From first concern to autism diagnosis: Parental experiences and satisfaction in autism identification in China

Aims: The study aimed to analyze the autism diagnosis process in China. We investigated parents’ experiences and healthcare satisfaction in obtaining an autism diagnosis for their children, examined predictors associated with the age of diagnosis, and identified child, family, and service-level factors that contributed to delays in autism diagnosis. Methods: A cross-sectional survey was distributed via a Qualtrics link. Participants included 239 parents whose children underwent an autism diagnosis within past three years. Participants were from 25 out of 34 province-level divisions in mainland China. Results: On average, children were diagnosed at the age of 2.79 years, with a mean of 13-month delay between parents’ initial concerns and the formal diagnosis. Parents’ healthcare satisfaction was strongly correlated with providers’ proactive responses, such as recommending developmental testing and suggesting services. The regression analysis revealed that initial concerns in sensory domain(b = −0.197, p < 0.01), older age that parents first sought help(b = 0.293, p < 0.01), and visited a hospital(b = 0.501, p < 0.001), and a greater number of hospitals visited (b = 0.169, p < 0.001) predicted an older age at diagnosis. Higher maternal education level (b = 1.685, p < 0.05), was associated with a longer parental delay between initial concerns and the first hospital visit. Single-parent families (b = 13.084, p < 0.001) experienced significantly longer diagnostic delays between the first hospital visit and age of diagnosis. Parents’ initial concerns in motor domain were linked to longer parental delay (b = 7.95, p < 0.000) and total delay (b = 9.959, p < 0.000), while initial concerns in language were associated with shorter parental delay (b = −5.19, p < 0.000) and total delay (b = −3.72, p < 0.01). Conclusion: These findings emphasize the importance of parental involvement in the autism diagnosis and highlight the need for professional education to reduce diagnostic delays. Public health services should provide parents with additional support and education so that they can effectively navigate the system and take prompt actions to accelerate the diagnostic process.