Chronic Stress and Coping Among Families of High-Functioning Adolescent Girls with Autism Spectrum Disorder
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"Living Life in the Moment": Chronic Stress and Coping Among Families of High-Functioning Adolescent Girls with Autism Spectrum Disorder Author: Lisa Ellen Watson Persistent link: http://hdl.handle.net/2345/bc-ir:103562 This work is posted on eScholarship@BC, Boston College University Libraries. Boston College Electronic Thesis or Dissertation, 2014 Copyright is held by the author, with all rights reserved, unless otherwise noted. BOSTON COLLEGE Graduate School of Social Work “LIVING LIFE IN THE MOMENT”: CHRONIC STRESS AND COPING AMONG FAMILIES OF HIGH-FUNCTIONING ADOLESCENT GIRLS WITH AUTISM SPECTRUM DISORDER A dissertation by LISA E. WATSON, LICSW Submitted in partial fulfillment of the requirements for a degree of Doctor of Philosophy June 2014 © Copyright by LISA E. WATSON 2014 “LIVING LIFE IN THE MOMENT”: CHRONIC STRESS AND COPING AMONG FAMILIES OF HIGH-FUNCTIONING ADOLESCENT GIRLS WITH AUTISM SPECTRUM DISORDER A dissertation by LISA E. WATSON, LICSW Dissertation Co-Chairs: Dr. Ruth McRoy and Dr. Linnie Green Wright Abstract Autism spectrum disorder (ASD) prevalence rates have risen dramatically over the past decade and boys are five times more likely to be diagnosed than girls. Prior research on children with ASD includes samples that are overwhelmingly male, but does indicate that girls with high-functioning ASD may have distinct needs and profiles. This study begins to address this gap in the research through a qualitative study of eleven families with an adolescent daughter with high-functioning autism spectrum disorder. The family is the primary unit of analysis and the study focuses on the following: (a) families’ experience with the diagnostic process (b) families’ management of their daughter’s adjustment to adolescence, and(c) the impact of the ASD on family well- being. Family stress theory was the conceptual framework used to guide the study. Using grounded theory with a supplemental quantitative data strand, the study involved forty in-depth semi-structured interviews. Parents completed the Stress Index for Parents of Adolescents (SIPA) and a demographic questionnaire. Findings indicate that parenting a daughter with ASD could be categorized as a chronic stressor. The majority of parents endorsed clinically significant levels of stress on the SIPA. The mean age of ASD diagnosis was 8.7 years, well above the most recent (2014) Centers for Disease Control findings (6.3 years). Delayed and misdiagnosis for girls with ASD resulted in significant stress for families and reduced access to appropriate intervention. A shift in perception of the ASD from an acute to a chronic stressor allowed families to move toward acceptance and adaptation. The study findings support the need for a family centered model of assessment and intervention. Social workers in schools and in early intervention programs can play a critical role in providing education and support for families. DEDICATION This dissertation is dedicated to the parents who participated in this study for their generosity in sharing their stories and caring so deeply for their daughters i ACKNOWLEDGEMENTS Thank you to my partner, Kelly, for her endless support and tireless patience throughout this odyssey. This would never have happened without you. A very big hug for my children, Pyper and August, for their humor and understanding while “mommy works on her big paper”. I could not ask for a happier and more fulfilling home life; so key to getting me to the end of this process. Thank you to my parents, Don and Lynda, for all their support and inspiration. A heartfelt thank you to Dr. Ruth McRoy, my dissertation co-chair, for her genuine interest in this study, patience with my timeline, and critical support in this long journey. Thank you to Dr. Linnie Green Wright for her insight and tireless feedback on countless drafts. Thank you to Dr. Penny Hauser-Cram for sharing her expertise and enthusiasm for the study. A big thank you to Brenda Vitale, an amazing asset and resource within the doctoral program. Her organizational skills and ability to make things happen is truly impressive. ii TABLE OF CONTENTS Abstract .............................................................................................................................. vi DEDICATION ..................................................................................................................... i ACKNOWLEDGEMENTS ................................................................................................ ii TABLE OF CONTENTS ................................................................................................... iii LIST OF FIGURES ........................................................................................................... vi LIST OF TABLES ............................................................................................................ vii Chapter I. Introduction ........................................................................................................ 1 ASD Classifications, Prevalence Rates and Sex Ratios .................................................. 4 Study Rationale ................................................................................................................. 15 Study Aims ....................................................................................................................... 18 Chapter II: Literature Review ........................................................................................... 20 Introduction ................................................................................................................... 20 Diagnostic Sex Differences ........................................................................................... 22 Adolescent Functioning Among ASD Youth ............................................................... 26 Female adolescent development. .............................................................................. 26 Mental health. ........................................................................................................... 29 Public school experiences ......................................................................................... 30 Bullying. ................................................................................................................... 35 Family Stress and Coping ............................................................................................. 36 Diagnostic Process. ................................................................................................... 37 The parenting experience. ......................................................................................... 38 Conceptual Framework ................................................................................................. 46 Research Questions ....................................................................................................... 52 Chapter Summary ......................................................................................................... 55 Chapter III: Method .......................................................................................................... 56 Study Design ................................................................................................................. 56 Human Subjects Protection ........................................................................................... 58 Sampling Strategy and Recruitment ............................................................................. 59 Sample inclusion criteria. .......................................................................................... 62 Sample ........................................................................................................................... 62 Data Collection Procedures ........................................................................................... 64 Interview setting ........................................................................................................ 64 iii Interviews. ................................................................................................................. 65 Measures ....................................................................................................................... 66 Interview Protocol ..................................................................................................... 66 Demographic Questionnaire. .................................................................................... 68 Stress Index for Parents of Adolescents. ................................................................... 68 Written Documentation on the ASD Diagnosis. ....................................................... 69 Data Management ......................................................................................................... 70 Transcription. ............................................................................................................ 70 File Management ...................................................................................................... 70 Quantitative Data. ..................................................................................................... 71 Data Analysis ................................................................................................................ 72 Analytic Memoing .................................................................................................... 72 Coding Process.............................................................................................................