Cross-Cultural Family Perspectives on Early Detection of ASD

Background: Although early social communication delays may be observable by 18-24 months, most children are not diagnosed with autism spectrum disorder (ASD) until 4-5 years of age. Children from minority or underserved backgrounds are identified 1-2 years later restricting access to early intervention. African American children are frequently misdiagnosed with other neurodevelopmental or emotional behavioral disorders and are underrepresented in intervention research (Hilton et al., 2010; Mandell et al., 2005; 2007). Among Latino children, healthcare professionals may be unable to conduct screening in the family’s native language, and they encounter a lack of accessible specialists (Magaña et al., 2015; Zuckerman et al., 2013). Families from minority backgrounds may experience limited resources, socioeconomic variables, varying family interpretation of symptoms related to cross-cultural norms, and lack of trust and partnership with health professionals (Burkett et al., 2015; Grinker et al., 2011). The AAP recommends prioritizing research addressing health disparities in timely access to diagnostic and treatment (Cheng et al., 2010).

Objectives: To describe qualitative research findings from focus groups with diverse families implemented to identify challenges and barriers to early detection and access to care for toddlers under 24 months.

Methods: The research team contacted agencies serving young children and faith-based organizations through the National Black Church Initiative (NBCI). Focus groups were conducted in urban regions of Florida, Georgia, Pennsylvania, and New York. Separate groups were held for parents, grandparents, and parents of children at-risk for developmental delay. There were 105 participants in 8 focus groups; 70% black, 30% white, and 15% Hispanic. Driven by a grounded theory approach, researchers analyzed transcripts of audio-recordings to identify emergent thematic patterns. Multiple sites and diverse stakeholder viewpoints allowed for increased dimensions of variation and saturation of themes. Four members of the research team belonged to minority backgrounds represented in the sample, and verified that inferences were grounded in the data.

Results: Seven cross-cultural perspectives emerged for in-depth inquiry: 1) historical inequalities impact trust, prompting caregivers to view extended family as first-tier medical authority; 2) assumptions made based upon race, ethnicity, home language, and gender result in lack of a distinct call to action when toddlers show signs of ASD and communication delays; 3) people who speak languages other than English may expect children to have delays; 4) cultural beliefs and judgments of mainstream medical services, and need to keep diagnosis and treatment from extended family; 5) desire that others recognize child’s worth and value in the presence of their disability, 6) role of spirituality to understand and cope with child's disability and the church as a place safe from stigma; and 7) increased role of supportive extended family members may serve as protective shield and help interventions fit family lifestyle.

Conclusions: Professionals should be aware of personal biases that may create obstacles for underserved families. To facilitate family engagement and connections to resources, professionals should consider ASD through each family’s cultural lens, utilize evidence-based family-centered practices such as motivational interviewing, understand environmental stressors, and support caregivers’ advocacy competencies (Ennis-Cole et al., 2013; Ingoldsby, 2010).