Health:

http://hea.sagepub.com/

The merit of sociological accounts of disorder: The Attention-Deficit Hyperactivity Disorder case Gregory Bowden Health (London) published online 27 November 2013 DOI: 10.1177/1363459313507585 The online version of this article can be found at: http://hea.sagepub.com/content/early/2013/11/11/1363459313507585

Published by: http://www.sagepublications.com

Additional services and information for Health: can be found at: Email Alerts: http://hea.sagepub.com/cgi/alerts Subscriptions: http://hea.sagepub.com/subscriptions Reprints: http://www.sagepub.com/journalsReprints.nav Permissions: http://www.sagepub.com/journalsPermissions.nav

>> OnlineFirst Version of Record - Nov 27, 2013 What is This?

Downloaded from hea.sagepub.com at St Petersburg State University on February 12, 2014

507585 research-article2013

HEA0010.1177/1363459313507585HealthBowden

Article

The merit of sociological accounts of disorder: The Attention-Deficit Hyperactivity Disorder case

Health 0(0) 1­–17 © The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1363459313507585 hea.sagepub.com

Gregory Bowden

Independent Researcher, Canada

Abstract This article argues in favor of a sociological perspective on health and illness, drawing on recognized positions from the philosophy of health and illness about how to demarcate disorder from non-disorder. The argument specifies that a normative context in which bodies or behaviors are disvalued is a necessary component for identifying what constitutes a disorder, as this normative context allows material differences to be understood as dysfunctional and pathological. Descriptions of material states in themselves are insufficient to distinguish what is legitimately a disorder; some evaluative stance toward those states is also required. This article applies the argument to disorders of inattention and hyperactivity, currently best known as Attention-Deficit Hyperactivity Disorder. These disorders have been controversial since their formalization in the 1970s, the same time that they began receiving sociological attention. Sociological analyses have consistently expressed ambivalence toward recognizing claims about the biological status of such disorders. This ambivalence has at times committed to a problematic relationship between sociological explanation and medical explanation, implicitly allocating sociological explanation to an auxiliary position. This article argues that this is not necessary, as sociological perspectives address disorders on a fundamental, rather than secondary, register. Disorders are only intelligible due to the normative and social context in which they are found, and so medical sociology can recognize the validity of biological claims about disorders, such as Attention-Deficit Hyperactivity Disorder, while still asserting the essential social nature of disorder. Keywords Attention-Deficit Hyperactivity Disorder, disorder, medicalization, theory Corresponding author: Gregory Bowden, Independent Researcher, 8357, 80th Avenue NW, Edmonton, AB T6C 0S9, Canada. Email: [email protected]

Downloaded from hea.sagepub.com at St Petersburg State University on February 12, 2014

2

Health 0(0)

Introduction In this article, I make a theoretical contribution to the sociology of health and illness, looking at the specific case of disorders of inattention and hyperactivity, currently known best as Attention-Deficit Hyperactivity Disorder (ADHD). In a context of competing claims about whether ADHD is, or should be seen as, a biological entity, normal behavior, a social construction, or some other kind, I argue in favor of a particular sociological conception of ADHD. I focus on the most promising attempts to articulate a sociological conception of ADHD, influenced by a biopsychosocial (BPS) model of illness. The BPS model recognizes the existence of biological facts about disorders, while arguing that this is insufficient for a full understanding of ADHD—a sociological complement is necessary. However, the current BPS perspective on ADHD runs the risk of prioritizing biological claims, treating the value-laden social context of disorder as a secondary or optional consideration. I argue, in contrast, that disorders are unintelligible without the normative context the social world provides. I make this argument with reference to the philosophy of health and illness, literature neglected by the sociology of ADHD. Clarity on this point will indicate whether the contributions which social science can make visà-vis disorder are fundamental or supplemental.

What is ADHD? ADHD is one of the most commonly diagnosed disorders in young children in North America, affecting 7 to 9 percent of children (Froehlich et al., 2007; Visser et al., 2007, 2013). Its major features are inattention, impulsivity, and hyperactivity, reflected in the diagnostic criteria from the American Psychiatric Association’s (APA, 2000) current Diagnostic and Statistical Manual of Mental Disorders (4th ed.; text rev.; DSM-IV-TR). These criteria, taken individually, appear benign or common, for example, “often has difficulty organizing tasks and activities” or “is often easily distracted by extraneous stimuli” (APA, 2000: 92). However, a diagnosis is warranted only when, among other significant requirements, multiple criteria are met, these characteristics cause significant impairment, and they persist for 6 months or more. Those diagnosed are more likely than their peers to encounter academic and social problems, and ADHD symptoms and impairments can persist into adulthood. The most common pharmacological treatment for ADHD is stimulant medication, which includes methylphenidate, best known by the trade names Ritalin and Concerta, and amphetamine-related medication, such as Adderall and Dexedrine. Behavioral treatments include reinforcement regimens meant to elicit positive behavior and reduce or extinguish undesired behavior, and instruction in organization and planning is also a frequent recommendation. One of the earliest and most persistent observations about disorders of inattention and hyperactivity is that prevalence and incidence rates are higher for boys than girls, roughly one-and-a-half to four times (Buitelaar, 2002; Visser et al., 2007). A gender discrepancy for any mental disorder is not in itself unusual (Rutter, 2001) but that does not explain the discrepancy. Theories include physiological predisposition, environmental factors, referral bias, and errors produced by measurement devices such as rating scales and the DSM criteria themselves, with the consensus being that there are multiple influences on gender and diagnostic rates (Heptinstall and Taylor, 2002).

Downloaded from hea.sagepub.com at St Petersburg State University on February 12, 2014

3

Bowden

While best known as a disorder of children and boys, ADHD has expanded to include adults. As Conrad and Potter (2000) detail, a recognition that ADHD symptoms and impairments can persist into adulthood gained traction through a number of influences, including revisions to the DSM criteria, increased public acceptance of pharmacological treatment, and a framing of medical problems as genetic, suggesting they are biological and therefore inherent to the individual, rather than contextual. This expansion was reflected by changes to the name of the major ADHD advocacy and support group, Children and Adults with Attention Deficit Disorder (CHADD), which added “adult” to their name in 1993, the same year in which the Attention Deficit Disorder Association (ADDA) “sponsored the first national conference on ADD in adults” (Nadeau, 1995: xv). While many point to 1902 lectures given by pediatrician George F. Still, published in The Lancet, as early descriptions of disorders of inattention and hyperactivity, ADHD has its modern origins in the 1960s and 1970s, when its characteristic behaviors obtained recognition and responses by major institutions in children’s lives: family, schooling, and medicine. While the 1968 DSM-II included the diagnosis of “Hyperkinetic reaction of childhood,” this was employed far less frequently in practice than Minimal Brain Dysfunction and other terms affiliated with learning disorders. DSM-III introduced “Attention-Deficit Disorder” proper in 1980, and the revised DSM-III-R (1987) named it “Attention-Deficit/Hyperactivity Disorder.” The DSM-IV in 1994 subsumed variants of ADHD under one category with subtypes emphasizing inattention, hyperactivity, or a combination of the two. While the World Health Organization’s International Statistical Classification of Diseases and Related Health Problems (ICD-10) has a category for “hyperkinetic disorders,” the DSM remains the classificatory standard in North America; since the DSM-III, there have been efforts by the respective governing institutions to make the manuals concordant. Anastopoulos and Shelton (2001) chart these DSM revisions in detail, providing the context for APA’s changes as well as a comparative analysis of the criteria from DSM-I to DSM-IV. Disorders of inattention and hyperactivity have been perpetually controversial along two major poles: the appropriateness of stimulant medication and the very existence of such disorders. In the 1970s, the Washington Post reported on Omaha schoolchildren’s use of medicine for behavior modification (Maynard, 1970). This report and the subsequent public response prompted a US congressional investigation on schoolchildren’s stimulant use. In the wake of this attention, a polemic tone of skepticism which persists to the present began, exemplified by works such as Schrag and Divoky’s (1975) The Myth of the Hyperactive Child and Other Means of Child Control, Peter Breggin’s (2001) Talking Back to Ritalin and Baughman and Hovey’s (2006) The ADHD Fraud. This brief historical overview only alludes to the complex history of both scientific inquiry and social change which enabled the current phenomenon of ADHD, including transformations in the pharmaceutical industry, popular sentiments about childhood, education, and psychiatry, and changes in government funding and aid for health and disability. Alongside the extant sociological literature, to which I will now turn, a number of researchers have examined the social history of ADHD in greater critical detail (e.g. Mayes et al., 2009; Miller and Leger, 2003).

Downloaded from hea.sagepub.com at St Petersburg State University on February 12, 2014

4

Health 0(0)

ADHD and social science American sociologist Peter Conrad’s extensive work on medicalization began with Identifying Hyperactive Children: The Medicalization of Deviant Behavior in 1976. Asking how “deviant behavior become[s] defined as a medical problem” (p. xv), Conrad (1976) looked at the institutional changes around the evaluation and management of a form of deviant childhood behavior, that of hyperactivity. The last 20 years have witnessed additional sociological work on ADHD, by Conrad et al. (Conrad, 2010; Conrad and Potter, 2000; Conrad and Schneider, 1992) and by others. This research has studied how people interact with educational and medical professionals in the process of diagnosis (Bailey, 2009; Malacrida, 2003; Rafalovich, 2004), the values embedded in ADHD research (Hawthorne, 2007, 2010a, 2010b), the debates over ADHD’s legitimacy and their consequences for clinical settings (Parens and Johnston, 2008, 2009, 2011; Singh, 2005, 2006, 2007, 2008), and historical accounts of medication trends, particularly in the United States (Mayes et al., 2009; Mayes and Rafalovich, 2007). This research provides substantial insight into the social life of ADHD. In the context of controversy over the status of ADHD, what is of interest here is how this literature relates to the ontological question of whether ADHD is real, of whether it exists or not. There are largely two ways in which this literature responds to questions about what sort of thing ADHD might be. The first is an oppositional stance, which defines sociological and biological accounts of ADHD as mutually exclusive: biological explanation has to be rejected in order for there to be space for sociological explanation, and vice versa. The second type of response is more conciliatory, and more promising. It recognizes how sociological and biological accounts have some relative autonomy, but are also not mutually exclusive. This makes room for a BPS understanding of health and illness, with a recognition that the social disvaluation of difference is essential to disorder. However, in practice, this literature on occasion reiterates a problematic opposition between a biological sphere as the site of fundamental reality, and a social or discursive sphere which is auxiliary. This runs the risk of implying that in the final instance, disorders are matters of biology.

The oppositional stance Discussions of what ADHD might be invariably run into claims about biology. Biological claims are a reference point by which other perspectives on ADHD frame themselves as oppositional, alternative, or complementary (Cooper, 1997). These latter perspectives, however divergent, thus remain alike in relation to what Cooper (1997) calls the “allopathic-medical orientation which asserts that ADHD is primarily a bio-medical problem in which psycho-social factors, in so far as they are implicated at all, are of secondary importance” (p. 33). Singh (2008) more recently reaffirms the centrality of an allopathicmedical orientation. The dominant understandings of ADHD find cause primarily in biology, the environment, or some interaction thereof, which lead to biological dysfunction. However, as she writes, There is a fourth position, which is sceptical that ADHD is a real disorder. This position is sometimes identified with scientologists, but it is also represented by a separate, and more thoughtful, sociological critique. (Singh, 2008: 958)

Downloaded from hea.sagepub.com at St Petersburg State University on February 12, 2014

5

Bowden

While some variants of this “sociological critique” are cautious and circumspect, other variants explicitly oppose sociological explanation and biological explanation: Sociological perspectives do not generally accept that there is a biological element when seeking to explain the aetiology of the disorder … (Wheeler, 2010: 262) The sociological discourse contends that ADHD has been reified into a biomedical concepts … [F]rom this perspective ADHD does not exist as a true objective disorder. Instead, the sociological discourse argues that the concept of ADHD is a social and cultural construct whereby “disorders in society [have created] disorders in children.” (Visser and Jehan, 2009: 128–129)

Visser and Jehan argue that ADHD’s legitimacy stems not from science’s access to the truth but from the authority of technical forms of measurement and the expertise of scientists and physicians; the public accepts their authority and consequently their claims. Other forms of this oppositional stance reject biological and medical claims on the grounds that the data are inconclusive (Reid et al., 1993; Reid and Maag, 1997; Tait, 2005; Thurber et al., 2009; Visser and Jehan, 2009). However, this oppositional stance does not necessarily carve out a space for sociological analysis. If biomedical science exploits technocratic authority, or if it allows extrascientific influence to skew its approach, then such a critique is nonetheless reaffirming the virtues of proper, uncorrupted, scientific inquiry. If biomedical science could provide the relevant answers if only it were done disinterestedly, then the task is to practice said science, but disinterestedly. If science can never be done independently of its social context, there may be a place for sociological analysis—but this would not indict the claims of science so much as describe how they are generated. Furthermore, this oppositional position presumes that sociology is only capable of participating when there is diagnostic ambiguity, and then, given sufficient physiological evidence and absence of bias, a disorder becomes the province solely of medicine, with sociology moving on to another object. It supposes that given sufficient material evidence regarding a disorder, there is no merit in sociological explanations.

The conciliatory stance Eschewing this explicit rejection of a medical model, the second type of response in sociological research on ADHD is to argue that questions such as “does ADHD exist?” are poorly framed. Questions about whether the disorder is real or not are presented as a false dilemma: I have attempted to treat ADHD as simultaneously a real and a constructed diagnosis. While the legitimacy of the diagnosis is obviously at stake in an analysis of its social functions and historical roots, I am not here attempting to say that ADHD as a neurological disorder does not exist. Indeed, it is impossible to say definitively whether ADHD does or does not exist … The important question, it seems to me, is not about the reality of ADHD; rather it has to do with the desire for ADHD diagnosis. (Singh, 2002: 599)

Downloaded from hea.sagepub.com at St Petersburg State University on February 12, 2014

6

Health 0(0)

Similarly, Claudia Malacrida, in Cold Comfort: Mothers, Professionals, and Attention Deficit Disorder (2003), writes she “was not interested in providing evidence one way or another to add to debates over the legitimacy of AD(H)D” (p. 14), “nor whether AD(H)D itself is a ‘true’ disorder” (p. 44). She describes ADHD as a “disciplinary category” and her overriding interests were the rules governing who could speak about ADHD and had authority over diagnosis and treatment. Adam Rafalovich, in Framing ADHD Children (2004), asserted that ADHD is, by definition, a medical problem, but that in light of his methodological and theoretical perspective, ADHD “should not be regarded as a medical falsehood or conversely, as a medical reality” (p. 8). He continues, “instead of proposing an ontology of ADHD, it would be more pertinent to examine the discourse that has constituted ADHD as an object in the same spirit as Michel Foucault’s genealogical studies” (p. 8). Although not identical, these perspectives share a recognition that decisive claims about ADHD’s ontological status are problematic and perhaps unnecessary for sociological inquiry. They resist the question of whether ADHD is real because it entails problematic assumptions. We see this in Peter Conrad and Kristin Barker’s (2010) defense of a social constructionist perspective on illness. In part, they argue, Following Freidson (1970), we do not think it is sociology’s job to adjudicate between what is “really” a disease or illness and what is “socially constructed.” Indeed, like Hacking we consider this to be a false binary. From a social constructionist perspective, the point is to investigate how something comes to be defined as a “disease” or “illness” in the first place. Sociologists can further study the extant and changing cultural meanings that may inhere in a disease or illness while remaining agnostic about the “underlying” biological condition. In any given case, it is the viability of the idea of disease or illness itself (rather than its validity, per se) that is of greatest interest to sociologists. (Conrad and Barker, 2010: S77, fn1)

I agree that the opposition between “real disease” and “socially constructed disease” is indeed a false opposition. However, in the preceding statements, the ontological question is not circumvented, but rather is further complicated. First, if sociologists are operating at the level of meanings and discourse, and biologists are concerned with some physiological entity or pattern, then there are two fields of inquiry. On one hand, there is a discursive field of statements, ideas, and interpretive frameworks, which circulate around the term ADHD, with relevant forms of inquiry. On the other hand, there is a hypothesized biological referent for the term ADHD, with relevant forms of inquiry. One can study the meanings and narratives ascribed to biological states without deliberating the validity of research into those biological states. The ontological question presumably falls away, on the grounds that one can study discourse, meanings, and so on, without operating on the biological register. As a comparative case, we can consider the medicalization of tallness in girls (Rayner et al., 2010). One need not circumvent the question of whether tallness exists or not in order to study the cultural meanings appended to it. However, this independence means that analyses of discourse can say very little about biological conditions—if the biological substrate has final bearing on whether disorders exist or are legitimate, then Conrad and Barker are correct that sociology cannot adjudicate between what is really a disease or not. The implication is

Downloaded from hea.sagepub.com at St Petersburg State University on February 12, 2014

7

Bowden

that if one wishes to know whether ADHD, or tallness, or some other case is actually pathological, then this question will be left to some authority other than sociology. Second, if sociologists are instead asserting that the very objects of biological and medical science are themselves constructed, then the ontological commitments are different. For social constructionism, entities exist precisely through practices of construction. If ADHD is socially constructed, it is brought into being through the circulation of narrative and intersubjective meaning, reinforced institutionally. Such a constructionist position would see scientific practices as themselves part of discourse, so the question of whether ADHD exists is again solved: if discourse brings things into being, then ADHD surely exists. One can study the social logic by which truth claims about ADHD are made and justified, and how the sciences construct their objects, but this does not circumvent ontological questions, it is a direct ontological commitment. For the social constructionist, ADHD and tallness are equally constructed via science; the identification that something is constructed may be analytically productive, but it does not disprove the existence of constructed objects. The extant social science literature on ADHD is ambiguous about where it stands in relation to these positions. Conrad and Barker’s defense of sociological “agnosticism” toward “‘underlying’ biological conditions,” and Singh’s assertion that ADHD is not simply real but simultaneously “real and constructed” do not deflate the distinction between what is socially constructed or discursive and what is “real” or “biological,” they reaffirm it. We remain with a series of opposed terms: on one hand, there are the objects of social construction, discursive entities, disciplinary categories, reification, and ideas; on the other hand, there are the objects of medicine and biology, of valid entities, and neurological truth. This distinction is potentially a commitment to second-order relevance: it presumes a world of actual material disorders, and then there is the sociologist’s discursive or cultural sphere. The sociological story stops at the gate, so to speak, unable to enter discussions of “real” disorder and must be content with a social world only appended to that where fundamental truths reside. How then would sociology contribute to debates over the inclusion of ADHD in the DSM, or to a public which is both wary of, and has an affinity for, the diagnosis and pharmacological treatment? Is public health affected by the discursive life of a disorder? If research shows that definitions of disorder are historically specific and culturally variable, does this have relevance to policy discussions, and how so? Sociology’s conception of disorder will determine its relevance to contemporary problems of ADHD, and it is therefore useful to defend the position that disorders have an irreducible social component, without importing some of the problems above, as I will now discuss.

The promise of a BPS model One conciliatory position on the ontology of ADHD is a “BPS” perspective on health and illness. With early articulations by psychiatrist George L. Engel (1977), a BPS perspective recognizes the interaction of somatic, psychological, and environmental influences on health and illness. Rather than treating illness as an individual dysfunction independent of circumstance and context, this perspective would alert one to the complexity of

Downloaded from hea.sagepub.com at St Petersburg State University on February 12, 2014

8

Health 0(0)

illness, in terms of etiology and treatment alike. Colley (2010) summarizes it well in the ADHD case: ADHD is currently and universally understood by professionals and policy makers to be biological in origin, but psychological and social in expression, in which outcomes are determined by a complex set of relationships between the individual and the environment that they experience and indeed create. (p. 87)

Thus, while the claims about physiology may be defensible, the fullest understanding of disorder requires an understanding of how physiology is mediated by environment and cultural context. Cooper (1997, 2001, 2008) also advocates for this approach, partly on the grounds that there is simply evidence for it: … in the face of a growing body of neuro-psychological evidence base for AD/HD it would seem ill-advised to dismiss the validity of this approach to understanding AD/HD. (Cooper, 2001: 390)

Another well-developed account of how to conceive of ADHD in this vein is in the recent work of Ilina Singh (2006, 2008, 2011). Singh (2011) argues for a perspective which admits the “phenomenological ground” and “biological dimensions” (p. 889) of disorder but which also recognizes the import of social science: I take it as a given that behavioral interpretation is to some extent culturally relative and that diagnostic practices index social values. But this does not necessarily invalidate ADHD diagnosis; it does mean that diagnostic practices should pay close attention to the environment and acknowledge, in a systematic and reflexive way, the substantial traces of context and culture that behavioral interpretation, and behavior itself, carry. To assist this, sociological models of diagnosis should move beyond reductive arguments that locate disorder either in the child or in the environment, towards more complex models that allow for the interplay between the two, and view diagnosis as part of that interplay, not separate from it. (p. 895)

Peter Conrad and Kristin Barker (2010) advance a similar argument: First, some illnesses are particularly embedded with cultural meaning—which is not directly derived from the nature of the condition—that shapes how society responds to those afflicted and influences the experience of that illness. Second, all illnesses are socially constructed at the experiential level based on how individuals come to understand their illness, forge their identity, and live with and in spite of their illness. Third, as feminist, science studies, and medicalization analysts have demonstrated, medical knowledge about disease is not necessarily objectively given in nature; rather, it is constructed and developed by claims-makers and interested parties who frequently have a strong evaluative agenda. These findings do not invalidate scientific and medical perspectives, but rather demonstrate that diseases and illnesses are as much social products as medical-scientific ones. (p. S76)

This would appear to be a suitable approach for social science, with a consensus on two points: First, whether disorder or not, ADHD characteristics exist. There is by definition a population of children who manifest DSM criteria for ADHD, distinguished from

Downloaded from hea.sagepub.com at St Petersburg State University on February 12, 2014

9

Bowden

a population of children who do not and research is capable of understanding the boundaries of this distinction and the characteristics of those so categorized (Singh, 2006). Second, physiological claims are not in themselves exhaustive of all that might be said of disorder—disorders and treatment for them are the product of history, and social life affects the definition, management, and experience of disorder. Science and medicine remain a social practice. Measures of ADHD are shaped by the context of inquiry and the operating commitments scientists bring to bear on their research. Social science can study this without extravagantly rejecting the claims such science generates. However, there is some ambiguity in a BPS approach warranting clarification: Are disorders fundamentally biological entities, which subsequently take on a social life, or is the social context of disorder fundamentally constitutive of disorders? As Conrad and Barker write, “diseases and illness are as much social products as medical-scientific ones,” and I argue that this is because social context makes disorders intelligible. Social science is not in an ancillary position on what disorders “really” are, because the normative context provided by the social world is what allows one to distinguish mere biological difference from what warrants intervention. The preceding sociological research on ADHD remains defensible, but with the benefit that it can jettison problematic, contradictory, or oppositional stances: the recognition of biological claims about disorder does not entail that biology is the final arbiter of what constitutes disorder. For some explication, we can turn to some general arguments and principles in the philosophy of disorder.

The philosophy of defining disorder Since the 1970s, with concerns over the status of psychiatry within medicine, and antipsychiatry critiques over how psychiatry sought to justify what it treated, significant attention has been given to how to demarcate disorder from non-disorder,1 and this is what prompted Engel’s call for a more comprehensive model of illness. The two major contemporary philosophical positions in demarcating disorder are “naturalism” and “normativism.”2 It is difficult to adequately summarize these competing definitions as they constitute an entire field of philosophical analysis (see Bolton, 2001, 2008; Ereshefsky, 2009; Murphy, 2009; Ross, 2005, 2007). Nonetheless, naturalism treats disorder as an objective property, something independent of value judgments and of culture and can be discovered through the scientific method (e.g. Boorse, 1977). Naturalism aims to identify disorder through the analysis of anatomy and physiology on an individual level, by examination of a patient’s organs, for example, and on a group level, through evolutionary traits and statistical deviation. Normativism, in contrast, understands disorder as based primarily in values. Disorders are fundamentally phenomena which are disvalued (Sedgwick, 1982) and which come to be objects of medicine for additional reasons which depend on the particular normativist stripe in question. Claimed problems with naturalism are that disorders are not natural kinds; while there can be tests for particular physiological states or entities, there is no test which says that an entity or state is an object for medicine. For example, how do we know from the brain alone that one neurological state is a disorder and another not? Something about the state must conflict with our desires or expectations about how our brains are to work. Claimed problems

Downloaded from hea.sagepub.com at St Petersburg State University on February 12, 2014

10

Health 0(0)

with normativism are that deviance or undesirability alone is insufficient to warrant the status of disorder. For example, homelessness is not disorder and neither is being rude, so what else is necessary beyond disapproval? In light of these problems, a third position has emerged, a “hybrid” position, which attempts to jettison perceived failures of naturalism and normativism while combining their virtues (Wakefield, 1992, 2007). Like normativism and naturalism, the aspirations of a hybrid position have not been fully realized and the position remains contested.3 For some clarity, we can first follow Ereshefsky (2009) who simply separates the issues: talk about disease includes both “state descriptions” and “normative claims.” That is to say, there are properties of bodies, and there are judgments about what those bodies ought to be like. “Using the distinction between state descriptions and normative claims makes clear where the disputants agree and where they disagree rather than lumping two central aspects of the debate under the heading ‘disease’” (p. 225). Furthermore, neither state descriptions nor normative claims are themselves sufficient to identify disorder. What medicalization and the preceding work in philosophy of diagnosis has shown is that to demarcate disorder, one invariably makes recourse to both types of claims: some physiological states exist, and those states are undesirable. The simplest expression is that whether a broken bone or an organ which does not function as one desires, what is common is the disvaluation of this state of affairs. This disvaluation, this normative component, is often expressed in the philosophical literature as a “harm” component, which is intuitively clear: cancer is harmful to how we wish to be, addictive behavior is also harmful, as is the inability to interact with others according to social norms. It is not that medical science occupies the position of state descriptor, which identifies disorders, whereas social science investigates the normative claims which circulate around these disorders. Medical science’s interest in pathological states already relies on tacit norms about what is pathological. Within this framework, we can revisit ADHD’s status as disorder. For children diagnosed ADHD, there are legitimate state descriptions: some behaviors co-occur and appear to be related to some physiological state. However, an extensive account of state descriptions of hyperactivity and attention would be just that—data about motion and perception. Until this is connected to a normative context in which these states and their consequences are seen or experienced as undesirable, there is no way to see these descriptions as evidence of disorder, rather than as physiological difference. There is no meaningful disorder of movement or attention span absent impairment, failure to finish school work, and so forth. The notion that disorders are not simply natural kinds which can be understood through technical measurement, but that they reflect what sorts of bodies and capacities are valued, has been expressed in various places, including Engel, but also Canguilhem (1989) and Sedgwick (1982), and recently and quite importantly for the current case, in Susan Hawthorne’s (2007, 2010a, 2010b) analyses of the constitutive role values play in ADHD: Biological views embed society’s normative judgments: when scientists interpret the physiological bases for the associated behaviors and their consequences as “dysfunctions,” the term refers not simply to the physiological bases (which would be mere “differences”) but also to the multiple correlated concerns. (Hawthorne, 2010a: 513)

Downloaded from hea.sagepub.com at St Petersburg State University on February 12, 2014

11

Bowden

Ascriptions of disorder necessarily involve a value judgment about something undesired and it is only this disvaluation, by individuals and institutions, which makes state descriptions relevant to discussions of ADHD as a disorder. To develop this point further, it is quite plausible that there exists a set of children whose behavior distinguishes them from peers and that their behavior has some correlated neural activity. Understanding the dimensions of that phenomenon is difficult and it is not trivial to be able to conclude that “children who demonstrate behavior along spectrum X also demonstrate Y neurological structure and are affected in manner Z by Ritalin.” However, if we grant that the behavior exists, it would be quite surprising to discover that there is no activity in the central nervous system which distinguishes that behavior from different behavior. One does not need to be a radical materialist to accede that external behavior has some correlated activity with the central nervous system. It would be more difficult to assert the reverse: that observable behavior is in an arbitrary relationship to physiological states. Indeed, evidence of ADHD’s material basis is testament to techniques and skills in measuring physiological differences, not in demonstrating a general principle about how observable behaviors have a relationship to our physiology. What this means, however, is that if all behaviors have some physiological correlate, then identifying that correlate, however therapeutic, does not do the heavy lifting in terms of demarcating disorder from non-disorder, any more than somatic differences between men and women, left-handers and right-handers, English speakers and French speakers would indicate disorder. One can recognize that we can measure differences among children without ceding that these are sufficient grounds for something being called disorder: While we accept that ADHD can name a cluster of impairing symptoms, we do not accept that research such as that we just mentioned can by itself show its “bona fide” core. We can imagine, for example, a carefully described cluster of behavioral traits constituting what a panel of experts called Contented Child Syndrome, and that diagnosticians trained to recognize that cluster would find similar prevalence rates across different countries. But that would not alone show that Contented Child Syndrome is a “bona fide” psychiatric disorder, or that “social construction” plays no role in determining which clusters of moods and behaviors are mental disorders. (Parens and Johnston, 2011: S7)

There are two potential objections to address at this point: first, that disorder can be determined through the objectively measured account of a state which consistently leads to harmful outcomes. For ADHD, one could cite evidence which shows that children diagnosed are more likely to experience harms including academic difficulties and peer rejection. In response, it is important to note that harm operationalized as “morbidity” or “mortality,” while potentially useful, does not circumvent normative commitments. Evidence of harm does not circumvent the application of an evaluative principle, it reaffirms and formalizes it. The other related objection is that state descriptions reveal an objective dysfunction in the body, and this is one of the tenets of Wakefield’s (1992) hybrid model. This, however, meets the same rebuttal: “dysfunction” is by definition an evaluation rather than an essential property:

Downloaded from hea.sagepub.com at St Petersburg State University on February 12, 2014

12

Health 0(0)

The “scientific” language of biological dysfunction tends to suggest that recognition of the dysfunction and the affected individuals is precise, and that it relies on non-value-laden norms of function, or that this is at least the goal … [However] … the nature and extent of the biological dysfunction and the identification of affected individuals are imprecise at present, leaving room for value-laden judgments that might not otherwise be as influential. Second, the concepts of “function” and “dysfunction” are themselves (at least in part) value-laden, as suggested by Fulford and others, inviting disagreement over the application of the terms to particular biological traits. (Hawthorne, 2007: 136)

At this point, the philosophical discussion moves into tangled and contested arguments in the philosophy of biology, particularly arguments about the status of “function” itself. In any case, disorders have in practice not been identified according to objective evaluations of dysfunction. Medicalization studies confirm the primacy of harm, or disvaluation, from which investigation into state descriptions is possible. Conrad has shown that in the case of disorders of inattention and hyperactivity, it was not an objective determination of aberrant physiology which led to medicalization. It was only the problem behavior which could make a hypothesized physiological difference understandable as dysfunctional. The evaluation of these disorders as undesirable happened prior to the search for a physiological cause, in classrooms, at home, and in the offices of medical professionals. Physiological evidence is not what constituted hyperactivity as disorder in practice. This means neither that disorders are illegitimate until a physiological measurement is found, nor that one can legitimately ascribe the status of disorder for reasons other than physiological grounds—rather, the conclusion is that medicine is imbricated with social values about what sorts of bodies and lives are desirable; relevant biological knowledge is worth pursuing precisely because it enables the modification of our selves and lives in accordance with values. Influential ADHD researcher Paul Wender (1979) articulated this, perhaps unwittingly: Ultimately, we wish to associate certain patterns of behaviour with specifiable psychological experiences, neurologic structure, or neurophysiologic or biochemical functioning. Our problem is what to do till the science comes. (p. 5)

One of the major justifications for clinical research on ADHD is that it helps people obtain a state of affairs in which outcomes fit values and norms, doing so in response to reported grievances which appear amenable to somatic investigation.

In defense of sociological analysis Given these general philosophical insights into disorder, we can return to how sociology can have a conception of disorder which is sociological, defensible, and authoritative. As I have shown, one conciliatory approach to disorders would grant that there are biological disorders, with the contributions of social science an important complement to understanding physiological impairments and dysfunctions. The trap of this model is the reliance on an unnecessary conceptual opposition: there is “disorder proper” and then there is a subsequent “life of disorders” in the world. This relegates social science to second-order explanation, presuming that biological evidence alone establishes what is

Downloaded from hea.sagepub.com at St Petersburg State University on February 12, 2014

13

Bowden

and ought to be a disorder. It reduces a BPS perspective on disorder to the consideration of biological, psychological, and social impacts on what appear to be objective and ahistorical biological objects. Defenses of a BPS model for ADHD specifically are generally sound, but at times risk reinscribing sociology’s auxiliary position in such a way. Consider Cooper’s (2008) description: Children who are biologically predisposed to develop ADHD are disadvantaged by culturally based assumptions about what appropriate behaviour in schools and classrooms looks like. (p. 466)

There is nothing immediately objectionable here, but it elides the fact that “the biological predisposition to develop ADHD” is founded on those normative assumptions about appropriate behavior. Conrad and Barker write, A social constructionist approach to illness is rooted in the widely recognized conceptual distinction between disease (the biological condition) and illness (the social meaning of the condition). (Conrad and Barker, 2010: S67, citing Eisenberg, 1977)

This conceptual distinction is unnecessary, as it supposes that the biological condition stands on its own. However, “the biological condition” cannot be grasped in itself; it can only be ascertained after there is a “social meaning of the condition,” that is to say, a sense that some behavior or entity ought to be mitigated. That social meaning is precisely what underwrites attempts to identify, measure, and treat disease: Perhaps more than any other diagnosis on the medical market today, Attention Deficit/ Hyperactivity Disorder (ADHD) problematizes the assumption of an objective measure of “normal” functioning, and points to the distinctly social task of judging normative behaviors, assigning diagnostic labels and deciding on, and responding to, medical treatments. (Singh, 2006: 439)

While we can say that ADHD is not fictional, it is not a “natural kind” and it is misleading to talk about disorders as ahistorical and acultural entities. They are always a function of values about what forms of life are desirable, about the ends people have for themselves and others. It is not that objective physical states are identifiable as disorder, only then to provoke moral quandaries, or then translated into “lived experience.” Rather, any demarcation of behavior as disorder is meaningful only because of a normative context. Normative considerations do not ride the coattails of state descriptions of disorder, as though the latter could continue whether values about disorders were present or not. On this point, a robust sociology of disorder does not compete with the descriptive claims of medical science; it subsumes them. In light of this, sociologists need not be reluctant in talking about disorders proper. A world of obligations, desires, and values always forms the ground on which technical analyses of disorders are possible, and this ground is what makes state descriptions meaningful, not the reverse. Sociological studies of disorders, including ADHD, need not present themselves as ancillary or operating on a peripheral register—they are addressing the fundamental and constitutive role the social context plays in identifying, measuring, and treating disorders.

Downloaded from hea.sagepub.com at St Petersburg State University on February 12, 2014

14

Health 0(0)

Funding This work was funded in part by a Doctoral Fellowship from Canada’s Social Sciences and Humanities Research Council.

Notes 1. Whether defining “health” or “illness,” “disease,” or “disorder,” the central task is demarcating what is justifiably an object of medicine and what is not. Thus, while the issues are consistent, the terms are not. I use the covering term “disorder” throughout. 2. Again there is variation in terminology; I follow Ereshefsky (2009) for the naturalist/normativist distinction. Scadding (1996) employs a nominalist/essentialist distinction. Murphy (2009) uses the objectivist/constructivist distinction in a similar manner to the naturalist/normativist distinction (although he makes finer and useful distinctions between the two poles). While these pairs of terms are not entirely homologous, their differences are not significant for the present discussion. 3. See the discussion between Wakefield (2003) and Arthur Houts and William Follette (Houts, 2001a, 2001b, Houts and Follett, 1998; and their preceding articles) and the discussion between Wakefield (2000) and Dominic Murphy and Robert Woolfolk (2000a, 2000b).

References American Psychiatric Association (APA) (1968) Diagnostic and Statistical Manual of Mental Disorders (DSM-II). 2nd ed. Washington DC: APA. American Psychiatric Association (APA) (1980) Diagnostic and Statistical Manual of Mental Disorders (DSM-III). 3rd ed. Washington, DC: APA. American Psychiatric Association (APA) (1994) Diagnostic and Statistical Manual of Mental Disorders (DSM-IV). 4th ed. Washington, DC: APA. American Psychiatric Association (APA) (1987) Diagnostic and Statistical Manual of Mental Disorders (DSM-III-R). 3rd ed. Revised. Washington, DC: APA. American Psychiatric Association (APA) (2000) Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR). 4th ed. Text rev. Washington, DC: APA. Anastopoulos AD and Shelton TL (2001) Assessing Attention-Deficit/Hyperactivity Disorder. New York: Kluwer, Academic/Plenum Publishers. Bailey S (2009) Producing ADHD: An ethnographic study of behavioural discourses of early childhood. PhD Thesis, University of Nottingham, Nottingham. Baughman FA and Hovey C (2006) The ADHD Fraud: How Psychiatry Makes Patients of Normal Children. Victoria, BC, Canada: Trafford Publishing. Bolton D (2001) Problems in the definition of mental disorder. Philosophical Quarterly 51(203): 182–199. Bolton D (2008) What Is Mental Disorder? An Essay in Philosophy, Science, and Values (International perspectives in philosophy and psychiatry). Oxford: Oxford University Press. Boorse C (1977) Health as a theoretical concept. Philosophy of Science 44(4): 542–573. Breggin PR (2001) Talking Back to Ritalin: What Doctors Aren’t Telling You about Stimulants and ADHD. Rev. ed. Cambridge, MA: Perseus Publications. Buitelaar JK (2002) Epidemiological aspects: What have we learned over the last decade? In: Sandberg S (ed.) Hyperactivity and Attention Disorders of Childhood. 2nd ed. London: Cambridge University Press, pp. 30–63. Canguilhem G (1989) The Normal and the Pathological. New York: Zone Books.

Downloaded from hea.sagepub.com at St Petersburg State University on February 12, 2014

15

Bowden

Colley B (2010) ADHD, science and the common man. Emotional and Behavioural Difficulties 15(2): 83–94. Conrad P (1976) Identifying Hyperactive Children: The Medicalization of Deviant Behavior. Lexington, MA: D.C. Heath and Company. Conrad P (2010) The changing social reality of ADHD. Contemporary Sociology 39(5): 525–527. Conrad P and Barker KK (2010) The social construction of illness: Key insights and policy implications. Journal of Health and Social Behavior 51(Suppl. 1): S67–S79. Conrad P and Potter D (2000) From hyperactive children to ADHD adults: Observations on the expansion of medical categories. Social Problems 47(4): 559–582. Conrad P and Schneider JW (1992) Deviance and Medicalization: From Badness to Sickness. Philadelphia, PA: Temple University Press. Cooper P (1997) Biology, behavior and education: ADHD and the bio-psycho-social perspective. Educational and Child Psychology 14(1): 31–38. Cooper P (2001) Understanding AD/HD: A brief critical review of literature. Children & Society 15(5): 387–395. Cooper P (2008) Like alligators bobbing for poodles? A critical discussion of education, ADHD and the biopsychosocial perspective. Journal of Philosophy of Education 42(3–4): 457–474. Engel GL (1977) The need for a new medical model: A challenge for biomedicine. Science 196(4286): 129–136. Ereshefsky M (2009) Defining “health” and “disease.” Studies in History and Philosophy of Biological and Biomedical Sciences 40(3): 221–227. Freidson E (1970) Profession of Medicine: A Study of the Sociology of Applied Knowledge. New York: Harper & Row. Froehlich TE, Lanphear BP, Epstein JN, et al. (2007) Prevalence, recognition, and treatment of attention-deficit/hyperactivity disorder in a national sample of us children. Archives of Pediatrics & Adolescent Medicine 161(9): 857–864. Hawthorne S (2007) ADHD drugs: Values that drive the debates and decisions. Medicine, Health Care and Philosophy 10(2): 129–140. Hawthorne S (2010a) Institutionalized intolerance of ADHD: Sources and consequences. Hypatia 25(3): 504–526. Hawthorne S (2010b) Embedding values: How science and society jointly valence a concept—the case of ADHD. Studies in History and Philosophy of Biological and Biomedical Sciences 41(1): 21–31. Heptinstall E and Taylor E (2002) Sex differences and their significance. In: Sandberg S (ed.) Hyperactivity and Attention Disorders of Childhood. London: Cambridge University Press, pp. 99–125. Houts AC and Follette WC (1998) Mentalism, mechanisms, and medical analogues: Reply to Wakefield. Journal of Consulting and Clinical Psychology 66(5): 853–855. Houts AC (2001a) The diagnostic and statistical manual’s new white coat and circularity of plausible dysfunctions: Response to Wakefield, part 1. Behaviour Research and Therapy 39(3): 315–345. Houts AC (2001b) Harmful dysfunction and the search for value neutrality in the definition of mental disorder: Response to Wakefield, part 2. Behaviour Research and Therapy 39(9): 1099–1132. Malacrida C (2003) Cold Comfort: Mothers, Professionals, and Attention Deficit Disorder. Toronto, ON, Canada: University of Toronto Press. Mayes R and Rafalovich A (2007) Suffer the restless children: The evolution of ADHD and paediatric stimulant use, 1900–80. History of Psychiatry 18(4): 435–457.

Downloaded from hea.sagepub.com at St Petersburg State University on February 12, 2014

16

Health 0(0)

Mayes R, Bagwell C and Erkulwater J (2009) Medicating Children: ADHD and Pediatric Mental Health. Cambridge, MA; London: Harvard University Press. Maynard R (1970) Omaha pupils given “behavior” drugs. The Washington Post, 29 June, A1. Miller T and Leger MC (2003) A very childish moral panic: Ritalin. Journal of Medical Humanities 24(1–2): 9–33. Murphy D (2009) Concepts of disease and health. In: Zalta EN (ed.) The Stanford Encyclopedia of Philosophy. Available at: http://plato.stanford.edu/archives/sum2009/entries/health-disease/ (accessed 24 September 2011). Murphy D and Woolfolk RL (2000a) Conceptual analysis versus scientific understanding: An assessment of Wakefield’s folk psychiatry. Philosophy, Psychiatry, and Psychology 7(4): 271–293. Murphy D and Woolfolk RL (2000b) The harmful dysfunction analysis of mental disorder. Philosophy, Psychiatry, and Psychology 7(4): 241–252. Nadeau KG (1995) Preface. In: Nadeau KG (ed) A Comprehensive Guide to Attention Deficit Disorder in Adults: Research, Diagnosis, and Treatment. New York: Brunner/Mazel, pp. xiii–xvi. Parens E and Johnston J (2008) Understanding the agreements and controversies surrounding childhood psychopharmacology. Child and Adolescent Psychiatry and Mental Health 2(1): 5. Parens E and Johnston J (2009) Facts, values, and Attention-Deficit Hyperactivity disorder (ADHD): An update on the controversies. Child and Adolescent Psychiatry and Mental Health 3(1): 1–51. Parens E and Johnston J (2011) Troubled children: Diagnosing, treating, and attending to context [Special Report]. Hastings Center Report 41(2): S1–S32. Rafalovich A (2004) Framing ADHD Children: A Critical Examination of the History, Discourse, and Everyday Experience of Attention Deficit/Hyperactivity Disorder. Lanham, MD: Lexington Books. Rayner JA, Pyett P and Astbury J (2010) The medicalisation of “tall” girls: A discourse analysis of medical literature on the use of synthetic oestrogen to reduce female height. Social Science & Medicine 71(6): 1076–1083. Reid R and Maag JW (1997) Attention deficit hyperactivity disorder: Over here and over there. Educational and Child Psychology 14(1): 10–20. Reid R, Maag JW and Vasa SF (1993) Attention Deficit Hyperactivity Disorder as a disability category: A critique. Exceptional Children 60(3): 198–214. Ross PA (2005) Sorting out the concept disorder. Theoretical Medicine and Bioethics 26(2): 115–140. Ross PA (2007) The fact value dichotomy in demarcating disorder. Philosophy, Psychiatry, and Psychology 14(2): 107–109. Rutter M (2001) Child psychiatry in the era following sequencing the genome. In: Levy F and Hay DA (eds) Attention, Genes and ADHD. East Sussex; Philadelphia, PA: Brunner-Routledge, pp. 225–248. Scadding JG (1996) Essentialism and nominalism in medicine: Logic of diagnosis in disease terminology. Lancet 348(9027): 594–596. Schrag P and Divoky D (1975) The Myth of the Hyperactive Child and Other Means of Child Control. New York: Pantheon Books. Sedgwick P (1982) Psycho Politics. New York: Harper & Row. Singh I (2002) Bad boys, good mothers, and the “miracle” of Ritalin. Science in Context 15(4): 577–603. Singh I (2005) Will the “real boy” please behave: Dosing dilemmas for parents of boys with ADHD. The American Journal of Bioethics 5(3): 34–47. Singh I (2006) A framework for understanding trends in ADHD diagnoses and stimulant drug treatment: Schools and schooling as a case study. BioSocieties 1(4): 439–452.

Downloaded from hea.sagepub.com at St Petersburg State University on February 12, 2014

17

Bowden

Singh I (2007) Clinical implications of ethical concepts: The case of children taking stimulants for ADHD. Clinical Child Psychology and Psychiatry 12(2): 167–182. Singh I (2008) Beyond polemics: Science and ethics of ADHD. Nature Reviews Neuroscience 9(12): 957–964. Singh I (2011) A disorder of anger and aggression: Children’s perspectives on attention deficit/ hyperactivity disorder in the UK. Social Science & Medicine 73(6): 889–896. Still GF (1902a) The Goulstonian Lectures on some abnormal psychical conditions in children: Lecture I. The Lancet 159(4102): 1008–1012. Still GF (1902b) The Goulstonian Lectures on some abnormal psychical conditions in children: Lecture II. The Lancet 159(4103): 1077–1082. Still GF (1902c) The Goulstonian Lectures on some abnormal psychical conditions in children: Lecture III. The Lancet 159(4104): 1162–1168. Tait G (2005) The ADHD debate and the philosophy of truth. International Journal of Inclusive Education 9(1): 17–38. Thurber S, Sheehan W and Roberts RJ (2009) Attention Deficit Hyperactivity Disorder and scientific epistemology. Dialogues in Philosophy, Mental and Neuro Sciences 2(2): 33–39. Visser J and Jehan Z (2009) ADHD: A scientific fact or a factual opinion? A critique of the veracity of Attention Deficit Hyperactivity Disorder. Emotional and Behavioural Difficulties 14(2): 127–140. Visser SN, Blumberg SJ, Danielson ML, et al. (2013) State-based and demographic variation in parent-reported medication rates for Attention-Deficit/Hyperactivity Disorder, 2007–2008. Preventing Chronic Disease 10: E09. Visser SN, Lesesne CA and Perou R (2007) National estimates and factors associated with medication treatment for childhood Attention-Deficit/Hyperactivity Disorder. Pediatrics 119(Suppl. 1): S99–S106. Wakefield JC (1992) The concept of mental disorder: On the boundary between biological facts and social values. The American Psychologist 47(3): 373–388. Wakefield JC (2000) Spandrels, vestigial organs, and such: Reply to Murphy and Woolfolk’s “The Harmful Dysfunction Analysis of mental disorder.” Philosophy, Psychiatry, and Psychology 7(4): 253–269. Wakefield JC (2003) Dysfunction as a factual component of disorder: Reply to Houts, part 2. Behaviour Research and Therapy 41(8): 969–990. Wakefield JC (2007) The concept of mental disorder: Diagnostic implications of the harmful dysfunction analysis. World Psychiatry 6(3): 149–156. Wender PH (1979) The concept of adult minimal brain dysfunction (MBD). In: Bellak L (ed.) Psychiatric Aspects of Minimal Brain Dysfunction in Adults. New York: Grune & Stratton, pp. 1–13. Wheeler L (2010) Critique of the article by Visser and Jehan (2009): ADHD: A scientific fact or a factual opinion? A critique of the veracity of attention deficit hyperactivity disorder. Emotional and Behavioural Difficulties 15(3): 257–267.

Author biography Gregory Bowden is a recent doctoral graduate from the Department of Sociology at the University of Alberta. His major research interest is the role social norms play in demarcating, measuring, and treating disorder, with his dissertation’s major findings relating to how identification, measurement, and treatment for ADHD are inseparable from social norms about proper and desired conduct, culminating in the task of producing individuals who can be ascribed responsibility for their actions. His current research focus is applying these findings to other social institutions, looking at how they justify and enforce the attribution and distribution of moral responsibility.

Downloaded from hea.sagepub.com at St Petersburg State University on February 12, 2014

The merit of sociological accounts of disorder: The Attention-Deficit Hyperactivity Disorder case.

This article argues in favor of a sociological perspective on health and illness, drawing on recognized positions from the philosophy of health and il...
417KB Sizes 0 Downloads 0 Views