Q&A with Kathy Koenig
When Kathy Koenig started working with the clinical research group at Yale University, in New Haven, Connecticut, 20 years ago, she noticed that girls who had signs of autism were often overlooked. Boys and girls would often have the same level of social impairment. But because boys tended to be more disruptive at home and at school, their behavior problems were more apparent — and more readily diagnosed. Koenig made it her mission to catalogue the unique aspects of autism in girls, eventually launching the Initiative for Girls and Women with Autism Spectrum Disorders at Yale. The program aims to fill a gap in autism services by providing girls with autism with social and recreational activities. Koenig talks with SPARK about the challenges of diagnosing girls with the disorder and some creative ways to enhance social skills.
Why is it more difficult to diagnose girls and women with autism?
Even in typical development, girls and women socialize differently than boys and men. Girls with autism have social impairments, but those impairments might not look as pronounced or might look different from social impairments in boys. There is an increasing awareness in the field that girls, who are a minority population within the ASD community, might have a different presentation of the disorder and might be underdiagnosed. Parents of girls with autism have banded together and demanded more services.
How does intervention differ for girls and women with autism?
I’m not sure there’s been a huge amount of research into that question thus far. The intervention I do is based on the view that we need to target the way girls and women speak to each other and socialize. This is different from the way boys and men speak to each other and socialize. The girls I work with are lonely for friendships and intimate relationships. They don’t know how to develop those relationships and have to learn a bit more about how typical girls and women do that.
Among typically developing children and teens, girls are much more likely than boys to talk about interpersonal topics when relating to each other. Middle school girls and young women talk a lot about how they are feeling, how things are going with a friendship or boyfriend. Girls with autism are not very adept at that kind of conversation. They find it difficult to develop friendships because it’s hard for them to understand those topics. I work with girls on the spectrum to understand how typically developing girls think and speak about themselves. I’m not trying to convert them; I’m trying to interpret for them and help them understand.
What kinds of social activities would you promote for girls and women with autism?
It’s not so much the type of social activity; it’s really any social or recreational opportunity that allows girls to get together and share thoughts, feelings and interests and develop the ability to have a community. Rene Jamison at the University of Kansas Medical Center runs a program called ‘Girls Night Out,’ a social skills program [where girls with autism practice social interactions.]
In my program at Yale, we also have a girls’ night out program, we do an art class at a museum, and we plan to start a photography class for tweens. In all those different activities, I encourage the girls to talk with each other and to learn to enjoy being with other people. It’s about crafting the activity to promote interactions. We are in the third year of our art classes, where I have anywhere from 8 to 14 teenage girls, all on the spectrum, sitting together in the classroom. They get to choose the music they want to listen to while they work. That leads to a discussion about the music, the content of the songs, even romance. I think if we were sitting in a room not doing artwork, and I asked, “What do you think of teenage intimate relationships?” they would by stymied. But when there is no pressure to talk and music is playing, the conversation just flows. It’s beautiful to see.
Do you have tips for parents of girls with autism?
It’s worthwhile to try to build your daughter’s social network slowly and carefully. Rather than signing up for karate or ice skating and hoping they will form relationships, maybe identify one child at school your daughter can connect with and build that connection over time. If you’re arranging play dates, make them highly structured play dates. You have to say, this is what we’re going to do when your friend comes over. It can be tough — sometimes parents can’t identify anyone to hang out with their daughter. That’s why I like my program: These are all girls without friends for the most part.
Do you have suggestions for parents without access to a program like yours?
Sometimes you can work with the school to see if you can build a program like that. Connecticut [among other states] has a program called Unified Sports, which brings together kids with special needs and typical kids who serve as peer mentors. Some girls I work with have been able to connect by participating in Unified Sports.
What’s the most surprising or significant thing you’ve learned in your practice?
In the lay world, people tend to think that people with autism have little interest in social interaction. That’s true for some people with autism but many folks I meet really want to connect. They’re just struggling to figure out how. I’ve been surprised and delighted to see how well they can connect.
Can you recommend any ongoing or published research studies on girls and women with autism?
Jamison just published her first paper on the Girls Night Out program. The journal Molecular Autism has a good overview article on sex and gender differences in autism. Meng Lai, a physician and scientist at the University of Toronto, is running a study on cognition and neuroimaging in females with autism spectrum conditions.
For more information on sex differences in autism, check out this special report from Spectrum, a publication of the Simons Foundation.