Parental Stress and Experienced Family Quality of Life in the Postdiagnostic Period

Background: The preschool years are rife with challenges for families of children with autism spectrum disorder (ASD). Indeed, the family unit must adjust to the child’s diagnosis and its practical implications, while also taking steps to access information and ASD services. The effectiveness of early intensive behavioral intervention (EIBI) programs on children’s functioning is well documented. However, EIBI can be time- and resource-consuming for parents and, when provided as a universal public service as in Québec, may incur excessive waiting periods. Some lower-intensity parent-mediated intervention programs present good social validity but may not directly impact children’s outcomes. Thus, it is unclear how the psychosocial difficulties reported by parents of children with ASD evolve as families enroll in these services.

Objectives: To track the experienced family quality of life (FQOL) and parenting stress in parents following their child’s formal ASD diagnosis, specifically over the course of EIBI and, for some families, a parent coaching and training program (PTCP) intended as waiting list intervention delivered in the year preceding EIBI.

Methods: Participants were 91 families of preschool-aged children (M = 46 months) with ASD deemed eligible to receive 10 to 20 hours of free EIBI services per week. Some families (n = 45) immediately received 1 year EIBI; the remaining families received PTCP (1 hour/week) for 1 year prior to EIBI. Every 12 months, parents completed the Beach Center FQOL scale and the Parenting Stress Index.

Results: Families in the PTCP+EIBI and EIBI-only groups presented comparable FQOL at intake. The group who participated in the PTCP initially experienced increases (d = .35) across all five dimensions of FQOL, F(1,46) = 6.645, p = .013, η²_partial = .13. These families then presented higher overall FQOL immediately before and after EIBI compared to the EIBI-only group (d = 0.50), F(1,85) = 5.451, p = .022, η²_partial = .06. Over the course of EIBI, FQOL levels remained relatively constant across both groups, with the exception of an increase in their satisfaction with Disability-related Support in the EIBI-only group (d = 0.49). Parenting stress increased during the PTCP, F(1,42) = 9.487, p = .004, η²_partial = .18, specifically for Parental Distress and Parent-Child Dysfunctional Interaction (d = 0.86, 0.84); at the same time, stress on the Difficult Child subscale decreased (d = -0.67). The reverse pattern was observed when this group received EIBI (d = -0.51, -0.40, and 0.47, respectively). In contrast, during this period the EIBI-only group experienced large increases in Parental Distress and Parent-Child Dysfunctional Interaction (d = 0.81, 1.31) while Difficult Child levels remained stable (d = -0.17).
Conclusions: Parent-mediated interventions intended to support families on a waiting list for EIBI appear helpful in alleviating some impacts of a child’s recent ASD diagnosis on FQOL; these benefits may persist as families access EIBI. While instrumental in improving children’s functioning, EIBI by itself may instead present an added source of stress during an already challenging period. Thus, postdiagnostic interventions that provide direct psychosocial support to parents should be considered.