Quality of Life in Families of Young Children with Autism Spectrum Disorder at Intake

Background: Families of children with autism spectrum disorder (ASD) experience greater psychosocial difficulties than parents of typically developing children or children with other developmental disorders. In particular, the early childhood period poses unique challenges as parents come to terms with their child’s recent diagnosis, make adjustments to the family’s day-to-day life and activities, and begin to seek out services. Studies to date have identified socioeconomic, family-related, and child-related variables associated with family quality of life (FQOL) and other parent outcomes (e.g., parenting stress, mental health), but these have tended to focus on families of children who were older (e.g., school-aged or adolescent) and were receiving some form of intervention or external support.

Objectives: To report on, and identify predictors of, FQOL among families of young children with ASD following the child’s former diagnosis, but prior to receiving early behavioral intervention.

Methods: Data were collected from 277 families (271 mothers, 222 fathers) of preschool-aged children (M = 45.9 months) with ASD. At the time of the study, these families had requested, but not received, free EIBI services from a public rehabilitation center in the province of Québec, Canada. Parents completed the Beach Center FQOL scale and standardized measures of the child’s adaptive behavior, autism severity, and executive function. The child also completed a standardized assessment of intellectual functioning, and a caregiver rated the child’s socioaffective competencies.

Results:

Overall, parents’ satisfaction with their FQOL was relatively neutral (i.e., 3.66–3.70 on a scale of 1 to 5, M = 3.65). There were no salient differences between mothers’ and fathers’ FQOL levels. Families were most satisfied with their physical and material well-being and disability-related support, respectively, moderately satisfied with parenting and emotional well-being, and least satisfied with family interactions. Household income and mothers’ employment were positively associated with FQOL. Reliance on, and perceived availability of, social support (primarily from the extended family) was also predictive of FQOL. While autism severity, executive functioning, adaptive behaviors and parents’ subjective appraisal of their child’s overall level of functioning were associated with FQOL, regression analyses indicated that adaptive behavior are a more robust predictor of mothers’ FQOL, while autism severity was predictive of some aspects of fathers’ FQOL.

Conclusions:: In contrast to previously examined populations, parents of young children with ASD who have taken steps to eventually receive free EIBI services for their child express relatively high satisfaction with their financial stability and support services. However, during the post-diagnosis period, they may benefit from low-intensity interventions that aim to improve interactions within the family and equip parents to respond to some salient features of their child’s condition. To the extent social support is particularly important during this period, outreach and intervention efforts should aim to include other family members, particularly grandparents. By improving FQOL for these families, such interventions may ensure better parental compliance with, and effectiveness of, EIBI.