Cultural nuances: Creating an autism family experience questionnaire for China
It’s just a few days into the new year and already almost 2000 results can be found when typing “autism” into the Google Scholar search bar. Sifting through the pages of research on causes, therapies, and cures, I found a gem from China.
This study aimed to develop a new questionnaire to assess the positive contributions made to Chinese families by their autistic children. The researchers noted that most prior research examines the stresses and challenges families with autistic children face, whereas little work has explored positive impacts. Furthermore, there is a lack of culturally-validated tools to measure positive contributions in a Chinese context.
The research utilised a mixed-methods approach, beginning with semi-structured interviews with 10 parents of autistic children from two distinct regions of China. A qualitative analysis uncovered themes related to parents’ positive perceptions, such as personal growth and closer family relationships. These findings informed a 76-item questionnaire across 9 dimensions of positive contributions. After project analysis and an exploratory factor analysis, a final 30-item, 6-factor questionnaire was produced with overall good reliability and validity evidence.
The results indicated a medium, though variable level of positive contributions reported across families. Higher family income, “moderate severity,” and parental employment status were associated with heightened positive contribution scores. The researchers conclude this new questionnaire could effectively evaluate the positive impacts children with ASD have on Chinese families and potentially help clarify targets for improving family adaptation and quality of life.
Whilst tools assessing family experiences of autism do exist, such as the Autism Family Experience Questionnaire (AFEQ), the researchers deemed it inappropriate to directly apply such measures developed in other cultural contexts to China. Given potential differences in acceptance and awareness of autism, as well as supports available to Chinese families, a culturally-validated questionnaire was required.
Remember, China is a vast country with many different ethnic groups and customs across regions. Rather than just using an available Western questionnaire like the AFEQ, the researchers created a questionnaire for assessing autism’s effects on families that aligns with Chinese viewpoints. This is crucial as a one-size-fits-all approach does not capture all perspectives in such a large and diverse country. Whilst further efforts are warranted, developing a Chinese-specific tool represents good initial progress in understanding both the challenges and joys raising an autistic child can hold in modern China.
As I noted in my book, No Place for Autism?, China’s health system utilizes its own framework, the CCMD-3. This guides Chinese psychiatry in categorization and treatment guidance. More broadly, the CCMD-3 comes from a background valuing harmony and unity, reflected in conditions and disorders being viewed through their disruption to equilibrium within community, institutions, families and the self. Any treatments therefore concentrate on restoring balance to support societal cohesion. Thus, it makes sense that the new survey was created. Three cheers to the researchers.