International Meeting for Autism Research: The Experiences of Latina Mothers During the Diagnosis of ASD in Their Children

The Experiences of Latina Mothers During the Diagnosis of ASD in Their Children

Thursday, May 20, 2010
Franklin Hall B Level 4 (Philadelphia Marriott Downtown)
11:00 AM
S. K. Dickson , University of Pennsylvania, Philadelphia, PA
E. Giarelli , School of Nurisng, University of Pennsylvania, Philadelphia, PA
Background: Previous research has shown that Latino children are diagnosed on average two years later than Caucasian children. Factors influencing delayed diagnosis include limited access to services, cultural expectations, and parents’ perceptions of disability. The mothers’ perspective on autism, in particular, affects the process. Data from this study could inform ways to improve awareness to the Latino community and modify resources.

Objectives: The primary objective is to describe the experiences of Latina mothers during the diagnosis of her child with an ASD. The specific aims of this study are to: 1) describe the challenges that Latina mothers face as they access diagnostic and treatment services; and 2) identify cultural influences on the process of seeking a diagnosis, type of social support, and access to treatment.

Methods: This qualitative study used thematic analysis. Data were collected by semi-structured telephone interviews with Latina mothers. The interviews focused on the mother’s story of her child’s diagnosis and her account of accessing care. The specific outcome variables include factors affecting the decision to seek a diagnosis, knowledge of autism before and after diagnosis, support networks, and barriers to accessing care.

Results: Thirteen Latina mothers between the ages of 30 and 41 (mean age 36.3 yrs) were interviewed. Their children ranged in age from 5 to 10 (mean age 6.9 yrs) (4 girls and 9 boys). Thematic analysis generated three thematic categories: 1) mother’s knowledge of autism 2) the role of communication with family, the community, doctors and school and 3) gender expectations. For  most mothers (n=13, 85%) the diagnosis of ASD for their child was their first significant encounter with autism and awareness of autism was limited in their community, particularly among their parent’s generation and extended families in Latin America. All mothers used the internet as a primary source of information about ASD. Following the diagnosis of ASD, all mothers expressed that communication between herself and her family and/or community had broken down. Mothers reported feelings of isolation and depression and more difficulties communicating with doctors and teachers. Finally, the gender expectations of having a son presented as a significant factor in coping with the diagnosis in (n=9, 56%) participants with sons.

Conclusions: Preliminary analysis shows that Latino culture has an influence on the experiences of Latina mothers during the diagnosis of their child with autism. Limited understanding of autism among extended families weakened the support networks on which Latina mothers rely and impaired supportive communication. Finally, gender expectations for an affected son appear to influence both the diagnosis of autism and the subsequent adjustment to the diagnosis. Analysis is ongoing.

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