Abstract

BackgroundAutism 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.MethodsWe 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.ResultsThe 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.ConclusionsThis 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.Electronic supplementary materialThe online version of this article (doi:10.1186/2040-2392-5-52) contains supplementary material, which is available to authorized users.

Highlights

  • Autism spectrum disorder (ASD) is a neurodevelopmental disorder characterized by persistent deficits in social communication and social interaction, and restrictive and repetitive patterns of behavior, interests or activities [1]

  • Clinical diagnoses are made according to the Chinese Classification and Diagnosis Criteria of Mental Disorders, 3rd edition (CCMD-3) [14], which is based on the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV) [15] and the International Statistical Classification of Diseases and Related Health Problems, 10th Revision (ICD-10) [16]

  • This ratio was higher than the estimates in many countries but consistent with recent estimates in European and Chinese populations [45,46]. This ratio was higher in Southern China (8.82:1), but it was not statistically significant after false discovery rate (FDR) adjustment (Fisher’s exact test, Benjamini and Hochberg FDR adjusted P value =1.00, [see Additional file 3: Table S5])

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Summary

Introduction

Autism spectrum disorder (ASD) is characterized by persistent deficits in social communication and interaction, and restrictive and repetitive patterns of behavior, interests or activities. Autism spectrum disorder (ASD) is a neurodevelopmental disorder characterized by persistent deficits in social communication and social interaction, and restrictive and repetitive patterns of behavior, interests or activities [1]. This disorder was not recognized in China until 1982 when the first cases were reported by Kuotai Tao [2]. Doctors in China sometimes give out the diagnosis of ‘autistic tendencies’ or give no diagnosis, but encourage the parents to seek intervention for the children as soon as possible without waiting for a definitive clinical diagnosis to be made [9]

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