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ABSTRACT Title of Thesis: ACTIVE ENGAGEMENT: DEVELOPMENT

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ABSTRACT Title of Thesis: ACTIVE ENGAGEMENT: DEVELOPMENT ABSTRACT Title of thesis: ACTIVE ENGAGEMENT : DEVELOPMENT OF COOKING SKILLS FOR YOUNG ADULTS WITH AUTISM Janice Bailey-Goldschmidt, MS 2015 Thesis directed by: Hee-Jung Song, Ph.D. Department of Nutrition and Food Science Autism is a broadly defined disorder of communication and social development of neurobiological origin. While adults with autism are generally invisible in the national public health surveys, increased rates of overweight and obesity among this population are apparent and few nutrition programs have been developed and evaluated for this at- risk population. The objective of the research was to test the feasibility of a community- based nutritional intervention for young adults (18– 25 years of age) with autism founded on the premise of teaching introductory cooking skills. It was hypothesized that, in doing so, it would improve their variety of diet, and enhance fruit and vegetable consumption. This nutrition intervention program was guided by Hodge et al.’s conceptual framework for developing life skills and is focused on four motivational climates that contribute to autonomy (individual production of salads), self-efficacy (competence in salad preparation skills), social-relatedness (participation in the class), and preference (consumption of the product). In sum, over the course of 25 weeks, a group of individuals were brought together weekly in a social setting and taught the necessary skills to construct individualized salads. Qualitative data was collected in the form of an ethnography, as well as one case study demonstrating individual progression through the curriculum and the changes that occur amidst the four motivational climates. An in-depth interview with parents also provided background on eating disorders and the developmental role of food for these young adults. Active Engagement was found to be a feasible program for involving young adults with autism in their food preparation process, contributing to an improvement in their variety of diet, and promotion of fruit and vegetable consumption. ACTIVE ENGAGEMENT : ENHANCING FRUIT AND VEGETABLE CONSUMPTION FOR INDIVIDUALS WITH AUTISM by Janice Bailey-Goldschmidt Thesis submitted to the Faculty of the Graduate School of the University of Maryland, College Park, in partial fulfillment of the requirements for the degree of Masters of Science 2015 Advisory Committee: Hee-Jung Song, Ph.D., Chair Department of Nutrition and Food Science Mira Mehta, Ph.D. Department of Nutrition and Food Science Sherril Moon, Ph.D. Department of Counseling, Higher Education and Special Education ©Copyright by Janice Bailey-Goldschmidt 2015 DEDICATION Always and everywhere, for Conrad who gave me the inspiration, and without whom there would be nothing. ii ACKNOWLEDGEMENTS This thesis owes much to the generous help and guidance of many people. Particular thanks to Dr. Mira Mehta who first met with me to discuss admittance to the Nutrition and Food Science program and for encouraging me to move forward. Likewise, for Dr. Sherril Moon who agreed to serve on my thesis committee and offered the much needed autism perspective. For the entire faculty of the Department of Nutrition and Food Science at the University of Maryland-College Park who provided me with very generous financial support throughout my studies. To the staff members of the NFSC department for their guidance, assistance and friendship; it was most appreciated. I am also grateful to Community Support Services who hosted and financed my program, Active Engagement . In particular I express my gratitude to Susan Ingram, Executive Director who green-lighted my project and to Katie Raymond, Director of Therapeutic and Individual Services, who never once questioned my budget. I am so grateful to have had the opportunity to work with your wonderful clients. To all of the wonderful individuals who passed through my Active Engagement sessions, many thanks for teaching me another way to see the world. And, lastly, special mention must be made to Dr. Hee-Jung Song, Chair of my thesis committee, who guided me through the entire process. Dr. Song’s unending generosity of time, in the face of her many responsibilities and busy schedule, will always be remembered. Dr. Song, looking back, I see how you opened so many doors for me and made my program possible. iii Table of Contents LIST OF TABLES ....................................................................................................... VIII LIST OF FIGURES ........................................................................................................ IX CHAPTER 1: INTRODUCTION AND PROBLEM STATEMENT ............................1 1.1: INTRODUCTION ..............................................................................................................1 CHAPTER 2: BACKGROUND AND LITERATURE REVIEW ................................4 2.1: AUTISM : DEFINITION , DIAGNOSIS , COMORBIDITY ........................................................4 2.2: PREVALENCE .................................................................................................................7 2.3: NUTRITIONAL STATUS OF THE AUTISM POPULATION ....................................................9 2.4: EATING PATTERNS AND FOOD PREFERENCES ..............................................................13 2.4.1: EATING PATHOLOGIES IN THE AUTISM POPULATION .......................................14 2.4.2: THE MANIFESTATION OF EATING DISORDERS ON NUTRITIONAL STATUS ........15 2.4.3: TOOLS UTILIZED TO ASSESS EATING PROBLEMS ...............................................18 2.5: THE TRANSITION INTO ADULTHOOD ON THE SPECTRUM ..............................................19 2.6: NUTRITIONAL INTERVENTION IN THE AUTISM POPULATION ........................................20 CHAPTER 3: RESEARCH OBJECTIVES, AIMS AND HYPOTHESES ................28 3.1: AIMS AND HYPOTHESES ..............................................................................................30 CHAPTER 4: METHODOLOGY .................................................................................31 4.1: STUDY SETTING /S AMPLE SELECTION : .........................................................................31 4.1.1: INCLUSION CRITERIA .......................................................................................31 4.1.2: EXCLUSION CRITERIA .....................................................................................32 4.2: SAMPLE SIZE ...............................................................................................................32 4.3: PROTECTION OF HUMAN SUBJECTS .............................................................................33 4.4: EVIDENCE BASED PRACTICES IN AUTISM ....................................................................35 4.5: ETHNOGRAPHY ............................................................................................................36 4.5.1: ETHNOGRAPHIC METHODS IN HEALTHCARE AND NUTRITION .........................38 4.6: CASE STUDIES , INTERVIEWS , FIELD NOTES , DEMOGRAPHIC INFORMATION ................40 CHAPTER 5: APPROACHES AND FRAMEWORK ................................................42 5.1 : THE CONCEPTUAL FRAMEWORK : ACTIVE ENGAGEMENT ...........................................42 5.2: INTERVENTION PROGRAM (C LASS PROCESS ) ..............................................................46 5.2.1: THE ACTIVE ENGAGEMENT TOOLKIT .............................................................51 5.3: INTERVENTION DURATION ...........................................................................................54 5.4: FUTURE APPLICABILITY OF PROGRAM ........................................................................55 5.5: EXPANDING THE ACTIVE ENGAGEMENT PROGRAM .....................................................56 CHAPTER 6: DATA ANALYSIS .................................................................................59 iv 6.1: QUALITATIVE ANALYSIS AND AUTISM ........................................................................59 6.2: DATA ANALYSIS STRATEGIES .....................................................................................60 6.3: DATA ORGANIZATION .................................................................................................62 6.4: REFLEXIVITY , BIAS CONTROL AND VALIDITY .............................................................63 CHAPTER 7: THE OVERALL TRAJECTORY OF ACTIVE ENGAGEMENT ....65 7.1: IMPLEMENTING ACTIVE ENGAGEMENT : AN ETHNOGRAPHY OF THE COURSE PROGRESSION ...........................................................................................................65 7.2: PARTICIPANT OBSERVATION .......................................................................................67 7.3: METHODOLOGY ..........................................................................................................69 7.4: METHODS OF ANALYSIS ..............................................................................................70 7.5: CLASS PROCEDURES ....................................................................................................73 7.6: PARTICIPANT ’S ROLE ..................................................................................................74 7.8: RANGE OF BEHAVIORS .................................................................................................81 7.8.1: CREATING INDIVIDUALLY TAILORED SALADS ..................................................82 7.8.2: CHANGE THE TEXTURE , CHANGE THE TASTE ..................................................87
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