A HANDBOOK FOR AND BY AUTISTIC PEOPLE relationships & sexuality Edited by Elesia Ashkenazy & Melanie Yergeau A project produced by Autism NOW, a national initiative of The Arc, and the Autistic Self Advocacy Network Copyright 2013 Autistic Self Advocacy Network and individual authors Requests for permission to use materials from this project in new publications should be directed to the Autistic Self Advocacy Network: Autistic Self Advocacy Network PO Box 66122 Washington, DC 20035 http://autisticadvocacy.org DESIGN Typeset in Arial Book and cover design: Melanie Yergeau | 2 Acknowledgments This book is but a first. In the months we spent planning and editing and poring over pages, we realized, all too quickly, how little has been said about autism and sexuality. And again, all too quickly, we recognized that any anthology on autistic relationships would represent but a sampling of our community’s diversity. And so, this book is a first. We are proud to say that it will not be the last. A truly collective effort, Relationships & Sexuality represents the skills, wisdom, and labor of many. First, we wish to thank our project’s sponsors, the Autistic Self Advocacy Network, The Arc, and the Autism NOW Center. Throughout the project, members from each organization lent time and advice. In particular, we’d like to thank Tonia Ferguson, Melody Latimer, and Ari Ne’eman for their continued expertise. We also thank Melanie Yergeau, who served as our typesetter, collator, and copy editor. Bethany Stevens, our inimitable reviewer, guided us through early drafts. Her always incisive comments shaped the direction and scope of this project, for which we cannot thank her enough. Additionally, Deb Kuzawa and Margaret Price counseled us through some of the project’s volleys, and we know this book is sharper and more storied because of their efforts. And, finally, our contributors: It’s no understatement to assert that this project would not exist without you. | iii This manuscript, written by and for adults with autism, discusses topics relating to sexuality in a frank and open manner. Although these topics may be uncomfortable and even offensive to some people, it is important to present this information as a continued effort to empower individuals with autism and other developmental disabilities. Any views or opinions presented in the following articles and essays are solely those of the authors and do not necessarily represent those of the Autism NOW Center. Additionally, although Autism NOW respects the authors’ use of Identity-Based Language, as the National Resource and Information Center, we promote and encourage the use of People First Language. This report/document/etc. was supported in part by a cooperative agreement from the Administration on Intellectual and Developmental Disabilities, Administration for Community Living, U.S. Department of Health and Human Services. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration on Intellectual and Developmental Disabilities policy. | iv Foreword by Elesia Ashkenazy The Autistic Self Advocacy Network (ASAN) is excited to have collaborated with Autism NOW on this cutting-edge project about relationships, sexuality, and the Autistic community. The hallmark of our organization is to provide support and services to Autistic individuals while working to educate communities and improve public perceptions of autism. We strive to open doors for people to live fulfilling and productive lives. There should be no limitations on the possibilities for Autistic individuals to achieve their personal goals and to attain the dreams they have for themselves. Nothing about us without us! This anthology aims to take readers on a thought-provoking journey about relationships and sexuality through the eyes of Autistic self- advocates. It is tempered with advice, rich perspectives, and stories that are woven through the personal experiences of our contributors. In the following pages, you’ll discover information about romance, marriage, expectations, consent, myths, and sexual abuse. Other topics include cultural fascination, gender transition, asexuality, and other similar subjects. We have high hopes that those who encounter this resource will find that the information and advocacy ideas presented are helpful in advancing their own life experiences. It is an honor and a privilege to participate in providing firsthand information to the community straight from the source: Autistic self-advocates. We wish we could sit down and have a chat with | v each of our readers over a cup of coffee, tea—or whatever it is that is fancied—so that we could exchange further ideas and answer questions. Though we cannot teleport, please know that we appreciate your support and that we encourage you to stop by at any time: http://autisticadvocacy.org/ | vi Contents Acknowledgments ....................................................................................iii Foreword ................................................................................................... v Part 1: Identity and becoming 1. When We Met, I Wasn’t Autistic Yet ................................................ 2 Andee Joyce 2. Negotiating Identities ....................................................................... 8 Caroline Narby Part 2: Expectations, communication, and commitment 3. Putting Words to Expectations ....................................................... 13 Meg Evans 4. Ready to Move in Together? A 10-Step Plan for Autistic Couples ............................................... 17 Lindsey A. Nebeker 5. Complex and Atypical Relationships .............................................. 27 Lydia Brown 6. On Being Understood .................................................................... 37 Meg Evans Part 3: Signals: Bodies and being 7. Autism and Orgasm ....................................................................... 43 Lindsey A. Nebeker | vii 8. Obtaining and Recognizing Consent ............................................. 53 Leah Jane Grantham 9. The Scientific Analysis of a Romantic Scene ................................. 57 Lindsey A. Nebeker Part 4: Gender and sexuality 10. Helping a Partner Through a Gender Transition ............................ 63 Leah Jane Grantham 11. Asexuality ...................................................................................... 70 Elizabeth Boresow 12. On Being Autistic and a Not-Quite-Asexual Genderqueer Person ........................................................................................... 83 Tracy Garza 13. Cultural Fascination ....................................................................... 87 Adrienne Smith Part 5: Debunking myths and stereotypes 14. I Am Married Too ........................................................................... 99 Michael Higginbotham 15. Our Voices: What Are the Greatest Myths of Autism and Sexuality? .............. 104 Lindsey A. Nebeker Part 6: Abuse 16. We Are No Longer Silent ............................................................. 110 Lindsey A. Nebeker | viii 17. 10 Things I Wish I Had Known .................................................... 130 Robyn Steward 18. Fact Sheet on Sexual Abuse of People with Developmental Disabilities .......................................................... 142 Julia Bascom Appendix A: Glossary .......................................................................... 147 Contributors .......................................................................................... 152 Editors ................................................................................................... 156 | ix part 1 identity & becoming When We Met, I Wasn’t Autistic Yet by Andee Joyce When I first met Chris, my partner, seven years ago, through an ad I placed on OK Cupid, I was blown away by how easy it was. It might not have been love at first sight for the two of us, exactly—but synergy at first speech? That it was. It was like a couple of dogs meeting up in the dog park and stopping to sniff and wag their tails with delighted impunity— “Yep, I like this one. I couldn’t tell you why, but I do.” There was no angst whatsoever about did he like me, did I blow it, will I ever see him again; we just blended, like creaming Earth Balance spread into sugar. Yum. Trust me, nothing like this had ever happened to me. During my prior 41 years on this earth, I had—in addition to one spectacular mismatch of a marriage—dozens of fabulous relationships. Only they were all in my head. (To say I was the Queen of the Unrequited Crush since the age of 11 would be lowballing it; I could have taught a class on how to fantasize endlessly about someone who won’t ever ask you for a date, let alone look your way.) When a few of my old crushes did materialize, I turned out to be staggeringly wrong about my crush-object’s rightness for me. In fact, that’s partly what got me married to Brave Sir Mismatch in the first place. At age 33, I was starving for someone to think I was good enough, pretty enough, and nice enough to want forever. I ached, screamed, and cried for something a therapist very helpfully told me “doesn’t happen between men and women,” a concept that love, when it came at last, would be a permanent validation sticker to affix to my backside. | 2 I married Brave Sir Mismatch because I wanted to feel “normal.” Instead, I just wound up feeling