Latino Families’ Experiences of their Children with Autism Spectrum Disorder Using School District Transportation: Implications for Transportation Mobility and Participation

Key words: Autism, transportation mobility, participation Purpose: The purpose of this study was to understand how Latino families of children with autism spectrum disorder (ASD) experience their children’s ASD services. The issue of children’s safety while on school buses loomed large in the data. Methods: This 12-month ethnographic study explored the experiences of 12 bilingual Latino families of children with ASD in Los Angeles County. The study was carried out in two phases between May 2014 and May 2015. Phase 1 (3 months) consisted of two narrative interviews with 12 families to identify their processes of obtaining services for their children. After Phase 1, 6 of these families were recruited using heterogeneity sampling. Phase 2 (9 months) consisted of narrative interviews; observations in home, community, clinic, and school settings; and review of children’s health records. The data corpus consists of almost 80 hours of audio- and video-recorded data. All data were transcribed verbatim and coded using NVivo10 software. The analytic approach was twofold: 1) Narrative analysis (Reissman, 1993), which is used to identify and interpret how parents assigned meaning to their experence; and 2) Critical discourse analysis (Wodak, 2004), which critically examines a discourse of ‘independence’ used by professionals, situating it within a broader political economy. Results: Parents’ experiences with school buses reflected deeper meanings, including their future hopes for their children’s independence. Two cases of children who were ‘lost,’ unaccounted for while under the care of the school district transportation department, illuminate 1) the significant cost of parents’ broken trust when they doubt their children’s safety while at school, and 2) the tension parents experience between a desire for their children’s independence and safety. School district personnel emphasized children’s ‘independence,’ reflecting a neoliberal ideology of “no legitimate dependency” (Peacock, Bissell, & Owen, 2014) and drawing on stereotypes of Latino parents as ‘overprotective.’ Parents faced a dilemma in wanting to support their children’s independence and be seen as ‘good parents’ (Angell & Solomon, 2014), and wanting to ensure the safety of their young children traveling without them. Conclusion: Findings point to a need and opportunity for occupational science to reconceptualize transportation mobility for individuals with ASD. Further research should consider the perspectives of individuals with ASD and their families and recognize the critical need for innovative solutions to support both independence and safety of children and adults with ASD while moving through their communities, increasing their participation and inclusion. Questions How have ‘transportation mobility’ and ‘participation’ been conceptualized in occupational science? What are the strengths of occupational science conceptualization of these concepts? In what ways do these concepts need to be ‘reconceptualized,’ according to this ethnographic data? What direction should future occupational science research in these areas take