TY - JOUR
T1 - Latino parents' perspectives on barriers to autism diagnosis
AU - Zuckerman, Katharine E.
AU - Sinche, Brianna
AU - Mejia, Angie
AU - Cobian, Martiza
AU - Becker, Thomas
AU - Nicolaidis, Christina
N1 - Funding Information:
The authors would like to acknowledge Drs Ellen Lipstein and Somnath Saha for their guidance regarding qualitative methods; Dr Christina Bethell for material support; Teresa Gomez and the OHSU Autism Clinic staff for help in recruitment; and Susie Larios and Eréndira Valdivia for their helpful perspectives and assistance with data analysis. Funded by grant 1K23MH095828 from the National Institute of Mental Health (PI = Zuckerman); partially funded by an Academic Pediatric Association/Commonwealth Fund Young Investigator Award (PI = Zuckerman).
PY - 2014
Y1 - 2014
N2 - 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.
AB - 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.
KW - Autism spectrum disorder
KW - Hispanic Americans
KW - delayed diagnosis
KW - health ses accessibility
KW - qualitative research
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U2 - 10.1016/j.acap.2013.12.004
DO - 10.1016/j.acap.2013.12.004
M3 - Article
C2 - 24767783
AN - SCOPUS:84899535457
SN - 1876-2859
VL - 14
SP - 301
EP - 308
JO - Academic Pediatrics
JF - Academic Pediatrics
IS - 3
ER -