The online version of this article (doi:10.1186/2040-2392-5-52) contains supplementary material, which is available to authorized users.
Wei-Zhen Zhou, Adam Yongxin Ye, Zhong-Kai Sun contributed equally to this work.
The authors declare that they have no competing interests.
LW conceived the idea and designed the study. WZZ assisted in the study design, conducted the survey, and pre-processed the data. DDW and SJL assisted in the survey. CHY assisted in the data pre-processing. WZZ and AYY analyzed the data. WZZ, ZKS, HHT, AYY, and LW interpreted the results. DDW and MZZ conducted the ADI-R interviews. YYW and TP performed clinical re-diagnoses. WZZ, AYY, and LW wrote the manuscript. All authors read and approved the final manuscript.
Autism spectrum disorder (ASD) is characterized by persistent deficits in social communication and interaction, and restrictive and repetitive patterns of behavior, interests or activities. This study aimed to analyze trends in ASD diagnosis and intervention in 20 years of data from the Beijing Stars and Rain Education Institute for Autism (SR), the first autism intervention center in mainland China, and from a recent survey of members of the Heart Alliance, an industry association of autism intervention centers in China.
We analyzed the registration data at the SR from 1993 to 2012 for a total of 2,222 children who had a parent-reported diagnosis of ASD and 612 of ‘autistic tendencies’. Most of the children who were the primary focus of our analyses were age six and under. We also analyzed results of a survey we conducted in 2013 of 100 member centers of the Heart Alliance. Generalized Estimating Equations, multiple linear regression and the Mann-Whitney test were used for data analysis. Statistically significant findings are reported here.
The number of hospitals where SR children received their diagnosis increased from several in the early 1990s to 276 at present. The proportion of ‘autistic tendencies’ diagnosis increased 2.04-fold from 1998 to 2012 and was higher for children diagnosed at a younger age. The mean age at first diagnosis of ASD or ‘autistic tendencies’ decreased by 0.27 years every decade. A higher level of parental education was statistically significantly associated with an earlier diagnosis of the child. The mean parental age at childbirth increased by about 1.48 years per decade, and the mean maternal age was 1.40 and 2.10 years higher than that in the national population censuses of 2000 and 2010, respectively. At the time of the survey 3,957 children with ASD were being trained at the 100 autism intervention centers. Ninety-seven of these centers opened after the year 2000. Economically underdeveloped regions are still underserved.
This study revealed encouraging trends and remaining challenges in ASD diagnosis and intervention among children at the SR over the past 20 years and the 100 autism intervention centers in China at present.
Additional file 1: Table S1-S4: The model formula, sample size and fitted coefficients for multiple regression models or GEE. The model formula was written in R-like style, which put the response variable left of ' ~ ' and the predictor variables right of ' ~ ', concatenated by ' + '. VIF, variance inflation factor. (XLS 44 KB)13229_2014_154_MOESM1_ESM.xls
Additional file 2: Figure S1: Residual plots for multiple linear regression models reported in Table S2-S4. (Left: residuals plotting against the fitted value; right: normal QQ plot of residuals). (PDF 2 MB)13229_2014_154_MOESM2_ESM.pdf
Additional file 3: Table S5-S8: The male and female count and ratio of children registered at the Beijing Stars and Rain Education Institute for Autism (SR). There were 5,143 children in total, among which 2,834 children had a parent-reported clinical diagnosis of autism spectrum disorder (ASD) or ‘autistic tendencies’. For analyses related to diagnosis, after applying the criteria on the age at registration, there remained 2,138 children. (XLS 37 KB)13229_2014_154_MOESM3_ESM.xls
Additional file 4: Table S9: The list of 100 autism intervention centers that participated in our survey. (XLS 61 KB)13229_2014_154_MOESM4_ESM.xls
Additional file 5: Table S10: The list of hospitals making diagnoses of autism spectrum disorder (ASD) obtained from the Beijing Stars and Rain Education Institute for Autism (SR) data. (XLS 56 KB)13229_2014_154_MOESM5_ESM.xls
Additional file 6: Figure S2: Trends of different groups of hospitals making diagnoses of autism spectrum disorder (ASD). (A) Line chart for the number of hospitals during 1990-2012 grouped by the level of cities in which they are located, and (B) the type of hospital. (C) The number of hospitals located in different regions during 1990-2012. (D) The number of diagnoses made in the top five hospitals during 1990-2012. Because the mean delay between the time of diagnosis and the time of application to the Beijing Stars and Rain Education Institute for Autism (SR) was approximately one year, most of the children who were diagnosed in 2012 have not yet applied; therefore, the number of hospitals declined in 2012. (PDF 1 MB)13229_2014_154_MOESM6_ESM.pdf
Additional file 7: Table S11: The numbers of diagnoses grouped by the level of cities in which the hospitals are located and diagnosis year. (XLS 39 KB)13229_2014_154_MOESM7_ESM.xls
Additional file 8: Table S12: The numbers of diagnoses grouped by the hospital type and diagnosis year. (XLS 39 KB)13229_2014_154_MOESM8_ESM.xls
Additional file 9: Table S13: The parent-reported diagnosis, Autism Diagnostic Interview, Revised (ADI-R) score and rediagnosis results given by child psychiatrists for 42 children that we reassessed. (XLS 25 KB)13229_2014_154_MOESM9_ESM.xls
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