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A Systematic Review of Help-Seeking Barriers for Racial-Ethnic Minority Caregivers Accessing Autism Diagnostic and Intervention Services.

Amani Khalil·Jane Yatcilla·Niamh Christie·Xiang Zhou
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Abstract

Caregivers play an essential role in early help-seeking and intervention for children with Autism Spectrum Disorder (ASD). Caregivers, therefore, provide a crucial role in helping to address the racial and ethnic disparity identified in accessing ASD intervention and diagnostic services (Bejarano-Martín et al., Journal of Autism and Developmental Disorders 50(9), 3380-3394, 2020). Unfortunately, racial-ethnic minority caregivers of children with autism (CCA) are less likely to contact a physician or healthcare professionals about their concerns and more likely to delay their contact to have their child evaluated (Zeleke et al., Journal of Autism and Developmental Disorders 49(10), 4320-4331, 2019). However, little evidence exists to explain why such a gap exists in the help-seeking behaviors between White and racial-ethnic minority CCA. To address this knowledge gap, we conducted a systematic literature review to identify articles that have studied barriers in help-seeking for racial-ethnic minority CCA. A broad literature search across four databases was conducted (i.e., PubMed, PsycINFO, Education Resources Information Center, and Child Development and Adolescent Studies). The coding team identified 17 articles on help-seeking barriers for racial-ethnic minority CCA. A thematic analysis was used to narratively synthesize the help-seeking barriers identified across these 17 studies. Four themes emerged from our findings: logistical barriers, provider competence, ASD literacy, and cultural stigma. We also provided clinical recommendations for healthcare providers working with families with racial-ethnic minority CCA.

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HumansMinority GroupsCaregiversAutism Spectrum DisorderHealth Services AccessibilityEthnicityChildHelp-Seeking BehaviorPatient Acceptance of Health CareHealthcare DisparitiesRacial GroupsAutismAutism diagnosisAutsim interventionDevelopmental disabilitiesDevelopmental disabilitiesHealth disparitiesHelp-seeking barriersRacial minority parentsJournal ArticleSystematic ReviewResearch Support, Non-U.S. Gov't

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Amani Khalil, Jane Yatcilla, Niamh Christie, Xiang Zhou. 2025-08-05. A Systematic Review of Help-Seeking Barriers for Racial-Ethnic Minority Caregivers Accessing Autism Diagnostic and Intervention Services.. https://doi.org/10.1007/s40615-025-02555-x

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Autism spectrum disorder subjectChild subjectEthnicity subjectHealth Services Accessibility subjectHealth disparities subjectHelp-Seeking Behavior subjectHumans subjectJournal Article subjectJournal Article; Systematic Review; Research Support, Non-U.S. Gov't resourceMinority Groups subjectPatient Acceptance of Health Care subjectSystematic reviews study

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