Autism spectrum disorders (ASD) are diagnosed worldwide, but the differences in environmental and cultural contexts between Eastern (Asian) and Western (European) countries can have a strong impact on recognition, interpretation, reporting and experience.
The study
China, with a population of nearly 1.4 billion and an increasing prevalence of ASD, represents a vastly growing population of individuals with ASD. Yet an autism diagnosis in Chinese children is less common than in Western children, at 0.7% in China versus an estimated 1-2% in the Netherlands. With this cross-cultural study between the Netherlands and China, we seek to explore the recognition, interpretation, reporting and experience of autism to inform the development of culture-specific supportive interventions and overcome stigma.
Participation
For this project, the first and second rounds of data collection have already been completed. Chinese and Dutch adults will be invited to participate in the third and fourth surveys. Adult participants of the NAR will automatically receive an invitation in the mail. Participation is of course voluntary and therefore not mandatory. If you decide to participate, you can participate in the study at home (online). You will need a computer or laptop for this.
The results
For this project, we focus on autism diagnostic research and interventions in China and the Netherlands. In the first study, we compared a parental questionnaire for autism (AQ-Short) between parents of autistic children in China and the Netherlands and found that parents in both countries reported their child's autistic features differently. This suggests that the interpretation and reporting of autism symptoms may be culture-dependent and that screening tools developed and standardised in the West should be adapted for non-Western cultures.
In the second study, we used the Parental Stress Index (PSI) to compare parenting stress levels between Chinese and Dutch parents of autistic children during the COVID-19 pandemic. We found that while Chinese parents were less concerned about COVID-19 than Dutch parents, Chinese parents experienced more parenting stress than Dutch parents. This result suggested that culture plays a role in the parenting stress of parents with an autistic child.
In the ongoing third and fourth studies, we are collecting data to compare public knowledge and stigma of autism in China and the Netherlands and to compare various data of Chinese and Dutch autistic adults, including age, gender, IQ, diagnosis, comorbidity, education, interventions, medication, living situation, social contacts, external support, needs and stigma. The aim of these two studies is to raise public awareness about autism, improve the participation of adults with autism in society and create a more inclusive environment for autistic people in China and the Netherlands.
PhD defence
On Nov. 4, 2024, researcher Fangyuan Liu defended her PhD on CHINA research. Her dissertation can be found below:
- Liu, F. (2024) Individuals with autism in China and the Netherlands: Cultural and contextual influences. [PhD-Thesis - Research and graduation internal, Vrije Universiteit Amsterdam]. https://doi. org/10.5463/thesis.863