Factors Influencing Parental Decisions about Early Treatments for Autism Spectrum Disorders

Background & Purpose

With prevalence rates for Autism Spectrum Disorder (ASD) at an all-time high (CDC, 2014) the importance of understanding how parents make decisions about services and supports for their young children with ASD is greater than ever.  Decisions about which interventions to pursue are driven by a combination of parent-, child-, and service-related factors (Hebert, 2014).  High costs of interventionsn place many families in challenging fiscal circumstances (Resch et al., 2010). In terms of service access, Mandell and colleagues (2002) found that African American children gained access to ASD-related interventions later than their Caucasian peers, while Thomas and colleagues (2007) suggested that children residing in rural communities have greater difficulties finding appropriate ASD services than children from metropolitan areas. This sequential mixed-methods study investigated the following central research question: What factors shape caregivers’ decisions about which interventions to pursue for their young children with ASD?

Methods

The first phase of this study involved a qualitative interview study that included 17 family caregivers of children with ASD who had received a medical diagnosis of ASD within the three months prior to their participation. Of note, 59% of participants identified as African American or multiple race, and 53% reported household income less than $25,000, demographic factors that are largely underrepresented in ASD research. A conventional qualitative content analysis yielded results that informed the study’s second phase.

The second phase involved a statewide survey of caregivers of young children recently diagnosed with ASD (n=205). The survey was electronically disseminated through multiple advocacy and networking organizations, and included sections about the people and materials that influenced the respondent’s decisions on which treatments to pursue, as well as a section on the magnitude to which each of those influences was important. The list of potential influences was derived from the literature and the results of the qualitative study.

Results

Results of the qualitative content analysis suggested that out-of-pocket cost, geographic accessibility of a service, waitlists, suggestions of primary pediatricians, and frequency of intervention all played a role in shaping decisions about initial treatments. Survey results largely corroborated the qualitative findings. Pediatricians and other parents of children with ASD were most frequently cited at strong influences on treatment decisions. One-way ANOVAs suggested that importance of out-of-pocket cost of a service varied based on a participant’s income, with Tukey HSD post-hoc tests indicating that families with lower incomes placed more emphasis on incurred cost than did more affluent families. Families from rural parts of the state were statistically more concerned with the geographic accessibility of a services compared to those living in urban or suburban areas. Results of linear regression models will also be presented.

Implications

These results suggest the importance of tailoring early interventions for children with ASD to the specific needs of a family. Respondents suggested that service providers play an important role in shaping their treatment decisions, so professionals should seek to understand the particular needs and constraints of each family, rather than defaulting to standard treatment recommendations.