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The Use of Complementary and Alternative Medicine by Children and Adolescents with Autistic Spectrum Disorders

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The Use of Complementary and Alternative Medicine by Children and Adolescents with Autistic Spectrum Disorders University of Calgary PRISM: University of Calgary's Digital Repository Graduate Studies Legacy Theses 2005 The use of complementary and alternative medicine by children and adolescents with autistic spectrum disorders Gibbard, William Benton Gibbard, W. B. (2005). The use of complementary and alternative medicine by children and adolescents with autistic spectrum disorders (Unpublished master's thesis). University of Calgary, Calgary, AB. doi:10.11575/PRISM/14978 http://hdl.handle.net/1880/44821 master thesis University of Calgary graduate students retain copyright ownership and moral rights for their thesis. You may use this material in any way that is permitted by the Copyright Act or through licensing that has been assigned to the document. For uses that are not allowable under copyright legislation or licensing, you are required to seek permission. Downloaded from PRISM: https://prism.ucalgary.ca UNIVERSITY OF CALGARY The Use of Complementary and Alternative Medicine by Children and Adolescents with Autistic Spectrum Disorders by William Benton Gibbard A THESIS SUBMITTED TO THE FACULTY OF GRADUATE STUDIES IN PARTIAL FULFILMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE DEPARTMENT OF COMMUNITY HEALTH SCIENCES CALGARY, ALBERTA JULY, 2005 © William Benton Gibbard 2005 UNIVERSITY OF CALGARY FACULTY OF GRADUATE STUDIES The undersigned certify that they have read, and recommend to the Faculty of Graduate Studies for acceptance, a thesis entitled “The Use of Complementary and Alternative Medicine by Children and Adolescents with Autistic Spectrum Disorders” submitted by William Benton Gibbard in partial fulfilment of the requirements for the degree of Masters of Science. ________________________________________________ Supervisor, Marja Verhoef, Ph.D., Department of Community Health Sciences ________________________________________________ Margaret Clarke, M.D., FRCPC, Department of Pediatrics ________________________________________________ Bonnie Kaplan, Ph.D., Departments of Pediatrics and Community Health Sciences ________________________________________________ Elaine McKiel, Ph.D., Faculty of Nursing July 27, 2005 ii Abstract Background: Little is known about the use of complementary and alternative medicine (CAM) in children and adolescents with autistic spectrum disorders (ASDs) in Canada. Purpose: To describe CAM use in children and adolescents with ASDs in southern Alberta. Methods: A cross-sectional survey of parents. Results: The response rate was 50.3% (176/350). The majority of children were male (83.5%), and diagnosed with classic autism (52.8%). The mean age was 8.9 years. The majority of children (93.8%) had used CAM, most commonly vitamins and minerals (63.1%), mind-body therapies (51.7%), and dietary-nutritional therapies (45.5%). The mean number of types of CAM used was 9.6. The main reason parents used CAM was to improve autistic symptoms in their children. The mean amount spent on CAM was almost $3,000. Most physicians were felt by parents to know about their use of CAM, but the majority of parents felt that they volunteered this information. Roughly one third of both family physicians and pediatricians were perceived to be encouraging of CAM use. Conclusion: The use of CAM in children and adolescents with ASDs is very common, and highlights the need for further research with respect to efficacy, side effects and health policy for these therapies. iii Acknowledgements I would like to acknowledge contributions from the following people and organizations which made this project possible. First, I would like to thank my supervisor, Dr. Marja Verhoef, for her insight, guidance and support throughout this process. I would also like to thank the members of my supervisory committee Dr. Margaret Clarke and Dr. Bonnie Kaplan whose interest, expertise and encouragement were invaluable. I am grateful to Matthew Hicks who provided advice, support, and encouragement throughout this project. This research would not have been possible without the support of a number of outstanding organizations who support children and adolescents with autistic spectrum disorders and their families. These organizations include Autism Calgary Association, Renfrew Educational Services, Janus Academy, Leaps & Bounds, Kolaczek Consulting Services, the Society for Treatment of Autism, and Providence Children’s Centre. Finally, I would like to thank my family - Marilyn, Katherine, and Evan - whose ongoing support and understanding helped me persevere through this endeavour. iv Dedication To Marilyn, Katherine and Evan v TABLE OF CONTENTS Approval page..................................................................................................................... ii Abstract.............................................................................................................................. iii Acknowledgements............................................................................................................ iv Dedication............................................................................................................................v Table of Contents...............................................................................................................vi List of Tables ..................................................................................................................... ix List of Figures.................................................................................................................... xi CHAPTER ONE: INTRODUCTION..................................................................................1 CHAPTER TWO: BACKGROUND...................................................................................3 2.1 Autistic Spectrum Disorders (ASDs).................................................................3 2.1.1 Definition of ASDs ................................................................................3 2.1.2 Epidemiology of ASDs..........................................................................4 2.1.3 Genetic and Medical Conditions Associated with ASDs ......................6 2.1.4 Conventional Therapy Use for ASDs ....................................................7 2.2 Complementary and Alternative Medicine (CAM) .........................................11 2.2.1 Definition of CAM...............................................................................11 2.2.2 Reasons Why Patients Use CAM ........................................................12 2.2.3 CAM Use by Children and Adolescents..............................................13 2.3 CAM Use for Children and Adolescents with ASDs.......................................15 2.3.1 Prevalence of CAM Use for Children and Adolescents with ASDs............................................................................................16 2.3.2 Types of CAM Used for Children and Adolescents with Autistic Spectrum Disorders................................................................20 2.4 Parent Communication with Physicians Regarding the Use of CAM .............22 2.5 Study Rationale................................................................................................23 2.6 Study Purpose ..................................................................................................24 2.7 Study Objectives ..............................................................................................24 CHAPTER THREE: METHODS......................................................................................26 3.1 Design Type.....................................................................................................26 3.2 Study Population..............................................................................................26 3.3 Data Collection Instrument..............................................................................28 3.4 Data Collection Procedure ...............................................................................30 3.5 Data Analysis...................................................................................................31 3.6 Ethical Considerations .....................................................................................32 CHAPTER FOUR: RESULTS ..........................................................................................35 4.1 Response Rate..................................................................................................35 4.2 Demographic Characteristics...........................................................................36 4.2.1 Demographic Characteristics of Parents Completing the Survey........36 4.2.2 Demographic Characteristics of Children and Adolescents ................37 vi 4.3 ASD Diagnosis, Medical Factors and Associated Genetic Conditions ...........37 4.4 Use of Conventional Medicine ........................................................................38 4.4.1 Use of Conventional Medical Practitioners .........................................39 4.4.2 Use of Conventional Treatments for ASDs .........................................40 4.4.3 Use of Conventional Medications for ASDs .......................................42 4.5 Use of CAM.....................................................................................................45 4.5.1 Use of Complementary and Alternative Practitioners .........................46 4.5.2 Use of Complementary and Alternative Therapies..............................46 4.6 Reasons for Use and Non-Use of CAM...........................................................57
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