Follow the Science: Surveys show recent cohort of ROGD boys is different

By Donna M.

Back in 1992, the “feel bad” movie of the year was called Lorenzo’s Oil. Based on a true story, this film followed the struggles of a couple battling to find a cure for their son’s adrenoleukodystrophy. Desperate for information and ideas, they turn to doctors and scientists who rebuff their efforts: they are told there is no effective treatment, and to prepare for his death. Undaunted, the parents badger the scientists, track down scarce studies, and organize meetings until they discover a potential cure: a special oil. Thanks to the parents’ efforts, this oil extends the life of their son and helps other children with the disease. 

Much as I admire Susan Sarandon’s hair, I never wanted to re-enact this movie. But sometimes life imitates art.

In June 2020, during a dark phase of Covid pandemic, our then 15-year-old son announced to my husband and me that he thought he might be trans. This was not just out of the blue, but out of character. Like any parents, we told our son we loved him, then started to dive deep into the existing research on trans-identified teens. Quickly, we realized that high-quality studies on the topic were thin. The popular “affirmative model” of treatment was based on a protocol developed for people who had had persistent gender dysphoria for years since childhood, not teenagers who suddenly developed it out of the blue. My son seemed to better fit Lisa Littman’s description of “Rapid Onset Gender Dysphoria.” Affirming and reinforcing a false belief that my son was actually a girl inside seemed like a bad idea.

In late 2020, I joined a group of parents of trans-identified teenage sons to offer each other support and share resources. Since then, our group has grown to around 110, with members from Europe, North America, and Australia. As we shared our stories, it became clear that our sons shared significant common characteristics. Many of them were smart and quirky and isolated. Their histories and presentations of gender dysphoria were strikingly similar, too. None of them were gender-non-conforming as children. Many of them were sexually delayed and had suffered a recent social rejection. They all made their big announcements out-of-the-blue as adolescents. 

To get a better sense of these patterns, I developed three surveys to measure how frequently these issues were present in our kids. These surveys were conducted between January and May, 2021 through survey monkey. While this study is not a formal, scientific one, it does gather evidence of some striking patterns within the cohort of male “Rapid Onset Gender Dysphoria” adolescents. Some of the significant findings:

  • These boys are extremely bright. In our first survey, 44% percent of our boys were gifted (IQ 130-145, n=32/73), 19% were highly gifted (IQ 145-160, n=19/73), and 15% were profoundly gifted (IQ>160, n=11/73). Our second survey asked for precise IQ numbers, and found the average IQ to be 140 (n=19, range 126-175). This appears to be quite different from the historical childhood-onset cohort

  • These boys are socially awkward and quirky. There is a high rate of Autism (21%), Autism-like behaviors (29%), and poor social skills (39%).  40% have ADHD. 

  • These boys were suffering mental health issues before their trans-identification, and their mental health declined. 73% were suffering anxiety, and 60% were suffering depression in the six months before they announced they thought they were trans. In the six months after announcing, their mental health declined: 86% suffered anxiety, and 77% depression.

  • As identified in previous studies, issues of trauma appear to be a factor. Over 20% of the boys have suffered a major trauma such as the death or illness of a parent or sibling. 13% have suffered a major upheaval such as a move. 

  • Social contagion appears to be at play. 42% of the boys announced after a close friend announced.

  • Internet exposure appears to be a factor. 96% of the boys were exposed to pro-trans websites.

  • Sexuality and sexual behavior appear to be a factor. 27% of the boys demonstrate discomfort with their sexuality. 57% percent are possibly gay or bisexual. 80% have never kissed anyone. 

  • Around 50% of boys announce within 6 months of first considering they are trans. Another 24% announce within 6-12 months. These boys themselves acknowledge and are aware that this is “Rapid Onset,” and that they did not have these feelings in childhood.

  • Trans identification and behavior appear to be loose, inconsistent, and fragmented. Within the boys, though a great majority (85%) have announced to their parents, only 46% have announced to all their siblings, and 24% to their extended family. Female clothing behaviors (at home 32% vs at school/work 27%) generally lag behind female pronoun requests (at home 64% vs at school/work 27%). 

  • ROGD can dissipate. 42% of the boys have had period of desistance that last at least 2 weeks, and 7% are presently desisting for 6 or more months. As our support group serves families whose sons are actively claiming trans identity, it suggests that the families who have sons who desist would not be engaged in our group or taking surveys.

 A few additional notes:

  • Though we have not measured it through surveys, our families appear to be generally highly-educated and savvy consumers of health care information. Parents include doctors, nurses, researchers, lawyers, and other professionals who read the studies behind the headlines, and then read the footnotes behind the studies. We tend to be skeptics and “free thinkers.” This behavior mimics the high intelligence of our sons.  

  • Though politically and religiously diverse, our families tend to be “liberal thinkers” in the traditional sense of the phrase, and particularly inclusive in our general attitudes and behaviors. We have gay couples, and families with gay and trans siblings. We are not bigots.

  • Generally, our families follow a “supportive but not affirmative” model. We have offered unconditional love, emotional support, and continued financial support to our sons. No one has shamed or kicked their son out of the house. Some of us agreed to pronoun changes and minor social transitioning. A few of us have sons who are on hormones. However, most of us have consistently communicated that the trans identification does not seem to match our son’s past or present behavior, and have firmly stated our opposition to hormones or surgery. We have self-selected away from “gender clinics” and recognize that we may represent a different type of family or presentation of child than those that go to gender clinics. 

  • We have all struggled to find appropriate psychological therapy for our sons. There are very few therapists who will engage in deeper analysis with our sons about their underlying issues, as most just follow a blind “affirmation” model. There are very few therapists who have experience working with profoundly gifted, autistic, anxious, depressed boys with ROGD. Finding one who connects with a son like this is particularly challenging. Most of our families are muddling through with minimal therapeutic support. Many of us have stories of therapists who mislead us about their approach, and our trust in the field is eroding. 

  • We are aware of a possible connection between SSRIs and the development of gender dysphoria in some of our sons. We are also aware of a connection between online “sissy porn” and anime porn and the development of gender dysphoria in some of our sons. These topics deserve more attention.

  • We suspect that social anxiety and isolation lie at the root of gender dysphoria for many of these boys. High-IQ, autistic, ADHD boys are all social outcasts. Puberty further highlights their differences. We suspect that gender dysphoria and a trans identification may be unhealthy attempts to find a community. 

  • Some of our boys struggle with eating disorders, and we suspect there may be a connection between these mental health issues. Some of our boys have undergone a severe mental health crisis. The health community’s knee-jerk diagnosis of gender dysphoria and fast-track to treating it with hormones fails to serve these other sons. Our families need a more thoughtful, nuanced, and flexible model of treatment for our sons.

Research on this topic is severely hobbled by both political and practical reasons. Researchers who have attempted to study this issue have been called transphobic, forced out of their positions, publicly heckled, and had their funding pulled. Practically speaking, there is no way to ethically run a hormone study on trans-identified children (some get hormones, some get placebos, some get none). It is also impossible to run a formal study on children who never present to gender clinics

Clearly, a teenager who has had gender dysphoria since childhood is different from a teenager who suddenly developed it at puberty, and it is time the medical field acknowledge this different presentation. This recent cohort of trans-identified boys appears to be smarter, more anxious, more depressed, more sexually delayed, and have higher rates of Autism and ADHD than previous cohorts. We hope this informal study can spur additional research and conversations. Like Lorenzo’s parents, we know there are answers out there – and we won’t stop looking until we find them.