A comparison of the ASD experience of low-SES hispanic and non-hispanic white parents.
Hispanic
SES
autism spectrum disorder
Journal
Autism research : official journal of the International Society for Autism Research
ISSN: 1939-3806
Titre abrégé: Autism Res
Pays: United States
ID NLM: 101461858
Informations de publication
Date de publication:
12 2019
12 2019
Historique:
received:
18
01
2019
revised:
03
07
2019
accepted:
28
08
2019
pubmed:
23
10
2019
medline:
22
9
2020
entrez:
23
10
2019
Statut:
ppublish
Résumé
This study compared the experiences of Hispanic families, who were primarily of Mexican heritage, and non-Hispanic White families from the United States both from low socioeconomic status (SES) backgrounds having a child with a diagnosis of Autism Spectrum Disorder (ASD). The Centers for Disease Control and Prevention (CDC) reports that Hispanic children are diagnosed with ASD 2 years later than non-Hispanic White children [Baio et al., MMWR Surveillance Summaries 2018:67(SS-6): 1-23]. However, there has been limited investigation in exploring how SES might impact both diagnosis and experience. A survey of basic demographic information and a qualitative survey were used for this study. Basic demographic information obtained included SES, parent educational level, age of diagnosis of the children, religious affiliation, and marital status. Hour-long interviews were conducted to gather information about the personal experiences of these families relating to diagnoses and treatment. Comparative results of basic demographic information showed no difference in age of diagnosis between the two groups when SES was controlled. Although SES was controlled, the non-Hispanic White families had a higher education level and were slightly wealthier. Qualitatively, similarities included family support, doctor response to parent concerns, and acceptance of diagnosis by family members and friends. Differences included religious views, acceptance of diagnosis, knowledge of developmental milestones, and finding resources. Most significantly, the findings indicate no difference in the age of diagnosis of ASD between the Hispanic and non-Hispanic White children, which could be attributed to increased awareness and having access to a proactive parent organization. Autism Res 2019, 12: 1880-1890. © 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: This study showed that Hispanic and Non-Hispanic White children from poor backgrounds got a diagnosis of Autism Spectrum Disorder (ASD) at the same age. Results show differences in religious views, acceptance of diagnosis, knowledge of milestones, and finding resources. This might be because people are more aware of ASD today and Hispanic families were involved with an active parent organization.
Types de publication
Comparative Study
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
1880-1890Informations de copyright
© 2019 International Society for Autism Research, Wiley Periodicals, Inc.
Références
Alvarado, I. (2005). An analysis of the participation of immigrant Hispanic mothers in their child's early intervention program (PhD dissertation). The University of Georgia, Athens, Georgia. Retrieved from www.fcs.uga.edu/ss/docs/alvardo_maria_i_200512_phd.pdf
Baio, J., Wiggins, L., Christensen, D. L., Maenner, M. J., Daniels, J., Warren, Z., … Dowling, N. F. (2018). Prevalence of autism spectrum disorder among children aged 8 years - Autism and Developmental Disabilities Monitoring Network, 11 sites. United States. MMWR Surveillance Summaries, 67(SS-6), 1-23. https://doi.org/10.15585/mmwr.ss6706a1
Becker, G., & Newsom, E. (2003). Socioeconomic status and dissatisfaction with health care among chronically ill African Americans. Journal of Public Health, 93(5), 742-748. https://doi.org/10.2105/AJPH.93.5.742
Blacher, J., Lopez, S., Shapiro, J., & Fusco, J. (1997). Contributions to depression in Hispanic mothers with and without children with retardation: Implications for caregiving. Family Relationships, 46(4), 325-334. https://doi.org/10.2307/585093
Bonner, M. J., & Finney, J. W. (1996). A psychosocial model of children's health status. In T. H. Ollendick & R. J. Prinz (Eds.), Advances in clinical child psychology (Vol. 18, pp. 231-282). New York: Plenum Press.
Casillas, N., Vigil, D. C., & Wang, H. (2017). Hispanic and white Parents’ experiences raising their child with ASD: An exploratory study. The Qualitative Report, 22(8), 2173-2195.
U. S. Census Bureau. (2014). American Hispanic agenda report. American Hispanics: Forging a stronger America, 4. Retrieved from http://d3n8a8pro7vhmx.cloudfront.net/themes/5307deb3ebad647150000002/attachments/original/1411421437/2014_American_Hispanic_Agenda_Report.pdf?1411421437
Chapman, A. L., Hadfield, M., & Chapman, C. J. (2015). Qualitative research in healthcare: An introduction to grounded theory using thematic analysis. Journal of the Royal College of Physicians of Edinburgh, 45, 201-205.
Charmaz, K. (2014). Constructing Grounded Theory (2nd ed.). London: Sage Publications.
Colbert, A. M., Webber, J., & Graham, R. (2016). Factors that influence Autism knowledge in Hispanic cultures: A pilot study. Journal of Racial and Ethnic Health Disparities, 4(2), 1-9. https://doi.org/10.1007/s40615-016-0213-4
Corbin, J., & Strauss, A. (2007). Basics of qualitative research techniques and procedures for developing grounded theory (3rd ed.). Thousand Oaks, CA: Sage.
De Giacomo, A., & Fombonne, E. (1998). Parental recognition of developmental abnormalities in autism. European Child and Adolescents Psychiatry, 7(3), 131-136. https://doi.org/10.1007/s007870050058
Dominick, K. C., Ornstein, N. D., Lainhart, J., Tager-Flusberg, H., & Folstein, S. (2007). Atypical behaviours in children with autism and children with a history of language impairment. Research in developmental disabilities, 28, 145-162. https://doi.org/10.1016/j.ridd.2006.02.003
Durkin, M. S., Maenner, M. J., Meaney, F. J., DiGuiseppi, C., Nicholas, J. S., Kirby, R. S., … Schieve, L. A. (2010). Socioeconomic inequality in the prevalence of autism spectrum disorder: Evidence from a U.S. cross-sectional study. PLoS One, 5(7), e11551. https://doi.org/10.1371/journal.pone.0011551
Dyches, T. T., Wilder, L. K., Sudweeks, R. R., Obiakor, F. E., & Algozzine, B. (2004). Multicultural issues in autism. Journal of Autism and Developmental Disorders, 34(2), 211-222. https://doi.org/10.1023/B:JADD.0000022611.80478.73
Greef, A. P., & van der Walt, K. (2010). Resilience in families with an autistic child. Education and Training in Autism and Developmental Disabilities, 45(3), 347-355.
Hewitt, A., Gulaid, A., Hamre, K., Esler, A., Punyko, J., Reichle, J., & Reiff, M. (2013). Minneapolis Somali autism spectrum disorder prevalence project: Community report 2013. Minneapolis, MN: University of Minnesota, Institute on Community Integration, Research and Training Center on Community Living.
Hillman, J. (2007). Grandparents of children with autism: A review with recommendations for education, practice, and policy. Educational Gerontology, 33, 513-527.
Hollingshead, A. B. (1983). Hollingshead two factor index of social position. In D. Miller (Ed.), Handbook of research design and social measurement (4th ed., pp. 300-308). New York, NY: Longman.
Jasni, D., Wan Ahmad Jaafar, W. Y., & Toh, S. C. (2011). A preliminary investigation: Potential of interactive multimedia learning awareness (IMLA) in enhancing awareness among autism parents in Malaysia. Paper presented at the Graphic & Multimedia Symposium 2010, Universiti Tenaga Nasional, Kajang.
Kraermer, R. (2010). Special education placement factors for Hispanic students (Unpublished doctoral dissertation). Tucson, AZ: University of Arizona.
Levy, S. E., Mandell, D. S., Merhar, S., Ittenbach, R. F., & Pinto-Martin, J. A. (2003). Use of complementary and alternative medicine among children recently diagnosed with autistic spectrum disorder. Journal of Developmental and Behavioral Pediatrics, 24(6), 418-423. https://doi.org/10.1007/s10803-006-0192-0
Magaña, S., Lopez, K., Aguinaga, A., & Morton, H. (2013). Access to diagnosis and treatment services among Hispanics. Intellectual and Developmental Disabilities, 51(3), 141-153.
Mandell, D. S., Listerud, J., Levy, S., & Pinto-Martin, J. A. (2002). Race differences in the age at diagnosis among Medicaid-eligible children with autism. Journal of the American Academy of Child and Adolescent Psychiatry, 41(12), 1447-1453. https://doi.org/10.1097/00004583-200212000-00016
Mandell, D. S., & Novak, M. (2005). The role of culture in families’ treatment decisions for children with autism spectrum disorder. Mental Retardation and Developmental Disabilities Research Reviews, 11(2), 110-115. https://doi.org/10.1002/mrdd.20061
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, 493-498. https://doi.org/10.2105/AJPH.207.131243
Merriam, S. B. (1998). Qualitative research and case study applications in education. San Francisco, CA: Jossey-Bass.
Patton, M. Q. (2001). Qualitative research and evaluation methods (2nd ed.). Thousand Oaks, CA: Sage Publications.
Pedersen, A., Pettygrove, S., Meaney, F. J., Mancilla, K., Gotschall, K., Kessler, D. B., & Cunniff, C. (2012). Prevalence of autism spectrum disorders in Hispanic and white children. Pediatrics, 129(3), e629-e635. https://doi.org/10.1542/peds.2011-1145
Pisula, E. (2011). Parenting stress in mothers and fathers of children with autism spectrum disorders. A comprehensive book on autism spectrum disorders. Retrieved from http://www.intechopen.com/books/a-comprehensive-book-on-autism-spectrum-disorders/parenting-stress-in-mothers-and-fathers-of-children-with-autism-spectrum-disorders
Pitten, K. (2008). How cultural values influence diagnosis, treatment and the welfare of families with an autistic child. InSight: Rivier Academic Journal, 4(1), 1-5.
Seidman, I. (1999). Interviewing as qualitative research: A guide for researchers in education and the social sciences. New York: Teachers College Press.
Skinner, D. G., Correa, V., Skinner, M., & Bailey, D. B. (2001). Role of religion in the lives of Hispanic families of young children with developmental delays. American Journal of Mental Retardation, 106, 297-313.
Yin, R. K. (2014). Case study research: Design and methods (5th ed.). Thousand Oaks, CA: Sage Publications.
Zuckerman, K. E., Mattox, B. S., Donelan, K., Batbayar, O., Baghaee, A., & Bethell, C. (2013). Pediatrician identification of Hispanic children at risk for autism spectrum disorder. Pediatrics, 132, 445-453. https://doi.org/10.1542/peds.2013-0383
Zuckerman, K. E., Sinche, B., Mejia, A., Cobian, M., Becker, T., & Nicolaidis, C. (2014a). Hispanic parents' perspectives on barriers to autism diagnosis. Academic Pediatrics, 14(3), 301-308. https://doi.org/10.1016/j.acap.2013.12.004
Zuckerman, K. E., Sinche, B., Cobian, M., Cervantes, M., Mejia, A., Becker, T., & Nicolaidis, C. (2014b). Conceptualization of autism in the Hispanic community and its relationship with early diagnosis. Journal of Developmental and Behavioral Pediatrics, 35(8), 522.