Care, rehabilitation and education for autistic children in Vietnam

JOURNAL OF SCIENCE OF HNUE Interdisciplinary Science, 2013, Vol. 58, No. 5, pp. 110-119 This paper is available online at CARE, REHABILITATION AND EDUCATION FOR AUTISTIC CHILDREN IN VIETNAM Nguyen Thị Hoang Yen The Vietnam National Institute of Educational Sciences Abstract. Autism is a social problem in Vietnam but it is little known and few research projects in this area have been conducted. Individuals, families, organizations and society are to help children with autism by detecting the problem as soon as possible and carrying out early intervention. However, government policies regarding children with autism are limited and an education and intervention service system is not in place. Very few Vietnamese autistic children have access to special education are few. It is the purpose of this paper to illuminate the many problems that are related to autism, all of which require additional study and government funding to support young children with autism and their families, as well as provide treatment and education services to meet the specific needs of autistic children. Keywords: Care, Vietnamese autistic children, education, rehabilitation. 1. Introduction Autism is a common developmental disorder in children. Autistic children experience slow development of social relationships, language, communication and learning that is manifested as behavior disorders which affect their family and society [8]. Autism has become a social problem and is widespread in many countries but it is most commonly recognized in Western countries such as the UK, the U.S and Australia. However, in Vietnam autism is just lately being recognized and little research in this field has been conducted. Although disabled children now benefit to some degree from governmental policies and social welfare this is quite limited. In fact, a special education and intervention service system do not yet exist. Even in the capital city, Hanoi, and the business center of the country, Ho Chi Minh City, few autistic children have been identified and fewer still receive special education. Received February 15, 2013. Accepted May 8, 2013. Contact Nguyen Thị Hoang Yen, e-mail address: nguyenhoangyen@vnies.edu.vn 110 Care, rehabilitation and education for autistic children in Vietnam 2. Content 2.1. The number of autistic children in Vietnam There is almost no data on the incidence or prevalence of autism in Vietnam. Numbers from the Rehabilitation Department of the Vietnam National Hospital of Pediatrics show that from 2000-2007 number of children who were diagnosed and treated for autism increased by 50 times. To confuse the matter, it also shows that the number of children treated in 2007 increased by 33 times in comparison to that of 2000. From 2000 to 2004, the number of children recognized to be autistic increased 122%while from 2004 to 2007 the increase was 268% [2]. According to the data provided by the VietnamNational Hospital of Pediatrics in Ho Chi Minh City, the hospital treated 2 children with autism in 2000, 170 in 2004, and 324 autistic children in 2008. Of those autistic children in 2008, 110 children were diagnosed with typical autism, 206 with atypical autism and 8 with Asperger syndrome are 8 [5] When the NGO Plan carried out their ‘Caring and Education for Disabled Children in one district in Hanoi, 733 disabled children were identified, 512 disabled children helped to reach recovery, 10% of the disabled children were autistic, 6% were retarded and the rest were classified as ‘other’ [3]. 2.2. Early detection and diagnosis of autistic children in Vietnam In many countries, people feel that early detection of autism is very important. They understand that with early detection and special care, autistic children are more likely to be able to function normally in society. Most pediatricians in Vietnam do not have good understanding of what autism is and they are unable to make a diagnosis of this problem. Therefore, very few children are recognized as being autistic prior to the age of 36 months. Of the autistic children who were diagnosed and treated by the Vietnam National Hospital of Pediatrics, 43.86% were diagnosed ‘late’. 2.3. Developmental evaluation and educational plan for children with autism The survey has revealed that there is a need for developmental evaluation in order to plan how best to educate autistic children in Hanoi, Ho Chi Minh City and Da Nang. At this time, autistic children’s parents, examiners and managers state that there is no understanding of what such a developmental evaluation might be or how it could be conducted. Developmental evaluations done prior to the creation of individual educational plans is neither effective nor does it meet the needs of the parents and families of autistic children. The forms, methods and developmental evaluation tools for children with autism are poor and not unified across localities and implementing institutions, and this certainly affects the prospects for educating autistic children in our country today. 111 Nguyen Thi Hoang Yen However, examiners, administrators and parents are aware of the importance of developmental evaluation in order to plan education for children with autism. Hence, it is necessary to build a system with sufficient and unified development evaluation and educational counseling for autistic children. At the same time, it’s necessary to improve the training of staff members who evaluate potentially autistic children. This is essential and an urgent at this time. Achieving this bottom line step will eventually raise the awareness of parents and teachers in the early detection of autism, educating autistic children and improve the quality of evaluation service and interventions for children with autism. This will lead to improved care, protection and education of children with autism in our country. 2.4. Early intervention, education, therapy for autistic children in Vietnam The detection and study of autism spectrum disorders, public education and treatment for children with autism has been carried out abroad for many years using a variety of methods. In fact, autism is a complex of disorders, manifested by many difficulties both physical (especially the senses) and of the spirit. Educating autistic children is usually associated with therapy activities. Some treatments and education have been designed specifically for the children with autism spectrum disorder and a number of methods have been designed for children with different symptoms and can be adapted to work with children all along the autism spectrum. However, in Vietnam, the only form of attention that is given to autistic children has been in the area of health care. Recently, special education for autistic children is being looked into. In Hanoi, a few years back, there were a few ‘schools’ and autistic childcare centers, however, only a few autistic children were involved, the expense was great and the focus was on caring for these children outside of the home. Education these children was not the primary interest and was not been carried out in a coordinated or effective manner. In September 2002, about 40 families with autistic children formed a club under the auspices of the Center for Training and Special Education Development - Hanoi University of Teacher Education. This was not long-lived. Today, in Vietnam’s largest cities, centers or schools that are to care for autism spectrum children exist to meet the increasing demand for early interventions services and educating autistic children. An early intervention operation began in Vietnam in the 90s and it’s said that early intervention is now part of the training program for those studying special education. In fact, early intervention centers and schools, and educational care institutions for disabled children in general and autistic children in particular children are indispensable care, education and therapy programs. Autism was first named and therefore identified in the middle of the last century. In Vietnam, early intervention for children with disabilities in general and autistic children 112 Care, rehabilitation and education for autistic children in Vietnam in particular has progressed. The establishment of the Hanoi Parents Club of autistic children in October 2002 was a first step and therefore touted as extremely significant and important to any future development of intervention. In Vietnam today, the early intervention model used at the center and at inclusive preschools is somewhat known. Furthermore, besides these government run schools and centers, many private schools have been established, most of these in Hanoi and Ho Chi Minh City. Outside of these big cities, there are no special schools or centers for children with autism and therefore no identification or care is possible for autistic children unless they are born to a very wealthy family. This is life in Vietnam today when it comes to special education. After looking at what could be seen of the early interventions model in Hanoi, Da Nang and Ho Chi Minh City, we can draw the following general conclusions: - Achievements:+ There has been an increase in the use of the early intervention model for autistic children by both state agencies and the private sector. + The intervention institutions employ teachers and therapists, they’ve acquired teaching equipment and they have contact with agencies, parents and other schools. + The areas where institutions have been successful are: the diagnosis and evaluation of disabilities and counseling for the families of disabled children regarding care, education and financial assistance (little is available). - Limitations:+ There is no one recognized model of early intervention activities for children with autism. + New facilities do not provide for the basic needs of autistic children and their families. Both capital and professional expertise must become available before any improvements regarding early intervention programs for autistic children with autism can be expected to take place. + Families with autistic children are generally unaware of the nature of their child’s problem and their ability to contact government agencies is limited or non-existent. Their ability to receive assistance is even more remote. + The facilities that deal with autistic children have little contact with other agencies or institutions in the medical field and what each facility does is generally not known to others offering this service. 2.5. Research on the families of autistic children in Vietnam In Vietnam, it is the family that cares for and educates children with disabilities in general and autistic children in particular. While studies on children with developmental disorders, including autism, have been done in Vietnam, little is known of the problems and needs of the families of these children. Thus, it is very important that such basic research be done before any preparation to provide services or support children with developmental disorders and their families be considered. From 3/2009 to 2/2010, one study entitled “Support for families with disabled children in Asia” was conducted, in part in Hanoi and Ho Chi Minh City, Vietnam. 113 Nguyen Thi Hoang Yen 2.5.1. Objectives of Study - Identify the needs of the families with developmental disorder children at pre-school age and school age. - Provide a description of early detection and intervention and identify related factors for children with developmental disorders. - Explore the perception of parents towards current support programs for children with developmental disorders. 2.5.2. Research methodology - Overall study design: Self-administered questionnaire. - Sample: 254 parents of children diagnosed with a developmental disorder, consisting of 154 parents from Hope Center No 1, the Sea Star Center, the Khanh Tam Center and the Light Star Center in Hanoi and 100 parents from the Binh Minh Special School, the Gia Dinh School, the Dream School and the Suong Mai Kindergarten in Ho Chi Minh City. - Data collection: conducted by HNUE and HCM City University of Pedagogy faculty members. - Data analysis: Epidata software. Data were entered twice (double entry) to ensure accuracy. Data was then were transferred into SPSS data files for analysis. SPSS 16.0 software was used for data analysis 2.5.3. Research findings Table 1. Rate of autistic children Characteristics Ha Noi Ho Chi Minh Other provinces Total Freq Rate (%) Freq Rate (%) Freq Rate (%) Freq Rate (%) Child’s Gender Male 115 81.6 76 79.2 14 100 205 81.7 Female 26 18.4 20 20.8 0 0 46 18.3 Age Categories *** <6 year-old 125 87.4 63 66.3 13 100 201 80.1 >6 year-old 18 12.6 32 33.7 0 0 50 19.9 - Institutions caring of autistic children: - Parents’ occupations: + 97% of the fathers and 90% of the mothers were working. + 30% of the fathers and 24% of the mothers were highly educated (Technicians/Doctors/Researchers, etc) + 20.4% of the fathers and 11.7% of the mothers worked in industry. + 13.6% of the fathers and 23.1% of the mothers were government officers/officials (in the GO), 14.4% of the fathers and 12.6% of the mothers worked in the commerce/service sector. 114 Care, rehabilitation and education for autistic children in Vietnam Diagram 1. Institutions caring of autistic children Diagram 2. Parents’ occupations - Family economic conditions: + 51.8% of the households had an economic status that was good (10% good and 41.8% quite good). + 48.2% of the households had an economic status that was not good (10% hard and 38.2% a bit hard). - The persons who take care of the children: caring for children with disabilities are mostly mothers (75%). Only 7% of the fathers were primary caregivers while grandparents account for only 7.3%. - The burden and anxiety when caring for children with disabilities: Finding a friend 115 Nguyen Thi Hoang Yen (55.3%), care for the child when the caregiver steps out of the home (42.3%), finding an available institution (44.7%), finding an educational specialist (40%), feeding the child (35.8%) and finding any kind of available service (33.7%) were the most common burdens or anxieties identified by a parent who is caring for a disabled child. - Support expected: + Most of the parents wished that the government would give them an allowance for their special needs child (84%), many wished that their medical bills would be paid for (45.4%), most wished for daycare service for children with special need (67.9%) and having a helper at home (61.3%). Most also wished for better child care centers (81%) and 49% of the parents wished that there was a larger network of social workers and consultants. + Desire to receive support through intervention programs: Parents stressed that they wanted more guidance on how to work with their children (77%), they wanted financial support (69%), they wished their child could receive more therapy (41%), and 41% wished there were more organization related/devoted to children with disabilities (such organizations are usually part of some branch of the government). - Early detection and early diagnosis of a disability: + The number of children with a disability that was detected before the age of 2 was 23.5%, 76.5% were detected after they were 2. And then there’s this other statistic: The majority of children were diagnosed with a disability after they were 2 years old (75.7%) and 24.4% were diagnosed before the age of 2. + Mothers were the first to recognize the child’s developmental delay or disability (65.5% of the cases), followed was father (9.9% of the cases). Doctors recognized it in only 4%. Teachers at kindergartens/daycare centers were even more oblivious with 3.6%. + The initial diagnosis of "developmental delay" or "disability" was a hospital or medical center (56.7%), while 7.5% and 8% were diagnosed as such at health care centers and kindergartens respectively. + The mood and reaction of parents after receiving the diagnosis of the child’s disability varied: 51.6% expressed shock, 73.2% worried about their child’s future, 72.8% thought of how their child could become normal and 76% thought about how their child could be healed. Only 10% reported they did not accept the diagnosis. - Early intervention and education for the children: - Intervention age: Intervention period: - 45% of the children with developmental disorders received intervention before they were 3 years old (11.8% when they were 1-2 years old and 33.1% when they were 2-3 years old), 20.5% received intervention when the child was 3 - 4 years old and about 16% after the age of 4. - Types of intervention: 68% of children received intervention in daily life, 64% received behavioral therapy, 54% played therapeutic games, 48% received sensory therapy and/or sound therapy, 30% had music therapy, 19.9% craft therapy and 2.8% received no form of therapy. 116 Care, rehabilitation and education for autistic children in Vietnam Table 2. Early intervention Early in intervention Freq (N) Percent (%) Yes 213 83.9 No 33 13.0 Place providing early intervention/early education program Free public training institution 6 2.8 Paidpublic training institution 13 6.0 Private training institution 55 25.6 Regular class of kindergartens 15 7 Special class of kindergartens 25 11.6 Special kindergartens 25 11.6 Hospital 32 14.9 Counseling/guidance center 24 11.2 Home 5 2.3 Other 15 7.0 Theraphy types Group therapy 16 7.5 Individual therapy 58 27.1 Both 140 65.4 Table 3. Early intervention programs Burdens Good economic Hard Economic Total Time 56,0 63,0 59,3 Finance 26,6 67,0 45,9 Man power 25,7 33,0 29,2 Living arrangement 42,2 44,0 43,1 Little or no burden 19,3 9,0 14,4 - Who aids in the child’s development: Experts at counseling centers (22.8%), school teachers (22.4%), psychologist (16.9%) and physicians (11%). - Satisfaction with the CTS program: 24% of the parents were very satisfied, 50% were satisfied, 0.5% were dissatisfied and 26% were very dissatisfied. 2.5.4. Findings - The number of the autistic children in Vietnam is increasing. - Autism in children was detected and diagnosed quite late; for most children it was detected and diagnosed after the age of 2. - Examiners, administrators and parents are aware of the importance and role of development evaluation for educational planning for children with autism. However, the development evaluation to develop personal educational plan for children with autism is not adequate and does not meets the needs of parents with autistic children. The manner of 117 Nguyen Thi Hoang Yen dealing with children with autism is primitive and inconsistent even among those localities that that have a program to implement. - After the child is diagnosed, parents are involved in some treatment program and intervention for the child. - More care centers, rehabilitation and education for autistic children are becoming available, but only in a few of Vietnam’s largest cities. This meets the need of a very small number of families with an autistic child and the assistance they get is mainly daycare activities. The education of these children has not been conducted in an even or efficient manner. 3. Conclusion Quality care, rehabilitation and education for autistic children require: + The existence of a comprehensive system that includes detection, early diagnosis, health care, intervention, information and education and support for children with developmental disorders. + Effective coordination between the various governmental departments regarding care and education for disabled children in general and autistic children in particular. + An increase in the quantity and quality o