Review articleA review of healthcare service and education provision of Autism Spectrum Condition in mainland China
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.
References (53)
- et al.
Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: The Special Needs and Autism Project (SNAP)
Lancet
(2006) - et al.
Practice parameters for the assessment and treatment of children, adolescents, and adults with autism and other pervasive developmental disorders. American Academy of Child and Adolescent Psychiatry Working Group on Quality Issues
Journal of the American Academy of Child Adolescent Psychiatry
(1999) - et al.
Investigation of raising burden of children with autism, physical disability and mental disability in China
Research of Developmental Disabilities
(2011) American Academy of Pediatrics: The pediatrician's role in the diagnosis and management of autistic spectrum disorder in children
Pediatrics
(2001)Diagnostic and statistical manual of mental disorders, DSM-IV-TR
(2000)- et al.
Prevalence of autism-spectrum conditions: UK school-based population study
The British Journal of Psychiatry
(2009) - et al.
A national sample of preschoolers with autism spectrum disorders: Special education services and parent satisfaction
Journal of Autism and Developmental Disorders
(2008) The hope and difficulties for parents with autistic children
Journal of educational research
(2011)- China Disabled Persons’ Federation. (2011). Report of the first summit conference of autism in China. Beijing, China...
- et al.
The development of special education in China: A sociocultural review
Remedial and Special Education
(2001)
Effectiveness of the Picture Exchange Communication System (PECS) on communication and speech for children with autism spectrum disorders: A meta-analysis
American Journal of Speech-Language Pathology
The investigation of current situation of autistic children in primary school
Journal of Education
Medical homes for children with autism: A physician survey
Pediatrics
Applied behavior analytic interventions for children with autism: A description and review of treatment research
Annals of Clinical Psychiatry
An investigation of social support system for autistic children in Jiangxi province
Journal of Yichun College
Evaluation of the relationship development intervention program
Autism
Health reform and De Facto Federalism in China
China—An International Journal
The paradoxical transition in China's health system
Harvard Health Policy Review
A survey of Autism knowledge and attitudes among the healthcare professionals in Lahore, Pakistan
BMC Pediatrics
Identification and evaluation of children with autism spectrum disorders
Pediatrics
Department for Education and Skills/Department of Health Good Practice Guidance on the education of children with autistic spectrum disorder
Child Care Health and Development
Prevalence of parent-reported diagnosis of autism spectrum disorder among children in the US, 2007
Pediatrics
National autism plan for children (NAPC): Plan for the identification, assessment, diagnosis and access to early interventions for pre-school and primary school aged children with autism spectrum disorders (ASD)
The National Autistic Society
The beginnings of inclusion in the People's Republic of China
Research and Practice for Persons with Severe Disabilities
Employment experiences, perspectives, and wishes of mothers of children with autism in the People's Republic of China
Journal of Applied Research in Intellectual Disabilities
Cited by (38)
How economic development affects healthcare access for people with disabilities: A multilevel study in China
2024, SSM - Population HealthBrief report: Parenting stress among Chinese and Dutch caregivers of children with autism
2023, Research in Autism Spectrum DisordersChallenges of case identification and diagnosis of Autism Spectrum Disorders in China: A critical review of procedures, assessment, and diagnostic criteria
2018, Research in Autism Spectrum DisordersCitation Excerpt :Clinicians must be aware of the possible shifts in constructs and interpret the results cautiously. Based on the current literature, there are few studies on the two gold standard diagnostic assessment tools, the ADOS-2 (Lord et al., 2000) and ADI-R (Rutter, Bailey, et al., 2003), in the Chinese population (review in Sun, Allison, Auyeung, Matthews, et al., 2013; Sun, Allison, Auyeung, Baron-Cohen, et al., 2013; Sun et al., 2013). Recent studies have begun to include both assessments for case confirmation (Sun, Allison, Auyeung, Matthews, Norton, et al., 2014; Sun, Allison, Auyeung, Matthews, Zhang, et al., 2014).
Influence of parental education on the intelligence quotient profiles and socially adaptive behavior of school-age children with autism spectrum disorder in eastern China
2024, Journal of Zhejiang University: Science BHearing Assistive Technology Facilitates Sentence-in-Noise Recognition in Chinese Children With Autism Spectrum Disorder
2023, Journal of Speech, Language, and Hearing Research