Nearly a quarter of young persons diagnosed with gender dysphoria, or transgender, screened positive for Asperger's syndrome, a form of autism, according to a new paper in the academic journal LGBT Health.
The study was a small retrospective review of intake files of 39 children at Boston Children's Hospital. Lead author Daniel E. Shumer explained, "We found that 23 percent of kids fell into the possible, likely, or very likely category when using the evaluation tool to screen for Asperger's."
Asperger's is a term that has been used to describe "higher functioning" autism spectrum disorder, or kids that have elements of autism spectrum disorder but are still able to communicate and have social interactions, he says. Some persons with Asperger's have become particularly adept at writing computer code.
The findings complement a 2010 study from Amsterdam that used more rigorous diagnostic criteria for autism in evaluating 204 youth at a clinic for gender dysphoria. It found that 7.8 percent of those children also met the criteria for having autism; that compares with an autism rate of 0.6 to 1 percent that other studies have found in the general population.
John Strang looked to see if the reverse was also true. He examined records of 1,605 children treated at Children's National Hospital in Washington, DC, in a paper published in 2013, and found that 5.4 percent of the parents of children with autism and 4.8 percent with attention deficit hyperactivity disorder ( ADHD ) also reported gender variant behavior in their child.
"Having autism is a burden; a lot of things in the world change when you have autism," said Strang. "But adding transgenderism, or maybe some of them aren't transgender but they are just exploring gender, that is complicated in itself."
He anticipated that dealing with both issues might increase the level of anxiety for these kids. But it turns out, that was not always the case.
Often the kids with autism "weren't really noticing the social expectations or the social biases as much as someone without autism," said Strang. "They were less anxious about the trans piece, they were less worried about what people thought," and more accepting of their own sense of identity.
But at the same time, having both conditions adds another layer of complexity. He says, "Knowing how to navigate in a world that is not really friendly with people who are trans can be tricky when you are missing social cues."
Shumer said it is important that parents and medical providers be aware of the increased possibility for co-occurrence of autism and gender variance. If treating patients for one condition, they should screen for the other and be prepared to treat it.
"There also may be implications for how to provide informed consent for things like hormonal interventions," he added.
Strang said he shares those concerns. He has been working with others to develop recommendations on how to best address the needs of people dealing with both autism and gender dysphoria. They hope to publish that paper later this year.
[Editor's note: Windy City Times asked Scott Leibowitz, MD, an attending psychiatrist at Ann & Robert H. Lurie Children's Hospital of Chicago, about his impression of the findings.
He said, "First, it's important to contextualize these findings. When a study uses a set of screening questions instead of a more formal diagnostic interview, the rates of a particular finding are much more likely to be higher than actually do exist in the population. That said, based on the Amsterdam study ( which did, in fact, use a diagnostic interview ), there does seem to be a bona fide increased rate of Asperger's disorder among transgender individuals than in the general population."
However, he added, "I would caution the public from over inferring the importance of this. This does not apply to a large majority of transgender individuals. The relevance only matters when trying to help the individuals who are both transgender and Asperger's, as their transition-related needs may differ from other transgender individuals. They may need more support around detecting social cues related to safety and understanding how their gender identity and expression adapts within the society that they live."
In addition, Leibowitz said, "It's also important that mental health providers not overly rush to a diagnosis of Asperger's disorder in the transgender population simply due to a person having challenges with social interactions. ... Lastly, as with all individuals, it's important not to assume that these aspects of life define the very essence of who they are. Like with everyone else, transgender youth who are Asperger's have many other facets of their identities that need nurturance and support from their families, peers, and schools."]