Quality of Life in Families of Young Children with Autism Spectrum Disorder: Three-Year Follow-up

Background: Families of children with autism spectrum disorder (ASD) are particularly vulnerable to challenges throughout the educational and care trajectory for their child. Additionally, previous studies show that parental programs offered during early childhood seems to have minimal impacts on parental mental health. All together, these situations suggest that family quality of life (FQOL) may be particular poor in these families during this period marked by elevated stress. In the following years, these families will have to cope with the diagnosis of their child (diagnosis period), reach out for the services (waiting period), adapt to early childhood intervention program for ASD, and adjust to their child’s transition to school.

Objectives: To examine how parents of young children with ASD’s experience of FQOL evolves over the course of three years following their registration to receive early intervention services: the 1) diagnosis and waiting; 2) early childhood intervention; and 3) integration into school periods.

Methods: Data were collected from 264 families of preschool-aged children (M = 45.9 months) with ASD. At the beginning of the study, these families had requested, but not received, free EIBI services from a public rehabilitation center in the province of Québec, Canada. These families subsequently received the center’s most intensive service (20 hours per week, N = 55), a similar moderate-intensity intervention (4-10 horus per week, N = 94), or a low-intensity parent-mediated intervention and weekly coaching (1 hour per week, N = 115) for a one-year period. Once per year, 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, FQOL, and particularly families’ satisfaction with family interactions, emotional well-being, and disability support, tended to increase over the year during which they received interventions. FQOL tended to increase more consistently with increase of intensity programs, but not in the high-intensity group, who only reported higher disability-related support. The 30 families who completed the third-year follow-up, corresponding to the child’s enrollment in school, reported a decrease in satisfaction with disability-related support, which had returned to pre-intervention levels.

Conclusions: During the period in which they received free services from a rehabilitation center, families of young children with ASD tended to experience increased FQOL compared to the intake period. These gains tend to be maintained the year following the cessation of these services, but may not persist as the child begins school. Gains in FQOL appeared restricted to families of children with less severe clinical profiles, with the exception of disability-related support.