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Parent perceptions of early intervention and other related services for young children with Autism Spectrum Disorder in Thailand

Dissertation
Author: Kingsorn Kohprasert
Abstract:
Autism Spectrum Disorder (ASD) is defined as a life-long disability. Due to the nature of this disability, students with ASD exhibit significant challenges that require intensive supports from both school and home. Parents play an important role in early intervention for their children with disabilities including children with ASD. In Thailand, although early intervention services have been provided for children with disabilities since 1988, it was not mandated by the law. Children with ASD have just been widely known in Thai society in recent years. The services available for such children are still limited. In this study, a quantitative research design using a survey method was utilized in order to investigate early intervention and other related services received by young children with ASD and their parents in Thailand. Data were collected from 442 parents of young children with ASD across the country. Results revealed that although parents totally agreed that early intervention and related services were appropriately provided for their children with ASD, they also expressed high levels of need in all types of services including need of information, need of support, need of community services, and need of financial support. Statistically significant differences were found among parent and child characteristics. Findings of this study provide important implications for professionals who work with young children with ASD and their families. Recommendations and future research were also provided.

vi TABLE OF CONTENTS

LIST OF TABLES viii

CHAPTER 1: INTRODUCTION 1

Purpose of the Study 7 Statement of the Problem 7 Significance of the Study 8 Research Questions 9 Definitions 10 CHAPTER 2: REVIEW OF RELATED LITURATURE 12 Autism Spectrum Disorder and Its Prevalence 12 Early Intervention Services Overview 16 Early Intervention and Education Services for Children with Children 23 With Disabilities including Children with Autism in Thailand Early Intervention for Children with Autism Spectrum Disorders 30 Current Approaches in Early Intervention for Children with 32 Autism Spectrum Disorders Best Practices in Early Intervention Services for Children with 42 Autism Spectrum Disorders Parents’ Perceptions 49 Summary of Literature 64 CHAPTER 3: METHODOLOGY 65 Participants 66 Design 68 Instrumentation 70

vii Data Collection Procedures 74 Data Analytic Procedures 75 CHAPTER 4: RESULTS 80 Reliability Analyses 80 Demographic Information 82 Research Question 1 86 Research Question 2 87 Research Question 3 88 Research Question 4 109 Research Question 5 123 CHAPTER 5: DISCUSSION 127 Summary of Findings 128 Discussion 130 Limitations 147 Future Research 148 REFERENCES 152 APPENDIX A: COVER LETTER AND INFORMED CONSENT 168 APPENDIX B: SURVEY 169

viii LIST OF TABLES

TABLE 1: Accessible Population from Types of Organizations Providing 68 Early Intervention Services for Children with ASD in Thailand Divided by Locations

TABLE 2: Cronbach’s Alphas of Parent Perception Questionnaire (PPQ) 81 and Parent Need Questionnaire (PNQ)

TABLE 3: Demographics of Parents 83

TABLE 4: Demographics of Children 85

TABLE 5: Mean and Standard Deviation of Parent’s Perceptions of Early 87 Intervention Services for Their Young Children with ASD

TABLE 6: Mean and Standard Deviation of Parent’s Needs of Early Intervention 88 Services for Their Young Children with ASD

TABLE 7: Mean, Standard Deviation, F-Test, and Effect Size of Parent Perceptions 90 and Needs of Early Intervention Services across Parent

TABLE 8: Means, Standard Deviations, F-Tests, Effect Sizes of Subscales of Parent 94 Perceptions and Needs of Early Intervention Services for Young Children with ASD across Parent’s Genders

TABLE 9: Means, Standard Deviations, F-Tests, Effect Sizes of Subscales of Parent 96 Perceptions and Needs of Early Intervention Services for Young Children with ASD across Parent’s Age

TABLE 10: Means, Standard Deviations, F-Tests, Effect Sizes of Subscales of 100 Parent Perceptions and Needs of Early Intervention Services for Young Children with ASD across Parent’s Relationships to a Child

TABLE 11: Means, Standard Deviations, F-Tests, Effect Sizes of Subscales of 102 Parent Perceptions and Needs of Early Intervention Services for Young Children with ASD across Parent’s Educational Level

TABLE 12: Means, Standard Deviations, F-Tests, Effect Sizes of Subscales of 106 Parent Perceptions and Needs of Early Intervention Services for Young Children with ASD across Parent’s Monthly Income

TABLE 13: Mean, Standard Deviation, F-Test, and Effect Size of Parent 110 Perceptions and Needs of Early Intervention Services across Children Characteristics

ix

TABLE 14: Means, Standard Deviations, F-Tests, Effect Sizes of Subscales of 113 Parent Perceptions and Needs of Early Intervention Services for Young Children with ASD across Child’s Diagnosis

TABLE 15: Means, Standard Deviations, F-Tests, Effect Sizes of Subscales of 115 Parent Perceptions and Needs of Early Intervention Services for Young Children with ASD across Child’s Service Region

TABLE 16: Means, Standard Deviations, F-Tests, Effect Sizes of Subscales of 118 Parent Perceptions and Needs of Early Intervention Services for Young Children with ASD across Child’s Type of School

TABLE 17: Means, Standard Deviations, F-Tests, Effect Sizes of Subscales of 122 Parent Perceptions and Needs of Early Intervention Services for Young Children with ASD across Child’s Type of Class Attending

CHAPTER 1: INTRODUCTION

Autism was first identified by Leo Kanner, a psychiatrist at Johns Hopkins Medical Center who observed a group of children in his clinic and reported the term “autism” in the literature in 1943. Kanner used the word autism to propose that these children live in their own world. He originally described children with autism as having early onset by 22 years of age, lacking motivation for social interaction, having difficulty in communicating with others, and presenting abnormal behaviors (Volkmar & Klin, 2005). Since Kanner published his first study on autism, many studies about autism have been conducted, revised, and refined over the years. Interestingly, in 1944, Hans Asperger, an Austrian pediatrician, published his article in which he presented case studies of four school-age children whom he described as having an autistic psychopathy (a personality disorder). These children had social impairments, but were able to develop some relationships. In 1981, the first report of Asperger’s study was published in English by Lorna Wing who studied a group of 35 cases, age between 5 to 35, and described a clinical presentation of the participants similar to Asperger’s study. The term “Psychopathy” might not be appropriate for use in developmental terms, thus, Wing renamed the disorder as Asperger’s Syndrome (Klin, Mcpartland, & Volmar, 2005). Wing also suggested that Asperger’s Syndrome (AS) can be found in boys more than girls. She brought AS into the autism spectrum based on three defined impairments: social interaction, communication, and imaginative activities (Wing, 2000). Previously,

2 children who presented a severe and pervasive development of delay such as social skills, communication, and stereotyped behavior were described as having a pervasive developmental disorder (PDD) in the DSM-III (1980) and DSM-III-R (1987). Then, the term was revised in the DSM-IV in1994 and defined as a spectrum disorder. The most widely used term “autism” was recently described by the American Psychiatric Association in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR, 2000). In addition, the words “autism” “autism spectrum disorder” and “pervasive developmental disorder” are still used interchangeably in the literature nowadays (Volmar & Klin, 2005). There are a growing number of children identified as having Autism Spectrum Disorder (ASD). Recent epidemiological studies showed that the prevalence of ASD has increased from 4-5 cases per 10,000 individuals in the1960s to 5-31 cases per 10,000 in the 1990s (Lotter, 1966; Nordin & Gillberg, 1996). Baker (2002) compared the prevalence and characteristics of referrals and of the diagnoses of children with suspected ASD. These findings indicated that there was a 164.7% increase in referrals and a 200% increase in positive diagnosis of ASD. Recently, the findings from a study of the Center for Disease Control and Prevention (CDC) indicated that the prevalence of ASD affects approximately an average of 1 child in every 150 or 6.6 cases per 1000. These data were obtained from the Autism and Developmental Disabilities Monitoring (ADDM) Network from 14 states which represents 10 % of the U.S. population of 8-year old children (CDC, 2007). Autism Spectrum Disorder (ASD) is defined as a life-long disability that is present from birth or very early in development and affects three main areas including

3 social interaction, communication, and restrictive, repetitive behaviors. Within the autism spectrum, there are five major disorders that include: (a) autistic disorder, (b) Asperger’s disorder, (c) Rett’s disorder, (d) childhood disintegrative disorder (CDD), and (e) pervasive developmental disorder not otherwise specified (PDD-NOS) (American Psychiatric Association, 1994). Some of the subgroup labels are used to explain a child’s unique characteristics. For instance, children with Asperger’s disorder are defined as those who have impairments in social interaction and behaviors, but their communication is close to normal levels of functioning. Moreover, their intelligence is in the average or above average range of ability (Adams, Edelson, Grandin, & Rimland, 2004) Because of this disorder, children with ASD exhibit significant challenges that affect their own lives and their family (Tsai, 2000). They display a wide range of functional levels: from very severe disabilities where the individual cannot communicate to very mild forms of disabilities where the individual is able to communicate and function relatively well in their community. Features of ASD include, but are not limited to an inability to establish friendships, lack of eye contact, inability to initiate or maintain conversations, intolerance to changes, and inflexible adherences to specific, non- functional routines. According to American Psychiatric Association (1994), more than 75% of children diagnosed as ASD have an intellectual disability. Children with ASD/PDD have multiple, unique needs that require different services. Due to the complexity of the disability, multiple service providers may need to be involved (Kohler, 1999). For example, in order to improve the quality of communication of children with autism, speech and language pathologists may take a major role in the development of communication of those children whereas occupational

4 therapists focus on the area of sensory integration. Moreover, the Individuals with Disabilities Education Act (IDEA, 2004) also requires a number of interagency policies and the development of a comprehensive system to support service delivery (Harbin et al., 2004). Due to the nature of this disability, students with ASD require intensive supports from both school and home (Turnbull, Wilcox, & Stowe, 2002). The law requires schools to develop the Individualized Education Plan (IEP) for students with disabilities including students with autism. School districts need to ensure parental participation in the IEP meeting and parents have the right to share their opinions or inputs into their child’s education. In addition, Simpson (1995) suggested that establishing relationships between professionals and parents of children with autism is crucial, particularly when barriers exist. Such relationships may have an impact on the educational program for students with autism; therefore, schools as service providers need to develop a strong collaboration with parents. In the United States, legislative initiative requires public schools to provide education to all children with disabilities. The law also provided incentives for states to provide early intervention services for children under the age of three in the 1980s. Early intervention is designed to help children who are under 3 years of age to meet their developmental milestones and support families. IDEA (2004) has guidelines for the provision of comprehensive, coordinated, multidisciplinary early intervention services to young children with disabilities and their families. The main purpose is to maintain and increase the functional ability of children who are at risk or have developmental delays to better perform in their own environments. In order to be eligible for these services,

5 children must be delayed in one or more developmental domain that includes cognitive, physical, communication, social, emotional, and/or adaptive. From this provision, states must ensure a smooth transition for young children who receive early intervention services to preschool, school, or other appropriate services. Parent participation is also required for their child’s transition (IDEA, 2004). Parents play an important role in early intervention services for their children with disabilities including children with ASD. In order for their children to obtain services, parents need to make a connection to the intervention system and participate in the process of services. For example, if a child was enrolled in an early intervention program for infant and toddler and needed to be transferred to a preschool program, a transition process is required to start when a child reaches the age of two years and six months. Parents need to collaborate with a child service coordinator in order to discuss and prepare for the transition (North Carolina Department of Health and Human Services, 2003). According to the data from the U.S Department of Education (2000) in 1998, almost 200,000 children were enrolled in early intervention programs because of their disabilities or they were at risk for a developmental delay. The 1997 reauthorization of IDEA has offered rights to parents to participate in the decision making process regarding special education (Turnbull et al., 2002). The law recognizes the need to promote the capacity of parents to meet the needs of their children and addresses this through the development of an Individualized Family Service Plan (IFSP) and the Individualized Education Plan (IEP). Parent’s involvement in children’s development has been recognized by research, and is currently well recognized in legislation as well.

6 While parent involvement in their child’s education has been recognized as essential and part of a legal guarantee, their involvement has not always been optimal (Stoner et al., 2005). Although parental participation is needed in planning for education of children with disabilities, many parents still have little or no involvement in their child’s education (Spann, Kohler, & Soenksen, 2003). For instance, Lynch and Stein (1982) studied four hundred parents regarding their involvement in IEP meetings. Although the findings indicated that 71% of the participants reported active involvement in the meeting, only 14% provided specific comments. The need exists to understand perspectives of parents of children with autism in order to improve communication, effective intervention practices, and service delivery. Despite being recognized for several decades, Autism, one form of ASD, has been known only among a small number of professionals who worked in this particular area with children with disabilities in Thailand. Additionally, children with ASD have just gained awareness in Thai society in very recent years (Metchanun, 2007; Poolsuppasit, 2005). Many parents seem to know very little about ASD. In Thailand, although early intervention and related services have been provided for children with disabilities from birth to six years of age since 1988 (Mental Health Department, 2002), it has not been mandated by the law. It is not surprising that service availability for children with ASD may not be appropriate and sufficient to meet their special and unique needs. Therefore, it is significant to investigate the perceptions of parents whose child has ASD on early intervention and other related services including their needs for available services. Although there are a number of research studies on parents’ perceptions in the U.S. (Starr, Foy, & Cramer, 2001; Spann et al., 2003), no research has been found that

7 examines perceptions of parents whose children have been identified as ASD in Thailand. There is a need to conduct research on parent perceptions regarding early intervention and related services for young children with ASD in Thailand. Several factors have contributed to this need. These include the apparent increase in the number of children with ASD (Bryson, 1997), the fact that early intervention has proved to be effective for children with ASD (Bailey & Rutter, 1992), and the need to move toward parent participation in the development of appropriate services for children with disabilities (Salisbury, 1992). Purpose of the Study The purposes of this descriptive research study were three fold. The first purpose was to investigate the perceptions and needs of parents whose child has been diagnosed with ASD of early intervention and other related services available for their children with ASD in Thailand. The study focused on services from both public and private organizations. The second purpose was to examine how parents’ perceptions and needs of early intervention services for their young children with ASD differ across parents’ and children’s characteristics. Last, parents’ recommendations for improving early intervention and other related services for children with ASD in Thailand were reported. Statement of the Problem A substantial body of literature documents the increase in number of children diagnosed with ASD (Baker, 2002; Lotter, 1966; Nordin & Gillberg, 1996). This has been observed in Thailand as well. The Department of Psychiatry, Siriraj Hospital, Thailand reports that there were 545 patients receiving the diagnosis of PDD in 2004. The number increased to 632 in 2005 (Department of Psychiatry, 2004-2005).

8 Poolsuppasit et al. (2004) conducted a cross sectional study to survey the prevalence of autism in Thailand in order to evaluate the situation and subsequently plan for effective treatment. It was found that the prevalence rate of young children between one to five years of age was 9.9 children per 10,000. Although the numbers of children with ASD have increased in Thailand, the services available for such children are still limited. Little or no information is available to describe whether or not services for young children with ASD are appropriate, sufficient, and meet the needs of parents and their children with ASD. Significance of the study Due to an increased number of children with ASD, parents have been searching for appropriate services for their children. Since ASD has recently been recognized as a disability in Thailand, many parents may not truly know and understand about ASD. Services available for these children may not be sufficient or appropriate to meet the special and unique needs of these children. The absence of research investigations on services for children with disabilities, especially children with ASD causes a significant lack of knowledge in this area for those who are interested in early intervention and other services for young children with ASD in Thai community. Undoubtedly, interested parties are obligated to study Western literature as a primary source of information in order to understand the Thai phenomenon. Therefore, there is a need to understand the services available for young children with ASD in Thailand. Because parents are the key caretakers of children with ASD, it is critical to investigate parent perceptions on early intervention and other related services provided for young children with ASD. This study is crucial for two important reasons: (a) there are only a few studies that have

9 investigated parents’ perceptions regarding services for young children with ASD (Starr, Foy, & Cramer, 2001; Spann et al., 2003), and (b) it is the first study in Thailand to survey parents’ perception on early intervention and related services across the country. The findings of the study will enable service providers as well as policy makers to provide better services for young children with ASD in Thailand in the future. Research Questions The following research questions were used to guide this investigation 1. What do parents perceive about early intervention and other related services for their children with ASD? 2. What are parent’s needs on early intervention and other related services for their young children with ASD? 3. How do parents’ perceptions and needs of early intervention and related services for children with ASD differ across parents’ characteristics? and to what extent? 4. How do parents’ perceptions and needs of early intervention and related services for children with ASD differ across children’s characteristics? and to what extent? 5. What do parents recommend for improving early intervention and other related services so that their young children with ASD can be served more effectively? Assumptions In this study the researcher assumed that

10 1. The information obtained from parents participating in this study is true and accurate. 2. The translation of the questionnaire is accurate and culturally sensitive. Delimitations This study is limited to the investigation of parent perceptions, and needs on early intervention and other related services available for children with ASD in Thailand. Parents in this study were limited to those whose children have been diagnosed as having ASD, their child must be at the age between two to six years of age, and their child must receive one or more type of services from early intervention and other related services in Thailand. Definitions Parent: father, mother, grandfather, grandmother, or someone who is responsible for a child with ASD in a family Parents’ perceptions: the awareness of parents toward early intervention and other services available for children with ASD and services that are not available but in need for their young children with ASD in Thailand. Young children with ASD: children with ASD, 2-6 years of age, who have been diagnosed by a physician or the expert in the area of ASD. Early intervention services: developmental services that are designed to meet the developmental needs of young children with disabilities including children with ASD and provided by both public and private organizations. These services also include a process of assessment and intervention provided to children, especially those younger than age 6,

11 to facilitate normal cognitive and emotional development and to prevent developmental disabilities or delays. Other related services: services that are provided additionally for particular children who need them. These services include: 1. Speech-Language therapy 2. Occupational therapy 3. Physical therapy 4. Psychological services 5. Developmental/Educational therapy 6. Nursing 7. Home visits 8. Behavioral supports 9. Medical services 10. Music therapy 11. Social work services 12. Assistive technology devices and services 13. Parent training 14. Transportation Inclusive classroom: the regular classroom in which children with disabilities including children with ASD are educated with their typical developing peers; the general education teacher is the main teacher responsible for all children’s education.

CHAPTER 2: REVIEW OF RELATED LITERATURE

The intent of the literature review is to discuss the theoretical foundations and empirical research in early intervention and early childhood special education services for children with disabilities, children with Autism Spectrum Disorders (ASD) in particular. The purpose of this review is fivefold. First, a brief overview of the term of ASD and its prevalence were presented to provide background information regarding young children with ASD. Second, an overview of early intervention and the law related to services for young children with disabilities was provided. Third, in order to better understand the phenomenon of services for children with disabilities and ASD in Thailand, information about early intervention and education services for young children including those with autism spectrum disorders in Thailand were gathered. Fourth, current approaches and best practices for providing early intervention services for children with autism spectrum disorders were reviewed. Finally, the literature related to perceptions of parents of children with disabilities and parents of young children with ASD in particular was discussed. Autism Spectrum Disorder and Its Prevalence Autism spectrum disorder (ASD), a group of neurodevelopmental conditions characterized by a triad of impairments in social interaction, communication, and repetitive behaviors, is an increasingly popular term used to refer to a broad definition of autism including the classical form of the disorder and related disabilities that share

13 several characteristics. Autism Spectrum Disorder consists of the following diagnoses and classifications: (a) Autism disorder, which refers to children who have a visible impairment in social interaction, communication, speech and language skills, as well as restricted repetitive and stereotyped behaviors; (b) Asperger syndrome, which refers to children who demonstrate lack of appropriate social skills in response to social situations and may have repetitive stereotyped patterns of behavior, but do not have atypical language skills; (c) Rett’s syndrome, which refers to children who appear to be normal during the first five months of life, then the child’s development decelerates in social interaction skills, problems in development of trunk movements, severe psychomotor retardation, and severe impairments of communication skills; (d) Childhood disintegrative disorder (CDD), which refers to children whose development seems normal for the first few years of life, but then they lose the abilities and skills that used to be well developed; and (e) Pervasive developmental disorder not otherwise specified (PDD-NOS), which refers to a condition that is similar to autism but may not be as severe or extensive (APA, 2000). Prevalence of Children with ASD in the U.S. Although autism was thought to be a rare disorder 10 years ago, the number of children identified as having autism spectrum disorders appears to have increased considerably all over the world. In the U.S., in the 1990’s, the Centers for Disease Control and Prevention estimated that a widely used definition of autism may be present in as many as 1 person in 500 (Van Naarden, 2004) whereas the National Institute of Mental Health (NIMH) suggested that although the exact prevalence of children with autism is unknown, there is approximately 1 person in 500 or 1 person in 1000 (NIMH,

14 2003). It is estimated that approximately 500,000 individuals in the U.S. may receive the diagnosis of autism or autism spectrum disorder. In later studies, the number of children with ASD has increased dramatically (Gilberg, 1999; Moore-Brown & Montgomery, 2001). According to Prelock (2001), prevalence rates in the U.S. show that .8 to 2 children in 1,000 have the autism condition while Bertrand et al. (2001) indicated that the prevalence rates of children with autism have been estimated to be as high as 6.7 in 1000 for children with some types of ASD whereas 4 in 1000 for those who meet the full criteria of Autistic disorder (as defined by the DSM-IV: American Psychiatric Association, 1994). This information suggests that as many as 1.5 million persons in the U.S. alone are affected by autism. It is recognized that the incidence of autism is rapidly increasing at the alarming rate of 10-17 % each year (Dahle, 2003). More recently, the Autism Society of America (ASA) conducted a population-based, multi-state surveillance network that surveyed 8-year-olds in 2000 and 2002. The findings indicated that prevalence of children with ASD affects approximately an average of 1 child in every 150. These data represent 10 % of the U.S. population of 8-years old children (ASA, 2007). Prevalence of Children with ASD in Other Countries In other countries, for example, the British National Survey of Child Mental Health reported that the prevalence rate of children with all types of autism spectrum disorders is 27.9 per 10,000 (Fombonne, Simmons, Ford, Meltzer, & Goodman, 2001). Again, in England, Chakrabari and Fombonne (2005) investigated a prevalence of children who had been diagnosed as having pervasive developmental disorders between the ages of four to six years old. The prevalence of 58.7 per 10,000 was found. In Canada

Full document contains 185 pages
Abstract: Autism Spectrum Disorder (ASD) is defined as a life-long disability. Due to the nature of this disability, students with ASD exhibit significant challenges that require intensive supports from both school and home. Parents play an important role in early intervention for their children with disabilities including children with ASD. In Thailand, although early intervention services have been provided for children with disabilities since 1988, it was not mandated by the law. Children with ASD have just been widely known in Thai society in recent years. The services available for such children are still limited. In this study, a quantitative research design using a survey method was utilized in order to investigate early intervention and other related services received by young children with ASD and their parents in Thailand. Data were collected from 442 parents of young children with ASD across the country. Results revealed that although parents totally agreed that early intervention and related services were appropriately provided for their children with ASD, they also expressed high levels of need in all types of services including need of information, need of support, need of community services, and need of financial support. Statistically significant differences were found among parent and child characteristics. Findings of this study provide important implications for professionals who work with young children with ASD and their families. Recommendations and future research were also provided.