Conceptualization of Autism in the Latino Community and its Relationship With Early Diagnosis

Abstract

Objective Early identification of autism spectrum disorders (ASD) has been linked to improved long-term developmental outcomes. However, Latino children are diagnosed later than white non-Latino children. We aimed to qualitatively assess the understanding and conceptualization of ASD in the Latino community in order to understand potential community barriers to early diagnosis. Method We conducted 5 focus groups and 4 qualitative interviews with 30 parents of typically-developing Latino children in Oregon. Participants were asked structured questions concerning video vignettes that follow a Latina mother from the time she begins to worry about her 3-year-old son's behaviors to the time he receives an ASD diagnosis. Focus groups and interviews were audio-recorded, transcribed and independently coded. Coded data were analyzed using thematic analysis. Results Many Latino families in the study had not heard of ASD or had little information about it. Families sometimes assumed ASD red flags were normal or could be attributed to family dysfunction. Families also had concerns about provider communication and access to language services. Having a child with a developmental delay was associated with embarrassment, rejection, and family burden, making it difficult for parents to raise developmental concerns with providers. Conclusion Pediatric providers should not assume that Latino parents have heard of ASD or know its symptoms. Providers should be aware that parents may be reluctant to mention concerns due to cultural factors. The health care system needs to improve resources for Latino parents with limited English proficiency. Policies should encourage the use of developmental screening in primary care.

Parent Beliefs About the Causes of Learning and Developmental Problems Among Children With Autism Spectrum Disorder: Results From a National Survey

“…In particular, families of lower socioeconomic status may know less about genetics, and/or health care and educational providers may also provide less information about genetics to these families when discussing ASD. Overall, our results support prior reports suggesting that family socioeconomic background may play an important role in how families interpret their child’s developmental problems (Mandell & Novak, 2005; Zuckerman et al, 2014). …”

“…However, parental beliefs regarding the cause of pediatric conditions are relevant, as these beliefs may affect how parents communicate with providers. For instance, if parents do not see ASD as a medical condition, they may be less likely to view the child’s diagnosis in a medical context, and therefore be less likely to raise it with medical staff (Zuckerman et al, 2014). Parental beliefs might also alter how parents view their child overall as well as their own personal roles or responsibilities for his/her condition.…”

A comparison of the ASD experience of low‐SES hispanic and non‐hispanic white parents

“…Several mothers stated that the paperwork was provided to them in English; and furthermore, their doctors did not speak Spanish. This is similar to other research where language is a barrier [Mandell & Novak, 2005;Zuckerman et al, 2013;Zuckerman et al, 2014aZuckerman et al, , 2014b.…”

Autism spectrum disorder: advances in diagnosis and evaluation

“…Some authors have suggested that some families, by virtue of their ethnicity, are less familiar with the early manifestations of ASD200 or ascribe a different meaning to atypical behaviors or late milestones within their cultural context,201 and that this may contribute to delays in diagnosis. However, other studies have examined the broader context by which ethnicity and cultural matters may contribute to variations in care and lived experience in relation to the diagnosis of ASD.…”