Abstract
As the prevalence of autism spectrum disorder (ASD) continues to rise, racial disparities remain in age of diagnosis and initiation of treatment. Therefore, occupational therapy practitioners should examine cultural perceptions related to disparities in ASD diagnosis. This article investigates the role that practitioners may play in this disparity by asking, “Are occupational therapy practitioners contributing to the late diagnosis of children with ASD who are members of particular racial or ethnic groups?” Correlations among practitioners’ detection of symptoms, parents’ perceptions, and evaluator influences are investigated. By examining these factors, practitioners may gain better insight into these disparities and therefore provide more effective advocacy regarding early diagnosis and treatment access.
A vast literature exists on racial and cultural disparities in the diagnosis and initiation of treatment of autism spectrum disorder (ASD). Such research suggests that many aspects of race and culture influence these factors (Angell & Solomon, 2014; Becerra et al., 2014; Ennis-Cole, Durodoye, & Harris, 2013; Fountain, King, & Bearman, 2011; Zuckerman et al., 2013). This article aims to identify how occupational therapy practitioners can play a vital role in the early detection of ASD in racial or ethnic groups and provide appropriate services for members of these groups who have ASD. This issue has great implications for and impact on the field of occupational therapy.
The American Occupational Therapy Association (AOTA; 2010) promotes evidence-based practice for clinicians delivering services to children and families. The organization also recommends that interventions involve a family-centered approach and recognizes that successful outcomes of ASD treatment correlate with services beginning during the early years of a child’s life. Hence, occupational therapy services and interventions are the most sought-after treatment by parents with children with ASD (Interactive Autism Network, 2011). Occupational therapy’s appeal for these parents results from its services and interventions aligning well with proven treatment strategies to address the symptoms of ASD (Case-Smith & Arbesman, 2008). Therefore, occupational therapy fulfills a major role in the diagnosis and treatment of ASD.
Despite not being diagnosticians, occupational therapy practitioners, as early intervention providers, play an important role in identifying ASD in children. Because practitioners provide direct care and support to families with concerns about their children’s atypical behavior, early intervention often occurs before a child’s diagnosis of ASD. During this intervention, parents may ask the practitioner to share his or her expert opinion about whether he or she thinks the child has autism. In that moment, the practitioner has a choice. He or she may have a gut instinct that the child has autism but refrain from stating so and simply explain the occupational therapy scope of practice. Alternatively, the practitioner may validate the parents’ concerns and support them in the steps needed to initiate a diagnosis.
Although many occupational therapy practitioners may express discomfort in diagnosing the disorder, or even broaching the subject, such apprehension hinders the possibility of obtaining a timely diagnosis. Therefore, practitioners must identify methods to appropriately acknowledge their expertise in this area without compromising the occupational therapy scope of practice. This topic is important to discuss in the field because late diagnosis impedes provision of services that may enhance function and quality of life for the child and his or her family.
Occupational Therapy’s Role in Timing of Diagnosis and Treatment of Autism Spectrum Disorder
Occupational therapy must acknowledge the significance of early detection to fully address occupational therapy’s role in the timing of the ASD diagnosis. Early detection is necessary to initiate required intervention services (Ennis-Cole et al., 2013). The Centers for Disease Control and Prevention (CDC) recommends that ASD be diagnosed by the age of 2 yr (Wingate et al., 2014). Nevertheless, most children are not diagnosed until after age 4 yr, and the age of diagnosis is even older among racial and ethnic groups (Wingate et al., 2014). These data spur concern because
Early diagnosis can enhance outcomes by ameliorating some of the impairments correlated with ASD (Peters-Scheffer, Didden, Korzilius, & Matson, 2012);
Over time, treatment can aid in the regulation of behavior patterns associated with ASD; and
Early, accurate diagnosis of ASD enables families to learn about their child’s developmental challenges, cope with caregiving demands, seek appropriate services, and obtain counseling (Shattuck et al., 2009).
To provide a family-centered approach, such as the one just mentioned, various disciplines must be involved. The occupational therapy practitioner may be one of a few service providers or the only one to the family. In either case, the practitioner should initiate the diagnostic process. Without this catalyst, other needed services may be postponed.
Racial and Societal Disparities
Despite the knowledge regarding early detection, disparities in the diagnosis and treatment of ASD prevail among racial or ethnic minorities (Angell & Solomon, 2014; Fountain et al., 2011; Mandell et al., 2009) as well as among people of low socioeconomic status (SES). In March 2014, the CDC issued a report on the prevalence of ASD in the United States by assessing the Autism and Developmental Disabilities Monitoring Network data pool (Wingate et al., 2014). The results revealed that 1 out of 68 children had a diagnosis of ASD. The study also reported disparities in the rate of diagnosis on the basis of race. White children received a diagnosis 20 times more often than African-Americans and 50 times more than their Hispanic counterparts (Wingate et al., 2014). This study reported similar findings to previous research, but unlike the others, it exposed one important fact. Etiological data did not support these disparities, pointing toward a societal cause (Wingate et al., 2014).
Societal causes, such as SES, may influence the diagnosis of ASD. For example, Durkin et al.’s (2010) study on 3,680 people with ASD investigated the influence of SES on ASD diagnosis. They identified a positive association between SES and ASD diagnosis: As SES increased, so did the rate of ASD diagnosis. Another study revealed that people with a lower SES were diagnosed with ASD at a later age compared with those with a higher SES (Fountain et al., 2011). These studies indicate that occupational therapy practitioners must be aware of the role of race and SES in ASD diagnosis disparity.
Parent Perceptions and Symptom Detection
It is important for occupational therapy practitioners to explore parent perceptions because they play a huge role in symptom detection and acknowledgment. For example, the African-American culture views community and church as important aspects of its survival. African-Americans may look to members of their community rather than to health care professionals when concerns arise (Sue & Sue, 2013). Some people of Hispanic descent use nontraditional treatments instead of seeking out medical professionals. Although this information is helpful to know, practitioners must avoid using it to form negative or inaccurate assumptions about their clients (Ennis-Cole et al., 2013). Racial and ethnic minorities in America have histories riddled with discrimination, economic marginalization, and various forms of unfair treatment (Sue & Sue, 2013). Therefore, trust in the health care system remains fractured. Practitioners must consider the perception of parents to build a rapport and a clinical relationship.
Because evidence on the connection between parental perceptions and culture is limited, cultural inferences, based on assumptions, are frequently made about such perceptions. Yet, this limited empirical data can provide crucial information to occupational therapy practitioners, allowing them to gain an understanding of parental perceptions and culture and therefore enhance the success of their services for racial and ethnic minority families. Mandell et al. (2009) and Rosenberg, Landa, Law, Stuart, and Law (2011) provided some insight about race and ethnicity related to parental perceptions and symptom detection of ASD. For example, Rosenberg et al. reported that the age of African-American and Hispanic children at which parents expressed concern about ASD was 1.56 to 1.94 mo later than for White non-Hispanics. Mandell et al. reported that Black (including African-American), Hispanic, and other non-White parents are less likely to predict an ASD diagnosis for their children compared with Whites. These outcomes provide evidence that parent perception influences ASD diagnosis.
The investigation of parent perceptions should not stop at culture. Parents’ level of education and age are additional parental factors. Children with more educated parents or mothers receive a diagnosis earlier, particularly for racial and ethnic groups (Fountain et al., 2011; Mandell et al., 2009; Mazurek et al., 2014). In addition, younger maternal age is significantly associated with older ages of ASD diagnosis (Shattuck et al., 2009). For people with low levels of education, cultural beliefs and perspectives may guide decision making. Parents may view delays as typical development or as temporary (Ennis-Cole et al., 2013). They may also miss subtle signs of ASD as a result of a lack of knowledge.
Practitioner’s Role in Disparity
Further exploration into the role of occupational therapy practitioners in diagnosing and treating ASD leads the discussion to a pivotal area. Similar to parental perceptions, parent–practitioner communication and the relationship between these two stakeholders have important implications. Parents seeking medical assistance rely on health care professionals to inform them about conditions and diagnoses, viewing them as experts. The assessment, screening, and treatment process must include parent interview. Although parent report may reveal beneficial information, it may also cause a major hindrance. Parents’ shared areas of concern may be different from what a practitioner seeks to identify as a symptom. Ultimately, a misfit may occur.
Angell and Solomon’s (2014) research exposed a disconnection between African-American parent report and what evaluators documented in their records. Misinterpretation of parents’ concerns led to late diagnosis, misdiagnosis, and inappropriate treatment planning for service delivery. Parents shared perceptions that evaluators did not view them as knowledgeable. Parents also expressed upset in the evaluators’ inaccurate translations of their statements. If such families were to receive occupational therapy services, the intervention plan could be significantly compromised because of inaccurate reports.
Medical professionals evaluating children suspected of ASD are in a challenging position. Therefore, evaluators’ experiences also need to be examined. Primary care physicians (PCPs) report difficulty in screening for ASD for certain racial and ethnic groups. For example, they perceive Latino parents as having a lack of knowledge of the disorder (Zuckerman et al., 2013). Therefore, screening presents challenges, especially with language barriers. Despite many PCPs serving large Spanish-speaking populations, PCPs often do not offer screenings in Spanish. When referrals are formalized, access to specialists is limited. Hence, Zuckerman et al. (2013) and Angell and Solomon (2014) were able to uncover a splintered and often unsuccessful alliance between racial or ethnic minority parents and health care providers.
Role of Cultural Competency
Occupational therapy practitioners can enhance the quality of their services by taking into account the implications of race and culture. Occupational therapy intervention must involve culturally competent treatment interventions, advocacy regarding early detection and diagnosis, and appropriate access to screenings and services for families. The Occupational Therapy Practice Framework: Domain and Process (3rd ed.; AOTA, 2014) recognizes the importance of both behavioral norms and cultural perspectives for evaluating and treating people with ASD. However, concerns exist regarding occupational therapy practitioners’ adherence to these principles in the treatment process of ASD. Caron, Schaaf, Benevides, and Gal (2012) identified a need for further research on culture and parent perspectives in identifying ASD. Practitioners must be aware of cultural influences on the interpretations of behavioral manifestations such as sensory processing. The assessment and intervention process must include cultural and environmental factors.
To initiate this process, occupational therapy practitioners must first have knowledge of cultural competency. Suarez-Balcazar et al. (2009) acknowledged the need for both formal and informal training in the area of cultural competency. Such training allows practitioners to feel more comfortable in addressing the specific needs of diverse clients. Being skilled in cultural competency can assist practitioners in the identification of unique characteristics correlated to a possible diagnosis of ASD. Specifically, for racial or ethnic minority families, or those with low SES, occupational therapy practitioners need to engage advocacy on behalf of their clients.
Conclusion
Occupational therapy practitioners often detect symptoms of ASD, resulting in making the appropriate referrals. As a profession, we need awareness of the various factors, including cultural differences, that may contribute to a delayed or inaccurate diagnosis. Practitioners must help parents define and effectively explain their concerns. Investigating cultural norms and beliefs can assist practitioners in identifying cultural biases and providing possible strategies for effective communication (Carter et al., 2005).
When practitioners work with a racial or ethnic minority family who has received a formal diagnosis of ASD, effective communication leads to effective intervention. Before evaluation or treatment planning begins, practitioners must question the parents regarding their perceptions and feelings about ASD (Ennis-Cole et al., 2013). Practitioners can use any positive or negative feelings revealed. Specifically, they can use negative feelings to identify needed referrals to other professions and to develop parent education components to their intervention. The process must also include identifying how the parents defined the causes, symptoms before the diagnosis, and their fears. In addition, parents’ perception of the type of treatment intervention required by their child will guide intervention planning. Practitioners need to also identify available resources. Families require support services that educate them on their rights and responsibilities (Ennis-Cole et al., 2013).
A review of the literature on health disparities in the diagnosis of ASD reveals a gap in the examination of occupational therapy’s role. This gap poses a unique opportunity for researchers. Parent perspectives and symptom detection, as they relate to race and ethnicity, necessitate investigation by occupational therapy practitioners. The quality of occupational therapy intervention for ASD treatment demands research on cultural competency among practitioners. Last, because other disciplines produce the majority of the literature in this area, identifying opportunities for interdisciplinary research opportunities can support emerging areas of practice.
Although the information presented here is cause for alarm, it compels action. Occupational therapy practitioners already possess the answers. The foundation of the occupational therapy field models the care necessary for families receiving treatment for ASD. The recent revision of occupational therapy’s practice framework (AOTA, 2014) can provide additional structure in addressing the issue of disparity between culture and health care. Occupational therapy cannot neglect the impact of this disparity.
Footnotes
Acknowledgments
I extend a special thanks to Elizabeth Higgins for her contribution to the literature search as a student in the Programs in Occupational Therapy at the University of the Sciences in Philadelphia. To Phyllis Blumberg and Adele Breen-Franklin, thank you for your peer reviews.