Infants & Young Children:
Resources and Services for Children With Autism Spectrum Disorders and Their Families in China
Song, Zheng MD, MPH; Giannotti, Tierney MPA; Reichow, Brian PhD
A.J. Pappanikou Center for Excellence in Developmental Disabilities Research, Education and Service, University of Connecticut Health Center, Farmington.
Correspondence: Brian Reichow, PhD, A.J. Pappanikou Center of Excellence on Developmental Disabilities Research, Education and Service, University of Connecticut Health Center, 263 Farmington Ave., MC 6222, Farmington, CT 06030 (email@example.com).
This work was funded in part through the Leadership in Education in Neurodevelopmental and Related Disabilities program from the Health Resource Services Administration Bureau of Maternal and Child Health (5T73MC11046-03-00) and by the University Centers of Excellence on Developmental Disabilities grant from the American University Centers on Disability (90DD0650).
The authors declare no conflict of interest.
Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal's Web site (www.iycjournal.com).
Although there is growing recognition of the global impact of autism spectrum disorders, much less is known about the condition outside of North America and Western Europe. In this study, we surveyed 49 parents who had a child with an autism spectrum disorder in China and about their experiences with diagnosis, intervention, and resource support. Our results showed that although parents first noticed signs of autism in the second year of life, diagnosis was delayed almost 1 year, with early intervention services delayed, on average, by an additional 6 months. Furthermore, we found that parents reported receiving the greatest amount of support from family and friends, with little to no governmental support.
AUTISM SPECTRUM DISORDERS (ASDs) are a group of developmental disorders that can cause significant social, communication, and behavioral challenges. Leo Kanner (1943) and Hans Asperger (1944) first described the conditions in the United States and European medical literatures in the early 1940s. Although once considered a rare condition with prevalence estimates of no more than 5 per 10,000 (Fombonne, 2005; Newschaffer et al., 2007), recent worldwide prevalence estimates now exceed 100 in 10,000 (see Elsabbagh et al., 2012). To date, China has not had a nationwide epidemiological study of the prevalence of children with ASDs; previous studies reported only the estimated prevalence in some provinces (Guo, 2004; Luo & Ling, 2000; Wong & Hui, 2008; Yang, Hu, & Han, 2007; Zhang, Xu, & Zhang, 2005). Using the prevalence of children with ASDs in Hong Kong reported by Wong and Hui (2008; 16.1 per 10,000 among children 0–14 years of age) and the 2008 China census data, which show that, in 2008, the population of children from newborn to 14 years old was 251,660,000, we can estimate that more than 405,172 children 0–14 years of age in China had ASD in 2008.
In the United States, infants and toddlers with disabilities, younger than 3 years, are eligible for Part C of Individuals with Disabilities Education Improvement Act (IDEA) of 2004, which provides early intervention services to address the developmental needs of children with disabilities or delays in one or more developmental areas: physical, cognitive, communication, social–emotional, and adaptive development. Part B of IDEA requires states that receive federal money to provide education and related services for children 3–21 years of age with disabilities, including a free appropriate public education in the least restrictive environment as outlined in the child's individualized education program. When entering adulthood, youth with ASD are prepared for transition to a variety of settings, including, but not limited to, moving away from home, furthering their education, working, and active participation in the community (Hendricks & Wehman, 2009). Thereby, children with ASD in the United States have the right to be educated in the same settings with their typically developing peers and schools have a mandate to provide appropriate accommodations that support student participation in school activities and prepare student for life after school ends. Although there is no cure for ASD, children with ASD can develop important skills in social interaction, communication, and behaviors, with the greatest gains occurring when evidence-based interventions are began as early as possible (Dawson, 2008; National Research Council, 2001). Previous studies have shown that early intensive behavioral interventions for autism are associated with significant gains in IQ scores and language development, improved social behavior, and decreased symptoms of autism (e.g., Dawson et al., 2010; Reichow, Barton, Boyd, & Hume, 2012; Rogers & Vismara, 2008).
Compared with their peers in developed countries, children with ASD in China are not as fortunate in terms of getting diagnosis, intervention, inclusion, and legal protection, and families receive fewer resources and support from society than in other developed countries (e.g., Su, Long, Chen & Fang, 2013). For the majority of these children, diagnoses are delayed for a long time or never occur (Han & Xi, 2001; Jiu et al., 2004; Zen et al., 2004). China does not have a law such as IDEA that mandates children with ASD and their families receive evidence-based early intervention services. Although the right to have 9 years of elementary and middle school education for people with disabilities is protected by law, China did not consider ASD a form of disability until 2006, and there is no explicit legal protection for children with ASD to have equal education (Wang, 2009). Moreover, the infrastructure needed to provide evidence-based interventions is lacking in all but the largest cities and even then are staffed by people without sufficient professional training (Li, Bao, & Ma, 2002). Because of the high cost of private programs, few families can afford long-term intervention programs, leaving them to become the primary treatment providers for their children. Unfortunately, these parents do not receive adequate training and have difficulty locating information on how best to care for their children with ASD (Lu & Gao, 2005; Zen et al., 2004). Most children with ASD receive their education at special schools for children with mental illness or at home, as they are not welcomed in schools for children who are typically developing because it is feared that they may interrupt the educational activities of the other students (Gao, 2005). Thus, inclusion, considered a fundamental human right, is merely a dream for children with ASDs and their families in China.
Most of the existing literature on children with ASD in China focuses on biological mechanisms, reviews of autism-related theories, diagnostic or interventional methods originated from Western countries, or investigations of the validity, reliability, and efficacy of using these theories or methods in China. Few articles have examined what happens once a child receives a diagnosis of ASD in China—especially the financial, educational, and legal resources as well as emotional supports that are available for them and their families (cf., Su et al., 2013). To this end, we sought to investigate (a) how ASD is diagnosed in China, (b) what interventions are available in China for children with ASD, and (c) what resources are currently available and what resources may be need in the future for children with ASD and their families in China.
Our sample included 49 parents with a child with ASD. We contacted the parents through Beijing Star and Rain, which is the oldest nongovernmental organization (NGO) providing early intervention services to children with ASD in China, including 45 mothers (92%) and 4 fathers (8%). The majority of the families had children who were boys (90%) with a mean age of 4.6 years (SD = 1.1). Seventy-five percent of the children eventually received a diagnosis of autism, and 6% of the children received a diagnosis of pervasive developmental disorder, not otherwise specified; parents reported the remaining diagnoses as possibility of autism, atypical autism, or autistic development deficit. The mean age of parents in the sample was 33.9 years (SD = 4.6; median = 33). More than half of the parents had attended or completed college (57%), and the average yearly income, in U.S. dollars, was $9,978 (SD = $25,608; median = $5,274; exchange rate at the time of study was US $1 = 6.826 ¥). No family in the study was currently receiving any subsidy from the government. On average, the families lived greater than 600 miles from the NGO (M = 615.9, SD = 396.9; median = 560.2).
Measures and data analyses
A survey, first written in English and then translated into Chinese, was designed to collect data from our participants; the surveys can be found in Supplemental Digital Content 1 and 2 for the English (Appendix 1 available at http://links.lww.com/IYC/A0) and Chinese surveys (Appendix 2 available at http://links.lww.com/IYC/A1), respectively. The survey contained 28 questions that gathered information about (a) diagnostic history, (b) intervention history, (c) resources (both currently available and ones that may be needed in the future). Beijing Star and Rain distributed and collected the surveys from the parents in China. Parents were provided with 20 ¥ (US $3) as compensation for their participation. Beijing Star and Rain then scanned the survey results and delivered the completed surveys to the researcher electronically. We used descriptive analyses to summarize data from the surveys. We then conducted exploratory analyses using t tests to examine the relationship between key variables and potential barriers to services and resources.
Parents reported that early signs of ASD were first noticed by parents (78%) or relatives (14%) before the child's second birthday (M = 21.3 months, SD = 6.8 months). The most common early signs included difficulties with language (88%), social interaction (74%), and behavioral problems (55%). Diagnosis of an ASD was, on average, obtained 12 months after the early signs were recognized (M = 33.0, SD = 8.0). Mean distance traveled to obtain a diagnosis was 405 km (SD = 421 km). Children whose parents saw health care providers immediately after noticing early signs had a significantly shorter delay in obtaining a diagnosis, t(48) = 2.39; p = .02, than for children whose caregivers did not seek immediate care. The most common reasons parents gave for not sending their children to health care providers when early signs were observed included the following: parents being told their child was alright (51%); parents feeling their child was okay (39%); parents wanting to wait and observe more (50%); and parents feeling it was too expensive or too far to travel to obtain medical attention (38%). Related to diagnosis, more than half of the respondents felt that their children (73%) and their families (57%) had been discriminated against because of the diagnosis of ASD.
The mean age at which children started early intervention was 38.8 months (SD = 12.0 months), which was, on average, 6.4 months (SD = 7.1 months) after they received a diagnosis of ASD and 17.4 months (SD = 12.5 months) after the early signs of ASD were noticed. There were no statistically significant differences in interventions received between children whose parents sent them to health care providers as soon as early signs were noticed and children whose parents did not do so, for the time interval between receiving early intervention and getting a diagnosis, t(48) = 0.07, p = .95, and the time interval between receiving first noticing early signs and beginning early intervention, t(48) = 1.67, p = .10. According to the parents' reports, the most common early intervention programs children participated in were applied behavior analysis (57%), sensory integration therapy (27%), and speech–language therapy (12%).
Resources and support
As shown in Table 1, nearly all parents (46/49; 94%) disagreed with the statement that the Chinese government provides enough resources to help their families. Thirty-one families (63%) reported that they had never received any financial, educational, or legal resources from the government. Thirteen families (27%) reported receiving financial support from relatives, and six families (12%) reported receiving financial support from friends; families receiving such support reported high levels of satisfaction with the support they were receiving. When queried about future resources, most parents expected to have a subsidy from the government (92%), parenting training (88%), public school inclusion (86%), and legal protection (82%). As shown in the table, parents were more likely to receive emotional support from peer parents (71%), relatives (49%), and their friends (47%) than from people in the community (10%). Almost all the parents (98%) expected a better understanding and respect from the community in the future.
These data elucidate the hardships faced by children with ASD and their families in China. With the dramatic economic development experienced in China over the past two decades, the lives of many people with disabilities in China have improved tremendously. This is likely due to several factors, including (a) the government has implemented several 5-year plans since 1991 to improve the quality of life for people with disabilities; (b) many individuals with disabilities now have rights that are protected by law; (c) most children with disabilities now have the right to go to public special schools; (d) many individuals with disabilities are now eligible for government subsidies; and (e) the term can ji ren (translation: persons with disabilities) is now commonly used in the official documents and by the general public to refer to individuals with disabilities, who were commonly regarded as can fei (the handicapped and useless) before the early 1980s (Wang, 2009). However, the lives of children with ASD and their families have not improved dramatically over the past decade. Our findings, corroborated by the findings of Su et al. (2013), which showed significant delays in obtaining a diagnosis and intervention services as well as the need for increased services and knowledge for parents of children with ASD in a different sample of families from China, highlight this concern. The similarities of findings suggest the need for improvements related to diagnosis, intervention services, and other support services for children with ASD and their families in China. In this section, we discuss our findings as they relate to barriers that could be hindering progress in China and provide suggestions for overcoming these barriers to provide the most effective diagnosis, intervention, and services for children with ASD in China.
Our results suggest that children with ASD in China are not receiving diagnoses at the earliest possible time. Diagnosis of ASD can be made as early as 18 months or even younger; however, in our sample, many children did not receive diagnoses of ASD until they were closer to 36 months old. Although early signs and problems are being noticed by parents or other caretakers (e.g., grandparents) during the first year of life, few parents are taking their children to see a doctor. By the second year of life, the child's delay in language development adds to parents' worry, but diagnosis is delayed by nearly 1 year to the child's third birthday. There are several possible reasons for delay in diagnosis. First, there is the possibility of parental denial, which is complicated by the birth control policy in China leading to huge expectations for their children—wang zi cheng long, wang nv cheng feng (meaning a father or mother is so thirsty for the success of his or her child that he or she wishes the child will become a dragon or phoenix in the future). A related possibility is that because of the birth control policies, parents usually have no former parenting experience to distinguish between typical and delayed development and might miss the earliest warning signs of delayed development. Another reason could be the traditional Chinese belief of gui ren yu chi, meaning language delay in children, especially boys, could be a sign of an extraordinary gift or good fortune in the future, so parents may consider or be told by their parents or friends that their son's language delay is typical or a sign of giftedness. In addition, it is common for pediatricians to misdiagnose ASD because they receive little to no training on ASD in medical school. Finally, seeing a psychologist or psychiatrist is still severely stigmatized in China; people usually consider seeing such specialists as equivalent to having mental illness, thereby reducing the likelihood that parents will seek such care.
Although changes in the health care structure in 2006 by the Chinese government should help reduce the age at which children receive a diagnosis of ASD, more needs to be done to ensure that children with ASD are identified at the earliest age and given evidence-based treatments when the brain is still in stages of great plasticity (Dawson, 2008). To help decrease the average age of diagnosis for children, we offer the following suggestions: First, community workers need to be trained in early recognition of the signs of ASDs, which can be aided with the use of Level 1 screeners such as the M-CHAT (Modified Checklist for Autism in Toddlers), which has been translated into Chinese (Wong et al., 2004). Second, professional organizations in China that provide care and/or identify children as having ASD need to agree on practice parameters for screening and diagnostic procedures.
Barriers to evidence-based early intervention services also need to improve in China. Once diagnoses are made, health care providers frequently recommend early intervention NGOs or on-site intervention programs. However, our findings highlight a lack of universal access to such programs, which is further complicated by the lack of government programs. As such, the NGOs are an important source of day care and preschool education for children with ASD, who are usually rejected by public schools. In many cases, early intervention professionals work with both children and their parents in an effort to teach parents how to work with their children at home. Intervention provided by parents is a very important resource for children with ASD in China because organization-based intervention is not guaranteed for an extended period of time because of age limitations (the majority of intervention programs provided by these organizations are only for children before school age), long waiting lists, or financial issues. Therefore, successfully communicating with parents and helping them understand the nature of ASD is critical. Likewise, ensuring that parents provide therapy to their children with high fidelity is also important. Except for special education program graduates, who may have some very limited knowledge of ASD, most early intervention professionals have no formal training; no academic program for ASD intervention is available in China. To ensure that children with ASD receive appropriate treatment, increased training and knowledge will need to be provided.
Increased training and knowledge are also needed around issues of inclusion. Given the lack of clear legal protections, most children with ASD stay at home when they reach school age. China must strive to educate children with all disabilities, including ASD, in settings with their typical peers. In China, there is legislation concerning the education of people with disabilities (Wang, 2009), including the Compulsory Education Law of the People's Republic of China (Ministry of Education of the People's Republic of China, 2006), which requires local governments provide 9 years of elementary and middle school education to all children (i.e., those with typical development and children who have disabilities). Unfortunately, education for children with severe disabilities (including ASD) is not explicitly mandated, and those with severe disabilities are often refused educational services. Inclusion and community participation are considered a human right (United Nations, 2009), and changes in China's educational system are needed to ensure that all children, including those with ASD, have access to active participation in inclusive settings.
Resources and support
We also found a need for greater availability of resources and better support structure for the families that have children with ASD in China. Most respondents in our survey indicated receiving no governmental support. However, the situation might be improving, albeit at a slow pace. In 2006, the Chinese government officially included children with ASD under the umbrella of people with disabilities, which allowed families of children with ASD to receive government subsidies (e.g., in Beijing, these children could get 6,000 RMB (US $880) per year until 7 years of age). In addition, the government has begun to establish universal health care insurance in cities, which, in some instances, provides funding for early intervention services. However, service provision for autism intervention is not universal, so even families living in more developed areas still have to pay out of pocket for early intervention, especially for such services provided by NGOs. Moreover, as a result of inequitable economic developments, subsidy policies, and health care insurance policies, children with ASD and their families in rural areas have poorer access to early intervention, education, and autism-related information. Although it is important for the government to take the lead in supporting individuals with ASD, support from other sectors is also needed. These should include, but not be limited to, some of the following: (a) an increased emphasis on understanding and overcoming barriers to early identification; (b) standardization of evidence-based assessment and evaluation services; and (c) an increased need to ensure that early intervention services are logistically and financially accessible to all families. Finally, greater efforts are also needed to make health care (including early intervention) available, affordable, and accessible for children with ASD, which will help ensure that children with ASD have the support necessary to make optimal progress and achieve best outcomes.
In addition to increased governmental support, our respondents indicated a desire to have increased social support and a better understanding from the community of what it is like to raise a child with an ASD in China. Parents are under great pressures from extended family and society, which often lead them to feel shameful and guilty for having a child with disability. Greater attention is needed to give parents a better understanding of the characteristics of ASD, the advantages of early intervention, and ways to facilitate collaboration for care of their child. Moreover, children with disabilities are often considered a burden to society in China (Wang, 2009). In China, there are great misunderstandings about disabilities and specifically ASD. With greater community awareness and education, which can be aided with community inclusion, parents will have greater support, which would hopefully lead to less discrimination.
Identifying, treating, and supporting persons with ASD and their families remain both a social and medical issue in China, for which the government plays an important role. The government has a responsibility to change perspectives toward people with disabilities that lead to their full participation in society on an equal basis with others. Following its endeavor to promote a cohesive society in recent years, the government needs to continue its effort to advocate social justice in this era of great social transformation in China. Collaborative efforts among the policy makers, health care providers, school educators, researchers, and parents are urgently needed to make sure that children with ASD in China have equal access to quality health care, education, and social acceptance as their peers who are typically developing.
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ASD; autism; China; diagnosis; early intervention; families
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