ASSIGNMENT 4

O R I G I N A L P A P E R

Children with Autism in the People’s Republic of China: Diagnosis, Legal Issues, and Educational Services

Ann X. Huang • Meixiang Jia • John J. Wheeler

Published online: 20 November 2012

� Springer Science+Business Media New York 2012

Abstract Since the late 1970s, special education in the

People’s Republic of China has experienced significant

reform and fast development. However, education for

children with severe developmental disabilities, especially

autism spectrum disorders (ASDs), is still the greatest

challenge in the field. This paper aims to give readers an

overview of what is happening to children with ASDs in

China. We first address the issue of prevalence of ASDs,

and then offer an introduction to the diagnostic process.

After that, a review of disability-related legislation is

provided, followed by a description of current treatment

options and available educational services. Finally we

introduce all extent service providers and their roles.

Keywords Autism spectrum disorders � Diagnosis � Special educational services � Legal issues � Behavioral intervention/management � Chinese autism

Introduction

For centuries, educational services for children with dis-

abilities, especially those with severe developmental dis-

abilities, such as autism spectrum disorders (ASDs), have

been absent in the People’s Republic of China (‘‘China’’

from now on in this paper refers to ‘‘the People’s Republic

of China’’). Although the beginning of special education

can be traced back to the late nineteenth century, when

Western missionaries first established special schools in

eastern coastal regions, the real development of special

education on a nationwide scale didn’t begin until in the

late 1970s, when the late President Xiaoping Deng began to

carry out the Reform and Open Door policy. Since then,

special education in China has experienced significant

reform and fast development, together with profound

political, economic and social changes. The passage of the

1986 Compulsory Education Law and its succeeding leg-

islation in the early 1990s reinforced further development

of the field. However, most children with severe, multiple

disabilities, such as profound cognitive impairments and

classic autism (i.e., early infantile autism), are still kept

away from both schools and community life.

Although autism has been identified for more than

60 years by Western countries, the first case of official

diagnosis of autism was reported by Tao from Nanjing

Brain Hospital in a Chinese journal in the early 1980s,

almost four decades after Kanner (1943) first published his

groundbreaking paper on early infantile autism. In the late

1980s, Tao (1987) introduced his first four cases of Chinese

early infantile autism to the world in English. Since then, a

growing number of children with such a disorder have been

identified. Especially in recent years, the number of chil-

dren diagnosed with ASDs has been reported on dramatic

rise. However, he noted then that the prevalence of autism

A. X. Huang (&) Department of Counseling, Psychology, and Special Education,

School of Education, Duquesne University, 600 Forbes Ave,

Pittsburgh, PA 15282, USA

e-mail: [email protected]; [email protected]

M. Jia

Institute of Mental Health, School of Medicine,

Beijing University, Beijing, People’s Republic of China

J. J. Wheeler

Center of Excellence in Early Childhood Learning and

Development, Claudius G. Clemmer College of Education,

East Tennessee State University, PO Box 70434,

Johnson City, TN 37614, USA

123

J Autism Dev Disord (2013) 43:1991–2001

DOI 10.1007/s10803-012-1722-6

in China seemed to be less than that in other Western

countries.

Prevalence

For generations, ‘‘out of sight, out of mind’’ had been the

attitude toward individuals with disabilities in China. Due

to the fact that many (between 40 and 55 %) individuals

with autism also have cognitive impairments at various

levels (Chakrabarti and Fombonne 2001), usually these

people are hidden at home and deprived of both education

and community life in China. As a result, autism has been

misinterpreted in China as a rare disease affecting only an

extremely small number of people. Even today, most

people in this country have never heard of the term ‘‘aut-

ism’’, not to mention have any knowledge about this dis-

order. In addition, no official statistics have ever been

released by the Chinese Central Government regarding the

number of people who were diagnosed with ASDs since no

nation-wide systematic epidemiological studies have ever

been reported to exam the prevalence of this disorder in

China.

However, according to a sample survey by Zhang and Ji

(2005) conducted in Tianjing, the prevalence of autism

turned out to be as high as 1.1 per 1,000 in young children

aged 2–6. Similarly, Wong and Hui (2008) reported that

the prevalence of autism was about 16 per 10,000 for

children under 15 years old in Hong Kong. Although these

numbers revealed the number of children affected by ASDs

in some regions in China, they are not recommended to be

used as the official prevalence of autism in China due to the

limitation in sampling and research methodology. We can

be sure, though, the number of children (aged under 18 in

China) who are affected by autism is actually higher than 1

per 1,000 births. However, even if we use the figure of

1/1,000 to calculate (considering the population in China is

1.3 billion), we still come up with a surprisingly large

number: China has at least 1.3 million individuals affected

by ASDs nationwide!

Diagnosis

From the statistics, it seems it is reasonable to assume that

the Chinese are less likely to be affected by this mysterious

neurological disorder than Westerners. Tao (1987) also

addressed the same issue more than two decades ago.

However, the occurrence of autism is not subject to such

factors as race, nationality, and social background (CDC

2007). Thus a better way to explain such a discrepancy is to

look at the differences in diagnostic criteria and practices

between China and Western countries, including whether

or not the professionals are competent in making such a

diagnosis in China (more discussion regarding these topics

will be presented in the later sections of this paper).

Geographically, approximately 80 % of the Chinese

population resides in poor, remote, and rural areas. Given

other factors such as financial constraints and technical

limitations (e.g., lack of experts in autism and unavail-

ability of a systematic framework for identification and

diagnosis of autism), it is extremely difficult to identify and

diagnose individuals with autism properly in this country.

It was estimated that less than 20 % of the whole popula-

tion affected by autism has been identified and diagnosed

(Huang and Wheeler 2007). Sadly, many individuals with

both autism and cognitive impairments have been simply

diagnosed as having only cognitive impairments (e.g.,

mental retardation) due to poor awareness of ASDs in

professionals, particularly psychiatrists in China (Huang

and Wheeler 2007; Tao 1987).

It is noted that usually only children with classic autism

(i.e., early infantile autism) are likely to be identified and

receive an official diagnosis of autism in China. Compar-

atively, few professionals (i.e., mostly psychiatrists) know

about high functioning autism and/or Asperger syndrome

due to their distinct differences from classic autism.

Overall they are reluctant to label a child as having autism

if he/she is high-functioning and has less severe autism

symptoms. It is a common practice for Chinese psychia-

trists to diagnose the child as ‘‘having the tendency of

autism’’ or ‘‘autism-like case’’, rather than giving him/her

the label of ‘‘autism’’ directly, unless the child has obvious

classic autistic disorder. In the United States, children with

a diagnosis of autism are eligible for special education

services. However, in China, a child with the same label is

mostly likely to be rejected by public regular schools

because special education services are only available in

special schools, not in regular schools. Public regular

schools are encouraged, but not mandated by law, to accept

children with disabilities, including children with high-

functioning autism.

Making an accurate diagnosis for children with autism

in China is an extremely challenging task. Unlike Western

countries, the diagnosis and first treatment of autism is still

largely based on the medical model in China. Only psy-

chiatrists, and on some occasions, clinical psychologists in

major cities (e.g., Beijing, Shanghai, etc.), can make such a

diagnosis. As a matter of fact, China has only a very small

number of medical doctors who are trained in Psychiatry (it

is estimated there are less than 1,000 across the whole

country), not to mention the proportion among them who

specialize in child psychiatry such as autism. That is why

most children with autism can only receive a diagnosis in

large hospitals in major cities rather than in their local

hospitals. Usually parents take their child to community or

1992 J Autism Dev Disord (2013) 43:1991–2001

123

local hospitals (Children’s Hospitals or Women and Chil-

dren Healthcare Hospital) to see a regular doctor (or

pediatrician) first. Unfortunately, most doctors at this level

fail to identify the problem. In most cases, parents will be

referred to other mental health professionals (such as

clinical psychologists or psychiatrists) located in bigger

cities. Figure 1 presents the pathway for diagnosis of aut-

ism in China.

An accurate diagnosis of ASD in China usually depends

on the parents’ financial abilities and persistency, as well as

the doctors’ diagnostic competency in such a disorder.

Note that licensed psychiatrists are the only mental health

professionals who can provide a mental disease diagnosis

in China, thus officially, they are the only medical pro-

fessionals who can make a diagnosis of autism in children

in this country (Clark and Zhou 2005). However, generally,

there has been a lack of awareness and/or knowledge (i.e.,

expertise) in autism in these professionals in China mainly

due to the lack of undergraduate and graduate training in

this specific area.

In China, the diagnosis process of autism usually

includes the following steps:

1. The doctor interviews the parent(s) (or guardians in

some cases) in order to get some basic information

about the child’s developmental history and symptoms

of concern;

2. The doctor may conduct a structured observation and

some basic multi-component assessments on the child

in the following areas: cognitive abilities, motor skills,

speech and language development, and adaptive

behaviors, etc., in accordance with the child’s individ-

ual needs.

3. Based on the assessment results, if a red flag shows and

there are valid concerns, the doctor will then use

autism-specific screening instruments and diagnostic

criteria to make an official diagnosis.

However, not all diagnostic processes involve all of the

steps mentioned above, depending on the professionals’

individual competence and credentials. Unlike practices in

Western countries, systematic observation of the child in

multiple settings (e.g., school, home and community) is not

commonly conducted in China, nor does the diagnosis

usually involve a multidisciplinary diagnostic team (i.e.,

including pediatrician, child psychiatrist, neurologist, or

other related professionals such as speech and language

pathologist, or occupational therapist). In China, there is a

lack of collaboration in undergraduate or graduate training

in the fields mentioned above. It is also commonly believed

by professionals that blood tests are not necessary or

helpful for the diagnosis of autism in China. The whole

diagnostic process for each case usually lasts for

15–30 min, definitely less than an hour.

As mentioned previously, due to people’s misunder-

standing and misconception, autism is not widely recog-

nized in China. That is also one of the reasons why autism

has not been included into the Chinese Classification and

Diagnosis Criteria of Mental Disorders, 3rd edition

(CCMD-3, Chinese Psychiatry Association 2001) until

recent years. The diagnostic criteria listed in the CCMD-3

for autism were developed on the basis of DSM-IV (APA

1994) and ICD-10th (WHO 1993), and were also catego-

rized under the big umbrella term of Pervasive Develop-

mental Disabilities (PPD). As summarized by Clark and

Zhou (2005), research has found that both the core and

associate symptoms of autism in Chinese children are ‘‘quite

similar’’ (p. 289) to those in children in Western countries.

Professionals have translated and/or adapted many of

the world’s most reliable assessment instruments for the

diagnosis of autism since the 1980s. Today the most widely

used instruments include the Chinese version of the Child

Autism Rating Scale (or CARS, Scholper et al. 1988), the

Autism Behavior Checklist (or ABC, Krug et al. 1980), and

the Chinese revised version of the Checklist for Autism in

Toddlers (CHAT, Baron-Cohen et al. 2000) for young

children. Other diagnostic instruments used by Chinese

professionals include the Chinese versions of the Psycho-

Educational Profile—or C-PEP (PEP, Schopler et al. 1990),

the Autism Diagnostic Observation Schedule (ADOS, Lord

et al. 2003) (not widely used though), as well as the Autism

Diagnostic Interview-Revised (ADI-R, Rutter et al. 2002).

As expected, Chinese culture and social values do have

great impacts on the translation and application of these

Onset of Autism

Symptoms noticed by parents/teachers,

or others

Community/local hospital (Children’s Hospital or Women and Child Healthcare Hospital)

Undiagnosed

(No)

(Yes)

Mental health professionals (Clinical psychologist/Psychiatrist)

in big cities

Diagnosis confirmed

Failed to recognize

Autism tendency

(No)

Fig. 1 Autism diagnostic pathway in China

J Autism Dev Disord (2013) 43:1991–2001 1993

123

assessment tools. Some may question the psychometric

properties of these diagnostic instruments regarding their

use in China. Interestingly, some Chinese colleagues have

reported that the reliability and validity of these translated

or adapted instruments remain as high as the original ones

(e.g., Guo et al. 2002; Yang et al. 1994). Usually the

psychiatrists choose a specific protocol partly due to the

child’s individual needs but mostly based on their access to

these instruments. In the Institute of Mental Health, Beijing

(or Peking) University, School of Medicine, psychiatrists

use the Chinese versions of ABC and CARS most often.

As mentioned previously, the number of individuals

identified as having ASDs has been reported on dramatic

raise in China in recent years. According to the statistics

from the Institute of Mental Health, Beijing University,

School of Medicine, from 1986 to 2001, a total of 1,176

children were diagnosed as having ‘‘early infantile autism’’

at the institute. Among them, 603 children were identified

by the institute between 1999 and 2001 (within only

3 years), accounting for 51 % of the total number of chil-

dren receiving a diagnosis from the institute within the

15-year period. These figures indicate better autism

awareness in parents and a higher prevalence of autism in

China in recent years compared to a decade ago. The sta-

tistics from the same institute also revealed that in China,

the occurrence of autism was approximately 5–9 times

higher in boys than in girls (i.e., 9.59:1), which is much

higher than that in Western countries (i.e., 4:1). One of the

reasons for this might be the fact that many Chinese fam-

ilies value boys over girls; when parents notice abnormal

development in young children, boys are more likely to

receive medical attention.

These parents reported that, in retrospect, most of them

failed to pay sufficient attention to the symptoms of their

children’s atypical patterns of development at an early age

due to their lack of understanding of child development.

Statistics from the same institute indicate that many parents

(41.30 %) began to notice some atypical developmental

signs when their children were between 25 and 36 months

old; while more than one-third (35.10 %) of the parents

reported that they failed to notice the symptoms until their

children were over 3 years old. The data also revealed only

21.36 % of parents began to pursue a diagnosis for their

child before age three, while the majority (78.64 %) did not

do so until their child turned three or older. This indicates

most children have already missed the best time for early

intense behavioral intervention by the time they receive the

diagnosis of autism. In short, although most parents noticed

their children’s abnormal developmental patterns, few

parents took action immediately. Statistics from the same

institute also showed only 9 % of parents began to seek a

diagnosis for their child right after they noticed the atypical

symptoms; the average time gap between noticing the

symptoms and pursuing a diagnosis was as long as

35 months. Table 1 summarizes the data reported above.

There has been a longstanding delay in making such

diagnoses in children in China. In recent years, however,

psychiatrists at the same institute have noticed more and

more parents come to seek a diagnosis for their child at a

younger age—usually before 3 years old. Earlier identifi-

cation and diagnosis of autism symptoms may be partly

due to better awareness of autism in both the general public

(i.e., parents in these cases) and related professionals in the

past decade. Recently, it was reported that there has been

some new research projects focusing on early identification

and diagnosis of autism by a few university-affiliated

medical schools in some major cities in China such as

Beijing and Shanghai.

There are several issues related to the diagnosis of

autism in children in China. First of all, compared to other

career options, being a psychiatrist is certainly not as

appealing or respected as being a physician or a dentist in

terms of social and economic status in China, so there has

been a longstanding, serious shortage of psychiatrists in

this country (Clark and Zhou 2005). In addition, as men-

tioned earlier, since recognition and identification of aut-

ism is relatively new in China, many people including

psychiatrists have never heard of the term autism, not to

mention knowing how to make a diagnosis for a child

affected by such a disorder.

Secondly, there are no routine neuropsychological

screenings for children in China. Although in most places

in China, there is annual physical and developmental

screening test for school-age children and adolescents, only

some basic developmental indicators such as height,

weight, vision and hearing are measured. Children will be

brought to see a doctor only when their parents or relatives

detect an apparent abnormality in cognitive and mental

Table 1 Diagnosis data from the Institute of Mental Health, Beijing University, School of Medicine, between 1986 and 2001

Time (1986–2001) Ratio Atypical symptoms noticed Diagnosed Diagnosis right

after noticing

symptoms

Average time

gap btw sym.

to diag.1986–1998 1999–2001 (B/G) Btw 2 and 3 years [3 years \3 years [3 years

573 (49 %) 603 (51 %) 9.59 : 1 41.3 % 35 % 21.36 % 78.64 % 9 % 35 months

1994 J Autism Dev Disord (2013) 43:1991–2001

123

development (such as apparent impairments in cognition or

language) or if they are seriously ill. However, if the par-

ents or relatives fail to do so, or in some cases, even though

they notice some developmental differences but did not

take the child to the hospital due to financial constraints,

these children are most likely to remain unidentified or

undiagnosed. Most parents hope their children will out-

grow. In China, children with normal or near normal

intelligence displaying serious behavioral challenges in

schools are usually regarded as ‘‘naughty’’, ‘‘having bad

parenting experiences’’ or ‘‘unusual personalities’’, rather

than being referred to as having a disorder.

As a result of misconception and misunderstanding,

there has been very limited policy or legislation to support

either educational research or practices involving children

with autism until recently. Consequentially, education of

children with autism has become a major concern in the

field. Most children with autism are deprived of free and

appropriate educational services due to the fact that:

(a) Many children with autism also have cognitive

impairments at various levels, regular schools believe

it is the responsibility of special schools to teach

children with special needs;

(b) Special schools are established either for children

with sensory impairments (i.e., visual, hearing and

speech), or for children with mild to moderate

cognitive impairments and physical disabilities, so

children with autism, especially those who are high-

functioning (i.e., without significant cognitive and

language impairments), usually fail to receive appro-

priate education they need there.

Obviously, there is an urgent need to change such sit-

uations. The most important and fundamental step that has

been taken since the mid 1980s is the establishment of

related legislation to safeguard the rights of these individ-

uals. The following section will present an overview of

disability-related legislation in China.

Legal Issues

Although new leaders of China have paid more attention to

the improvement of special education since the late 1970s,

the Chinese Central Government did not launch any leg-

islation regarding education of children with disabilities

until in the mid 1980s. To promote universalization of the

9-year compulsory education (i.e., consisting of 6 years of

elementary school and 3 years of middle school), mainly to

increase the number of children (with and without dis-

abilities) attending school across the country, the Chinese

Central Government has made great efforts, especially in

the following two major areas: (a) establishing more new

public regular and special schools; and (b) establishing

related legislation.

As the first important legislation for education since the

founding of new China, the 1986 Compulsory Education

Law (National People’s Congress 1986) is a civil rights law

stating that every child, with or without disabilities, is

entitled to a 9-year compulsory education. For the first time

in the history of China, education for children with dis-

abilities was addressed officially by the law. It is noted that

although the law does not mention ‘‘inclusion’’ directly, it

encourages regular schools to accept children with dis-

abilities into general education classrooms. However, even

though the law encourages (not ‘‘mandates’’) school-age

children with disabilities to receive a free, 9-year com-

pulsory education, it does not specify how to serve these

students, nor does it offer necessary financial supports to

service providers (i.e., local regular or special schools) for

the delivery of related educational services (Wang et al.

1993).

In addition to the 1986 Compulsory Education Law, two

additional pieces of comprehensive legislation involving

individuals with disabilities were initiated in the early

1990s. These included the Law of the People’s Republic of

China on the Protection of Persons with Disabilities (or

LPPD-PRC; National People’s Congress 1990) and the

1994 Regulations on Education for Persons with Disabili-

ties (or REPD; Chinese State Council 1994). The 1990

LPPD-PRC was the first law established to protect and

safeguard the rights of individuals with various disabilities

in China (similar to the Americans with Disability Act,

1990). Both laws reemphasized the implementation of the

9-year compulsory education for students with various

disabilities. In addition, based on the results and experience

of the pilot studies that were carried out in previous years,

the 1994 State Education Commission Number 16 called

for ‘‘Suiban Jiudu’’ (Chinese Pinyin, referring to the

practice of inclusion in Mainland China; for more infor-

mation on this practice, see Huang and Wheeler 2007) as

the major means to deliver educational services for chil-

dren with disabilities nationwide (McCabe 2003).

Please note that although children with autism were not

explicitly excluded in the above legislation, neither were

they mentioned directly (Wang et al. 1993). Researchers

advocating for children with autism argue that, since these

laws are applicable for all children with disabilities, chil-

dren with autism should be implicitly included (McCabe

2003). In summary, the ambiguous status of related legis-

lation is one of the major reasons for the lack of educa-

tional services for school-age children with autism at

various functioning levels (Huang and Wheeler 2007;

McCabe 2003). In spite of this deficiency, the legislation

mentioned above promoted the fast development of special

education for all children with disabilities nationwide in the

J Autism Dev Disord (2013) 43:1991–2001 1995

123

past two decades. Statistics revealed that the enrollment

rate of children with disabilities rose from 6 to 60 % of the

whole population of school-age children with disabilities

between 1987 and 1996 (Deng and Manset 2000).

Treatment Options

In general, current treatments for individuals with autism in

China mainly include medication, sensory integration

training and related therapies, as well as behavior man-

agement (Clark and Zhou 2005). Which treatment option to

choose is usually subject to one of or a combination of the

following factors: the individual’s unique condition, the

availability of treatments, and the family’s financial ability.

It should be pointed out that none of these treatments are

free to families of children with autism in China. At this

point, China does not have a mature social security or

welfare system like what most Western countries do, thus

family financial constraint has become the biggest obstacle

that prevents children with autism from receiving inter-

ventions in China. Very few families can afford the treat-

ments we mentioned here on a regular basis.

Medication

Medication here refers to both traditional Chinese medicine

such as herbs and acupuncture (for a review, see Clark and

Zhou 2005) and modern Western medicines that are used to

manage these children’s hyperactive behavior or to

improve major co-morbid psychiatric symptoms such as

depression and anxiety. Unfortunately, few scientific and

methodologically sound studies have been conducted to

exam the effectiveness of medication in treating children

with autism in the Chinese literature. It is noted that the use

of acupuncture has become a popular form of treatment for

children with autism in recent years. For example, as cited

by Clark and Zhou (2005), Wong (2002) examined the

effects of regular acupuncture treatment in 30 children with

autism and found that the use of acupuncture decreases

both the core (i.e., three major impairments) and associated

(e.g., attention problem, hyperactivity, and temper tan-

trums) symptoms of autism in these children.

Sensory Integration Training and Related Therapies

Regardless of the positive effects medication produce,

researchers in Western countries, however, do not encour-

age the use of medication as the sole treatment option for

children with autism (Tsai 2001). Although it is still

unknown what exactly causes autism, it is certain that aut-

ism is not a simple disease that can be cured by merely

taking medication. Based on the fact that many children

with autism also have various sensory issues, sensory

integration training and related therapies (e.g., massage,

music, and play therapies) have actually become the most

common treatments for children with autism in China

(Clark and Zhou 2005). Despite of the fact that many

researchers in Western countries question the efficacy of

such treatments (Schreibman 2005), some researchers in

China still found positive treatment outcomes in children

with autism after going through these therapies. For

example, Lin and Zhang (1995) found improved adaptive

behaviors in the participants of their study after relaxation

therapy including massage; Su et al. (1999) documented

less serious autism symptoms in the participant in their case

study after music therapy treatment; A more recent study by

Wang (2000) also showed improved overall adaptive

behaviors in 12 participants after sensory integration treat-

ment. However, technically, none of these were scientifi-

cally-designed, or methodologically sound studies and they

all failed to provide evidence of significant difference in

behavioral changes before and after treatment.

Behavior Intervention/Management (Applied Behavior

Analysis)

Despite of the fact that research in Western countries has

proven Applied Behavior Analysis (ABA) to be the most

effective treatment available for children with autism

(Schreibman 2005; Weiss 1999), the use of sound ABA

techniques to treat children with autism however, is not a

common practice in China yet. The key reason behind this

phenomenon is a lack of professionals or researchers who

have expertise in ABA, and in how to use these techniques

to treat children with autism in China. As Clark and Zhou

(2005) pointed out, few well-designed studies in the Chi-

nese literature have successfully determined the effective-

ness of ABA in treating children with ASD, partly because

most studies involved multiple treatment components

(combined behavioral intervention with sensory integration

strategies and medication), or due to the limitation of the

research methodology employed (without control groups to

compare treatment outcomes). For example, Chen et al.

(2003) found that the combination of behavior therapy and

social skill training results in overall improvements (i.e.,

social communication, oral communication, and adaptive

behavior) in 37 % of participants with autism in their study

(as cited by Clark and Zhou 2005). However, they failed to

provide a control group that consists of typically devel-

oping children to compare intervention results.

In summary, providing effective treatments to children

with autism in China is a challenging task that requires

long-term joint efforts from both the researchers and

practitioners, and ongoing policy and financial supports

from both the Central and local governments. It should be

1996 J Autism Dev Disord (2013) 43:1991–2001

123

noted that few researchers or professionals in China plan

systematic treatments for the child with autism based on

the results of their individualized assessment. In other

words, they did not take the child’s individual strengths and

needs into sufficient consideration. In addition, the child’s

personal interests and preferences tend to be overlooked.

Another common practice in China is, as mentioned pre-

viously, that many researchers and professionals still focus

heavily on some treatments that have been proven empir-

ically ineffective in treating children with autism by

Western researchers, such as massage, music, and play

therapies (Clark and Zhou 2005). Thus it is highly rec-

ommended that professionals and/or researchers in China

refer to and learn from evidence-based practices proven

effective and adapt them to treat children with autism,

instead of repeating those treatments that were already

proven ineffective by Western researchers.

Educational Service Providers

For centuries, educational services for children with vari-

ous disabilities, especially those with severe developmental

disabilities like autism, have been absent in China. Due to

financial constraints in educational systems and a serious

lack of experts in the field of special education, as well as

the growing population of children and youth with dis-

abilities, offering every child with special needs an

appropriate public education is still an impossible task in

this largest developing country in the world. Fortunately,

greater efforts have been made in the past decade. More

and more educational opportunities have been established

for children with ASDs in this country. Today children

with autism may receive education provided by (1) public

regular schools, through the practice of inclusion; (2)

public special schools; (3) non-governmental organiza-

tions; and (4) public education centers affiliated with local

hospitals or social welfare department; as well as (5) par-

ents at home.

Public Regular Schools

Today some higher functioning children with autism may

be able to attend local public regular schools through the

practice of inclusion (for a review, see Huang and Wheeler

2007). Suiban Jiudu (Chinese Pinyin), the practice of

inclusion in China, can be literally translated as ‘‘attending

schools in regular classrooms’’, or ‘‘learning in regular

classrooms’’ (Deng and Manset 2000). This practice was

initially developed to implement and promote the 9-year

compulsory education involving children with mild and

moderate disabilities (McCabe 2003).

As Suiban Jiudu has become more common in China,

more educational opportunities have also been established

for children with autism (Huang and Wheeler 2007).

Greater social awareness of autism and persistent parental

advocacy also play important roles in promoting this

practice. According to parent reports, usually personal

connections (e.g., having a friend or relative who works as

either an administrator or a teacher in the school) are the

most important reason for their children’s acceptance by

local regular schools (McCabe 2003).

In practice, students with autism use the same curricu-

lum as their typically developing peers but usually are

exempt from taking standardized tests that are designed for

typically developing students (Huang and Wheeler 2007;

Sun 1990). However, unlike real inclusive practices in

Western countries, no individualized educational program/

plan is created for the student. So Suiban Jiudu is unable to

provide an appropriate education for children with special

needs. The advantage of such practice is parents of children

with autism do not need to pay out of their own pocket for

this educational service since public schools offer free

9-year compulsory education to all children.

The major disadvantage of such a practice is a lack of

individualized instruction and planning, as well as a lack of

systematic mechanism that can properly assess and docu-

ment these students’ progress in terms of behavioral and

academic performance (Huang and Wheeler 2007). It is

obvious that at this point, policy makers in China view

quantity (the number of children with special needs attend-

ing regular school) more important than quality (a free and

appropriate education for all children with special needs

attending regular schools) (Huang and Wheeler 2007). Thus,

more accurately speaking, this practice reflects ‘‘a shortage

of personnel, limited fiscal resources, and facilities in addi-

tion to geographical considerations’’ rather than ‘‘allegiance

to the concept of mainstream’’ (Xu et al. 1995, p. 11).

Currently, the most effective and practical approaches

teaching children with autism in an inclusive classroom are

whole group teaching/instruction and cooperative learning,

followed by individual tutoring (Chen 1997; Deng et al.

2001; McCabe 2003). For example, the teacher may set

different learning objectives and plans from those of typi-

cally developing students for the child with autism who is

included in the regular classroom. He/she may also modify

the curriculum and instruction (e.g., through the use of task

analysis) and learning environments (i.e., providing prior-

ity seating) to accommodate the child’s special needs.

Sometimes the teacher needs to arrange an extra

15–30 min’ individual tutoring (either by the teacher or by

typically developing peers) for the target child after class

(Huang and Wheeler 2007). However, teachers are not

mandated or required to do this extra work. Consequently,

not all teachers are willing to make such efforts.

J Autism Dev Disord (2013) 43:1991–2001 1997

123

Several factors may prevent this practice from further

development. Firstly, some general education teachers may

be reluctant to include children with autism in their

classrooms due to their lack of knowledge in autism (e.g.,

their characteristics and learning styles) (Huang and

Wheeler 2007). In addition, it is common for children with

autism to demonstrate behavior problems in regular class-

rooms, which may distract or interrupt the learning of their

typically developing peers. As a result, some parents of

typically developing students oppose the idea of inclusion

due to the possible negative impacts on their children’s

academic performance (Huang and Wheeler 2007).

Furthermore, regular schools focus solely on academic

learning; they do not provide daily living skill training or

social skill training to children with autism. So although

more and more children with autism have been included in

regular classrooms in recent years, the number is still rel-

atively small compared to the number of children who are

affected by such a disorder. Thus, in summary, public

regular schools are not the major educational providers for

children with autism.

Public Special Schools

Like many countries in the world, children with disabilities

usually go to special schools in China. Most special schools

were established after the mid-1980s, and were exclusively

designed for children with physical disabilities, sensory

impairments including visual, hearing and speech impair-

ments, as well as mild to moderate cognitive disabilities

who are ‘‘teachable’’. The development of special schools

has experienced great progress since the 1990s as the

Chinese Central government pays more attention to the

education of people with disabilities and the local gov-

ernment provides more financial supports. However, such

schools are all located in cities or big towns only. In remote

rural areas, children with disabilities have limited or no

access to such schools. Also, children attending special

schools are segregated from typically developing peers and

community life. Children in special schools not only learn

some basic academic skills, but also receive more daily

living skill training and vocational (career) training.

Many children with both autism and mild to moderate

cognitive impairment go to local special schools, paying a

small amount of money or no money each semester. Mostly

these schools are affordable for parents but again they are

not exactly appropriate for children with autism due to the

lack of knowledge and expertise in autism in the special

education teachers who work in these schools. It is

understandable that some special schools do not want to

include children with autism in their programs simply

because their teachers do not know how to teach these

children, or they have difficulty handling the behavior

problems displayed by children with autism.

On the other hand, some parents do not want to send

their (high-functioning) children with autism and mild or

no cognitive impairments to the special schools because

they found their children can benefit very little from these

special programs that were not designed or specified for

their children. As a result, special schools are not consid-

ered to be the major education providers for children with

autism, either. However, it is still estimated that more

children with autism go to public special schools than to

public regular schools, particularly in urban areas (McCabe

2004).

Non-Governmental Organizations

Based on the above descriptions, obviously, educational

needs of children with autism far exceed services provided

by public regular and special schools in China. As gov-

ernment-supported educational providers fail to meet these

needs, more non-governmental forces begin to play their

important roles on the stage (McCabe 2004). Although

many organizations are unable to register as non-govern-

mental organizations (NGOs) due to the regulations in

China, they are actually real grassroots NGOs according to

‘‘the international sense of the term’’ (McCabe 2004,

p. 160). The first such NGO, Xingxing Yu (i.e., Starry

Rain), was established in 1994 by a mother of a child with

autism. Since then, a growing number of similar NGOs

have been established in the past two decades. Fortunately,

the fast development of these NGOs has created enormous

educational opportunities for children with autism (McC-

abe 2004).

Xingxing Yu is an example of non-profit NGO that

serves families and children with autism. In the past nearly

two decades, Xingxing Yu has provided services to almost

2,000 families of children with autism from different places

throughout China. The services they provide include con-

sultation, assessment and short-term parent training pro-

grams that usually last for 12 weeks. Unlike many other

NGOs, Xingxing Yu is focused more on parent training.

The major purpose of their parent training programs is to

empower parents to become primary interventionists for

their children. Xingxing Yu also offers behavioral inter-

vention programs to children with autism aged between 3

and 12 years old.

Most NGOs provide only direct services to children with

autism, although few also provide parent training like

Xingxing Yu. Services provided by NGOs include sensory

integration therapies, other relaxation therapies such as

music therapy and play therapy, and behavior interventions

using ABA techniques as well as other social skill training.

Given the fact that training backgrounds and experiences of

1998 J Autism Dev Disord (2013) 43:1991–2001

123

the professionals working for these NGOs vary, it is

understandable that the quality of services differs from one

another. For example, although most NGOs claim that they

use ABA techniques, the fact is that actually very few

professionals who work for these organizations have

received formal training in ‘‘real’’ ABA principles and

techniques. Even today, still a large proportion of these

professionals do not have a systematic training in the field

of autism or still lack solid knowledge of real ABA tech-

niques, which directly results in their inability at employ-

ing ABA techniques to treat children with autism. This

may be the major reason why most children with autism

fail to make adequate progress or experience significant

improvements after receiving so-called behavioral inter-

ventions or services from these professionals.

Most NGOs are located in big cities in eastern coastal

regions only. A major proportion of them were established

by parents of children with autism who had received parent

training from quality training programs with good reputa-

tion such as Xingxing Yu, with an attempt to help more

families affected by autism locally. Others might be

developed and managed by former trainers who used to

work for major NGOs such as Xingxing Yu and Yi Lin

(another well-known NGO located in Qingdao, Shandong

province). Note not all NGOs are non-profit: those founded

by former trainers usually run for profit. It is more appro-

priate to consider them to be private, profit-making busi-

ness entities that provide so-called ‘‘semi-ABA therapies’’

to school-age children with autism.

However, all services provided by NGOs need to be

paid, regardless the nature of these service providers (i.e.,

whether they are non-profit or profit-making NGOs). In

general, parents need to pay ¥800 RMB (note: RMB is the

name of Chinese currency) (around $150 USD) to ¥3,500

RMB (slightly more than $500 USD) per month for direct

interventions on their child or for parent training, or for

both in some cases. The cost varies depending on the

nature of the NGOs, types of services received and regions

where the NGOs are located. Unfortunately, these expen-

sive services are beyond most families’ financial abilities,

considering the fact that many families’ monthly income in

China is less than ¥3,000 RMB (that is approximately $500

USD).

In addition, as mentioned previously, China does not

have a mature social security system that will assure basic

living expenses of low-income families living in remote

countryside. Thus most families find these services unaf-

fordable. Only families of children with above-average

financial abilities (similar to upper-middle-class income in

the USA) are able to pay for such services. In general, it is

not very likely for children with autism from low-income

families or from remote rural areas to have access to any of

those treatment options mentioned previously. With rapid

developments in the past decade, NGOs are believed to

have become the major service providers for children with

autism in China.

Public Education Centers/Schools

In addition to public regular and special schools as well as

NGOs, there are also some public education centers and/or

schools affiliated with state-run hospitals or social welfare

departments for children with autism at the local level.

Similar to NGOs, these centers/schools provide short-term

(from several weeks to several months) educational pro-

grams to families and children affected by autism. Some of

these programs are free to parents, but most are not,

depending on the nature of the programs. In addition to

similar services provided by NGOs, most centers affiliated

with state-run hospitals also monitor the medical needs of

children with autism. Examples of such centers include the

Child Development and Behavior Center in Guangzhou,

South China (affiliated to Zhongshan University, School of

Medicine), and the Nanjing Child Mental Health Research

Center in Nanjing, East China (affiliated to Nanjing Brain

Hospital) (McCabe 2004), as well as Wucailu (or Colored

Deer) Children Rehabilitation and Training Center in

Beijing, North China (collaborating with the Institute of

Mental Health, Beijing University, Medical School).

Parents at Home

In spite of the existing educational opportunities mentioned

above, there are still many children with autism who have

no access to any type of treatment or intervention in China.

Actually the majority of this population is hidden at home,

especially those who with moderate to severe/profound

autism symptoms, or children with apparent challenging

behaviors, those from low social-economic status families,

and those who are living in remote rural areas. As men-

tioned previously, most children with severe/profound

disabilities including early infantile autism are kept away

from both regular and special schools in China.

Due to a lack of understanding of atypical human

development and cultural barriers in this country, parents

tend to feel shameful of having a child with special needs

such as autism. The best way for them to cover such a fact

is to hide their children from the public. While some par-

ents desperately want to have their children with autism

accepted by local schools, others still hold the belief that

teaching academic knowledge and skills to their children

with profound disabilities is not worth the efforts. How-

ever, making these children out of the sight of the general

public does not mean that they are out of the parents’ mind.

Unlike professional educational providers who focus on

behavioral and academic needs of children with autism,

J Autism Dev Disord (2013) 43:1991–2001 1999

123

most parents have to be realistic. Worrying that no one will

be willing to take care of their children with autism once

they pass away, these parents have to teach their children

basic life skills (including self-care skills and daily living

skills, such as personal grooming and hygiene, cooking for

self and washing one’s own clothes) at home, with a hope

that they will be able to lead an independence life in

adulthood.

Conclusion

In short, providing every child with autism with an indi-

vidualized and appropriate education/intervention plan is

extremely challenging in China at this point of time. In the

past two decades, the parents’ persistent advocacy and

tireless efforts have successfully promoted the slow but far-

reaching development of the field: social awareness of

autism has increased dramatically, and more intervention

and educational opportunities have been created. It is the

responsibility of the whole society rather than just the

parents’ obligation to improve both the quality of education

and quality of life for children with autism (Huang and

Wheeler 2007). Fortunately, we have taken our first steps

of a long journey.

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