Motherhood and Autism
Friday, June 1, 2018
3:00 - 3:45pm
Ivette Becerra
Ivette Becerra is a co-principal investigator for an NIH-funded pilot study initiative at the UCLA Center for Autism Research and Treatment (CART). There she collaborates with Dr.Hayes-Bautista, Director of the UCLA Center for the Study of Latino Health and Culture (CESLAC) to examine how Latinx parents of autistic children use mobile technology to access services for their children. She received this pilot grant shortly after graduating from UCLA with a B.A. degree in Chicana/o Studies in 2015. Witnessing her mother struggle to find services and support for Kevin - her 11-year-old autistic brother - inspired her to document and shed light on stories of families like hers. Ivette is currently applying to law school and graduate school in Public Health to advocate for under-resourced communities of color. She hopes to one day inform culturally competent, and data-based policies to empower communities of color with disabilities. |
“Lo que mas me preocupa es que va a pasar con mi hij@ cuando yo no este” : Conceptualization of Latina Mothers’ Journey to Accepting Autism
Ivette Becerra BACKGROUND Acceptance of autism diagnosis among Latinx families is compounded by the stigma associated with disabilities from family members and community, low levels of socioeconomic status, an inadequate number of professionals trained to understand family values and cultural beliefs, including, but not limited to, language barriers (Blanche et al., 2015 & Zuckerman et al., 2013). After receiving the diagnosis parents are expected to advocate for their children’s rights and needs. However, not understanding or accepting the diagnosis, or not knowing how to deal with the stigma associated with autism might delay seeking services (Blanche et al., 2015). Parent involvement in the education of their children is generally considered to support and benefit children’s educational experiences and opportunities (Epstein, 1996; Jeynes, 2003). The experiences of Latinx parents of autistic children are not well documented, and the dearth of literature on this population warrants further research. OBJECTIVES This study seeks to understand Latina mothers’ journeys to understanding and accepting the autism diagnosis. METHODS IRB approval was obtained to interview 21 self-identified English and Spanish speaking Latinx parents of children with ASD and 3 key informants (community leaders). Criteria for study participation included residency in Los Angeles County, being of Latin American descent, of low SES, as defined by the U.S. Federal Poverty Guidelines, and a parent of a child between the ages of 2 and 10 years with a professional diagnosis of ASD. Key informants were eligible if they worked with low-income, Latino parents of autistic children. Focus groups and interviews were conducted utilizing open ended prompts to elicit discussion. Interviews and focus groups were audio recorded, transcribed verbatim, and independently coded for major conceptual models. Exploratory, qualitative analyses were conducted using a modified grounded theory approach. Six raters coded each transcript to ensure reliability. Data triangulation and methodology triangulation were employed to ensure validity and reliability of data interpretation. RESULTS Participants reported undergoing a multilayered approach to accepting the autism diagnosis at home. The approach began with a period of denial, information and support seeking, parent advocacy and the persistent attempt at obtaining services in order for their children to one day live self-determined lives. Many parents disclosed having difficulty accepting their child’s autism diagnosis. The participants resistance to accepting autism oftentimes stemmed from not fully comprehending the diagnosis, from miscommunicated or omitted information from their healthcare providers, and disability stigma in the community. Yet, the strongest hurdle toward accepting the diagnosis was not about who their children are as people, but rather the fear of their children’s future without self-agency. Despite the denial and stigma, participants expressed that their fear for their children's future is what pushed them towards engaging with the process of seeking help and resources. The parents' first step in seeking help for their children was understanding autism by searching the Internet and asking their social networks (i.e. family, friends, regional center, and school) for more information.Their search for knowledge and resources was met with resistance from these agencies. Spanish-speaking parents proclaimed feeling overwhelmed due to the lack of resources and information in Spanish. Parents drew from their social and navigational capital for emotional support to help them regain their self-confidence to advocate, to learn how to navigate the school system services, and to demand institutional support to ensure appropriate accommodations for their children. Participants reported taking on roles of self-advocates, teachers, and lawyers. Although their resilience helped them to keep advocating for services that would help their child’s sense of independence, they still reported having to constantly fight for their requests to be heard. CONCLUSION Improved understanding of how Latinx parents deal with and ultimately accept the diagnosis may facilitate the development of culturally and linguistically sensitive tools that will increase parental advocacy and maximize the utilization of services by Latinx autism children. In addition, the finding that despite the barriers Latinx parents take an active role in accepting the diagnosis and actively seeking support for their children, challenges narratives of hopelessness and fatalism. As documented in the literature, some researchers have described the beliefs of Latino cultures as ones in which people can do little to alter their fate and therefore do not actively seek early services (Flores, Bauchner, Feinstein, & Nguyen, 1999). The current political climate of our country warrants Latinx researchers to uplift the stories of disenfranchised, disabled (vulnerable) communities of color. |
