Dataset Information

Service provision for autism in mainland China: preliminary mapping of service pathways.

ABSTRACT: Few data on healthcare services for individuals with Autism Spectrum Conditions (ASC) are available from mainland China. This article is based on findings from 69 semi-structured interviews with parents of children with ASC in three intervention centres. The respondents are from 19 regions in mainland China. A service-mapping questionnaire containing 50 questions is developed and used as an interview schedule for service mapping. The pathway to diagnosis and intervention for children with ASC is presented according to parents' experience. The findings report considerable delay along the pathway which may be partly due to the under-developed service system. Several cultural issues are identified which may also contribute to the delay, such as the perception of mental illness, folk beliefs equating delayed development of language skills in early childhood with future high intelligence, and the state-imposed one-child policy. Delays in recognising ASC and a lack of support are also considered to be associated with the considerable financial burden placed on parents of children with ASC in mainland China.

SUBMITTER: Sun X

PROVIDER: S-EPMC6345370 | biostudies-literature | 2013 Dec

REPOSITORIES: biostudies-literature

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Service provision for autism in mainland China: preliminary mapping of service pathways.

Sun Xiang X Allison Carrie C Auyeung Bonnie B Matthews Fiona E FE Baron-Cohen Simon S Brayne Carol C

Social science & medicine (1982) 20130827

Few data on healthcare services for individuals with Autism Spectrum Conditions (ASC) are available from mainland China. This article is based on findings from 69 semi-structured interviews with parents of children with ASC in three intervention centres. The respondents are from 19 regions in mainland China. A service-mapping questionnaire containing 50 questions is developed and used as an interview schedule for service mapping. The pathway to diagnosis and intervention for children with ASC is ...[more]

PMID: 24331886

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Project description:The prevalence of autism spectrum conditions (ASC) is 1% in developed countries, but little data are available from mainland China, Hong Kong and Taiwan. This study synthesizes evidence relating to the prevalence of ASC in these areas and assesses the effects of research methodology on prevalence estimates.Systematic literature searches were conducted in PubMed, Web of Knowledge, China Web of Knowledge and Weipu databases, as well as relevant papers published from 1987 to 2011, reporting prevalence estimates of ASC or childhood autism in mainland China, Hong Kong and Taiwan. Summary estimates of prevalence were calculated with a random effects model. The effects of research methodology on the prevalence estimates were assessed using a meta-regression model.There were 25 studies eligible for review, 18 of which were suitable for inclusion in a meta-analysis. Pooled prevalence of childhood autism was 11.8 per 10,000 individuals (95% confidence interval (CI): 8.2, 15.3) in mainland China. Pooled prevalence of ASC was 26.6 per 10,000 (95% CI: 18.5, 34.6) in three areas. Substantial heterogeneity was identified between studies (I2>75%). The prevalence estimate of childhood autism was most strongly associated with the choice of screening instrument. After adjustment for age group, the odds ratio for prevalence estimates when using the Autism Behavior Checklist (ABC) as the screening instrument compared with those using the Clancy Autism Behavior Scale (CABS) was 0.29 (95% CI: 0.12, 0.69), and 1.79 (95% CI: 0.70, 4.55; P= 0.20) when using the Checklist for Autism in Toddlers (CHAT) compared to the CABS.The available studies investigating the prevalence of ASC in China, Hong Kong and Taiwan have focused mainly on childhood autism rather than the whole spectrum. The prevalence estimates are lower than estimates from developed countries. Studies using more recently developed screening instruments reported higher prevalence than older ones. However, available studies have methodological weaknesses and therefore these results lack comparability with those from developed countries. Our findings indicate a potential under-diagnosis and under-detection of ASC in mainland China, Hong Kong and Taiwan, and a need to adopt more advanced methods for research of ASC in these areas.

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Dataset Information

Service provision for autism in mainland China: preliminary mapping of service pathways.

Publications

Service provision for autism in mainland China: preliminary mapping of service pathways.

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