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Understanding Circumscribed Interests in Individuals with Autism-Spectrum Disorders and How They Relate to Families

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Understanding Circumscribed Interests in Individuals with Autism-Spectrum Disorders and How They Relate to Families UNDERSTANDING CIRCUMSCRIBED INTERESTS IN INDIVIDUALS WITH AUTISM-SPECTRUM DISORDERS AND HOW THEY RELATE TO FAMILIES by David S.J. Gass A thesis submitted in partial fulfillment of the requirements for the degree of Master of Arts (MA) in Psychology The School of Graduate Studies Laurentian University Sudbury, Ontario, Canada © David S.J. Gass, 2013 THESIS DEFENCE COMMITTEE Laurentian Université/Université Laurentienne School of Graduate Studies/École des études supérieures Title of Thesis Titre de la thèse UNDERSTANDING CIRCUMSCRIBED INTERESTS IN INDIVIDUALS WITH AUTISM- SPECTRUM DISORDERS AND HOW THEY RELATE TO FAMILIES Name of Candidate Nom du candidat Gass, David S.J. Degree Diplôme Master of Arts Department/Program Date of Defence Département/Programme Psychology Date de la soutenance July 29, 2013 APPROVED/APPROUVÉ Thesis Examiners/Examinateurs de thèse: Dr. Shelley Watson (Supervisor/Directrice de thèse) Dr. Glenn Legault (Committee member/Membre du comité) Approved for the School of Graduate Studies Dr. Tom Managhan Approuvé pour l’École des études supérieures (Committee member/Membre du comité) Dr. David Lesbarrères M. David Lesbarrères Dr. James M. Bebko Director, School of Graduate Studies (External Examiner/Examinateur externe) Directeur, École des études supérieures ACCESSIBILITY CLAUSE AND PERMISSION TO USE I, David S.J. Gass, hereby grant to Laurentian University and/or its agents the non-exclusive license to archive and make accessible my thesis, dissertation, or project report in whole or in part in all forms of media, now or for the duration of my copyright ownership. I retain all other ownership rights to the copyright of the thesis, dissertation or project report. I also reserve the right to use in future works (such as articles or books) all or part of this thesis, dissertation, or project report. I further agree that permission for copying of this thesis in any manner, in whole or in part, for scholarly purposes may be granted by the professor or professors who supervised my thesis work or, in their absence, by the Head of the Department in which my thesis work was done. It is understood that any copying or publication or use of this thesis or parts thereof for financial gain shall not be allowed without my written permission. It is also understood that this copy is being made available in this form by the authority of the copyright owner solely for the purpose of private study and research and may not be copied or reproduced except as permitted by the copyright laws without written authority from the copyright owner. ii Abstract Autism-spectrum disorders (ASDs) are a group of neurodevelopmental disorders that are becoming increasingly more prevalent. A diagnostic criterion for autism is the presence of restricted, repetitive behaviours (RRBs), one of which is the intense fascinations for virtually any topic: circumscribed interests (CIs). CIs have the potential to be used for motivational purposes. This study employed semi-structured interviews using Interpretative Phenomenological Analysis (IPA) with individuals with ASDs and their parents. In total, 11 families participated in this study, comprising 33 individuals (16 parents and 17 individuals with ASDs). This study found five themes: He's Very Unique; They Don't Realize that Not Everyone Lives and Thinks the Same Thing All the Time; We Couldn't even Pronounce the Names of These Dinosaurs, and Jason was Telling Us; You Can't Change Them, You Can Only Love Them; and So I Can Do My Job at the Same Time and Observe the Weather at the Same Time. iii Acknowledgements The families who participated. This would not have been possible without your generous offers, gracious patience, and opening your lives. My thesis committee, including Dr. Shelley Watson, my thesis supervisor/adviser, Dr. Glenn Legault, and Dr. Tom Managhan. They have been incredibly patient for putting up with the editing process, and the extended time-frame of this thesis. My entire family, immediate and extended, for their love and support. More than anyone else, my parents went to great lengths to assist me; my grandparents – particularly the memory of my grandfather, who passed away during the construction of this thesis; my cousin, the first person with a developmental disability that I ever met. My godmother was also recently diagnosed with cancer – I am most thankful for the love and support both she and my godfather have given me. My friends have been quite patient, expressed interest in my work, and have even come to visit me. For additional assistance in constructing my thesis, I would also like to thank the following: Autism Coffee Chat, for giving me initial ideas and helping me connect to several families, Autism Ontario, for helping me find more participants when I was unable to do so, The Social Sciences and Humanities Research Council of Canada for funding the first year of my graduate school education, and subsequently the beginnings of this thesis, Dr. Michael Emond, head of Laurentian University's psychology department's Graduate Program. iv I also wish to thank the circumstances of my birth: in this age, as opposed to less enlightened times, where we as a species are moving towards liberty, respect for individuals, the abandonement of bigotry and ignorance, in a democracy, with somewhat decent economic circumstances, one not utterly ruled by the whims of despots and totalitarians, to a minute and insignificant spheroid, in an insignificant part of an insignificant solar system, in an insignificant corner of an insignificant galaxy, in an insignificant cluster of galaxies in an unfathomably grand reality. v Table of Contents Chapter 1: Introduction .......................................................................................................... 1 The Nature of ASDs ........................................................................................................... 2 Table 1: Initialisms for Key Terms ........................................................................................ 4 Autism and sleep............................................................................................................. 7 Socialization ..................................................................................................................... 10 Repetitive Behaviours ...................................................................................................... 11 Autism and Circumscribed Interests ................................................................................ 11 Families and Children with ASDs.................................................................................... 12 Repetitive Behaviours and Circumscribed Interests ........................................................ 18 Aspects seen as less positive......................................................................................... 21 Positive aspects of circumscribed interests .................................................................. 22 Purpose ............................................................................................................................ 24 Statement of Problem ....................................................................................................... 25 Rationale .......................................................................................................................... 26 Reflexivity ......................................................................................................................... 27 Chapter 2: Methods Section ................................................................................................ 33 Theoretical Underpinning ................................................................................................ 33 Methods ............................................................................................................................ 34 Participants ...................................................................................................................... 36 Table 2: Participants ........................................................................................................... 38 Families............................................................................................................................ 39 Ethical Considerations..................................................................................................... 42 Analysis of Transcripts – Interpretative Phenomenological Analysis ............................. 43 Chapter 3: Results ................................................................................................................ 45 Table 3: Theme Names and Descriptions ............................................................................ 47 “He's Very Unique” - Positive Aspects of CIs. ................................................................ 47 “They do every single thing together” - Using CIs to promote social interactions. ... 48 “Have you seen all the Star Trek: The Next Generation episodes?” - CIs as motivators. .................................................................................................................... 51 vi “They Don’t Realize that Not Everyone Lives and Thinks the Same Thing All the Time” - Negative Aspects of CIs. .................................................................................................. 53 “He'll stop people in the street and lift up their pants to look at their shoes” - Socially inappropriate actions
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