Advertisement

Disparities in Diagnosis and Service Access for Minority Children with ASD in the United States

  • Waganesh A. ZelekeEmail author
  • Tammy L. Hughes
  • Natalie Drozda
Original Paper

Abstract

This study examined children with an autism spectrum disorder (ASD) using data from the 2011 Survey of Pathway to Diagnosis and Services national data set (n = 1715). When comparing white and minority families, results indicate there were no differences between the child’s treatment needs based on the number and type of ASD symptoms or insurance coverage. However, minority parents were less likely to contact a doctor or health care professionals about their concerns, waiting years, rather than months as described by white families, to have the child evaluated. Although both white and minority families received similar types of care (e.g., conducting developmental tests, making a referral to a specialist, suggesting that the parent discuss the concern with the school), white families reported they were more formally engaged in the diagnostic process and subsequently visited a larger variety of service providers. White parents were more satisfied with the services that their child received from doctors and other health care providers whereas minority families indicated school services were more responsiveness to their needs. Recommended outreach efforts are suggested and described.

Keywords

Autism Disparity Mental health access Minority families Diagnosis 

Notes

Author Contributions

WAZ designed the study, conducted the statistical analysis, analyzed the data, wrote the initial draft of the paper, and participated in revising the manuscript and addressing the reviewers’ comments. TLH assisted with manuscript development, provided guidance on statistical analysis, and actively participated in writing part of the paper and revising the manuscript as well as addressing the reviewers’ comments. ND assisted with manuscript development and reviewing the literature necessary to this article.

References

  1. Blaxill, M. F. (2004). What’s going on? The question of time trends in autism. Public Health Report, 119(6), 536–551.CrossRefGoogle Scholar
  2. Buescher, A. V., Cidav, A., Knapp, M., & Mandell, D. S. (2014). Costs of autism spectrum disorderin the United Kingdom and the United States. JAMA Pediatrics, 168(8), 689.  https://doi.org/10.1001/jamapediatrics.2014.210.CrossRefGoogle Scholar
  3. Burkett, K., Morris, E., Manning-Courtney, P., Anthony, J., & Shambley-Ebron, D. (2015). African American families on autism diagnosis and treatment: The influence of culture. Journal of Autism and Developmental Disorders, 45(10), 3244–3254.CrossRefGoogle Scholar
  4. Center for Disease Control (2016). Community Report on Autim. Retrived July, 2018 https://www.cdc.gov/ncbddd/autism/documents/commreport-autism-full-report.pdf.
  5. Center for Disease Control and Prevention. (2018). Autism prevalence slightly higher in CDC’s ADDM Network. Retrieved from https://www.cdc.gov/media/releases/2018/p0426-autism-prevalence.html.
  6. Chaidez, V., Garcia, E. F., Wang, L. W., Angkustsiri, K., Krakowiak, P., Hertz-Picciotto, I., et al. (2018). Comparison of maternal beliefs about cauess of autism spectrum disorder and association with utilization of services and treatments. Child: Care, Health and Development, 44(6), 916–925.Google Scholar
  7. Christensen, D. L., Baio, J., Van Naarden Braun, K., 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(3), 1–23.Google Scholar
  8. Emerson, N. D., Morrell, H. E. R., & Neece, C. (2016). Predictors of age of diagnosis for children with autism spectrum disorder: The role of a consistent source of medical care, race, and condition severity. Journal of Autism and Developmental Disorders, 46(1), 127–138.CrossRefGoogle Scholar
  9. Ennis-Cole, D., Durodoye, B. A., & Harris, H. L. (2013). The Impact of culture on autism diagnosis and treatment: Considerations for counselors and other professionals. The Family Journal, 21(3), 279–287.CrossRefGoogle Scholar
  10. Flanagan, H. E., Perry, A., & Freeman, N. L. (2012). Effectiveness of large-scale community-based intensive behavioral intervention: A waitlist comparison study exploring outcomes and predictors. Research in Autism Spectrum Disorders, 6(2), 673–682.CrossRefGoogle Scholar
  11. Fontil, L., & Petrakos, H. H. (2015). Transition to school: The experiences of Canadian and immigrant families of children with autism spectrum disorders. Psychology in the Schools, 52(8), 773–788.CrossRefGoogle Scholar
  12. Jackson, S., & Volkmar, F. (2019). Diagnosis and definition of autism and other pervasive developmental disorer. In F. Volkmar (Ed.), Autism and pervasive developmental disorders. Cambridge: Cambridge University Press.Google Scholar
  13. Järbrink, K. (2007). The economic consequences of autistic spectrum disorder among children in a Swedish municipality. Autism: The International Journal of Research and Practice, 11(5), 453–463.CrossRefGoogle Scholar
  14. Jarquin, V. G., Wiggins, L. D., Schieve, L. A., & Naarden-Braun, K. V. (2011). Racial disparities in community identification of spectrum disorders over time; metropolitan Atlanta, Georgia, 2000–2006. Journal of Developmental and Behavioral Pediatrics, 32, 179–187.CrossRefGoogle Scholar
  15. Jegatheesan, B. (2011). Multilingual development in children with autism: Perspectives of south Asian Muslim immigrant parents on raising a child with a communicative disorder in multilingual contexts. Bilingual Research Journal, 34(2), 185–200.CrossRefGoogle Scholar
  16. Johnson, C. N. (2014). Autism spectrum disorder: The role of race and culture in parent interpretation and service utilization (Doctoral dissertation). Retrieved from Proquest (3673915).Google Scholar
  17. Jussila, K. K., Kuusikko-Gauffin, S. A., Mattila, M., Loukusa, S., Pollock-Wurman, R. A., Joskitt, L. O., et al. (2015). Cross-cultural differences in the parent rated social responsiveness scale (SRS)? Evaluation of the Finnish version among high-functioning school aged males with and without autism spectrum disorder. Research in Autism Spectrum Disorder, 9, 38–44.CrossRefGoogle Scholar
  18. Liptak, G. S., Stuart, T., & Auinger, P. (2006). Health care utilization and expenditures for children with autism: Data from U.S. national samples. Journal of Autism and Developmental Disorders, 36, 871–879.  https://doi.org/10.1007/s10803-006-0119-9.CrossRefGoogle Scholar
  19. Lundstrom, S., Reichenberg, A., Anckarsater, H., Lichtenstein, P., & Gillberg, C. (2015). Autism phenotype versus registered diagnosis in Swedish children: Prevalence trends over 10 years in general population samples. BMJ, 350, 1961.CrossRefGoogle Scholar
  20. Magana, S., Parish, S. L., & Son, E. (2016). Functional severity and Latino ethnicity in specialty services for children with autism spectrum disorder. Journal of Intellectual Disability Research, 60(5), 424–434.CrossRefGoogle Scholar
  21. Mandell, D. S., & Novak, M. (2005). The role of culture in families’ treatment decisions for children with autism spectrum disorders. Mental Retardation and Developmental Disabilities Research Reviews, 11(2), 110–115.CrossRefGoogle Scholar
  22. Mandell, D. S., Wiggins, L., Carpenter, L., Daniels, J., DiGuiseppi, C., Durkin, M.,…, Kirby, R. (2009). Racial/ethnic disparities in the identification of children with Autism Spectru Disorders. American Journal of Public Health, 99, 493–498.Google Scholar
  23. McCabe, H. (2007). Parent advocacy in the face of adversity: Autism and families in the People’s Republic of China: Learning from parents’ perspective. Research and Practice for Persons with Severe Disabilities, 22(1), 39–50.Google Scholar
  24. Owens, P. L., Hoagwood, K., Horwitz, S. M., Leaf, P. J., Poduska, J. M., Kellam, S. G., & Ialongo, N. S. (2002). Barriers to children’s mental health services. Journal of the American Academy of Child and Adolescent Psychiatry, 41, 731–738.Google Scholar
  25. Øien, R. A., & Nordahl-Hansen, A. (2018). Bias in Assessment Instruments for Autism. In F. Volkmar (Ed.), Encyclopedia of autism spectrum disorders. New York: Springer.Google Scholar
  26. Palmer, R., Blanchard, S., Jean, C. R., & Mandell, D. S. (2005). School district resources and identification of children with autistic disorder. American Journal of Public Health, 95, 125–130.CrossRefGoogle Scholar
  27. Pondé, M., & Rousseau, C. (2013). Immigrant children with autism spectrum disorder: The relationship between the perspective of the professionals and the parents’ point of view. Journal of the Canadian Academy of Child and Adolescent Psychiatry, 22(2), 131–138.Google Scholar
  28. Ramsey, E., Kelly-Vance, L., Allen, J. A., Rosol, O., & Yoerger, M. (2016). Autism spectrum disorder prevalence rates in the United States: Methodologies, challenges, and implications for individual states. Journal of Developmental and Physical Disabilities, 28(6), 803–820.CrossRefGoogle Scholar
  29. Sage, K. D., & Jegatheesan, B. (2010). Perceptions of siblings with autism and relationships with them: European American and Asian American siblings draw and tell. Journal of Intellectual & Developmental Disability, 35(2), 92–103.CrossRefGoogle Scholar
  30. Samadi, S. A., & McConkey, R. (2014). The utility of the Gilliam autism rating scale for identifying Iranian children with autism. Disability and Rehabilitation, 36(6), 452–456.  https://doi.org/10.3109/09638288.2013.797514.CrossRefGoogle Scholar
  31. Schieve, L. A., Boulet, S. L., Blumberg, S. J., Kogan, M. D., Yeargin-Allsopp, M., Boyle, C. A.,…, Rice, C. (2012). Association between parental nativity and autism spectrum disorder among US-born non-Hispanic and Hispanic children, 2007 National Survey of Children’s Health. Disability and Health Journal, 5(1), 18–25.Google Scholar
  32. Tek, S., & Landa, R. J. (2012). Differences in autism symptoms between minority and non-minority toddlers. Journal of Autism and Developmental Disorders, 42(9), 1967–1973.CrossRefGoogle Scholar
  33. Thomas, K. C., Ellis, A. R., McLaurin, C., Daniels, J., & Morrissey, J. P. (2007). Access to care for autism-related services. Journal of Autism and Developmental Disorders, 37, 1902–1912.CrossRefGoogle Scholar
  34. Torto, G. (2009). Differences in assessment and diagnosis of autism spectrum disorder among professionals and organizations: A possible reason for the increase in reported prevalence. ProQuest. Dissertation Abstractions International Section B: The Sciences and Engineering 70(4-B), 2589.Google Scholar
  35. U.S. Census Bureau. (2013). American Community Survey. Retrieved from https://www.census.gov/programs-surveys/acs/.
  36. U.S. Department of Education, National Center for Education Statistics. (2018). The Condition of Education 2018 (2018–144), English Language Learners in Public Schools. Retrieved from https://nces.ed.gov/programs/coe/indicator_cgf.asp.
  37. U.S.C. 1400. (2004). Individuals with Disabilities Education Improvement Act, USA.Google Scholar
  38. Varghese, M. S. (2015). Cultural and religious factors on mental health perceptions and attitudes among Indian orthodox Christians in the United States. Dissertation Abstracts International Section A, 76.Google Scholar
  39. Wang, H., & West, E. A. (2016). Asian American immigrant parents supporting children with autism: Perceptions of fathers and mothers. International Journal of Whole Schooling, 12(1), 1–21.Google Scholar
  40. Yu, B. (2013). Issues in bilingualism and heritage language maintenance: Perspectives of minority-language mothers of children with autism spectrum disorders. American Journal of Speech-Language Pathology, 22(1), 10–24.CrossRefGoogle Scholar
  41. Zeleke, W., Hughes, T. L., Tiberi, A. E., & Drozda, N. (2017). Healthcare and educational services used by children with autism spectrum disorders in poverty. Perspectives on Early Childhood Psychology and Education. Google Scholar

Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2019

Authors and Affiliations

  • Waganesh A. Zeleke
    • 1
    Email author
  • Tammy L. Hughes
    • 1
  • Natalie Drozda
    • 1
  1. 1.Duquesne UniversityPittsburghUSA

Personalised recommendations