Episode one, part two
Part two of our Trans Youth Care episode focuses on the latest medical thinking coming out of the US. Dr Helen shares her thoughts with Marianne on how this compares with the current approach in the UK.
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Trans Youth Care Conference: www.transyouthcare.com
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Season 2. Episode 1. Trans Youth Care (part 2)
Hello, this is Dr. Helen Webberley. Welcome to our Gender GP Podcast, where we will be discussing some of the issues affecting the trans and non-binary community in the world today, together with my co-host Marianne Oakes, a trans woman herself, and our head of therapy.
Marianne Oakes: Clothing is the unconscious language of the spirit, and clearly expresses itself more when the tongue is condemned to silence. This idea that gender is all about clothes and you touched on it earlier, Helen, when you said that what this idea that we have with what is a boy and what is a girl? I find with a lot of the young trans people, particularly, is that they will fit the criteria to gain acceptance from their parents, but when they become independent – and by independent I mean have access to medical treatment – they will start to express gender differently. So yes, we put a lot of emphasis on clothes and makeup and that kind of thing, but that idea that when the tongue is condemned to silence, when we can’t express ourselves verbally in any way, we express it through the clothes. Actually, as we become more comfortable, we will start expressing it in other ways. So we will get a lot of trans boys that will wear makeup and nail varnish, and you will get a lot of trans girls that will start wearing jeans and t-shirts. I just felt that to me it really stuck out.
Dr. Helen Webberley: Isn’t it really interesting how much fear that causes us cis gender people around them? When you see your trans son all of a sudden wanting to experiment with makeup or nail varnish, you are thinking, “Oh my goodness! Have I made a mistake?” the other thing about that external expression is children and teenagers that we see, who have found it difficult to be allowed to express themselves through clothing, express themselves through other ways. I think the percentage of piercings, tattoos, and big ear piercings, those are kind of accepted ways of showing your body in a different kind of way. And then of course underneath their clothes, those scars, cuts, the other way of expressing that their body isn’t right. Perhaps if we allowed these youngsters just to express themselves the way that they want to, through clothes, through hair, through whatever it is – we all like clothes, we all like hair, we all want to look the way that we want to look in the mirror. We are preventing these youngsters from doing that, and I perceive, as a doctor, that to be much more harmful and much sadder and more traumatic.
Marianne Oakes: You bring me round to asking you about how did you feel at the conference about their approach is to medically help these children? Because I am really conscious. I spoke there about how contained a lot of trans children are in their expression, but once they get the medical process going, it frees them. In other words, if you’ve got a trans boy with facial hair, that they can wear lipstick because people will still see them as male. I just wonder if listening to how their approach is medically, how it compares to what your experience has been.
Dr. Helen Webberley: I just wish I could work in that environment. It is so affirmative. Joanna talks about, and smiling, as I remember her talking about the different stages of treatment. Basically, stage one is hat and a handbag. Nothing more. Just allow your child to be who they are and experiment with what they want to look like. Stage two, when puberty starts, and that child says to you that they don’t want this puberty, and that it’s going to do really bad things to them, give them puberty blockers. Puberty blockers are safe, they are reversible, and we have been using them in children for a very long time. And then, three, is give them hormones. And when do you give them hormones? You give them hormones when it is the right time for that child to do puberty. And when is the right time? That’s tricky, because cis gender children, you don’t get to choose the time. Your body just wakes up one day and say, “You know what, I am going to start your puberty today.” It might be at 8, it might be at 9, it might be at 15. We have all seen people who have a big range of when they start their puberty, so for a trans child, we don’t know how to let them start their puberty. When is the right time? And who should say? Should it be mum; I think my child is ready to start puberty now? Should it be the doctor; I don’t think you are ready to start puberty yet? Or should it be the child; everybody in my class is starting puberty and I am feeling left out? I am a girl, but I can’t produce the hormones that a girl needs to go through puberty. So can you help me? And the most beautiful thing in how Joanna talked about this is that there is no age. There was no age. There was no “you have to be six before I let you wear a hat and a handbag” or “you have to be fourteen before you are allowed puberty blockers” or “you have to be sixteen before I even let you start your puberty that you want”. However the child or young person feels; it was just so refreshing and so heartwarming. I as a doctor am in trouble with my medical regulators for doing those three things exactly the same way as Joana does. In the UK, this is not acceptable behavior. In the USA, this is their gender affirming model, and has been for many years, and has been a very successful model for a long time. We have got a long way to go in the UK. The other thing that I feel the UK does really badly is that our UK NHS protocols are still quoting that 84% desistance rate. So it’s not even that we are still discussing it, they are still quoting it in their recently updated guidelines. It is being quoted that as many as 84% of children may change their mind. Joana said, very simply, and I will quote what she said, “that 84% figure is a gross misrepresentation of data that was grossly misrepresented.” It is wrong.
Marianne Oakes: Definitely. I have to say that at the very start of the conference, the most powerful part, and it set the tone of the conference, and again I am going to throw this back to you as a doctor because I think there is something about being a parent and being a professional in any kind of area that we are seen as an expert. Parents feel that they are the experts of everything. They said right at the beginning of the conference that the child is the expert. And I know, as a parent, I have to say, and as a therapist – to hand over that expert mantle to the person in front of us is not always easy. But coming away from that conference, I felt that this is what we are actually doing here. We have to trust these children to know their own bodies. I don’t know how that fits with you as a doctor.
Dr. Helen Webberley: Absolutely. They know themselves. They live with themselves every single day. Who is the expert here? It’s a shame that that young person is going to have to be the one that will educate the parent, often the one who educates the therapists, and definitely has to educate the doctors who are not used to this kind of thing. That is a great responsibility.
Marianne Oakes: It is for a young person, isn’t it? They are going to sit there, and I think that is where the validation process which is adopted in many clinics. I don’t want to say in the UK, but I think many clinics throughout the world, is that somehow these children need fixing, and that they are the experts in fixing them. And actually, any trans person coming for help doesn’t need fixing. They need support. There is a big difference. Unfortunately, I think, the experts tend to feel that they know best.
Dr. Helen Webberley: Well, at the end of Joana’s day, she said thank you to her lovely trans youth that came on the panel at the end. She said thank you to Aiden and thank you to Darlene for their contributions. She thanked all the children and families that had taught her so much, and that had shaped her career, and given her the wisdom and the knowledge and grounding blocks to help so many other people. And I really resonated with that. if I go back to the people who come on the radio and just say, “I don’t get this. If you were born a man, you were born a man.” Actually, I feel sorry for those people because I don’t feel that they ever met a transgender person. I have met a lot of transgender people. And all of my knowledge and all of my education, most of my attitude and wisdom has come from those people. You know, I am going to publicly here thank all of those people who have taught me so much, that allow me to therefore go on and teach others. Their wisdom and courage is absolutely amazing.
Marianne Oakes: I think that the four children who came in at the end actually was the perfect ending to the conference. Because whatever anybody in that room was feeling, towards the end of the conference, you couldn’t argue with the children, their experience was very real. Even the child that got upset at the parent over the ponytail, we were living some of what we’ve just been taught. And I thought, actually, the conference was full. It was a lot of information. Sometime you felt a bit bombarded, just to experience that last hour was a privilege, I have to say.
Dr. Helen Webberley: I asked a question at the panel. I don’t know if you remember, Marianne, but I took the microphone and I said I am from the UK and in the UK we do things slightly differently. In the UK, you wouldn’t be allowed to have hormones until you were 16. And I wondered how they felt about that. Bearing in mind that we had three trans boys aged 15 and 16 and 17, and all of those three trans boys had all had top surgery and were all very well established on their testosterone therapy, living as young men, as they should. And we had one trans girl she was slightly older, an 18-year-old. When I asked them how they would feel if they were living in the UK and had to wait until they were 16 to start hormones and not even be considered for any surgery until they were 18, there was this kind of stunned silence from them. It was then said, “I don’t think I would be here. I don’t think I’d have made it.” Those are two very powerful statements from a young person. I don’t think I would be here, and I don’t think I would have made it – these both mean that they might be dead. That was shocking to me to hear those words from a young person. I felt really glad that they were able to get the care that they needed to live themselves authentically.
Marianne Oakes: One of the most important parts of al of that was they were all functioning in the world. There are so many 15 year olds over here who can’t even get into school. They can’t form friendships. I am going to go back to Darlene as well, she talked about the trauma of years, that actually, keeping somebody back from going through puberty, that resonates for the rest of their life, their socialization, their social skills, their grades in school that actually doing nothing is far more damaging that doing something. To see them four children brave, we can’t call them children, you know. I apologize to you youths. But the reality is the reason that I found that powerful was that we do not get to see – I want to say the end result of our work – that if we do our job well, then these youths go on to just get on with their lives. And hopefully flourish, but at least in a better position to deal with life’s ups and downs.
Dr. Helen Webberley: Absolutely. One of the things that I see a lot from parents is that when it comes to doctors to talk about it, and discuss it, they say that they are not sure that this is the right thing for their child. Because my child hasn’t always said that they were trans, there were a few years when they didn’t or they haven’t always wanted to do this. There was some time when they said no. But there is also this kind of late teenage point, and I have met this a lot, when the mum and dad go and say, you know what, they have socially transitioned, they wanted to be a boy, and then in year 11, they suddenly said, “You know what, I am just going to go back to be a girl.” And so they say to me, well how can my child truly be trans if they wanted to go back to girls’ uniform and girls’ makeup and what have you. And I wondered about that as a doctor. I hadn’t understood that. Joana touched on this quite succinctly, actually. She said that it is very common for trans teenagers. As she described it, she said that they try on their birth sex one last time to see whether they can make it fit. I thought that was really powerful, and I was really pleased that she had crossed this a lot, as well as all those parents who told me about it, as well as I had come across it. Is it that person giving it one last go to see whether they can actually be ordinary, rather than slightly different. Do you get that, Marianne? Do you see that in your client work?
Marianne Oakes: Definitely, yes. I think part of the growing process, more for the young people that are doing it on their own, play with their presentation, and say that they want to go back to the clothing and the conscious language of the spirit. And that is swimming against the tide, and they need to contain it that they will go through – certainly with the trans boys – a burst of femininity. So just before they come out, actually, they become ultra feminine. I think that really confuses the parents when they come out. It is different for me, because when parents speak to me and they will say, “We never saw this coming. We never saw it,” I can say that my parents never knew. They never say this. I have plenty of evidence. I came out when I was quite young to my partner, but my parents would never have known. When the parent says to me that they never saw it coming, the reality is nobody sees it coming. It’s not an obvious state of being. We’ve taught ourselves to keep it in.
Dr. Helen Webberley: One of the questions that is often asked, you know medically, you asked me to talk about the medical bits, my medical understanding and learning from the conference, and there is this fear that adolescent brain is capable to cope with drugs, with medication, is it developed enough to go through puberty? Are we doing harm by using blockers to stop puberty? Are we doing harm by using hormones to start puberty? There is quite a lot of worry about doing harm. Joanna talked about this by using cis gender children as an example. She says children who identify with the gender that they were assigned at birth, she said that those children are allowed to go through puberty before their brain is fully developed. And they don’t come to harm. Cis children are old enough to start puberty at 8 or 9 or 10 or 11 or 12. Children don’t have to explain to the world how they know that they are a boy or a girl, in the same way that cis adults don’t know how to explain they are a man or a woman. It was interesting. We have got a whole cohort of people to compare transgender children to, and they are the cis gender counterparts. It’s the hormones that we use, they are identical hormones to the ones that the body produces. Sometimes when we are using medicine, we use a drug or a hormone or a chemical or a compound that is quite different to what a body would produce. But the hormones that we use to treat or to bring on puberty in transgender children are exactly the same chemical compound that your body produces. So a cis gender female would produce the same estrogen that we would give in a medicine to a transgender female. We know that they are safe because we have got all the cis children in the world going through puberty on that hormone. Some people worry about the puberty blockers; are they doing harm? Nobody wants to harm a young person. But what we have to weight it with is that we know we’ve been using blockers for a long time, and in children who have gone through precocious puberty, which is puberty starting at the age of 4 or 5, we use blockers to stop it because we know that is too early. We haven’t seen any problems at all with using those medicines. Joana was talking about the balance of risk. We worry about giving children medication, but what if we don’t give them medication? If we don’t give a transgender child a puberty blocker, they are going to develops secondary sex characteristics, which are hair and voice and Adam’s apple, and breasts, and periods, and musculature and skeletons that really don’t fit with their gender identity. And we know that causes harm.
Marianne Oakes: You just brought something to my mind there as well. When we talk about puberty blockers, correct me if I am wrong, but actually the longer we are on them, so the older we are getting, are we more likely to cause damage over time, so therefore managing a transition appropriately would reduce the potential harm?
Dr. Helen Webberley: Yes, the big worry from puberty blockers is on bone strength. If you are on a puberty blocker for a long time, there is worry that your bones might get thin and weak. But what your body needs is hormones. Hormones make your bones nice and strong. The easy way to know that is if you look at post-menopausal women who have a curved spine, you know that kind of typical picture of an old lady who is hunched over a walking stick, that is because she lost her hormones when she was fifty. And then when she is 80, her bones become thin. It is osteoporosis which causes hip fractures and curvature of the spine. We need hormones to make our bones strong. The worry about the protocols that are being used in the UK that I worry about severely, is that if a child is lucky enough to get onto the early intervention program, and receive blockers at an early age, say for example 9 or 10 when puberty starts, and then they are not allowed to have any hormones until 16, actually what we’ve seen the reality is that aby the time the child is 16 and having their assessment, they may be 17 so then passed on to adult services, maybe another couple of years, that is a very long time for that young person to not have any hormones. I would worry greatly about the bone strength of a youngster who wasn’t allowed to have any hormones in their body until they were 17, 18, or 19.
Marianne Oakes: So in short, this is about a fully rounded pathway that takes into account that puberty blockers are safe, but they have got to be used responsibly in conjunction with eventually hormones.
Dr. Helen Webberley: Absolutely. And the other thing that Joana was talking about very sensibly was the hare and the tortoise, she called it. She talked about the three stages, so we say puberty blockers are reversible, which is lovely, and then we say that hormones are not reversible, and surgery is definitely not reversible. If we just unpick the hormones a little bit, there is not a massive explosion at the start of puberty. We don’t stat hormones on day one, and then have breasts at day five. She said puberty takes a long time, and trans kids find that it takes so long. Much too long for the child. We worry that starting the child on that roller coaster is going to just be a journey you can’t get off. Puberty takes time for the body to change. And we will watch – mum and dad and doctor and therapist – that child to make sure that things are gong well. And if at any stage something is not going right, we will go in there and explore what might not be right.
Marianne Oakes: Hence that is why we need a full team of therapists, medical staff to support the child to make sure that they are comfortable with where the things are.
Dr. Helen Webberley: And that is support, just support. What they need is parental support, school support, home support, society support, in the dress shop support, therapy support, doctor on the end of the phone, therapist in your pocket. These are tricky journeys and they need support on them.
Marianne Oakes: That was the one thing I liked about Darlene’s role in all of this. It’s fully rounded, she does help with the schools and the parents and is able to work with a broader range of issues. And again, bringing it back to the UK, I just don’t think we are there yet.
Dr. Helen Webberley: Marianne, what did you think about Aiden’s description of the noise that people with gender dysphoria can hear?
Marianne Oakes: I thought it was brilliant, I have to say. I have kind of talked about it since I’ve come back non-stop. I am not really clear what we mean when we say gender dysphoria, because I speak to lots of different people, and the description – there are no words to kind of describe it. And what Aiden did, he kind of put sense to the indescribable. It is like a head noise. It is where our heads are screaming at us about all the nuances of our vey being, and it is screaming about the environment that we are in, parts of our body, where we fit in the world. To call it head noise I think is perfect. One of the things that I have done historically, is talk about we only get to use twenty percent of our capacity to live our life with our thought processes, because the rest of it is taken up with this noise. I felt that what Aiden was doing was actually giving me a very simplistic way, but a very powerful way that demonstrates where you have the person try to take in some information while they were shouting, perfectly described what it’s like, every day, for a trans child.
Dr. Helen Webberley: Nobody wants to be different, do they? Nobody wants to feel different in a negative way. Nobody wants to not feel like they’re part of the club, or included, or popular, or liked. All of those things. Nobody wants to stand out and look different and feel different. That description of a noise that goes on in a trans person’s head, when all they can think about is “Am I being looked at? Has someone spotted that I have an Adam’s apple? When I speak, will they notice that my voice is very deep if I speak? Will my voice sound like it’s very high, when actually I am a boy? Is she looking at my stubble? Can she see that I have got hair growth on my lip? Can they see my breasts? Have I flattened them enough today? What if my period starts when we are swimming? What if someone notices that I am wearing this?” Oh my goodness, that noise going on all the time is hard enough. It’s hard enough being a teenager without all of those extra concerns about fitting in, being popular, being accepted, that noise just must be terrible.
Marianne Oakes: It’s the worst part of living a life as trans. The one thing that came to my mind is can they see I am wearing a binder? I talk to a lot of trans guys, and they say, “I’ve got my binder on, I don’t know if you can see.” That fear that it is going to get caught, that somebody is going to ask what is it that they are wearing beneath their top. That’s with us every second of the day. Maybe we are having a conversation and we could be talking about anything over coffee, that’s going on in the back of our mind. And the volume of it is going up and down all day. Somebody goes past it goes louder and louder. They carry on and it goes quiet. That, to me, the way Aiden described it and demonstrated it, was perfect.
Dr. Helen Webberley: I thought it was a really powerful demonstration. Tell us, for the listeners, what Aiden set up as a demonstration. What that noise was.
Marianne Oakes: basically, he got five volunteers. One had to sit on a chair and read off the script of neuroscience or something. It wasn’t a lot, but they had thirty seconds. The four people around had to read off these cards into the ear of the person trying to read it. After 12 seconds, he stopped it and asked them, “How was that?” they hadn’t read anything. I think he repeated it four times, and there was an element where you could eventually squeeze a little bit of information out of what they were reading. I am hoping that it was demonstrating to the people there that when you have a trans person in class, if you’re a teacher or a nurse, if you are a doctor even talking to a patient, not everything is going to be going in.
Dr. Helen Webberley: We have amongst our trans children population a very high rate of school refusal, or an inability to learn effectively. In our trans adult population, we have a very high incidence of people who aren’t in employment, or aren’t in any meaningful daily social engagement. Especially learning, can you imagine a child in a classroom learning, trying to look at the blackboard, trying to understand what is going on, when actually in their ear all they can hear is “what are the people behind me thinking? How am I going to go to the toilet? What am I going to do at break time? Can she see this? Can he see that? are they laughing at me? Are there looking at me? Do I fit it? How am I ever going to fit in? Oh my goodness, what am I going to do? How am I going to tell my mum about this?” It must be so distressing; I can’t even imagine. I have cis gender children and school is hard work. Imagine having all of that noise going on in your ear, as well as trying to fit in and work and study and get your exam results. Just hard.
Marianne Oakes: I think it also helps people to understand how a lot of trans children become socially withdrawn. That actually, that voce starts saying, don’t leave your bedroom, stay on the computer because they can’t see you on the computer. And then, in severe cases, I will just sit in this corner. I feel really sad even saying it but we witness it. I’m just going to expand it a little bit there, as well, because when we are reading in the media some of the stuff that is said about trans people in general, that that reinforces that voice in their head. The volume becomes unbearable.
Dr. Helen Webberley: And then the unbearable part, we kind of stop there, because what does it mean to become unbearable? Unbearable means that they can’t bear it, so what comes next? Something happens after unbearable. It just doesn’t stop at unbearable.
Marianne Oakes: Unbearable, then, is where we start getting the most mental health issues, like self harm, eating disorders, and in worse cases even suicide. What I do want to say to all of that is that it is preventable.
Dr. Helen Webberley: As doctors, we talked about this at the conference, that young people come to us on medicines for anxiety, stress, depression. Big powerful neuropsychiatric drugs to manage their symptoms of anxiety and depression, when actually, they are holding a flag saying, “Can you just give me some hormones, please?” You know, why aren’t we listening to that flag? Why are we pumping these horrible medicines into them?
Marianne Oakes: I would actually say, basically, what all of them are asking is “Can somebody believe me?” I find it hard to believe myself, with the environment I am living in. I need somebody to just believe me.
Dr. Helen Webberley: Well, it’s interesting. And we need to come to a close now, but Darlene quoted Cheryl Richardson. And the quote was beautiful, I thought. It was: “Listen. People start to heal the moment they feel heard.” So I think – I found that conference absolutely amazing. I felt so empowered to be in a room full of people, who are thirsty for knowledge, thirsty to know how to help trans people to live their lives more effectively, how to help trans youth to grow up and experiment with their bodies, their gender, their peers, their relationships, how to be effective in their lives in school, how to get the most out of medical help and psychotherapeutic help. I was completely and utterly empowered by the two days, and if anybody listening wants to go on that conference, contact us and we will give you the details. It is not just medical professionals, it was for parents, it was for trans people, and anybody involved in the lives or just interested in looking after and helping and supporting trans people to live their lives more effectively. I was completely and utterly empowered by it. You know, I am sure, Marianne, that we will both say a huge thank you to Joanna, Aiden, and to Darlene for having us. And actually, you know, they were so welcoming to us. They were amazed that we had come from so far away. We were treated like mini celebrities being there. They were so welcoming and they were so pleased that their voice was going to be heard by people in the UK. I am sure they would welcome professionals and lay people alike to go there from the UK. And I think that you and I, Marianne, both think that the UK has got a lot to learn from their gender affirmative approach.
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