Language Barriers Impact Access to Services for Children with Autism Spectrum Disorders
Racial and ethnic disparities in accessing health care have been described in children with autism spectrum disorder (ASD). In a retrospective chart review of 152 children with ASD, children of parents whose primary language was English were significantly more likely to have both social skills and communication goals within their individualized education plan (IEP) compared to children of parents whose primary language was not English. Additionally, children of primary English speakers received significantly more hours of direct services from their state disability program. After controlling for demographic covariates, findings suggest that language barriers may negatively affect parents’ abilities to access health care services for their child with ASD. Acculturation factors must therefore be considered when analyzing disparities in autism.
KeywordsAutism spectrum disorder Health care disparities Individualized education plan Language barriers Access to services
The authors would like to thank Eugene Nguyen for his assistance with data analysis.
This study was funded by a Summer Research Fellowship awarded to the first author by the School of Medicine at the authors’ home institution.
HS participated in data interpretation and drafted the manuscript. SS participated in the design of the study, supervised statistical analyses, and helped to draft the manuscript. CP conceived of the study, participated in its design and conducted data collection. MW participated in interpretation of data and helped to draft the manuscript. DV participated in the design and coordination of the study and helped to draft the manuscript.
Compliance with Ethical Standards
Conflict of interest
The authors declare that they have no conflict of interest.
For this type of study formal consent is not required. All study procedures were approved by the Institutional Review Board at the authors’ home institution.
Research Involving Human and Animal Participants
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
- American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th edn., text rev.). Washington, DC: Author.Google Scholar
- Becerra, D., Androff, D., Messing, J. T., Castillo, J., & Cimino, A. (2015). Linguistic acculturation and perceptions of quality, access, and discrimination in health care among Latinos in the United States. Social Work in Health Care, 54(2), 134–157. doi: 10.1080/00981389.2014.982267.CrossRefPubMedGoogle Scholar
- California Education Code (2001) § 56029.Google Scholar
- California Education Code (2010) § 56341.1 subparts (a, f).Google Scholar
- Casenhiser, D. M., Binns, A., McGill, F., Morderer, O., & Shanker, S. G. (2015). Measuring and supporting language function for children with autism: evidence from a randomized control trial of a social-interaction-based therapy. Journal of Autism and Developmental Disorders, 45(3), 846–857. doi: 10.1007/s10803-014-2242-3.CrossRefPubMedGoogle Scholar
- Centers for Disease Control and Prevention. (2016). Key findings from the ADDM network: A snapshot of autism spectrum disorder. Retrieved from https://www.cdc.gov/features/new-autism-data/community-report-autism-key-findings.pdf.
- Christensen, D. L., Baio, J., Braun, K. V., Bilder, D., Charles, J., Constantino, J. N., … Yeargin-Allsopp, M. (2016) Prevalence and characteristics of autism spectrum disorder among children aged 8 years—Autism and developmental disabilities monitoring network, 11 Sites, United States, 2012. MMWR Surveillance Summaries, 65(No. SS-3), 1–23. doi: 10.15585/mmwr.ss6503a1.CrossRefGoogle Scholar
- Disability Rights California. (2011). Special education rights and responsibilities. (Chap. 4). California: Feldman, J. & RosenbaumGoogle Scholar
- Gulley, S. P., Rasch, E. K., & Chan, L. (2014). Difference, disparity and disability: a comparison of health, insurance coverage, and health service use on the basis of race/ethnicity among US adults with disabilities, 2006–2008. Medical Care, 52(10), S9-S16. doi: 10.1097/MLR.0000000000000129.PubMedCentralGoogle Scholar
- Human Services Research Institute for the California Department of Developmental Services. (2013). National core indicators child family Survey California statewide report fiscal year 2012–2013. Retrieved from http://www.dds.ca.gov/QA/docs/reportCFS1.pdf.
- Individuals with Disabilities (2004) Education Act of 2004, 20 U.S.C. § 1414.Google Scholar
- Institute of Medicine (US). (2001). Crossing the quality chasm: A new health system for the 21st century. Washington, D.C: National Academy Press.Google Scholar
- L&M Policy Research, LLC. (2014). Autism spectrum disorders (ASD): State of the states of services and supports for people with ASD. Retrieved from http://www.autismspeaks.org/sites/default/files/docs/gr/asd-state-of-the-states-report.pdf.
- Liptak, G. S., Benzoni, L. B., Mruzek, D. W., Nolan, K. W., Thingvoll, M. A., Wade, C. M., & Fryer, G. E. (2008). Disparities in diagnosis and access to health services for children with autism: Data from the National survey of children’s health. Journal of Developmental Behavioral Pediatrics. 29(3). 152–160. doi: 10.1097/DBP.0b013e318165c7a0.CrossRefPubMedGoogle Scholar
- Mandell, D. S., Wiggins, L. D., Carpenter, L. A., Daniels, J., DiGuiseppi, C., Durkin, M. S., … Kirby, R. S. (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.CrossRefPubMedPubMedCentralGoogle Scholar
- National Research Council. (2001). Educating Children with Autism. Committee on Educational Interventions for Children with Autism. In C. Lord & J.P. McGee (Eds.), Division of Behavioral and Social Sciences and Education. Washington, DC: National Academy Press.Google Scholar
- Ryan, C., U.S. Department of Commerce. (2013). Language Use in the United States: 2011. Report prepared for United States Census Bureau, American Community Survey Reports.Google Scholar