New KU research sheds light on behavioral differences between boys and girls with autism
The different ways autism affects boys versus girls has become a hot topic of discussion lately, especially among health care professions. Newly published research done through the Girls Night Out (GNO) program based at the University of Kansas Medical Center, is shedding new light on ways care providers may need to treat the two genders differently.
Rene Jamison, Ph.D., founder of Girls Night Out and an associate professor in the pediatrics department at KU Medical Center and the Center for Child Health and Development (CCHD), and her research partner, Jessica Schuttler, Ph.D., a clinical assistant professor in CCHD, have published the first study evaluating their intervention program, which is one of the only programs designed specifically for females with autism. Their research appeared in the Journal of Autism and Developmental Disorders.
In their study, which is based on nearly a decade of research and clinical experience, Jamison and her team recommend creating a structured plan of action designed for each individual specific group of participants. The GNO instructional framework considers the social competence and target behaviors for each participant, the context of development level, gender difference in social activities and behaviors, and it includes goals for self-determination. Girls Night Out, which is offered through the CCHD, was established in 2008 to provide an outlet for girls with autism spectrum disorder (ASD) and developmental disabilities (DD) to practice personal and social skills with age-level peers in a social setting. It is one of the few programs in the country that works specifically with adolescent girls with ASD and DD.
"The idea behind Girls Night Out has never been to change the way someone looks, or to make girls act more like other girls their age," said Jamison. "We want girls to feel good about themselves and build confidence, which will hopefully result in more attempts to build friendships or engage in social activities - which in turn, could build confidence."
How Girls Night Out Works
Historically, boys have been diagnosed with autism four to five times more often than girls, so much of the research and clinical services for autism have focused on boys. As a result, social skills groups and some classrooms have primarily concentrated on boys' needs. But now, a growing volume of research indicates girls present signs of autism differently, often times more subtly, so much so that in some cases girls have the social skills to mask the condition so it isn't diagnosed or there is a delay in diagnosis.
The research being done by Jamison and others is critical in understanding the best methods for working with teenage girls with ASD and DD. In Girls Night Out, participants learn to navigate the complicated social settings of adolescence by working alongside age-level peers and adult program leaders. Each social skills group has between eight and 12 participants, about half of whom are girls with ASD/DD. Girls are recruited mainly through word of mouth, but Jamison says they would like to be able to do more active recruitment in the future.
"We want to have groups and events more often across age ranges, but we don't want to open the flood gates when we do not have the resources or personnel in place to support the families," Jamison said.
Facilitators use data-based strategies to teach participants social skills that are incorporated into a curriculum developed by Jamison along with her colleague, psychologist Jessica Schuttler, Ph.D. Since its inception, there have been 11 Girls Night Out skill groups and 13 community events, which included more than 100 girls with ASD/DD and 120 peer volunteers.
By being a university-affiliated program with strong ties to the community, Girls Night Out is able to touch many lives in addition to the participants, Jamison explained. For example, over the years more than 35 undergraduates, graduate students and fellows from KU and KU Medical Center have worked as program facilitators. And more than 65 community organizations with have collaborated with Girls Night Out to conduct events.
Peer volunteers are critical to the success of Girls Night Out. Peers help participants learn and practice social skills during sessions. Facilitators show peer volunteers how to set up situations that will allow participants to successfully practice skills. For example, peers learn to offer cues within their conversations that prompt participants to improve their verbal interactions. Peers are coached not to be "helpers" for the participants but to use model behavioral supports and develop genuine relationships through common interests with the participants.
Participants set and monitor goals throughout the program. The girls and their peers complete rating scales related to social skills, self-perception and quality of life before and after completing the program. Their families receive feedback following each session. There are, on average, two 10- to 14-week sessions annually, along with several other special events scattered throughout the year.
"I've learned that there are other people like me, instead of me being alone and wanting to hide my flaws," said Stephanie Fleetwood, a 14-year-old eighth-grade participant from Hocker Grove Middle School in Shawnee, Kansas. "I've always felt alone and that my flaws were a burden. Knowing that there are other kids like me, makes me feel better."
A night out
If it's a Tuesday in Kansas City, chances are it's time for Girls Night Out, and on this particular stormy evening, the young ladies are gathered around a long narrow table inside SPIN Pizza in Prairie Village, Kansas, working on skills needed for dining out, including counting money to pay the bill and tip the server. They also set goals and brainstorm with their peers and adult facilitators on specific steps to meet those goals, which provides an opportunity for the girls to practice emotional support.
Jamison said developing social and communication skills among adolescent girls is particularly important because it's an age when their interactions shift from play and taking turns to dealing with conversations and relationships. The increased complexity in social interaction, paired with social impairment associated with ASD, can result in significant challenges for adolescent girls. Adolescent girls with autism are susceptible to anxiety and depression, so Girls Night Out provides a release of sorts.
"Girls Night Out provides a safe place for girls to try new things, practice skills, build relationships and have fun," Jamison said.