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i
Understanding Bilingual Latino Parents’ Experiences of their
Children’s Autism Services in Los Angeles:
A Critical Ethnography
by
Amber Michelle Angell
A Dissertation Presented to the
FACULTY OF THE GRADUATE SCHOOL
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
DOCTOR OF PHILOSOPHY
(OCCUPATIONAL SCIENCE)
May 13, 2016
Object Description
| Title | Understanding bilingual Latino parents’ experiences of their children’s autism services in Los Angeles: a critical ethnography |
| Author | Angell, Amber Michelle |
| Author email | aangell@usc.edu;amber.angell@gmail.com |
| Degree | Doctor of Philosophy |
| Document type | Dissertation |
| Degree program | Occupational Science |
| School | School of Dentistry |
| Date defended/completed | 2016-03-22 |
| Date submitted | 2016-04-20 |
| Date approved | 2016-04-21 |
| Restricted until | 2018-04-20 |
| Date published | 2018-04-20 |
| Advisor (committee chair) | Solomon, Olga |
| Advisor (committee member) |
Frank, Gelya Lawlor, Mary Mattingly, Cheryl |
| Abstract | This dissertation research is a 12-month critical ethnographic study of the experiences of 12 bilingual Latino families of children with autism spectrum disorder living in Los Angeles County. Latino children in the United States experience disparities in autism diagnosis and services compared to White children, but little is known about how their families experience these disparities. The purpose of this study is to understand Latino parents’ experiences of their children’s autism services, which include treatments, interventions, and supports. The theoretical framework utilizes narrative phenomenology (Mattingly, 2010), a theory of practice that privileges parents’ emic perspectives, foregrounding the narrative shape and contingent nature of lived experience. Expanding upon narrative phenomenology, this dissertation critically examines discourses that shape parents’ occupational experiences related to their children’s autism services. Situated in a ‘critical moment’ in occupational science (Farias & Laliberte Rudman, 2016), this research views the sociocultural, political economic context that shapes parents’ experiences of their children’s autism services from the perspective of ‘life on the ground.’ ❧ The findings are presented in a ‘three-paper’ dissertation format, such that three distinct analyses are written as standalone, publication-ready manuscripts. The unifying thread throughout the three manuscripts is the work that parents did to obtain, maintain, and manage their children’s autism services, which is conceptualized as an over-arching, multi-faceted occupation of managing autism services. 1) “‘Doing Family’: Disparities, Opportunities, and Capabilities in Latino Families’ Experiences of Their Children’s Autism Services"" utilizes an occupational analysis of family life to understand why Latino parents opted out of state-funded behavioral interventions for their children. A critical analysis revealed that parents opted out not because of a ‘cultural deficit,’ e.g., a lack of understanding of the potential benefits of the intervention, but because of a structural mismatch of services with the family’s occupational needs. The opportunity for behavior therapy did not enable the families’ capability (Sen, 1999) to ‘do family’ in a way that was meaningful to them. The findings show how the concepts of opportunity and capability can support the operationalization of occupational justice. To remedy situations of occupational injustice and reduce service disparities, opportunities, such as access to services, must be delivered in a way that enables individuals and families to convert them into capabilities. 2) “’You Have to Be Ready for Battle’: Latino Parents’ Experiences of their Children’s Autism Services in the Era of Austerity” situates Latino parents’ experiences with systems of care within an ‘autism parent’ discourse in which parents, usually mothers, ‘fight’ systems of care to ‘win’ services for their children. I argue that the ‘autism parent’ discourse is shaped by White, middle- and upper-class resources and capital, and that the discourse obscures the double standard that Latino parents face: They can fight for and possibly ‘win’ services but at great financial, emotional, and social cost; or they can choose not to fight to ensure that professionals will not mistreat their children in retaliation, but not ‘win’ the services they feel their children need and risk being labeled by professionals as unaware of their children’s needs. 3) “School Bus Stories: Understanding Latino Parents’ Concerns about the Safety and Independence of their Children with Autism Spectrum Disorder” examines Latino parents’ experiences related to their children’s public school transportation. Two bus stories, unrelated incidents in which children with autism in the study were ‘lost’ while under the care of their school district transportation departments, are presented as “theoretically critical cases” (Blatter, 2008). The bus stories represent two themes from the broader data corpus: The cost of parents’ broken trust when they feel their children are placed in unsafe situations by school district staff, and the tension parents experienced between their desires for their children’s independence and safety. I critically examine school district professionals’ emphasis on children’s ‘independence,’ which is used to deny their requests for services (e.g., a bus aide to assist the child). Findings reveal the need to address the independence and safety of individuals with autism while taking school or public transportation. |
| Keyword | autism spectrum disorder; Latino; services; healthcare disparities; ethnography; critical |
| Language | English |
| Format (imt) | application/pdf |
| Part of collection | University of Southern California dissertations and theses |
| Publisher (of the original version) | University of Southern California |
| Place of publication (of the original version) | Los Angeles, California |
| Publisher (of the digital version) | University of Southern California. Libraries |
| Provenance | Electronically uploaded by the author |
| Type | texts |
| Legacy record ID | usctheses-m |
| Contributing entity | University of Southern California |
| Rights | Angell, Amber Michelle |
| Physical access | The author retains rights to his/her dissertation, thesis or other graduate work according to U.S. copyright law. Electronic access is being provided by the USC Libraries in agreement with the author, as the original true and official version of the work, but does not grant the reader permission to use the work if the desired use is covered by copyright. It is the author, as rights holder, who must provide use permission if such use is covered by copyright. The original signature page accompanying the original submission of the work to the USC Libraries is retained by the USC Libraries and a copy of it may be obtained by authorized requesters contacting the repository e-mail address given. |
| Repository name | University of Southern California Digital Library |
| Repository address | USC Digital Library, University of Southern California, University Park Campus MC 7002, 106 University Village, Los Angeles, California 90089-7002, USA |
| Repository email | cisadmin@lib.usc.edu |
| Filename | etd-AngellAmbe-4331.pdf |
| Archival file | Volume6/etd-AngellAmbe-4331.pdf |
Description
| Title | Page 1 |
| Repository email | cisadmin@lib.usc.edu |
| Full text | i Understanding Bilingual Latino Parents’ Experiences of their Children’s Autism Services in Los Angeles: A Critical Ethnography by Amber Michelle Angell A Dissertation Presented to the FACULTY OF THE GRADUATE SCHOOL UNIVERSITY OF SOUTHERN CALIFORNIA In Partial Fulfillment of the Requirements for the Degree DOCTOR OF PHILOSOPHY (OCCUPATIONAL SCIENCE) May 13, 2016 |
