‘If I was a different ethnicity, would she treat me the same?’: Latino parents’ experiences obtaining autism services

Abstract

This article reports on an ethnographic study with 12 Latino families of children on the autism spectrum related to obtaining autism services in Los Angeles County. Using critical discourse analysis of interviews, observations, and records, we consider the experiences of the Latino families in relation to: a discursively constructed ‘autism parent’ subject position that mandates ‘fighting’ service systems to ‘win’ autism services for children, originating from White middle-class parents’ socioeconomic resources and social capital; a neoliberal social services climate that assumes scarcity of available resources and prioritizes austerity in their authorization; and a media and institutional ‘cultural deficit’ discourse that attributes disparities in autism services for Latino children to their parents’ presumed culturally-based ‘passivity.’ We argue that parental discourse about fighting, or not fighting, for autism services is engendered by a tension between a parental logic of care, and the logic of competition of the economic market.

Keywords:

• Autism
• critical discourse analysis
• services
• disparities
• public school
• special education

Acknowledgements

The authors are grateful to the parents, children, and practitioners who participated in the study. They also acknowledge the support of the Mrs. T. H. Chan Division of Occupational Science and Occupational Therapy at the University of Southern California and the Department of Occupational Therapy in the University of Illinois at Chicago College of Applied Health Sciences. The content of this article is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health, the National Center for Advancing Translational Sciences, the University of Southern California Diploma in Innovation, the Society for the Study of Occupation: USA, or the Department of Health and Human Services.

Notes

1. We note arguments that the increased visibility of autism diagnoses in high-income countries is related to sociocultural norms, economic resources, the influence of the biomedical model, and particular diagnostic, clinical, and research practices. Our interest here is primarily in autism as a sociocultural phenomenon (Nadesan 2005; Solomon 2010; Solomon and Bagatell 2010).

2. Runswick-Cole (2016) uses the term ‘autism mom’ because a great number of autism parents are mothers. However, we use the term ‘autism parent’ because it was used by parents in our study, and because a number of fathers in our study were closely involved in their children’s autism services.

3. We use pseudonyms for all research participants.

4. The term ‘warrior’ is by no means a unified or uncontested term when used to describe autism mothers. Jenny McCarthy’s (2008) anti-vaccine ‘crusade,’ reflected in her book, Mother Warriors: A Nation of Parents Healing Autism Against All Odds, is an example of a deeply divisive ideology of motherly warfare.

5. The job description was reprinted in the Queensland Autism Parents’ Handbook (Heeman 2015), showing how the autism parent identity moves through time and space.

6. Runswick-Cole (2016) previously notes that it is most often sons with autism due to higher rates of diagnosis in boys; and mothers are frequently primary caregivers, so the ‘duty’ is most often theirs.

7. To be considerate of this family’s privacy, we have omitted their names used in the article.

8. This assessment uses a recent Pew Research Center analysis of lower, middle, and upper income tiers in the United States (Accessed March 3, 2017. http://www.pewresearch.org/fact-tank/2016/05/11/are-you-in-the-american-middle-class/). One family’s city median household income was US$80,000; all others ranged from US$30,000 to 60,000. City average household sizes were slightly larger than the Los Angeles County average.

9. One therapist and one therapy supervisor were recruited; see Angell (2016) for details about recruitment challenges.

10. Deborah Rutgers is a pseudonym. We use a full name because Sofia and Daniel always referred to her by her full name.

11. As of 2014, the Hispanic/Latino population made up 17% of the total population of the United States (Accessed March 3, 2017. https://factfinder.census.gov/faces/tableservices/jsf/pages/productview.xhtml?src=bkmk).