Spirituality in the Context of Nonverbal Autism Author Hills, Karenne J. Published 2019-10-08 Thesis Type Thesis (PhD Doctorate) School School of Human Serv & Soc Wrk DOI https://doi.org/10.25904/1912/880 Copyright Statement The author owns the copyright in this thesis, unless stated otherwise. Downloaded from http://hdl.handle.net/10072/388655 Griffith Research Online https://research-repository.griffith.edu.au Spirituality in the Context of Nonverbal Autism Karenne Joy Hills Bachelor of Nursing GU – 1997 Bachelor of Counselling UNE – 2001 Master of Counselling CHC – 2012 Graduate Certificate Couple Counselling CHC – 2013 School of Human Services and Social Work Faculty of Health Griffith University Submitted in fulfilment of the requirements of the degree of Doctor of Philosophy April 2019 ii KEYWORDS Spirituality; Nonverbal Autism; Theology; Imago Dei; Language; Silence; Mystery; Inclusion iii ABSTRACT This thesis explored the spirituality of people who are not able to typically express a belief or understanding of traditional religious doctrine. The study is underpinned by the theological premise that honours the inherent value and worth of all human beings as carriers of the Imago Dei – created in the image of God. When the life context of someone prevents the intellectual, communicative or social ingredients generally associated with traditional spiritual or religious involvement, the possibility of a different experience or expression must be considered. This research explored such a possibility through the context of people diagnosed with severe autism, who do not communicate by the use of oral speech. People with nonverbal autism are identified as being on the severe end of the autism spectrum. Typically, this group are thought to be severely intellectually impaired, however recent research is disproving this notion. A scoping literature review identified a gap in the literature concerning the personal perspectives of people with disabilities regarding their spirituality. Furthermore, in regards to people with nonverbal autism, the review identified that there was no academic literature on the topic. More so however, there seemed to be little research pertaining to people with severe autism from any perspective, particularly their own. As such, this study was intentionally designed to honour the silenced voices of this group by working inclusively with them in the research process. Specific strategies were implemented into the design of the study, which addressed particular practical, methodological and ethical challenges that present as barriers to working inclusively with those who carry this diagnosis. By accessing the flexibility offered by a bricolage methodological approach, interview proved a successful method of sourcing information. Personal involvement from the researcher and the ability to work creatively with participants in using their iv preferred method of communication was vital to the success of the data collection process. Ethical concerns regarding the cognitive capacity of participants were respected, yet unfounded as interviews revealed a group of intelligent, creative and sensitive human beings. Analysis of the data realised rich and previously unexplored information about the spiritual experiences and expressions relevant to the autistic condition. People with nonverbal autism live a predominantly ‘silent’ existence, with little opportunity to participate in many of the typical expectations of society. It appears however, that this life circumstance could provide a lived context conducive to the inner reflection and listening associated with greater spiritual awareness. Data revealed a sophisticated and unique spirituality, rich in metaphoric expression. Participants reported a pronounced sensitivity to their surroundings, with an ability to sense and interpret energetic impressions from the environment and other people. Furthermore, extraordinary transcendent encounters such as celestial guidance in times of great difficulty were commonly reported. A deep sense of personal mission, life purpose and desire to contribute to society because of, rather than despite, their unique life context was also strongly represented. This study has demonstrated that with researcher flexibility, meaningful and inclusive research is not only possible, but greatly beneficial to better understanding the inner world of people with nonverbal autism. More importantly, it has revealed that an unusual life context devoid of formal religious influence does not necessarily negate the presence of a mature and well developed spiritual awareness. It may, in fact enhance such experiences. v vi DECLARATION This work has not previously been submitted for a degree or diploma in any university. To the best of my knowledge and belief, the thesis contains no material previously published or written by another person except where due reference is made in the thesis itself. (Signed) Karenne Hills Name of Student Karenne Hills vii TABLE OF CONTENTS KEYWORDS ................................................................................................................. iii ABSTRACT ................................................................................................................... iv DECLARATION .......................................................................................................... vii TABLE OF CONTENTS ............................................................................................ viii LIST OF TABLES ......................................................................................................... xi LIST OF FIGURES ...................................................................................................... xii STATEMENT OF ASSISTANCE ............................................................................. xiii ACKNOWLEDGEMENT OF PUBLICATIONS AND CONFERENCE PRESENTATIONS ..................................................................................................... xiv Publications .............................................................................................................. xiv Conference Presentations ........................................................................................ xvi ALL PAPERS INCLUDED ARE CO-AUTHORED ............................................. xviii ACKNOWLEDGMENTS ........................................................................................... xxi PROLOGUE ................................................................................................................. 24 CHAPTER 1: INTRODUCTION ............................................................................... 31 Background to Research Project ............................................................................. 31 Nonverbal Autism ..................................................................................................... 31 Research Aims ........................................................................................................... 33 Thesis Organisation .................................................................................................. 33 Statement of Contribution to Co-authored Published Paper Included in Chapter 2 ................................................................................................................... 41 viii CHAPTER 2: EXPLORING SPIRITUALITY ......................................................... 42 Chapter 2: Article 1 .................................................................................................. 46 Statement of Contribution to Co-authored Published Paper Included in Chapter 3 ................................................................................................................... 73 CHAPTER 3: A SCOPING LITERATURE REVIEW ............................................ 74 Chapter 3: Article 2 .................................................................................................. 76 Statement of Contribution to Co-authored Paper Submitted for Publication Included in Chapter 4 – Article 3 .......................................................................... 103 Statement of Contribution to Co-authored Published Paper Included in Chapter 4 – Article 4 .............................................................................................. 104 CHAPTER 4: A METHODOLOGICAL PROCESS .............................................. 105 Chapter 4: Article 3 ................................................................................................ 107 Chapter 4: Article 4 ................................................................................................ 146 Statement of Contribution to Co-authored Paper Submitted for Publication Included in Chapter 5 ............................................................................................. 159 CHAPTER 5: WHAT HAS BEEN REVEALED .................................................... 160 Chapter 5: Article 5 ................................................................................................ 163 Statement of Contribution to Co-authored Paper Submitted for Publication Included in Chapter 6 ............................................................................................. 201 CHAPTER 6: A REFLECTION ON SILENCE ..................................................... 202 Chapter 6: Article 6 ................................................................................................ 203 CHAPTER 7: CONCLUSION .................................................................................