Evaluating Patterns of Service Access and Interest in Families of Individuals with ASD

Background: The literature on family psychosocial outcome suggests that parents of individuals with ASD are at an increased risk of developing negative health outcomes, including anxiety and depression (Dunn et al., 2001). While the sibling outcome literature is more mixed, typically developing (TD) siblings may also be at an increased risk for psychosocial difficulties (Verte et al., 2003), with parent stress acting as a mediating factor (Meyer et al., 2011). Services for families are important to ensure their health and wellbeing, as well as their ability to be effective caretakers for individuals with ASD. Research on family support has several limitations, including fundamental difficulties with recruitment and retention of parents and siblings in projects aimed at family support (Ferraioli & Harris, 2013). Understanding the service interests of families, as well as factors predicting treatment access, is crucial in order to better serve families in the future.

Objectives: This study aims to identify 1) what support/services families are interested in, 2) what factors limit service access, and 3) what factors facilitate service access for this population.

Methods: An online survey was distributed to 158 families of individuals with ASD across the U.S. Families were recruited through a university-based program for individuals with ASD as well as ASD service and support networks. Respondents to the survey were parents who had one child with ASD and at least one TD child, per parent report. Parents filled out a series of questionnaires to measure ASD symptom severity (GARS-3; Gilliam, 1995), parent psychosocial health (GHQ-28; Goldberg, 1978), parent stress (PSI-4-SF; Abidin, 1995), and perceived social support (ISSB; Barrera et al., 1981). Participants were also given a family support questionnaire, inquiring about parent and sibling access to a set of 13 support services.

Results: Participants in the sample were largely women (59.5%), married (94.9%), White (85.4%), Non-Hispanic (85.4%), and had a Bachelor’s level education (62.7%). Results suggest that parents have accessed support services for themselves (M=8.23) and for their TD child (M=7.38) in the past, and endorse a positive view of these services. A greater number of past services accessed was associated with the absence of a diagnosed psychiatric condition in the parent or sibling, higher severity scores on the GARS-3, lower scores of anxiety on the GHQ-28, increased social support on the ISSB, and increased parent stress as measured by the PSI. Family demographic variables (e.g., parent and child gender, child age, etc.) were also found to be related to service access. Descriptive information regarding interest in individual service type will be discussed, as well as models of service prediction.

Conclusions: Parents endorsed having accessed a range of services for themselves and their TD child. Certain individual and family-level variables were found to be significantly related to treatment access. Understanding factors that limit and facilitate treatment access can help guide clinical and research approach to family support. Future directions include replicating results in a more diverse sample, and investigating strategies for making services more accessible to families (e.g., integrating family support into ASD services).