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Cited by 335Autism Spectrum Disorder ResearchFamily and Disability Support ResearchChild Nutrition and Feeding Issues

Latino parents’ perspectives on barriers to autism diagnosis

Open access
Zuckerman, Katharine E., Sinche, Brianna, Mejia, Angie, Cobian, Martiza, Becker, Thomas, Nicolaidis, Christina·2014·Academic Pediatrics
DOI 10.1016/j.acap.2013.12.004PMC PMC4006363
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Abstract

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 early childhood professionals, including developmental promotion, parent education and engagement, communication of developmental progress and concerns, and developmental screening.

    “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]

    The Discussion (page unavailable) says the CDC’s “Learn the Signs. Act Early” materials could help Latino families recognize early signs of autism. It also recommends explaining screening to parents and screening for autism in primary care. It does not identify CDC checklists or say they support the full range of surveillance, developmental promotion, progress communication, and screening activities attributed to them. (LLM, conf=0.82)

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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 identification of ASD among Hispanic children.

    “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).”

    From Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2012 (2016) · cites this paper as [35]

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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.
ORCID
Venue
Academic Pediatrics
Publisher
Elsevier BV
Published
2014-05
Volume
14
Issue
3
Pages
301-308
ISSN
1876-2859 (ISSN-L)
DOI
10.1016/j.acap.2013.12.004
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
Licence
www.elsevier.com/tdm/userlicense/1.0/ (tdm)
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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