Consortium on the Management of Disorders of Sex …

1 Copyright 2006 Intersex Society of North AmericaFunded by The California Endowment and Arcus FoundationConsortium on the Management of Disorders of Sex DevelopmentHHAANNDDBBOOOOKKforPPAARREENN TTSS Consortium on the Management of Disorders of Sex DevelopmentCopyright 2006 Intersex Society of North AmericaFunded by The California Endowment and Arcus FoundationHHAANNDDBBOOOOKKforPPAARREENNT TSSH andbookfor ParentsConsortium on the Management of Disorders of Sex DevelopmentPublished September 18, 2006 First EditionCopyright 2006 Intersex Society of North AmericaISBN: 0-9773201-0-3 Published by Intersex Society of North America (a 501(c)3 tax-exempt corporation)979 Golf Course Drive #282 Rohnert Park CA 94928 Website: handbook is the result of an extraordinary collaboration among parents of children with Disorders of sex development (DSDs), adults with DSDs, clinicians who care for people with DSDs, and other patient advocates.

2 Christine Feick andSallie Foley wrote the original draft of this document, including much of the material contained in Chapters One throughThree. Alice Dreger then invited review and contributions from others and edited the handbook, adding additional materialwith help from collaborators. We are truly grateful for the assistance and support that has been provided to us in this work,and we hope that readers will use the associated website ( ) to give us feedback about it. We hope torefine and expand this document so that it becomes as supportive as such a book can are grateful for the participation of David Cameron, Peter Trinkl, and Esther Morris Leidolf in this project. However,they would like to make it known that they do not support the term Disorders of Sex development .

3 We would like to thank Yvonne Day ( ) for design assistance, Chris Dreger ( ) forillustration assistance, and Bob Stayton ( ) for technology assistance with document has been made possible by generous grants from The California Endowment ( ) and theArcus Foundation ( ) provided to the Intersex Society of North America ( ).Web-browseable and downloadable versions (both with clickable links) of Clinical Guidelines for the Management of Disordersof Sex development in Childhood and Handbook for Parents are available at no cost from L. Aspinall, MSW, LICSWC raniofacial Center, Seattle Children s Hospital;University of Washington School of SocialWork, Seattle, WAArlene B. Baratz, MDMedical Advisor, Androgen InsensitivitySyndrome Support Group, Pittsburgh, PAMax & Tamara BeckAtlanta, GAWilliam Byne, MDPsychiatry, Mount Sinai Medical Center, NewYork, NYDavid CameronIntersex Society of North America, SanFrancisco, CAAnita J.

4 Catlin, DSNc, FNP, FAANN ursing and Ethics, Sonoma State University,Sonoma, CACheryl ChaseFounder and Executive Director, Intersex Societyof North America, Rohnert Park, CAKimberly Chu, LCSW, DCSWD epartment of Child & Adolescent Psychiatry,Mount Sinai Medical Center, New York, NYHoward DevoreSan Francisco, CAAlice Dreger, (Project Coordinator andEditor)Program in Medical Humanities and Bioethics,Feinberg School of Medicine, NorthwesternUniversity, Chicago, ILChristine Feick, MSWAnn Arbor, MISallie Foley, LMSWC ertified Sex Therapist, AASECT; Dept. SocialWork/Sexual Health, University of MichiganHealth Systems, Ann Arbor, MIJoel Frader, MD, MAGeneral Academic Pediatrics, Children sMemorial Hospital; Dept. Pediatrics andProgram in Medical Humanities & Bioethics,Feinberg School of Medicine, NorthwesternUniversity, Chicago, ILJane GotoBoard of Directors, Intersex Society of NorthAmerica; Board of Directors, AndrogenInsensitivity Syndrome Support Group, Seattle,WAMichael GrantLansing, MIJanet GreenCo-Founder, Bodies Like Ours; Board ofDirectors, CARES Foundation; Board ofOverseers, Beth Israel Hospital; Board ofTrustees, Continuum Healthcare, New York,NYPhilip A.

5 Gruppuso, MDAssociate Dean of Medical Education, BrownUniversity; Pediatric Endocrinology, RhodeIsland Hospital, Providence, RIWilliam G. Hanley, BPSM emphis, TNiiiDebora Rode HartmanBoard of Directors, Intersex Society of NorthAmerica, Swedesboro, NJGinny Hayes, CMAA ndrogen Insensitivity Syndrome SupportGroup, Hampton, VAApril Herndon, PhDIntersex Society of North America; GustavusAdolphus College, St. Peter, MNThea HillmanOakland, CAColleen KiernanIntersex Society of North America, Chicago, ILDixie Korlutis, RNCrouse Hospital, Syracuse, NYEsther Morris LeidolfFounder and President, MRKH Organization;The Fenway Institute, Fenway CommunityHealth, Boston, MAAna M. LippertPeoria, ILAngela Moreno LippertChair of the Board, Intersex Society of NorthAmerica; Androgen Insensitivity SyndromeSupport Group, Coupeville, WAIain Morland, MA, MPhil, PhDCardiff, UKLynnell Stephani LongChicago, ILBev Mill, RTR (retired)Androgen Insensitivity Syndrome SupportGroups of Western Canada and Australia,Nelson, BC, CanadaCharmian A.

6 Quigley, MBBSS enior Clinical Research Physician, LillyResearch Laboratories, Indianapolis, INWilliam G. Reiner, MDDept. Urology/Sect. Pediatric Urology, Child & Adolescent Psychiatry,University of Oklahoma Health Sciences Center,Oklahoma City, OKPatricia RobertsLos Angeles, CAAron C. Sousa, MDGeneral Internal Medicine and Associate Deanfor Academic Affairs, College of HumanMedicine, Michigan State University, EastLansing, MIHerberta Smith, RN, PNP (retired)Kissimmee, FLCollin StollPortland, ORCindy StoneBloomington, INPeter TrinklBerkeley, CAEric Vilain, MD, PhDPediatrics/Urology/Human Genetics, DavidGeffen School of Medicine at UCLA, LosAngeles, CAMichael WalkerFounder, Hypospadias & Epispadias Association,Point Reyes, CA and Auckland, New ZealandRoz WeissStamford, CTivNina Williams, PsyDDeptartment of Psychiatry, Robert WoodJohnson Medical School.

7 Institute ofPsychotherapy and Psychoanalysis of New Jersey,Highland Park, NJBruce Wilson, MDPediatric Endocrinology, DeVos Children sHospital, Grand Rapids, MIvContentsWelcome to Are Not Alone!..3 What Are DSDs?..3 What Causes DSDs?..4 Acceptance Takes About Shame, to Try to Get Beyond It ..6 Helping Yourself to Help Your , Honesty= Messages of This Child s development , and How to Talk with Your the Language Used Here ..13 Key Background 12-36 3-5 Years (Pre-Schoolers)..19 Ages 6-11 (11-18)..32 Your Life Messages of This to Talk with to Tell Your Friends and Family in Your Newborn s Gender Assignment is to Tell People Who May Think DSDs are on Interacting with Teachers and Daycare with Your Child s Medical Care Messages of This to Common Disorders of Sex development (DSDs).

8 68 How Genital development to Do and Things to for a Medical and from Fellow Parents and from Adults with to This from Fellow and Thoughts from Adults with Resources (Where to Learn More) .. Groups and Diagnosis-Specific a Child Devoted to DSD and Television and Magazine Education for Your to (Explanation of Terms).. 1 Welcome to ParentsIf you ve just found out your child has some kind of disorder of sex development (called a DSD forshort), you may be feeling confused and stressed. Like other parents in this situation, you may havethese kinds of questions going through your mind: Why me? Why my child? Did I do something wrong? What if I can t love my child? Are the doctors telling me everything? Is there more to come? What am I going to tell my family and friends?

9 Is there a way I can make this all go away?Jane Goto1 These kinds of questions are common to parents in this situation. We hope that this handbook willhelp you begin to answer these questions and that it will help you feel stronger, more certain, lessconfused, and less stressed. We hope it will assure you that, with your loving support, your child cangrow up to be well, happy, loved, and handbook does not include a large amount of medical information about your child s specificcondition. That is because there are many conditions that count as Disorders of sex development (DSDs),so it would be impossible for us to cover them all. Instead, this book is meant to give you some basicinformation about sex and gender development . It is also meant to give you emotional support andideas about how to cope with your feelings and your day-to-day life.

10 It gives ideas about how to helpyour child adapt and thrive, and it gives you advice about how to talk with your child (and others, too)as he or she grows up. The central purpose of this handbook is to help you as you travel on the journeyof life with your book is set up so that you can read it from beginning to end, but it also allows you to skip fromchapter to chapter if you like. We do suggest you start by reading all of Chapter 1 Welcome toParents [page 1] where we discuss the main issues of having a child with a DSD. Chapter 2 YourChild s development , and How to Talk with Your Child [page 13] walks you through the developmentof your child, including how to talk with your child, at various ages, about his or her DSD. Chapter 3 How to Talk with Others [page 39] gives you practical advice about how to talk with others about yourchild s DSD, as you will sometimes need to.