Date Presented 04/04/19
Disparities exist regarding ASD diagnosis for Latino children. Findings from narrative interviews exploring how Latino parents and caregivers perceive ASD diagnosis will help illuminate how health information is communicated within this at-risk population and inform the development of future targeted education and intervention programs.
Primary Author and Speaker: Lucia Florindez
Additional Authors and Speakers: Dominique Como, Daniella Florindez, Sharon Cermak, Leah Duker
PURPOSE: Documented disparities exist regarding autism diagnosis for Latino children. When compared to white children, previous research has shown that Latino children are diagnosed at a later age (Mandell, Listerud, Levy, & Pinto-Martin, 2002) and experience difficulties with accessing necessary services (Angell, Frank, & Solomon, 2016; Zuckerman et al., 2014). Given these issues, it is necessary to explore what Latino parents, caregivers, and community members understand about the diagnosis of ASD. The purpose of this study is to identify the beliefs held by diverse, Los Angeles-based Latino families about the diagnosis of Autism Spectrum Disorder (ASD), and the psychosocial, familial, medical, and cultural factors that inform them.
DESIGN: The study is a qualitative design, utilizing in-person interviews with Latino parents and caregivers, and a narrative description form of data analysis to interpret findings. Participants were Latino parents and caregivers of children with and without ASD who were recruited from local community centers, occupational therapy clinics, and via social media.
METHOD: As part of a larger qualitative study on in-home oral care, 18 Los Angeles-based Latino families with a child aged 6-12 (n=8 neurotypical, n=10 ASD) were interviewed twice in their native language (Spanish or English) for approximately 1-2.5 hours each session. As a secondary line of questioning, families were probed to discuss their perceptions of ASD, including describing the disorder and their experiences involving ASD. Interviews were transcribed verbatim and analyzed by three coders using in vivo and thematic coding schemas to identify patterns across the data.
RESULTS: Four themes pertaining to Latino parents’ and caregivers’ knowledge and details about their beliefs about the diagnosis of ASD were identified: 1) Misconceptions explained the various fallacies perpetuated in the Latino community about ASD, including that their child is “broken” or cursed. 2) Parents as students and teachers described how parents had to learn about their child’s diagnosis to then be able to educate others and act as their child’s advocate. 3) Outside Influence clarified the information provided by non-family members, including health care providers, community members, or social network connections; and 4) Cultural Stigma focused on information that originated from the family’s cultural background, including religious and folk discussions, and influence of family members on sharing information and opinions, situating the ASD diagnosis within Latino culture.
CONCLUSION: Findings provide insight into how Latino families perceive Autism diagnosis. Exploring these perspectives will help illuminate how health information is communicated within this at-risk population, and inform the development of future targeted education and intervention programs. Further research is necessary to understand how these beliefs about ASD relate to quality of care and mitigating health disparities in this population, and clarify the role that providers can play in relaying important information about ASD to their patients.
IMPACT STATEMENT: An in-depth understanding of what Latino parents and caregivers perceive about ASD diagnosis will inform the design of new methods to better educate families and improve services for children with ASD. The findings highlight the need for health providers to create education programs about ASD, and outline a crucial role occupational therapists can fill by providing their clients with this information.
References
Angell, A. M., Frank, G., & Solomon, O. (2016). Latino families’ experiences with autism services: disparities, capabilities, and occupational justice. OTJR: Occupation, Participation and Health, 36(4), 195-203. doi:10.1177/1539449216666062
Mandell, D. S., Listerud, J., Levy, S. E., & Pinto-Martin, J. A. (2002). Race differences in the age at diagnosis among Medicaid-eligible children with Autism. Journal of the American Academy of Child & Adolescent Psychiatry, 41(12), 1447-1453. doi:10.1097/00004583-200212000-00016
Zuckerman, K. E., Sinche, B., Mejia, A., Cobian, M., Becker, T., & Nicolaidis, C. (2014). Latino parents' perspectives on barriers to Autism diagnosis. Academic Pediatrics, 14(3), 301- 308. doi:10.1016/j.acap.2013.12.004
