoming a blacksmith, spent most of his free time playing online computer games. In elementary school, he reported that he would spend around 12 hr every day playing computer games, and currently he had reduced the time to around 5 to 6 hr per day. He had few face-to-face contacts, and was very shy about participating in the interview. In addition, he described that he felt physical discomfort in the presence of others, even people he had known for several years.

When asked, he described ADHD as a visible flaw that he had, “I immediately think that others can see, that I have ADHD. And then I immediately think that they won’t like me.” At the same time as viewing ADHD as a flaw and experiencing negative emotions as result of that, he viewed all others with ADHD as his friends by definition. This all-inclusive stance toward others with ADHD indicates a strong sense of membership to the group of people who have ADHD and that his self-image was tied up in having ADHD making it the filter through which he interpreted his experiences.

When I was in elementary school I thought they didn’t like me because I had ADHD. But it could of course have been because of other things.

Having experienced both ostracism and setbacks in education, Christian was struggling to define himself. Defining ADHD as his in-group, he was able to identify himself socially with other young people. At the same time, he described ADHD as a flaw, and as the factor that kept him from moving forward in society. Christian’s perspective may be indicative of a gendered view of ADHD, where the externalizing behavior associated with the ADHD stereotype may be easier for a boy than a girl to accommodate.

Christian’s responses contained little or poorly conceived social reflection and self-reflection. His explanations for his own successes and failures were vaguely termed, and he could be said to be consistently hypomentalizing (Frith, 2004). That is, he would form only very vague ideas about the thought processes of others, such as why someone would reject him, or what kind of qualities he or others could possess that would make them good matches for friendship.

Interpersonal relations are a fundamental aspect of life that affects a person’s overall well-being and self-worth (Brown & Lohr, 1987), although a new understanding for the difficulties in social relations was offered by the diagnosis, how a person reacts to this and the degree to which they are able to reframe their self-image in relation to social functioning seems to be affected again by how one views the diagnosis or those affected by an ADHD diagnosis, but equally importantly by the personal context and the individual resources of the young person. In these interviews, having difficulties with learning, as many of the participants by their own account did, might not affect self-worth in the same degree as not being able to create lasting and meaningful relationships, as the drive to create these relationships might be more inherent (Baumeister & Leary, 1995).

A new understanding

Most of the participants who were diagnosed in adolescence had felt a sense of relief. However, just as Young et al. (2008) found in their study, several of the youth in this study expressed that this initial relief was followed by anger toward professionals by whom they had felt misunderstood. Nevertheless, being able to create a new story incorporating the ADHD explanation for their difficulties was welcomed and several of the participants expressed that they wished they had known that their difficulties were caused by ADHD earlier, as they believed it could have shielded them from a lot of the let downs they had experienced and the frustration they had felt from their parents and their surroundings.

In these instances, the application of the ADHD diagnosis enabled the adolescents to get a new understanding of why they had behaved the way they did and enabled them to place the blame for this as relating to problems associated with ADHD rather than aspects of their selves. At the same time, as the diagnosis gave both them and their parents a better understanding of their problems, they still struggled with the inability of others to understand or accept that the problems they had were real, often feeling that others underestimated their difficulties.

A 19-year old girl described how her own understanding developed after learning about ADHD:

I didn’t really understand why I felt so different compared to others, I didn’t understand why I needed five hours to pull myself together and never really was able to concentrate . . . then I started to read a lot about it and then I thought, you know, it was almost like an epiphany to find out that there actually is an explanation for all of these things. I had always thought that everybody feels like that. But then I found out, not everybody does. (Cecilie, 19)

Some of the participants described how they would keep the extent to which they were sad and unhappy secret from their families because they did not want to be a burden on them. For some, then, the application of an ADHD diagnosis may have affected both their self-identity and their self-worth positively, because it filled a blank spot in their self-understanding. Experiencing that the problems they had dealt with all of their lives had been recognized in the literature and by mental health professionals relieved them in some way of an experience of suffering in solitude and enabled them to open up to their friends and relatives.

Somehow it is really nice to know that it is not something that is only me and it is not something that makes me a mental monster or something like that. That there actually is like a word, that others have it too, somehow that helped a lot. (Veronica, 17)

Another girl described how knowing about ADHD could have been helpful for herself and her mother when she was growing up:

There are a lot of things I remember from my childhood where I’m thinking; it would actually have been very nice to have had this diagnosis from the beginning. Because my mother was insanely hot-tempered when I was younger. And I understand, because I forgot everything and you know, just threw my stuff around, it would take me 20 years to get out the door in the morning and I just remember her standing and yelling at me. (Marie)

Thus, as Marie sees it, the diagnosis would have given her mother an understanding of her that would have helped her cope with having a daughter who seemed unable or unwilling to pull herself together. The theme of being understood, seen, and treated as a person with a disability was recurrent in relation to the value of being knowledgeable about ADHD. For many informants, it was even important to defend their diagnosis against doubts raised by peers or adults.

For instance, one informant described how others’ question the validity of her diagnosis:

There are a lot of people who don’t really believe it and they think; “Well, I have those problems too and I also have problems concentrating” and stuff like that. (Cecilie, 19)

Another described how she was not getting the help she was entitled to.

I have experienced many times that people don’t understand. Because in many ways I seem to be well-functioning . . . For instance in my new school, you can apply for extra hours with the educational board and stuff, right. And I have been granted an extra three hours per week but on average I get less than one hour per week, they haven’t been very good at understanding me in that regard. (Clara, 18)

ADHD is an invisible disorder, in the sense that individuals who do not present with symptoms visible to the eye will appear normal to others. Many of the participants in this study described themselves as well-functioning in many of the areas often disturbed in individuals with ADHD, and struggling mainly with attention problems. As a consequence of appearing normal to others, they expressed often feeling challenged by the lack of understanding by the people in their lives. This lack of understanding both created an obstacle for some of the participants, as well as making them feel responsible for their shortcomings. “It always ends in some kind of argument or something like that. I am extremely lazy” (Martin, 17); “I think she is getting a little sick of it; that I am not on top of things . . . I try, I really do” (Marie, 18).

Despite initial disbelief, most of the participants eventually accepted and even embraced the ADHD diagnosis as being the filter through which they understood the problems they had experienced. As Veronica metaphorically explained:

In the beginning it was really, really hard for me because it was the opposite of everything I perceived myself as being . . . you go there and you get this problem-child diagnosis. It was a total departure, my self-image was pulled up by the roots because I got this diagnosis, but I had just been replanted. (Veronica, 17)

For most of the participants in this study, who received an ADHD diagnosis in early adolescence instead of in their childhood, the initial process stage was shock and disbelief, as they did not recognize themselves in the general cultural image of children with ADHD. However, after having read about the nature of ADHD, most found the descriptions of common symptoms associated with the disorder to mirror their experiences, and this recognition initiated a process of integrating this new understanding of their difficulties with their past experiences and creating a new story to be told, and in that sense, they formed a new identity which incorporated the ADHD diagnosis as part of their constitution and as explaining the parts of their behavior that had made their life troublesome at times. Those, for whom the ADHD diagnosis was eventually welcomed as an explanation of their difficulties, it had a positive impact on the way they felt about themselves and their shortcomings. Knowing that they were not alone with these difficulties and that these difficulties had been recognized and described in the literature made them more legit somehow.

Problematic symptoms versus valued traits

The diagnostic concept of ADHD views hyperactivity and impulsivity as symptoms that produce problems for people. However, a high level of physical and mental activity and impulsivity may not always equal trouble. This is likely to vary both across individuals and over time within individuals. Some of our informants were able to give clear descriptions of how their “symptoms” in fact helped them function or improved their quality of life. They did not have the same conceptualization of the two symptoms and viewed them as inherent traits rather than symptoms of a disorder. In that way, what might be understood as problematic for schools and families may be valued by the person. Veronica describes how she declined taking medication, as it put a break on her usual thought pattern:

I have some medication that I am supposed to take, but I have chosen not to. Because I don’t like the effect it has on me. I don’t like that it stops the brain completely, that’s really scary . . . Instead of one thought I have four thoughts that run simultaneously which communicate with each other and do things together. [They] are still a part of me, still my thoughts. Somehow I have been able to do something constructive with them, in the sense that they help me. For instance, I am very fast when it comes to solving mathematical problems . . . and when I take medication I feel like I only have one thought and then my head is totally quiet.

So while clinicians, teachers, and parents might view the excessive amount of thoughts Veronica experienced as a symptom and sign of mental hyperactivity, she herself valued these both as a means for her to complete assignments faster and as an inherent part of who she was.

Another informant viewed her impulsivity as a personal trait that she valued positively:

I also sometimes think it’s a good idea to be impulsive, but also, that I think differently . . . well, I think since your thoughts are all over the place all the time, you get a lot of input . . . I also think there are a lot of good things about it. I like the impulsiveness, without it being too much, I like that part. I think that’s very much “me.” So I think that’s positive. (Cecilie, 19)

Cecilie appreciated that she was different in her thought pattern, and she believed, and was told by others, that she had a different focus or perspective on things, and she believed this was because of her many thoughts. She found herself to be able to both reflect on things and be impulsive and “wild.” She liked that she was a bit loud at times instead of being a quiet, timid girl. She was able to find the positive aspects of her experiences and not just view them as problematic and symptomatic. Another girl described how others would be surprised, that she had ADHD, because she did not fit well with their ideas about ADHD having to do with unruly children (Marie). At the same time, she described how she felt like she had an extra gear compared with her friends that made her able to go out and have fun with them without drinking alcohol. An ability her friends did not have and that she found to be “quite cool.”

Note that these are not peripheral facets of ADHD that could make up a “silver lining” for the condition. Instead, the three women described how the most central features of ADHD, hyperactivity presented as “many thoughts,” and impulsiveness were beneficial to them and were linked to what made them feel proud, and maintained their relatively high self-esteem. The ability to view aspects of ADHD as positive and as an integrated part of who one is, were also found in children and youth with ADHD in studies by Walker-Noack, Corkum, Elik, and Fearon (2013) and Kendall et al. (2003). But as was evident in the accounts given in the present study and in the study by Walker-Noack et al. (2013), the negative aspects of having ADHD greatly outnumbered the positive aspects. One could argue that the tendency to apply negative characteristics to the category of ADHD might be connected to the overall cultural view discussed earlier. However, research suggests that it is mainly the behaviors and to a much smaller degree the diagnostic label that leads to rejection (Law, Sinclair, & Fraser, 2007; Ohan, Visser, Moss, & Allen, 2013). Being able to hold on to a positive view on characteristics of ADHD might have helped these girls accept and adapt to having ADHD.

How the young person functioned in terms of education, how they managed school, and the view they had of themselves in relation to education shaped their interpretation of what it meant when they were told that they had problems with attention, hyperactivity, and impulsiveness. If they saw themselves as highly successful and competent, the diagnosis would challenge their self-image, which represented a threat that they might not continue to function well in the future. Their ability to experience and handle emotions was important for how they coped with this threat. Perhaps most importantly, the young person’s view of themselves in relation to their friends and peers was extremely important with regards to how they dealt with the stigma of the diagnosis and with acknowledging that some of their problems related to having ADHD.

In terms of other literature on reactions to receiving a diagnosis of ADHD, we know only the study by Young and colleagues (Young et al., 2008). Young et al. described a six-stage process operating in individuals diagnosed with ADHD in adulthood. Does a stage model describe the reactions in these interviews well? The dynamics described by Young et al. were indeed present in many of the interviews. For instance, a sense of relief, acceptance, and anger over not having been understood earlier, were all prominent in these interviews as well as in the Young and colleagues study (Young et al., 2008).

However, in other ways, the processes emerging in the interviews with the informants in the present study differ sharply from the view that coping with a diagnosis of ADHD forms a progression through stages that is likely to be similar across different individuals. What were much more prominent in the present material, were the differences between the informants in terms of their life circumstances, self-image, and way of relating to others and how these were related to their reactions of being in the diagnostic category of ADHD.

The interviews were structured differently, and the aim of our study was not to assess phases in acceptance. Nevertheless, the differences were striking. Some of our informants expressed intense self-doubt and continued to question themselves.

Another reason why we might observe a different process compared with Young et al. (2008), is that our informants were adolescents instead of adults. The adults in Young’s study might have formed an identity around being apparent failures, being initially relieved that their self-image could be modified, and take away personal blame for their shortcomings, whereas the participants in this study were just embarking on the venture of forming an identity. In addition, being adults at the time of being diagnosed with ADHD, the patients in Young’s study are likely to have had much more of a say in terms of whether or not they were to be assessed for ADHD, whereas our informants were generally diagnosed on the initiative of their parents, and some had even been diagnosed with ADHD for years and using medication, before eventually being informed of the diagnosis for which they were taking the medicine. The process of accommodating one’s self-image with a technoscientific identity must be extremely different, depending on whether the identity is imposed from the outside by parents or schoolteachers or is a process initiated and regulated by the patient.

Likewise, although having ADHD can be conceived as a new situation for the informants in Young’s study, some of our participants had been diagnosed in early childhood and had somehow always had to relate to this fact, whereas for others it was a recent discovery and a new situation. Therefore, the participant’s stories in this study can be regarded as narratives of accommodating to an ADHD diagnosis at different stages of the process, which coupled with the personal and emotional life of the participants produced very heterogeneous accounts.

Strengths and Limitations

There are several limitations to this study that limits generalization to young people with ADHD based on the information from the participants of the study. First, as most of the participants were female, they might have had a greater tendency to internalize insecurities stemming from their difficulties in social relations, which is evident in that about half of the female group initially went through psychiatric evaluations because of depression. This might have biased the results regarding the direct effect of an ADHD diagnosis on identity and self-image. Furthermore, because ADHD is a disorder with three different subtypes, and the participants in this study mainly manifested symptoms of inattention rather than hyperactivity, the results of the analysis regarding identity-work and self-image speak to a particular group within the population of adolescents diagnosed with ADHD. We did not confirm the diagnoses, or assess comorbidity. However, the focus of the study was on individual patterns of meaning relating to themes, rather than on describing groups of patients with ADHD.

Being based on in-depth analysis of a small sample of participants, the analysis was also limited in its ability to compare groups (e.g., boys vs. girls, young people who took medication vs. young people who did not, those with learning disabilities vs. those without). Quantitative research with large samples is generally more suitable for this kind of analyses.

A further limitation is that both researchers were trained as psychologists and may have focused more on psychological perspectives than perspectives that other professional groups would have done (e.g., sociologists or anthropologists would possibly emphasize the significance of the historical and cultural context more).

However, the study also had strengths. Compared with previous qualitative work, the narrative approach allowed us to take fuller advantage of the qualitative method. In particular, the narrative method allows us to focus more on individual contexts and meanings that differ between individuals compared with theme-driven approaches (Kendall et al., 2003; Meaux et al., 2009; Shattell, Bartlett, & Rowe, 2008). The themes in a narrative analysis are analyzed in relation to their meaning for each individual respondent, rather than in terms of their general place in the overall discourse among a group of individuals.

Conclusions

Becoming oneself with ADHD is a complex and multifaceted process. The narrative and ideographic approach used in this study does not lend itself to simple conclusions. What was evident in these interviews was that young people’s pre-existing experiences and anxieties provided the central framework for their accommodation or rejection of the label of ADHD. Stereotypes of ADHD as a “problem child” label or a “weird child” label shaped their reaction. For those who were socially isolated and had few close friends, the idea of being even more deviant produced profound anxiety about never being able to fit in. For those who were socially conforming, the idea of receiving a “problem child” diagnosis led to a conflict.

The condition itself, ADHD, was not simply a mental disorder for our informants. For some, it was the global label of their shortcomings and loneliness, at times with an unclear demarcation of what was the label and what was their personal limitations. For others, it included traits that improved their quality of life or their abilities in some way.

Psychiatric diagnostic categories, such as ADHD, can and should be viewed as useful tools in aiding therapists, patients, and families to acquire a general knowledge about the most common symptoms associated with a condition and use this coupled with knowledge of the individual in treatment and everyday life. Unfortunately, there is always a risk that eventually, others will view people in terms of their diagnosis. These analyses illustrate why it is important that a person with ADHD is not seen as an inattentive or hyperactive child. The person is a person with hopes, dreams, goals, experiences, anxieties, and values. Recently, the Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM-5; American Psychiatric Association, 2013) work group developed the Levels of Personality Functioning Scale (LPFS), now included in the DSM-5 manual as an instrument for further research (Bender, Morey, & Skodol, 2011; Morey et al., 2011). The LPFS is an attempt to assess global functioning in areas such as intimacy, empathy, identity, and self-directedness. This attempt to return to a holistic view of personality provides a perspective for the analyses presented here. The ability to function in life across domains and maintain a stable self-image is the key to understanding how and why these young people reacted to the diagnosis the way they did.

Footnotes

Acknowledgements

The authors would like to thank Birgitte Thylstrup for taking the time out to read and give valuable comments on the final draft of this article.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The first author, Sheila Jones, has received a scholarship from the School of Business and Social Science at Aarhus University, a government-funded university in Denmark.

Author Biographies

Sheila Jones, cand. Psych, is a doctoral student at the centre for Alcohol and Drug Research at Aarhus University. Her research interests include ADHD and substance use disorders,

Morten Hesse, PhD, is an associate professor in the Centre for Alcohol and Drug Research at Aarhus Univeristy. His research and clinical interests include substance use disorders, and the treatment and diagnosis of co-morbid personality disorders, ADHD, anxiety and depression.

References

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: Author.

Anderson

T. L.

Mott

J. A.

(1998). Drug-related identity change: Theoretical development and empirical assessment. Journal of Drug Issues, 28, 299-328.

Badea

Jetten

Iyer

Er-Rafiy

(2011). Negotiating dual identities: The impact of group-based rejection on identification and acculturation. European Journal of Social Psychology, 41, 586-595.

Barkley

R. A.

(1997). Attention-deficit/hyperactivity disorder, self-regulation, and time: Toward a more comprehensive theory. Journal of Developmental & Behavioral Pediatrics, 18, 271-279.

Barkley

R. A.

(2010). Against the status quo: Revising the diagnostic criteria for ADHD. Journal of the American Academy of Child & Adolescent Psychiatry, 49, 205-207.

Baumeister

R. F.

Leary

M. R.

(1995). The need to belong: Desire for interpersonal attachments as a fundamental human motivation. Psychological Bulletin, 117, 497-529.

Bender

D. S.

Morey

L. C.

Skodol

A. E.

(2011). Toward a model for assessing level of personality functioning in DSM-5, Part I: A review of theory and methods. Journal of Personality Assessment, 93, 332-346.

Bradley

(1937). The behavior of children receiving benzedrine. American Journal of Psychiatry, 94, 577-585.

Brown

B. B.

Lohr

M. J.

(1987). Peer-group affiliation and adolescent self-esteem: An integration of ego-identity and symbolic-interaction theories. Journal of Personality and Social Psychology, 52, 47-55.

10.

Bussing

Schoenberg

N. E.

Rogers

K. M.

Zima

B. T.

Angus

(1998). Explanatory models of ADHD: Do they differ by ethnicity, child gender, or treatment status? Journal of Emotional and Behavioral Disorders, 6, 233-242.

11.

Charmaz

(1995). The body, identity, and self: Adapting to impairment. The Sociological Quarterly, 36, 657-680.

12.

Clarke

A. E.

Shim

J. K.

Mamo

Fosket

J. R.

Fishman

J. R.

(2003). Biomedicalization: Technoscientific transformations of health, illness, and U.S. biomedicine. American Sociological Review, 68, 161-194.

13.

Conrad

(1975). The discovery of hyperkinesis: Notes on the medicalization of deviant behavior. Social Problems, 23, 12-21.

14.

Cooley

C. H.

(1902). Human nature and the social order. New York, NY: Schocken Books.

15.

DeNisco

Tiago

Kravitz

(2005). Evaluation and treatment of pediatric ADHD. Nurse Practitioner, 30, 14-21.

16.

Dietz-Uhler

Murrell

(1998). Effects of social identity and threat on self-esteem and group attributions. Group Dynamics: Theory, Research, and Practice, 2, 24-35.

17.

Donbaek

D. F.

Elklit

Pedersen

M. U.

(2014). Post-traumatic stress disorder symptom clusters predicting substance abuse in adolescents. Mental Health and Substance Use, 1-16.

18.

Dreier

(2009). Persons in structures of social practice. Theory & Psychology, 19, 193-212.

19.

Erikson

E. H.

(1968). Identity, youth, and crisis. New York: W.W. Norton.

20.

Fiks

A. G.

Mayne

DeBartolo

Power

T. J.

Guevara

J. P.

(2013). Parental preferences and goals regarding ADHD treatment. Pediatrics, 132, 692-702.

21.

Frattaroli

(2001). Healing the soul in the age of the brain: Becoming conscious in an unconscious world. New York, NY: Viking.

22.

Frith

C. D.

(2004). Schizophrenia and theory of mind. Psychological Medicine, 34, 385-389.

23.

Goffman

(1974). Stigma: Notes on the management of spoiled identity. New York, NY: Jason Aronson.

24.

Graham

L. J.

(2006). From ABCs to ADHD: The role of schooling in the construction of behavior disorder and production of disorderly objects. International Journal of Inclusive Education, 12, 7-33.

25.

Hollway

(2010). Relationality: The intersubjective foundations of identity. In Wetherell

Mohanty

C. T.

(Eds.), The SAGE handbook of identities (pp. 216-233). London, England: SAGE.

26.

Horton-Salway

(2011). Repertoires of ADHD in UK newspaper media. Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine, 15, 533-549.

27.

Kendall

Hatton

Beckett

Leo

(2003). Children’s accounts of attention-deficit/hyperactivity disorder. Advances in Nursing Science, 26, 114-130.

28.

Law

G. U.

Sinclair

Fraser

(2007). Children’s attitudes and behavioural intentions towards a peer with symptoms of ADHD: Does the addition of a diagnostic label make a difference? Journal of Child Health Care, 11, 98-111.

29.

Lee

S. S.

Humphreys

K. L.

Flory

Liu

Glass

(2011). Prospective association of childhood attention-deficit/hyperactivity disorder (ADHD) and substance use and abuse/dependence: A meta-analytic review. Clinical Psychology Review, 31, 328-341.

30.

Lieblich

Tuval-Mashiach

Zilber

(1998). Narrative research: Reading, analysis, and interpretation. Thousand Oaks, CA: SAGE.

31.

McAdams

D. P.

(1993). The stories we live by: Personal myths and the making of the self. New York, NY: William Morrow.

32.

McCarthy

Wilton

Murray

M. L.

Hodgkins

Asherson

Wong

I. C. K.

(2012). Persistence of pharmacological treatment into adulthood, in UK primary care, for ADHD patients who started treatment in childhood or adolescence. BMC Psychiatry, 12, Article 219.

33.

McLean

K. C.

Pasupathi

(2010). Narrative development in adolescence: Creating the storied self. New York, NY: Springer Science.

34.

Mead

G. H.

(1934). Mind, self, and society. Chicago, IL: University of Chicago Press.

35.

Meaux

J. B.

Green

Broussard

(2009). ADHD in the college student: A block in the road. Journal of Psychiatric and Mental Health Nursing, 16, 248-256.

36.

Morey

L. C.

Berghuis

Bender

D. S.

Verheul

Krueger

R. F.

Skodol

A. E.

(2011). Toward a model for assessing level of personality functioning in DSM-5, Part II: Empirical articulation of a core dimension of personality pathology. Journal of Personality Assessment, 93, 347-353.

37.

Ohan

J. L.

Visser

T. A. W.

Moss

R. G.

Allen

N. B.

(2013). Parents’ stigmatizing attitudes toward psychiatric labels for ADHD and depression. Psychiatric Services, 64, 1270-1273.

38.

Schmitz

M. F.

Filippone

Edelman

E. M.

(2003). Social representations of attention deficit/hyperactivity disorder, 1988-1997. Culture Psychology, 9, 383-406.

39.

Shattell

M. M.

Bartlett

Rowe

(2008). “I have always felt different”: The experience of childhood AD/HD. Journal of Pediatric Nursing, 23, 49-57.

40.

Sulik

G. A.

(2011). “Our diagnoses, our selves”: The rise of the technoscientific illness identity. Sociology Compass, 5, 463-477.

41.

Tajfel

(1981). Human groups and social categories—Studies in social psychology. London, England: Cambridge University Press.

42.

Walker-Noack

Corkum

Elik

Fearon

(2013). Youth perceptions of attention-deficit/hyperactivity disorder and barriers to treatment. Canadian Journal of School Psychology, 28, 193-218.

43.

World Health Organization. (1992). ICD-10 classifications of mental and behavioural disorder: Clinical descriptions and diagnostic guidelines. Geneva, Switzerland: Author.

44.

Wilens

T. E.

(2004). Attention deficit/hyperactivity disorder and the substance use disorder: The nature of the relationship, subtypes at risk, and treatment issues. Psychiatric Clinics of North America, 27, 283-301.

45.

Young

Bramhan

Gray

Rose

(2008). The experience of receiving a diagnosis and treatment of ADHD in adulthood: A qualitative study of clinically referred patients using interpretative phenomenological analysis. Journal of Attention Disorders, 11, 493-503.

46.

Zetterqvist

Asherson

Halldner

Langstrom

Larsson

(2013). Stimulant and non-stimulant attention deficit/hyperactivity disorder drug use: Total population study of trends and discontinuation patterns 2006-2009. Acta Psychiatrica Scandinavica, 128, 70-77.