Educational Interventions for Children with Autism Spectrum Disorders: Perceptions of Parents and Teachers in a Northeast Tennessee School System.

Transcription

1 East Tennessee State University Digital East Tennessee State University Electronic Theses and Dissertations Educational Interventions for Children with Autism Spectrum Disorders: Perceptions of Parents and Teachers in a Northeast Tennessee School System. Paula Anderson Nickels East Tennessee State University Follow this and additional works at: Recommended Citation Nickels, Paula Anderson, "Educational Interventions for Children with Autism Spectrum Disorders: Perceptions of Parents and Teachers in a Northeast Tennessee School System." (2010). Electronic Theses and Dissertations. Paper This Dissertation - Open Access is brought to you for free and open access by Digital East Tennessee State University. It has been accepted for inclusion in Electronic Theses and Dissertations by an authorized administrator of Digital East Tennessee State University. For more information, please contact dcadmin@etsu.edu.

2 Educational Interventions for Children with Autism Spectrum Disorders: Perceptions of Parents and Teachers in a Northeast Tennessee School System A dissertation presented to the faculty of the Department of Educational Leadership and Policy Analysis East Tennessee State University In partial fulfillment of the requirements for the degree Doctor of Education by Paula Anderson Nickels December 2010 Dr. Eric Glover, Chair Dr. Cecil Blankenship Dr. Virginia Foley Dr. Pamela Scott Keywords: Autism Spectrum Disorder, Pervasive Developmental Disorder, Teaching Methods, Intervention, Parent Perceptions, Teacher Perceptions

3 ABSTRACT Educational Interventions for Children with Autism Spectrum Disorders: Perceptions of Parents and Teachers in a Northeast Tennessee School System by Paula Anderson Nickels This qualitative case study investigated the perceptions of parents of children with autism spectrum disorders (ASD), special education teachers, and general education teachers in a Northeast Tennessee public school system regarding educational interventions for children with ASD including what interventions they have found effective, the barriers and challenges they have faced, and how they view their relationships with one another. Data were collected through interviews with a purposeful sample of 7 parents of 6 children with autism spectrum disorders, 8 special education teachers, and 6 general education teachers and a review of documents. Parent and teacher participants represented children at all levels on the autism spectrum, a variety of grade levels (PreK-12), and a wide range of educational placements. Data were analyzed using the constant comparison analysis method. Nine themes emerged describing parent and teacher perceptions of educational interventions they found effective for children with ASD. These themes were intensive early intervention using multiple methods; a structured learning environment; adult-mediated and peer-mediated interventions for social and communication skills; inclusion with a balance of direct services; support staff to facilitate inclusion; a functional approach to problem behaviors; alternative and augmentative communication interventions; and sensory-motor interventions. Barriers faced by 2

4 parents and teachers included lack of training and knowledge; lack of time; challenges caused by characteristics of ASD; problematic teacher attitudes; problematic parent attitudes; transition issues; and need for additional services. Parents and teachers described factors that facilitate positive parent-teacher relationships including collaboration, teamwork, and support; on-going communication; IEP Team processes; and positive teacher relationships with autistic children. The current study helps to fill a gap in the existing research literature by adding to knowledge about parent and teacher perceptions of educational interventions for children with ASD. Recommendations are made based on study findings to provide parents and teachers with insights from other points of view that can facilitate mutual collaboration in meeting the educational needs of children with ASD. 3

5 DEDICATION This study is dedicated with deep love and affection to my family. The race could not have been run nor the finish line crossed without your faithful love and support. First and foremost, to my precious husband Mark. Thank you for believing in me, supporting me, and cheering me on throughout this journey. You are my best friend and soulmate, the love of my life. Thank you for sharing my hopes and dreams and undergirding me with endless patience and encouragement. I cannot tell you how much I appreciate everything you have done for me and all that you have sacrificed to help me achieve my goal. I thank God every day for the gift of your unconditional love that sustains me, nourishes me, and gives me more joy than you will ever know. To my beloved father and the memory of my mother. Dad, I am so very thankful that you are there to see me reach this goal. You and Mother instilled in me a love of learning and a passion for excellence that is part of the fabric and fiber of my being and a major reason I undertook this endeavor. During phone conversations and our times together you have always asked about my studies and expressed your interest and belief in me. Your encouragement has meant the world to me. Thank you, Dad, for blessing me with the most valuable gift a daughter could ever receive, that of knowing my father loves me and is proud of me. To my son John Mark. I cannot thank you enough for all that you have done to make my dream come true. When it was my turn to pursue a lifelong ambition, you were there for me with your generous love and support. As I cross the finish line and reach for the prize, I look to the sidelines knowing you are there as one of my biggest fans. Without you my dearest son none of this would have been possible. Thank you from the depths of my heart. To my sisters and all the rest of my family. Thank you for all your kind words of encouragement and for spurring me on by being such outstanding role models yourselves in numerous, multi-facetted ways. I thank God for each and every one of you and the countless ways He has blessed my life through such an amazing family. 4

6 ACKNOWLEDGMENTS I wish to express my appreciation to all the faculty in the Department of Educational Leadership and Policy Analysis at East Tennessee State University. They have inspired me with their wealth of knowledge, their dedication to excellence, and the outstanding quality of their educational leadership. I am especially grateful to Dr. Eric Glover, my advisor and dissertation chair, whose mentorship, personal interest, and kind words of encouragement have been invaluable to me. I am deeply grateful for the feedback, guidance, and warm support he has given me throughout my studies and the dissertation process. He has given me confidence to persevere and helped to make my journey a delight. I also wish to express my gratitude to the other members of my committee. Dr. Virginia Foley and Dr. Pamela Scott have shared their wisdom as treasured teachers, providing new understandings and practical applications for my own role as an educational leader. I especially appreciate the positive encouragement, support, and gift of time they have provided throughout the dissertation process. I also wish to thank the cognate member of my committee, Dr. Cecil Blankenship, for his time and support. We share a common background and passion for special education, and I have especially relished his helpful insights from this field. I want to thank Dr. Karen Reed-Wright, my external auditor, for generously providing her time and assistance in helping me to reach this milestone. She has been a terrific resource and a welcome source of feedback and encouragement throughout this process. I am also grateful to the colleagues in my cohort. Without the friendship and support of these outstanding educators, I could not have made it to the journey s end. Finally, I wish to express my deepest appreciation to the parents, special education teachers, and general education teachers who so generously allowed me to interview them for this study and hear their remarkable stories and experiences. 5

7 CONTENTS Page ABSTRACT... 2 DEDICATION... 4 ACKNOWLEDGMENTS... 5 LIST OF TABLES Chapter 1. INTRODUCTION Purpose of the Study Research Questions Significance of the Study Scope of the Study Researcher s Bias Definition of Terms Overview of the Study REVIEW OF RELATED LITERATURE Introduction General Characteristics Definition and Diagnostic Criteria DSM-IV-TR Diagnostic Criteria IDEA Definition State of Tennessee Definition Etiology Prevalence Special Education Programming and Eligibility

8 Chapter Page Applied Behavior Analysis Early Intensive ABA with Discrete Trial Training: The Lovaas Method Discrete Trial Training: Further Research Naturalistic Teaching Procedures Incidental Teaching Pivotal Response Training Milieu Teaching Structured Teaching: The TEACCH Program Interventions to Teach Social Skills Adult-Mediated Interventions Priming with adult modeling Social stories Peer-Mediated Interventions Peers as partners (in vivo modeling) Peers as trainers Peers as tutors Video Modeling Adults as models Peers as models Self as model Augmentative and Alternative Communication Interventions Manual Signs and Gestures Picture Exchange Communication System (PECS) Occupational Therapy and Sensory Integration Therapy Essential Components of Effective Educational Programs Systematic Instruction

9 Chapter Page Individualized Supports and Services Comprehensible and Structured Learning Environment Specialized Curriculum Focus Functional Approach to Problem Behaviors Family Involvement Perceptions of Parents Perceptions of Teachers Perceptions of Multiple Stakeholders Summary RESEARCH METHODOLOGY Design of the Study Research Questions Selection of Participants Recruiting Protocol Parent Purposeful Sample Special Education Teacher Purposeful Sample General Education Teacher Purposeful Sample Data Collection Interviews Interview Guide Ethical Protocol for Interviews Document Review Purposeful Sample for Documents Document Review Guide Ethical Protocol for Documents

10 Chapter Page Data Analysis Interviews Document Review Trustworthiness Summary ANALYSIS OF DATA Study Participants Parents Special Education Teachers General Education Teachers Documents Collected Themes Perceptions of Effective Educational Interventions and Teaching Methods Intensive Early Intervention Using Multiple Methods Structured teaching (TEACCH) Naturalistic teaching Applied behavior analysis with discrete trial training A Structured Learning Environment Schedules, routines, and visuals Highly engaging, hands-on, active learning tasks Adult-Mediated Interventions for Social and Communication Skills Adult modeling, priming, and role play Social stories Peer-Mediated Interventions for Social and Communication Skills Peers as partners (in vivo modeling) Peers as trainers

11 Chapter Page Peers as tutors Inclusion with a Balance of Direct Services Adequate Support Staff to Facilitate Inclusion The critical role that paraprofessionals play The teacher s relationship with the paraprofessional Situations when adequate support is lacking A Functional Approach to Problem Behaviors Antecedent interventions Interventions using positive reinforcement and other supports Alternative and Augmentative Communication Interventions Manual signs and gestures Picture Exchange Communication System (PECS) Sensory-Motor Interventions Perceptions of Barriers and Challenges Experienced Lack of Training and Knowledge More training is essential for everyone Need for on-going, job-embedded training Sources of training for study participants Lack of Time Challenges Caused by Characteristics of ASD Itself Diversity of the spectrum Noises, sensory issues, attention problems, and meltdowns Limited communication skills and writing problems Problematic Teacher Attitudes Problematic Parent Attitudes Unrealistic expectations and overprotection

12 Chapter Page Intolerance and lack of understanding by other parents Transition Issues Need for Additional Services and Therapies Perceptions of Relationships among Parents and Teachers Parent-Teacher Relationships Collaboration, teamwork, and support On-going communication IEP Team meetings and the IEP itself Positive teacher relationships with autistic children Special Education-General Education Teacher Relationships Collegiality and closeness Divergent needs Summary SUMMARY, CONCLUSIONS, AND RECOMMENDATIONS Introduction Summary of Findings Research Question # Research Question # Intensive early intervention using multiple methods A structured learning environment Adult-mediated interventions for social and communication skills Peer-mediated interventions for social and communication skills Inclusion with a balance of direct services Adequate support staff to facilitate inclusion A functional approach to problem behaviors Alternative and augmentative communication interventions

13 Chapter Page Sensory-motor interventions Research Question # Lack of training and knowledge Lack of time Challenges caused by characteristics of ASD itself Problematic teacher attitudes Problematic parent attitudes Transition issues Need for additional services and therapies Research Question # Collaboration, teamwork, and support On-going communication IEP Team meetings and the IEP itself Positive teacher relationships with autistic children Collegiality and closeness Divergent needs Recommendations for Practice Recommendations for Research Conclusion REFERENCES APPENDICES Appendix A: Interview Guide for Parents Appendix B: Interview Guide for Special Education Teachers Appendix C: Interview Guide for General Education Teachers Appendix D: Document Review Guide Appendix E: Informed Consent Form for Parents

14 Chapter Page Appendix F: Informed Consent Form for Teachers Appendix G: Letter to Superintendent of Schools Appendix H: Letter to Parents Appendix I: Letter to Teachers Appendix J: Letter from Peer Auditor VITA

15 LIST OF TABLES Table Page 1. Demographic Information About Parent Participants And Their Children With ASD Demographic Information About Special Education Teacher Participants Demographic Information About General Education Teacher Participants Sources Of Training And Knowledge For Study Participants About Educating Children With ASD

16 CHAPTER 1 INTRODUCTION Over half a century has passed since Kanner (1943) first observed young children with a behavioral syndrome he labeled autistic disturbances of affective contact (p. 250), characterized by delayed language development, impaired social interaction, aloofness, poor eye contact, repetitive behavior, and an intense desire for routine. Based on Kanner s work, the medical community began to treat some children with what became known as early infantile autism, but educators remained largely unaware of the condition. By mid-twentieth century the condition was thought to be quite rare, with the prevalence of autism estimated to be only 4 to 5 in 10,000 children (American Academy of Pediatrics, 2001). Since Kanner s (1943) early work the definition of autism has been revised and expanded by the American Psychiatric Association (2000) in the Diagnostic and Statistical Manual of Mental Disorders (4 th ed., text revision, DSM-IV-TR) to include a broad range of autism spectrum disorders including Autistic Disorder, Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), Asperger s Disorder, Rett s Disorder, and Childhood Disintegrative Disorder. Although symptoms vary in severity, children with autism spectrum disorders exhibit significant impairment in social interaction and communication skills along with restricted interests and repetitive, stereotyped patterns of behavior (DSM-IV-TR, 2000). Such characteristics make implementing effective educational programs for children with autism spectrum disorders an extremely challenging task for parents and educational professionals. Children with autism were largely unrecognized by the educational community until 1975 when the Education for all Handicapped Children Act (EHA) established the right of children with disabilities to receive a free and appropriate public education (FAPE). However, this law did not list autism as a specific disability category. The limited number of children with autism who received special education services beginning in 1975 were often served under another disability such as mental retardation. In 1990 a seismic shift occurred when autism 15

17 was specifically listed as a disability category in the Individuals with Disabilities Education Act (IDEA, 1990), a federal law that reauthorized and expanded EHA, ensuring the right to a public education including special education and related services for children with disabilities. Partly due to the broadening definition of autism (DSM-IV-TR, 2000), partly due to the inclusion of autism as a disability category in IDEA (1990), partly due to improved diagnostic methods, and in large part due to unknown factors, there has been a dramatic increase in the prevalence of autism throughout the United States (Centers for Disease Control and Prevention, 2010). The Centers for Disease Control and Prevention (2010) currently estimates that an average of 1 in 110 children in the United States has an autism spectrum disorder, with boys 4 to 5 times more likely to be affected than girls. An estimated 1.5 million people in the United States are affected by autism at a cost to the nation of $35 billion annually, and more children are diagnosed with autism each year than with diabetes, AIDS, and cancer combined (Autism Speaks, 2010). Amid controversies over best practices for intervention, threats of litigation, and lack of adequate training for school personnel, America s public schools are confronted with this explosive increase in the number of students with autism spectrum disorders. Between 1992 and 2007 the number of children (ages 3-21) with autism receiving public special education services in the United States increased from 19,000 (U.S. Department of Education, 1996) to 297,739 (Individuals with Disabilities Education Act [IDEA] Data, 2007). I have witnessed this explosion first-hand in my work as a school psychologist. When I first began my career in 1975, the school district where I work provided special education services to only two children with autism. By contrast this school district is now quickly approaching the Center s for Disease Control (2010) prevalence rate of 1 in 110. Five years ago the district had to add a third preschool special education class to provide services for the increasing number of preschoolers with autism entering the system. As these young children progress through higher grade levels, many teachers are encountering their first experience of working with an autistic child. My school system is not alone in facing this seismic shift. 16

18 Between 1997 and 2006 the state of Tennessee witnessed a 370% increase in the number of children with autism (ages 3-21) receiving special education services (Tennessee Department of Education, 1997, 2006). The impact of the increasing prevalence of autism on families and educators who provide services to children with autism spectrum disorders (ASD) cannot be underestimated. An ASD diagnosis forges a relationship between education professionals and families that is necessary, interdependent, and similar to an arranged marriage with no possibility of divorce. This relationship can be tenuous and fraught with conflict or it can be supportive, mutually beneficial, and extremely rewarding (Stoner & Angell, 2006, p. 177). The No Child Left Behind Act of 2001 (2002) and the 2004 reauthorization of IDEA, the Individuals with Disabilities Education Improvement Act (still commonly referred to as IDEA) require educators to adopt researchbased practices when working with students with disabilities. IDEA (2004) also mandates parental involvement in all aspects of a child s education. Literally hundreds of quantitative research studies have been conducted documenting research-based interventions and practices for teaching children with ASD, yet educators and parents often find the research literature too vast and time-consuming to master, not to mention contradictory and confusing. Furthermore, in my own review of the literature I was surprised to find only a handful of qualitative research studies on the perceptions of parents of children with autism spectrum disorders and teachers regarding various educational interventions for children with ASD. I found even fewer studies that included both parents and teachers as participants for the purpose of comparing and contrasting the views of multiple stakeholders. For example Matson, Benavidez, Compton, Paclawskjy, and Baglio (1996) reviewed over 500 quantitative research studies and reported that applied behavior analysis (ABA) consistently offers positive outcomes for children with ASD in terms of enhancing communication, social, and adaptive skills. Yet as of 2004, Dillenburger, Keenan, Gallagher, and McElhinney reported finding only one study in the literature addressing the question of how parents perceive and evaluate ABA programs, although this is one of the most widely used educational interventions for children with autism 17

19 spectrum disorders. Studies regarding teacher perceptions of educational interventions for children with ASD are also quite limited. The few studies that exist have focused primarily on teacher perceptions about inclusion of children with ASD in general education classrooms. The current study grew out of my own curiosity as a school psychologist about the thoughts and perceptions of educators and parents regarding educational interventions for children with autism spectrum disorders in the school system where I work. I was also motivated by my perception of a clear gap in the existing research on this topic. In my opinion it is not enough for educators to focus on quantitative research findings about the efficacy of various educational interventions for children with ASD. They must also take into consideration the impact of those interventions on the real life experiences of parents and teachers. In order to build strong collaborative relationships with parents of children with autism disorders and fully all stakeholders as equal partners in planning and implementing educational interventions, as mandated by IDEA (2004), it is imperative that educators and parents seek to understand one another s views, feelings, and experiences. Everyone involved in planning educational programs for children with ASD must seek a deeper understanding of parent and teacher perceptions about their experiences with various educational interventions for these children. What educational interventions and practices do they find helpful and why? What are the barriers and challenges they face in providing services for these children? How do they view their experiences in collaborating with one another as they strive to meet the educational needs of children with autism? Unfortunately, few studies have been conducted on the perceptions of parents of children with ASD or their teachers regarding these children s educational programs. Until more research is done examining the experiences and views of both educators and parents of children with ASD, these vital stakeholder groups cannot truly share equal roles as partners in planning educational programs for children with autism spectrum disorders. In summary the current qualitative case study arose from my discernment of the need for qualitative research regarding parent and teacher perceptions to provide a richer understanding of their personal experiences with educational services and interventions for children with ASD. I 18

20 was particularly interested in exploring the successes and challenges experienced by parents and teachers in one school system that, not unlike others throughout the United States, has been faced with an explosive increase in the number of children with autism disorders entering classrooms throughout the district. Purpose of the Study The purpose of this qualitative case study was to investigate the perceptions of parents of children with autism spectrum disorders (ASD), special education teachers, and general education teachers regarding educational interventions for children with ASD in a Northeast Tennessee public school system. I explored the attitudes, opinions, and experiences of three key stakeholder groups regarding the successes and barriers they have experienced in meeting the educational needs of these children, what interventions and teaching strategies they have found most helpful and effective, and how they view their relationships with one another. My hope was that the views of these stakeholders with comparison of points of agreement and divergence could be used to increase understanding and collaboration among parents and educators and to positively impact educational programs for children with ASD in the school system that was the site of study and among others who may learn from their experience. Research Questions Four research questions provided a framework for the study: 1. What educational interventions have parents of children with autism spectrum disorders (ASD), special education teachers, and general education teachers used to address the educational needs of children with ASD, and what have been their experiences with those specific interventions? 2. What educational methods, practices, and interventions do parents of children with ASD, special education teachers, and general education teachers perceive to be helpful and effective in meeting the educational needs of children with ASD? 19

21 3. What are the barriers and challenges that parents of children with ASD, special education teachers, and general education teachers have experienced in meeting the educational needs of children with ASD? 4. What are the perceptions of parents of children with ASD, special education teachers, and general education teachers regarding their experiences and relationships with one another in meeting the educational needs of children with ASD? Significance of the Study Although hundreds of quantitative studies have been conducted on the effectiveness of numerous educational and behavioral interventions for children with autism spectrum disorders (ASD), only a handful of qualitative studies have been conducted examining parent and teacher perceptions regarding those interventions. The current study was designed to add to knowledge about parent and teacher perceptions of educational interventions for children with autism disorders. Study results may help to fill a major gap in the existing literature on the topic that was the focus of study. Furthermore, my purpose in examining the experiences and views of both parents and educators was to provide a richer understanding of multiple perspectives regarding the efficacy of various educational interventions, the barriers and problems faced with implementation, and the impact of specific interventions on the lives of children, their families, and their teachers. Themes that emerged from the current study regarding parent and teacher perceptions of facilitators and barriers to effective intervention could be used to strengthen existing educational programs and services for children with ASD in the school system that was the site of study. Study results could provide guidance for school district staff and policy makers regarding ways to strengthen and improve Individual Educational Programs (IEPs) and IEP Team processes. Information gained might also assist school staff in planning professional development training for school personnel in specific interventions found most effective. 20

22 Parent and teachers need to build strong collaborative relationships that truly include parents as equal partners in planning and implementing Individual Education Programs (IEPs) for children with autism disorders as mandated by IDEA (2004). As a foundation for teamwork parents and educators must seek to understand one another s attitudes, perceptions, and experiences. This in-depth qualitative case study focused on the perceptions of parents and teachers regarding educational interventions for children with ASD to facilitate mutual understanding of the challenges parents and educators face and how both groups view parentteacher partnerships in working together to meet these children s needs. The themes and understandings that emerged from a comparison and contrast of parent and teacher perceptions could provide parents, special education teachers, and general education teachers with new insights from other points of view. Enhanced understanding of the perspectives of all stakeholders could facilitate more effective dialogue, communication, and team-work as they collaborate to develop IEPs and meet the needs of children with autism spectrum disorders. Although this research was a qualitative case study with study results limited to a particular school system, parents and educators in other school systems might gain insights from study findings that enhance or challenge their own views regarding various educational interventions and instructional methods for children with ASD. Insights gained from this study might assist other educators and parents in meeting challenges, reducing barriers, and strengthening their own collaboration in implementing effective educational interventions for children with ASD. Scope of the Study This study was a qualitative case study (Merriam, 1998) bounded by the parameters of one school district and purposeful sampling of seven parents, eight special education teachers, and six general education teachers from a Northeast Tennessee public school system. The study was delimited to a purposeful sample of seven parents of students in grades PreK-12 who were receiving special education services in accordance with IDEA (2004) under the disability 21

23 category of Autism, which in Tennessee includes students who have been diagnosed with any autism spectrum disorder including Autism, Pervasive Developmental Disorder-Not Otherwise Specified, Asperger s Syndrome, Rett s Disorder, or Childhood Disintegrative Disorder (Tennessee Department of Education, 2010a). The study was delimited to a purposeful sample of eight special education teachers employed in the school system at the time of the study who had experience during the school year or prior 2 school years in providing educational services to students with autism spectrum disorders (ASD) in grades PreK-12 in a general education inclusion setting, a resource room setting, or a self-contained special education classroom. The study was further delimited to a purposeful sample of six general education teachers employed in the school system at the time of the study who had experience during the or prior 2 school years in providing educational services to students with autism spectrum disorders (ASD) in an inclusive general education setting at the preschool, elementary, or secondary level. Data were collected by individual interviews and document reviews. The research study was further limited by the nature of qualitative research in which data collected represent the perceptions and experiences of the participants in the study and cannot be generalized beyond the scope of the study. Themes and categories that emerged from the data are not intended to represent the perceptions and experiences of all parents of children with autism spectrum disorders, all special education teachers, or all general education teachers. Although purposeful sampling was conducted for maximum variation, it is also possible that experiences and views of the participants sampled do not fully represent those of other parents and educators within the school system that was the site of study. Researcher s Bias In my role as a school psychologist I have been trained in the diagnosis and assessment of children with autism spectrum disorders for special education purposes. I regularly participate with other IEP Team members in assessing children with ASD and designing their individual educational programs (IEPs). I have occasionally collaborated with other school staff in 22

24 providing in-service workshops for teachers and paraprofessionals on teaching methods for children with autism spectrum disorders. My experiences as a school psychologist, while unique to me, have helped to build empathy and understanding with parents of children with ASD and their teachers. As an employee of the school system that was the site of study, my role in the current study was that of participant observer and researcher. My presence in the school system allowed immersion in the field of study over an extended period of time, thereby strengthening my ability to understand the experiences of participants in that setting from the perspective of the emic, or insider s perspective, as required in qualitative research (Merriam, 1998). I have developed close, collaborative relationships with many special education teachers and general education teachers in the district, and I have deep empathy for the challenges faced by parents and teachers of children with ASD. The relationships of mutual trust and support that I have built with colleagues provided a foundation for establishing empathy, openness, and trust with participants in interview situations. However, some participants may have felt reluctant to express their true feelings or negative perceptions to someone whom they knew in the work setting. To help control for this I assured all participants of full confidentiality and anonymity, that only pseudonyms would be used in interviews, and that no names or personally identifying information would be included in interview transcripts, copies of documents gathered, or the final research report. I also assured participants that the purpose of the study was not to criticize or evaluate their school system but rather to provide a voice for parents and educators that may lead to deeper understandings of how to provide effective interventions for children with autism disorders. Stringent methods to control for researcher bias were used to ensure that the participants own perceptions, experiences, and views emerged in interview data and the analysis of study findings, not the researcher s perceptions. As a qualitative researcher I understood that I could not be totally neutral, objective, or detached. Rather than denying human subjectivity, I took it into account through strategies designed to monitor and evaluate my own subjectivity and 23

25 enhance reflexivity (McMillan & Schumacher, 2006). Reflexivity involves rigorous examination of one s personal and theoretical commitments to see how they serve as resources for selecting a qualitative approach, framing the research problem, generating particular data, relating to participants, and developing specific interpretations (McMillan & Schumacher, 2006, p. 327). Pillow (2003) stated that reflexivity in qualitative research requires personal selfawareness, respect for others with an insistence on letting them speak for themselves, being accurate in gathering the truth about their stories and experiences, and transcending one s own subjectivity to maintain accuracy in reporting. In order to enhance reflexivity and monitor the impact of my own subjectivity, I used a journal to record decisions made in the field and my thoughts and personal reactions throughout the field work (McMillan & Schumacher, 2006). I also kept a field log to maintain a chronological record by date, time, and place spent in the field including activities used to gain access to sites, participants, and documents. I diligently tried not to reveal to participants any of my own preconceptions or personal biases regarding educational interventions, programs, or services for children with ASD. Finally, in order to make sure that my own bias did not interfere with the interpretation of the findings, I maintained an audit trail for inspection and confirmation by an independent auditor (Lincoln & Guba, 1985; McMillan & Schumacher, 2006). Definition of Terms The following terms are defined as follows for the purpose of this study: Autism: A developmental disability generally evident before age 3 that is characterized by qualitative impairment in communication and reciprocal social interaction, repetitive activities and stereotyped movements, and restricted patterns of interest (American Psychiatric Association, DSM-IV-TR, 2000). The term can refer exclusively to Autistic Disorder (DSM-IV- TR, 2000) but is often used in the research literature to refer to a broad range of Autism Spectrum Disorders. 24

26 Autism Spectrum Disorders (ASDs): A broad range of autistic disorders that vary in severity of symptoms, age of onset, and association with other disorders such as mental retardation (National Research Council, 2001). In the research literature the term is often used interchangeably with the term autism. Therefore, for the purpose of this study the terms autism and autism spectrum disorder (ASD) have been used to mean the same thing unless otherwise noted. Autism spectrum disorders include five Pervasive Developmental Disorders that involve significant impairment in reciprocal social interaction skills and communication skills and the presence of stereotyped behaviors and restricted interests (DSM-IV-TR, 2000). Pervasive Developmental Disorder (PDD): The term used by the American Psychiatric Association (DSM-IV-TR, 2000) for the broad range of autism spectrum disorders including the following: 1. Autistic Disorder: Essential features for diagnosis include significant impairment in reciprocal social interaction and communication, repetitive and stereotyped behaviors, interests, and activities, and age of onset prior to 3 years (DSM-IV-TR, 2000). 2. Asperger s Disorder: Essential features for diagnosis include qualitative impairment in social interaction and restricted, stereotyped behaviors, interests, and activities. Persons with Asperger s Disorder function at the higher end of the autism spectrum because they do not have any significant delay in language development, cognitive development, or adaptive behavior skills. They may have difficulty understanding the intricacies of social communication and reading social cues such as facial expressions, body language, and gestures, resulting in a lack of social or emotional reciprocity (DSM-IV-TR, 2000). 3. Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS): This diagnosis includes atypical autism and is made when some but not all of the criteria for Autistic Disorder or another Pervasive Developmental Disorder are met (DSM-IV- TR, 2000). 25

27 4. Rett s Disorder: This relatively rare autism spectrum disorder has an age of onset sometime between 6 and 18 months. After a brief period of apparently normal development, regression and loss of ability occur in gross motor skills along with loss of previously acquired purposeful hand skills, resulting in stereotyped hand movements such as hand wringing or hand washing. This disorder is found almost exclusively in females and is associated with severe language impairment and severe to profound mental retardation (DSM-IV-TR, 2000). 5. Childhood Disintegrative Disorder: Following a period of at least 2 years of apparently normal development, there is a rapid loss of previously acquired skills such as bowel or bladder control, play or social skills, and language skills. The regression typically occurs between ages 3 and 4 years and prior to age 10 and is usually associated with severe mental retardation (DSM-IV-TR, 2000). Individuals with Disabilities Education Act (IDEA) (1990; amended 1997, 2004): A federal law ensuring special education and other services for children with disabilities throughout the United States. Commonly referred to as IDEA, the law regulates how states and public schools provide early intervention, special education, and related services to eligible children and youth with disabilities. From birth through age 2, infants and toddlers with disabilities and their families receive early intervention services under IDEA Part C. Children and adolescents ages 3-21 receive special education and related services under IDEA Part B, which requires that states and local educational agencies (LEAs) provide a free appropriate public education (FAPE) to children in 13 disability categories in the least restrictive environment (LRE) appropriate to meet a child s individual needs in accordance with an Individual Education Plan (IEP). Individualized Education Program (IEP): A written plan for each child with a disability that is developed, reviewed, and revised in an IEP Team meeting in accordance with the provisions of IDEA. The IEP must include information about the child s current levels of academic and functional performance; measurable annual goals and how progress toward goals will be measured; information about special education services and supplementary aids and 26

28 services to be provided; a list of any classroom modifications and any individual appropriate accommodations to be provided on State assessments; justification for the decision if the IEP Team determines that a child must take an alternate assessment instead of a regular State assessment of student achievement; and an explanation of the extent (if any) to which the child will not participate with nondisabled children in the general education program (Individuals with Disabilities Education Improvement Act, 2004, 20 U.S.C (d)(1)[a]). Individualized Education Program Team (IEP Team): A group of individuals responsible for determining eligibility for special education services under the provisions of IDEA, and for developing or revising an Individualized Education Program (IEP) for a student eligible for special education. IDEA (2004) specifies the following IEP Team members: (i) the parents of a child with a disability; (ii) not less than 1 regular education teacher of such child (if the child is, or may be, participating in the regular education environment); (iii) not less than 1 special education teacher, or where appropriate, not less than 1 special education provider of such child; (iv) a representative of the local educational agency (v) an individual who can interpret the instructional implications of evaluation results (vi) at the discretion of the parent or the agency, other individuals who have knowledge or special expertise regarding the child, including related services personnel as appropriate; and (vii) whenever appropriate, the child with a disability. (20 U.S.C. 1414(d)(1)[B]) Least Restrictive Environment (LRE): Refers to the requirement of IDEA (1990, 1997, 2004) that children with disabilities have the opportunity to be educated with nondisabled peers to the maximum extent appropriate. Supplementary aids and services must be provided as needed to enable students with disabilities to achieve educational goals in the general education setting to the greatest extent possible. IDEA requires the IEP Team to consider placement in the regular education classroom as the starting point for their determination of the least restrictive environment, followed by a continuum of available placements extending from the regular education classroom to part-time resource room services, self-contained special education classrooms, and finally residential settings. The degree to which a child is removed from the 27

29 general education environment to a more restrictive setting depends upon a child s individual needs as determined by the IEP Team. Special Education: Refers to a range of individualized educational and social services provided by public school systems to students with disabilities ages 3-21 in accordance with the provisions of Part B of the Individuals with Disabilities Education Act (1990, 1997, 2004). Special education may include individual or small group instruction, specialized curriculums or instructional interventions, teaching modifications, counseling services, assistive technology, transition services, and services such as physical, occupational, and speech therapy. Special Education Teacher: A teacher who provides individualized education services to children and youth who have a variety of disabilities. All 50 states requires licensure, with type of license varying by state. In Tennessee special education teachers must hold licensure in one of the following endorsements: special education, modified program (K-12); special education, comprehensive program (K-12); special education, vision (PreK-12); special education, hearing (PreK-12); special education, speech-language (PreK-12); and special education, preschool, early childhood (PreK-4) (Tennessee Department of Education, 2009). Special education teachers work with students with disabilities in a variety of settings including self-contained special education classrooms, resource rooms where students receive part-time specialized instruction, and general education inclusion classrooms where they assist general education teachers in adapting instructional methods to meet the unique needs of students with disabilities. Inclusion: A term that has been used in a variety of ways in the literature. For purposes of this study inclusion refers to a commitment to educate children with disabilities to the maximum extent appropriate in the regular education classrooms and schools they normally would attend, with modifications as defined by the IEP (Villa & Thousand, 2003). Inclusion often involves bringing special education and support services to the child as opposed to moving the child to the services. According to this view of inclusion thse child only has to benefit in some way from being in the general education classroom (e.g., opportunities to model age-appropriate language 28

30 and social skills) as opposed to being required to keep up with peers academically (Simpson, de Boer-Ott, & Smith-Myles, 2003). Overview of the Study This qualitative case study is presented in five chapters. Chapter 1 provided an introduction, the purpose of the study, research questions, the significance of the study, limitations and delimitations of the study, definitions of terms used, and an overview. Chapter 2 contains a review of the literature including information about the characteristics, diagnostic criteria, etiology, and prevalence of children with autism spectrum disorders (ASD); a review of research relevant to specific educational interventions, programs, and characteristics of effective instructional practices; and a review of qualitative studies of parent and teacher perceptions of educational interventions and practices for children with ASD. Chapter 3 describes the methodology and procedures used in the study. Chapter 4 presents the study findings and analysis of data gathered through individual interviews and a review of documents. Chapter 5 contains a summary of the findings, conclusions, and recommendations for practice and future research. 29

31 CHAPTER 2 REVIEW OF RELATED LITERATURE Introduction As a foundation for understanding the nature of autism spectrum disorders (ASD) and the legal requirements and challenges educators currently face in providing effective educational programs and services for children with ASD, this review of the literature begins with a description of the general characteristics of children with autism spectrum disorders (ASD), medical, federal, and state diagnostic criteria and definitions, information about etiology and prevalence, and a summary of how federal and state legislation impacts educational programming and planning for children with ASD. The next section of this literature review addresses educational interventions for children with autism that have empirical support for their efficacy based on peer reviewed research. Such interventions include various forms of applied behavior analysis ranging from more traditional discrete trial training to naturalistic teaching methods such as incidental teaching, pivotal response training, and milieu teaching. Other approaches such as structured teaching are also reviewed. Specific social skills interventions such as adult and peer modeling, priming, and the use of social stories are discussed. Augmentative and alternative communication strategies such as the use of picture exchange systems and manual signs and gestures are described followed by interventions targeting sensory and motor issues. This section concludes with a summary of essential characteristics of effective educational interventions for children with autism that are common to a broad range of empirically supported methods and treatment programs. Because this is a qualitative research study investigating the perceptions of parents of children with autism spectrum disorders and teachers regarding educational interventions for children with ASD, it is also important to review the research literature on this subject. Unfortunately, there are very few studies in the literature addressing perceptions, experiences, 30