'Rapid Onset Gender Dysphoria' in Adolescents Stirs Debate

Becky McCall

September 13, 2018

A phenomenon unofficially referred to as rapid onset gender dysphoria (ROGD), where adolescents appear to rapidly develop gender dysphoria during or after puberty, has for the first time been explored in a descriptive study based on parental reports.

So-called ROGD has been observed mostly in girls, and the study itself has become the subject of escalating controversy and debate. Transgender communities have expressed outrage about the work, as they see ROGD as a denial of transgender affirmation, and there have been other complaints from academics related to study methodology.

Brown University School of Public Health, Providence, Rhode Island, the institution responsible for the research, withdrew their news release promoting the study and took down social media posts related to it. In addition, PLoS One, the journal that published the article online on August 16, is now conducting a post-publication re-review of the article to "seek further expert assessment on the study's methodology and analyses."

Sole author, Lisa Littman, MD, MPH, Department of Behavioral and Social Sciences at Brown University School of Public Health, is the first researcher to scientifically document observations related to the unprecedented rise in the number of teenage girls who suddenly identify as male during or after puberty.

She is trained in general preventive medicine/public health and obstetrics and gynecology.

In her first public comment for weeks, Littman told Medscape Medical News by email, "Since my paper was published, I have received emails from clinicians all over the globe telling me that this is what they are seeing in their practices, that these patient presentations are very different than what they have seen in the past, and they thank me for starting to research this topic."

"Courageous" Research in the Minefield of Transgender Medicine

In the article, Littman distinguishes ROGD from adolescent-onset gender dysphoria by describing ROGD as "rapid presentation of adolescent-onset gender dysphoria and gender dysphoria cases occurring in clusters of pre-existing friend groups."

Her conclusion notes that "the pattern of cluster outbreaks of transgender-identification in these friendship groups, the substantial percentage of friendship groups where the majority of the members became transgender-identified, and the peer group dynamics observed all serve to support the plausibility of social and peer contagion for ROGD."

Her survey also found a worsening of mental well-being and parent–child relationships and behaviors that led to teenager isolation from their parents, families, nontransgender friends, and mainstream sources of information, which she states is "particularly concerning."

Littman initially spoke to the press following the publication of her article, but then a firestorm erupted, with criticism directed against her from the transgender community and many academics. In the wake of this controversy, the journal's decision to re-review the methodology and the university's decision to withdraw their news release and any promotion of the study, she stopped giving interviews.

Now, she tells Medscape Medical News, "one might argue that this phenomenon only pertains to parent perceptions of their children. However, this atypical type of presentation is also being observed and documented by clinicians who evaluate and treat gender dysphoric youth."

As an example, she quotes a recent article by psychotherapists at the Gender Identity Development Services in the UK (Journal of Child Psychotherapy. 2018;44:29-46) in which they write, "this rapid onset of gender dysphoria in assigned females post puberty is indeed a worrying phenomenon we are observing more and more at the clinic."

Asked to comment, Jack Drescher, MD, Clinical Professor of Psychiatry, Columbia University, New York City, who was a member of the sexual- and gender identity-disorders working group for the Diagnostic and Statistical Manual of Mental Disorders , fifth edition (DSM-5), gave his views of the study to Medscape Medical News.

"It was courageous of her [Littman] to wade into a subject that many would perceive as controversial, [but] gender transition, particularly in minors, is a culture war issue making sober discussion around the subject difficult."

He also points out that it is too early in this area of research to know whether there is an actual phenomenon called ROGD, noting that he himself has not come across any cases of so-called ROGD in his practice.

"I don't think it presently qualifies as a diagnosis, but there have always been cases of adolescents who develop gender dysphoria who did not present as gender dysphoric before puberty; that is why the DSM-5 diagnosis is called gender dysphoria in adolescents and adults."

Joshua Safer, MD, is the executive director of the Mount Sinai Center for Transgender Medicine and Surgery, New York City, and a spokesperson on transgender issues for the Endocrine Society.

"I don't know if there is such a thing as ROGD — a phrase that applies to the parent might be legitimate but the term ROGD is a complete overreach and it is unfair to the field. We need to limit this to what the data show us only," Safer remarked.

Survey of Parental Opinion — No Children Involved

Explaining some of the background in the article, Littman writes that "the description of cluster outbreaks of gender dysphoria occurring in pre-existing groups of friends and increased exposure to social media/internet preceding a child's announcement of a transgender identity raises the possibility of social and peer contagion."

She added, "On the one hand, an increase in visibility has given a voice to individuals who would have been under-diagnosed and undertreated in the past. On the other hand, it is plausible that online content may encourage vulnerable individuals to believe that nonspecific symptoms and vague feelings should be interpreted as gender dysphoria stemming from a transgender condition."

Her study involved a 90-question online survey completed by 256 parents. The initial recruitment information and a link to the survey were posted on three websites where parents had reported adolescents with rapid onsets of gender dysphoria (4thWaveNowTransgender Trend, and Youth TransCritical Professionals). To broaden the reach of the recruitment, a technique called "snowball sampling" was used, meaning any person could share the information and survey link to any person or community where there might be eligible participants.

The adolescents and young adults who were described by their parents were predominantly girls at birth (82.8%) with an average current age of 16.4 years. Data on demographics, sexual orientation, friend groups and social media use, coping with emotions, child's mental wellbeing, and their relationship with their parents were sourced.

In her discussion, Littman notes that 62.5% of children discussed in the survey had been diagnosed with at least one mental health disorder or neurodevelopmental disability and many had experienced a traumatic or stressful event.

However, Drescher takes issue with the fact that the survey did not ask the opinion of the adolescents directly. "Whatever is happening with these children has not been directly or formally studied," he says. 

Other academics have pointed out that selection bias is an issue because survey participants were primarily sourced from targeted websites that question the nature of current transgender medicine.

Safer remarked that based on the evidence in the article, caution needs to be exercised in claiming existence of ROGD.

"Littman has actually written a paper about the anxiety of parents who question an open approach to transgender care and frequent sites that cast doubt on the current management approaches. No children were involved."

Littman acknowledges limitations, including those related to seeking parental input alone, but makes the point that targeted recruitment is not unusual in descriptive studies.

Nevertheless, she agrees more work is needed.

Littman told Medscape Medical News, "Although my research paper, as a starting point, only documents parental report, more research is needed to explore the experiences of the youth experiencing this type of presentation and the observations of clinicians noting significant changes in their patient presentations and demographics."

However, she stresses, "I have also received emails from several people who say that my paper describes their own experiences with gender dysphoria."

Transgender Push-Back and Freedom of Scientific Research

Following questions raised about the study design and data collection, Brown University explained in a statement, updated on September 5, why it had removed the article from news distribution, which it said was "the most responsible course of action."

This decision was not made because of the controversial nature of the topic, it stressed.

"The University does not know how long the re-review of the paper will take or what (if any) actions the journal will take."

The media office also points out that "Brown does not shy away from controversial research," and that "we've confirmed our long-standing support for members of the trans community."

PLoS One told Medscape Medical News: "While we are aware of the broad discussions the study has initiated on gender dysphoria in adolescents, our focus is the scientific review of those aspects that may impact the strength of the conclusions drawn within the specific framework of this study or that may warrant further clarification."

"To us the wide debate around this paper has indeed demonstrated that further research on gender dysphoria is important, and as a journal we continue to welcome robust and rigorous research in the field. This case is a priority for us, but at this point we do not have a time frame [for the re-review to be completed]."

Transgender activists universally reject the article by Littman, saying there is no evidence to support the existence of ROGD and expressing concern about the way that parents surveyed in the study were recruited.

In contrast, there is a petition to encourage Brown University to continue their research into the topic, which currently has more than 4000 signatures.

As well as practicing psychiatry in New York City, Drescher is a widely published author and has testified in legal cases concerning LGBT rights.

"Many transgender people do not receive adequate healthcare, which is a much larger social and policy issue, and an issue that does not get as much attention from the media as the issue of whether some people might be getting inappropriate care based on reports of their parents."

He adds that, because there are those who oppose all transition services for all transgender people, "it is not entirely difficult to understand why trans activists would perceive Littman's study as ammunition in the culture wars."

However, he added, "I don't believe that was Littman's intent."

At the same time, he firmly supports the nature of scientific inquiry. "The solution to unknown questions in science is to do more science, not shut down the inquiry altogether. If the study is criticized, so be it. That's the way science works."

When asked for their official position on the article, the Endocrine Society has taken none, but Safer, a spokesperson for the Society, said that it "is certainly a promoter of free and open scientific research."

Littman has reported no relevant financial relationships.

PLoS One. Published online August 16, 2018. Abstract

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