“It’s like You’Ve Got to Do Everything on Your Own”: Latino Parents' Experiences of Traditional and Alternative Medicine for Their Children with Autism Spectrum Disorder in Los Angeles

Background:  Parents of children with autism spectrum disorders (ASD) have been found to rate their children’s primary care physicians as “not good” at addressing autism-specific needs (Carbone et al., 2013). Latino parents report even greater challenges than White parents in accessing high-quality healthcare for their children with ASD (Magana et al, 2012). Parents may choose complementary and alternative medicine (CAM) treatments for their children with ASD when they are dissatisfied with conventional healthcare, e.g. for failing to address autism-related issues such as sleep problems or self-injurious behavior (Akins, Angkustsiri, & Hansen, 2010). While Latino parents choose CAM treatments for their children with ASD at least as often as White parents (Hall & Riccio, 2012; Levy et al, 2003), little is known about how they experience their children’s healthcare services, either traditional or alternative.

Objectives:  The purpose of this qualitative study was to understand the barriers and supports that Latino parents of children with ASD experience while seeking traditional and alternative healthcare services for their children.

Methods:  This 12 month ethnographic study of 12 bilingual Latino families of children with ASD living in Los Angeles County was carried out in two phases. Phase 1: Two audio-recorded narrative interviews were conducted with 12 families (19 parents, 1 grandmother) about their experiences obtaining services for their children. After Phase 1, 6 families were from the original cohort were recruited using heterogeneity sampling to continue to Phase 2. Phase 2: Narrative interviews and participant observation were conducted with 6 families (11 parents) in home, clinic, school, and community contexts. Children’s health records provided data triangulation. The data corpus consists of almost 80 hours of audio- and video-recorded data (40 interviews, 10 observations, 60 fieldnotes) and 333 records. NVivo 10 software was used for coding, using a narrative analytic approach (Reissman, 2005).

Results:  All 12 families in the study utilized traditional healthcare to treat their child’s illnesses, but parents did not view their pediatricians as resources for addressing their children’s developmental and behavioral challenges. Parents reported feeling ‘on their own’ to learn about therapies and interventions. Six of the families (6 mothers, 4 fathers) utilized some form of CAM treatment for their children (e.g. diet modifications, vitamins, supplements, enzymes, Defeat Autism Now! doctors). These parents expressed frustration that their pediatricians were “hands off,” contrasted with CAM practitioners who were viewed as helpful because they targeted children’s development through “treatment plans,” i.e. recommendations and suggestions.

Conclusions:  The parents who chose CAM for their children with ASD viewed CAM providers as responsive, proactive, and optimistic in approaching children’s developmental challenges. While pediatricians may be legitimately cautious about discussing CAM treatments with parents because many of these therapeutic modalities have been found ineffective and even harmful, the parents in the study experienced such silence as a failure to provide guidance about their children’s development. These findings suggest that pediatricians can better meet families’ needs by engaging with and educating parents about the safety and efficacy of a range of conventional and alternative treatments.