Owning up to Complexity: A Socio-cultural Orientation to ADHD
Jack S. Damico, Ph.D., Nicole Müller, DPhil,. And Martin J. Ball, Ph.D.
The University of Louisiana at Lafayette
Address: Jack S. Damico, Ph.D. P.O. Box 43170 The University of Louisiana at Lafayette Lafayette, Louisiana 70504-3170 (337) 482-6551
[email protected] 1
Abstract To enrich our conception of ADHD, it is necessary to take a wider orientation to this disability category than has traditionally been advocated. Over the past decade there has been an emerging conception of ADHD from a social-cultural perspective and this orientation, when linked to the traditional bio-medical perspective, provides a more accurate and authentic construct of ADHD. In this article, we advocate that speech-language pathologists approach ADHD with a mindset that is open to the complexities of context-bound human functioning at all levels. Four sources of data demonstrating the richness of the socio-cultural orientation are presented and clinical implications are detailed
Keywords: ADHD, complexity, socio-cultural perspective
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Attention Deficit Hyperactivity Disorder (ADHD) has been discussed as a medical condition with various psychological and educational implications since its first entry as a diagnostic category in the Second Edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-II) (American Psychiatric Association, 1968). From this first mention as “hyperkinetic reaction of childhood” until the more commonly recognized label of ADHD, the assumption has been that this disability category represents a subtle neurological deficit resulting in a negative impact on affect, behavior and learning (e.g., Cantwell, 1996; Castellanos, 1997). Consistent with this orientation, the vast majority of articles focusing on this disorder take a biomedical perspective (Damico, Damico, & Armstrong, 1999). This predominant medical orientation has created a set of beliefs about the nature of ADHD that have informed both our perceptions of ADHD and our clinical practices. As a result, ADHD is listed in both the Diagnostic and Statistical Manual for Mental Disorders (DSM IVTR) (American Psychiatric Association, 2000) and the 10th edition of the International Classification of Diseases (ICD-10) (World Health Organization, 2002) as a medical condition and it has a long history of medical diagnosis and pharmacological treatment (e.g., Frick & Lahey, 1991; Reid, Maag, & Vasa, 1994; Klasen, 2000; Safer, 1997). For the most part, this perspective has been successful. Many of the issues currently addressed in the literature of ADHD and even the majority of the articles in this volume show the advantages of this traditional orientation and its various clinical applications. The Emerging Social Perspective on ADHD Over the last decade, however, an emerging orientation has gained attention and appears to hold promise for extending and enhancing our clinical practices regarding ADHD; namely the consideration of ADHD from a socio-cultural perspective. This orientation views ADHD as 3
multi-faceted and more complicated than originally conceived (e.g., Cantwell, 1996; Hill & Cameron, 1999; Klasen, 2000). For example, Whalen and Henker (1997) have advocated a view of ADHD as a unique constellation of problems arising from both biological and social/ contextual variables that often result in negative impact in multiple domains of functioning. For this reason, an individual diagnosed as ADHD may not present apparently consistent symptoms. Rather, he/she may exhibit different symptoms at different times and in different situations. This is due to the fact that the manifestations of ADHD are heavily influenced by various contextual variables (Jensen, Mrazek & Knapp, 1997). Indeed, multiple experiences with this observation have prompted some researchers and clinicians to refer to ADHD as an “environmentally dependent disorder” (Powler, 1994). Based on experiences like this one, there is a call for greater variation in conceptualization of ADHD and in how this conceptualization informs both the kinds of treatment advocated and the contexts within which treatment occurs (e.g., Barkley, 1998; Cherkes-Julkowski, Sharp, & Stolzenberg, 1997; DuPaul & Eckert, 1997; Mulligan, 2001; Pelham & Gnagy, 1999). Thus there is now a body of work that advocates the description and interpretation of the behavioral symptom-complex collectively labeled as ADHD within the multiple, nested complex systems represented by the human organism interacting with its environment. Complex systems have been variously defined (see e.g. Bar Yam, 1997; 2003). A classic definition of a ‘problem of organized complexity’ is that of a problem that involves ‘dealing simultaneously with a sizable number of factors which are integrated into an organic whole’. (Weaver, 1948: 539). A readiness to embrace the notion of complexity in general and the importance of sociocultural variables operating within ADHD specifically is effectively demonstrated in Barkley’s (1997a) “biopsychosocial model” of ADHD. As an attempt to create a unified model of ADHD, 4
Barkley has woven together the different elements of this disability condition and stressed the need to focus on the potential biological substrate, its psychological operational impact, and the social reactions that might act to reduce or exacerbate these psychological manifestations (see Damico, Tetnowski & Lobdell, this volume). As a leading researcher and author in the area of ADHD, Barkley’s increased emphasis on social and contextual variables has significantly extended the awareness of the socio-cultural facet of ADHD. Importantly, such an emphasis encourages a richer perspective on ADHD; one that involves the more complex and socially relevant phenomena that are so important to our understanding of ADHD and how it operates in the real world. By employing such a socio-cultural perspective, we are better able to recognize the complexity of issues involved with ADHD and its impact on individuals identified as exhibiting this disability. This awareness and knowledge, in turn, can increase the effectiveness and efficacy of our ADHD service delivery. Given the promise and importance of the socio-cultural orientation to ADHD, this article will highlight some of the emerging issues within the socio-cultural perspective. By reporting on some of the social and cultural issues involved in ADHD, we aim to provide the practicing clinician with a richer conception of this disability category, its social implications, and a perspective of how ADHD operates as a component of social action. Based upon these considerations, some specific implications for ADHD service delivery will be discussed. Relevant Data Sources Generated by the Socio-cultural Orientation While there are a number of important socio-cultural issues and data points that can enrich our conception of ADHD and inform our service delivery, we will discuss only a few. However, through these examples of relevant data and concepts we hope to illustrate the advantages and necessity of employing this more inclusive socio-cultural orientation to ADHD. 5
ADHD as a Synergistic Phenomenon Within the last decade the emerging orientation to ADHD as a more socio-cultural phenomenon has employed an application of systems-theory as an explanatory mechanism. This particular version of systems-theory recognizes that social phenomena such as the behaviors manifested by students with ADHD are synergistic in nature. That is, they are dependent on the complex and dynamic interplay between the genetic/biological traits of the individual and the myriad variables available in the environment (e.g., Bateson, 1972; Weaver, 1993). In fact, it is this very interplay between the internal and external environments that uniquely characterizes those behaviors that are symptomatic of ADHD. Within this synergistic conception, there is little need to engage in a debate regarding the impact of the biological/neurological variables versus environmental/contextual variables as causal factors in ADHD. Rather, this disability condition is viewed as consisting of both dimensions. That is, the individual’s traits and characteristics (e.g., lack of inhibitory capacity) interact with environmental/contextual factors (e.g., classroom teacher’s expectations) to influence one another and create the behavioral manifestations that we have come to expect in ADHD. In fact, one might even suggest that a strict dividing line between internal and external factors, or factors pertaining to an individual human being versus factors pertaining to the environment in which this human being functions is an artificial construct. A human being does not function ‘context-free’, and every observed behavior should therefore be described and analyzed as a contextualized, rather than an isolated phenomenon. Weaver (1993; 1994) has discussed the implications of a systems-theory approach to ADHD. She suggests that the best understanding of ADHD is as a social construct and that it should be viewed not so much as a disorder but, rather, as a “set of dysfunctional relationships 6
between an individual with certain predispositions and an environment that generates certain expectations, demands, and reactions.” (1993: 80). Perhaps the most important point taken from this socio-cultural concept is that the synergistic characterization of ADHD is consistent with Barkley’s emphasis on environmental/contextual variables. That is, the impact of the complex internal states summarized and diagnosed, or labeled, as ADHD will interact with, and may be exacerbated by environmental/contextual constraints, demands, and expectations. The key, then, would be to recognize the transactional impact of not only the individual’s behavioral predispositions but also the impact of the environment on these predispositions. ADHD as a Contested Diagnostic Category Once ADHD is viewed from a socio-cultural perspective, even the concept of ADHD as a disability category becomes a more complex issue. In reality, ADHD is not an objective and easily verifiable empirical construct, that would be comparable to and quantifiable in the same way as, for example, brain damage after CVA. Rather, it is a social construct and it has been argued that the diagnostic criteria employed for its identification have been constructed on the basis of a number of socio-cultural factors that mirror the prevailing ideologies in vogue at any given time (e.g., Reid, Maag, & Vasa, 1994; Shaywitz, Fletcher, & Shaywitz, 1994). This means that the diagnostic category of ADHD may be complicated by ambiguity and subjectivity and this lack of definitional rigor may result in various types of problems. Most relevant to the clinical context, the socio-cultural perspective situates ADHD as a potentially contested diagnosis. That is, there may be controversy surrounding the legitimacy of ADHD as an authentic disability category. In his book, Illness and culture in the postmodern age, Morris (1998) has discussed this possibility for a number of illnesses and/or diagnostic categories. He has suggested that ADHD and some other socially constructed diagnostic 7
categories (e.g., Gulf war syndrome, chronic fatigue syndrome, multiple personality disorder) may be defined as “postmodern illnesses”. This term is used for categories of illness or behavioral states that are vaguely and subjectively defined and that are controversial with regard to their legitimacy as real illnesses. According to Morris, these diagnostic categories often puzzle mainstream medicine, are sensationalized and augmented by the popular media, are confusing to the general public and have a tendency for abuse by working professionals. Morris explains this pattern of attention and abuse by suggesting that rather than legitimate and objective disease states or disability conditions, these specific illnesses represent changing patterns of human experience and affliction that are shaped by the convergence of biological states, cultural beliefs and social actions. In fact Morris and others (e.g., Armstrong, 1997a; Breeding & Baughman, 2001; Klasen, 2000) express concern regarding whether these postmodern illnesses are real biomedical conditions or just exaggerated responses to other sociocultural stresses or expectations. For example, Armstrong (1997b) has suggested that the labeling of a child as ADHD may often be less the result of a neurological condition and more due to a developing tendency of society to treat teachers’ and parents’ anxieties regarding childhood by routinely drugging children into good behavior; that is, social control through medication. In the case of ADHD, there are legitimate concerns regarding the actual diagnostic category. A number of researchers have expressed concern regarding ADHD’s vague set of behavioral criteria and the lack of basic biological diagnostic certainty. This research indicates that as a diagnostic entity, ADHD’s behavioral criteria are too vague and confusing to provide a clearly delineated disability construct (e,g, Damico, Augustine & Hayes, 1996; Reid, Maag, & Vasa, 1994; Shaywitz, Fletcher, & Shaywitz, 1994) and the existence of a biological etiology for 8
ADHD is not substantiated; much of the research into the etiology of ADHD is inconclusive and even contradictory. As stated by Reid, Maag, and Vasa, “...the nature of presumed underlying organic deficits (if any) remains a mystery, and evidence in support of any particular etiology is sparse.” (1994, p. 202). As a general disease state or diagnostic category, of course, there are far more research findings and publications that support the existence of ADHD. At worst, it is a controversial topic. On an individual basis, however, the qualities inherent in this social construct (e.g., vague and confusing diagnostic criteria, a tendency to employ to medication for behavioral control, the ease of shifting responsibility to a disease state rather than parental or teacher effectiveness, or other environmental factors such as the organization of the school day) may result in an overidentification or misdiagnosis of children as ADHD. This tendency for the social construction of disability, the assignment of handicapping labels, and an abuse of this social construct has certainly been documented in other areas such as learning disabilities (Coles, 1988; Taylor, 1991). Of course, disabilities and handicaps are to an extent always socially constructed, in that their perceived severity is context-dependent, and at least partly context-created. A quantifiable impairment such as age-related reduction in hearing (even within ‘age-normal’ limits) may constitute a career-destroying handicap for the conductor of a symphony orchestra, but not for someone in a different walk of life. Consequently, as clinicians we should not simply reify labels such as ADHD and consider them as ‘absolute’, objective categories. Rather, we should be circumspect with regard to our beliefs about the validity of this diagnostic category. Above all, we should carefully consider how important it is to properly identify children with true ADHD and we should avoid the tendency to label children without definite and objective data to support a diagnosis. 9
Too often we operate within our cultural milieu without a critical analysis of our practices and the conceptualizations that underlie them. The problem with this, of course, is that we might become blind to our poorly justified practices or tendencies or we might ignore new or inconsistent data that could potentially undermine our assumptions about what ADHD is and how it should be addressed, and indeed who should be labeled ADHD. Therefore, we must be circumspect with our current conceptualizations and practices. By employing a more sociocultural orientation, we can turn our analytic powers onto the very contexts and assumptions that we often take for granted when working with ADHD and we can better serve the needs of our clients. The Influence of Social/Contextual Variables on ADHD Inherent in the socio-cultural orientation to ADHD is the contention that the behaviors, the diagnostic indices, and the consequences of ADHD do not exist or operate in isolation, devoid of context or functionality; to make an impact, ADHD literacy must operate in a situated context. This is the primary point of the synergistic description previously discussed. On a practical level, this means that we must recognize that there are numerous social and contextual variables that influence the impact of ADHD, and the severity of the symptoms so labeled. Jensen, Mrazek and Knapp (1997) emphasize this point when they describe ADHD as a “disorder of adaptation”. Based upon their research and experience, they discuss the fact that ADHD may manifest itself differently in different environments. That is, a child may exhibit different kinds of symptoms, at different degrees of severity, and even greater or lesser degrees of success at a given constellation of tasks, depending on how the context (both physical and social) reacts to his/her behavioral predispositions. In one context, the impact of the ADHD might be significantly reduced while in another the problems might be exacerbated. In each 10
case, it is the interaction of contextual variables with behavioral predispositions that make the difference. An unfavorable constellation of factors (for example, repeated insistence on timed activities carried out in sequence, in an inflexible schedule without sufficient ‘downtime’ on the one hand, and a predisposition towards short attention span, and distractibility on the other) can result in a positive feedback loop of reactions and behaviors that neither the child nor the persons around him/her are capable of deconstructing. A review of the literature in ADHD does support this “disorder of adaptation” contention (e.g., Cooper, 1997; DuPaul & Eckert, 1997; Mandal, Olmi, & Wilczynski, 1999). Hill and Cameron (1999), for example, documented that the timeon-task and the level and degree of over-activity in ADHD children are highly dependent on how interested they are in a task initially and the kind of social encounter that is involved. Based upon their data, they provide detailed instructions on how to be cautious in the screening and identification of children with ADHD tendencies. Similarly, the comprehensive research of Bussing and colleagues (e.g., Bussing, Schoenberg, & Perwien, 1998; Bussing, Schoenberg, Rogers, et al, 1998; Bussing, Zima, Gary, & Garvan, 2003) details the influence of cultural, racial, gender, and ethnicity factors in the identification and the assessment of ADHD. In much of this research these variables tended to impact identification and the judgment of severity regardless of whether the differences existed in the children being assessed or in the adults doing the evaluations. Social and contextual variables were even more pronounced when their impact on the accessibility and effectiveness of treatment was studied. Ingram, Heckman and Morgenstern (1999) found that the prognosis for treatment success for ADHD was heavily influenced by many factors including the socioeconomic status of the family, the social interactions within the family constellation, the ways that the family handled adversity, the personality traits of the 11
individuals that interacted with the ADHD child. Research has documented many other sociocultural variables as well. The type, degree and frequency of intrinsic rate of reward during treatment (e.g., Corkum, Rimer, & Schachar, 1999; Damico, Augustine & Hayes, 1996), the kinds of explanatory models that the family has regarding ADHD (e.g., Bussing, Schoenberg, & Perwien, 1998; Bussing, Schoenberg, Rogers, et al, 1998; Corkum, Rimer, & Schachar, 1999), the ease of accessibility to treatment (Bussing, Zima, & Berlin, 1998a), the cultural, racial, and ethnic backgrounds of the children (Bussing, Zima, Berlin, 1998b; Weisz, Suwanlert, Chaiyasit, et al, 1988 ), even the parents perceptions of ADHD and the efficacy of the interventions (e.g., Barkley, Anastopoulos, Guevremont, & Fletcher, 1992; Bussing, Schoenberg, Rogers, et al, 1998; Bussing, Zima, Gary, & Garvan, 2003; Weisz, Suwanlert, Chaiyasit, et al,1988) are all examples of how ADHD service delivery is influenced by social and contextual variables. To best meet the needs of our clients with ADHD, therefore, it is essential that we account for as many of these variables as is possible. The socio-cultural perspective provides us with the best opportunity meet these requirements. The Impact of ADHD on Significant Others Our final example of socio-cultural issues that can enrich our ADHD service delivery involves the impact of ADHD on the social context itself. In a very detailed analysis of the social facets of ADHD, Frederick and Olmi (1994) noted that not only are children with ADHD more likely to be rejected by their peers, the ADHD operates to modify the social context so that all social interaction is negatively affected. Campbell, Endman, & Bernfeld (1977), for example, found that teachers who focused on the behaviors of a child with ADHD tended to direct more negative attention to their classes in general than when compared with teachers that did not have children with ADHD present. Similarly, Cantwell (1996) Barkley (1997b), and Powler (1994), 12
documented problems with the social relationships and the contexts within which social encounters occur as a result of ADHD. One area of detailed research looks at the effects of ADHD on the family constellation and the social context that is created and employed in homes where an individual with ADHD is present. In this work, Lewis-Abney (1993) found significant negative correlates of family functioning in the presence of ADHD and Kendall (1997; 1998; 1999) found similar difficulties when investigating the impact of ADHD on the diagnosed child’s siblings, on the ways in which the social aspects of ADHD negatively affected the families, and on how much additional effort families were required to employ to reduce the negative influence of ADHD in the social context of the home. This negative influence was present across the age range from young children through to adolescence. Indeed, Barkley, Anastopoulos, Guevremont & Fletcher (1992) noted significant negative changes in mother-adolescent interactions that carried over to family belief systems. Clearly, the ADHD negatively influenced not only the social abilities of the identified individuals but the abilities of those around them as well. Given the importance of social and contextual variables in treatment accessibility and prognosis, this information is quite problematic. Clinical Implications from the Socio-cultural Orientation to ADHD While these four data sources reveal only a portion of the valuable information that can be derived from the socio-cultural orientation to ADHD, the data described and the concepts employed suggest several important implications for ADHD service delivery. First, these data sources support the conception of ADHD as a complex social phenomenon. Consequently, it is important that the practicing clinician adopt a more robust conception of ADHD, one that is more socially situated and more contextualized. It is not 13
enough to take a biomedical perspective; as with all human phenomena, social and cultural factors do hold sway and must be taken into account. Second, with regard to service delivery, the approaches to both assessment and intervention must be more reflective of the underlying complexity of ADHD as situated in the socio-cultural context. Assessment must be more functional, descriptive, and contextualized (e.g., Damico, Damico & Armstrong, 1999; Hill & Cameron, 1999; Maag & Reid, 1994; Mandal, Olmi, & Wilczynski, 1999) and there needs to be a move away from a reliance on normreferenced tests that are poorly suited to describe the behaviors noted in ADHD (Barkley, 1998). Additionally, care should be taken when employing singular approaches to assessment and this caveat applies most specifically to rating scales (Vitaro, Tremblay & Gagnon, 1995; see Pierce and Reid, this issue). Since the context is so important to the impact of ADHD, any assessment should strive to employ comparisons within the classroom contexts and comparison “norms” should always be determined (Fabiano & Pelham, 2003). As the phenomenon under analysis, ADHD is simply too complex to allow a simplistic notion of assessment. With regard to treatment, the approaches employed must be specifically designed to fit the needs of the particular child (Conners, 2000) and to account for the constellation of variables that affect prognosis. Barkley (1995) has advocated a ten principle-centered approach and while it has been primarily directed toward parents, it is designed to address both the synergistic nature of ADHD and the need for incorporating the socio-cultural context. By striving for consistency and focusing on the actual symptoms, these principles create both a developmental and a functional intervention framework. Third, in order to learn more about the complexity of ADHD from a socio-cultural perspective, there needs to be a greater focus on research and research methods that can address 14
the complexity of ADHD and that can do so within an authentic context. This can be accomplished by employing qualitative research methodologies that are designed to address complexity rather than ignore it (Damico & Simmons-Mackie, 2003). Within the area of ADHD research there have been a number of excellent demonstrations of how qualitative research can be employed (e.g., Bussing, Schoenberg, & Perwein, 1998; Bussing, Schoenberg, & Rogers, 1998; Damico & Augustine, 1995; Fabiano & Pelham, 2003; Kendall, 1997; 1998; 1999; Kendall, Hatton, eckett, & Leo, 2003; Reid, Hertzog, & Snyder, 1996; Weisz, Suwanlert, Chaiyasit el at., 1988) but much more is needed. Finally, the practicing speech-language pathologist must be circumspect in how they approach the construct of ADHD. Once we employ a socio-cultural orientation that may enhance the bio-medical perspective, we must be willing to constantly employ all our analytic skills to ensure that we account for this enriched construct and its complexity. To do otherwise reduces our effectiveness and the potential improvement of our ADHD clients. Conclusion When dealing with children diagnosed as ADHD we will be more efficient and effective in the long run if we embrace the reality of the multiply nested complex system that interacts in all aspects of human functioning. We need to be capable of contextualizing a medical diagnosis, such as a diagnosis of ADHD, and then we should strive to discover the reality behind the label and the individuality of each client’s condition. As we mentioned above, each handicapping condition and disability is a social construct. We may add here that how we deal with handicapping conditions and disabilities is equally socially constructed, and the ideological, or theoretical, orientation of the ‘expert’ (the pediatrician, child psychologist, speech-language pathologist) is of crucial importance here. A context-bound, socio-cultural outlook on ADHD of 15
necessity needs to adopt the stance reminiscent of what Luria (1987b, p. 6) calls “romantic science”, namely an approach that attempts “neither to split living reality into its elementary components nor to represent the wealth of life’s concrete events in abstract models that lose the properties of the phenomena themselves. It is of utmost importance to romantics to preserve the wealth of living reality, and they aspire to a science that retains this richness.” This “wealth of living reality”, the functioning of a child diagnosed with ADHD, and her/his family members, in the multiple contexts of daily life, may not lend itself to a reductionist approach of quantification (in Luria’s terms (1987a) the “classical” approach in science) as biological or physiological factors that can be measured in a controlled setting. However, this does not mean that we can ignore this ‘messy’ and complex reality. Indeed, this complexity is what socio-cultural functioning is all about and to ignore it in our ADHD service delivery would be both unsatisfactory and non-efficacious.
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Self Evaluation Questions for Owning up to Complexity: A Socio-cultural Orientation to ADHD
1. The Emerging Perspective of ADHD a. Provides a clearer vision of pharmacological issues in ADHD b. Employs an experimental research format as its primary innovation c. Provides a socio-cultural view of ADHD d. Requires a focus on bio-medical issues 2. Barkley’s biopsychosocial model of ADHD: a. Focuses greater attention on pharmacological treatment b. Stresses the impact of prior schooling c. Provides a greater emphasis of a triad of variables d. Reduces the focus on social variables in ADHD 3. A “post-modern” critique of ADHD: a. Reviews the literary contributions of authors with ADHD b. Questions the existence of ADHD as a diagnostic category c. Advocates a language arts approach to intervention d. Provides an analysis of ADHD as portrayed in fiction 4. Which of the following may be seen as a cognate of ADHD in terms of its identity as a postmodern illness? a. Heart Disease b. Diabetes c. AIDS d. Multiple Personality Disorder e. Traumatic Brain Injury 5. When referring to ADHD as a “disorder of adaptation”, the intent was to highlight: a. The manifestations of ADHD are overt b. The manifestations of ADHD require conscious effort to exhibit c. ADHD is independent of the context d. The manifestations of ADHD are context dependent e. The manifestations of ADHD are medically fragile Answers: 1-c 2-c 3-b 4-d 5-d 22
