Abstract
Background:The effects of having a child with Autism Spectrum Disorder (ASD) on parents are multifaceted and pervasive. While ample evidence has been provided that these families are under severe stress, there are still several knowledge gaps and unresolved questions.Objective:This study aimed at quantifying the subjective and objective burden of ASD in mothers and fathers, and at improving the understanding of the interplay between parental burden, child’s characteristics, and parents’ coping resources and strategies.Methods:The parents of 359 children/adolescents with ASD were compared to parents of age-matched patients with Down syndrome (N=145) and Type 1 diabetes mellitus (N=155). Child’s clinical characteristics and parents’ caregiving burden, psychological distress, coping resources and strategies were assessed.Results:The parents of children with ASD reported higher objective and subjective burden, more frequent psychological distress, lower social support. Mothers reported greater subjective burden than fathers. Structural equation modeling showed that the most consistent positive and negative predictors of objective and subjective burden were ASD symptom severity and social support, respectively. Other positive predictors were engagement, distraction and disengagement coping, intellectual disability, and adaptive functioning. Other negative predictors were spiritual wellbeing and hardiness. Some effects were indirect through social support and coping strategies.Conclusion:This study confirmed that parents of children with ASD carry a huge caregiving burden, and added to our understanding of the factors associated with burden. The findings may help inform the design of effective interventions aimed at reducing burden among the parents of children with ASD.
Highlights
Autism Spectrum Disorders (ASD) include a variety of childhood-onset and lifelong neurodevelopmental disorders with an enduring impact on multiple domains of functioning, characterized by persistent deficits in social communication and social interaction and restricted and repetitive behaviour, interest and activities [1]
We found a significant direct and positive path linking engagement coping to objective burden, and a negative direct path linking perceived social support to objective burden
Engagement coping was predicted by hardiness, disengagement coping by global functioning, cognitive reframing coping by hardiness, and perceived social support by spiritual wellbeing
Summary
Autism Spectrum Disorders (ASD) include a variety of childhood-onset and lifelong neurodevelopmental disorders with an enduring impact on multiple domains of functioning, characterized by persistent deficits in social communication and social interaction and restricted and repetitive behaviour, interest and activities [1]. A recent review of epidemiological surveys of autistic disorder and pervasive developmental disorders estimated a global median prevalence rate of ASD of 62/10,000 in the general population worldwide [2]. The effects of having a child with ASD on parents and families are, like the disorder itself, multifaceted and pervasive. Caring for children with ASD is challenging due to the severity and chronicity of ASD, their extensive developmental and physical comorbidities, and the difficulties of health services in making widely available the integrated and intensive interventions needed by persons with ASD [4]. The huge impact of having a child with ASD is apparent in both the severity and breadth of parent domains that seem to be influenced [5]. The effects of having a child with Autism Spectrum Disorder (ASD) on parents are multifaceted and pervasive. While ample evidence has been provided that these families are under severe stress, there are still several knowledge gaps and unresolved questions
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