Psychosocial Well-Being and Treatment Access in High Risk Families of Individuals with ASD

Background: Research suggests that a diagnosis of ASD has a profound psychosocial impact on the entire family unit (Baker-Ericzen et al., 2005). ASD- specific social communication and behavioral impairments introduce a pervasive family stress that is maintained over a lifetime (Conway & Meyer, 2008; Hastings, 2003). While the salience may change over time, both parents and siblings of individuals with ASD are considered more vulnerable to negative psychosocial outcomes, including symptoms of anxiety and depression (Dunn et al., 2001; Tudor & Lerner, 2015). In this way, all families are at some level of risk, and are in need of individualized treatment and support. While the literature has begun to identify factors that predict family member outcome, little attention has been paid to the interaction between an ASD diagnosis and a family history of psychosocial risk. Risk may include, for example, family members with a concurrent or pre-existing psychiatric condition. Given the prevalence of these behavioral diagnoses in the general population, it is crucial for researchers and service providers to better characterize the needs of this high risk group.

Objectives: This study aims to identify 1) the psychosocial functioning of “high risk” families, 2) the treatment wants and needs of this population, and 3) factors that may contribute to further risk or difficulty accessing treatment.

Methods: Families of individuals with ASD were distributed an online survey through the Qualtrics platform. Participants in the survey were parents across the U.S. who had one child with ASD and at least one typically developing child. ASD diagnosis was confirmed by the GARS-3 (Gilliam, 1995), and typical sibling development was confirmed by parent report. Parents were also asked to rate their own psychosocial well-being (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 treatment questionnaire, inquiring about past service access, future service interest, and barriers to treatment for parents and siblings. Importantly, parents reported service access on behalf of their TD child.

Results: Of the 158 total families who completed the survey, 32 were considered to be “high risk,” defined by parent endorsement of a developmental or learning disability, or major psychiatric condition in themselves or their TD child. Several group-based differences were identified between the “high risk (HR)” and “low risk (LR)” groups. Families in the HR group were significantly more diverse with regard to racial and ethnic identification. Further, these parents reported significantly lower ISSB scores and higher GARS-3 severity scores than the LR group. While parents in the overall sample reported a generally positive view of treatment services aimed at families, individuals in the HR group endorsed less service engagement in the past, and less interest in future support services than LR families. Groups also differed with regard to factors that facilitate treatment access, with the HR families citing time and financial resources as significant barriers to treatment, while these factors were not significant predictors in the LR group.

Conclusions: Implications of these differences will be discussed further.