Unravelling the Key Influencing Factors of Economic Burden by Caregivers for Children with Autism in Malaysia

The prevalence of Autism Spectrum Disorder (ASD) has increased significantly worldwide, placing a growing economic burden on caregivers. This study aimed to estimate the economic burden incurred by caregivers of children with ASD in Malaysia and identify the associated factors. A cross-sectional design was used, with data collected from 297 respondents between July and December 2023. A retrospective costing analysis was conducted using questionnaire data. Most of the children were male (80.1%), diagnosed with moderate Level 2 level of severity (62.6%) based on the Diagnostic and Statistical Manual of Mental Disorders (5th Edition) with a mean age of 7.23 (SD = 3.23). The estimated average annual total economic burden on the caregivers per child in 2022 was RM56,462.57, with developmental services cost being the greatest cost (RM13,800.00), followed by indirect cost (RM8400.00), direct non-healthcare cost (RM3600.00) and direct healthcare cost (RM2420.00). The regression results revealed that the children’s age, co-occurring conditions, the mother/female caregiver’s employment status, and the average annual household income were significant factors of the total economic burden. Identifying these factors highlighted the potential support needed by the caregivers. Development of social policies and interventions by the stakeholders based on the highlighted factors may encourage better caregivers’ and children’s well-being