HJAR Mar/Apr 2025

AUTISM CARE 20 MAR / APR 2025 I  HEALTHCARE JOURNAL OF ARKANSAS The Role of Culture in the Presentation and Perception of ASD Although autism spectrum disorder (ASD) occurs across cultures, the recogni- tion of ASD is not uniform across all cul- tures. For example, in the U.S., Black chil- dren are often diagnosed withASD at much older ages than other populations, and Black autistic children are more likely to be identified with co-occurring intellectual dis- ability than autistic children who areWhite or Hispanic. 1,2 Taken together, these findings suggest that Black children need to pres- ent with more severe clinical presentations to receive a diagnosis of ASD. A delayed or missed ASD diagnosis often leads to neg- ative educational and health outcomes, including poor academic achievement, high levels of anxiety, depression, and low self- esteem. 3 Thus, the early and accurate iden- tification of ASD is crucial because it pro- vides access to interventions and supports, which can significantly improve long-term outcomes for autistic individuals. Atypical social behavior such as difficul- ties understanding social cues is a core fea- ture of ASD. Yet, given that each culture has its own set of expectations for normative social behaviors, behaviors that are con- sidered signs of ASD in one culture may be interpreted as typical or even desirable in another culture. For instance, in many Western cultures, children are expected to engage in eye contact from an early age, and a lack of eye contact may be viewed as a red flag for ASD. Conversely, in other cul- tures, avoiding direct eye contact is a sign of respect or modesty, therefore, children who avoid eye contact may not be perceived as engaging in atypical behavior by those within their community. In cultures that pri- oritize collectivism and group interaction, a child who exhibits solitary or independent play may be seen as socially withdrawn and potentially autistic, whereas, in other cul- tural contexts, independent play may sim- ply reflect a personal preference or even be seen as desirable. As such, professionals must avoid interpreting behaviors without consideration of culture norms. Stigma related to disabilities, particularly ASD, can differ significantly across cultures. ASD may be viewed through a medical or psychological framework in some commu- nities, but in others, ASD may be viewed as a sign of spiritual or familial failure (e.g., a curse). 4 These differences in perceptions can impact how families respond to a potential ASD diagnosis and whether they seek pro- fessional help. In some communities, dis- abilities are highly stigmatized, leading to a delay in seeking services for those who exhibit signs of ASD. Moreover, caregivers and families may feel shame or embarrass- ment about the diagnosis, or they may not ascribe to the medical model of ASD and, instead, seek alternative therapies or tradi- tional healing practices. Cultural Bias in Screening and Diagnostic Tools Many of the commonly used ASD-spe- cific screening and diagnostic tools were developed within Western contexts, with predominantly White males from middle- and upper-class families. Therefore, these tools may reflect norms that are not appli- cable across cultures and lead to misdiag- nosis or a missed diagnosis. For instance, despite the widespread use of the Modified Checklist for Autism in Toddlers (M-CHAT), the M-CHAT has demonstrated lower speci- ficity and lower positive predictive values (i.e., the likelihood that a child who screens positive on the M-CHAT will actually be diagnosed withASD) among Black children, Asian children, and children from other or multiple racial groups compared to White children.5Arecent study examined differen- tial item functioning (DIF) of Autism Diag- nostic Observation Schedule, Second Edi- tion (ADOS-2), a “gold-standard”diagnostic tool for ASD, items across sex and race. 6 While most of the items on the ADOS-2 did not show DIF across sex or race, eight items had significant DIF across race, with most of the items exhibiting greater diffi- culty and poorer discrimination in Black children compared to White children. Five items showed significant DIF across sex. A study investigating the validity of the Span- ish version of the Autism Diagnostic Inter- view-Revised (ADI-R), another “gold-stan- dard”diagnostic tool for assessingASD, in a U.S.-based Latino population found that the ADI-R had lower sensitivity and specificity than those observed in the original valida- tion study of the ADI-R. 7 More research is needed to assess the reliability and validity of existing diagnostic tools. Screening and Assessment Considerations for Diverse Populations When screening for and diagnosing ASD in diverse populations, several impor- tant considerations need to be taken into account to ensure that accurate, equitable, and culturally sensitive services are being provided. We must: 1. Understand cultural variations in social norms and expectations. 2. Recognize cultural differences in how ASD may manifest. 3. Understand how ASD is perceived across cultures. 4. Develop tools and assessment prac- tices that are culturally sensitive and inclusive. 5. Recognize the limitations of our cur- rent screening and diagnostic tools and practices. By considering cultural variations in behavior and norms in conjunction with being aware of barriers, stigma, disparities, and the limitations of our current screen- ing and diagnostic tools, professionals can improve diagnostic accuracy of ASD and ensure that all individuals, regardless of their cultural background, receive respect- ful and appropriate care. Recognizing Autism Across Cultures: The Impact of Bias in Screening & Diagnosis By Trenesha L. Hill, PhD