A new paper co-authored by leading clinicians from the UK’s gender identity service (GIDS) for children and young people shows clearly how a policy designed to “err on the side of caution” is harming young people.
Young people who have been diagnosed with gender dysphoria – a sense of misery experienced by people who don’t identify with the gender they were assigned at birth – may be treated with “hormone blockers” which pause the bodily changes brought on by puberty. Butler et al explain that this treatment allows “further psychotherapeutic assessment to take place once the anxiety and distress related to the progression in puberty…are reduced or stopped.” This treatment “is prescribed … for a minimum of a year” before any further medical interventions will be considered – such as the use of cross sex hormones, which bring the body more closely in line with a young person’s experienced gender and which is understood, in adults, to be one of the only effective treatments for gender dysphoria (the other option, surgery, is never an option for children or young people in the UK). Based on the principle of “first do no harm”, this policy aims to protect young people from starting any treatment which causes irreversible physical changes until clinicians are absolutely certain that they are “genuinely transgender”, and not confused cisgender youth who will eventually come to regret physical changes to their bodies.
So far, so sensible: yet even the article itself exposes dangerous weaknesses in this argument.
It is important first to understand that the policy of “a minimum of one year on blockers” is applied across the board, in direct conflict with the service’s own written policies (Clinical commissioning policy 16046/P, page 16 https://www.england.nhs.uk/commissioning/wp-content/uploads/sites/12/2016/08/clinical-com-pol-16046p.pdf). For younger children, blockers can pause puberty and prevent physical changes such as a deep voice, facial hair or breast development, which make it difficult to ‘pass’ in their experienced gender later in life: so this treatment can prevent more dysphoric misery and the need for invasive treatments like surgery later on in life. However, the policy is also applied to older teenagers, young people who have already gone through these changes and are often in the grip of intense distress. To this group of young people (who, it should be remembered, have already been diagnosed as suffering from gender dysphoria) the policy is not experienced as a “treatment” in its own right but merely as a delay before they are allowed access to the only treatment which has been proved effective: cross sex hormones.
An academic article such as this one by Butler et al will naturally strive for an impartial tone. It may not be the best medium to convey the emotional state of a young person whose gender dysphoria is going untreated in this way. Sometimes statistics are quoted (and debated) on rates of self-harm, suicidal ideation and suicide attempts, but these come across as bloodless and dry when compared to the reality of this grenade in the path of a young person’s life.
Butler et al make it clear, however, that they are aware of two key elements in the lived experience this treatment policy enforces. Firstly, GIDS’ own data shows that the reason behind the policy – to allow time for psychotherapeutic intervention – does not stand up to scrutiny. They find that “the impact on reducing psychological difficulties is limited”. In other words, their own data shows that the policy of using “blockers” as a treatment does not appear to help much.
Even more importantly, they also know that hormone “blockers” when used without cross-sex hormones in mid to late adolescence “may well have effects on reducing energy and psychological well-being”. I can certainly attest to the truth of this, having watched my child suffer a ‘menopause’ during her last two years of schooling. Hot flushes and headaches were a constant source of discomfort and she kept falling asleep in class. Her psychological well-being was certainly “reduced” and her arms bear the scars of self harm. Her mood was too low, and her anger too high, for her to benefit from any psychotherapeutic interventions from the gate-keepers who were denying her the treatment she needed. Now that she has access to cross-sex hormones, she is starting to feel better. Butler et al are in fact aware that this treatment policy may well make a young person feel worse.
It seems then that GIDS’ own research chimes with my family’s experience: it is currently working from a treatment protocol which is at odds with its own commissioning policy, while holding evidence that it not only frequently fails to work but also runs a clear risk of making young people more unwell than they already were.
Butler et al comment more than once that ‘more research’ is required to explore this issue. Though I should welcome this statement, it only raises further concerns. Firstly, GIDS have had years of opportunities to collect evidence about this policy, yet as a service user I know for that no serious attempt has been or is being made to do so. As they state themselves, a kind of retro-active diagnostic procedure works best here: “a gain in confidence is the most important marker of the success of treatment”. Having seen the results of both “treatment” with blockers alone, and treatment with cross-sex hormones, I can certainly attest to that – yet at no time has any attempt been made to collect data from young people in England as they move from child to adult GIDS. Nobody has tracked anything like the full journey of the many young people and families in England who can compare at first hand the different types of treatment.
This is troubling enough: of even more concern, however, is the complete absence of any commitment to changing any policies in the light of research findings. GIDS already holds evidence that this policy is ineffective and often actively damaging, so to question its commitment to change even in the light of putative future research seems reasonable, particularly in light of the fact that this research is not in fact being undertaken.
On a personal level, I can never forgive the three-year delay which stole from my daughter the last of her school days and which let her sink lower and lower, leaving her with an even longer journey to both physical and mental recovery. No amount of data on suicidal ideation in trans teenagers can teach as much as a night spent lying across the threshold of your child’s door to keep them safe inside. There may well be something in the caricature of the angry, pushy, politicised parent whose trans child has become their “hobby” but I would like it to go on record that I, for one, didn’t start out like this. I started my journey as the parent of a trans child innocently trusting the experts: I now bitterly regret that my naivety cost my child so much pain.
The WHO now understands being transgender as a normal part of human diversity. Being trans – like being gay – has been depathologised and must no longer be understood as a mental health disorder. Combining this new understanding with the lived experience testified to by many trans adults who knew their identity from a very young age, it can be seen that trans children are also “normal”, and their existence is only to be expected: trans adults don’t just appear from nowhere. Yet there is still an assumption in the English GIDS that a period of dysphoric misery and distress is not only to be expected but may be a key diagnostic tool. Surely we can now do better than this?
I call on GIDS to adhere to its own written protocol and treat the length of time a young person needs to wait on blockers on a case by case basis, ceasing immediately its current blanket policy that every young person must wait for a minimum of a year on a treatment programme which GIDS itself agrees is ineffective and often harmful. I call on them immediately to undertake proper research which follows young people on their journey beyond the treatment they provide, and to act on the evidence they find. And I beg them to remember that withholding treatment is not a neutral act, and that they have a duty to do all they can to protect young trans people from harm.
The article referred to in this post is by Butler, De Graaf, Wren and Carmichael and can be found here: https://adc.bmj.com/content/103/7/631
Losing it: in Translation 