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The impact of ASD on parental QOL was evaluated in the EpiTED cohort study at early adulthood. Two-third of parents of young adults with ASD (66.7%) reported that their QoL was at least moderately altered. The perceived impact of ASD on parental QoL was related to the young adults' level of adaptive skills, as well as to symptom severity and the presence of challenging behaviors, which appeared to be the main risk factor. The study of change between adolescence and early adulthood showed that parents whose children had a decrease in challenging behaviors perceived a decreased impact on their QoL. These results argue for the importance to propose specific interventions to target associated challenging behaviors in ASD.

Purpose: To study the impact of autism spectrum disorders (ASDs) on parental quality of life (QoL) at adolescence using the parental-developmental disorders-quality of life scale (Par-DD-QoL)., Methods: One hundred and fifty-two mothers of adolescents with ASD completed Par-DD-QoL. This scale assesses the following dimensions: emotional, daily disturbance and global QoL. This cross-sectional study uses a subset of data collected at the final time of a follow-up study (EpiTED cohort)., Results: A polytomic regression identified an increase in aberrant behavior scores as the major independent risk factor for parental QoL. The identified protective factors were the increase in daily living, communication and object cognition scores and a higher number of siblings., Conclusions: Those results suggest that there is a negative effect of externalizing behaviors and a protective effect of adaptive skills, communication and object cognition on parental QoL. Study limitations and implications are discussed.

This study focused on parents' satisfaction with the special education and care services proposed to their child with autism spectrum disorders (ASD). Data were collected in three regions of France, using a questionnaire designed for the purpose of this study. Among the 530 families contacted, 212 filled in the questionnaire (response rate = 40.8%). Results showed that parents were globally satisfied with providers' involvement and motivation, but they felt they were not involved enough in their child's individualized program, that communication with providers was insufficient and that the services lacked ASD's specific tools and interventions. Among all families interviewed, parents of adolescents were the most unsatisfied and we hypothesized that this could be due to the specific issues regarding developmental changes and concern about the future at this period of life. Congruently with the literature, variables related to parental overall satisfaction were a regular communication with professionals, a specific, regularly updated individual program in which parents are associated, and specialized tools and interventions. The implications of these findings are discussed as well as future directions for clinicians to improve service delivery and allow the persons with ASD and their families to be more involved in the services.

Background Self-injurious behaviours ( SIB) are highly prevalent in individuals with autism spectrum disorders ( ASD) and have deleterious effects on the individual and their environment. The aim of this study was to examine SIB prevalence and associated features in a population of 152 adolescents with ASD and to determine risk factors for SIB. Methods The present study uses a subset of data of a longitudinal follow-up of 152 children with ASD. The presence of a low or high level of self-injury was assessed at adolescence through the Aberrant Behaviour Checklist completed by parents. Clinical and social variables regarding severity of autism symptoms, psychological development, adaptive behaviours, parental quality of life and total intervention time were collected during childhood (mean age = 5 years, SD = 1.6) and at adolescence (mean age = 15 years, SD = 1.3). Results About 35.8% of adolescents with ASD in our sample displayed self-injury, which was frequently associated with other challenging behaviours and was related to severity of autism symptoms, adaptive skills, intellectual functioning and language level ( P < 0.001). The main risk factor for SIB at adolescence was severity of autism symptoms ( P = 0.04). Cognitive development during childhood was found to be a protective factor ( P = 0.03) whereas at adolescence, the main protective factor was communicative abilities ( P = 0.04). Conclusions These data showed that SIB remained highly prevalent at adolescence and yielded risk and protective factors for developing SIB at this period of life. Limitations and perspectives for future research are discussed. [ABSTRACT FROM AUTHOR]