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

References

• @catonatrampoline. 2014. “A Job for Life.” Cat on a Trampoline Blog. https://catonatrampoline.wordpress.com/2014/01/16/a-job-for-life/.
   Google Scholar
• @michaelsmum88. 2016. “How to Support an Autism Parent.” Michael’s Mum Blog. http://www.michaelsmum.com/how-to-support-an-autism-parent/.
   Google Scholar
• Angell, Amber Michelle. 2016. “Understanding Bilingual Latino Parents’ Experiences of Their Children’s Autism Services in Los Angeles: A Critical Ethnography.” PhD diss., University of Southern California.
   Google Scholar
• Angell, Amber Michelle, Gelya Frank, and Olga Solomon. 2016. “Latino Families’ Experiences with Autism Services: Disparities, Capabilities, and Occupational Justice.” OTJR: Occupation, Participation, Health 36 (4): 195–203. doi:10.1177/1539449216666062.
   PubMed Web of Science ®Google Scholar
• Angell, Amber Michelle, and Olga Solomon. 2014. “The Social Life of Health Records: Understanding Families' Experiences of Autism.” Social Science & Medicine 117: 50–57. doi:10.1016/j.socscimed.2014.07.020.
   PubMed Web of Science ®Google Scholar
• Angell, Amber Michelle, and Olga Solomon. 2017. “Understanding Parents’ Concerns about Their Children with Autism Taking Public School Transportation in Los Angeles County.” Autism: 1–13. doi:10.1177/1362361316680182.
   Google Scholar
• Bagatell, Nancy. 2010. “From Cure to Community: Transforming Notions of Autism.” Ethos 38 (1): 33–55. doi:10.1111/j.1548-1352.2009.01080.x.34.
   Web of Science ®Google Scholar
• Bettelheim, Bruno. 1967. The Empty Fortress: Infantile Autism and the Birth of the Self. New York: The Free Press.
   Google Scholar
• Bilaver, Lucy A., Lisa S. Cushing, and Ann T. Cutler. 2016. “Prevalence and Correlates of Educational Intervention Utilization among Children with Autism Spectrum Disorder.” Journal of Autism and Developmental Disorders 46: 561–571. doi:10.1007/s10803-015-2598-z.
   PubMed Web of Science ®Google Scholar
• Blum, Linda M. 2007. “Mother-Blame in the Prozac Nation: Raising Kids with Invisible Disabilities.” Gender and Society 21 (2): 202–226. http://www.jstor.org.libproxy2.usc.edu/stable/27640959.10.1177/0891243206298178
   Web of Science ®Google Scholar
• Broder-Fingert, Sarabeth, Amy Shui, Christian D. Pulcini, Daniel Kurowski, and James M. Perrin. 2013. “Racial and Ethnic Differences in Subspecialty Service Use by Children with Autism.” Pediatrics 132 (1): 94–100. doi:10.1542/peds.2012-3886.
   PubMed Web of Science ®Google Scholar
• Bruce, Susan Marie, and Kavita Venkatesh. 2014. “Special Education Disproportionality in the United States, Germany, Kenya, and India.” Disability & Society 29 (6): 908–921. doi:10.1080/09687599.2014.880330.
   Web of Science ®Google Scholar
• Centers for Disease Control and Prevention. 2014. “Prevalence of Autism Spectrum Disorder among Children Aged 8 Years – Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2010.” MMWR: Surveillance Summaries 63 (2): 1–24. doi: 24670961.
   Web of Science ®Google Scholar
• Connor, David J., and Beth A. Ferri. 2007. “The Conflict within: Resistance to Inclusion and Other Paradoxes in Special Education.” Disability & Society 22 (1): 63–77. doi:10.1080/09687590601056717.
   Web of Science ®Google Scholar
• Douglas, Patty. 2010. “‘Problematising’ Inclusion: Education and the Question of Autism.” Pedagogy, Culture & Society 18 (2): 105–121. doi:10.1080/14681366.2010.488039.
   Google Scholar
• Elsabbagh, Mayada, Gauri Divan, Yun-Joo Koh, Young Shin Kim, Shuaib Kauchali, Carlos Marcín, Cecilia Montiel-Nava, et al. 2012. “Global Prevalence of Autism and Other Pervasive Developmental Disorders.” Autism Research 5 (3): 160–179. doi:10.1002/aur.239.
   PubMed Web of Science ®Google Scholar
• Eyal, Gil. 2013. “For a Sociology of Expertise: The Social Origins of the Autism Epidemic.” American Journal of Sociology 118 (4): 863–907. doi:10.1086/668448.
   Web of Science ®Google Scholar
• Fisher, Pamela, and Dan Goodley. 2007. “The Linear Medical Model of Disability: Mothers of Disabled Babies Resist with Counter-Narratives.” Sociology of Health and Illness 29 (1): 66–81. doi:10.1111/j.1467-9566.2007.00518.x.
   PubMed Web of Science ®Google Scholar
• Goodley, Dan. 2007. “Becoming Rhizomatic Parents: Deleuze, Guattari and Disabled Babies.” Disability & Society 22 (2): 145–160. doi:10.1080/09687590601141576.
   Web of Science ®Google Scholar
• Hansen, Helena, Philippe Bourgois, and Ernest Drucker. 2014. “Pathologizing Poverty: New Forms of Diagnosis, Disability, and Structural Stigma under Welfare Reform.” Social Science & Medicine 103: 76–83. doi:10.1016/j.socscimed.2013.06.033.
   PubMed Web of Science ®Google Scholar
• Harstad, Elizabeth, Noelle Huntington, Janine Bacic, and William Barbaresi. 2013. “Disparity of Care for Children with Parent-Reported Autism Spectrum Disorders.” Academic Pediatrics 13 (4): 334–339. doi:10.1016/j.acap.2013.03.010.
   PubMed Web of Science ®Google Scholar
• Harvey, David. 2005. A Brief History of Neoliberalism. Oxford: Oxford University Press.
   Google Scholar
• Hays, Sharon. 1996. The Cultural Contradictions of Motherhood. New Haven, CT: Yale University Press.
   Google Scholar
• Heeman, Heidi. 2015. “Queensland Autism Parents’ Handbook: Your Essential Guide to Services and Supports in Queensland.” Autism World Magazine, August. https://issuu.com/autismworldmagazine/docs/queensland-autism-parents-handbook.
   Google Scholar
• Hodgetts, Sandra, David Nicholas, Lonnie Zwaigenbaum, and David McConnell. 2013. “Parents' and Professionals' Perceptions of Family-Centered Care for Children with Autism Spectrum Disorder across Service Sectors.” Social Science and Medicine 96: 138–146. doi:10.1016/j.socscimed.2013.07.012.
   PubMed Web of Science ®Google Scholar
• Hurlbutt, Karen, and Lynne Chalmers. 2002. “Adults with Autism Speak out: Perceptions of Their Life Experiences.” Focus on Autism and Other Developmental Disabilities 17 (2): 103–111.10.1177/10883576020170020501
   Google Scholar
• Interacting with Autism. 2016. “Finding Hope in a Community of 25,000 Others like Me.” Interview with Matthew Asner, Autism Speaks Executive Director, Southern California. Accessed February 29. http://www.interactingwithautism.com/video/asnerm_0001
   Google Scholar
• Kang-Yi, Christina D., Jill Locke, Steven C. Marcus, Trevor R. Hadley, and David S. Mandell. 2016. “School-Based Behavioral Health Service Use and Expenditures for Children with Autism and Children with Other Disorders.” Psychiatric Services 67 (1): 101–106. doi:10.1176/appi.ps.201400505.
   PubMed Web of Science ®Google Scholar
• Kanner, L. 1943. “Autistic Disturbances of Affective Contact.” Nervous Child 2: 217–250.
   Google Scholar
• Kröger, Teppo. 2009. “Care Research and Disability Studies: Nothing in Common?.” Critical Social Policy 29 (3): 398–420. doi:10.1177/0261018309105177.10.1177/0261018309105177
   Web of Science ®Google Scholar
• Landsman, Gail H. 2009. Reconstructing Motherhood and Disability in the Age of Perfect Babies. New York: Routledge Taylor & Francis Group.
   Google Scholar
• Lareau, Annette. 2011. Unequal Childhoods: Class, Race, and Family Life. 2nd ed. Berkeley: University of California Press.
   Google Scholar
• Leigh, J. Paul, Scott D. Grosse, Diana Cassady, Joy Melnikow, and Irva Hertz-Picciotto. 2016. “Spending by California’s Department of Developmental Services for Persons with Autism across Demographic and Expenditure Categories.” PLoS ONE 11 (3): 1–23. doi:10.1371/journal.pone.0151970.
   Web of Science ®Google Scholar
• Lilley, Rozanna. 2011. “The ABCs of Autism: Aspects of Maternal Pedagogy in Australia.” Social Analysis 55 (1): 134–159. doi:10.3167/sa.2011.550107.
   Google Scholar
• Magaña, Sandra M., Kristina Lopez, Arellys Aguinaga, and Holly Morton. 2013. “Access to Diagnosis and Treatment Services among Latino Children with Autism Spectrum Disorders.” Intellectual and Developmental Disabilities 51 (3): 141–153. doi:10.1352/1934-9556-51.3.141.
   PubMed Web of Science ®Google Scholar
• Mandell, David S., Lisa D. Wiggins, Laura Arnstein Carpenter, Julie Daniels, Carolyn DiGuiseppi, Maureen S. Durkin, Ellen Giarelli, et al. 2009. “Racial/Ethnic Disparities in the Identification of Children with Autism Spectrum Disorders.” American Journal of Public Health 99 (3): 493–498. doi:10.2105/AJPH.2007.131243.
   PubMed Web of Science ®Google Scholar
• Marvasti, Amir B. 2002. “Constructing the Service-Worthy Homeless through Narrative Editing.” Journal of Contemporary Ethnography 31 (5): 615–651. doi:10.1177/089124102236544.
   Web of Science ®Google Scholar
• McCarthy, Jenny. 2008. Mother Warriors: A Nation of Parents Healing Autism against All Odds. New York: Penguin Group.
   Google Scholar
• Mol, Annemarie. 2008. The Logic of Care: Health and the Problem of Patient Choice. New York: Routledge.
   Google Scholar
• Nadesan, Majia Holmer. 2005. Constructing Autism: Unraveling the “Truth” and Understanding the Social. New York: Routledge Taylor & Francis Group.
   Google Scholar
• Ong-Dean, Colin. 2006. “High Roads and Low Roads: Learning Disabilities in California, 1976–1998.” Sociological Perspectives 49 (1): 91–113. doi:10.7208/chicago/9780226630021.001.0001.
   Web of Science ®Google Scholar
• Patton, Michael Quinn. 2014. Qualitative Research and Evaluation Methods. 4th ed. Los Angeles, CA: Sage Publications.
   Google Scholar
• Peacock, Marian, Paul Bissell, and Jenny Owen. 2014. “Dependency Denied: Health Inequalities in the Neo-Liberal Era.” Social Science & Medicine 118: 173–180. doi:10.1016/j.socscimed.2014.08.006.
   PubMed Web of Science ®Google Scholar
• Rapp, Rayna, and Faye Ginsburg. 2001. “Enabling Disability.” Public Culture 13 (3): 533–556.10.1215/08992363-13-3-533
   Web of Science ®Google Scholar
• Rothenberg, Mira. 2003. Children with Emerald Eyes: Histories of Extraordinary Boys and Girls. Berkeley: North Atlantic Books.
   Google Scholar
• Rouse, Martyn, and Lani Florian. 1998. “Inclusive Education in the Market-Place.” International Journal of Inclusive Education 1 (4): 323–336. doi:10.1080/1360311970010403.
   Google Scholar
• Rudman, Debbie. 2013. “Critical Discourse Analysis: Adding a Political Dimension to Inquiry.” In Transactional Perspectives on Occupation, edited by Malcolm P. Cutchin and Virginia A. Dickie, 169–181. New York: Springer.10.1007/978-94-007-4429-5
   Google Scholar
• Runswick-Cole, Katherine. 2014. “‘Us’ and ‘Them’: The Limits and Possibilities of a ‘Politics of Neurodiversity’ in Neoliberal times.” Disability & Society 29 (7): 1117–1129. doi:10.1080/09687599.2014.910107.
   Web of Science ®Google Scholar
• Runswick-Cole, Katherine. 2016. “Understanding This Thing Called Autism.” In Re-Thinking Autism: Diagnosis, Identity and Equality, edited by Katherine Runswick-Cole, Rebecca Mallett, and Sami Timimi, 19–29. London: Jessica Kingsley.
   Google Scholar
• Runswick-Cole, Katherine, Rebecca Mallett, and Sami Timimi, eds. 2016. Re-Thinking Autism: Diagnosis, Identity and Equality. London: Jessica Kingsley.
   Google Scholar
• Russell, Ginny. 2016. “Early Diagnosis of Autism: Is Earlier Always Better?” In Re-Thinking Autism: Diagnosis, Identity and Equality, edited by Katherine Runswick-Cole, Rebecca Mallett and Sami Timimi, 252–268. London: Jessica Kingsley.
   Google Scholar
• Ryan, Sara, and Katherine Runswick-Cole. 2008. “Repositioning Mothers: Mothers, Disabled Children and Disability Studies.” Disability & Society 23 (3): 199–210. doi:10.1080/09687590801953937.
   Web of Science ®Google Scholar
• Scott, Anne, and Carolyn Doughty. 2012. “Care, Empowerment and Self-Determination in the Practice of Peer Support.” Disability & Society 27 (7): 1011–1024. doi:10.1080/09687599.2012.695578.
   Web of Science ®Google Scholar
• Silverman, Chloe. 2013. Understanding Autism: Parents, Doctors, and the History of a Disorder. Princeton, NJ: Princeton University Press.
   Google Scholar
• Singh, Jennifer S. 2016. “Parenting Work and Autism Trajectories of Care.” Sociology of Health and Illness 38 (7): 1106–1120. doi:10.1111/1467-9566.12437.
   PubMed Web of Science ®Google Scholar
• Solomon, Olga. 2010. “Sense and the Senses: Anthropology and the Study of Autism.” Annual Review of Anthropology 39 (1): 241–259. doi:10.1146/annurev.anthro.012809.105012.
   Web of Science ®Google Scholar
• Solomon, Olga, and Nancy Bagatell. 2010. “Introduction – Autism: Rethinking the Possibilities.” Ethos 38 (1): 1–7. doi:10.1111/j.1548-1352.2009.01078.x.
   Web of Science ®Google Scholar
• Sousa, Amy C. 2011. “From Refrigerator Mothers to Warrior-Heroes: The Cultural Identity Transformation of Mothers Raising Children with Intellectual Disabilities.” Symbolic Interaction 34 (2): 220–243. doi:10.1525/si.2011.34.2.220.
   Web of Science ®Google Scholar
• Sousa, Amy C. 2015. “‘Crying Doesn’t Work’: Emotion and Parental Involvement of Working Class Mothers Raising Children with Developmental Disabilities.” Disability Studies Quarterly 35 (1): 1–6.
   PubMedGoogle Scholar
• Timimi, Sami. 2010. “The McDonaldization of Childhood: Children’s Mental Health in Neo-Liberal Market Cultures.” Transcultural Psychiatry 47 (5): 686–706. doi:10.1177/1363461510381158.
   PubMed Web of Science ®Google Scholar
• U.S. Department of Education. 2004. Individuals with Disabilities Education Improvement Act of 2004. United States. http://idea.ed.gov/download/statute.html.
   Google Scholar
• Ward, Michael J., and Roger N. Meyer. 1999. “Self-Determination for People with Developmental Disabilities and Autism: Two Self-Advocates’ Perspectives.” Focus on Autism and Other Developmental Disabilities 14 (3): 133–139. doi:10.1177/108835769901400302.
   Google Scholar
• Wodak, Ruth Emily. 2004. “Critical Discourse Analysis.” In Qualitative Research Practice, edited by Clive Seale, Giampietro Gobo, Jaber F. Gubrium, and David Silverman, 197–213. London: Sage.
   Google Scholar
• de Wolfe, Juliette. 2014. Parents of Children with Autism: An Ethnography. New York: Palgrave Macmillan US.10.1057/9781137436238
   Google Scholar
• Ytterhus, Borgunn, Christian Wendelborg, and Hege Lundeby. 2008. “Managing Turning Points and Transitions in Childhood and Parenthood – Insights from Families with Disabled Children in Norway.” Disability & Society 23 (6): 625–636. doi:10.1080/09687590802328535.
   Web of Science ®Google Scholar
• Zarembo, Alan. 2011. “Warrior Parents Fare Best in Securing Autism Services.” Los Angeles times, December 13. http://www.latimes.com/local/autism/la-me-autism-day-two-html-htmlstory.html.
   Google Scholar