Quality of Life of Parents of Children with ASD: From Adolescence to Early Adulthood.

Background:  Autism spectrum disorders (ASD) are lifelong disorders, potentially impacting the parental quality of life (QoL) in a persistent manner. The transition period from adolescence to adulthood has been reported as a time of confusion and stress for families of people with developmental disabilities. When entering adulthood, most people with ASD still need a consequent support in their daily life and parents have to face significant life adjustments such as finding new services and a place of living for their child with ASD. However, there are very few studies about the transition from adolescence to adulthood in ASD and its impact on parental QoL.

Objectives:  The goals of this study were to describe parental QoL in the EpiTED cohort and its related risk factors at early adulthood. We also examined the determinants and predictors of QoL in the subgroup of parents who experienced an improvement or a decline in their QoL from adolescence to adulthood ASD and its impact on parental QoL.

Methods:  One hundred and six mothers or fathers of young adults with ASD completed the Par-DD-QoL scale at two time points: during adolescence (mean age = 15 years) and young adulthood (mean age = 20 years). This scale assesses the following dimensions: emotional, daily disturbance and global QoL. Adaptive skills, aberrant behaviors, symptom severity, as well as environmental variables (social support, type of interventions, scholarship) were also assessed at the two collection time points. This cross sectional study uses a subset of data collected at the last two times of a follow-up study (EpiTED cohort).

Results:  Results show that parental QoL is altered or moderately altered in two third of parents, suggesting that the impact of ASD on families remains strong even when children become adults. The perceived impact of ASD on parental QoL at adulthood was related to their children’s characteristics, namely the level of adaptive skills, the severity of symptomatology and the presence of challenging behaviors. The polytomic regression demonstrated that challenging behaviors were the main risk factors for a decreased parental QoL, particularly the lethargy/withdrawal, irritability, and hyperactivity domains. Among the 106 parents, 54 experienced a gain or a loss in their global QoL over the 5 years period. Results showed that parents whose children had a decrease in challenging behaviors experienced a gain in their QoL, suggesting that, when entering adulthood, challenging behaviors are the strongest predictor of parental QoL. Another interesting result is that parents who experienced a gain in their QoL were more likely to be members of a parental association, which is a substantial form of social support.

Conclusions: Overall, the changes in parental QoL from adolescence to adulthood were mainly predicted by the presence of challenging behaviors in their children and the social support they can find. These results argue for the importance to propose specific interventions to target associated challenging behaviors in ASD and to provide social support to families.