The purpose of this article is to describe the subjective experience of the diagnosis of Attention Deficit and Hyperactivity Disorder (ADHD) and the cultural meanings that shape this experience. Based on interviews and discussion groups with diagnosed people and their families in Chile and France, this article show that ADHD can acquire multiple meanings. From a thematic analysis, we identified three registers or ways of living and thinking about ADHD. In the deficit register, the disorder is experienced primarily as a failure of certain abilities. In the disruption register, the disorder is experienced as disrupting the person’s life, personality and interactions, which must then be normalized. In the register of hidden potential, on which this article focuses, ADHD is simultaneously thought of as a difficult and valuable condition, a source of exceptional capacities that are often hidden in the ordinary functioning of social life. We therefore invite reflection that identifies the factors of mobilization or non-mobilization of the hidden potential register, with particular emphasis not only on relational configurations, socio-economic variables, and the gender variable, but also on the institutional and political context of each country.
ADHD; Diagnostic Experience; Hidden Potential; Chile; France
O objetivo deste artigo é descrever a experiência subjetiva do diagnóstico de Transtorno do Déficit de Atenção com Hiperatividade (TDAH) e os significados culturais que moldam essa experiência. Com base em entrevistas e grupos de discussão com pessoas diagnosticadas e suas famílias no Chile e na França, este artigo demonstra que diversos significados podem ser atribuídos ao TDAH. A partir de análise temática, foram identificados três registros ou modos de viver e pensar TDAH. No registro déficit, o transtorno é vivenciado primariamente como falha de certas habilidades. No registro distúrbio, o transtorno é vivenciado como uma perturbação da vida pessoal, personalidade e interações que necessita ser normalizada. No registro de potencial oculto, foco deste artigo, TDAH é considerado simultaneamente condição difícil e valiosa, fonte de capacidades excepcionais que estão habitualmente ocultas no andamento comum da vida social. Portanto, propõe-se refletir e identificar os fatores de mobilização e não mobilização do registro de potencial oculto, com particular ênfase não só nas configurações relacionais, variáveis socioeconômicas e de gênero, mas também no contexto institucional e político de cada país.
TDAH; Experiência Diagnóstica; Potencial Oculto; Chile; França
Diagnosis is an event deeply rooted in our contemporary notion of psychiatric care. For mental health professionals, diagnosis allows the patient’s story to be organized into a narrative that provides a form for the past and a focus on the future (Jutel; Nettleton, 2011JUTEL, A.; Nettleton S. Towards a sociology of diagnosis: reflections and opportunities. Social Science & Medicine, Oxford, v. 73, n. 6, p. 793-800, 2011.). For patients, diagnosis can provide a framework to interpret and understand their experiences, providing a sense of relief and control that reduce uncertainty (Perkins et al., 2018PERKINS, A. et al. Experiencing mental health diagnosis: a systematic review of service user, clinician, and carer perspectives across clinical settings. Lancet Psychiatry, Kidlington, v. 5, n. 9, p. 747-764, 2018.). However, for some individuals, diagnosis seems to be a denial of their own account of the causes of their problems, and it can generate feelings of hopelessness, disempowerment and stigma (Goffman, 1975GOFFMAN, E. Stigmate : les usages sociaux des handicaps. Paris: Minuit, 1975.). Since psychiatric diagnosis triggers diverse responses and social expectations, it can elicit a retrospective reading of one’s own problems and can have a major impact on the biographical trajectory, representing a transformative moment that is integrated into people’s daily lives (Hacking, 1998HACKING, I. Rewriting the soul. New Jersey: Princeton University Press, 1998.). Psychiatric diagnoses not only describe symptoms and guide the therapeutic process, but also influence how people perceive themselves and negotiate their personal identity (Rose, 2018ROSE, N. Our psychiatric future. London: Polity, 2018.).
Mental health categories are embodied in a complex system of cultural representations (an idea of human nature and its dysfunctions), moral values, institutions and practices. Several sociological and anthropological investigations have shown the historical, cultural and political relativity of diagnosis and how the manifestations and meanings of distress, and responses to it, are socially shaped (Jenkins, 2015JENKINS, J. Extraordinary conditions: culture and experience in mental illness. California: University of California Press, 2015.; Kitanaka, 2012KITANAKA, J. Depression in Japan: psychiatric cures for a society in distress. New Jersey: Princeton University Press, 2012.; Kleinman, 1991KLEINMAN, A. Rethinking psychiatry: from cultural category to personal experience. New York: The Free Press, 1991.). These researches have also shown that the sociohistorical context gives greater social salience to specific forms of mental distress, thus providing a set of cultural meanings that shape the expression of distress and the ways of naming, qualifying and treating it (Castel, 2011CASTEL, P.-H. Âmes scrupuleuses, vies d’angoisse, tristes obsédés. Paris: Ithaque, 2011.; Ehrenberg, 1998EHRENBERG, A. La fatigue d’etre soi: depression et societe. Paris: Odile Jacob, 1998.; Hacking, 2002HACKING, I. Mad travelers: reflections on the reality of transient mental illnesses. Cambridge: Harvard University Press, 2002.; Young, 1997Young, A. The harmony of illusions: inventing post-traumatic stress disorder. New Yersey: Princeton University Press, 1997.). In other words, cultural meanings and representations can transform the social value of symptoms and the very experience of mental disorders.
We adopted this socio-anthropological lens to describe the subjective experiences of people diagnosed with Attention Deficit and Hyperactivity Disorder (ADHD), based on the results of two studies conducted in Chile and France. Several researches have shown that this diagnosis has profound effects on individuals’ perceptions of themselves and their expectations for their future (Caliman, 2008CALIMAN, L. O TDAH: entre as funções, disfunções e otimização da atenção. Psicologia em Estudo, Maringá, v. 13, n. 3, p. 559-566, 2008.). ADHD diagnosis provides a language for speaking of difficulties, disruptive behaviors and distress, making it thinkable in a way that also provides some kind of narrative of its nature, origins and implications. For example, with regard to academic performance, ADHD children are never described as “normal”: they are either described as having significant difficulties or, conversely, as having some degree of intellectual superiority (Rafalovich, 2004RAFALOVICH, A. Framing ADHD children: a critical examination of the history, discourse, and everyday experience of attention deficit/hyperactivity disorder. New York: Lexington Books, 2004.). In a previous article, we were particularly interested in the ambivalence of the meanings attributed to ADHD (Béliard et al., 2018BÉLIARD, A. et al. Le TDA/H, un diagnostic qui agite les familles : les quêtes diagnostiques autour d’enfants agités, entre rupture et continuité. Anthropologie et Santé, Paris, n. 17, p. 1-21, 2018. Disponível em: <Disponível em: https://bit.ly/2FVxe01 >. Acesso em: 3 dez. 2018.
https://bit.ly/2FVxe01... ). While there are large numbers of negative cultural meanings surrounding ADHD, there is also a set of positive meanings and representations that underscore the special or exceptional abilities associated with this condition. Certain children can be described as restless and violent, but according to some parents these traits are associated with the rewarding description of a strong character and charismatic personality, in which hyperactivity is related to “hyper-intelligence”, intellectual speed and creativity (Béliard et al., 2018).
We have therefore drawn on work that provides analytical insights into how the social, political and cultural context shapes this type of experience, providing ambiguous meanings, both positive and negative. For example, Martin (2009MARTIN, E. Bipolar expeditions: mania and depression in american culture. Princeton: Princeton University Press, 2009.) shows that in the contemporary American economic culture manic experiences, once considered as a sign of deregulated irrationality, are associated with extraordinary skills that improve people’s productivity; bipolar people are thus perceived as dynamic, creative, tireless and charismatic. This proposal echoes other researches on autism. Vidal and Ortega (2017VIDAL, F.; ORTEGA, F. Being brains: making the cerebral subject. New York: Fordham University Press, 2017.) show that the development of the neurosciences and “neuro” vocabulary is historically connected to a turn away from psychoanalysis and towards a neurobiological and genetic understanding of autism. From this perspective, neuropsychiatric pathologies are not only the expression of a deficit, because patients always have assets and special capacities on which the clinician can rely (Sacks, 1996SACKS, O. Un anthropologue sur Mars. Paris: Seuil, 1996.). This turn allowed autism to be reinterpreted as a positive attribute (“neurodiversity”), and served to demonstrate the legitimacy of the autistic experience: people diagnosed with Asperger syndrome and other forms of “high-functioning autism” are different, but not abnormal (Grandin; Panek, 2013GRANDIN, T.; Panek R. The autistic brain: thinking across the spectrum. New York: Houghton Mifflin Harcourt, 2013.). In this way, the brain is transformed into a somatic seat of new identities and autistic people appear as having exceptional abilities that the “neurotypicals” do not have (Vidal; Ortega, 2017).
From a similar perspective, Alain Ehrenberg (2018EHRENBERG, A. La mécanique des passions : cerveau, comportement, société. Paris: Odile Jacob, 2018.) proposes the term “hidden potential” to denote an ideal that has developed in contemporary individualistic societies: the ideal of an individual capable of experiencing achievements by transforming his or her disabilities into an asset. More specifically, he points to the idea that people identified as disabled or mentally ill are now considered as individuals capable of self-actualization, not only in spite of the disorder that affects them, but also through that disorder. Ehrenberg considers that this ideal is linked to a new moral, social and political context, at several levels. First, he links the development of this ideal to the transformations of moral values and collective representations, and to the development of the norm of autonomy and expectations focused on the diversification of lifestyles. Second, he assumes that this ideal has found support in the developments of cognitive neuroscience that promotes the hypothesis of brain plasticity: individuals can find resources in their brain to transform themselves and increase their own value.
To what extent does this ideal echo the experiences of the people we met during our studies? In this article, by exploring the subjective experiences of ADHD and the cultural meanings that shape these experiences in Chile and in France, we seek to specify the content of this ideal and the status of this hypothesis.
It seems important to raise the question of the differentiation of the diagnostic experiences and the cultural meanings of ADHD. Most studies describing ADHD as a mental disorder place little emphasis on differentiated experiences of the diagnosis. Yet some sociological and anthropological research has shown, for example, that parents from different sociocultural, economic and ethnic backgrounds may have different perceptions about behavioural norms and when to consider a disruptive behaviour indicative of a clinical disorder (Bergey et al., 2018BERGEY, M. et al. (Ed.). Global perspectives on ADHD: social dimensions of diagnosis and treatment in sixteen countries. Baltimore: Johns Hopkins University Press, 2018.; Hinshaw; Scheffler, 2014HINSHAW, S.; SCHEFFLER, R. The ADHD explosion: myths, medication, money, and today’s push for performance. New York: Oxford University Press, 2014.; Singh, 2011SINGH, I. A disorder of anger and aggression: children’s perspectives on attention deficit/hyperactivity disorder in the UK. Social Science & Medicine, Oxford, v. 73, n. 6, p. 889-896, 2011.). Other research has shown that while some parents adopt a biological (neurological or genetic) explanation for the disruptive behaviour of their children (Travell; Visser, 2006TRAVELL, C.; VISSER, J. “ADHD does bad stuff to you”: young people’s and parents’ experiences and perceptions of attention deficit hyperactivity disorder (ADHD). Emotional and Behavioural Difficulties, Abingdon, v. 11, n. 3, p. 205-216, 2006.), others adopt a perspective that interprets ADHD symptoms as part of children’s normal development (Singh, 2005SINGH, I. Will the “real boy” please behave: dosing dilemmas for parents of boys with ADHD. American Journal of Bioethics, Cambridge, v. 5, n. 3, p. 34-47, 2005.). Our analyses also revealed that the same diagnosis may lead to different appropriations and may have very different meanings.
In the first part of the article, we describe the political and institutional contexts in which the respondents’ experiences are situated and we present the two studies on which this article draws. These are two studies conducted respectively in Chile and in France, without being comparative. The second part presents a thematic analysis of the research material. We distinguish three registers of experience of ADHD: deficit, disturbance, and hidden potential. By critically examining the articulation between these three registers, we can clarify the status of the “hidden potential”, which can be mobilized at certain times and in certain enunciation contexts. The third part presents two case studies and further explores the conditions for mobilizing and not mobilizing the discourse of hidden potential, with a particular focus on socio-economic conditions and gender. By situating these three registers in the specific contexts of the two countries, we also open up avenues for refining the content of the experience in terms of hidden potential, according to the political and institutional context.
As we will see, the idea of “hidden potential” sheds light on one dimension of the respondents’ experience: those processes whereby people rely on a diagnosis to develop a new understanding of their situation, thus making a shift from deficit to potential. But not everyone experiences ADHD in this way. The hidden potential discourse corresponds to the experience of a minority of people. It is not used at all times and in all contexts. We have worked on this hypothesis by testing it against several variations and comparisons, specifying the contexts in which the ideal can be mobilized. Among other things, we have critically examined the socio-economic conditions and the role of the gender variable, as well as the institutional (school, among others) and discursive context in which the ideal of hidden potential is found.
Two research projects in their context
Our investigations take place in two countries where the presence of ADHD, both as an epidemiological fact and as a public health problem, is very different. In Chile, “disruptive disorders” is the most prevalent group of psychiatric disorders among children and adolescents, affecting 14.6% of this population. Within this group, ADHD reach 10.3% across the country and 18.7% in Santiago (Vicente et al., 2012VICENTE, B. et al. Prevalence of child and adolescent mental disorders in Chile: a community epidemiological study. Journal of Child Psychology and Psychiatry, Oxford, v. 53, n. 10, p. 1026-1035, 2012.). This figure is significantly higher than the world wide prevalence calculated at 7% (Thomas et al., 2015THOMAS, R. et al. Prevalence of attention-deficit/hyperactivity disorder: a systematic review and meta-analysis. Pediatrics, Elk Grove, v. 135, n. 44, p. 994-1001, 2015.). The comparatively high prevalence of this diagnosis has led to the emergence over the last decade of different detection, diagnosis and treatment strategies in the fields of health and education. In France, the diagnosis rate (between 3.5% and 5.6%) remains much lower than in Chile (Lecendreux; Konofal; Faraone, 2011LECENDREUX, M.; Konofal, E.; Faraone, S. Prevalence of attention deficit hyperactivity disorder and associated features among children in France. Journal of Attention Disorders, Thousand Oaks, v. 15, n. 6, p. 516-524, 2011.), and relatively low compared to the estimated global prevalence of the disorder. However, the diagnosis of ADHD has spread relatively rapidly, becoming a public issue (Akrich; Rabeharisoa, 2018AKRICH, M.; Rabeharisoa, V. The French ADHD landscape: maintaining and dealing with multiple uncertainties. In: BERGEY M. et al. (Ed.). Global perspectives on ADHD: social dimensions of diagnosis and treatment in sixteen countries. Baltimore: Johns Hopkins University Press, 2018. p. 233-260.).
Socio-political and institutional configurations also form two very different contexts for the ADHD experience in Chile and France. In Chile, ADHD has acquired a priority status in childhood policies, and specific programs have been implemented from an intersectoral approach (Chile, 2013CHILE. Ministerio de Salud. Guía clínica: atención integral de niñas/ niños y adolescentes con trastorno hipercinético/trastorno de la atención (THA). Santiago, 2008. Disponível em: <Disponível em: https://bit.ly/2FndIt2 >. Acesso em: 24 jan. 2019.
https://bit.ly/2FndIt2... ). In the area of education, this diagnosis is approached through the School Integration Programme (PIE) where ADHD has been included as a temporary “special educational need”. In public health, the high prevalence of diagnosis led to its incorporation into child and adolescent health plans in the late 1990s, through specific clinical guidelines and the programme “Skills for Life”, which is a strategy to prevent this kind of disorder through joint work between school and health services (Chile, 2008CHILE. Ministerio de Salud. Programa Nacional de Salud de la Infancia con Enfoque Integral. Santiago, 2013.). Thus, in the school system, ADHD diagnosis may be the basis of allocation to special education provision. The fact that the PIE programme is regulated by the Law No. 170, which establishes the requirements for the implementation of this programme through school grants for each child who is diagnosed with ADHD, has aroused various suspicions regarding over-diagnosis as a strategy used by schools to obtain extra financial resources.
In 2014, the French High Authority for Health published recommendations for the management of ADHD. This official document, which notes that the disorder is still largely under-diagnosed in France (HAS, 2014HAS - HAUTE AUTORITE DE SANTE. Conduite à tenir en médecine de premier recours devant un enfant ou un adolescent susceptible d’avoir un trouble déficit de l’attention avec ou sans hyperactivité. Saint-Denis La Plaine, 2014. (Recommandation de bonne pratique).), could be considered as the culmination of a process of recognition and legitimization of the diagnosis of ADHD. However, this dissemination is highly controversial. ADHD has provoked a series of public debates on the risks of excessive “medicalization” of childhood. These statements can be linked to the still important place of psychoanalysis in the French context (Fansten, 2018FANSTEN, M. Psychanalyse : une exception française ? In: COUTANT, I.; WANG, S. (Dir.). Santé mentale et souffrance psychique. Paris: CNRS Editions, 2018. p. 247-265.). Many public health centres are reluctant to make diagnoses such as ADHD, and consider agitation as a symptom whose causes are to be sought in the child’s emotional history and family dynamics. In this sense, they limit drug prescriptions and offer treatment based largely on psychosocial interventions. At the same time, an increasing number of professionals propose diagnosis and follow-up of ADHD. However, in many territories, these places of diagnosis and specialized follow-up remain relatively inaccessible, due to long waiting times in hospital services, and the financial cost of private consultations. It is interesting to note that, in the French context, there is an alliance between some of the professionals and the families of diagnosed children, constituted as an association to have the reality of this disorder recognized, along with the need for specific care. (Akrich; Rabeharisoa, 2018AKRICH, M.; Rabeharisoa, V. The French ADHD landscape: maintaining and dealing with multiple uncertainties. In: BERGEY M. et al. (Ed.). Global perspectives on ADHD: social dimensions of diagnosis and treatment in sixteen countries. Baltimore: Johns Hopkins University Press, 2018. p. 233-260.). In 2005, the introduction of the concept of “psychological disability” in the new Disability Act opened up the possibility of recognizing as a disability the difficulties faced by children with ADHD or behavioural disorders. Recognition of disability, which can be granted at the request of parents on the basis of a medical and academic record, entitles the child to accommodation (e.g. extra time for examinations) and financial or human assistance. These possibilities appear to be one of the elements in the parents’ search for a diagnosis of ADHD (Jupille, 2014JUPILLE, J. De « coupables » à « victimes actives » : enjeux pour les familles d’un diagnostic de TDA/H. Socio-logos, Paris, n. 9, 2014. Disponível em: <Disponível em: https://bit.ly/2sHrLlR >. Acesso em: 7 dez. 2018.
https://bit.ly/2sHrLlR... ). However, unlike in Chile, the resources allocated to schools are relatively small (except for “school auxiliaries”, staff with low salaries and little training in this area). It is also perhaps because of this fact that educational professionals are still relatively behind in the mobilization of this diagnosis in France.
ADHD from different perspectives: methods of investigation and analysis
In Chile and France, research teams have undertaken studies that combine the use of semi-structured interviews, discussion groups, and ethnographic fieldwork.22This work is carried out within the framework of an international and interdisciplinary network on non-conforming behaviours (www.nonconformes.org), including the participation of research teams from Brazil, Chile, France, and the United Kingdom. These two studies were not designed from the outset for comparative purposes, but their common points make it possible to develop joint analyses and propose avenues for comparative reflection. In both studies, we used two methodological strategies: the reflection on trajectories, such as the shifting not only of bodies and individuals but also of symbolic meanings and subjective positions, mixing the narratives of adults and children; and the incorporation into the sample of two collectives grouped around the ADHD diagnosis: an organization of Chilean adults with ADHD called Power Hunter Collective,33The Power Hunter Collective is composed by a core of 5 women, all over 40, who define ADHD as an evolutionarily different way of living. and the parent association called Hypers Supers TDA/H France.44Created in 2002, with approximately 5,000 member families in 2015. The specificity of this association consists in proposing an “integrated” approach to diagnosis that does not exclude psychotherapy, which remains the first line approach before medication.
In Santiago of Chile, the research involved ethnographic studies in 2 semi-private schools for 6 months, and interviews with 7 children (aged 8 to 12 years old) and their parents. To complete these data, we facilitated 1 discussion group with teachers who are confronted with ADHD in boys and girls aged 9 to 11, in their professional practice, 1 discussion group with adult men (aged 25 to 40), 3 semi-structured interviews with adult women (aged 25 to 40) who had been diagnosed and subsequently treated for ADHD or a similar condition (i.e., Hyperkinetic Syndrome, Hyperkinetic Reaction, Conduct Disorder with or without aggressiveness) during their childhood, and 1 group interview with the Power Hunter Collective. The objective of the interviews was to explore the experiences of the behaviours and problems associated with ADHD, the experiences and meanings attributed to diagnosis and treatment, as well as the way in which the diagnosis is articulated to the biographical trajectory of the individuals, both from the perspective of children and their parents. The objective of the discussion group was to analyse the discursive articulations beyond the singularity of each experience, and to identify the mode of socially available discourse repertoires (Ibáñez, 1979IBÁÑEZ, J. Más allá de la sociología: el grupo de discusión: teoría y crítica. Madrid: Siglo XXI, 1979.) which could participate in the configurations of the ADHD experience and cultural meanings attributed to it. In this article we focus in particular on interviews with parents of children diagnosed with ADHD and diagnosed adults, as well as on the results of discussion groups.
In France (Paris and Lille), we carried out ethnographic studies of care centres, families, and schools in neighbourhoods with contrasting socio-demographic characteristics. The project was to describe the different qualifications and actions deployed to think about the behaviours of children considered to be agitated. As part of this research, we conducted a specific study of families of children and adolescents diagnosed with ADHD. We contacted them through the parents’ association Hypers Supers TDA/H France. This corpus of interviews constitutes the material analysed in this article. It was built on interaction with 35 families with at least one child or adolescent diagnosed with ADHD (aged 7 to 20 years). We conducted 45 semi-structured interviews with these families, sometimes with the child or adolescent concerned him- or herself, and most often with one or more members of his or her family, as we sought to gather as many points of view as possible within the same family. The families who belong to this association have different positions with regard to diagnosis, but overall they are much more favourable to ADHD than the families we meet in other areas of research.
All the participants in this study, in Chile and in France, signed consent forms in order to meet ethical research criteria.
During these studies, we were able to access not only different populations (children, adolescents, adults) but also different points of view on agitation and hyperactivity (point of view of the people directly concerned, and points of view of others, especially parents). People were met through different channels (via associations, schools, health centres) and in different places. The analysis of these variations in points of view and contexts of enunciation was one of the driving forces behind our reflection.
For the analysis of the material, we have combined two methods. In the second part of the article, we use thematic analysis, a method for identifying, organizing and reporting themes found within a data set (Nowell et al.; 2017NOWELL, L. et al. Thematic analysis: striving to meet the trustworthiness criteria. International Journal of Qualitative Methods, Thousand Oaks, n. 16, p. 1-13, 2017.). This method has allowed us to analyze the set of interviews and to identify the different registers of ADHD experience. In the third part, we present case studies in order to describe biographical trajectories and the processes of subjective transformations associated with ADHD diagnosis. This method has allowed us to identify the conditions of emergence of different experience registers.
Three subjective experiences of ADHD diagnosis
Taking into account the variability of contexts between France and Chile, what are the subjective experiences of ADHD diagnosis expressed by the people we interwiewed in both countries? We have identified three experience registers that correspond to three ways of living and thinking about the diagnosis of ADHD: the deficit register, in which the disorder is experienced primarily as a failure of certain abilities; the disruption register, in which the disorder is experienced as disrupting the person’s life, personality, and interactions, which must then be normalized; and the hidden potential, in whichthe disorder is thought of simultaneously as a difficult and a valuable condition, a source of exceptional and extraordinary capacities that are often hidden in the ordinary functioning of social life.
As we will see, these three registers of interpretation also correspond to three ways of thinking about the links between the personality (who the person really is), their behaviours (what he/she shows in interactions, in everyday life) and the disorder. Some people have an “identity” use of the diagnosis, when they integrate ADHD as a dimension of character or personality. In other cases, ADHD is perceived as a disorder that affects the person while remaining outside of them, thus producing behaviours that mask their true personality. These ways of living ADHD are accompanied by different relationships to the pharmaceutical treatment.
We will consider the links between these three registers, which are neither separate nor exclusive. The participants’ experience often shifts from one to the other, in a subjective process, like between different voices on a music score. They can also correspond to different points of view and different moments in the person’s trajectory. Thinking about these articulations helps us to better understand the status and particularities of the hidden potential register.
In a first register, attention deficit and hyperactivity can be experienced as a deficit or a lack of capacity. The diagnosis focuses on what people cannot do, on problems of learning and performance. Thus, attention and concentration’ problems are rarely claimed as a source of pride. On the contrary, they can be experienced as stigmatizing, as in the case of Alicia, a 38-year-old Chilean lawyer who was diagnosed and treated with Ritalin when she was 8 years old. Retrospectively, she remembers how, when she was a child, the diagnosis had to be a secret among her peers and others in general because it was seen as shameful. Today, as an adult, she still has this feeling because in her experience, ADHD is a condition that represents a deficit. As she says: I had it as a girl, and well, I still have it, and I have acquired habits to avoid the effects of the disorder […] I have to put twice as much effort as a normal person […] I will die with it.
Furthermore, the diagnosis can be experienced as a possibility to give new meaning to the difficulties encountered, thus reducing feelings of responsibility or guilt. An example is the case of Pauline, a 20-years-old French women, diagnosed with ADHD at the age of 17: Not once did I think to myself: I have a problem with my brain or anything. For me, it was a question of willingness, it was not a question of capacity. Looking back at her childhood, Pauline tells of her difficulties in attending classes, in understanding, and how she integrated the image of laziness she got at school: The image I get every time, sometimes it’s hard to handle. I didn’t think it was legitimate for people to think I was lazy because I didn’t necessarily think I was lazy. I finally believed it. After the diagnosis of ADHD, she understood that her problem was not “a lack of will” but a problem of “capacity”. This allowed her to put words to her difficulties: I wasn’t aware of that […] I couldn’t say: yes, I have trouble concentrating. I didn’t even know what concentration was. I didn’t know there was a word for that. The word concentration makes sense for her, it sheds light not only on her academic difficulties but also on her difficulties in other areas, such as her isolation and communication problems with others for being “in the clouds”. Even today, she feels she has to fight all the time to do things right.
The interpretation in terms of capacity and deficit often leads to the idea of disease, as we can see in the case of 10-year-old Bastian, a 4th grade pupil in a subsidized private school of a middle-upper class area in Santiago. According to his parents, Bastian’s school problems began at the age of 4, due to his restless behaviour. Bastian understood that the problems arose because I behaved badly, I bothered others […] I stand to talk, [I made] heavy jokes […] I moved a lot when I was little. Bastian’ parents report that his school trajectory has been difficult, distressing and full of punishments, behavioural problems and experiences of bullying (by teachers and students). He therefore began consultations with professionals (psychiatrist, psychologist, educational psychologist, differential teacher, etc.) and the use of methylphenidate from the age of eight. Bastian’s parents believe that the ADHD is due to: genetic factors, family history and previous experiences (expulsion from two schools, punishments etc.). Bastian’s father identifies him as a “disabled person” with “different learning abilities”. For Bastian, the treatment has been for his own good: he can behave better and avoid failing a year. The presence of the diagnosis and the use of the drug seem to make Bastian adopt a logic of treatment that allows him to recognize what is expected of him (academically and behaviourally) and his way of being. He concludes that it is uncomfortable to be told what to do all the time; it is necessary to be comfortable in order to have better results at school.
The people who ascribe to the register of deficit/capacity insist on the dimension of overcoming their problems and rehabilitating their capacities. In this way, the pharmaceutical treatment is seen as one of the ways to improve performance, to make oneself capable of accomplishing certain tasks or activities. Any results are then attributed exclusively to the medication and not to the subject’s abilities. As Alicia comments: [the drug] is magic in my body, or in my head, that made me understand what I was reading, I could answer what they asked me, understand what the teacher said in class. Bastian’s mother also says: [Bastian] has to be on medication, because without medication he does not work. The efficacy of the drug may also be one of the elements that validates the disease, like in Pauline’s case, where the effects of the methylphenidate-based medication convinced her by making her able to concentrate and to read books.
In a second register, hyperactivity can be presented as a disorder that disrupts normal functioning. This emphasizes the deviation from the norm, that is, deviant behaviours in relation to social expectations in different contexts. In this case, agitation is often in the foreground. People insist on their efforts to regulate or normalize the situation, and their struggle to avoid problems and to be accepted. Interviews show the importance of the school context in this experience of disruption. It is often at school that problems have crystallized, as the child is seens as one who disrupts the group’s work through excessive movement, and who creates disorder (fights, group movements) in the playground. Parents’ narratives show the diversity of ways in which the school context constructs their child as “non-conforming”. They most often cite teachers’ complaints, but also mention the disapproving looks and remarks of other parents, who sometimes do not wish to invite their child to birthday parties. Many parents believe that other childrencontribute to provoking their child and triggering aggressive reactions.
However, this experience of disruption can take place in two different types of interrelationships between school, family, and diagnosis. In the first configuration, the family distances itself from the idea of a problem (it is the school that considers there is a problem, not the child and his or her parents), and from the diagnosis of ADHD which is experienced as something imposed by the school. We see this in the case of Pablo, a Chilean 8-year-old boy in 3rd grade in a low-income school on the periphery of Santiago. He does not recognize himself as a child who has school difficulties or bad behaviour, since it seems to be a personal decision to write or do homework, or not, because he finds it very boring and prefers to play in the fields and at the river near to his home. His mother claims that the school’s insistence on the diagnosis of ADHD was due to the teacher’s opinion and not for Pablo’s difficulties. She commented: the teacher wants the children to keep sitting doing nothing […] to sit like mummies. […] I don’t believe much in the illness of children, I think it’s more a lack of rules.
In a second configuration, more present in the French investigation, parents insist on their efforts to get their child accepted by the school. For instance, they make arrangements to involve themselves in the school, and to establish special links with the teachers. These parents insist on their efforts to keep their child in a regular school. The challenge is to distinguish themselves from the image of poorly raised children with incompetent parents, whom they associate with more disadvantaged social backgrounds. In this configuration, the diagnosis is often used by parents as an argument to discuss with the school. It allows them to say that their child is not badly brought up or responsible for his or her actions, but that he or she suffers from a neurological disorder justifying particular care.
In this modality of ADHD experience, the relationship to the medication is generally positive, for different reasons. First, because it limits embarrassing behaviour, allowing the child to work, as Paul’s parents tell us:
Paul is still taking it now. It really helped with the schooling, well, it kept things within limits. Paul was not violent at home, nor after that in his teens. He wasn’t violent at school, so there were no serious problems. But it allowed it to be kept […]. It was still a great help, a definite help. (Paul’s mother, French adopted boy, diagnosed at 11 years old)
Second, some parents believe that the drug has revealed their child’s true personality. Damien’s parents express this very clearly: We met our son, really as he is, when he was 12 years old, when he was on methylphenidate. Before that, we didn’t understand him (Father of Damien, French boy, diagnosed at 6 years old). This understanding of the effects of the drug reveals a certain way of conceiving of the links between the diagnosis and the child’s behaviours and personality. The child’s personality and ADHD are two distinct entities, and behaviours do not express the child’s true personality, they can even mask it because the disorder produces problematic behaviours that impose themselves on the child and mask his or her true intentions. This representation of the child is reflected, for example, in an expression used by several French parents: “being nice deep down”. With these words, parents indicate that their child’s true character is kind, contrary to what his or her actions might often suggest. They think that this requires time, work, a conversion of the view to read their true nature beyond the most visible external signs:
In fact, Gaspard is very nice deep down, so all the teachers loved him very much after all because, in the end, he was a little boy who helped a lot. But I can assure you, I understand why they sometimes wanted to throw him out the window. (Mother of Gaspard, a French boy, 7 years old)
In some other discourses, the diagnosis of ADHD is associated not only with difficulties but also with exceptional abilities. Hyperactivity appears as a creative form of life, allowing the ordinary individual to develop or to exploit new personal capacities. People develop a whole set of meanings in this register: performance (speed, multitasking, intellectual performance), creativity (brilliant or inventive individual), charisma (ability to train others, to be a leader), broad perspective (the ability to cover a large number of topics), sociability (extraordinary sharpness and sensitivity in social relations). For example, Nathan, a 17-year-old French adolescent, who had many behavioural problems at school and at home, was diagnosed with ADHD at age 7. His mother recounts his difficult school career but also insists on the fact that from an early age Nathan was a very “bright” child, a “leader”, full of ideas and who “pulled his friends up”. She does not speak of “ADHD” but of “hyperactivity”, which she presents as a family characteristic. She herself was diagnosed with hyperactivity after Nathan’s diagnosis, and she identifies other people in the family who, in her opinion, are (or have been) “hyperactive”, even if they have not been diagnosed. Nathan also presents his “hyperactivity” as a characteristic that creates difficulties for him (for example, difficulty in reacting spontaneously, because he always needs to think before answering even a simple question), as well as assets (a quick and detailed understanding of situations and interactions, which he summarizes by the term “acuity”). Hyperactivity is for him an essential dimension of his personality, as he says:
I am hyperactive, in a way. I am it, I suffer from it mostly. If someone tells me that hyperactivity doesn’t exist - whoever, because there are so many critics -, that even the word doesn’t exist, it’s as if I was told I didn’t exist. That’s horrible. That’s more than offensive. It’s like I’m being attacked.
During the interview with Nathan and his mother together, they discuss with each other a definition of what hyperactivity actually is, identifying their common ground (their alertness, their ability to do several things at once) and comparing themselves to other family members.
But the individuals concerned insist that these exceptional capacities are not constantly expressed. They strongly feel that such abilities are masked in many contexts of ordinary life: for example, because the environment is intolerant of the motor manifestations of hyperactivity, or because society is unsuited to the expression of these extraordinary capacities (Nathan’s mother says that Nathan disrupted the kindergarten because he understood the rules of the game too quickly), or because the person, due to his or her capacities, cannot enter ordinary social play (the case of parents who say their child cannot stand rules set by people whom they perceive as mediocre). For example, the Chilean adult men participating in a discussion group denounced the excesses of a social norm that dismisses the singular differences and the potentialities inherent in childhood. Likewise, the group criticized the school system, which they said focused exclusively on teaching strategies and on its injunction to self-regulation. The discourse of these men concentrates on the limitations imposed on the unfolding of singular potentialities, on stigmatization and the promotion of an identity articulated to the figure of the “problem-child”, and on the rejection of diversity or other forms of learning. In other words, these former ADHD men disarticulate the very condition of the alleged “deficit”. In this way, they defend precisely that difference which, in their childhood, would have been discriminated against, but which, in their adolescence and adulthood, would have been the very source of the expression of special talents and different cognitive styles, which would have found their destiny in music, theatre, cooking, sport or even pedagogy.
The experience of fighting against limitations could be better understood from the collective point of view developed by the previously announced Chilean group named Power Hunter Collective (PHC). The concept of “hunter” is taken from Tom Hartmann’s (1997HARTMANN, T. Attention deficit disorder: a different perception. Green Valley: Underwood Books, 1997.) book Attention Deficit Disorder: A Different Perception. This book proposes an evolutionary hypothesis where ADHD represents adaptive difficulties of hunter-gatherer individuals within (the more recent) farmer societies. The hypothesis is that these differences are considered difficulties because modern societies are expecting everyone to be farmers, and despise the hunter characteristics. The essential traits are the same ones referred to by the PHC members. At the same time, these individuals say they continuously felt similar to the “problematic-child”, which caused them to suffer. They all shared the feeling of not fitting in anywhere, especially in relation to their school classmates. Problems related to the difficulties of attention, of finishing or delivering tasks on time, of complying with schedules or aesthetic standards, pursue them, as much as the will to understand them. Identifying with the diagnosis is then the result of a personal search for self-understanding, constructed almost immediately through the “hunter” category, as a non-pathological modality of understanding the traits that are considered characteristic of individuals with ADHD. Daniela was the first to associate her sensations with the diagnosis and, during a trip to the United States, she discovered a non-pathologizing signification via the hunter theory. Upon her return to Chile in the early 2000s, she continued her research through various books, engaged with health professionals, and then decided to form a group with people having similar traits to those she had identified in herself.
It is interesting to consider how in this narrative the biological root of the condition is not questioned but serves to effect a possible depathologization. At the same time, this depathologization does not necessarily imply a “de-medication”, since the use of Ritalin is rather strategic, responding to certain demands of the environments in which it is used. In fact, depathologization is more a reversal of the signification of the same descriptions that were used to define these behaviors as a disorder. The dispersion, the excess of physical energy, the restlessness, the attraction to images, and so on, are now understood as different attentional capacities which are literally valorized. Hartmann, like the Power Hunter discourse, sees the figure of the entrepreneur as the opposite to the sedentary office worker (that is, the farmer figure). And this possibility to stabilize their different attentional capacities is considered valuable in economic terms, as an important element in the emergence of the positive sign of those characteristics, previously judged simply as a deficit.
As we can see, people seek alternative contexts and activities that can reveal their special abilities or “hidden potential”. In this type of experience, they may consider that pharmaceutical treatment allows them to exploit their potential, or on the contrary masks their abilities and their true personality (by making them slower, less sociable or less funny).
Interpretations and reinterpretations in individual and collective trajectories
These three registers (deficit, disruption and hidden potential) can be present at the same time in an individual experience. But it is interesting to note that for some people and at certain times, the emphasis is placed more particularly on one of the three.
We have found that the meanings associated with the ADHD diagnosis evolve according to the moments in the life trajectory of individuals. It seems that at the beginning of a child’s schooling, the description is concentrated on academic issues, and the narrative tends to focus on the deficit register (based on an expectation of academic performance) or the disturbance register (based on an expected discipline and self-control). The idea of hidden potential seems to emerge in a second stage, for adolescents and adults, when different social scenes (work, sociability) change the definition of the person and their difficulties. In other words, the registers of disruption and deficit are closely linked to the relationship that people have with institutions that play an important role in childhood: school and medical institutions.
The register of hidden potential is different from the other two because it is much more often a retrospective discourse; it is from the diagnosis that people read their biographic trajectory retrospectively, reinterpreting different episodes of their lives. When the narratives of the diagnosis are based on a “neuro” vocabulary, the idea of ADHD as a neurological disorder focuses on a particular brain, with its own deficits, capacities and assets. The positive connotations available around hyperactivity provide ways to give new meaning to the difficulties encountered, or even to reverse the stigma associated with it. In these cases, people often talk about a revelation or awareness: at some point they understood that their difficulties had to be interpreted differently, that they were of a different nature, and that they could be assets.
Compared to the other two registers, the hidden potential register is therefore more often an adult discourse. The respondents’ stories focus on subjective transformations over their life’s course. They show how certain changes in biographical trajectories make it possible to reinterpret the diagnosis of ADHD as the unveiling a hidden potential. The period of schooling is often experienced as particularly difficult, after which the idea of hidden potential is often developed during adolescence and adulthood, when the person is less subject to immediate educational requirements, and is able to make choices (e.g., educational orientation, profession, lifestyle). This may explain why the discourse of hidden potential is rarely expressed by children themselves: it is rather developed by parents, about children. Parents facing their child’s current difficulties identify signs of exceptional abilities and hope that later in adult life, the person will be able to make choices that would allow these particularities to express themselves and to be recognized.
These interpretations are often linked to the idea of genetic or family transmission. In this sense, the experience of hidden potential is a collective experience. It is often found that a person’s diagnosis leads to retrospective identifications in the family environment: for example, when one of the parents is diagnosed after his or her child, or when people read the family history retrospectively and consider that other family members were probably hyperactive, even if they were not diagnosed. We then observe exchanges of points of view in the family, re-readings of the family history. During these discussions, people build meaning, collectively appropriating the diagnosis. For example, they seek to identify moral similarities, and to understand what traits or qualities have been passed down from one generation to the next. People diagnosed as hyperactive are then reintegrated into a family history. These collective reflections help to crystallize the qualities associated with ADHD (e.g. speed, and the ability to do several things at once) and to consolidate the discourse of hidden potential.
The hidden potential register therefore describes a particular experience of ADHD. We can speak of reinterpretation, either because this interpretation appears during the life trajectory, replacing other interpretations that were previously more present, during the school period; or because this interpretation, shaped by the point of view of others, is an interpretation of adults about children’s experiences. These reinterpretations tend to counterbalance the negative aspects, transforming them into a positive vision based on the available expert discourse.
The ecological niches of ADHD as hidden potential
The previous section distinguished three ways of living and thinking about ADHD. The hidden potential appears as a register of experience that is not present for all people. It is a reinterpretation that emerges for some people, in certain contexts of enunciation, at certain points in their life trajectory. This observation invites us to explore the conditions of different possible ways of experiencing ADHD in the register of hidden potential. What are the social conditions that make this discourse possible? How does this social and normative ideal shape people’s daily lives? Are these experience registers presented in exactly the same way in both national contexts? To answer these questions, we used case studies to understand how the experience of ADHD is shaped by everyday life contexts, social positions and trajectories, as well as the relational issues within families. These case studies suggest that the experience in terms of hidden potential is based on various types of conditions. They make it possible - to use the expression proposed by Darmon (2003Darmon, M. Devenir anorexique : une approche sociologique. Paris: La Découverte, 2003.) in her work on the trajectories of anorexics -, to identify the “socio-historical places” in which the experience of ADHD as hidden potential is rooted. Finally, we will focus on the importance of the institutional context and the “ecological niches” (Hacking, 2002HACKING, I. Mad travelers: reflections on the reality of transient mental illnesses. Cambridge: Harvard University Press, 2002.) that shape the relationship of individuals to the diagnosis.
Lucas: becoming a writer or a psychopath
Lucas is a 17-year-old French adolescent. At a time when Lucas was nearing the end of his schooling, we met his parents to ask them about their experience with their son’s ADHD. They shared with us their fears about Lucas’ entry into adult life. Annick, his mother, and Dominique, his father, traced the “first signs” back to Lucas’ earliest years: he was a baby who slept little, showed “irrepressible physical activity” and “exhausted” everyone around him. That was why babysitters often refused to take care of him. The kindergarten teachers reported that “he is not normal like other children. He is out of his body”. Annick gradually realized that Lucas was “intelligent but a little bit different from the others”.
Because of Lucas’ behavioral problems and excess energy, the educators told his mother: You shouldn’t leave him until 6 pm like other parents. You have to pick him up at 4 pm. As a result, when Lucas was five, Annick interrupted her professional activity as a saleswoman to spend more time with him. Annick and Dominique present themselves as mobilized and combative parents who “saved” their son at the cost of very difficult times and many sacrifices, including financial ones. They talk about a time-consuming and never-ending quest for treatment, but paediatricians and psychologists in public centres tend to say that everything is fine. When they began to suspect the presence of hyperactivity, they did not consult a specialist because they feared the prescription of a pharmacological treatment. Since they wondered whether Lucas’ problems were due to his precociousness, they had him do an IQ test when he was seven. As the parents expected, Lucas obtained a high score.
However, the school problems continued, and when Lucas was 14, he was diagnosed with ADHD. Receiving this diagnosis brought relief to the parents. I assure you it’s a relief, because finally we can say what’s going on […] it’s not us, it’s not that he’s stupid either… it’s chemical (Annick). Then they began to consult different professionals and try different treatments: neurologist, psychomotor therapist, sleep disorder specialist, and even a gluten-free diet. A treatment with Ritalin was started and then stopped because Lucas complained and did not take the treatment regularly. It makes me stupid, he said.
Dominique and Annick consider that ADHD is insufficiently recognized in France and that professionals are not trained to treat this disorder. In this context, they sought practical advice that would enable them to interact with Lucas, which led them to join an association of parents of bipolar young people. They did not think that Lucas was bipolar but the practical situations that the parents of this association mentioned were very similar to their own experience. Annick and Dominique’s efforts to find the right way to deal with Lucas’ problems were associated with the belief that their child was “on the edge”. On the one hand, they described an “extraordinary”, “brilliant” and “charismatic” child who learned to read books and to do “extremely skilled” things at an early age. He has something magnetic, charismatic. If he decides something everyone follows him. He is one of those people who are both hated and adored (Annick). On the other hand, they also described a disruptive child who has great “problems with authority and rules”, and difficulties in respecting the conventions and codes of ordinary social interactions. They linked these difficulties to Lucas’ “intelligence” and his “uncompromising” character. In other words, Lucas could develop exceptional abilities, but there was also a risk of him falling into delinquency.
Dominique and Annick developed the idea that their son had extraordinary abilities that teachers had difficulty recognizing, and which therefore could not be expressed in the ordinary functioning of the school. This is why they sought the right environment in which Lucas’ abilities could be recognized and developed. When Lucas was enrolled in specialized a private school for children struggling to stay in the traditional system, the teachers wanted him to leave:
They [the other students] were not hyperactive. There were some who were very dyslexic, dysorthographic, dyspraxic. Not hyperactive like Lucas. And the teachers didn’t understand that intelligence. They told us: “Look, we don’t understand this kind of child. It’s beyond our skills, but he’s smart, you have to put him back in the normal circuit”. (Annick)
On one occasion, one of Lucas’ teachers told them that he should leave school because he had a lot of trouble studying. However, some months later he came back to them to apologize. As Annick remembers:
The teacher said: “I apologize, I wanted to tell you that you have a son who is brilliant. Your son can write, do you know what that means? This young man can write books”. I know that Lucas will be able to do it. We know that Lucas has enormous potential […] When that teacher said that, I said to myself: “okay, we’re onto something here, because this man is very demanding”. We’ll find him a school, he’ll do the curriculum, and one day or another, like a little flower, he’ll come out of all these brambles and he’ll do something! But what a price we paid [she cries]. What a price he paid. It’s very hard.
Annick and Dominique’s discourse is strongly influenced by the way they think about their own biographical trajectories and the idea that ADHD is genetically transmitted in their family. In this sense, Lucas’ diagnosis allowed them to reinterpret their own trajectories. Indeed, Annick was also diagnosed with ADHD after Lucas.
Dominique was a precocious child like Lucas. […] And his father was too. So there is a lineage of precocity. […] He’s a gifted person… (Annick)
My father died at 45. It’s quite mysterious. He had neurological or psychological problems, we didn’t know much. He was taking neuroleptics. […] My brother and I tried high school and college, but we weren’t part of the social classes that have been doing that for generations. […] so I went back to a manual job [carpentry]. […] Today I see little Lucas who is trying to be an artist. It’s a curse in the family! [laughs] […] There’s a filiation in all this. (Dominique)
In this way, artistic activity appears as a space where it is possible to exploit the hidden potential and singular capacities that Lucas has received transgenerationally. These capacities, which the father could not exploit due to limited resources in his original social context, place Lucas in a borderline position that the ADHD diagnosis can designate. This situation, as the parents themselves suggest, creates the conditions for Lucas to become either a “great writer” or a “psychopath”.
Agustín: the restless entrepreneur
Agustín is a 27-year-old Chilean, who belongs to the middle-upper socio-economic class and studied administration at university. According to his story, from the age of four he presented behavioural problems, which were accentuated with his entry to primary school. These problems were reflected in his poor school performance, which got worse during high school, causing him to fail the year at the age of 16. Given his behavioural problems and school performance, he was referred to a psychologist and an educational psychologist, and later to a psychiatrist in the private health system, who diagnosed him with ADHD at the age of ten. Once he was diagnosed, a pharmacological treatment with methylphenidate began. This seemed to be effective at the beginning, as he was concentrating more during classes. However, after a year he felt that the medication was no longer effective, so he and his family decided to stop the treatment.
During the diagnostic process and the pharmacological treatment he was accompanied by his mother, who followed the recommendations of the school and the psychiatrist in the hope of finding alternatives to improve Agustín’s behaviour and academic performance. To Agustín, school always represented intense boredom and also involved situations of humiliation by his teachers. Despite his efforts, he continuously felt that he failed to meet the expectations of others. Based on this experience, Agustín began to accept the diagnosis and started to identify himself with it, as an illness that prevented him from concentrating and performing as required. He noticed moreover that, as the character of the illness made adults more tolerant of his behaviour and performance, he could “take advantage” of it and avoid family and teachers’ punishments.
Unlike the period of childhood, in adolescence he transformed his “deficit” into “different capacities”, and was able to transform the meaning of the diagnostis: I had a harder time at school, but there were other things that I felt I was good at and liked, such as computing and sports. As he felt inferior in the academic real, he explored his sports skills, finding an alternative to stand out above the average of his peers. According to him, by constraining “different” behaviours, the traditional education system contributed to hiding other abilities, whereas alternative spaces would allow the recognition of diverse ways of confronting what is considered a deficit.
I’ve learned that [academic work] is something I’m not good at [laughs], so it’s not where I should spend my energy, because in the end all I’m doing is swimming against the tide […] I realized [my abilities] as I failed at other things.
As a result of this new relationship with his diagnosis, Agustín started reading about ADHD. This led him to a new definition of the diagnosis which played an important role in the transition from deficit to potential.
I was struck by the fact that the guy said that [ADHD] is not like a pathological thing […] But it was just that he wasn’t empowering his abilities and his interests […] That made me feel like… Liberated… All this time I’ve been thinking that things are difficult for me, and it was just that things that I don’t like are difficult to me […] That feeling of liberation, of taking a backpack off my back, and thinking about it, made me change my perspective.
After entering university, Agustín began to construct an explanation of himself where his difficulties led him to a process of “self-knowledge” that would allow him to recognize his own capacities, differentiate himself from the rest, and choose an alternative life: It’s important to know yourself, to know where to guide your life, and when you’re a kid, that’s really hard, because you try to follow the rules and stereotype of the child as a good student. As Augustine’s narrative suggests, the diagnosis can be transformed into a positive experience that leads to self-knowledge and allows the unveiling of the hidden potential.
It is necessary to live it [ADHD] in order to understand oneself, because I think a lot of people follow the normal path only because it’s what they’re supposed to. But those people I think don’t know themselves well and they’re forced to follow the [traditional] path, like they’re forced to like it and some people end up liking it, but it doesn’t come naturally to them […] I believe that [the diagnosis] affects some things, but it also helps you understand yourself. By better understanding yourself, you can see what you are good at.
Agustín recognizes that in order to unlock the hidden potential of ADHD, the way adults communicate the diagnosis to the child is important.
I think [before communicating the diagnosis] I would identify the skills at which the child is good, it could be music, or his interests… and then you would have to tell him: “look, we all have different skills”, and then I would explain to the child that he may have [other] skills.
He argues that his mother’s recognition of his “other interests”, abilities and distinct characteristics contributed to the understanding that we are all different and we have different abilities. His encounter with these “different capacities” has allowed Agustín to resume his childhood’ interests and make them converge with his working life (aspects of himself that in the past were problematic, are abilities in the present). In this sense, he has begun to look for new spaces where he can exploit his abilities, using for example his “curiosity” and “restlessness” to start a business in the field of information technology.
This case shows that economic and cultural capital, along with access to alternative discourses on ADHD, could allow other social meanings of the diagnosis, making a shift from deficit to potential. Access to a private teacher, evaluation and treatment with a psychiatrist, first line drugs such as Ritalin rather than methylphenidate (commonly provided in the public health system), music classes, sports, and psychotherapy, among other resources, allowed Agustín to develop personal capital that contributed to the emergence of the idea of hidden potential.
More generally speaking, in the different cases studied, the decisive point was probably not the fact that these individuals were diagnosed with ADHD, but rather the fact that they were able to attribute socially valued meanings to it. Their life trajectories point to different conditions of this reversal.
A first set of conditions concerns proximity or familiarity with medical, evolutionary and neurological discourse and practices, as well as with a wider range of legitimate registers on the interpretation of the symptoms: being able to rely on professional care and “psy” perspectives, but also having access to literature offering new ways of understanding the disorder, meeting other people who have had the same diagnosis.
A second set of conditions refers to these individuals’ activities and resources. In the discourse of adults witnessing their own experience, different conditions appear that make it possible for the discourse of hidden potential to emerge: being able to rely on a support network, having activities, interests or a job sufficiently valued to allow them to think they have exceptional capacities and creative potential. From another point of view, parents who hope for their child’s abilities to be revealed are also those who can afford to invest to enable this to happen. Many invest (time and money, as Agustin et Lucas’ parents) to fight against their child’s academic devaluation, by negotiating with teachers, and paying for extra classes and private schools. But if we look more closely, it is probably not so much a question of financial means as one of ideals of success, of relationship to the norm, and of ability to distance oneself from the academic norm. Based on a series of case studies, we can posit that in the upper classes, exceptionality seems to be more tolerated than at the lower socio-economic levels (Eideliman, 2008EIDELIMAN, J.-S. “Spécialistes par obligation” : des parents face au handicap mental: théories diagnostiques et arrangements pratiques. 2008. Tese (Doutorado em Sociologia) - Ecole des Hautes Etudes en Sciences Sociales, Paris, 2008.). In the upper classes, learning the codes of “distinction” is part of everyday sociability (Bourdieu, 1975BOURDIEU, P. La distinction : critique sociale du jugement. Paris: Minuit, 1975.) and success can be achieved through resources other than academic qualifications. In the lower classes, where the perception of inequality of status is strong, the objective is not distinction, but rather non-differentiation by normalization. To use the term proposed by Skeggs (1997SKEGGS, B. Formations of class and gender: becoming respectable. Thousand Oaks: Sage, 1997.) in her study of working class women, it could be said that the least privileged families seek above all a form of “respectability” that leaves little room for the idea of non-standard, potentially distinctive but immediately disturbing capacities. The more social support and cultural, economic and symbolic resources one has, the easier it is to identify difference with being exceptional? It is highly probable that people with the most cultural, economic and symbolic resources can more easily allow themselves (or their children) to be perceived in terms of creative talent or artistic vocation, both of which are paths to success that are highly valued socially but uncertain and not immediately economically profitable.
A gendered experience?
Another question emerges strongly from our corpus of interviews related to the interrelationships between gender, relational configuration and social belonging. The social construction of genders and the values attached to them seem to produce different responses to life’s tensions (Cousteaux; Pan Ké Shon, 2008COUSTEAUX, A.-S.; PAN KÉ SHON, J.-L. Le mal-être a-t-il un genre ? Suicide, risque suicidaire, dépression et dépendance alcoolique. Revue Française de Sociologie, Paris, v. 49, n. 1, p. 53-92, 2008.). In our studies in Chile and France, it is almost exclusively men who describe themselves or are described in the register of hidden potential. Is it because this vision in terms of hidden potential refers to dispositions more often associated with male socialization? Is it because children’s descriptions are taken from gendered norms and expectations, that physical activity, energy expenditure, and mobility are valued more in men than in women, and that intelligence is associated more with men than with women? It has been shown in the French corpus that connotations of attention deficit and disability are more often associated with girls, while boys are more often described in the register of speed and hyper-intelligence (Béliard et al., 2018BÉLIARD, A. et al. Le TDA/H, un diagnostic qui agite les familles : les quêtes diagnostiques autour d’enfants agités, entre rupture et continuité. Anthropologie et Santé, Paris, n. 17, p. 1-21, 2018. Disponível em: <Disponível em: https://bit.ly/2FVxe01 >. Acesso em: 3 dez. 2018.
The retrospective identification of several hyperactive persons in the same family is interesting, because it shows the criteria on the basis of which these persons are identified as hyperactive, and how the defects and qualities associated with the disorder are distributed among the different persons in the family. They are often distributed in a gendered way, with the most positive connotations being attributed to men. For example, when Nathan and his mother talk about other hyperactive people in the family, they think first of all of creative and intelligent men who were not adapted to academic expectations but who had prestigious careers as adults. Nathan’s mother was diagnosed with hyperactivity following an episode of work stress and depression. She says that before she had this diagnosis, which she had not directly sought, she had never thought that she could be overactive because she was above all “shy”, “lost” and “useless”. This is consistent with results regarding how people appropriate other diagnoses with strong positive connotations, such as “high potential” or precocity. For example, Lignier (2012LIGNIER, Wilfried. La petite noblesse de l’intelligence : une sociologie des enfants surdoués. Paris: La Découverte, 2012.) shows that the over-representation of boys among children diagnosed as precocious can be linked to the views of parents, who interpret girls’ excellence as a form of adaptation or conformity to academic expectations, while boys’ excellence is more thought of as psychological, as a characteristic inherent to their personality, potentially problematic for the school.
In this matter, the case of the five members of the PHC is interesting, because it can appear as a counter-example: here it is women who claim the hidden potential for themselves. But it can be assumed that it is no coincidence that there is no equivalent group of men. Is the fact that these women had to mobilize collectively and use many social resources related to their privileged social position to claim their “hunter” identity and think about the hidden potential of women, not indicative of the fact that these positive meanings are socially more widespread for men, and easier for men to mobilize in day-to-day life?
Experiences in national contexts
Our investigations revealed differences between the two sets of interviews: French and Chilean. The first difference concerns the presence of the hidden potential theme. This theme was more prevalent in the Chilean interviews. It was less immediately visible in the French interviews, and was really developed only in a few situations. This is probably partly because the French study focused on children’s situations. We only met a few young adults. But other hypotheses can also be formulated that refer to the institutional context of each of the two countries. The lower penetration of the diagnosis of ADHD in France undoubtedly makes the meanings related to this disorder less present, less socially available. On the other hand, in Chile, the high rate of diagnosis and the debates about possible over-diagnosis, as well as mental health policies dedicated to this disorder, probably make meanings in terms of hidden potential more present. It is also necessary to consider the contours that the ADHD entity has taken in both countries. In the Chilean context where neurobehavioural approaches are clearly dominant, the idea that the disorder is part of the person, being located in the brain, is more widespread, probably making it more necessary to compensate for this intrinsic deficit with associated qualities. In the French context, where psychodynamic approaches still play an important role, many parents have a more complex representation of the disorder and its causes. They often associate causes located in the brain with contextual elements, referring to family history and the development of the child’s psyche. Disorder is not a defining characteristic of the child, and it may be less necessary to balance the negative aspects.
The other difference concerns the relationship to the diagnosis in the experience of hidden potential. In the French context, people who experience ADHD as a hidden potential do not question the diagnosis of ADHD and have a strong identity investment, making hyperactivity a character trait. In the Chilean context, even among those who have strongly adopted the discourse of hidden potential, one can find forms of distance and doubt with regard to the diagnosis, often experienced as having been imposed by the school. These differences reveal the particularities of the ecological niches of diagnosis composed by health policies, and the relational configuration between schools, families and health centres. In Chile we find faster routes, as children are transferred more quickly to centres where ADHD is diagnosed. The reference to a medical standard and the hypothesis of ADHD comes more often from school professionals, including in situations where children and parents interpret problem behaviours more as difficulties in relation to school discipline. This may explain why children and parents more often have the impression that the idea of ADHD comes from the school, and are critical of the school’s “medicalizing” vision. On the other hand, in France, many of the children we met had their first care in a public health centre where no diagnosis was made. Overall, their parents have bad memories of these follow-ups, based largely on psychotherapies, in which they remember professionals blaming them. They have often taken active steps to contact other professionals and seek a diagnosis of hyperactivity. For many, this diagnosis has made it possible to return to school with a different explanation of their child’s difficulties, and to seek a more comprehensive view of the children. The diagnosis thus plays an important role in parents’ efforts to negotiate with the school. The French parents we met told us that they had to convince teachers that their child had a medical problem, that ADHD is a real disorder and is not a disciplinary or educational problem. This particular French moral context created by controversies, where hostile discourses oppose the diagnosis of ADHD and claims for recognition of a disorder considered real and yet poorly known, may be contributing to a polarization of ADHD experiences: from the sceptical and cautious use of the diagnosis to the militant discourses and strong identity investments that we have observed in the register of hidden potential.
Our analyses revealed that ADHD diagnosis may lead to different subjective appropriations and may have multiple cultural meanings. Our initial aim in this frame was to reflect on the emergence and mobilization of the ideal of “hidden potential”. While crossing this motif with a body of empirical material taking into account a variety of cultural and social contexts, we have relativized the register of hidden potential: it is only one register among others and its mobilization or non mobilization depends on variables we have undertaken to identify.
The set of hypotheses articulated around the idea of “hidden potential” has shown its relevance. The new normative and moral context, linked to value transformations and the development of neuroscience, provides a set of meanings that shape the experience of some people diagnosed with ADHD. These meanings strongly associate the person, their brain and the disorder. They provide support for a positive view of ADHD, a non-pathological one that transforms difficulties into assets, insisting on exceptional abilities that are not very visible or recognized in many scenes of social life. In that sense, the possibility of experiencing ADHD as a hidden potential seems to be linked to a very particular historical and normative context, combining recent transformations in the conceptions of the individual and reconfigurations of scientific knowledge (unabling to see ADHD as the expression of biological diversity).
But our investigations also show that at this same historical time, this idea of hidden potential does not make sense for all those affected by ADHD. Beyond the major historical and political variations, it is therefore a reflection of variations within the same society. At the end of our analysis, the hidden potential register appears as one of the modalities among several ways of living and thinking about ADHD. We have thus showed how the historical, normative and moral context, as well as reconfigurations of scientific knowledge, provide a set of meanings that shape the experience of some people diagnosed with ADHD as deficit, disruption or hidden potential.
We have therefore invited reflection that identifies the factors explaining the mobilization or non-mobilization of this register, with particular emphasis on socio-economic variables, on the gender variable and on the institutional context (role of the school) and on relational configurations. In this way, the experience of the diagnosis of ADHD is the result of the interaction between a singular experience and trajectory of an individual with social attributes (age, gender, social status and place in a family configuration), a normative system (social ideals, values and norms) and an institutional configuration (health policies, schools and care).
We thank our colleagues from CERMES3, LAPSOS and LICHSS, as well as the participants in the workshop Niñez Disruptiva, Adultez Disconforme (Santiago, November 2018) for their discussions and support in the development of this article. We are grateful to Liz Carey Libbrecht for her help in writing this article in English. We also thank the journal Saúde e Sociedade and the anonymous reviewers.
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- 2This work is carried out within the framework of an international and interdisciplinary network on non-conforming behaviours (www.nonconformes.org), including the participation of research teams from Brazil, Chile, France, and the United Kingdom.
- 3The Power Hunter Collective is composed by a core of 5 women, all over 40, who define ADHD as an evolutionarily different way of living.
- 4Created in 2002, with approximately 5,000 member families in 2015. The specificity of this association consists in proposing an “integrated” approach to diagnosis that does not exclude psychotherapy, which remains the first line approach before medication.
- 1In France, this article is part of the research “The meanings of agitation in childhood: individual paths, family dynamics, professional practices” which received funding from the Institute of Public Health Research (IRESP) and the Pfizer Foundation. In Chile, this article is part of the research project “Trayectorias de malestar en niñas y niños diagnosticados con Trastorno de Déficit Atencional e Hiperactividad (TDAH): experiencia subjetiva y social de un sufrimiento multiforme”, which received funding from the Concurso de Fortalecimiento de Productividad y Continuidad en Investigación (FPCI) of the Faculty of Social Sciences of the University of Chile, as well as from CONICYT through its International Cooperation Program: Support for the Formation of International Networks between Research Centers (2017), nº REDES170095. Álvaro Jiménez-Molina received a grant from the Millennium Science Initiative of the Ministry of Economy, Development and Tourism, “Millennium Nucleus to Improve the Mental Health of Adolescents and Youths, Imhay” fund.
09 Dec 2018
10 Jan 2019