Perceptions and Knowledge of Autism Spectrum Disorder Among Burmese Refugees in Indiana

Background and Purpose: The purpose of this study is to ascertain the level of knowledge and awareness of autism spectrum disorder (ASD) among Burmese refugees in one U.S. city. Prevalence rates of ASD and age of diagnosis vary across racial and ethnic categories in the United States. Asian and Pacific Islanders exhibit some of the lowest prevalence rates of ASD relative to other groups (CDC, 2019), while demonstrating underutilization of health and mental health services (SAMHSA, 2020). Minority and immigrant families are more likely to experience delayed diagnoses of children with ASD.

Methods: This community-engaged study employed mixed methodology to collect data related to Burmese refugees’ exposure to and knowledge of autism spectrum disorder. The research team included a Burmese community member, who is a native speaker of multiple Burmese languages. Anonymous 19-item surveys, in English, Hakha, and Falam, were disseminated in-person and online to Burmese community members. In-depth interviews were conducted in-person and by phone with five Burmese families with children who have been diagnosed with ASD. Interviews were conducted and transcribed in Falam by a native speaker. Transcripts were translated into English and analyzed through thematic coding by two coders.

Results: Of the survey respondents (N=219), the majority were ages 18 to 25 years old and lived in the U.S. for more than 5 years. Approximately 75% of respondents reported having heard of autism, yet less than 25% of respondents knew of services for ASD. Survey respondents self-reported a mean score of 2.48 for knowledge about autism (scale of 1-5, 5=high knowledge). 56% of participants reported knowing a Burmese community member diagnosed with ASD. 14% of survey participants have a family member diagnosed with ASD. The correlation between having a family member with autism and knowledge of resources for ASD was statistically significant (p <0.01). Interview themes included: parents’ feelings of guilt, perceptions of environmental causes of ASD, stigma, and lack of community understanding of autism.

Conclusions and Implications: Findings indicate relatively low knowledge of ASD and interventions for autism. Data indicate lack of health literacy about developmental disorders and community resources for ASD, which are important considerations for detection and support for families. Survey data indicate that there may be considerable prevalence of ASD or exposure to individuals diagnosed with autism in the Burmese community. The researchers recognize a need for further ethnic-specific research and health education related to ASD for Burmese communities.