Earlier this year, police in Arizona killed Kayden Clarke. The officers were called to Clarke’s house after neighbors reported that he might be about to commit suicide. According to the police report, the officers opened fire when Clarke approached them with a knife. Friends and family members of Clarke have said they don’t believe Clarke posed any such threat.
Clarke was a trans man who had autism. He was well known for documenting his mental-health struggles in homemade YouTube videos, which he also used to regularly detail the difficulty of finding medical professionals willing to help him with his transition. After his death, the Autistic Self Advocacy Network, a non-profit disability-rights organization, said in a statement that Clarke had experienced multiple “roadblocks to transition” and encountered numerous health-care professionals who failed to “respect either his gender identity or his Autistic identity.” Clarke’s therapist, for example, the statement says, “would not approve his starting on hormones until after his autism spectrum disorder—which she referred to as a ‘disease’—was ‘cured.’”
The statement outlined the uphill struggle that people with autism face when it comes to transition-related care, highlighting how hormone therapy and other medical assistance is often deemed redundant, or dismissed as an obsessive trait or part of a “strictly autistic profile.”
Research on the overlap between autism and gender diversity—a term used to define those who, either by nature or choice, do not conform to conventional gender-based expectations—is a relatively new field. Earlier this year, Spectrum, a website dedicated to in-depth analyses of autism research, published an extensive investigation that explores this relatively untrodden ground, explaining that over the past five years, there have been only a handful of studies that trace a co-occurrence between the autism and gender diversity. In one of the first major studies, carried out in Holland, researchers examined 204 children and adolescents who identified as gender-dysphoric—a condition where a person experiences discomfort or distress due to a mismatch between their biological sex and gender identity—and found a 7.8 percent prevalence of autism.
Researchers in the field have speculated about the reasons behind this co-occurrence, but the social and cultural implications of this correlation are proving problematic for trans, autistic communities. Some health-care professionals are now telling trans individuals on the autism spectrum that the need to transition is a result of their autism—a classic misreading of causation versus correlation. And, as in Clarke’s case, the mistake appears to be limiting access to medical care.
* * *
The way that the relationship between gender diversity and autism is perceived stems from autism’s gendered history. The disorder has long been referred to as a predominately male condition—think of the portrayal of Raymond in Rain Man as the male, autistic savant. More than a decade ago, Simon Baron Cohen, the director of the University of Cambridge’s Autism Research Centre, hypothesized that autism was a symptom of the “extreme male brain.”
Defining autism in this way has led to issues with the diagnosis of women and girls. In 2009, a survey found that 1.8 percent of men and boys in England had a diagnosis of autism, compared to 0.2 percent of women and girls. However, recent studies speculate that many women and girls with autism are never referred for diagnosis, and so are simply missing from statistics, even though they could equally be in need of support. Since this 2009 survey, the National Autistic Society’s Lorna Wing Centre for Autism, in the United Kingdom, has placed an emphasis on the different manifestations of behavior in autism as seen in women and girls compared with men and boys, and it has seen a steady increase in the number of women and girls referred for diagnosis.
While this shift has ensured many cisgender women are now finding diagnoses, approaching autism in strictly male/female terms has still largely excluded gender-diverse people from the conversation.
There are case studies of gender diversity on the autism spectrum dating back to 1996, but the first study to assess the convergence of autism and “gender dysphoria” was published just six years ago. Since this point, there have been several studies, with a watershed moment occurring for the world of autism research in 2014. John Strang, a neuropsychologist in the Center for Autism Spectrum Disorders at Children's National Medical Center, in Washington, D.C., assessed gender diversity in children with autism, rather than measuring the incidence of autism among gender-dysphoric children and adolescents as the previous studies had done. The study found that participants on the autism spectrum were 7.59 times more likely to “express gender variance.”
This was a turning point in the field, but it hasn’t necessarily ensured an easy explanation for the co-occurrence between gender dysphoria and autism. The Spectrum investigation outlines the various theories researchers have offered. One suggests that children with autism form a “fixation” with their gender identity. Since people with autism often have obsessions with particular topics, identifying as gender diverse could be seen as an “obsessive” relationship to gender, similar to the classic autistic obsessions with things like cars or dinosaurs.
Other researchers have offered a biological connection, speculating that both gender development and autism are influenced by differences in the levels of the hormone androgen that a fetal brain is exposed to. And some have pointed to the fact that children with autism are often considered less inhibited by social maxims, including ways different genders are supposed to stereotypically behave. People on the spectrum who express a gender identity that doesn’t conform to their assigned biological sex can be seen as doing so because they’re refusing expectations society has placed on them.
* * *
However, these possible explanations are reflected negatively in conversations I have had with neuro and gender-diverse individuals, who have often been told that identifying as gender-diverse is a result of being autistic. A large handful of people I have spoken to discuss how they have felt dismissed by the medical community.
“In a mental-health facility for children, a nurse practitioner who was extremely patronizing questioned me for hours on why I liked ‘labels’ so much when we're all human,” says Nickie, a trans man on the autism spectrum from Louisiana. “He then proceeded to ask me to write an essay to why I liked labels so much and to ‘dig deeper’ for the reasoning for why I identify the way I do.”
Nickie, who asked not to have his last name included in this article out of concern for his safety, says that experiences like his are precisely why “autism should have no gender.” Because there are boys, girls, non-binary people, and others with autism on the spectrum, “framing autism as heavily associated with one gender hurts other gender groups,” he argues. “Not only is it unfair and unrealistic, but it would solve so many people from grief in the future.”
In the report from the Autism Self Advocacy Network following Kayden Clarke’s death, people gave accounts of being subjected to “normalization” treatments by service providers and family members, which aimed at suppressing their gender expression, or placing them in guardianship or institutional settings that restrict their decision-making power. Similarly, Stella Gardiner, a trans-rights activist in London, informed me that after she had a positive experience with a psychiatrist who diagnosed her autism, the treatments that were recommended to her were blocked by her general practitioner, who informed her that her diagnosis from a psychiatrist, not a medical doctor, was “worthless.”
Researchers and scientists are now beginning to look for further reasons between the co-occurrence, as well as exploring new methods to ensure the path to treatment and care is easier.
So far, as Spectrum reports, almost all of the published studies that explore the relationship between autism and gender diversity have simply been “incidence studies,” illustrating that autism and gender diversity do in fact somehow appear to be linked. Yet over the past two years, John Strang has assembled a group of researchers and experts at gender clinics across the globe to create a seminal paper that outlines guidelines for diagnosis and treatment for people across the gender and neurological spectrums.* This position paper, Strang tells Spectrum, focuses heavily on safety and “what it means to be trans in different communities,” and establishes clinical “best practices.”
Beyond research, numerous organizations are beginning to push for a greater awareness of issues related medical care, including campaigns like #AutisticTransPride, neurodiverse-and-trans-awareness blogs, and the work of activist groups like ASAN. In an essay for the Asperger/Autism Network, an organization that provides support for people on the autism spectrum, the activist Lydia X. Z. Brown suggests the term “gendervague” to express an inseparability of gender identity and neurodiversity. “Being autistic doesn’t cause my gender identity,” Brown writes, “but it is inextricably related to how I understand and experience gender.”**
* This article originally stated that this position paper has yet to be published. We regret the error.
We want to hear what you think about this article. Submit a letter to the editor or write to email@example.com.