First Concerns Among Latino Parents of Children with Autism Spectrum Disorder

Background:  

Autism spectrum disorders (ASDs) are neurodevelopmental disorders that are estimated to affect 1 in 67 children in the U.S. Typically, diagnosis is made at 3 or 4 years although it is believed that reliable diagnoses can be made as early as 2 years. Unfortunately, studies show that African American and Latino children are under-diagnosed and when diagnosed, receive a later diagnosis than White children. It is believed that earlier recognition and diagnosis leads to improved child outcomes due to enrollment in early intervention services to address speech/language, cognitive, social, and self-help skills. There is some evidence that first concerns expressed by parents about their children are important factors in early diagnosis. However, little is known about the first concerns expressed by Latino parents of children with ASD. 

Objectives:  

Our research questions for this study are: 1) what are the first concerns of Latino parents of children with ASD and developmental disabilities (DD)?, and 2) how do first concerns differ between Latino parents of children with ASD compared to parents of children with other DDs?

Methods:  

We analyzed qualitative responses from 27 Latino parents of children with ASD (n=18) and other DDs (n=9).  Each of the authors reviewed the transcripts independently and identified themes in response to our 2 research questions.  We then met to agree upon working definitions of themes and proceeded to recode transcripts independently.  When saturation was achieved, the authors reviewed the coded transcripts and reached agreement.  

Results:  

Five categories emerged from our analysis: communication concerns, behavior or temperament concerns, social concerns, concerns about physical milestones, and sensory concerns.  The vast majority of parents expressed first concerns about communication or language challenges of their children regardless of whether they had ASD or another DD.  However, parents of children with ASD had more concerns about problem behaviors and social development.  Surprisingly, the parents of children with other DD had more concerns about sensory issues than the parents of children with ASD in our sample.

Conclusions:  

Our findings are consistent with the literature on first concerns (based primarily on White parents of children with ASD).  Our results suggest that it is important that pediatricians and health care providers respond appropriately to parent’s first concerns about their children’s development (i.e., conduct screenings, make referrals for evaluation), particularly when there is a concern about language. Children whose parents also express concerns about social and behavioral issues may especially warrant screening for ASD.