Family Quality of Life: Impact of Parent Understanding and Perceptions of Autism Spectrum Disorder.

Background:

Unlike many developmental disabilities (e.g., Down syndrome, fragile x syndrome) autism spectrum disorder (ASD) does not have a known universal genetic underpinning. As a result, parents may be less likely to have a firm understanding of the roots of their child’s strengths and challenges. In fact, studies show that a genetic diagnosis gives validation and credibility to their child’s needs (Makela et al., 2009), and family quality of life (QOL) is directly impacted by feelings of uncertainty (McStay, Trembath, & Dissanayake, 2014). It is well documented that compared to families with typically developing children and children with other neurodevelopmental disorders, families of children with ASD are less satisfied with their QOL (Gardiner & Iarocci, 2015). Bayat (2005) found that families that perceived positive effects of autism (e.g., family cohesion), most strongly predicted QOL. However, there is a paucity of literature exploring how autism severity influences the relationship between parent understanding of their child’s disability and family QOL. The present study aims to explore this relationship.

Objectives:

The purpose of the present study is to examine QOL of families waitlisted for a parent-coaching intervention shortly after receiving an initial diagnosis. Specifically, family QOL will be explored as a function of parent perceptions of autism severity (measured by the impact of autism symptoms on everyday life via the Autism Impact Measure), and whether this relationship was moderated by parent understanding of their child’s disability-related needs and strengths.

Methods:

30 families (n = 15 collected; n = 15 enrolled by March 2017) of children with ASD enrolled in early intervention were asked to complete questionnaires about family QOL and the impact of autism on their family's everyday life, among other measures in a larger research battery. Four items from the ECO Family Outcomes Survey (Bailey et al., 2011), were summed together as a measure of parent understanding of their child’s strengths, abilities, delays, and/or needs. Two subscales of the Family Quality of Life Survey (Hoffman, Marquis, Poston, Summers, & Turnbull, 2006) were included to assess factors related to family interactions and parenting. Families also completed the Autism Impact Measure (Kanne, et al., 2014), to measure parent perceptions of the impact of their child’s autism symptoms. Measures of child development and social functioning were also collected.

Results:

Based on existing literature, we hypothesize that parent understanding will be a contributing factor to family QOL, in addition to autism severity (i.e., impact on everyday functioning). Exploratory analyses will be used to determine how parent perceptions of autism symptoms predict family QOL and how this relationship is influenced by parent understanding of their child’s disability-related needs and strengths.

Conclusions:

Results from the present study will highlight the importance of considering parent understanding of their child’s disability on QOL. Findings will also emphasize the importance of educating families about ASD as a part of the intervention in order to potentially facilitate greater family QOL. Future directions include examining this relationship post-intervention as well as further exploring differences among families from varying ethnic and socioeconomic backgrounds.