Parental Quality of Life in ASD Families: Influence of Autism Severity, Adaptive Functions, Availability of Public Health Services and Prospective Assessment of the IMPACT of Case Management Intervention on Parental Stress.

Background: Parents of autistic individuals are under great emotional pressure for multiple reasons. Autism spectrum disorder (ASD) in a child has a major negative impact on the quality of life (QoL) of his/her parents. “Case management” intervention should indirectly improve parental QoL by coordinating the diagnostic assessments, therapeutic interventions, school- or work-related programs, and daily life assistance provided by “care managers” to autistic individuals and their families.

Objectives: (1) To assess the QoL in parents of autistic individuals and to characterize its relationship with the severity of their child’s autism and the availability of public services; (2) To measure the impact of one year of case management intervention (T1) on the QoL recorded prior to treatment (T0). The present communication is focused on objective n.1.

Methods: Parents of 39 autistic individuals consecutively recruited for the Case Management Program supported by Regione Lombardia were assessed at T0 for quality of life (QoL) using both the WHOQOL and the recently developed QOLA (subscale A=general QoL, subscale B=Autism-related QoL). Their autistic offspring was assessed using WISC-III, Leiter-R or Raven’s matrices for IQ, ADOS, VABS, SRS, TRF and CBCL. Data were analysed by c² test and ANOVA, correlations by Pearsons’s R statistics.

Results: Data are available on 29 patients (M:F=25:4) and their parents at T0. WHOQOL and QOLA-A provide superimposable measures of maternal and paternal QoL (mean scores are 84.58 and 82.05 for WHOQOL, 84.15 and 89.29 for the QOLA-A, respectively). Parental QoL is worsened by the child’s ASD (maternal and paternal QoL scores are 66.70 and 68.85 for the QOLA-B, respectively). QoL is lower for both fathers and mothers if their autistic offspring is non-verbal, has co-morbid intellectual disability and intense mannerisms. Paternal QoL appears more sensitive to low imagination and creativity, and to intense stereotypic behaviors in the affected child, as recorded by the ADOS. VABS scores in the affected offspring and parental QoL are significantly correlated. Mothers appear especially sensitive to lack of verbal communication and fathers to lack of socialization. Strikingly, total WHOQOL scores display a significant positive correlation with QOLA-A scores for “availability of health services for ASD” in fathers (R=0.529, P<0.05), while mothers display the opposite trend (R=-0.326, P=0.104).

Conclusions: Overall, parents of individuals with ASD display sizable levels of autism-related stress. Parental QoL is especially hampered by the child’s low functioning, comorbid intellectual disability and expressive language deficits, as compared to lack of social non-verbal communication. Motor stereotypies and mannerisms also have a major negative impact on QoL both for fathers and mothers. Fathers are strongly more reliant on social support and efficient health services as compared to mothers, who may actually feel worse if their autistic child is “taken over” by efficient health services without maternal involvement in the process. We are currently verifying the latter hypothesis in the entire data set of 39 families analyzed at T0, while the efficacy of case management intervention on improving parental QoL is also being prospectively assessed at T1 (i.e., after 12 months of intervention).