Review article
A review of healthcare service and education provision of Autism Spectrum Condition in mainland China

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Abstract

Little is known about the current situation regarding Autism Spectrum Conditions in mainland China. Electronic databases and bibliographies were searched to identify literature on service provision for ASC in both English and Chinese databases. 14 studies and 6 reports were reviewed. The findings of identified papers on service provision were summarized according to four settings for ASC including healthcare, mainstream education, private special education, and state-run special education. The literature on the situation of the healthcare system and educational services for children with ASC in China was profoundly limited. There were great financial problems faced by the parents of autistic children which were partly due to the under-developed healthcare and educational system for ASC.

Highlights

► Main service settings for ASC: healthcare settings, mainstream schools, private rehabilitation centres, state-run rehabilitation centres. ► Shortage of resources in service provision leads the delay in diagnosis of ASC and subsequently the implementation of interventions. ► A lack of awareness and knowledge about ASC in the society. ► Underdeveloped system of service provision for ASC.

Introduction

Autism Spectrum Conditions (ASC) are neurodevelopmental conditions leading to impairments in social interaction, communication alongside repetitive and stereotyped behaviours and narrow interests (WHO, 1993). ASC includes autistic disorder, Asperger's Disorder and Pervasive Developmental Disorder-not otherwise specified (PDD-NOS) (American Psychiatric Association, 2000)). Recent epidemiological studies from the UK and US suggest the prevalence of ASC is around 1% (Baron-Cohen et al., 2009, Kogan et al., 2009). Research on the epidemiology and prevalence of ASC in mainland China is still lacking. A review (Sun & Allison, 2009) reported that prevalence estimates for Childhood Autism in mainland China were much lower than recent studies in the West (Baird et al., 2006, Baron-Cohen et al., 2009, Rice, 2011). The population of China exceeds 1.37 billion. Therefore, there are likely to be 13.7 million individuals who have ASC (diagnosed or undiagnosed) and who may require support and services.

Children with ASC and their families require a range of assessments and support services (McLennan, Huculak, & Sheehan, 2008). In the UK, although there is no national screening or surveillance programme for ASC, various bodies developed a strategy of good practice, including the Autism Spectrum Disorders Good Practice Guidance (GPG) (McConachie & Robinson, 2006). The National Autism Plan for Children (NAP-C) and the more recent NICE guidelines provided recommendations for service structure on the identification, diagnosis and early intervention for ASC (Le Couteur, 2003, National Institute of Health and Clinical Excellence, 2011). In the US, practice guidelines for service provision of ASC have been published regularly since 1999 by the American Academy of Child and Adolescent Psychiatry (Volkmar, Cook, Pomeroy, Realmuto, & Tanguay, 1999). The American Academy of Paediatrics (AAP) proposed a developmental surveillance and screening algorithm for paediatric preventive care visits for ASC in 2006 (Johnson & Myers, 2007).

After diagnosis, intervention programmes are recommended in both UK and US. The NAP-C (NAS 2003) recommended that intervention for autism should commence no later than 6 weeks following the diagnosis (Jones, 2006). In the US, several types of intervention programmes have been provided for children with ASC, such as speech therapy, social skills teaching, behaviour management programmes, and service coordination/case management (Bitterman et al., 2008, White et al., 2007). The evaluation of service provision and delivery for individuals with ASC has been investigated in both the West and East (Golnik et al., 2009, Imran et al., 2011, Rahbar et al., 2011, Ruble et al., 2005).

Mental healthcare in mainland China has been recognised as a significant problem (Park, Xiao, Worth, & Park, 2005). The development of service system for mental health has undergone many changes. Regarding the healthcare system, the communist government built strong collective healthcare and public health systems after 1949 (Park et al., 2005), aiming to provide universal healthcare access with relatively low costs. However, during the Cultural Revolution (1966–1976), the development of all critical domains such as the economy, health, education in mainland China was halted (McCabe, 2003). Following the introduction of ‘Reform and Opening’, the reform in the health system started in the 1980s. The reform reduced the central governmental support while expanding the functions of the market which privatized the health system (Huang, 2002, Park et al., 2005). However, a consequence of this reform was the exacerbation of inequality of healthcare access especially between urban and rural areas (Ho, 2010, Huang, 2002). Children with autism were first diagnosed in mainland China in 1982, when it was reported by Dr Tao in Nanjing (McCabe, 2008b, McCabe, 2008a, Tao, 1982, Tao, 1987). Nowadays, in mainland China, ASC is categorised as a mental disability which comes under the monitoring and administration of a government body called the China Disabled Persons’ Federation (CDPF). The CDPF is responsible for people with disabilities and also for issuing a disability certificate, which is a prerequisite for receiving a government allowance.

Similarly, the reform in the education began soon after the commencement of the Reform and Opening. The promotion of integration education for children with disability was launched in the mid 1990s (National People's Congress, 1986) through the introduction of a Law of the People's Republic of China to protect individuals with disabilities (National People's Congress, 1990) and Regulations on education for individuals with disabilities (State Council, 1994). Those laws achieved the implementation of a compulsory nine-year education for all children (McCabe, 2008b). In 1988, The ‘Suiban Jiudu’ (attending schools in regular classroom) policy was issued to encourage children with disabilities to attend mainstream school classrooms (Huang, 2002).

However, children with autism were reported to have been turned away from both mainstream and special education for a long time (McCabe, 2003) due to a lack of resources and knowledge about autism. Different types of educational programmes were established to serve children with disabilities, which included special schools, special classes, and state-run special education of children with mild cognitive disabilities and sensory impairments who can function relatively well in the classroom. Since the early 1990s, several private and state-owned intervention programmes for children with autism were gradually developed (McCabe, 2003).

However, to date, little is known about how current service provision works for individuals with ASC in mainland China. This study reviews the available literature on service provision for people with ASC in mainland China, and to learn about the current situation regarding ASC and identify possible directions for improvements in future research and service planning.

Section snippets

Literature search

Literature searches were conducted in January 2012 in four databases (English databases: Pubmed and Web of Knowledge; Chinese databases: Weipu and China Web of Knowledge) for publications focusing on healthcare and education provision for individuals with ASC in mainland China. Literature searches were conducted with broad search terms in order to identify all available studies. The search strategy is shown in Box 1.

Data abstraction and inclusion criteria

After abstract searches, all possible relevant papers were read. The data in

Study identification

Six papers were identified from two English databases and eight papers from two Chinese databases, as well as six reports from the CDPF regarding the situation in six provinces. The results are provided in Table 1. Seven papers focused on the healthcare system, of which five were original studies, one was a summary report and one paper only had an English abstract. Seven studies were identified for education provision, of which six were original studies and one was a review. Six reports

Summary of findings

This is the first review of service provision of ASC in mainland China. It has identified literature from both the West and China as well as directly from the government. The reviewed studies mainly based on interviews with service providers and parents of children with autism. It provides a summary of crucial evidence on both healthcare and education service for children with ASC in mainland China. Governmental reports were also reviewed. Findings suggest that there are achievements as well as

Acknowledgments

This work forms a PhD thesis entitled “Epidemiology of Autism Spectrum Conditions in China” (University of Cambridge, 2012). Xiang Sun was partly founded by Cambridge Commonwealth Trust and Clare Hall during PhD study.

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