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Black and African-American families are underrepresented in research on autism spectrum disorder (ASD) and few studies have explored how to increase their involvement. To address this gap in the literature, this study explored the perspectives of 22 Black families raising children with ASD in order to identify facilitators and barriers to research participation; as well as suggestions to increase their involvement in ASD studies. Facilitators to research involvement included a desire to contribute to ASD research inclusive of Black families; to seek information and support for child and/or caregiver; and, to engage with culturally responsive research team members. Barriers to research involvement included stigma; denial, shame, and/or embarrassment; distrust of the research process; lack of time/interest; and research material inaccessibility or literacy issues.
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Baio, J., Wiggins, L., Christensen, D. L., Maenner, M. J., Daniels, J.… Dowling, N. F. (2018). Prevalence of autism spectrum disorder among children aged 8 years—Autism and developmental disabilities monitoring network, 11 sites, United States, 2014. MMWR Surveillance Summaries, 67(SS-6), 1–23. PubMedCentral
Barton, M. L., Dumont-Mathieu, T., & Fein, D. (2012). Screening young children for autism spectrum disorders in primary practice. Journal of Autism and Developmental Disorders, 42(6), 1165–1174. PubMed
Burkett, K. W., 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 & Developmental Disorders, 45(10), 3244–3254.
Corbin, J. M., & Strauss, A. (1990). Grounded theory research: Procedures, canons, and evaluative criteria. Qualitative Sociology, 13(1), 3–21.
Cross, W. E. (1991). Shades of black: Diversity in African-American identity. Philadelphia: Temple University Press.
Dababnah, S., Shaia, W., Campion, K., & Nichols, H. (2018). We had to keep pushing”: Caregivers’ perspectives on autism screening and referral practices of black children in primary care. Intellectual and Developmental Disabilities, 56(5), 321–336. PubMed
Daniels, A. M., Rosenberg, R., Anderson, C., Law, J., Marvin, A., & Law, P. (2012). Verification of parent-report of child autism spectrum disorder diagnosis to a web-based autism registry. Journal of Autism & Developmental Disorders, 42(2), 257–265. https://doi.org/10.1007/s10803-011-1236-7.
Hilton, C. L., Fitzgerald, R. T., Jackson, K. M., Maxim, R. A., Bosworth, C. C., Shattuck, P. T., … Constantino, J. N. (2010). Brief report: Under-representation of African Americans in autism genetic research: A rationale for inclusion of subjects representing diverse family structures. Journal of Autism and Developmental Disorders, 40(5), 633–639. PubMedPubMedCentral
Magaña, S., Parish, S. L., Rose, R. A., Timberlake, M., & Swaine, J. G. (2012). Racial and ethnic disparities in quality of health care among children with autism and other developmental disabilities. Intellectual and Developmental Disabilities, 50(4), 287–299. PubMed
Mandell, D. S., Ittenbach, R., Levy, S., & Pinto-Martin, J. (2007). Disparities in diagnoses received prior to a diagnosis of autism spectrum disorder. Journal of Autism & Developmental Disorders, 37(9), 1795–1802.
Mandell, D. S., Morales, K. H., Xie, M., Lawer, L. J., Stahmer, A. C., & Marcus, S. C. (2010). Age of diagnosis among Medicaid-enrolled children with autism, 2001–2004. Psychiatric Services, 61(8), 822–829. PubMed
Neuhaus, E., Beauchaine, T. P., Bernier, R. A., & Webb, S. J. (2018). Child and family characteristics moderate agreement between caregiver and clinician report of autism symptoms. Autism Research, 11(3), 476–487. PubMed
Pearson, J. N., & Meadan, H. (2018). African American parents’ perceptions of diagnosis and services for children with autism. Education and Training in Autism and Developmental Disabilities, 53(1), 17–32.
Pierce, N. P., O'Reilly, M. F., Sorrells, A. M., Fragale, C. L., White, P. J., Aguilar, J. M., & Cole, H. A. (2014). Ethnicity reporting practices for empirical research in three autism-related journals. Journal of Autism and Developmental Disorders, 44(7), 1507–1519. https://doi.org/10.1007/s10803-014-2041-x. PubMed
Skinner, C. S., Schildkraut, J. M., Calingaert, B., Hoyo, C., Crankshaw, S. S., Fish, L., Susswein, L., Jasper, C., & Reid, L. (2008). Factors associated with African Americans’ enrollment in a national cancer genetics registry. Public Health Genomics, 11(4), 224–233.
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(10), 1902–1912. PubMed
U. S. Census Bureau. (2018). QuickFacts. Retrieved from https://www.census.gov/quickfacts/fact/table/US/PST045217.
U.S. Census Bureau. (2011). The black population: 2010. Retrieved from https://www.census.gov/prod/cen2010/briefs/c2010br-06.pdf.
van Beusekom, M. M., Grootens-Wiegers, P., Bos, M. J., Guchelaar, H. J., & van den Broek, J. M. (2016). Low literacy and written drug information: information-seeking, leaflet evaluation and preferences, and roles for images. International Journal of Clinical Pharmacy, 38(6), 1372–1379. PubMedPubMedCentral
West, E. A., Travers, J. C., Kemper, T. D., Liberty, L. M., & Cote, D. L., McCollow, M. M., & Lynn Stansberry, L. (2016). Racial and ethnic diversity of participants in research supporting evidence-based practices for learners with autism spectrum disorder. The Journal of Special Education, 50(3), 151–163.
- Brief Report: Participation of Black and African-American Families in Autism Research
Wendy E. Shaia
Helen M. Nichols
- Springer US
Journal of Autism and Developmental Disorders
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432