Perceptions of parents of the impact of autism spectrum disorder on their quality of life and correlates: comparison between mothers and fathers

International audiencePurpose: To compare mothers and fathers perceptions of the impact of autism spectrum disorder on their Quality of Life (QoL), we used the Parental-Developmental Disorders-Quality of Life scale (Par-DD-QoL).Method: The perception of QoL of mothers and fathers was compared for 130 pairs of parents of children with ASD and the associated variables were investigated.Results: Mothers perceived a significantly greater impact of ASD on their QoL than fathers. Parents perceived a higher impact of ASD on global QoL when their child's adaptive skills were low and when the level of aberrant behaviors was high. More precisely, the perception of QoL by the mothers was negatively associated with their child's internalized disorders, whereas the perception of QoL by the fathers was negatively associated with their child's externalized disorders. Neither the mothers' nor the fathers' perception of the impact on QoL was associated with their children's age or the severity of their autistic symptoms. Some parental factors, such as being members of a family association, having benefited from training in ASD and having experienced a disruption in professional activity were associated with a greater impact on their QoL.Conclusion: Our finding that the perceived impact of ASD on QoL differed between mothers and fathers argues for individualized psychosocial support. Moreover, the strong correlation between the child's clinical characteristics and the perception by parents of a higher impact of ASD on QoL should be seen as red flag concerning the needs of the parents in terms of social and educational support

Adaptive behaviors and related factors in children and adolescents with autism spectrum disorder: Report from ELENA cohort

International audienceThere are strong individual differences in adaptive behaviors (AB) in autism spectrum disorder (ASD) with conflicting results in literature about specific patterns and related factors. The present study aims to describe AB and identify related factors in terms of clinical and socio-familial characteristics in 875 children and adolescents with ASD in the multiregional ELENA cohort in France. Results showed that AB in children and adolescents with ASD were lower than in typically developing subjects, regardless of age group. AB were associated with clinical (gender, age at diagnosis, IQ, ASD severity, psychiatric comorbidities, motor and language skills, challenging behaviors), interventional (school attendance, special interventions) and familial characteristics (age, educational and socio-economic status of parents, household status, number of siblings). There is a need of interventions focusing on improvement of AB, tailored to children's characteristics