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Personal Meanings of Restricted and Repetitive Behaviors Among Midlife Adults with Asperger Syndrome Leila Marie Shirley Walden University

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Personal Meanings of Restricted and Repetitive Behaviors Among Midlife Adults with Asperger Syndrome Leila Marie Shirley Walden University Walden University ScholarWorks Walden Dissertations and Doctoral Studies Walden Dissertations and Doctoral Studies Collection 2018 Personal Meanings of Restricted and Repetitive Behaviors Among Midlife Adults with Asperger Syndrome Leila Marie Shirley Walden University Follow this and additional works at: https://scholarworks.waldenu.edu/dissertations Part of the Developmental Psychology Commons This Dissertation is brought to you for free and open access by the Walden Dissertations and Doctoral Studies Collection at ScholarWorks. It has been accepted for inclusion in Walden Dissertations and Doctoral Studies by an authorized administrator of ScholarWorks. For more information, please contact [email protected]. Walden University College of Social and Behavioral Sciences This is to certify that the doctoral dissertation by Leila Marie Shirley has been found to be complete and satisfactory in all respects, and that any and all revisions required by the review committee have been made. Review Committee Dr. Virginia Salzer, Committee Chairperson, Psychology Faculty Dr. Barbara Chappell, Committee Member, Psychology Faculty Dr. Andrea Goldstein, University Reviewer, Psychology Faculty Chief Academic Officer Eric Riedel, Ph.D. Walden University 2018 Abstract Personal Meanings of Restricted and Repetitive Behaviors Among Midlife Adults with Asperger Syndrome by Leila Marie Shirley MSEd, Old Dominion University, 1985 BS, Old Dominion University, 1983 Dissertation Submitted in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy Psychology Walden University May 2018 Abstract Restricted and repetitive behaviors (RRBs) are some of the hallmark features of autism spectrum disorder (ASD) symptomatology. There is a knowledge gap on RRBs in adults with ASD because most of the research has focused on children and adolescents. The few studies conducted on adults with ASD have included conflicting results and variable information, especially regarding the developmental trajectories of RRBs. Therefore, this study was designed to address the lived experiences of RRBs in midlife adults with Asperger syndrome. This study was guided by the conceptual frameworks of Dunn's model of sensory processing, the 2-factor model of RRBs, and phenomenological theory. A phenomenological approach was used to conduct semistructured interviews in which 15 adults with Asperger syndrome sampled worldwide described their experiences. Participants also wrote narrative accounts. The data were analyzed through interpretative phenomenological analysis. Eight basic themes emerged from the data analysis regarding the importance of RRBs to adults with Asperger syndrome: (a) anxiety, (b) calming effect, (c) intense focus, (d) routines and rituals, (e) sensory sensitivity, (f) misinterpretation by others, (g) physical stereotypies, and (h) special interests. Findings associated with these themes showed that RRBs are used by adults with Asperger syndrome as a coping mechanism for dealing with anxiety. Treatment should focus on the elimination of the anxiety rather than the RRBs, which are just a symptom of the anxiety. The implications for positive social change include the emergence of new knowledge to promote an improvement in diagnosis, treatment, advocacy, and supportive services, thereby decreasing inequalities that exist for adults with ASD. Personal Meanings of Restricted and Repetitive Behaviors Among Midlife Adults with Asperger Syndrome by Leila Marie Shirley MSEd, Old Dominion University, 1985 BS, Old Dominion University, 1983 Dissertation Submitted in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy Psychology Walden University May 2018 Dedication This study is dedicated to the following persons who have had a profound effect on my development which I consider still a work in progress. First and foremost, my mother, Cecilia S. Shirley, who from the very beginning strongly encouraged me to pursue academic excellence in spite of the numerous obstacles that I encountered with my own learning and development. If it were not for my mother’s unconditional love for me and her steadfast faith in my abilities, I would not have reached this far in academia. She is my kindred spirit as she continues to motivate me to get this dissertation accomplished despite her having to deal with the overwhelming effects of aging and terminal illness. Her strength to continue to live despite her prognosis is a powerful testimony of what can be accomplished through faith, hope, and love. Her strong will to live is analogous to my own refusal to give up on finishing this dissertation. Second, my former supervisor and mentor of 25 years, Cynthia E. Haggins, who worked with me on the job by allowing me to develop my various gifts and talents, as well as allowed me to focus on my special interests. She allowed me to be myself, and she challenged me on numerous occasions, giving me the equal opportunity to excel at many tasks. Most importantly, she accepted me regardless of my differences. Third, this dissertation is dedicated to all persons who live on a daily basis with the varying symptoms of ASD. Acknowledgments I would like to take this opportunity to thank several individuals who have supported me throughout this process. Without them, this dissertation would not have been possible. I would like to thank my mother, Cecilia S. Shirley, for her continuous encouragement for me to stay on this journey no matter what. I would like to thank my coworker and friend, S. Denise Grant, for putting up with me during the ups and downs of the dissertation process which I refer to as the academic roller coaster ride. I would like to thank all of those Facebook friends with their encouraging and insightful posts, including their responses to my adventurous dissertation updates. I would like to thank my Chair, Dr. Virginia Salzer, for taking on the role as Chair, as well as her ongoing encouragement, guidance, counseling, support, and feedback during the dissertation process. I would like to thank my Committee Member, Dr. Barbara Chappell, for her ongoing encouragement, guidance, and feedback during the dissertation process. I would like to thank Dr. Andrea Goldstein simply for being my University Research Reviewer. I would like to thank Susan Rueger, my editor, for the time and encouragement she gave me as we brought this dissertation to closure. Most of all, I would like to thank my Creator, the Almighty God, for making this opportunity possible by allowing me to have the intellectual prowess to accomplish such a feat. Table of Contents List of Tables .................................................................................................................... vii Chapter 1: Introduction to the Study ....................................................................................1 Introduction ....................................................................................................................1 Background Information ................................................................................................2 An Overview of the Research on RRBs and the Need for this Study ..................... 3 Problem Statement .........................................................................................................3 Purpose of the Study ......................................................................................................5 Research Question .........................................................................................................6 Conceptual Framework and Theoretical Foundations ...................................................6 Dunn's Model of Sensory Processing ..................................................................... 6 Two-Factor Model of RRBs ................................................................................... 8 Symptom Trajectories Over Time in ASD ............................................................. 9 Phenomenological Theory .................................................................................... 10 Nature of the Study ......................................................................................................11 Rationale for Qualitative Approach ...................................................................... 11 Phenomenon Investigated ..................................................................................... 12 Strategies for Validation ....................................................................................... 12 Data Collection Method ........................................................................................ 13 Sources of Data ..................................................................................................... 13 Analysis of Data .................................................................................................... 13 Operational Definitions ................................................................................................14 i Assumptions .................................................................................................................17 Scope and Delimitations ..............................................................................................18 Scope of the Study ................................................................................................ 18 Population Delimitations ...................................................................................... 18 Theoretical/Conceptual
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