J. T. Fuller | October 22, 2021
A typical child has a parent, a teacher, and a doctor in their life from an early age. Each brings with them a set of cultural norms, expectations, and biases that are often determinative of whether a child will receive appropriate treatment, particularly when related to mental health. Various cultural factors interplay resulting in the chronic underdiagnosis of Attention Deficit Hyperactivity Disorder (ADHD) in minority children. This review explores the cultural barriers preventing effective care, by affecting parent beliefs, teacher bias, or diagnostic cultural insensitivity.
Attention Deficit Hyperactivity Disorder (ADHD) is a common neurodevelopmental disorder characterized by developmentally inappropriate inattention, hyperactivity/impulsivity, or both (DuPaul & Jimerson, 2014; Slobodin & Masalha, 2020). Rates of diagnosis for minority populations are concerningly low, and researchers have endeavored to explore possible reasons why (Slobodin & Masalha, 2020). This review evaluates current literature on cultural barriers to diagnosis and intervention to better understand trends and themes between ADHD and culture.
The diagnostic standard for ADHD varies across the world, although the foundational concept is similar. The standards provided by the DSM-5 and ICD-11 are the most widely used diagnostic standards. Both the DSM-5 and ICD-11 classify ADHD as a neurodevelopmental disorder. ADHD is recognized as a pattern of inattentive, hyperactive, and/or impulsive behaviors impacting the function and/or quality of life, starting before age 12 and found across more than one setting (ADHD Diagnosis | ADHD Institute, 2021). The DSM-5 requires a set number of manifestations: for those under 18, six are required, whereas only five manifestations are required for adults. The ICD-11 does not specify a specific number of required manifestations.
Minority children are less likely to be diagnosed early, if at all (Schmengler et al., 2021). Historically, boys were more likely to receive an ADHD diagnosis because they tend to be more disruptive in school, as compared to girls, who were more likely to be inattentive but not disruptive (Smith, 2017). An ADHD diagnosis is based largely on subjective data, and there is a high risk of bias accordingly (Slobodin & Masalha, 2020). Common comorbidities include autism spectrum disorder (ASD) (Kim et al., 2020), oppositional defiance disorder (ODD), conduct disorder (CD), learning disabilities (LDs), mood disorders, anxiety disorders, personality disorders (PDs), substance use disorders (SUDs), trauma (Katzman et al., 2017), and post-traumatic stress syndrome (PTSD) (Slobodin & Masalha, 2020). ADHD has a strong genetic neurobiological component (Drechsler et al., 2020). Risk factors for ADHD include environmental factors, as well as bias exposure (cultural, linguistic, and/or racial) (Slobodin & Masalha, 2020). Although there is not yet a universal definition of ADHD, Bauermeister et al. (2010) found cross-cultural consistencies in how the underlying dimensions of ADHD manifest.
Childhood ADHD symptoms have been linked to many problems as the child advances in age, and symptoms often persist into adulthood (Ornoy & Spivak, 2019). A child with ADHD is more likely to underachieve academically, repeat a grade, be referred for special education services, be suspended, and/or drop out of school as compared to non-disabled peers (DuPaul & Jimerson, 2014). In addition to comorbidities like LDs, ASD, Tourette’s disorder, obsessive-compulsive disorder (OCD), developmental coordination disorder (DCD), ODD, CD, depression, and anxiety, in adolescence, ADHD increases the risk of SUDs, problematic media use, obesity in girls, dysregulated eating, enuresis, and sleep disorders. ADHD in children is frequently comorbid with neurological conditions including migraines, epilepsy, LDs, and intellectual dysfunction (Drechsler et al., 2020). Young adults with ADHD are less likely to join the labor market; if they do, their earnings are expected to be 30% lower, and they are more likely to need social assistance (Fletcher, 2013).
Once adulthood is reached, 80% of adults with ADHD can be expected to also have psychiatric disorders such as mood and anxiety disorders, SUDs, and/or PDs (Katzman et al., 2017). In addition to an increased risk of psychiatric disorders, adult ADHD is associated with an increase in accidents, higher medical resource demand, antisocial behavior (Asherson et al., 2012), lower educational attainment, misconduct, and imprisonment (Ornoy & Spivak, 2019). Without treatment, individuals with ADHD have poorer outcomes across many facets of life, including academic performance, behavioral challenges, driving problems, employment challenges, drug use, obesity, service use, self-esteem, and social functioning. Treatment decreases the long-term negative impact of ADHD on all areas of life as compared to untreated ADHD but does not yet facilitate functioning as well as non-disabled peers (Shaw et al., 2012). Orony and Spivak (2019) estimate the societal cost per person with ADHD is $290,000 as compared to the optimal treatment cost of $42,000 to quantify the cost-benefit for treatment.
Despite the increasing acceptance of ADHD as a disorder and evidence of the neurobiological basis of ADHD, ethnic and cultural factors remain barriers to diagnosis and intervention in minority children. In some ethnic minority communities, parents risk stigmatization based on the child’s disorder and may avoid seeking care because of potential repercussions. For example, in Latino families, the parents are typically blamed for a child’s misbehavior rather than having the neurobiological basis for the behavior recognized (Schmengler et al., 2021). The identification of children in need of intervention at school is both under and overinclusive. There are challenges with rating scales provided to teachers and parents because the scales may not be culturally appropriate and the evaluation from either is rooted in the individual’s cultural identity. Even if the child is referred for diagnosis, evaluation bias may delay or prevent diagnosis and treatment.
Presentation and Diagnosis
The prevalence rate of ADHD in children varies significantly from study to study, with estimates ranging from 2% to 17 % of children worldwide, and parent reports reflect 11% of children in the US have been diagnosed (DuPaul & Jimerson, 2014; Elder, 2010; Slobodin & Masalha, 2020). However, the literature is filled with studies demonstrating minority children are less likely to receive a diagnosis than white children (Haack et al., 2018; Paidipati et al., 2017). The prevalence rate in adults is estimated to be 2.8% (Drechsler et al., 2020). ADHD symptoms include a combination of some or all of the following: irritability; fidgeting, agitation, hyperactivity, nervousness and/or worry; difficulty with attention, concentration, focus, and/or memory; impaired social, occupational, or recreational functioning; psychomotor agitation; task completion difficulty; distractibility, and/or excessive talking (Katzman et al., 2017). Subclinical ADHD is common, estimated to have a 10% prevalence rate, and children with subthreshold symptoms referred for evaluation show similar deficits and symptoms as children with clinical ADHD (Bauermeister et al., 2010; Drechsler et al., 2020).
Guidelines for ADHD diagnosis in the US prompt the clinician to begin the evaluation process once a parent reports academic or behavioral problems and the child shows symptoms of ADHD (ADHD Treatment Recommendations | CDC, 2020). The diagnosis for ADHD is done in a clinical setting and consists of an interview with the parent, discussing the child’s developmental, social and educational history. The child’s behavioral difficulty in multiple settings is assessed, and the child is interviewed. A child’s self-report is considered less reliable; instead, observation and teacher input is relied upon. Parent and teacher rating scales are typically included in the evaluation (DuPaul et al., 2016). The data and diagnostic process are subjective and prone to bias; however, objective testing is not part of current diagnostic guidelines (Drechsler et al., 2020). Once a child is diagnosed with ADHD in the US, treatments typically fall into three categories: medication, parent training, and behavior intervention and are selected based on age and symptoms (ADHD Treatment Recommendations | CDC, 2020).
In other countries, diagnosis and treatment vary significantly. Canada takes a holistic and measured approach to diagnosis and treatment. A Canadian doctor described the treatment plan for three different hyperactive patients: one received a traditional prescription for Ritalin, another began the process of exploring food allergies, and the third benefitted most from an increased structure in social settings. Great Britain is divided in how ADHD is treated: in England, there is a cultural aversion to drug therapy for children; psychosocial stress is considered the basis for psychiatric disorders and a flexible approach is taken with ADHD. In contrast, Scottish guidelines recommend stimulants as the initial treatment. Scandanavia is even further divided, with extreme variation in this region. Iceland has the highest per capita Ritalin use according to one study, as compared to Finland’s perspective that ADHD is merely another “everyday educational challenge.” (Smith, 2017, p. 778). Sweden’s scientific community is sharply divided, a disagreement stemming from questionable research by the country’s leading ADHD expert and possibly Scientology-based critics of this research. Variation may relate to drug availability and non-drug treatment options, medical professional training, or diagnostic procedure discrepancies (Smith, 2017).
Several barriers are in place that may delay or prevent diagnosis for culturally diverse children. For a child to be diagnosed with ADHD, a parent has to be aware of a problem, articulate the problem to a doctor, and the doctor has to agree there is a problem. Culturally diverse families face increased community pressure, which may not be in line with guidance from the medical community or best practices. Culture shapes a parent’s perception of behavior and influences treatment-seeking behavior. Teacher motivation for identifying children is not always in line with the best interests of the child, but rather instead, teacher control of the classroom. Doctors rely on rating scales that may not align with individual cultural expectations, and the assessment is very subjective and subject to bias anchored in the teacher/doctor’s perception, which is strongly related to culture.
If a parent does not believe their child has a problem, this will be a huge barrier to diagnosis. In general, there is limited consensus on the range of behaviors that is normal and abnormal in children as these behaviors relate to ADHD, so it is no surprise when parental beliefs also vary. Parental perceptions of the legitimacy of ADHD stem from a basic level of knowledge, belief about causes, and perception, which is influenced by culture (Paidipati et al., 2017). Some ethnic minority families fear community stigmatization and firmly maintain their points of view on a child’s behavioral difficulties despite evidence to the contrary (Leijten et al., 2016; Slobodin & Masalha, 2020). Siegel et al. (2016) noted non-white families have different expectations for their children and view behavior as a non-medical problem. Parents control seeking and receiving a diagnosis, which is influenced by the parent’s ADHD ideation, treatment preferences, and the parent’s difficulty with the child (Paidipati et al., 2017). Further impeding diagnosis is a lack of knowledge and use of services, which may be under-supportive to minorities and lack effective communication (Paidipati et al., 2017; Valenzuela et al., 2017).
Teachers are in the optimal position to see a child as compared to her peers and to be familiar with developmental behavior appropriateness. However, teachers are most likely to recognize a problem only when a child is disruptive or not meeting achievement standards, and only voice a concern when the child is problematic for the teacher (Takeda et al., 2016). Rating scales are helpful to the evaluator because symptoms may not be apparent in the clinical setting (DuPaul et al., 2016). However, a teacher’s ratings can be biased in several different ways. First, in the classroom setting, younger children are identified much more frequently than their older classmates (Elder, 2010). This is problematic because each child should be compared to the norm for that child’s age in months--behaviors are evaluated for age appropriateness, not by grade. Compounding this problem, we see a disconnect between parents and teachers that can be predicted by demographic variables, resulting in less consistency in reports between teachers and ethnic minority families (Takeda et al., 2016). Some have suggested there is a difference in the actual behavior displayed, which is influenced by culture, or perhaps the teacher’s perception of the behavior is biased because of her own cultural ideation of normal and abnormal (de Ramírez & Shapiro, 2005). Self-reports are not considered as reliable for the diagnosis of ADHD (Drechsler et al., 2020).
There is tension in the literature around minority overrepresentation in special education (SPED). Around half of the students with ADHD are expected to be included in special education eventually, typically because of behavior or LDs (Hosterman et al., 2008). Cooc (2017) discusses various studies showing minority students were more likely to be referred for a SPED evaluation, but this often led to a restrictive and stigmatic environment for those children, rather than useful intervention.
An interesting dichotomy exists between a tendency towards minority SPED overidentification based on teacher reports and a trend of minority underdiagnosis and treatment (Slobodin & Masalha, 2020). Clinicians often rely on rating scales to determine whether the child meets the criteria for an ADHD diagnosis. This is problematic because rating scales are typically normed to the white middle class (de Ramírez & Shapiro, 2005) and it is questionable whether rating scales are used in a culturally sensitive way (Valenzuela et al., 2017). On the one hand, Valenzuela et al. (2017) note African American children score higher on ADHD rating scales so perhaps there are false positives, but Fadus et al. (2019) discuss how African American (and Latino) children have a lower chance of receiving an ADHD diagnosis than white children. On the other hand, minority children are more likely to be diagnosed with CD or ODD, and Fadus et al. (2019) suggest this is best explained as underdiagnosis of ADHD when indicated, and not that white children are overdiagnosed. Further, Kirova et al. (2019) discussed the high prevalence of subclinical ADHD resulting in significant impairment nonetheless suggests underdiagnosis.
Conclusion
Culturally diverse students are at a significant disadvantage in receiving a diagnosis of ADHD when compared to their white peers, which results in a disproportionate impact on already disadvantaged students. Stigma and cultural perceptions of behavior are a major barrier for the child to receive a diagnosis, often resulting in a lack of care-seeking behavior. Teachers should be in a position to identify and advocate for a child but competing motivations result in the overinclusion of minority students in SPED with underproducing results, often to the detriment of the student. Minority children are more likely to be diagnosed with a related conduct disorder rather than ADHD, which results in less access to treatments or simply not being diagnosed at all. This is problematic not only for the individual but also for society bearing the cost of underdiagnosis.
This review has several important limitations. The cause of ADHD is not fully understood or universally accepted. The inherent subjectivity of an ADHD diagnosis makes true comparisons questionable. ADHD remains most apparent when behaviors are externalized, rather than internalized, and hyperactive rather than inattentive. Girls are less likely to show externalized or hyperactive behaviors and are able to mask well, which suggests underinclusion. In the course of discussing “culture,” various proxies were used, which may not be an accurate representation of actual cultural factors.
A culturally sensitive approach to destigmatization and education would be beneficial to implement. Community-supported education would help to facilitate destigmatization by bringing information not only to parents but also to other members of the community who would then be in a better position to be supportive. As long as there is a perception that the behaviors can be blamed on something rather than as a medical condition, parents will continue to delay seeking a diagnosis and children will struggle to have their disability acknowledged. Classroom discussion, normalization, and destigmatization around common disorders including ADHD may empower children to self-advocate and provide more reliable self-insight. Teachers are the front line in informing parents of challenges their children face in learning, and professional development opportunities focusing on culturally sensitive identification and educating diverse parents about challenges related to ADHD would be beneficial.
Research is needed with a specific focus on inattentive ADHD as well as ADHD in female populations. Additional research on disparities within justice-involved youth and prison populations would be helpful to better understand the disparate impact of underdiagnosis of ADHD within minority populations. Methodologies for destigmatizing ADHD within diverse populations should be developed and reviewed.
In the future, objective diagnostics should become the primary method of diagnosis. Several neuroimaging techniques show promise for objective diagnostics and should be made accessible to all school-age students. This would greatly reduce or eliminate the subjectivity of an ADHD diagnosis, and largely eliminate the cultural barriers to diagnosis discussed. Further, general acceptance of imaging results would help to reduce the stigmatization of ADHD.
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