Bridging the Gap in Autism Screening: A Mixed-methods Study of Cultural Barriers and Screening Practices in Indian and Indian-american Communities

Background: Autism spectrum disorder (ASD) affects an estimated 1–3% of children globally, but prevalence estimates among children of Indian origin appear significantly underestimated due to cultural barriers and diagnostic practices. Early screening is vital for timely intervention, but little is known about caregiver's knowledge, attitudes, and practices (KAP) related to autism detection in Indian and especially Indian-American communities.

Objectives: To pilot a mixed-methods KAP survey and develop follow-up interviews to explore autism-related knowledge gaps, beliefs, and barriers to early screening among Indian and Indian-American caregivers.

Design/Methods: For this study, we first conducted stakeholder interviews and then developed KAP surveys based on the interview responses and a preexisting UNICEF KAP survey. It was administered to caregivers of Indian children aged 1–10 in India (n=100) and the United States (n=41). Survey items assessed autism-related knowledge, stigma, and awareness and utilization of screening and support services. Results are guiding the design of qualitative interviews to further examine sociocultural influences on screening behaviors. They will also inform future implementation efforts and the development of educational programs for diverse stakeholders.

Results: Misinformation and the influence of cultural beliefs are common in both settings. In India, 39% of caregivers agreed that autism can be cured, and 14% believed vaccines cause autism. In the U.S., 39% believed autism is curable, and 27% attributed it to vaccines. The belief that autism results from past karma was held by 23% of caregivers in India and 12% in the U.S. Stigma was shown in parental concerns about societal shame: 37% of Indian caregivers and 23% of U.S. caregivers believed their community saw autism as a shameful condition. Awareness of autism-related services was low: Only 25% of Indian and 10% of U.S. caregivers knew where to seek local support, despite both populations showing willingness to seek help. Some caregivers, particularly in India, also cited financial barriers to accessing screening and treatment.

Conclusions: Work-in-Progress