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An Investigation of Lived Experiences and Perspectives of Individuals on the Autism Spectrum with Respect to Communicative Interventions

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An Investigation of Lived Experiences and Perspectives of Individuals on the Autism Spectrum with Respect to Communicative Interventions The College of Wooster Open Works Senior Independent Study Theses 2019 Language of Disability, Language of Disorder: An Investigation of Lived Experiences and Perspectives of Individuals on the Autism Spectrum with Respect to Communicative Interventions Rebekah Burkhart The College of Wooster, [email protected] Follow this and additional works at: https://openworks.wooster.edu/independentstudy Part of the Disability Studies Commons, Medical Humanities Commons, and the Speech Pathology and Audiology Commons Recommended Citation Burkhart, Rebekah, "Language of Disability, Language of Disorder: An Investigation of Lived Experiences and Perspectives of Individuals on the Autism Spectrum with Respect to Communicative Interventions" (2019). Senior Independent Study Theses. Paper 8642. This Senior Independent Study Thesis Exemplar is brought to you by Open Works, a service of The College of Wooster Libraries. It has been accepted for inclusion in Senior Independent Study Theses by an authorized administrator of Open Works. For more information, please contact [email protected]. © Copyright 2019 Rebekah Burkhart LANGUAGE OF DISABILITY, LANGUAGE OF DISORDER: AN INVESTIGATION OF LIVED EXPERIENCES AND PERSPECTIVES OF INDIVIDUALS ON THE AUTISM SPECTRUM WITH RESPECT TO COMMUNICATIVE INTERVENTIONS by Rebekah Burkhart An Independent Study Thesis Presented in Partial Fulfillment of the Course Requirements for Senior Independent Study: The Department of Communication March 15, 2019 Advisor: Joan E. Furey, Ph.D. ABSTRACT The primary purpose of this study was to investigate the lived experiences and first-person perspectives of individuals with Autism Spectrum Disorder (ASD) with respect to interventions for communicative differences and/or deficits characteristic of autism. This study extends limited research into autistic experiences of interventions in the domain of communication. Furthermore, by extending prior research into neurodiverse values among speech-language pathologists (SLPs), this research contributes to the body of professional literature through exploration of autistic voices as in-group sources of expertise on ASD. The researcher recruited participants online, utilizing mixed methods in the form of quantitative surveys and qualitative interviews to collect and analyze data on the experiences and perspectives of autistic adults. Major conclusions of this research include the finding that participants’ experiences with communicative interventions, though on average reported to be slightly more positive than neutral, vary widely. In addition, participants valued most highly aspects of intervention that emphasized autistic clients’ autonomy and demonstrated respect for the individual expertise held by autistic people. One practical implication of this research is the need for SLPs to carefully consider intended and unintended effects of treatment on the lives of clients, in order to reduce bias and offer clients and families more comprehensive and accessible resources and perspectives to make more fully informed decisions. Keywords: autism or autism spectrum disorder (ASD), speech-language pathologists (SLP), lived experience, models of disability, neurodiversity, self-advocacy ii ACKNOWLEDGEMENTS While this Independent Study is the product of my own work, it would not be possible without the support and contributions of so many others to whom I owe so much. I would like to thank Dr. Joan Furey, my Independent Study advisor and mentor, for her considerable time and thought in guiding me through this research process and offering feedback and new ideas for future directions in countless meetings. Thank you for your time, expertise, support, and patience, all of which have been critical to my success at the College of Wooster. I would also like to thank Dr. Michelle Johnson for her expertise, perspective, and dedication of time as my second reader. I would like to thank Tessa Hall at the Writing Center for her expertise in editing, proofreading, interpreting, and listening over the course of three semesters of weekly appointments. Not only could I count on you to help me in shaping my writing in order to most effectively communicate my thinking and my research, but furthermore, you always had a kind word to offer and your confidence in me, although initially alarming, became reassuring. Thank you for your encouragement, positivity, and honesty; thank you for being a constant on whom I could always count during this process. I would like to thank Dr. Donald Goldberg, my former academic advisor, for the guidance and encouragement he has provided in the processes of acclimating to college, applying to and preparing for study abroad, planning and progressing through courses, and researching and preparing for the next great adventure of graduate school. Without your encouragement, I may never have taken the chance to pursue a semester’s study in Chile; I will always appreciate the careful push to reach out of my comfort zone and continually challenge myself. iii I would like to thank my family and friends, without whom I could never have completed such an undertaking as this research thesis. Thank you to my parents and to my brother, Joseph, for your unconditional support. Thank you for being a sounding board for ideas, connections, frustrations, fears, and solutions; your perspectives have been invaluable in reframing challenges and questions as opportunities for growth. Thank you to Kate Seader for listening, engaging with the ideas and values about which I am passionate, and encouraging me, always, to use that passion as a driving force for change. To my friends—thank you for accepting me as I am and supporting me in where I am going. I wouldn’t be who I am today without your kindness and generosity; honesty when I need help correcting course; encouragement when I’m struggling; and solidarity in screaming together. The passion, drive, and unique talents that I see in each of you are inspiring, and as sad as I will be to leave the College of Wooster and go our separate ways, I am so excited to find out what the future holds for each of us. Finally, I would like to thank Dr. Kirstin Milks—for never doubting that I could. Beyond academic content and skills, you taught me so much more about compassion, intentionality, advocacy, and dignity. You continue to inspire me to achieve more highly than I dreamed possible, and to never stop learning. Thank you for believing in me. iv TABLE OF CONTENTS CHAPTER I: INTRODUCTION .................................................................................................... 1 Purpose Statement ............................................................................................................... 2 Rationales ............................................................................................................................ 2 Definitions........................................................................................................................... 5 Background ......................................................................................................................... 6 Description of Method ........................................................................................................ 8 Conclusion .......................................................................................................................... 8 CHAPTER II: LITERATURE REVIEW ..................................................................................... 10 Autism as a Spectrum ....................................................................................................... 11 Review of Speech-Language Interventions for ASD ........................................................ 12 Models of Disability ............................................................................................. 13 Overview of Approaches to Treatment for ASD .................................................. 14 Communicative Intervention Methods and Models .............................................. 15 Augmentative and alternative communication ......................................... 16 Social skills training .................................................................................. 16 Factors in Determination of Desired Intervention Outcomes ........................................... 17 Target Population and Goals of Treatment ........................................................... 18 Stakeholders .......................................................................................................... 18 Consideration of Autistic Voices ...................................................................................... 19 State of the Neurodiversity Movement with Respect to ASD .............................. 19 History....................................................................................................... 19 Central premises and predominant themes ............................................... 21 Key Organizations and Advocacy Groups ............................................................ 30 In-group vs. out-group voices ................................................................... 30 v Societal and clinical implication of autistic self-advocacy ....................... 34 Conclusion ........................................................................................................................ 35 CHAPTER III: METHOD ...........................................................................................................
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