Characteristics of Ethnically and Socioeconomically Diverse Underserved Families of Young Children with Autism

Background: Despite the importance of early intervention (EI) for children with autism spectrum disorders (ASD), many receive far below the recommended number of EI hours (Lord & Bishop, 2010). In addition, the majority of studies with children with autism have primarily included children from White middle-class backgrounds, despite similar prevalence rates of ASD across ethnically and economically diverse populations (Fombonne, 2005). Several studies have shown cultural, economic, and ethnic disparities in service provision, parental decisions about treatment, and the perceived negative impact of having a child with ASD (see Bishop et al., 2007). However, there remains a dearth of information about the characteristics of underserved families from diverse backgrounds, which is necessary to better understand their needs and effectively target intervention.

Objectives: This project aims to increase our understanding of the characteristics and concerns of diverse underserved families of young children with ASD, with the goal of informing interventions that address this population’s unique needs. Specifically, we explored family demographics (e.g., income, ethnicity, parental education, government assistance), EI (e.g., presence, weekly number of hours), parenting hassles, and family resources.

Methods: Data for this study are currently being collected from parents of approximately 30 young children with ASD who are being recruited as part of an on-going multi-site project focusing on parent-mediated intervention for 2-5 year old children with ASD. In order to be eligible for the study, families had to be receiving less than 15 hours of EI. Questionnaire data includes information on demographics, parenting hassles (Crnic & Greenberg, 1990), and family resources (Leet & Dunst, 1987).

Results: Preliminary analyses from the initial 21 families indicate an ethnically and socioeconomically diverse sample (71% ethnic minority; 57% on government assistance; median per capita income = $10,400; median parental education = some college). Higher income per capita, but not ethnicity, was associated with lower frequency (r = -.54, p < .05) and intensity of hassles (r = -.49, p < .05) and higher overall family resources (r = .46, p < .05). Forty percent of parents reported a “high” level of daily parenting hassles, with “managing children in public” and “children not listening” as the most highly rated. Most families reported having adequate basic necessities such as food, housing, and clothing, but reported a lack of social/leisure time and instrumental and emotional support.  Although all target children were receiving EI, the weekly number of hours was far below recommendations (Median = 3 hours, range 1-6 hours).

Conclusions: In summary, underserved families span a range of socioeconomic statuses, indicating the need for continued emphasis and provision of EI for all families. Although most families reported adequate daily necessities (e.g., housing, food), there is a need for interventions aimed at decreasing daily parenting hassles, increasing instrumental and emotional support, and helping families create time for social and leisure activities, particularly lower-income families. Future research should continue to examine characteristics of underserved families, particularly across geographic and regional areas in order to more fully understand and meet the needs of these families.