Development assessment of children with autism spectrum disorders in Vietnam

JOURNAL OF SCIENCE OF HNUE Interdisciplinary Science, 2013, Vol. 58, No. 5, pp. 120-127 This paper is available online at DEVELOPMENT ASSESSMENT OF CHILDRENWITH AUTISM SPECTRUM DISORDERS IN VIETNAM Dao Thi Bich Thuy and Tran Thi Minh Thanh Faculty of Psychology and Education, Hanoi National University of Education Abstract. The work of developmental assessment in order to create an educational plan for children with autism is crucial in the system of Detection - Diagnosis - Assessment - Intervention - Inclusive Education. Using questionnaires, semi-structure and in-depth interviews, this study attempts to investigative the situation and the need for developmental assessment when making an educational plan for children with autism with input from parents, people who work assessment and managers in 3 big cities in Vietnam. Keywords: Developmental assessment, educational plan, children with autism. 1. Introduction Research on children with autism in Vietnam is a new area and little research has been done. The number of children with autism who have received intervention services or special education is few, even in the biggest cities of Hanoi and Ho Chi Minh City. Inclusive education for children with disabilities is difficult and this is particularly true for those with autism. Most Vietnamese people don’t know what autism is. In Hanoi there now exist schools and centers that are for children with autism but these schools and centers care for a very small number of children and the focus is on caring, not teaching. The educational needs of these children are not being met. September 2002, the Family of Children with Autism Club was established at the Training and Development Center for Special Education, Hanoi National University of Education. In the beginning there were 40 families in the club and that number increased to over 300 in 2009 (according to the website: tretuky.com). Recently, particularly in the biggest cities, many centers and schools for children with autism have been established in order to meet the need of early intervention and education for those children. Early intervention is an important for the future of children Received February 29, 2013. Accepted May 12, 2013. Contact Dao Thi Bich Thuy, e-mail address: thuyjapans@gmail.com 120 Development assessment of children with autism spectrum disorders in Vietnam with autism, and early intervention is essential if there’s to later be an inclusive education. In order to successfully implement early intervention and inclusive education, a system that carries out detection – diagnose – intervention – inclusive education must be in place [4]. Before 1980, care and education programs for children existed in Vietnam but no assessments were made regarding quality or development. Since 1990, development assessments of children have been done to some degree. Research that has been done on developmental assessment for children is as follows: - Applying the Denver Developmental Screening Test (DDST) to assess motor psychological development of children from 1-72 months (Ha Vi and colleagues, 1990). - Developing a test to assess the readiness of 6-year old children to enter grade 1 (Nguyen Thi Hong Nga, 1997). - Developing an assessment exercise for preschoolers 5-6 years of age (Department of Early Childhood Education, Ministry of Education and Training MOET, 1997). - Developing a test for developmental assessment of children at nursing age (TBT Test), Ta Ngoc Thanh, 2002. - Research on Development Standards for 5-year old children (MOET, starting in Sept 2005 and enacted in early 2009). The results of the above research initially provided some tools for developmental assessment at different ages and developmental stages. However, practical usage of those tools is quite limited. Moreover, there is no nationwide standard procedure. In 2010, the Ministry of Technology Science approved a national independent research project that was called “Research on methods of early intervention and inclusive education for children with autism in Vietnam presently and in the period 2011-2020.” This research could further the development of the system of Detection-Diagnosis-Assessment-Intervention-Inclusive Education. The goal is to increase both quantity and quality of services for children with autism, to diminish the difficulties of families of children with autism and to increase the effectiveness of an inclusive education. In this system, the need for developmental assessment to create an educational plan for children with autism is crucial. To explore this issue, we did a survey by providing questionnaires to 200 parents that have children with autism. The parents ranged from uneducated farmers to high educated people and included 50 who were managing directors, a vice-director of a consulting centers at a university, staff at early intervention centers, principals and vice-principals of special schools for children with disabilities including children with autism, and 100 people who do assessment work at hospitals, universities, colleges, early intervention centers and schools for children with autism and other special needs. The research made use of the questionnaires, semi-structure and in-depth interviews. The questionaire included 30 items in 3 core domains: Awareness (5 items), 121 Dao Thi Bich Thuy and Tran Thi Minh Thanh Incivility (10 items) and Practice (15 items) [9]. 2. Content 2.1. The rate of autism by gender and significance Diagram 1. The ratio of children with autism by gender Of the 200 randomly selected parents of children with autism, 61% were parents that had an autistic son and 39% had a daughter with autism. The level of significance of autism is reflected in Table 1. Table 1. Autism level Level Quantity Ratio Severe 20 10.0 Average 48 24.0 All levels 132 66.0 Total 200 100.0 According to personnel who work with assessment, 10% said that children who were assessed and intervened at the centers had a severe level of autism, 24% said that the children’s level of autism was average and 66% said that those children were mildly to severely autistic. 2.2. Time of developmental assessment for an intervention plan for children with autism Many parents and managers agree that children need to undergo developmental assessment when they arrive at an early intervention center, within the first few days or after a period of intervention. However, 24% of those who work with assessment said that they do a developmental assessment when the child arrives at the intervention center, 38% said they did an assessment once every 3 months so that they can adjust the intervention plan to suit the needs of the children, and 16% said that once every 6 months is adequate to check children’s progress and intervention program effectiveness. 22% said that they carried out a developmental assessment when the child enters an intervention program and again 3 or 6 months later if a parent requested re-assessment in order to evaluate the progress of 122 Development assessment of children with autism spectrum disorders in Vietnam child and to perhaps adjust the intervention program. Table 2. Time of developmental assessment for intervention plan Assessment time Parents Managers Assessment experts Rate Percent Rate Percent Rate Percent Answered Just arrival to early intervention center 74 37.0 18 36.0 24 24 After several days 49 24.5 10 20.0 0 0.0 After 3 months 0 0 0 0 0 0.0 After 6 months 0 0 0 0 0 0.0 Not know 7 3.5 0 0 0 0.0 Once per 3 months 45 22.5 10 20.0 38 38.0 Other 3 1.5 0 0 22 22.0 Once per 6 months 13 6.5 12 24.0 16 16.0 Total 191 95.5 50 100.0 100 100.0 Not answered 9 4.5 0 0.0 0 0.0 Total 200 100 50 100.0 100 100.0 2.3. Assessment mode Table 3. Assessment mode at early intervention centers Assessment mode Parents Managers Assessment experts Ratio Percent Ratio Percent Ratio Percent Answered Group 59 29.5 20 40.0 50 50.0 Individual 94 47.0 4 8.0 16 16.0 Both 39 19.5 26 52.0 34 34.0 Total 192 96.0 50 100.0 100 100.0 Not answered 8 4.0 0 0 0 0 Total 200 100 50 100.0 100 100.0 From Table 3, it can be seen that 47% of the parents said that they’d be satisfied if just one professional expert made the developmental assessment of their child prior to making the intervention plan, 29.5% said that a developmental assessment should be carried out by a group of professional experts, 19.5% said that either an individual expert or a group of expert group would be fine and 4% had no opinion on this matter. Developmental assessment is carried out either by a group of professional experts or an individual expert, but rarely both. In fact, 50% of the assessment experts said that they assessed as a member of a group, 16% said they assessed individually and 34% said that they did assessments both as a member of a group and as an individual. Most local managers (40%) said that developmental assessment for children with 123 Dao Thi Bich Thuy and Tran Thi Minh Thanh autism in order to plan an individual education program is carried out in a group, 52% said that they did assessments in both modes and only 8% said they assessed individually. Thus, there is a difference in what parents would like and what managers and assessment experts do. Parents said that the assessment was carried out individually while managers and assessment experts said that the assessment was carried out by a group or by both a group and an individual. It could be that sometimes a representative from a group of assessment experts interviews the parents and the parents think that that one expert was the sole person who assessed their child. Regarding who should be responsible for the assessment prior to planning an intervention program for children, everyone interviewed answered that the person who assesses their child should be a teacher, psychologist, special educator, doctor, assessment technician or some collaboration of the above. Most people (98%) wanted the assessment done by a doctor, special educator or teacher and only 2% wanted a technician to assess their child. 2.4. Developmental assessment instruments Table 4. Developmental assessment instrument Instrument Parents Managers Assessment experts Rate Percent Rate Percent Rate Percent Answered Kyoto 34 17.0 9 18.0 8 8.0 Denver II 25 12.5 13 26.0 16 16.0 Checklist 39 19.5 6 12.0 4 4.0 PEP-R/III 31 15.5 4 8.0 32 32.0 Others 42 21.0 18 36.0 40 40.0 Not know 29 14.5 0 0.0 0 0.0 Total 200 100 50 100.0 100 100.0 For the question about tools used in developmental assessment of children with autism, 29 out of 200 parents in Hanoi, Ho Chi Minh City and Danang did not know what tools the centers used to assess their children. 34 of the 200 (17%) said that they thought that their children were assessed using the Kyoto Scale, 25 (12.5%) said that they thought that the Denver II scale was used, 39 (15.5%) said that it was their understanding that a PEP (PEP-R or PEP-III) scale was used, and 42 of 200 parents (21%) said that they thought that tools such as CARS, WISC, Binet-Simon IV, ABS-S:2 were used. 8% of the assessment experts used the Kyoto Scale from Japan, 16% used the Denver II scale, 4% used checklists, 32% used PEP-R or PEP-III and 40% used other tools such as the Language Scale, Behavior Scale, or Intelligence Scale. According to the managers, centers that care for and educate children with autism use different assessment tools. 18% said that they used the Kyoto Scale, 26% used the Denver II, 12% used Checklists, 8% used the PEP-R or PEP-III and 36% used other tools. 124 Development assessment of children with autism spectrum disorders in Vietnam From this investigation, it was seen that most parents, managers and assessment experts at the centers believe that in order to plan individual education for children with autism, the selection and use of assessment is crucial. They also believe that different assessment tools and methods are needed to provide the essential information prior to planning. 2.5. Assessment procedure Table 5. Assessment procedure Assessment procedure Managers Assessment experts Rate Percent Rate Percent Answered TN-PV-ĐG-TV 39 78.0 100 100.0 PV-ĐG-TV 6 12.0 0 0.0 TN-PV-ĐG 2 4.0 0 0.0 TN-ĐG-PV-TV 1 2.0 0 0.0 TN-ĐG-TV 2 4.0 0 0.0 Total 50 100.0 100 100.0 Note: TN= Registration; PV= Interview; ĐG = Assessment; TV= Consultation Every assessment expert said that the procedure of developmental assessment should be along the following steps: Registration – Interview – Assessment – Consultation. While 78% of the managers agreed, 12% said that the procedure should be: Interview – Assessment – Consultation, 4% said Registration – Interview – Assessment, 4% said Registration – Assessment – Consultation and 2% said Registration – Assessment – Interview – Consultation. In sum, the procedure for developmental assessment prior to designing an individual education plan at centers currently follow the steps of Registration – Assessment – Interview – Consultation. This procedure is thought to be best. 2.6. Expectations for developmental assessment prior to making an individual education plan for children with autism In order to have a foundation for analyzing and suggesting ways to develop and refine the system of early intervention for children with autism, we asked the interviewees what their expectations were. The parents of children with autism have many expectations regarding what will be done for their children. Their expectations are focused on having an informatics system, getting an autism consultation, receiving support from experts, having teachers who are trained to work with autistic children, ability to access diagnostic and assessment services, and early intervention of high quality. According to people who work for assessment, 40% expect to see increased collaboration between medical and education services when assessing children, an 125 Dao Thi Bich Thuy and Tran Thi Minh Thanh increasing number of qualified assessment experts, and improved assessment tools for children with autism plus an improved system of developmental assessment for children with autism. 16% expect that there is collaboration between health care and education professionals. Regarding the developing of a scientific system of developmental assessment, 8% said it is essential to train assessment experts and 6% expected additional research in the assessment of children with autism. Half of the managers (50%) want to increase the number of professional experts, to make parents more aware of autism, to expand offices and organizations to support parents and families of children with autism, to refine the system of assessment to improve assessment tools and to increase assessment expert training. Nearly 12% of the managers said that they wished that different offices and organizations would support parents and families, 10% expected development of the assessment system, 6% expected that more professional experts will be needed and 6% expect that the assessment tools for children with autism will improve. In sum, both assessment experts and managers expect that there will be improvements in professionals who assess autism and of assessment tools. Because there are too few professional experts, education for children with autism suffers. I In order to increase the quality of education and care for children with autism, it will be necessary to increase the number of qualified personnel. 3. Conclusion The objective of this investigation was to look at the situation and the need of developmental assessment prior to making an educational plan for children with autism in Hanoi, Ho Chi Minh City and Danang. Parents of autistic children, people who work with assessment and managers understand the quality of developmental assessment is not high. Moreover, developmental assessment for making an educational plan is not carried out regularly and not given much attention. Developmental assessment for individual education plans for children with autism is problematic and has not met the needs of parents or families with autistic children. The modes and methods of developmental assessment and the assessment tools are simple and vary between areas and centers. This likely affects the quality of education for children with autism in Vietnam. People who work with assessment, managers and parents are quite aware of the importance and the role of developmental assessment prior to planning an educational program for children with autism. 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