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Self-Reported Sexuality Among Women with and Without Autism Spectrum Disorder (ASD) Hillary Hurst Bush University of Massachusetts Boston

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Self-Reported Sexuality Among Women with and Without Autism Spectrum Disorder (ASD) Hillary Hurst Bush University of Massachusetts Boston University of Massachusetts Boston ScholarWorks at UMass Boston Graduate Doctoral Dissertations Doctoral Dissertations and Masters Theses 6-1-2016 Self-Reported Sexuality among Women with and without Autism Spectrum Disorder (ASD) Hillary Hurst Bush University of Massachusetts Boston Follow this and additional works at: http://scholarworks.umb.edu/doctoral_dissertations Part of the Clinical Psychology Commons Recommended Citation Bush, Hillary Hurst, "Self-Reported Sexuality among Women with and without Autism Spectrum Disorder (ASD)" (2016). Graduate Doctoral Dissertations. Paper 243. This Open Access Dissertation is brought to you for free and open access by the Doctoral Dissertations and Masters Theses at ScholarWorks at UMass Boston. It has been accepted for inclusion in Graduate Doctoral Dissertations by an authorized administrator of ScholarWorks at UMass Boston. For more information, please contact [email protected]. SELF-REPORTED SEXUALITY AMONG WOMEN WITH AND WITHOUT AUTISM SPECTRUM DISORDER (ASD) A Dissertation Presented by HILLARY HURST BUSH Submitted to the Office of Graduate Studies, University of Massachusetts Boston, in partial fulfillment of the requirements for the degree of DOCTOR OF PHILOSOPHY June 2016 Clinical Psychology Program © 2016 by Hillary Hurst Bush All rights reserved SELF-REPORTED SEXUALITY AMONG WOMEN WITH AND WITHOUT AUTISM SPECTRUM DISORDER (ASD) A Dissertation Presented by HILLARY HURST BUSH Approved as to style and content by: ________________________________________________ Abbey Eisenhower, Assistant Professor Chairperson of Committee ________________________________________________ Heidi Levitt, Professor Member ________________________________________________ Laurel Wainwright, Senior Lecturer Member ________________________________________________ Brian L. B. Willoughby, Staff Psychologist Massachusetts General Hospital _________________________________________ Alice S. Carter, Program Director Clinical Psychology Program _________________________________________ Jane Adams, Chairperson Psychology Department ABSTRACT SELF-REPORTED SEXUALITY AMONG WOMEN WITH AND WITHOUT AUTISM SPECTRUM DISORDER (ASD) June 2016 Hillary Hurst Bush, B.A., Wellesley College M.A., University of Massachusetts Boston Ph.D., University of Massachusetts Boston Directed by Assistant Professor Abbey Eisenhower Autism spectrum disorders (ASD) – characterized by deficits in social interaction and communication, and restricted and repetitive behaviors, interests, and activities – increasingly are being diagnosed in individuals of all ages. However, as children on the autism spectrum enter adolescence, self-report research on ASD and sexuality is currently limited to 14 empirical, peer-reviewed articles, misconceptions are prevalent, and professionals remain underequipped to support their sexuality needs. The goal of the current study was to expand the current knowledge base by exploring multiple aspects of sexuality (including relationship and family status, gender identity, sexual history, sexual orientation, sexual desire, sex education exposure, sexual behavior, sexual satisfaction, sexual victimization, and sexual awareness) and iv well-being (including symptoms of ASD, sensory sensitivity, depression, anxiety, and social anxiety) in a sample of 18-30 year old women with and without ASD. To capture a wide range of experiences, female-bodied individuals with more fluid gender identities (e.g., agender, genderqueer) and transfeminine women were invited to participate too. Overall, 248 individuals with ASD and 179 individuals without ASD (N = 427) self-reported on their experiences by completing a 20-minute online survey. Results showed a wide range of sexuality-related identities and experiences among women with ASD. Of note, a surprisingly high percentage of participants with ASD reported having a genderfluid identity, a sexual minority identity, and at least one lifetime incidence of sexual victimization. When compared to a non-ASD sample, participants on the autism spectrum reported higher levels of gender fluidity, sexual minority identity, and sexual victimization, and lower levels of romantic partnerships, sexual desire, sexual behavior, sex education exposure, and sexual awareness, including consciousness and monitoring; participants in both groups reported comparable levels of sexual satisfaction. Relations across sexuality-related variables, and between sexuality-related and non-sexuality-related variables, within the ASD and comparison groups also were assessed and many significant correlations were observed. The discussion focuses on how these findings expand the current knowledge base, and how they might inform the work of researchers and clinicians, and support the romantic partners, family members, and friends involved in the lives of young people with ASD. v ACKNOWLEDGEMENTS First and foremost, I would like to thank my advisor, Dr. Abbey Eisenhower, for her tremendous mentorship throughout my graduate career. Abbey, I feel very lucky to have been your student, and will always be grateful for your investment in me, and the many opportunities you have offered me. I also would like to thank my committee members, Dr. Heidi Levitt, Dr. Laurel Wainwright, and Dr. Brian Willoughby, for their keen insight, guidance, and encouragement as I explored a new field of study. Thanks are also due to Joan Liem and her research team, who afforded me my first opportunity to engage in psychological research, and also to the members of the Eisenhower, Carter, and Wainwright research teams, who patiently provided thoughtful and cogent feedback on the current study, throughout every stage of its development. I would like to thank everyone who contributed to the current study, including individuals who took the time to participate, who went out of their way to publicize the study, and who took the time to provide me with helpful feedback and advice. This project would not be possible without your sincere efforts. In particular, thanks are due to Eva Mendes of the Asperger/Autism Network (AANE). The current study was generously funded by the Society for the Psychological Study of Social Issues Grants-in-Aid Program, the Doctoral Dissertation Research Grant Program at UMass Boston, and the Department of Psychology at UMass Boston. With my whole heart, I would like to thank my husband, Devon, my mother, Louise, and my grandmother, Neska, for their unwavering love, support, and vi understanding throughout my years in graduate school. Finally, I would like to dedicate this work to the memory and spirit of my father, Peter, who passed away before I had the chance to realize and explore the interests reflected in this work. His enthusiastic pursuit of his interests and his brave willingness to forge a new path in the world are qualities that I seek to emulate. vii NOTE ON LANGUAGE There is currently a range in terminology that is used to describe autism and autism spectrum disorders. “Asperger,” “Aspie,” “Autistic,” “autism,” “autism spectrum,” “autism spectrum disorder,” “spectrum,” “typically developing,” and “neurotypical” are among the many terms I encountered while conducting this study. Terminology around autism is a complicated and political issue, and it becomes all the more challenging when researchers (who often do not have autism) use words and terms that are different from how individuals on the autism spectrum describe themselves and their experiences. In the absence of a definitive consensus, it was necessary to make difficult decisions in the preparation of this dissertation. In this dissertation, I have elected to use the term “autism spectrum disorder” (“ASD” for short) when describing participants on the autism spectrum. This language was selected to capture both individuals with an Autistic identity and those with an Asperger identity, and to reflect that participants may have one but not both of these identities. Also, “ASD” is consistent with the DSM5 and with the current conventions of clinical psychology. However, “ASD” may be inconsistent with how individuals on the autism spectrum, including participants in the current study, might describe themselves. I have chosen to use the term “comparison” when describing participants not on the autism spectrum. The decision not to use the terms “typically developing” or “neurotypical” to describe participants without ASD is partly due to the fact that other aspects of neurodevelopment, beyond ASD, were not assessed, and largely due to the vagueness of these terms. viii The language used to discuss autism continues to evolve. This research was conducted in a discrete moment of time, and the language used here, while thoughtfully chosen at the time, is likely to become outdated in the near future. ix TABLE OF CONTENTS ACKNOWLEDGMENTS ............................................................................. vi NOTE ON LANGUAGE ............................................................................... viii LIST OF TABLES ......................................................................................... xiv LIST OF FIGURES ....................................................................................... xvi CHAPTER Page 1. INTRODUCTION ......................................................................... 1 Sexual Identity Development Theory and Implications for . the ASD Population ......................................................... 3 Sexuality, ASD, and Young Adulthood ................................. 6 How Sexuality and ID Literature
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