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The VOICES study involved at least one radical move in the decades-old debates about attention deficit hyperactivity disorder (ADHD) diagnosis and stimulant drug treatments: to systematically investigate young people's perspectives and experiences so that these could be included as evidence in social, ethical and policy deliberations about the benefits and risks of these interventions. The findings reported in this article were both surprising and unsurprising to us as researchers. We were surprised at the consistency of children's positive responses to stimulant medication, and at the robustness of the experience of increased capacity for moral agency with medication. We were unsurprised (having conducted prior research with young people) at the insights many young people have into their own behaviours and that of others.
I am hopeful that the perspectives of children reported in this article will inspire a fresh public conversation about the ethics of stimulant drug treatments, as well as further research with children. In order to believe that children's perspectives add something new and valuable to the social discourse, one must first view children as capable of reliably reporting their own experiences as part of a well-designed research study. It seems that Steven Rose does not view children this way. In his response, children are oppressed by physicians, teachers, parents, pharmaceutical companies and even researchers, rendered incapable of protest, and condemned to conformity.1
Responses like this are typical of a peculiar tendency to victimology found in some social and ethical analyses of ‘neuro-childhoods’ (where neuroscience and psychiatry intersect with children's experiences). The approach is to make a victim of the child, and an offender of the adult (or the world of adults), ostensibly out of concern for the child. The ethically troubling aspect of this victimology is that when children are constructed a priori as victims, it is easy to discount their individuality, their creativity and their role as agents within a social ecology. Crucially, it is easy to discount their capacity to report their experiences, and thereby to avoid addressing the challenges that these experiences may offer to longstanding beliefs held by adult observers. To help combat this bias against children's reports, we incorporated some of the VOICES interviews into an animated film ADHD and Me, that conveys key findings of the study2 and an accessible report aimed at parents and professionals who work with children.3
Children are more vulnerable in many ways than adults; and their social and developmental vulnerabilities are a necessary focus in debates about psychotropic interventions. However, victimology tends to wield children's innocence and vulnerability as a hegemonic ‘master identity’4 without an accompanying effort to understand young people's vulnerabilities in context, or to discover where young people show resilience and, indeed, power. This approach has likely contributed to the astonishing absence of young people's perspectives on their encounters with biomedical paradigms, technologies and interventions in the research literature.5
Two further issues picked up by the commentators deserve consideration. One is the definition and utility of the concept of authenticity in analyses of the impact of neuroscientific interventions generally, and in research on mental illness experience specifically. Steve Hyman notes, parenthetically—but it is a significant concern—that ‘authenticity’ is a slippery concept in the VOICES data and ‘deserves greater analysis’.6 I agree. Recent work by Tony Hope and Alex Erler7 ,8 argues that authenticity can be clinically useful, at least when working with patients diagnosed with anorexia nervosa. Yet others are uncertain whether authenticity has general properties that would allow it to be effective and reliable as a clinical principle. As I have discussed elsewhere9 authenticity is an important folk concept that has real significance in lay justifications for or against psychotropic intervention into behaviour. For this reason alone, the concept is relevant in many mental health settings. The power of the concept may in fact lie in its pragmatic uses and not in its general properties. But I remain uncertain in this area and hope to learn from further discussion and empirical investigation.
Finally, I was pleased that all commentators discussed the sticky problem of niche norms around child development and behaviour. To my mind, the intense focus on stimulant drugs over the decades has created a trees-forest problematic. As long as our focus and energy are taken up with stimulant drugs, we avoid a higher-level discussion about the values that ought to guide parents and professionals charged with the moral development of children. Some may say that values are exactly what people worry about when they worry about the use of stimulant drugs in children. But when the discussion starts with stimulant drugs, it is difficult to get to a clear account of values. Rather, the mode of reasoning is defensive—stimulant drugs are already assumed to diminish something of value in a child's growing experience of personal and social morality. There is little opportunity to reflect on the general ethical questions: what do we value, and what should we value, as part of these experiences?
Art Caplan's discussion of character is a good example of a usefully different starting point for this discussion, one with a (somewhat) cleaner historical horizon.10 In emphasising the importance of a belief in constant self-improvement and, alongside this, the difficulties of self-governance in face of ‘the temptations of vice’, Caplan articulates a much-needed empathic perspective on moral development in children.8 The growth of recent efforts in ‘character education’ in many parts of the world suggests that this is a rich area for research and analysis, particularly given the varying definitions of ‘good character’ across human social ecologies. Within a character framework, the use of stimulant drugs in young people could serve as one useful node of analysis, among others, on the way to a clearer, less defensive view on the question of values outlined above.
Competing interests None.
Provenance and peer review Commissioned; internally peer reviewed.