Autism Awareness in China: Preliminary Data on the Autism Stigma and Knowledge Questionnaire (ASK-Q)

Background: The estimated global prevalence of autism spectrum disorder (ASD) is 1 in 160 children (WHO, 2017). In the United States, it is 1 in 59 children (CDC, 2018). However, the number in China has been consistently lower, ranging from 1 in 255 (Wang et al., 2018) to 1 in 1205 (Jin et al., 2018). Given research suggesting that prevalence should not differ dramatically across geographical regions (Elsabbagh et al., 2012), this may suggest significant under-diagnosis in a country hosting nearly 20% of world population. It has been shown that low knowledge and stigma perception contribute to low diagnosis rate and increased diagnosis age in under-represented population (Magaña et al. 2013; Mandell et al. 2009). To date there has been no study examining ASD knowledge among the general public in China. One suitable instrument for addressing this issue is the Autism Stigma and Knowledge Questionnaire (ASK-Q; Harrison et al., 2017), which was developed to systematically evaluate ASD knowledge in cross-cultural contexts.

Objectives: This study aimed to 1) translate and adapt ASK-Q into Chinese and evaluate the psychometric properties; 2) gather information about public knowledge of ASD in China using the ASK-Q Chinese.

Methods: ASK-Q translation followed a rigorous translation-back-translation procedure (Guillemin et al., 1993). To examine the cross-cultural validity of the ASK-Q in China, a group of Chinese-English bilinguals with ASD expertise reviewed the questionnaire and made an adaptation to only one item to better describe Chinese stigma perception of disease. Responses were collected using an online survey tool, Wenjuanxing and distributed via social media platforms (i.e., Wechat and Weibo). ASK-Q evaluates three ASD knowledge categories: Diagnosis/symptoms, etiology, and treatment, as well as stigma endorsement. The responses were scored as correct or incorrect. Item discrimination of high vs. low knowledge was obtained by comparing the number of correct responses in the high group (highest 25% on total score) and that in the low group (lowest 25%).

Results: 1,244 valid responses were collected from mainland, Hong Kong, and Macau. In the sample, 76% were females and 89% were urban residents. Based on the cutoffs provided in Harrison et al. (2017), 92.7% participants demonstrated adequate knowledge for diagnosis, 78.7% for etiology, 85.2% for treatment, and 98.6% for not endorsing ASD stigma. Chi-squared analysis indicated significantly higher scores in the high knowledge group than the low knowledge group on all four categories. The five items that best discriminated high vs. low knowledge were: 11. Autism is preventable (Etiology, Stigma). 41. Traumatic experiences very early in life can cause autism (Etiology). 40. There is currently no cure for autism (Treatment). 5. We now have treatments that can cure autism (Treatment). 28. Many children with autism repeatedly spin objects or flap their arms (Diagnosis/Symptoms).

Conclusions: Etiology appeared to be the knowledge gap of the surveyed participants. The results have important implications for improving public awareness of ASD in China. Training can be implemented directly addressing the identified misconceptions. Further study should be pursued to include under-represented groups such as males and rural citizens.