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A new set of guidelines aims to help clinicians recognize and treat gender dysphoria in adolescents with autism1.
The guidelines, released 24 October, recommend that teenagers seeking treatment at gender clinics be screened for autism, and that those with autism be assessed for gender concerns. Autism clinicians have been awaiting the recommendations, which also reflect expert opinion on the co-occurrence of the two conditions.
People experience gender dysphoria when their biological sex and perceived gender do not match. Some studies have reported that people with autism show higher-than-expected levels of gender variance2. Likewise, the prevalence of autism among transgendered individuals is higher than in the general population3.
“Many of these kids coming to our programs are not just over-focused in an autistic sense on some aspect of gender — this goes deeper,” says John Strang, a pediatric neuropsychologist at Children’s National Health System in Washington, D.C. “You need to listen to them and tailor medical approaches to meet their needs without expecting them to conform or fit into a box of typical gender.”
Strang created the guidelines in collaboration with 22 specialists in fields such as pediatrics, psychiatry and endocrinology. Most of these experts agree on the basic tenet of reciprocal assessment and screening. They also concur that some children with autism experience a sense of gender outside the male-female binary.
Autism specialists who see many young people with gender concerns say they are relieved at finally having a set of guidelines to inform their practice.
“We were relying on best practices for autism spectrum disorders alone, and that’s not sufficient,” says Audrey Blakeley-Smith, associate professor of psychiatry at the University of Colorado School of Medicine, who was not involved in creating the recommendations.
The ‘right’ hormones:
The Endocrine Society, an international association focused on endocrinology and metabolism, recommends hormone treatment for adolescents with persistent gender dysphoria who have no unaddressed psychiatric conditions and who can understand the outcomes of the treatment4. The treatment, which typically starts around age 13, involves puberty-blocking hormones that halt the development of secondary sex characteristics.
The effects of these hormones are reversible. But if gender dysphoria persists, around age 16, teenagers can begin taking a new set of hormones that align their bodies with their perceived gender.
The new guidelines affirm the rights of individuals with autism to receive treatment for gender dysphoria, but the experts disagree on the best time to initiate treatment. Some say adolescents with autism and gender dysphoria should try living as their perceived gender on at least a part-time basis before beginning hormone treatment. They might, for example, change their name or wear clothing that matches their perceived gender at home or in the community.
Others say this approach would create difficulties for young people with autism, who may feel they need “the right hormones in their body” before living in the corresponding gender, Strang says. Young people with gender dysphoria who are not on the spectrum tend to be less insistent on the need for hormones before transitioning socially to their perceived gender.
The guidelines acknowledge that adolescents with autism, many of whom have trouble planning for the future, need ongoing support in discerning their gender identity, exploring the implications of living as another gender and making decisions about medical treatment. This process may take a little longer in young people with autism. Their parents, too, may be concerned about moving forward too quickly. “We are not closing doors, but we are also not rushing into treatment,” says Strang.
Blakeley-Smith says one in four people who come to her autism clinic are young adults with gender dysphoria who say they are on the spectrum. She also sees young adults that she diagnosed with autism as children come to the clinic years later with concerns related to gender dysphoria. “I think this is a severely underserved population,” she says.
Other experts say a fixed gender identity may take longer to develop for individuals with autism than it does for typically developing youth5. As a result, they say, many teenagers with autism who do not conform to gender expectations or who have a fluid gender identity may ultimately accept their birth gender.
“My concerns are less about the guidelines and more about the research used to substantiate the idea that gender dysphoria is more common in autism,” says Gerrit I. Van Schalkwyk, clinical fellow in child and adolescent psychiatry at the Yale Child Study Center. “My argument is you need to understand the normal course of gender development for people with autism first.”
Strang says he hopes that ongoing collaboration between autism and gender experts will help determine how often gender dysphoria and autism co-occur and guide clinicians to meet the needs of those with both conditions.