Katharine E Zuckerman1, Brianna Sinche2, Angie Mejia3, Martiza Cobian4, Thomas Becker5, Christina Nicolaidis6. 1. Child and Adolescent Health Measurement Initiative, Oregon Health & Science University, Portland, Ore; Division of General Pediatrics, Oregon Health & Science University, Portland, Ore. Electronic address: zuckerma@ohsu.edu. 2. Child and Adolescent Health Measurement Initiative, Oregon Health & Science University, Portland, Ore. 3. Child and Adolescent Health Measurement Initiative, Oregon Health & Science University, Portland, Ore; Department of Sociology, Syracuse University, Syracuse, NY. 4. Child and Adolescent Health Measurement Initiative, Oregon Health & Science University, Portland, Ore; Department of Psychology, Pacific University, Hillsboro, Ore. 5. Department of Public Health and Preventive Medicine, Oregon Health & Science University, Portland, Ore. 6. Department of Public Health and Preventive Medicine, Oregon Health & Science University, Portland, Ore; Department of Internal Medicine and Geriatrics, Oregon Health & Science University, Portland, Ore; School of Social Work, Portland State University, Portland, Ore.
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.
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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