Difficult choices:

Kathleen and Brad, parents of a teenager with Asperger syndrome, were flummoxed when Jazzie (Brad’s nickname for his daughter), then 14, told first her school counselor and then her mother that she was trans and that she wanted to begin hormone therapy to physically transition to the female gender. Jazzie had been diagnosed with Asperger syndrome at age 3. Her parents, particularly Kathleen, had fought a seemingly never-ending battle with public school administrators and teachers to get her the legally mandated services and accommodations she needed.

From her parents’ perspective, Jazzie’s announcement came out of the blue. They were cautious about approving irreversible medical interventions such as hormone therapy, in the event that gender proved to be a passing fixation. “[Jazzie] never said, ‘I’ve been feeling this way for years,’ or that she’d felt like this since elementary school,” says Kathleen.

But for Jazzie, it felt like her parents were “being idiots” and refusing to trust her. She spent much of her 15th and 16th years feeling resentful. “I felt like time is running out, my body is destroying itself and you are not letting me fix it,” she says now, at age 18.

Jazzie began taking hormones and using a feminine name and pronouns her last year of high school, when she was 17. “It does feel to me like if I had started sooner, I would be more me. But now, since I started so late, it’s harder to physically become as I should be,” she says. “I’m more half-formed than I should be physically.”

Brad attributes Jazzie’s assumption that her parents should have known about her gender dysphoria to Asperger syndrome. The difficulty people with autism sometimes have understanding other people’s beliefs and emotions made it hard for her to grasp that her parents could not have known about something so clearly evident to her, even though she never articulated her feelings of gender dysphoria. “She felt like we should have known,” Brad says. “But we had to tease it out of her.” Having helped a colleague transition on the job more than 20 years ago, Brad was better informed than many parents about the process, but like his wife, he felt it best to proceed cautiously.

In retrospect, Brad and Kathleen can identify a couple of incidents that might have pointed to childhood gender dysphoria — such as the time they found Jazzie, then 6, under the bed wearing pantyhose. Kathleen then found that Jazzie had stashed her old pantyhose in a desk drawer, but she assumed that Jazzie wore them because they provided the same kind of sensory comfort as the compression suit she sometimes wore at school.

Meanwhile, Jazzie insists that she has experienced gender dysphoria since early childhood. “I felt like I wasn’t a guy,” she says now. “But it wasn’t until middle school that I started feeling super distressed about it.” She has been Googling words related to gender and its variations since she was 8 or 9, she says.

Once Jazzie’s parents were sure gender wasn’t a temporary obsession, they helped smooth her transition at school by speaking with teachers, guidance counselors and administrators. They already knew how to advocate for her; their experience with autism had prepared them for this new challenge.

The parents of 5-year-old Natalie are just embarking on that journey. Referred to the autism clinic at Children’s National when she was less than 1 year old due to developmental delays, Natalie exhibited signs of gender nonconformity from a young age. When their grandmother took the family on a cruise and provided miniature captain’s suits for all the kids to wear, her brothers strutted proudly around the cabin when told how handsome they looked. Natalie, then 4, burst into tears, saying, “I don’t want to be handsome, I want to be pretty.” That year, she insisted on dressing as Queen Elsa from the Disney movie “Frozen” for Halloween.

Natalie’s father watched these developments with foreboding. “I’ve known something was up since she was 1 and a half,” he says. Natalie’s choice of toys and fantasy roles, her style of play and her mannerisms all pointed in the feminine direction, even before she was able to articulate her gender identity in words. It disturbed him, he says: “I wanted her to be a boy.” For a year, the two battled it out, but faced with a deeply unhappy and recalcitrant child, “finally, I said, ‘Okay, be a girl.’”

Since then, Natalie has been much happier, he says. He and his partner are still working out the details of Natalie’s transition to her new name and pronouns at school, and wrestling with their own feelings about the challenges ahead. Making decisions on her behalf, and supporting and advocating for her in school and in the community, is more difficult due to the lack of data on outcomes for gender non-conforming children on the autism spectrum. “Right now, we’re just taking our cues from her,” her father says. “She is still trying to find her space.”

Although science provides little help to parents of children like Natalie right now, that may soon change. Until now, all of the published studies on the co-occurrence of autism and gender dysphoria have been incidence studies, confirming that the two conditions appear together more often than expected by chance. Hoping to move the science to the next level, Strang contacted all those who have published on the phenomenon, as well as experts at gender clinics around the world. For the past two years, this group has discussed their experiences and ideas online. The result is a position paper and set of initial guidelines for diagnosis and treatment supports for people with co-occurring gender dysphoria and autism spectrum disorders. This document will lay out best practices, perhaps preventing the kind of clinical misunderstanding that drove Kayden Clarke to despair.

Strang hopes the paper will be published within the next six months. “These kids need support,” he says.

In March, North Carolina legislators passed a law barring trans people from bathrooms and locker rooms that do not match the gender on their birth certificates. For trans people with autism, who are often socially naïve and unaware of how they are perceived by others, such laws present a very real threat of the kind of confrontation they are ill-equipped to manage. Strang’s group works to help the children and teens in their program deal with such challenging situations. “We focus a lot on safety,” says Strang, “what it means to be trans in different types of communities.” Autism can create blind spots around those issues, he says, but he and his colleagues also recognize its gifts, such as intense focus and concentration.

Grobman too sees those aspects of autism as integral to her effectiveness as an activist. Her intense focus on trans and disability rights may be an obsession of sorts, she admits, but unlike her childhood preoccupation with the game Pokémon, this fixation is not trivial. Living with the threat of being bullied, assaulted or arrested for using the ‘wrong’ restroom generates near constant anxiety. Grobman says she feels driven to work for the kind of social change that will make the world a safer place for people like Ollie, Natalie, Jazzie and herself. “We need to create an understanding of the validity of trans experience and autistic experience,” Grobman says. “You are fighting for your own existence.”

Ollie seems to share that belief. Immersed in the struggle between the Rebel Alliance and the Galactic Empire on his dining room table, he keeps up a running commentary that seems an oblique reference to the challenges he faces. “They need reinforcements,” he says. “This is the last squad of troops, and they are trying to survive.”