Top

Journal of Autism and Developmental Disorders

Gepubliceerd in:

16-09-2021 | Commentary

Biases, Barriers, and Possible Solutions: Steps Towards Addressing Autism Researchers Under-Engagement with Racially, Ethnically, and Socioeconomically Diverse Communities

Auteurs: Melissa Maye, Brian A. Boyd, Frances Martínez-Pedraza, Alycia Halladay, Audrey Thurm, David S. Mandell

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 9/2022

Abstract

Autistic individuals who are also people of color or from lower socioeconomic strata are historically underrepresented in research. Lack of representation in autism research has contributed to health and healthcare disparities. Reducing these disparities will require culturally competent research that is relevant to under-resourced communities as well as collecting large nationally representative samples, or samples in which traditionally disenfranchised groups are over-represented. To achieve these goals, a diverse group of culturally competent researchers must partner with and gain the trust of communities to identify and eliminate barriers to participating in research. We suggest community-academic partnerships as one promising approach that results in high-quality research built on cultural competency, respect, and shared decision making.

vorige artikel An overestimation of the prevalence of ASD among psychiatric patients

For this manuscript we have chosen to use both identity- and person- first language throughout to acknowledge the range of preferences of our stakeholders. We respect, and are engaged in, the ongoing conversation.

Bailey, Z. D., Krieger, N., Agénor, M., Graves, J., Linos, N., & Bassett, M. T. (2017). Structural racism and health inequities in the USA: Evidence and interventions. The Lancet, 389(10077), 1453–1463.CrossRef

Begeer, S., El Bouk, S., Boussaid, W., Terwogt, M. M., & Koot, H. M. (2009). Underdiagnosis and referral bias of autism in ethnic minorities. Journal of Autism and Developmental Disorders, 39(1), 142.CrossRef

Benevides, T. W., Shore, S. M., Palmer, K., Duncan, P., Plank, A., Andresen, M.-L., & Hector, B. L. (2020). Listening to the autistic voice: Mental health priorities to guide research and practice in autism from a stakeholder-driven project. Autism, 24(4), 822–833.CrossRef

Botha, M., Hanlon, J., & Williams, G. L. (2021). Does language matter? Identity-first versus person-first language use in autism research: A response to Vivanti. Journal of Autism and Developmental Disorders, 1–9.

Bottema-Beutel, K., Kapp, S. K., Lester, J. N., Sasson, N. J., & Hand, B. N. (2020). Avoiding ableist language: Suggestions for autism researchers. Autism in Adulthood.

Brookman-Frazee, L., Stahmer, A. C., Lewis, K., Feder, J. D., & Reed, S. (2012). Building a research-community collaborative to improve community care for infants and toddlers at-risk for autism spectrum disorders. Journal of Community Psychology, 40(6), 715–734.CrossRef

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. https://doi.org/10.1007/s10803-015-2482-xCrossRefPubMed

Clark, M., & Adams, D. (2020). Listening to parents to understand their priorities for autism research. PloS one, 15(8), e0237376.

Crenshaw, K. W. (2017). On intersectionality: Essential writings: The New Press.

Dababnah, S., Shaia, W. E., Campion, K., & Nichols, H. M. (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.CrossRef

DiAngelo, R. (2018). White fragility: Why it's so hard for white people to talk about racism: Beacon Press.

Downing, N. S., Shah, N. D., Neiman, J. H., Aminawung, J. A., Krumholz, H. M., & Ross, J. S. (2016). Participation of the elderly, women, and minorities in pivotal trials supporting 2011–2013 US Food and Drug Administration approvals. Trials, 17(1), 199.CrossRef

Drahota, A. M. Y., Meza, R. D., Brikho, B., Naaf, M., Estabillo, J. A., Gomez, E. D., & Aarons, G. A. (2016). Community-academic partnerships: A systematic review of the state of the literature and recommendations for future research. The Milbank Quarterly, 94(1), 163–214.CrossRef

Durkin, M. S., Maenner, M. J., Baio, J., Christensen, D., Daniels, J., Fitzgerald, R., & Van Naarden Braun, K. (2017). Autism spectrum disorder among US children (2002–2010): Socioeconomic, racial, and ethnic disparities. American Journal of Public Health, 107(11), 1818–1826.CrossRef

Eisenhower, A., Pedraza, F. M., Sheldrick, R. C., Frenette, E., Hoch, N., Brunt, S., & Carter, A. S. (2020). Multi-stage screening in early intervention: A critical strategy for improving ASD identification and addressing disparities. Journal of Autism and Developmental Disorders, 1–16.

Feinberg, E., Kuhn, J., Eilenberg, J. S., Levinson, J., Patts, G., Cabral, H., & Broder-Fingert, S. (2021). Improving family navigation for children with autism: A comparison of two pilot randomized controlled trials. Academic Pediatrics, 21(2), 265–271.CrossRef

FitzGerald, C., & Hurst, S. (2017). Implicit bias in healthcare professionals: A systematic review. BMC Medical Ethics, 18(1), 1–18.CrossRef

George, S., Duran, N., & Norris, K. (2014). A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders. American Journal of Public Health, 104(2), e16–e31.CrossRef

Hays, P. A. (2001). Addressing cultural complexities in practice: A framework for clinicians and counselors. American Psychological Association. https://doi.org/10.1037/10411-000CrossRef

Holloway, S. D., Cohen, S. R., & Domínguez-Pareto, I. (2018). Culture, stigma, and intersectionality: Toward equitable parent-practitioner relationships in early childhood special education. Handbook of Parent-Implemented Interventions for Very Young Children with Autism (pp. 93–106). NY: Springer.CrossRef

Jones, D. R., & Mandell, D. S. (2020). To address racial disparities in autism research, we must think globally, act locally. Autism, 24(7), 1587–1589. https://doi.org/10.1177/1362361320948313CrossRefPubMed

Kuhlthau, K. A., Bailey, L. C., Baer, B. L., Coury, D. L., Law, J. K., Murray, D. S., & Lipkin, P. H. (2018). Large databases for pediatric research on children with autism spectrum disorder. Journal of Developmental & Behavioral Pediatrics, 39(2), 168–176.CrossRef

Lam, G. Y. H., Holden, E., Fitzpatrick, M., Raffaele Mendez, L., & Berkman, K. (2020). “Different but connected”: Participatory action research using Photovoice to explore well-being in autistic young adults. Autism, 24(5), 1246–1259.CrossRef

Maina, I. W., Belton, T. D., Ginzberg, S., Singh, A., & Johnson, T. J. (2018). A decade of studying implicit racial/ethnic bias in healthcare providers using the implicit association test. Social Science & Medicine, 199, 219–229.CrossRef

Mandell, D. S., Ittenbach, R. F., Levy, S. E., & Pinto-Martin, J. A. (2007). Disparities in diagnoses received prior to a diagnosis of autism spectrum disorder. Journal of Autism and Developmental Disorders, 37(9), 1795–1802.CrossRef

Mandell, D. S., Listerud, J., Levy, S. E., & 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 & Adolescent Psychiatry, 41(12), 1447–1453.CrossRef

McIntosh, P. (2007). White privilege: Unpacking the invisible knapsack. Race, class, and gender in the United States: An integrated study, 177–182.

Moody, E. J., Harris, B., Zittleman, L., Nease, D. E., Jr., & Westfall, J. M. (2019). It’s time for a change!: The appreciative inquiry/bootcamp translation to address disparities in the Latino community with autism spectrum disorders. Cultural Diversity and Ethnic Minority Psychology, 25(1), 113–122. https://doi.org/10.1037/cdp0000242CrossRefPubMed

Neblett, E. W., Jr. (2019). Racism and health: Challenges and future directions in behavioral and psychological research. Cultural Diversity and Ethnic Minority Psychology, 25(1), 12.CrossRef

Nicolaidis, C., Raymaker, D., McDonald, K., Dern, S., Ashkenazy, E., Boisclair, C., & Baggs, A. (2011). Collaboration strategies in nontraditional community-based participatory research partnerships: Lessons from an academic–community partnership with autistic self-advocates. Progress in Community Health Partnerships, 5(2), 143.CrossRef

Ostmeyer, K., & Scarpa, A. (2012). Examining school-based social skills program needs and barriers for students with high-functioning autism spectrum disorders using participatory action research. Psychology in the Schools, 49(10), 932–941.CrossRef

Pellecchia, M., Mandell, D. S., Nuske, H. J., Azad, G., Benjamin Wolk, C., Maddox, B. B., & Hadley, T. (2018). Community–academic partnerships in implementation research. Journal of Community Psychology, 46(7), 941–952.CrossRef

Phelan, S. M., Dovidio, J. F., Puhl, R. M., Burgess, D. J., Nelson, D. B., Yeazel, M. W., & Van Ryn, M. (2014). Implicit and explicit weight bias in a national sample of 4732 medical students: The medical student CHANGES study. Obesity, 22(4), 1201–1208.CrossRef

Riva, M. A. (2016). Judging the past: How history should inform bioethics. Annals of Internal Medicine, 165(9), 675.CrossRef

Robertson, R. E., Sobeck, E. E., Wynkoop, K., & Schwartz, R. (2017). Participant diversity in special education research: Parent-implemented behavior interventions for children with autism. Remedial and Special Education, 38(5), 259–271.CrossRef

Shaia, W. E., Nichols, H. M., Dababnah, S., Campion, K., & Garbarino, N. (2019). Brief report: participation of black and African-American families in autism research. Journal of Autism and Developmental Disorders, 1–6.

Smith, K. A., Gehricke, J.-G., Iadarola, S., Wolfe, A., & Kuhlthau, K. A. (2020). Disparities in service use among children with autism: A systematic review. Pediatrics, 145(Supplement 1), S35–S46.CrossRef

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.CrossRef

Trent, M., Dooley, D. G., & Dougé, J. (2019). The impact of racism on child and adolescent health. Pediatrics, 144(2).

Vivanti, G. (2020). Ask the editor: What is the most appropriate way to talk about individuals with a diagnosis of autism? Journal of Autism and Developmental Disorders, 50(2), 691–693.CrossRef

Voliovitch, Y., Leventhal, J. M., Fenick, A. M., Gupta, A. R., Feinberg, E., Hickey, E. J., Weitzman, C. (2021). Parenting Stress and its Associated Components Prior to an Autism Spectrum Disorder (ASD) Diagnostic Evaluation. Journal of Autism and Developmental Disorders, 1–11.

West, E. A., Travers, J. C., Kemper, T. D., Liberty, L. M., Cote, D. L., McCollow, M. M., & Stansberry Brusnahan, L. 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.CrossRef

Wright, S. C. (2001). Restricted intergroup boundaries: Tokenism, ambiguity, and the tolerance of injustice. In J. T. Jost & B. Major (Eds.), The psychology of legitimacy: Emerging perspectives on ideology, justice, and intergroup relations (pp. 223–254). Cambridge University Press.

Zuckerman, K. E., Lindly, O. J., & Sinche, B. K. (2015). Parental concerns, provider response, and timeliness of autism spectrum disorder diagnosis. The Journal of Pediatrics, 166(6), 1431–1439. https://doi.org/10.1016/j.jpeds.2015.03.007CrossRefPubMedPubMedCentral

Titel: Biases, Barriers, and Possible Solutions: Steps Towards Addressing Autism Researchers Under-Engagement with Racially, Ethnically, and Socioeconomically Diverse Communities
Auteurs: Melissa Maye
Brian A. Boyd
Frances Martínez-Pedraza
Alycia Halladay
Audrey Thurm
David S. Mandell
Publicatiedatum: 16-09-2021
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders / Uitgave 9/2022
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-021-05250-y

Bohn Stafleu van Loghum

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Log in om toegang te krijgen

Andere artikelen Uitgave 9/2022

Prevalence of Autism Spectrum Disorders in Adult Outpatient Psychiatry

Brief Report: Perceptions of Family-Centered Care Across Service Delivery Systems and Types of Caregiver Concerns About Their Toddlers’ Development

The Impact of Birth Order on Language Development in Autistic Children from Simplex Families

Brief Report: The Experiences of Families of Children with an Autism Spectrum Disorder When Seeking Patient-and Family-Centered Care

Maternal Mid-Gestation Cytokine Dysregulation in Mothers of Children with Autism Spectrum Disorder

Exploring Sensory Subgroups in Typical Development and Autism Spectrum Development Using Factor Mixture Modelling