The stories we tell: Inspiring resilience in dysphoric children

Lisa Marchiano, LCSW is a psychotherapist and certified Jungian analyst. She blogs on parenting at Big Picture Parenting, and on Jungian topics at www.theJungSoul.com. You can also find her at PSYCHED Magazine and @LisaMarchiano on Twitter. Lisa has contributed previously to 4thWaveNow (see “Layers of Meaning” and “Suicidality in trans-identified youth”).

Lisa is available to interact in the comments section of this post.


In recent years, stories of young children socially transitioning have been increasingly common in the mainstream media.  Frequently, the focus is on the child’s preference for toys, activities, hairstyles, or clothing more typical of the opposite sex. Critics of these articles sometimes insinuate that parents merely need to reinforce that non-stereotypical toy and clothing choices are acceptable, and this will resolve the child’s distress. “Why don’t the parents just buy their son a doll instead of agreeing he is a girl because he doesn’t like trucks?” is a typical critical statement. But it is my belief that in some cases, such criticisms oversimplify the complexity and difficulty of situations in which a young child experiences severe dysphoria.

There are certainly cases where parents hastily infer that a child is transgender and ought to be transitioned based on non-sex-stereotypical choices on the part of the child, and these are troubling indeed. To take but one example, the mom interviewed about her nonbinary child in this BBC story was looking into blockers for her daughter partly on the basis of the child preferring pirates to princesses.

But closer attention to the details in some of these stories reveals a more complicated picture. For example, there are media stories about children who appear to despise their own genitals.  In this account, according to his mother, a little boy attempted to cut off his penis at age 4 with a pair of scissors.

Clearly, a parent facing a situation like this would want to seek out professional help, and might understandably conclude that the child is suffering from intractable dysphoria.  It’s worth noting, though, that the current trend in the US focusing on gender affirmation makes it difficult to consider alternate explanations for such distress in a child, including co-occurring mental health problems—or even more mundane explanations. See, for example, in this piece, the observations of a parent of such a boy, who discovered

…the importance of asking “Why?” Had I asked that when [my son] told me that he wanted to cut off his penis with a pair of scissors, who knows what I would have learned? But I didn’t ask because I thought I knew precisely what he meant. Applying an adult perspective, and my own views on gender, I immediately concluded that that remark was a rejection of his birth gender. But maybe he had a urinary tract infection and his penis was sore. Or maybe he had been wearing a pair of pants that he had outgrown and they were uncomfortable in the crotch. Or maybe having a penis made him feel like he didn’t fit in with his sisters and cousin, and he thought that if he looked more like them then they would all get along better instead of squabbling. Who knows. But we should at least have had the conversation. The same way we would if he had said “I’m sad” or “I’m angry.”

But setting aside for the moment alternative explanations for why a young child might want to mutilate his own genitals, it seems to me that in at least some cases where young children have been transitioned, these kids were experiencing a significant amount of distress over their sex. They may have suffered from a deep feeling of having been born “wrong.” They may have a powerful feeling of really being the other sex. They are likely subjected to significant social stress at school due to not fitting into gender expectations. The pain experienced by these children – and families – is very real and sometimes quite extreme.

I imagine it would be very difficult to be the parent of these children. One would have to bear with so many unknowns. Will the dysphoria resolve itself? If so, when? How? Will my child be subjected to bullying? How can I protect him or her? What if the dysphoria worsens? What will happen at adolescence? What is the right thing to do?

Above all, a parent in this situation would be subjected to the horrible reality of having to watch their child suffer each and every day.

Childhood Transition Solves Some Problems…

Although affirmation and social transition are frequently prescribed in todays’ activist climate, we do not have any good long-term evidence to support social transition among pre-pubertal children. The clinical practice guideline of the Endocrine Society recommends against doing so. The Dutch researchers who developed the use of puberty blockers also recommend against it. Nevertheless, I can certainly understand why social transition would be an attractive option for parents.

First, it would resolve ambiguity. One would know what course their child would be on, and could embrace the new reality and adjust accordingly, rather than have to tolerate the agony of not knowing. Consider for example the following excerpt from a 2013 story from The New Yorker.

One mother in San Francisco, who writes about her family using the pseudonym Sarah Hoffman, told me about her son, “Sam,” a gentle boy who wears his blond hair very long. In preschool, he wore princess dresses—accompanied by a sword. He was now in the later years of elementary school, and had abandoned dresses. He liked Legos and Pokémon, loved opera, and hated sports; his friends were mostly science-nerd girls. He’d never had any trouble calling himself a boy. He was, in short, himself. But Hoffman and her husband—an architect and a children’s-book author who had himself been a fey little boy—felt some pressure to slot their son into the transgender category. Once, when Sam was being harassed by boys at school, the principal told them that Sam needed to choose one gender or the other, because kids could be mean. He could either jettison his pink Crocs and cut his hair or socially transition and come to school as a girl.

Hoffman ignored the principal’s advice. She told me, “Are we going to assume that every boy who doesn’t fit into the gender boxes is trans? Don’t push kids who aren’t going to go there.” Still, as Hoffman’s husband said, “It can be difficult for people to accept a child who is in a place of ambiguity.” A kid with a nameable syndrome who requires a set of specific accommodations at school (recognition of a new name, the right to use the bathroom and locker room he or she wants to) is, in some ways, easier to present to the world than a child who occupies a confusing middle ground.

Above all, it must be extremely compelling as a parent to know that there are simple steps you can take that will resolve your child’s unhappiness in the short term. Many parents in these stories report that their child immediately become happier, more playful, and more joyful as soon as they were allowed to wear dresses full-time, or cut their hair short and choose a new name. It is hard to argue with what looks like success.

…And Creates Others.

While I have a great deal of empathy for parents who, in the face of their child’s overwhelming distress, decide to allow a social transition,  there are serious risks to doing so. As human sexuality researchers point out, every parent in this situation must weigh the immediate suffering that their child is experiencing against potential future suffering of regret or medical complications. There is accumulating evidence that Lupron may have serious side effects. Testosterone and estrogen may increase risks for heart disease, cancer, stroke, and diabetes. And of course, as has been pointed out even by gender specialists themselves, the child will become permanently sterilized if puberty blockers are followed immediately by cross-sex hormones.

What an agonizing choice. Such parents believe they can relieve their children’s distress for at least a while, but there may be real consequences down the road. There is very little evidence to help a parent make this decision. We simply don’t have good criteria for decisively determining which children will persist in a cross sex identification into adulthood. Though some gender therapists claim those who are persistent, insistent, and consistent will benefit from transition, the evidence we do have indicates that this is not a fool-proof criterion.

The second significant risk in facilitating a social transition among pre-pubertal children is that transition almost certainly increases persistence. If a five-year-old boy is “affirmed” that he is the opposite sex, and is addressed by a typically female name and pronouns by the adults around him, it is very likely that the child will be reinforced in his belief that his body is “wrong.”

Moreover, the surge of endogenous hormones at puberty rewires a young person’s brain in complex ways. It is likely these hormones and the changes they bring that in part account for desistance in the roughly 80% of children who grow out of dysphoria and come to feel at home in their natal sex. By blocking these pubertal hormones with Lupron, it is probable that clinicians and parents are setting the child’s cross-sex identification in stone.

The Stories We Tell

Therapists like to remind our clients that there is the thing that happened, then there is the story we tell ourselves about what happened. The stories we tell can make a huge difference in how we feel and respond to events–and the options we have.

For example, if a friend doesn’t call when she said we would, we could tell ourselves any number of stories about that. We might imagine our friend forgot. She’s been busy lately. We might call her instead, or we might move on with other things, intending to catch up with her later.

But what if we tell ourselves a different story? What if we decide that she probably didn’t call because she is angry? Or has decided she doesn’t want to be friends? Then we might find ourselves upset. We may experience a significant amount of unnecessary distress as we react to a situation that is mostly of our imagining. We might even make a choice – such as avoiding or confronting her – that might wind up bringing about the very outcome we feared.

A lot of what therapists do is help people to generate new stories that can maximize the potential for positive outcomes. Roughly speaking, there are two main criteria that make for good, adaptive stories. First, does the story more or less reflect reality? Second, does the story open up new possibilities for response?

Reality

Reality, of course, is sometimes a matter of opinion. It isn’t always possible to judge what is “real.” However, in general, those beliefs that do not line up with objective reality are often not very adaptive. If we believe, for example, that no one ever gets into college without straight A’s, we may feel as though our efforts at obtaining a university education are futile, and we will be more likely to give up.

An exception would be the coping strategy referred to as denial, which can be adaptive if it shields us from realities that are too harsh or painful to tolerate right now. However, even denial can be maladaptive, since it may encourage us to ignore or avoid important realities. Imagine, for example, someone diagnosed with cancer, who decides to forgo the recommended treatment of chemo and use ineffective herbal remedies instead.

Telling—or agreeing with–a child that she is a boy in a girl’s body doesn’t pass the reality test. It may be true that a child strongly feels she is the opposite sex. It may true that she feels very uncomfortable with her body, or the social roles ascribed to her. But to assert that she is really a boy is to deny objective, material reality. It sets a child up to manage massive cognitive dissonance, and to be at odds with her own biology.

We only have one body. Part of being a parent is teaching our children how to accept, love, and care for the one body they will have throughout their life. Believing that there is something fundamentally wrong with our body, such that it might require drugs and/or surgery to be corrected, makes it more difficult to accept and care for ourselves properly.

Options

A good story increases our options. Generally speaking, one story is better than another if it allows us to generate more possible ways to respond. Returning to the example of our friend who doesn’t call, if we believe she didn’t call because she hates us, our one option may be to sit home and feel miserable, sad, and angry. If we believe that she may be busy and perhaps she forgot, we have other options. We can call her right away. We can wait and call her tomorrow. We can decide we are tired of her being forgetful, and decide we aren’t going to call her until she calls us.

Having multiple choices increases our agency, and gives us an internal locus of control. Psychologists believe that developing an internal locus of control is one of the key variables that determines resilience. We experience ourselves as active participants in our lives rather than passive victims.

Affirming that a child is transgender is a story that reduces rather than increases options. If I tell a five-year-old that he is a girl in a boy’s body, then the choices become transition, or be miserable. The internet is quick to tell young people that their choice is to “transition or die.” Many parents who have decided to support social transition report that they believed they would either have “a dead son, or a live daughter.” When there are only two choices and one of those is suicide, then there really is only one choice.

In contrast, if the story we tell our child is that he has gender dysphoria, suddenly a range of possible options becomes available to us. We can support him in managing his distress. We can work to challenge rigid gender expectations. We can try to find him like-minded peers, and adult role models of feminine men. We can teach him self-soothing skills. We can work with the school to reduce bullying. And of course, the option to transition will still be there.

When Pharma Shapes the Story

Influential journalist and author Alan Schwarz convincingly traced the explosion of ADHD diagnoses to Big Pharma’s aggressive marketing of stimulant medications for the condition.

“A.D.H.D. Nation” focuses on an unholy alliance between drug makers, academic psychiatrists, policy makers and celebrity shills like Glenn Beck that Schwarz brands the “A.D.H.D. industrial complex.” The insidious genius of this alliance, he points out, was selling the disorder rather than the drugs, in the guise of promoting A.D.H.D. “awareness.” By bankrolling studies, cultivating mutually beneficial relationships with psychopharmacologists at prestigious universities like Harvard and laundering its marketing messages through trusted agencies like the World Health Organization, the pharmaceutical industry created what Schwarz aptly terms “a self-affirming circle of science, one that quashed all dissent.

Our children look to us, their parents, to help make sense of their experience – to know, in effect, what story they should tell themselves. The marketing messages of pharmaceuticals change the stories we tell ourselves and our children about their suffering.

When our toddler falls and bumps herself, she looks at us to gauge our reaction. If we reassure her that she is okay, she runs off and continues playing. If our face reveals fear and alarm, if we rush to her and ask worriedly whether she is all right, she is likely to burst into loud wails.

Before 2007, when Lupron was first used in the United States to block puberty for gender dysphoric children, kids who experienced even extreme distress over their sex were probably rarely socially transitioned. After all, the physical changes of puberty were inevitable. Before Lupron, there were very few “transgender children.” There were certainly gender dysphoric children, whose parents likely did the best they could to help their child navigate distress.

Lupron is a profitable drug. The drug’s manufacturer AbbVie reported making $826 million on Lupron sales in 2015. New off-label uses for the drug, such as helping kids grow taller or delaying puberty in gender dysphoric kids, have certainly provided new markets. The annual cost for Lupron for a transgender child can be around $15,000. The story that tells us we need to arrest puberty for dysphoric children or risk dire consequences directly benefits the pharmaceutical industry.

The treatments available to us shape how we conceptualize our symptoms. Pharmaceutical companies magnify this influence through marketing and hiring of physicians as consultants. As the image below shows, mentions of the term “transgender children” was nearly nonexistent in published books before 2000 – not long after the Dutch published their studies about using Lupron to block puberty. The mentions rise sharply around 2007 — the year Norman Spack began using Lupron for gender dysphoria at his clinic in Boston. Google’s Ngram had data available only through 2008. We can only imagine what the mentions must be like in recent years.

Marchiano ngram

With the ability to suspend puberty granted by the magic of pharmaceuticals, a whole new treatment pathway has opened. I fear that the temptation to take this route may be strong, even though there is little empirical evidence about where it leads.

Psychotherapists know that often, the answer to dealing with discomfort is to learn to sit with it. It must be excruciating as a parent to watch a child suffer with dysphoria. The temptation to end the suffering with a quick pharmaceutical fix must be immense. But I can’t help but think that at least some of time, it might be better to sit with this discomfort rather than reaching for a drug.

Having a young child with severe dysphoria presents an excruciating dilemma for a parent. I can’t say without any doubt what path I would choose, as I have not been faced with this very difficult decision. I do believe that those supporting these families ought to offer them honest information about what we do and don’t know, both about gender dysphoria, and the effects of transition.

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Insurance requirements are a “ridiculous” speed bump on children’s gender journeys

Yesterday, Johanna Olson-Kennedy, MD, one of the better known US pediatric gender doctors, railed against insurance companies who stand in her way. It seems they have the temerity to demand written evidence that her prepubescent clients are mentally prepared for the chemical blockade of their natural puberty.

The insurance companies also, inexplicably, want to see evidence that the children and their parents have actually agreed to this off-label (not FDA approved) and very expensive drug treatment.

johanna olson april 12 2017 eradicate gatekeepers

Olson-Kennedy wants WPATH, in its next Standards of Care (SOC 8), to “eradicate” the requirement that minors have some sort of psychological evaluation before embarking down the Lupron road (which leads in nearly every case to cross-sex hormones, as Olson-Kennedy well knows):

So, what a lot of people want to understand is, “If I give my child this blocker, can I take it away, if at the end of a certain amount of time they no longer have a trans-gender identity, or they don’t want to continue on to pursue a transition with cross-sex hormones.” The answer to that is, “Yes.” They are reversible. You can take them off without any problems or major medical problems. But it’s very rare that that happens. In my practice, I have never had anyone who was put on blockers, that did not want to pursue cross-sex hormone transition at a later point.

Olson-Kennedy is also no doubt aware of the growing controversy about Lupron and other puberty blockers, but that doesn’t seem to be a concern when it comes to insurance reimbursements.

This isn’t the first time Olson-Kennedy has publicly complained about the foot-dragging of insurance companies. Last September, she posted “unfounded” denial letters from insurance companies on the WPATH Facebook page–mostly having to do with the fact that puberty blockers have never been approved by the US FDA for use in chemically halting the puberty of healthy “trans” kids.

Johanna Olson complaining about blue shield sept 21 2016 cropped

Should insurance companies be in the business of paying for experimental treatments on children–some who (on Olson’s caseload) were actively suicidal? Take a look at these denial letters. Do gender doctors like Olson-Kennedy deserve this level of oversight?

Is my use of “experimental” warranted as an adjective–apart from the fact that, a full ten years after Norman Spack, MD first began to use GnRh agonists in his practice, these drugs are still not approved for this use by US regulatory agencies?

Take a look at these remarks by Rob Garafolo, MD, another top pediatric gender doctor, made in a PBS interview two years ago:

garafolo admits experimenting

Garafolo is referring here to the multimillion dollar NIH grant he, Olson-Kennedy, Spack, and others have received to study “trans kids.” He hopes to have more answers after, as Garafolo admits, the kids have been experimented upon for 5 years–and beyond. As he says, it’s an “imperfect field” and how these children will fare through a lifetime is “entirely unknown.”

 

Lupron: What’s the harm?

Worried Mom and her son, Worried Brother, co-wrote this post.  Worried Mom is an attorney who currently works in the non-profit area, and Worried Brother is employed in the pharmaceutical industry, with a background in chemistry.  This piece is sourced in the scientific literature; click superscripted footnotes to follow links.

For recent mainstream coverage about the potential harms of pubertal suppression, see here and here.


by Worried Mom & Worried Brother

Before we can have a sensible discussion about Lupron and its hormone-suppressing effects, it is important to understand what normal hormonal balance means in a healthy teenager or adult.

Normal body functioning requires a certain latent amount of testosterone and estradiol (estradiol is the major estrogen in humans).  Men and women both have some of these hormones naturally present in their bodies, produced by testes in men and ovaries in women.  Testosterone is involved in the development of muscle bulk and strength, the maintenance of proper bone density, the creation of red blood cells, the sleep cycle, mood regulation, sex drive, hair growth, and cholesterol metabolism.1,2,3  Low testosterone levels can lead to deficiencies in any of these areas.  For example, lack of testosterone can cause fatigue, insomnia, and interference with mood and sleep, together with a host of other impacts on, for instance, a person’s sex drive.

Like testosterone, estradiol is involved in the maintenance of proper bone density, mood regulation, skin health, and reproductive health.4,5,6  Lack of estradiol can lead to adverse impacts in those areas.  Because estradiol is a crucial component in maintaining bone density, individuals who lack sufficient amounts of estradiol will fail to undergo proper bone development, because the growth plates on the ends of the bones will never close.7  This profoundly alters the physical structure of the body.

Lower levels of estrogen are also associated with significantly lower mood.  The primary regulators of mood in the brain, according to our current understanding of neurochemistry, are the systems relating to the neurotransmitter serotonin.  Estrogen receptors are prevalent along the mid-brain’s serotonin systems, and they are believed to play an important role in serotonin-mediated behaviors such as mood, eating, sleeping, temperature control, libido and cognition.  Mice that are bred missing this particular sub-type of estrogen receptor show enhanced anxiety and decreased levels of serotonin and dopamine.8

As noted, both men and women naturally produce testosterone and estradiol in their bodies.  The levels of these hormones fluctuate greatly depending on the person’s stage of life.  At the start of puberty, a child’s body will begin to produce either testosterone or estradiol in much greater quantities than it had previously.  This increased production leads to the development of secondary sexual characteristics.  As men and women age, their levels of testosterone and estradiol also decrease, leading to well-known age-related effects, such as thinning bones and hair in both men and women.

A current focus in the treatment of transgender children and teenagers is to arrest, or delay, the impact of testosterone and/or estradiol in adolescence.  Arresting the impact of these hormones will prevent the development of secondary sexual characteristics.  Moreover, many clinicians recommend–if a child or teen is unsure as to whether he or she wishes to become a transgender adult–that the administration of so-called “blockers” will “delay” puberty and “buy time” for the teen to make a more informed or mature decision.  Theoretically, a teen could always desist from taking blockers and then normal puberty would ensue, although there is very little data in this area.  It is also currently unknown whether, if a teen takes a puberty blocker during what would otherwise have been his or her normal puberty and then stops, whether puberty will proceed entirely as normal or whether there will be some other effects from having delayed it for a period of years.  The “puberty blocker” discussed in this article is leuprolide acetate, better known by its trade name Lupron.

What is Lupron?  Lupron is a gonadotropin-releasing hormone analog.  The primary pharmacological effect of Lupron administration is a decrease in the concentrations of testosterone and estradiol throughout the body.9,10  How does it achieve this decrease?  It does so by tinkering with a hormonal feedback loop between the hypothalamus and the pituitary gland, and interferes in the release of gonadotropins (“Gn”), which is a catchall term for 2 separate hormones, luteinizing hormone (LH) and follicle-stimulating hormone (FSH).  Gn acts as the primary means by which the body controls the release of testosterone and estradiol.  Gn interacts with the tissues that are involved with the release of these two hormones.  It stimulates specialized tissues in the ovaries and the testes to produce testosterone and estradiol.  LH stimulates the Leydig cells in the testes and the theca cells in the ovaries to produce testosterone11.  FSH stimulates the spermatogenic cells in the testes and the granulosa cells in the ovarian follicles (the granulosa develop to produce a layered structure around the egg), as well as stimulating the production of estrogen by the ovaries12,13,14. There are Gn receptors embedded in the cell membranes of these tissues and binding with Gn results in those tissues producing the hormones.  The hormones are released into the bloodstream, and travel to specialized receptors that are located systemically, in most major tissue groups.  The systemic distribution of these receptors is responsible for Lupron’s effect on the entire body.

The hypothalamus releases GnRH (Gn-releasing hormone) which binds with GnRH receptors on the pituitary gland15.  The hypothalamus responds to the concentrations in the blood of testosterone and estrogen, as well as the presence of Gn16,17.  Since Lupron is chemically similar to GnRH, it is essentially repeatedly stimulating the GnRH receptors on the pituitary gland.  This artificially high activation of these receptors desensitizes the pituitary gland to the presence of GnRH18.  There is an initial flare-up of Gn release in response to the presence of the Lupron, but it eventually results in down-regulation or deactivation of these receptors19.  In physical terms, this means that the pituitary, in an effort to restore normal functioning, will cull the number of GnRH receptors.  This results in a significantly lowered response to a given concentration of GnRH in the blood. Why is this?

This is the key point, because the strength of an organ or tissue’s response to any drug is directly proportional to how many receptors are activated by the presence of the drug.  So, using this idea, lower the number of receptors, lower the response, and if there is an absolutely lower number of receptors present, there is an absolutely lower potential response20.  Once the drug is removed from the body, the pituitary is left in a desensitized state, rendering it unable to respond to ‘normal’ activation by GnRH.  This results in decreased production of Gn, which in turn means decreased production of both testosterone and estradiol in the tissues with which Gn would normally interact.

Lupron use in otherwise normal teenagers to delay puberty is both relatively new and off-label.  Lupron does have a history in treating a condition called ‘precocious puberty,’ which is what happens when a child’s body enters puberty too quickly for his or her age.  However, this is a clinical condition typified by concentrations of sex hormones deemed wildly abnormal in the course of normal development.  As such, the usage of this drug may be more appropriate in  these particular individuals, because the marginal benefit of leaving this condition untreated is higher than it would otherwise be. Any competent medical professional would not generalize from outcomes observed in a population of individuals affected by abnormal hormone levels, to individuals with normal hormone levels.

Industry standards21 judge the usage of Lupron in treating gender dysphoria as providing at best no proven benefit and hold that there is an insufficient quantity of published evidence to prove its safety for this purpose.  UnitedHealthcare, the nation’s largest insurer, makes its stance clear on Lupron for usage in treating gender dysphoria on their Drug Policy page:22

‘Hayes compiled a Medical Technology Directory on hormone therapy for the treatment of gender dysphoria dated May 19, 2014.  Hayes assigned a rating of D2, no proven benefit and/or not safe, for pubertal suppression therapy in adolescents. This rating was based upon insufficient published evidence to assess safety and/or impact on health outcomes or patient management.’

A D2 rating is the lowest rating possible on that particular institution’s scale of safety and efficacy.  The Hayes Technology Review is considered to be the industry standard in linking treatments with patient outcomes.

In Lupron’s case, the vast majority of clinical data is found in samples of middle-aged or older men with late-stage prostate cancer.  This means the aggregate of the medical community’s understanding of Lupron’s safety profile relates to its use in this context, in terms of both the condition it is meant to treat and the individuals for whom it is approved.  When using Lupron as a “blocker,” medical professionals are, in both senses, treading untested waters, for the dual reason that it is not approved or recommended to “treat” this particular condition, and clinical studies relating to its long-term or even short-term safety in treatment of gender dysphoria are vanishingly rare.  To further illustrate this second point, the population to whom Lupron is most commonly prescribed on-label, middle-aged and elderly men, has a much shorter life expectancy from the date of administration than do teenagers.  In other words, based on the current state of research, one would not expect to see data collected from groups who are 40, 50 or 60 years “out” from administration.

Putting together what we know about how the body normally reacts and develops during puberty with what we know about how Lupron works, we can conclude the following: administration of Lupron to young people for the purposes of blocking puberty is a disruption of a delicate hormonal balance that has the potential to cause adverse health effects.  The risk is further compounded by the off-label usage of the drug for this purpose, as well as the lack of long-term data related to safety.