Background

 

Those of us who give our time to our support group do so because we want to help fellow parents who are facing the same difficult parenting decisions as us. So of course we love to hear when our efforts have been useful. One dad wrote to us recently:

 

Wow, that information has been amazingly helpful and so professionally delivered. You do not know how much comfort that has given us. We will talk through this tonight and hopefully find a good time to discuss this in person. It has been so easy to fall into the trap of “the only solution is hormones” when so many examples suggest otherwise.

 

There's no bigger decision that parents are involved in than working out how to respond to your gender-distressed child's request for life-changing hormones (puberty blockers and cross-sex hormones). Parents arrive at different conclusions, drawing on their own past lives, the advice of family, friends and experts like doctors, and the views of other parents, and this dad had written to us seeking just that kind of advice. In conversation with this dad since, he has kindly allowed us to publish all this (with names changed of course) and explained that he was thinking that starting on blockers would be the next logical step for his child, and that he'd reached out, as much as anything, for information about accessing them. What comes over clearly in his initial email is his desire to help his child through a difficult passage in life.

 

I would like to get your thoughts on how others deal with the complexities that we are dealing with.

 

Tom (formerly Emma) had been showing a possible leaning towards a more masculine personality for many years before he formerly told us he was without doubt a boy last year at 13 years old. It is worth mentioning that Tom has an identical twin sister Alice who has shown none of the same traits but being identical twins and going through this also comes with its own challenges.

 

Over the past year Tom has been suffering acutely with anxiety and we think some depression, self-harming reared its head a couple of months ago but we appear to have talked through this and believe he is no longer doing this. His mood certainly becomes much darker and morose when he starts his period, we would certainly welcome some advice on how people usually deal with this kind of situation. He has also expressed a desire to start hormone treatment so also, advice would be much appreciated. He is a very intelligent and bright kid who has an extremely supportive Family, what we lack now is an understanding of how to ensure Tom is happy and what “the right thing to do” is in certain situations.

 

We're publishing our answer below, in the hope that it might reach other parents facing these important and difficult decisions. Our basic message is: whatever you do, go into it with your eyes wide open and with realistic expectations. Arm yourself with the best evidence you can find, and help your child consider it too.

 

A Letter to a Parent

 

Thanks for your email. It’s such a dilemma for parents isn’t it, how to negotiate these changes? Many of us are in a similar position. It’s really interesting that Tom has an identical twin whose response to gender has been so different. I suppose it underlines how gender identity is in many ways a response to their life situation – a child’s way of making sense of the world they see around them – rather than a biological ‘born that way’ phenomenon.

 

First things first. You’ll probably know this already but in case not: hormonal interventions are offered on the NHS as a treatment for young people diagnosed with 'gender dysphoria’ - a condition whose status in the diagnostic literature has evolved, but which effectively means that a young person has to suffer significant distress due to the dissonance between their body and their sense of their gender. Most young people who suffer gender dysphoria identify as trans or non-binary – for example Tom is a biological female who believes they are a boy – but in the NHS there is no automatic connection between identifying as trans and needing to medically transition. You would additionally need to feel that dissonance or distress – ie there would need to be a significant problem, which the hormones would be intended to alleviate. If you identify as trans and are happy in your body (as, in fact, the great majority of male-bodied adult trans women are) then there is no clinical rationale for treatment.

 

Secondly, there is no one right way to handle a situation like this. This entire field of medicine is so recent (in terms, certainly, of large numbers of children discovering clinical levels of gender distress in adolescence), that as yet there is little robust evidence to inform treatment decisions: the research simply hasn’t been done. Currently, NICE are undertaking an evidence review, and the shorter review published last year on the BMJ website by Carl Heneghan, Professor of Evidence-Based Medicine at Oxford, gives a clue to its likely findings. Heneghan concluded that:

 

"puberty blockers are being used in the context of profound scientific ignorance… the current evidence base does not support informed decision-making and safe practice in children.”

 

So what we would say is: whatever you do, go into it with your eyes wide open and with realistic expectations. For example – and this is something that good studies do back up – undergoing a medical gender transition (ie puberty blockers, gender-affirming hormones and then surgeries) doesn’t offer long-term relief of other psychiatric problems, such as mood disorders (depression and anxiety), self-harm and suicidality. Sweden is the only country that has generated high-quality evidence as they have access to population-level data (data from every single transitioned person in Sweden). A well-known 2011 study by Cecilia Dhejne found that mortality among post-operative trans people were far higher than in the general population, and for example the levels of completed suicide were 40 times higher among trans men (ie biological females). This table from the study makes the point (all the lines start at 100% – everyone is alive – in the top left corner, and as time passes and the lines move to the right, they also move towards the bottom (some people have died). The dotted lines for trans people show unfortunately that they died much sooner than the general population):

 

 

 

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A more recent 2019 study by Bränström and Pachankis again looked at population-level data from Sweden and concluded that gender-affirming surgery conferred no benefit on patients in terms of their subsequent mental health needs, when comparing them with patients who hadn’t had surgeries. A very recent 2020 study from Rittekerttu Kaltiala at the Finnish gender clinic (considered to be leading the field in terms of their understanding of gender dysphoria in adolescence) concluded that:

 

"Those who did well in terms of psychiatric symptoms and functioning before cross-sex hormones mainly did well during real-life. Those who had psychiatric treatment needs or problems in school, peer relationships and managing everyday matters outside of home continued to have problems during real-life. Medical gender reassignment is not enough to improve functioning and relieve psychiatric comorbidities among adolescents with gender dysphoria."

 

Evidence for the benefits of puberty blockers is especially thin and there are safety concerns too, given the absence of knowledge about their long-term effects, and the impact of staying on the blocker for several years. The NHS website states: “Little is known about the long-term side effects of hormone or puberty blockers in children with gender dysphoria… it is not known what the psychological effects may be. It’s also not known whether hormone blockers affect the development of the teenage brain or children’s bones."

 

There’s one essential bit of history to know too: puberty blockers to treat adolescents with gender dysphoria were meant for children with life-long gender dysphoria, not teens whose gender distress began later. Puberty blockers were first used for gender dysphoria by the Amsterdam gender clinic in the late 1990s – it’s known as “the Dutch protocol” in fact – and the intervention was, in the words of the then head of the clinic, meant for:

 

"only those applicants for SR [sex reassignment] who have from very early on - toddlerhood - shown a clear and extreme cross-gender identification in all social environments”.

 

When puberty blockers were introduced in the NHS in 2011, the same criteria were applied. They were for adolescents who’d had life-long gender dysphoria, whose distress had exploded at the onset of puberty - as, of course, their body was now rapidly changing in an unwelcome direction. It was considered safe to do this because clinicians had observed that – for these children with life-long dysphoria from toddlerhood – their gender identity was usually ‘baked in’ once they’d got past the first stages of puberty. There was little likelihood that their gender would change, so it was ok to consider these drastic treatments.

 

But after a couple of years, the numbers of children demanding access to these hormones rocketed. Over the past decade, referrals to the NHS’s gender clinic have risen by 3590%, and referrals of girls by 4718%. And not only that, but where before the NHS treated mostly boys (ie going from boy to girl) now it was mostly girls who wanted to become boys or men. And two more crucial differences. Firstly, these weren’t children, they were teens who’d had (in the NHS’s own words) a “gender-uncontentious childhood”. Secondly, they were significantly more psychologically complex than earlier Dutch-style patients. So most of what clinicians felt they knew, about how to manage gender distress in young people, no longer applied as it was based on a different situation. The NHS is only now catching up with this, as it is undertaking a wide-ranging review of gender identity healthcare for children (more on that below).

 

None of this is to say that medical transition isn’t the right path for Tom. But it makes us cautious about interfering in our own children's natural puberty when they don’t fit the eligibility criteria that the Dutch defined in their protocol. Our children all make sense of themselves with transgender identities; but we’re as yet unconvinced that permanently changing their bodies with hormone therapy is the right answer. We recognise that not conforming to society’s rules about gender might make them think they’d need to assert control over their body – especially during a turbulent period when their bodies are changing so fast, in often unwelcome ways – but we feel that, before those more radical and invasive steps are considered, a lot of effort should be invested in helping them feel comfortable in their own skin; helping them realise they don’t need to conform to any rules about gender, that there’s no need to change themselves, if anything it’s society that should change. Who knows how they’ll feel in five or ten years’ time? We don’t want to foreclose their options in life by sterilising them and (after 4 years of testosterone) requiring a hysterectomy which would mean a life-time reliance on hormone therapy (as the body can no longer produce its own). As the GIDS clinical psychologist Dr Aidan Kelly said in a 2018 lecture they carry significant burdens and risks, and might themselves be changing outcomes:

"The blocker is not a benign thing it’s not a …it comes with, I don’t mean a financial cost, but it comes with a downside. Especially around energy , especially if the person has mood difficulties the blocker can sometimes make that worse and it also takes away those sex hormones so that whole thing about, in terms of being attracted to people, developing crushes ..when all your teen peers are getting in to relationships and developing social connections.. In that sense it will be gone. I mean not totally gone but that drive, that kind of interest in whether it’s the opposite or the same sex or whatever its kind of greatly reduced. And we do worry because we don’t have long term outcomes for this. We do worry what impact that might have on their identity because sexuality is such an important part of your identity, who you are attracted to."

You haven’t mentioned what support Tom has had from CAMHS or other services, for example for his depression or self-harm. We would hope that there are good resources and advice to be had from these, concerning the low moods that are related to his periods; and if you haven’t yet, we’d suggest that accessing psychological support from CAMHS or a qualified private clinical psychologist to help Tom with their mood problems could be helpful. There are very good, evidence-based approaches to anxiety, for example, such as CBT. This is also where our own emphasis is for our children. All the uncertainty over medical solutions to psychological or identity problems makes us want to focus on attending to our children’s mental health and developmental needs. In our committee alongside me are parents whose children have sadly self-harmed and even suffered suicidality. Adolescence can be an incredibly challenging time for a child, and for the family.

 

You may know that a dozen studies have been done over the years, tracking the long-term outcomes of children who were patients at various gender clinics in Europe and North America. Their gender identity and gender dysphoria were measured in childhood, and then many years later in (usually) early adulthood (though there are a range of ages). Every single study found that most children’s gender dysphoria had abated and that they’d reconciled themselves to their bodies without the need for any medical intervention. During the year since we began our support group, several parents in our group have reported that their children have abandoned their trans identity and given up ideas of body modifications. One girl did so during covid this summer, on leaving school at the end of her 6th form, having been a trans man for four years; another in the past few weeks, after only a few months’ identifying as trans; the mum of an young adult man on the autistic spectrum left us after her son told her he didn't want hormones and surgery after all. And of course there are a growing number of (mostly) young women who have detransitioned - they’ve transitioned back into their original gender role. Their stories are all over social media.

 

One final thing, which you may have read in the news. Reflecting the huge rise in referrals, and the change in the kinds of patients presenting for treatment, the NHS is undertaking a broad review of the way it supports young people with gender dysphoria, chaired by Dr Hilary Cass OBE. Her remit was published only last week, in fact. You can see (eg from points (i) and (ii)) that they are anticipating the possibility that in the future some young people may not be seen by specialist gender clinics at all, but would instead be referred to a local CAMHS for psychological support only. Similarly, the leading Dutch gender clincian, Annelou De Vries, recently called for caution in proposing hormonal interventions for adolescents who lack a clear early-childhood history of gender dysphoria:

 

Given these uncertainties, providing early medical treatment to transgender adolescents remains a challenging area to work in… [more studies are needed which] differentiates who will benefit from medical gender affirmation and for whom (additional) mental health support might be more appropriate.”

 

So at the moment, the evidence is lacking. Parents in our group have chosen the side of caution, learning to tolerate uncertainty and offering psychological support. But other parents feel that the medical path is right for them. We can’t choose for you of course, but we’d be very happy to talk about this more on the phone if that could be helpful? We are just parents like you, facing the same challenges of how to support our children growing up in this increasingly complex world. Feel free to call us on 07305 212761 (it’s helpful if we could arrange a time for it).

 

Best wishes

 

Bayswater Support Group