Individuals with autism in China and the Netherlands: Cultural and contextual influences

This dissertation addresses the cross-cultural understanding of autism, focusing on the experiences of parents of autistic children and autistic adults in China and the Netherlands. While autism spectrum disorders (ASD) are globally prevalent, cultural and contextual factors may influence the recognition, interpretation, and reporting of autism. Such factors also shape the well-being and community integration of individuals with autism. However, most autism research has focused on Western high-income countries, leaving a gap in non-WEIRD contexts, such as China. This work seeks to fill this gap by comparing cultural and contextual influences in China and the Netherlands. In Chapter2, we explored early detection and developmental monitoring systems, particularly the cultural and contextual relevance of screening tools. In China, autism diagnoses are often initiated by parents, making it critical to ensure screening tools are culturally appropriate. The Autism Spectrum Quotient-Short (AQ-Short) as a parent-report screening tool was examined for its reliability and validity in China and the Netherlands. We included 327 Chinese and 694 Dutch parents of autistic children between 2 and 17 years old from China and the Netherlands. The exploratory factor analysis of the AQ-Short revealed culturally variant factor structures between China and the Netherlands. We noted that ‘Numbers and Patterns’ were negatively correlated with ‘Social Skills’ in the Chinese sample only, indicating that a strong interest in numbers or patterns might not be seen as indicative of autistic traits in China. The behaviours and needs of autistic children can place considerable demands on their primary caregivers, leading to increased parenting stress and negatively affecting their well-being. These challenges can leave caregivers of autistic children distressed and isolated, impacting their marital satisfaction and parenting quality, which in turn affects the child's behaviour and development. In Chapter 3, we examined the varying levels of parenting stress experienced by caregivers of children with autism in China and the Netherlands. The study included 95 Chinese caregivers and 118 Dutch caregivers of autistic children aged 2 to 16 years. Chinese caregivers reported higher parenting stress levels than Dutch caregivers. Compared to older caregivers. younger caregivers in both countries reported more parenting stress. The increased stress among Chinese caregivers may be attributed to societal expectations of parental responsibility, limited access to professional support, and heightened social stigma. In the last two chapters, our focus shifts to the degree of community integration and life satisfaction of autistic adults and we compare their objective and subjective outcomes between China and the Netherlands. In Chapter 4, data from caregivers of 99 Chinese and 109 Dutch young autistic adults revealed limited community integration in both countries, low rates of employment, limited independent living, and few close friendships. Proxy-reported life satisfaction was relatively low in both countries, but even lower among Chinese adults. Lower proxy-reported life satisfaction of Chinese autistic adults is possibly due to limited awareness and acceptance of autism in China, inadequate or inaccessible support services, higher parenting stress, or general cross-country differences in well-being. Chapter 5, provides insights into the self-reported outcomes of autistic adults. The study included 36 Chinese and 29 Dutch autistic adults. Chinese and Dutch participants exhibited similar levels of employment, frequency or quality of friendships, and life satisfaction. However, Chinese autistic adults were more likely to live with their parents and reported higher levels of autism-related self-stigma compared to Dutch adults. Higher self-stigma was negatively correlated with friendships and life satisfaction across both samples. In sum, this dissertation provides basic insights into how cultural and contextual factors may influence the experiences of autistic individuals and their families, emphasizing the need for tailored approaches to autism care and support in different cultural settings.