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ii DEDICATION  iii ACKNOWLEDGMENTS  iv LIST OF TABLES  viii LIST OF FIGURES  ix CHAPTER I: INTRODUCTION 2 Overview of Autism 2 Etiology of autism 3 Prevalence of autism 3 Healthcare utilization and costs associated with autism 4 Treatment of autism 5 Caregiver and Caregiving 7 Caregiver burden 7 Health-related quality of life 8 Caregiving Outcomes in Autism 11 Study Need 13 Bibliography 17 CHAPTER 2: A QUALITATIVE STUDY OF THE EXPERIENCES OF PRIMARY CAREGIVERS OF CHILDREN WITH AUTISM SPECTRUM DISORDER 23 Introduction 23 Methods25 Study design 25 Participants 26 Procedure 26 Data analysis 28 Results 30 Theme 1: Impact on caregiver health31 Theme 2: Impact on relationships 34 Theme 3: Objective burden 37

Burden of care and health -related quality of life among caregivers of children with autism spectrum disorder