Perceptions of attention deficit hyperactivity disorder in one African American community Davison, Judy C: Ford, Donna Y: The Journal of Negro Education 70:4 [Fall 2001] p. 264-273 The incidence of students being identified with Attention Deficit Hyperactivity Disorder (ADHD) is on the rise, yet few studies have examined the perceptions held by families of this special needs population. More specifically, what views do the parents and educators hold about the causes and treatment of ADHD? This ethnographic study took place in an urban school district. Forty-five hours of semi-structured interviews were conducted with 25 participants associated with four urban schools. The participants were African American parents and educators, and members of the medical community who work with African American parents and their children. Results of the interviews suggest that these participants have a socially constructed view of ADHD and are less likely to diagnose and use stimulant medication for the treatment of ADHD. According to the U.S. Drug Enforcement Agency (DEA), Attention Deficit Hyperactivity Disorder (ADHD) has become the most common psychopathology of children in the United States with a reported 600% increase in the use of stimulant medications to treat this "disorder" since 1990 (DEA, 2000). This growing phenomenon has prompted numerous studies. However, there are few studies specific to African American children. There have been studies examining the amount of knowledge and information about ADHD among African American parents (Bussing, Schoenberg, & Perwien, 1998) but few, if any specifically address the beliefs or perceptions of that population about ADHD. Furthermore, a review of the literature reveals that information about beliefs held by lower socioeconomic status (SES) African Americans is needed to enhance that body of knowledge (Ardila, 1995; Rostain, Power, & Afkins, 1993). In 1973, Draguns noted that "whether an individual's behavior constitutes 'psychopa thology' was dependent upon the attitudes, expectations, and prevailing patterns of adaptation within the society in which the behavior occurs" (see also Marsella, 1979). Therefore, a particular form of behavior may be considered deviant in one society or culture but quite acceptable in another. Because identical behavior may be perceived-and responded to-differently in different cultures, it is important to make culturally influenced attitudes a focus of research on psychopathology. Culturally specific health beliefs determine whether one seeks medical care. However, very little research has been conducted that examines how ethnicity influences perceptions and practices concerning ADHD (Bussing, 1998). Phinney (1996) concluded, "it is necessary to unpack the packaged variable of ethnicity" (p. 918). While race and SES are often strongly correlated, the terms are nevertheless not interchangeable. As noted earlier, the focus of this research is on ethnic, not class beliefs. For the purposes of this study, "ethnic" group refers to the African American population. Of course, within an ethnic group, whose members share a relatively precise ethnic label, there is a tremendous heterogeneity. That is, they differ in terms of social class, education, immigration history, geographical region, and family structure. Caution must be used as to not over generalize the entirety of the African American population. Bussing, Schoenberg, Rogers, Zima, and Angus (1998) suggest that African Americans have less knowledge about ADHD because ADHD has not become part of the "collective consciousness" of their communities and, thus, serves to undermine the medical label (Bussing, Schoenberg, Rogers, et al., 1998). Understandably, if no one in the social network is talking about "medically recognized symptoms," a parent would be less likely to view a child's behavior as pathological. Subsequently, there would be no reason for a parent to actively seek information about a condition that few, if any, in his or her community believes is an actual medical condition. It is possible that what the medical community defines as either abnormal or as ADHD behaviors are perceived by African American parents as either normal or behaviors) that the child will outgrow. Those parents would not see the child as needing professional intervention. Furthermore, some parents may also view the ADHD label as a mechanism to target African American children for discriminatory purposes. Therefore, it may not be a lack of knowledge of ADHD among those parents. Rather, these parents may question whether medical and educational professionals are trustworthy in making evaluations about their children. Health behavior is believed to be strongly influenced by knowledge or beliefs held by individuals and their networks. To ascertain the knowledge or beliefs of parents of children considered as high risk for ADHD, Bussing, Schoenberg, and Perwien (1998) surveyed 486 African American and White parents of children at high risk for ADHD. The results revealed significant ethnic differences in knowledge and sources of information about ADHD. Fewer African American parents indicated that they had heard of ADHD (69% compared to 95%) or that they knew "some" versus "much" about it (39% compared to 70%). Furthermore, even though the physician was listed as the most preferred information source for both groups, only 17.5% African Americans reported they had received information about ADHD from a physician compared to 29% of the Whites interviewed. Based upon these findings, Bussing, Schoenberg, and Perwien surmised that minority children might be less likely to receive services for ADHD. Interestingly, a study by Rostain et al. (1993) found that the degree of the mothers' knowledge regarding ADHD was negatively correlated to their willingness to accept stimulant medication as a treatment. This finding was in contrast to those of Weisz, Suwanlert, Chaiyasit, Weiss, and Jackson (1991) who found a moderate and significantly positive relationship between knowledge about ADHD and the social acceptability of methylphenidate (stimulant medication). They stated, "Well-informed parents have greater cautiousness when medication is being considered for their own children as compared with hypothetical case vignettes" (p. 179). Even though Weisz et al. may have had the assumption that one only gets knowledge through literature or contact with professionals, we must not discount the knowledge that one accrues from life experiences and careful observations. Therefore, even though the African American parents reported less use of and less preference for written information materials than White parents, that does not mean they have no knowledge. Their knowledge may simply be from a different source. Bussing, Schoenberg, Rogers, et al. (1998) offered that substantially more research should be undertaken to examine the relationship between ethnicity and ADHD knowledge. In light of these findings, there is a need to understand the perceptions and attitudes of African American parents, which ultimately affects whether they choose to seek information or medical attention for ADHD. If parents do not believe ADHD to be a physical disability or health problem, then they are not likely to seek information and assistance. METHOD Qualitative inquiry is the avenue through which interactions between individuals can be best examined (Rorty, 1989; Smith, 1993; Sullivan, 1986). An examination of this topic through the use of interpretivist principles provides a rich understanding of the perceptions and interactions of the participants in the decision to label and treat children for ADHD in a midwestern African American community. It was not the goal of the study to build a random sample, but rather to select forthright individuals who had much experience in working with African American parents and their children. In accordance with Maykut and Morehouse (1994), it is the first author's working knowledge of the contexts of the individuals and settings that lead her to select the participants for initial inclusion in the study. Participants The population of the area was 112,000. The participants were African American and White educators, medical personnel, and social workers/counselors who work with parents of children attending four inner city schools with a large African American population. Of the 25 participants in this study, 18 were elementary school personnel, and 7 were associated with the medical community. The elementary school personnel group included 10 teachers, 6 school administrators, and 3 school counselors/social workers. The participants associated with the medical community included 2 physicians, 2 private practice nurses, 5 school nurses, and 1 pharmacist. Looking at the participants by ethnicity; 5 of the 10 teachers were African American and the other 5 were White. All 6 school administrators were African American, 1 social worker was African American and 2 were White. Finally, 9 of the 10 medical personnel were White. Participants were experienced in their professions with all but 2 participants having at least 15 years of work experience. It is worth noting that 2 of the teachers and the pharmacist spoke from dual roles as professionals and as parents of a child diagnosed as ADHD. Procedure Even though the first author did not know the participants prior to this process, she did have "gatekeepers" who helped develop participant trust and openness more quickly than may have happened otherwise. Participants were located through referrals from individuals contacted that have worked with this population as well as leaders in the African American community. As the interviews progressed, additional names of participants surfaced. Important leads were identified in the early phases of data collection and pursued by asking new questions and/or interviewing additional individuals. As Glesne and Peskin (1992) suggested, this emergent research design sample composition evolved during the study. This approach in selecting participants offered flexibility and an opportunity to reach a broader group of interviewees (Glesne & Peskin, 1992; Taylor & Bogdan, 1984). Semi-structured interviews were conducted by combining an exploratory and structured approach. The interviews were initially semi-structured but became more structured or focused in the follow-up interviews as themes in areas of importance to the participants became evident (Berg, 1995). The first author conducted each interview. Each formal interview lasted 1-1 1/2 hours. Even though the sample was relatively small, a total of 45 hours of interviews were conducted in addition to less formal phone conversations. The interview questions focused on the perceptions of individuals working with ADHD children within the school, home, and medical settings. The interviews were taped, transcribed, and then analyzed using a constantcomparative, emergent theme approach. At the end of each interview and observation, the senior author either taped or wrote extensive field notes reflecting the experience. However, one does not react from just one's own standpoint. There is a "fusion of self to other-an interaction to each person's own meaning and interpretations and intentions" (Smith, 1993, p. 196). The field notes and reflective journal throughout this process encouraged self-inquiry as the author viewed her own intentions and meaning, her own reasons and responses as recommended by Smith (1992). As Krall (1988) indicated, one can learn much from selfreflection on one's own motivations and reasons for actions and understanding interactions with others. Lincoln (1989) reiterated this approach when she stated that we must examine "how we behave, both as inquirers and toward our respondents and co-participants in the inquiry process" (pp. 27-28). These field notes ultimately became part of the data and analysis. Once the interviews and reflections were transcribed, emerging themes/categories were noted in the wide margins of the transcripts. A file by categories of participants assisted in visualizing any common views/perceptions among the groups. Ultimately, these categories or themes became sections in the findings of this work. RESULTS The findings in this inquiry are consistent with a socially constructed view of ADHD. Repeatedly, African American parents and those interacting with African American parents expressed a socially constructed view of ADHD and were less amenable to the diagnosis than White middle-class families in the same region who tend to embrace the biological determinist point of view (see Davison, 2001; McGuinness,1989). This is an example of Hacking's (2000) contention that "disability as a category can only be understood within a framework which suggests that it is culturally produced and socially structured" (pp. 38-39). Five themes emerged from the participants and can be categorized into the following social structures: (a) distrust of the educational system; (b) perceived lack of cultural awareness of White educators; (c) perceived social stigma of the ADHD label; (d) concern about drug addiction; and (e) pressure from political forces. The following sections provide sample quotes from the participants that illustrate typical responses that offered evidence for the socially constructed view of ADHD and resistance to the diagnosis. Distrust of the System In this African American community, there are indications of deep-seated resentment about suggestions of racial differences in intelligence and a disproportionately high percentage of African American children being identified as mildly mentally retarded (MMR) for special education programs. The State Department of Education cited this district for overrepresentation of minorities in special education programs in the mid-1990s. MacMillan and Reschly (1998) hypothesized that the attitudes held by many toward categories such as MMR and SED are both stronger and more negative when overrepresentation is evident as such evidence might reinforce negative portrayals and stereotypes of minority groups. A White counselor offered another explanation during her interview as to why African American parents distrust the system: The rating scales we use to determine ADHD are ethnocentric. They are made to the White woman system, which is what elementary school teachers basically are. There is also a problem with a minority student going over to schools with a White majority ... they don't fit into the norm there and are seen as having ADHD because they don't fit into how those teachers would define the norm. A third explanation for distrust may stem from the past school experiences of African American parents. If parents had difficulty in school, distrust toward the system remained. According to one African American social worker: Most of those parents weren't comfortable being in school themselves. I have had parents essentially say, 'I just hated going to school. I felt really dumb. I was never very comfortable there.' They have a lot of negative connotations of school. It's really hard for them to get past that. A fourth explanation deals with the issue of control-forcing African American children to conform to a standard established by an oppressive social and racial hierarchy. A White nurse who has worked with the African American community stated: I think there's a negative perception in the African American community. It's viewed as a control aspect. Physical expressiveness is more accepted in the African American culture and exuberance is a desired characteristic and not something to squelch. Moms tell me that all the time-that it's [the ADHD diagnosis and stimulant treatment] taking the soul out [of African American children]. A social worker in an elementary school with an African American majority concurred saying, "African American parents feel that White teachers in schools are trying to control their children, trying to take their creativity ... spirit away from them." Coupled with this issue of control is a sense of disconnectedness. African American parents may perceive White educators as being unable to relate to their culture and, therefore, unable to relate to their children in the classroom. In discussing her own experiences, a White first-grade teacher, who seemed to have a relatively good rapport with African American parents, explained: I feel a lack of trust with the parents. I feel the parents trust me less as being a White educator here. Even though I think I receive more trust than many teachers, I am still White and they often don't think we can relate. A parent said, `It's you. She [the child/student] hasn't bonded with you.' This perceived "lack of bonding" and "taking the child's spirit away" further deepens African American parents' distrust of the system. The issue is complicated further by African Americans' perceptions that Whites do not understand their culture. A teacher also commented on her views of the differences between White and African American teachers with regard to the use of stimulant medication: White teachers are middle-class and support meds [medication] for African Americans and Whites. Even if they say it is an easy way out for parents, it seems they [White teachers] support meds [more than African American teachers] to help control classroom environment, too. In addition to this distrust of the school system, African American parents perceived a lack of cultural awareness and appropriate teaching strategies among educators in working with African American children. Further explanation of their view is offered in the next section. Lack of Cultural Awareness and Teaching Strategies Behavioral and emotional expressions are powerfully tied to cultural experiences. Thus, interpreting the behaviors exhibited by students requires that professionals know the underlying experiences that influence the student's reactions to situations. An African American principal of an elementary school offered: A big problem for White teachers is that they aren't part of that community. If you're not part of that community, you're missing a lot of information about what's happening with the family. I think they're struggling to sort out what to expect of the students and how that fits into the structure of what's happening in the school. This study did not intend to address the question of whether the White middle-class teachers lacked cultural awareness. However, the lack of cultural awareness of White teachers as perceived by African American parents was identified as a key issue. Another principal noted: An initial reaction [to a suggestion to test for ADHD] from African American parents would be, 'You're just picking on my kid because they're African American.' The parents fall back on that. Teachers and/or parents of African American children have different expectations and more tolerance (or appreciation) for higher activity levels of children. African American culture allows its members considerably greater freedom to assert and express themselves, whereas the White culture values the ability of individuals to rein in their impulses. Granat (1995) confirmed that minority parents often believe that Ritalin and other drugs are being forced on their children to make them conform to the more reserved behavior expected by White teachers. A medical practitioner who has worked extensively with African American families stated: I always had the gut sense that they [African Americans] accepted much more activity and they expect more activity and voice response and less of the compulsively well-behaved kids. In White families, you're expected to sit and listen and you attend. You don't get into things that aren't yours. It's not necessarily the expectations of African Americans, but to be very open and busy and active and boisterous and robust is accepted. I have also noticed, over the years, that when we do intervene with medical systems, they [African American parents] aren't necessarily pleased with the results because it really changes their child a great deal, things they valued in that child were gone. They see it as a loss of spirit. African American parents and/or teachers of African American children often expressed the opinion that the misbehavior or inattention is primarily a result of a relationship problem with the teacher or parent. An African American principal offered this insight: "There is a reluctance on the part of some professionals to deal directly with African American parents. I don't know if that's the result of racism or the result of misunderstanding or miscommunication." Differing methods of communication may be at the crux of the misunderstandings between school teachers and officials and medical professionals and African American parents. Kochman's study (1983) explored the sometimes conflicting "styles" or cultural practices between White and African Americans. In one portion of the study, Kochman looked at how White and African Americans interpret "argument" and "discussion." Kochman's study revealed that Whites tended to see dialogue as "argument" whereas African Americans saw dialogue as either "argument" or "discussion." Further, Whites in the study perceived a disagreement or argumentative mode as dysfunctional, and concluded that reason and emotion work against each other. Conversely, Kochman found that African Americans perceived "discussions" as being a honest and direct clearing of the air. White middle-class teachers often find the directness of African American parents discomforting. White teachers just are not used to that directness. In the words of a participant, "They [African American parents] really don't beat around the bush. More of the African American parents get right to the point, 'What are you going to do for my kid? What's going to happen? Why is this a problem?.' Certainly, not every African American parent has the same reaction, but African Americans in this lower SES community are more apt to be very direct or blunt (Boykin, 1994; Shade, Kelley, & Oberg, 1997). African Americans' responses tend to be of one of two reactions. According to a teacher, African Americans respond with either, "This is your problem in school. You handle it," or "What's the problem? We need to get to it and there will be some repercussion at home." The differences in communication between African American parents and many White middleclass teachers also result in those teachers feeling intimidated by African American parents. One teacher observed, "I think a lot of teachers are really afraid of African American parents. They're afraid parents are going to be upset [when suggesting the child should be tested for ADHD]." Similarly, the teacher related how an area education consultancy agency (AECA) works with, or fails to work with, African American parents. He said, "The [AECA] has prided itself on never having a lawsuit. I say that's because they back down." However, with positive relationships, trust can be built. As one White teacher who seems to relate well with the parents and families of her African American students implied during her interview, "With my parents, mostly the reaction [to a behavioral or learning problem] is, `We don't really know what to do. You tell us and we'll do it."' Having taken the time to develop a rapport with the families of her students, in this teacher's experience, African American parents have been somewhat less defensive when faced with the possibility that their child may have a behavioral disorder or learning disability like ADHD (even though still hesitant to seek medical advice too quickly). These parents were also more willing to seek professional medical advice and more receptive to discussions concerning treatment and alternatives to medication. Challenging the authority of school officials may satisfy the need to gain power for those cultural groups who feel oppressed or believe they live in a powerless environment. In 1999, ABC Nightline aired a special report on the oppressiveness of some of or nation's schools: "We call it the racism pills. This is a pervasive feeling in many minority communities because schools have not created an environment that is hospitable to our children." Seemingly, African American parents would agree with Breggin's (2000) statement: "They are not 'disordered' at all, but manifestations of conflict between children and adults. It is the diagnostic slight of hand blaming the source of the conflict on the child" (p. 117). Social Stigma and Addiction Concerns The third theme emerging from these interviews was that African American parents resist the identification process because of a perceived social stigma in the African American community against one's child being labeled "crazy" and taking "drugs." The terms "stigma, "crazy," and "drugs" came up repeatedly during the interviews. When asked to clarify what they meant by "stigma," the participants' responses were centered on issues of being labeled-stamped with a social mark of shame and a sign of disease. For example, an African American teacher stated: The stigma comes in that your child needs something else to make them behave-not just the stigma that they're crazy. In some cases when you recommend that the child be evaluated, they say 'My child is not crazy because my child can . . . ' and they [parents] list all the responsible things that the child can do. Goffman (1963) proposed that labels create negative effects on the labeled person and his/her family and/or peers. This perception and response is a marked contrast with findings from Davison's study (2001). In Davison's study of White parents of children labeled ADHD, the issue of social stigma simply never emerged. Furthermore, there was a sense of relief among those parents when the root of their child's attention and hyperactivity problem was presented as being a biological condition. White parents in that study expressed little, if any, concern about drug addiction as a result of medical treatment for their child's ADHD. If any mention of drug addiction arose, in that study, the use of Ritalin or methylphenidate was seen more as a preventative measure against any future drug abuse problems. Conversely, African American parents in Davison (2001) study were very concerned that using stimulant medication to treat their child's behavioral problems would encourage later drug use and possibly lead to abuse and addiction. A White nurse who works extensively with this population noted, "African American parents always indicate a fear that using Ritalin will lead to drug abuse later on." This is not to say that problems of drug abuse do not exist in the White middle-class community; it is to say that these African American parents are more aware of the potential misuse of Ritalin. A White medical practitioner noted, "It is a rare African American parent in this community who has not observed or heard of the abuse of drugs and/or Ritalin." A common expression of this concern came from a White nurse who works with African American parents: These parents are very 'street smart' and are committed to keeping their kids away from substance abuse within the community. They don't want their kids to have anything to do with Ritalin. They don't want their kids introduced to drugs. When asking participants if parents view the use of Ritalin as a therapeutic drug, not just as a stimulant narcotic, another White nurse responded, The concept of drugs as therapeutic and drugs as an abuse method doesn't come into that. It's all one issue. They believe that if you introduce the kids to them [drugs], they're going to think they can use other drugs. It is definitely more of a concern within the African American community [than in the middle-class White community in this area]. Echoing the observations of this nurse, an African American school administrator mentioned that parents often question the kind of message-or mixed message-they are sending to their child about drugs and drug abuse when, in effect, they are putting their child on drugs (i.e., Ritalin). Although he was referring to grandparents who are rearing their grandchildren in particular, he explained, "They ask what kind of message are you sending the child when you say they can't control this behavior, only a drug can help control their behavior." Political Pressures In this district, there is political pressure on those who work in schools with a majority African American population not to encourage the process of labeling children with disabilities. As mentioned earlier, the State Department of Education had put this district on warning notice for overrepresentation of minorities in special education programs in the early- and mid-1990s. Subsequently, most participants noted that this has impacted the amount of encouragement teachers give to the ADHD diagnosis. In the words of one White teacher: I know specifically the [AECA] people have been told that they have too high a percentage of LD [learning disability] children in their classrooms. Out of trying to be cautious, because in the past there has been too much identification, they've [district administration] put the brakes on, so it's a harder and longer process to get these kids help because someone, the big man upstairs or whatever, said 'There are too many kids being identified here.' However, in the fear of that happening, some kids aren't getting their needs met. In this already highly political debate, a child-centered educator posed another issue: We definitely make the distinction between ADD being a medical diagnosis and not an education diagnosis, by definition of the Department of Education. Schools say, 'We can't program for that child because ADD is a medical diagnosis, not educational.' Our response is that it doesn't matter. The problem is that this child has a problem in the class. Go ahead and write a 501 plan for him. This scenario raises another very important question: Could the ADHD label absolve teacher/schools from the hassles of documentation and not addressing more serious learning challenges of some students? It is not to say this would motivate teachers to recommend testing for ADHD based upon personal convenience. However, it does raise concern about the ease by which a student could potentially be identified as needing a stimulant medication versus testing for other learning disabilities or alternative forms of treatment in those situations with parents who are more receptive to the suggestion of medicinal treatment. The political ramifications need further study because this seems to be a more complex issue than could be addressed in this inquiry. However, if minorities are overrepresented in special education (disability) programs, then would it not stand to reason that minorities would have also been overrepresented in ADHD diagnosises? What makes the difference? A possible explanation could be fears of being reprimanded again by the state governmental agencies or that parents need to be more involved and agreeable to the ADHD diagnosis for it to happen. CONCLUSION We must remain vigilant in scrutinizing placement practices to prevent the identification of any child for inappropriate services, such as over diagnosing for ADHD. We must be equally on guard to prevent the denial of access to services for children that qualify for and are likely to benefit from those services, such as testing for ADHD (Kochman, 1998). Regardless of whether ADHD biologically exists or if it exists only in the minds of those who believe it exists, what is most important is that children receive appropriate support for their learning needs. Breggin (2000) stated: African American leaders have voiced the opinion that the urban school system is the ultimate societal tool for enforcing racist views. They have proposed that by providing inadequate education to inner-city children, it keeps them 'in their place' at the bottom of American society. (p. 218) The parents in this study have heard this message from their leaders and can perceive its manifestation in their communities, especially by those who recommend that their children use stimulant medication to control behavior and/or maintain attention in the classroom. Education and medical professionals must learn to recognize the difference between behavior disorders and cultural differences so that culturally diverse students' needs are addressed through appreciation and understanding of their cultural view. It is imperative that educators work diligently to improve education for African American children and to restore and foster positive relationships with their parents and families. In this way, educators and medical professionals can hope to earn the trust of the African American community. In doing this, the professionals and parents can truly work together in the best interest of these children. It is dangerous for educators to assume that African American parents want less for their children than other parents. African American parents are as concerned about education quality and teacher quality as White parents. Despite any perceptions that White teachers do not understand African American culture, three-fourths of African American parents state that school districts should hire the best teachers and administrators, regardless of race (Hentoff, 1998). This recommendation indicates African American parents are willing to work with quality teachers who show expertise and respect for their children and the community. Nevertheless, it is up to the educators-teachers, principals, administrators, and personnel-to take the first step in building trusting relationships. Of course, positive relationships among all stakeholders are in the best interest of all children. Given the findings just presented, two general recommendations are in order. First, schools should educate African American families and all families about ADHD, particularly diagnosis and intervention. This is an opportunity to educate families so they can make informed decisions for the well-being of their children, and work with school personnel in meeting their children's special needs. Secondly, school personnel and community professionals must receive formal, ongoing training in how to work effectively with African American populations and other culturally diverse groups. Such preparation includes understanding how culture impacts behaviors and learning. Such training includes understanding that stereotypes and biases held by educators seldom work in favor of diverse students. 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