The T in LGBT: Last but not Lost (Transgender Teenagers) 20th Annual Family Practice Review and Reunion February 21, 2014 Lee Ann E. Conard, RPh, DO, MPH Division of Adolescent & Transition Medicine

Disclosures and Conflicts of Interest Dr. Conard has no relevant financial relationships to disclose or conflicts of interest to resolve.

Pre-Test Question #1 Transgender teens have higher rates of this than the general population? 1. Congenital Adrenal Hyperplasia 2. Irritable bowel syndrome 3. Personality disorders 4. Polycystic Ovary Syndrome 5. *Suicide attempts

Pre-Test Question #2 What is the most appropriate way to figure out someone’s gender? 1. Ask them if they are male or female. 2. Ask them if they are transgender. *Ask them if they are male, female, somewhere in between or not on the scale. Assume that they are male or female depending on how they are dressed. 5. It does not matter what their gender is.

Goals and Objectives Describe the assessment of a Trans* patient Determine a treatment plan for a Trans* patient Identify local resources for Trans* patients and their families The goals and objectives for today are to: Describe the assessment of a Trans* patient, including history-taking, affirming clinical interactions, and provision of a safe environment. Determine a mental health treatment plan for a Trans* patient including potential treatment goals and interaction with the transgender treatment team. Identify local resources for Trans* patients and their families

Although LBG (sexuality) and T (gender) are 2 separate entities, they tend to be lumped together, which makes sense to some degree for political lobbying. Although both groups have some similar health risks, Trans* people are often lost in and to the health care system.

As we see more and more children, adolescents and young adults identifying as trans*, we need a road map to keep them from getting lost, and to help us care for them. Road Map

Trans* 101: Gender & Sexual Identity http://itspronouncedmetrosexual.com/ This is the genderbread person, who represents the differences between gender and sexual identity. Most of us tend to ask about attractions: who are you attracted to? Males, females, both, neither, all, or are you unsure? Most of us tend to know what sex or gender is – at birth, when the OB says, “It’s a boy!” or, “It’s a girl!”. Gender identity is discussed less commonly. This is a sense of being, male, female, somewhere in between, or neither. Gender expression is how a person acts, dresses, speaks and behaves to show their gender.

Trans* 101: Terminology Trans* Transgender Gender Nonconforming Transsexual MTF FTM To make sure we are on the same page in our discussion, I would like review some terminology with you. A lot of people ask me what the asterisk stands for. Trans* is an umbrella term that refers to all the identities in the gender identity spectrum. It includes terms such as transgender, gender variant, gender creative, gender fluid, gender expansive, gender queer, two-spirit, and gender non-conforming. Transgender is when one’s gender identity is not the same as the assigned or natal gender. For example, a person who was born a male, with male genitalia, but who feels that they are really female, or somewhere in between male and female. Gender non-conforming denotes an expression of gender that is different from what is culturally expected, for example, a boy who likes to wear clothing that our society associates with femininity. A gender non-conforming person is not necessarily transgender. Transsexual is a subset of transgender people who have transitioned to another gender, often with hormones and/or reassignment surgery. I thought I was being helpful, and sent a note describing a patient as MTF, and the recipient of the note thought I was talking about Monday, Tuesday and Friday. MTF is shorthand for Male to Female or a Transwoman, while FTM is Female to Male, or a Transman.

Background

Prevalence of Transgender Depends on definition Gender variant 1:500 Transitioned 1:20,000 DSM V Natal adult males 0.005% to 0.014% Natal adult females 0.002% to 0.003% Gay, Lesbian & Straight Education Network (GLSEN) 2011, 1.4% Human Rights Campaign (HRC) 2012, 9% Now I want to put gender variance into context for you. How common is it? This is a very good question that does not have a great answers. Prevalence depends on definition – is it the natal female who likes to play football? Is it the adult natal female who is taking testosterone and has had top surgery? Gender variance is thought to be 1 in 500, transitioned adults are thought to be 1 in 20,000. The DSM V talks about natal adult males and natal adult females, but these rates are probably underestimates. HRC completed a survey in 2012 of 10,030 self-identified youth, ages 13-17, 925 or ~ 9% identified as gender variant.

Stability of Gender Identity Static and binary or FLUID over time Rates of persistence Natal males – 2.2% to 30% Natal females – 12% to 50% Most children ages 5-12 years diagnosed with gender dysphoria do not persist as adolescents Desistence Natal males – 63 to 100% identify as gay Natal females – 32 to 50% identify as lesbian Wallien, J Am Acad Child Adoles Psychiatry 2008; 47(12):1413-23

Coming Out – Gender Variant / Transgender Patients Mean, (Age Range) Biological Female Male Age of presentation 14.8 (4-20) 15.2 (6-20) 14.3 (4-20) Total n, (%) 97 (100) 54 (55.7) 43 (44.3) Gender variant and transgender youth also come out at early ages. These are data from the Gender evaluation and Management Service at Children’s in Boston. Of 97 consecutive patients, the average age was 14 years, but they saw children as young a 4 years of age. Additionally, the biologic females were older at presentation than the biologic males, and this is probably because it is easier to be a tomboy in our society, than it is to be a boy who wears dresses. GeMS Clinic, Children’s Hospital, Boston Spack, Pediatrics, 2012

Coming Out in Cincinnati – Gender Variant / Transgender Patients Mean, (Age Range) Biological Female Male Current Age 16.3 (6-23) 16.3 (7-22) 16.4 (6-23) Total n, (%) 90 (100) 50 (55.6) 40 (44.4) Over 15 months. Averaging 5 new patients per month. Cincinnati Children’s Hospital Medical Center July, 2013 – September 2014

Etiology – Multifactorial Culture Genetic Family clusters Biological Brain differences Hormonal Prenatal androgen exposure Environmental No evidence that parenting style, abuse, or other events influence orientation/gender Etiology of transgender is multifactorial. In different cultures, there are a wide range of beliefs about gender and definitions of masculine and feminine. There are LGB family clusters, which suggests a genetic component, but there is no clear pattern of inheritance. Identical twin concordance is thought to be 48-66%. One thing that parents of transgender children often ask, is don’t we need to do chromosomes? The answer is no, because child has normal genitalia and physical development associated with their natal gender. There are brain differences noted in gender variant people. In MTF, two sex-dimorphic nuclei, the central portion of the bed nucleus of the stria terminalis (BSTc) and the interstitial nucleus of theanterior hypothalamus 3 (INAH3), located in the hypothalamus, appear to be female-sized and thus smaller when compared to men. One hypothesis is that exposure to high levels of prenatal androgens can cause brain changes, but there is no variance in hormone levels post-natally. There is no evidence that parenting style, abuse, or other events influence sexual orientation or gender identity.

Patient Assessment

As we start to work with the trans As we start to work with the trans* patients and their families, it can feel a bit like Alice in Wonderland. It may seem strange to us at first, but as we increase our knowledge and aptitude, we become more comfortable. I have been taking care of trans* patients for almost 10 years, and I am very comfortable in this world. However, we need to remember that other people, including our support staff and families of our patients may feel like they have gone down the rabbit hole.

Our goal, as providers and in our clinics and in our hospital system is to provide a safe environment for our patients to self-identify. We are not the gender police. Gender Police?

Safe environment

Ask preferred name and pronouns: Use them! In addition to training ourselves, we need to make sure that our clinic staff – everyone from the front desk staff to the nurses to the providers understand how to provide an affirming environment. We are in the process of training ASRs and ancillary staff to make sure that we are providing culturally competent and respectful care. Please let us know if you would like training for your staff. Asking preferred name and pronouns and using them! Ask preferred name and pronouns: Use them! NATIONAL LGBT HEALTH EDUCATION CENTER: A PROGRAM OF THE FENWAY INSTITUTE

The second thing to do is to find or designate gender neutral or family restrooms. Imagine being a spork trying to decide between the spoon restroom and the fork restroom. I spend a lot of my time writing bathroom letters to schools – not something I imagined doing when I was in medical school. I have to laugh about it, because if I didn’t, it would make me cry – everyone deserves a safe place to go to the restroom. Imagine instead that you are a spork, trying to decide if you should go in the spoon or fork locker room to change into your bathing suit for swimming in gym class. That is how I ended up caring for transgender patients. My first patient was unable to decide what to do in that situation, and attempted suicide, and I provided his medical care while he was hospitalized and from that point forward. “What to do? What to do?”

Environmental Scan Waiting rooms and common areas should reflect the patients we serve and be inclusive Non-discrimination policy Posters, brochures Information and resources Stickers for badges

History-Taking

Presentation May present at various ages May be fluid Prepubertal Peripubertal Adolescence Adulthood May be fluid Increasing in number Open recognition of gender minorities

Laverne Cox – Orange is the New Black

History-Taking History of gender dysphoria How is the family doing? What is the family doing? How is school? Where are they going to the restroom? Changing for gym? Where else does the child interact with the community? HEADS exam

Psychological Assessment Acknowledge presenting concerns Thorough assessment Gender dysphoria Other mental health concerns Emotional functioning Peer and social relationships Intellectual functioning / school achievement Family functioning

Trajectory Not clear Child needs to be accepted and loved for who they are Ideally, parents adapt quickly, manage their own emotions and reactions, and create a safe home environment Some parents need time Denial, dismay, anger often move to acceptance

DSM V Gender non-conformity is not a mental disorder Gender dysphoria – preferred term Clinically significant distress and impairment for at least six months related to incongruence Desire must be present and verbalized in youth Gender Identity Disorder (GID) – no longer appropriate

Developmental approach Avoids disease and pathology Fluid, flexible view of gender Cognitive and developmental perspective Development of identity Exploration of cultural roles Successful integration into adulthood Careful screening of gender experiences

Child Development Most children can verbally describe their own and other’s genders between 18 and 24 months of age. Children as young as 2 start to demonstrate preference for toys, games and types of play. By the age of 4, children use gendered words – he/him, she/her. During the school-age years, children typically view gender and gender roles as static. One of my young MTF transgender patients would come home from school crying because she was always told she had to be the Daddy when they would play house at school.

Younger Children Some are quite clear about their gender identity Some may not have the capacity to verbalize or conceptualize Behavior, mood and social problems

Consistent persistent Insistent Parents often think or want to know if this is a phase their child is going through. It may be, but the things we are looking for the child to be consistent, persistent and insistent on their gender identity.

Preexisting Psychiatric Diagnoses Mood disorders (12-35%) Anxiety (16-24%) Suicidal ideation and self harm (9-22%) Suicide attempts (9%)

Adolescents May start to identify at puberty Very difficult time Ask about gender identity High rates of self harm and suicidality (40%)

Earlier Screening for Gender Development Systematic screening and counseling about gender Identify and support sexual minority youth Creates a safe environment Helps children articulate and express themselves Modeling support and acceptance

What else could it be? Disorders that may produce gender confusion Schizophrenia Psychotic depression Mania Emergence in the context of trauma

Common Issues for Trans* patients Lack of access to care Insurance issues Socioeconomic issues Homelessness Foster Care Violence Bullying & harassment Hate crimes Common issues for trans* patients include lack of access to care – it can be hard to find Trans* friendly providers. Of LGBT adults, 19% have been refused care and 28% were harassed at the provider’s office or at the hospital. Adolescents may not have insurance or may be afraid to use it. When a teen comes out, there is a high risk for abuse and rejection. 20-40% of homeless youth may be LGBTQ and a large number are in the foster care system, which often lacks training for foster parents. They may suffer violence related to gender identity, and are at extreme risk because gender identity is difficult to hide. Perpetrators of violence can be parents, teachers, police officers, health care providers and other students. Sexual minority youth are twice as likely to have been verbally harassed at school as non-LBGT youth. 15% of those who are transgender or gender non-conforming left school due to harassment. Injustice at Every Turn: A Report of the National Transgender Discrimination Survey National Gay and Lesbian Task Force, February, 2011

Thursday, June 27, 2014 Tiffany Edwards — a 28-year-old transgender woman of color — was found shot to death in the middle of the street in Walnut Hills, Ohio, a suburb of Cincinnati. Hate crimes happen here in Cincinnati. Although incidents may be random, they may feel targeted and can cause identity crisis, loss of trust, perception of personal vulnerability and mental health effects.

Negative Health Outcomes Higher levels of family rejection during adolescence have been linked to negative health outcomes for GLBTQ youth

Common Mental Health Issues Depression/Suicide > 8 times as likely to attempt suicide 6 times as likely to be depressed Anxiety Eating and body image issues Substance abuse > 3 times as likely to use drugs 2 times as likely to use tobacco Sexual minority youth may have mental health issues. They are more than 8 times as likely than non-LBGT youth to attempt suicide and 6 times as likely to be depressed. They may have anxiety or eating disorders. They are more than 3 times as likely to use drugs and twice as likely to smoke. Another concern is that they may be forced into reparative therapy, to try to make them “straight” or revert back to their birth gender. Ryan, Family Acceptance Project, 2009

Other Common Health Concerns Overweight and Obesity Sexual Health Issues Violence and abuse – 3 X Early sexual debut – 3 X Multiple sex partners - > 2 X Sexually Transmitted Infections Higher HIV rates – 4 X Unintended Pregnancy - > 2 X In addition to mental health issues, sexual minority youth may also have other health concerns, including obesity. They are 3 times as likely as non-LGBT youth to experience dating violence and forced sexual encounters. They are 3 times more likely to have had their first sexual intercourse before age 13, and are more than twice as likely to have had 4 or more lifetime sexual partners. Because of these risks, they are more likely to have had a sexually transmitted infection, and are 4 times as likely as non-LGBT youth to have HIV. Also, teens who identify as lesbian and bisexual are twice as likely to report an unplanned pregnancy. Kann, MMWR Surveill Summ 2011 60(7):1-133

Don’t forget! They can still be normal teenagers!

Affirming Clinical interactions

Defining Gender Expansive Do you consider yourself male, female, transgender or other gender (e.g., genderqueer or androgynous)? Male Female Transgender I prefer to identify as: (Specify) ________________________ Decline to answer 66% 10,030 LGBT youth, ages 13-17. 925 identified as transgender or other gender. If we are asking people if they are transgender, we may be missing a large number of patients. HRC Youth Survey, 2012

Gender-related questions CDC Natal Gender Current Gender Teen Health Center Method Do you consider yourself male, female, both, somewhere in between or other? One question that we do not ask enough is about gender identity. This is a 2-step question asked by the CDC in their HIV surveillance surveys. It provides more detailed & accurate demographic information and minimizes confusion among non-transgender people, who may be unfamiliar with the concept of gender identity.

What to do if someone comes out Be cautious in offering guidance which may be construed as encouragement to come out Youth are the best judges of how their families may react Offer general support, make referrals and be available for future advice or assistance

What to do if someone identifies as Trans*

Mental health treatment plan

What our patients want

What our families want

What we all want

Evidence - and Consensus - Based Practices Endocrine Society’s Clinical Guidelines Endocrine Treatment of Transsexual Persons 2009 World Professional Association for Transgender Health (WPATH) Standards of Care for the Health of Transsexual, Transgender & Gender-Nonconforming People 2012 American Psychiatric Association (APA) Report of the APA Task Force on Treatment of Gender Identity Disorder 2011

Children Optimal approach is controversial No randomized controlled trials (RCTs) Highest level of evidence is expert opinion Outcome – without treatment – a minority will identify as transgender in adulthood Unable to differentiate at a young age No follow-up data have demonstrated that any modality of treatment has a statistically significant effect on later gender identity

Overarching Goal of Treatment Optimize psychological adjustment and wellbeing of the child What does this mean? Minimize gender atypical behavior Prevention of adult transsexualism

Approaches to Gender Dysphoria in Children #1 – Work to lessen gender dysphoria and decrease cross-gender behaviors and identification #2 – No direct effort to lessen gender dysphoria or gender atypical behaviors or remain neutral and have no therapeutic target for gender identity outcome #3 – Affirmation of gender identity with support of transition to a different role #1 May decrease the chance of persistence, for some persistence may be an undesirable outcome. #2 #3 Option for pubertal suppression

Social Transitioning Externally presenting in one’s authentic gender Entirely reversible No long-term outcome studies

Consensus Recommendations for Children Accurate diagnosis Diagnosis and treatment of coexisting psychiatric conditions Identification of mental health concerns in caregivers Provision of psychoeducation and counseling about the full range of treatment options Provision of age-appropriate information to the child Assessment of safety – family, school, community

Adolescents 2 Groups Recommendation for staged gender transition Persistence from childhood Onset in adolescence – more psychopathology Recommendation for staged gender transition Social transition – real life experience (RLE) Puberty blockers Gender Affirming hormones No RCTs, case reports and studies without control groups

Adolescents Long-term trajectory is more predictable For adolescents who underwent pubertal suppression, all have continued on to gender-affirming hormones and/or surgery Rare for adolescents to regret gender transition

Consensus Recommendations for Adolescents Accurate diagnosis Diagnosis and treatment of coexisting psychiatric conditions Psychotherapy and provision of support prior to and during transition Assessment of readiness for puberty blockers and/or gender affirming hormones Provision of psychoeducation to families Assessment of safety – family, school, community

Psychological and Social Interventions Help families be supportive of their child Focus on reduction of distress related to gender dysphoria and other psychosocial difficulties Formal evaluations of different psychotherapeutic approaches have not been published Reparative therapy is not effective, not ethical

Psychological and Social Interventions Help families manage uncertainty Do not impose a binary view of gender Support families in making difficult decisions Extent the child is allowed to express their gender role When to inform others Who to inform

Working with the transgender treatment team

What Are We Doing? Patient and family support & resources Interacting with schools and community SAFE letter Menstrual suppression Puberty blockers Gender-affirming hormones Assisting with transition

What Do We Need From You? Assessment of gender dysphoria Family counseling and supportive psychotherapy to alleviate distress related to gender dysphoria Assess and treat any coexisting mental health issues Refer to us for physical interventions, resources and support WPATH Standards of Care, Version 7, 2012

What Do We Need From You? Letter of support Diagnosis of gender dysphoria Patient is psychologically stable

Local and National resources

Transgender Clinic Division of Adolescent & Transition Medicine Ages 5 to 24 Locations Main Campus Liberty Northern Kentucky Multidisciplinary Clinic - Quarterly Pediatric Endocrinology Pediatric & Adolescent Gynecology

Resources for Families Family Acceptance Project - familyproject.sfsu.edu Trans Youth Family Allies - www.imatyfa.org Human Rights Campaign – www.hrc.org PFLAG – www.pflag.org GLSEN – www.glsen.org Advocates for Youth – www.advocatesforyouth.org

Resources for Providers Human Rights Campaign – www.hrc.org LGBT Cultural Competence GLMA: Health Professionals Advancing LGBT Equality – www.glma.org Cultural Competence Webinars Advocates for Youth - www.advocatesforyouth.org Publications for working with LGBT youth Physicians for Reproductive Health – prh.org

Post-Test Question #1 Transgender teens have higher rates of this than the general population? 1. Congenital Adrenal Hyperplasia 2. Irritable bowel syndrome 3. Personality disorders 4. Polycystic Ovary Syndrome 5. *Suicide attempts

Post-Test Question #2 What is the most appropriate way to figure out someone’s gender? 1. Ask them if they are male or female. 2. Ask them if they are transgender. *Ask them if they are male, female, somewhere in between or not on the scale. Assume that they are male or female depending on how they are dressed. 5. It does not matter what their gender is.

Questions? October 13 - 17, 2014