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Latino parents’ perspectives on barriers to autism diagnosis
Open accessAbstract
Objective Latino children are diagnosed with autism spectrum disorders (ASDs) at older ages and at the point of more severe symptoms. We sought to qualitatively describe community, family, and health care system barriers to ASD diagnosis in Latino children.Methods Five focus groups and 4 qualitative interviews were conducted with 33 parents of Latino children previously diagnosed with an ASD. Participants described Latino community perceptions of autism and barriers they experienced during the diagnostic process. Sessions were audiorecorded and transcribed. Transcripts were coded by 2 researchers, and data were analyzed using thematic analysis.Results Parents reported low levels of ASD information and high levels of mental health and disability stigma in the Latino community. Parents had poor access to care as a result of poverty, limited English proficiency, and lack of empowerment to take advantage of services. Providers sometimes dismissed parents' concerns. The ASD diagnostic process itself was slow, inconvenient, confusing, and uncomfortable for the child. These factors led many parents to normalize their child's early behaviors, deny that a problem existed, and lose trust in the medical system.Conclusions Additional educational outreach to Latino families, destigmatization of ASD, streamlining the ASD diagnostic process, and providing additional support to Latino parents of at-risk children may decrease delays in ASD diagnosis among Latino children.
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“The CDC checklists support developmental surveillance and other important components of the early identification process by pediatricians and other ECPs, including developmental promotion, parent education and engagement, communication of developmental progress and concerns, and developmental screening.7,5,9,72–75”
From Evidence-Informed Milestones for Developmental Surveillance Tools (2022) · cites this paper as [74]
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“For the Hispanic population, studies have identified lack of awareness of ASD, stigma associated with disability, lack of access to health care services due to noncitizenship or low income, and language barriers as factors that might reduce the identification of ASD among Hispanic children (31–35).”
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Metadata
- Authors
- Zuckerman, K. E., Sinche, B., Mejia, A., Cobian, M., Becker, T., & Nicolaidis, C.
- Affiliations
- Oregon Health & Science University (US)
- Pacific University Oregon (US)
- Portland State University (US)
- Corresponding author
- Zuckerman, Katharine E.
- Venue
- Academic Pediatrics
- Publisher
- Elsevier BV
- Published
- 2014-05
- Volume
- 14
- Issue
- 3
- Pages
- 301-308
- ISSN
- 1876-2859 (ISSN-L)
- PMC
- PMC4006363
- OpenAlex
- W2091608490
- Cited by
- 335
- References
- 37
- Citations by year
- 2026: 93 · 2025: 31 · 2024: 32 · 2023: 33 · 2022: 34 · 2021: 23 · 2020: 29 · 2019: 19 · 2018: 13 · 2017: 15 · 2016: 8 · 2015: 4 · 2014: 1
- FWCI
- 5.20
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Academic Pediatrics (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- PDXScholar (Portland State University) (submittedVersion)
- Funders
- Commonwealth Fund
- Oregon Health and Science University
- Academic Pediatric Association
- Centers for Disease Control and Prevention
- National Institute of Mental Health (K23MH095828)
- Topics
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Health Sciences › Medicine › Psychiatry and Mental health › Child Nutrition and Feeding Issues
- Keywords
- autism spectrum disorder, Latino children, autism diagnosis, delayed diagnosis, parental attitudes, barriers to care, stigma, mental health stigma, disability stigma, limited English proficiency, health care access, poverty, trust in healthcare, health disparities
- MeSH terms
- Adult, Child, Child Development Disorders, Pervasive, Child, Preschool, Female, Health Services Accessibility, Hispanic or Latino, Humans, Income, Health Knowledge, Attitudes, Practice, Male, Parents, Physician-Patient Relations, Qualitative Research, Young Adult, Delayed Diagnosis, Social Stigma
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