Abstract
BACKGROUND: Autism spectrum disorder (ASD) is a complex neurodevelopmental disability that typically appears early in life. ASD is frequently associated with challenging behaviors (CBs), which can be categorized into aggressive or disruptive, stereotypic and self-harming behaviors. The prevalence and patterns of challenging behaviors in ASD children have not been reported in the Malaysian population. Challenging behaviors may influence caregiver demands and parental quality of life. Understanding how prevalent challenging behaviors are, the types of behaviors exhibited, what factors contribute to them, and how they affect the quality of life of parents with ASD children are important aspects of ASD management. OBJECTIVES: This study was conducted to determine the prevalence and types of challenging behaviors in children with ASD, and factors that predict them. The quality of life in parents of children with ASD, and predictors for these, were also assessed. Finally, the association between challenging behaviors and quality of life in parents was determined. METHODS: In this purposive consecutive study, a total of 166 parents of children with ASD aged between 2 to 18 years old were recruited from the Child Development Centre (CDC) in Universiti Kebangsaan Malaysia over a period of 11 months between 1st June 2021 and 31st May 2022. The Autism Spectrum Disorders - Behavior Problem for Children (ASD-BPC) questionnaire was translated to the Malay language and used to assess prevalence and subtypes of challenging behaviors in ASD children. The quality of life of parents was ascertained using the Quality of Life in Autism (QoLA) questionnaire and described in median and IQR. Univariate and multivariate regression was performed to assess predictors for challenging behaviors and parental quality of life. Mann-Whitney test was utilized to determine the association between challenging behaviors and parental quality of life. RESULTS: The overall prevalence of challenging behaviors in ASD children was 89.8%, with the highest prevalence seen for stereotypic behaviors (75.9%). The predictors for challenging behaviors were child age and family income. The median quality of life score in parents of ASD children in this study was 103.0 (IQR:25). Challenging behaviors in ASD children were found to be associated with parental quality of life, with lower quality of life scores observed in ASD children who have "aggressive/disruptive" behaviors (p = 0.041) and "self-injurious" behaviors (p = 0.042). CONCLUSIONS: The prevalence of challenging behaviors amongst ASD children was high (89.8%), of which the most prevalent type was stereotypic behavior. Presence of aggressive or disruptive and self-injurious behaviors were linked to lower quality of life in parents, highlighting the need for tailored support and interventions to improve family wellbeing.