Making friends, music, and an impact on the lives of individuals with Williams syndrome

ACM Lifting Lives camper

Each summer, individuals with Williams syndrome travel to Nashville to participate in the weeklong ACM Lifting Lives Music Camp. The campers arrive eager to connect with friends and to work with their favorite country music stars and songwriters. While socializing with friends and musicians and performing on the stage of The Grand Ole Opry is a huge part of the draw to camp, so is the unique “backstage” opportunity for campers to make a difference in the lives of others.

For the last 14 years, campers have participated in a diverse portfolio of research projects that have helped investigators at the Vanderbilt Kennedy Center (VKC) to better understand the characteristics, strengths, and challenges of individuals with Williams syndrome.* Projects have allowed researchers to debunk commonly held myths, to identify differences and individuality, and to develop innovative treatment and intervention models.

Elizabeth Roof, senior research associate in Psychology and Human Development, has been involved in the development of the camp’s research agenda since 2005.

Elizabeth Roof

Elizabeth Roof

“When we first started the camp, we were trying to see how we could use music as a vehicle for understanding our campers’ strengths and weaknesses,” said Roof. “We have asked questions about things like whether having an affinity for music equals talent, or whether participation in music activities lessens depression and anxiety.

“Over the last couple of years, most of our research has focused on the social aspects of the syndrome. We know individuals with Williams syndrome are really friendly and that their parents’ number one concern is to keep them safe from people who might take advantage of them. So, we’ve been interested in how independence and social connections can be encouraged while making sure they are safe and protected.”

Building upon “stranger danger” training and research from previous years, Roof and her team engaged the campers this year in a more subtle “stranger task.”

Picture this: A research assistant is leading a camper through a computer task in an office. Suddenly, a person comes through the door and claims to have reserved the room. The person becomes agitated and starts an argument with the research assistant that lasts and escalates for a couple of minutes.

“We wanted to know how campers would react,” said Roof. “Would they talk to the grumpy person? Would they interact in any way? We were interested in learning whether they would recognize potential threats in situations. Most people would not get involved in an argument unless someone’s safety was at risk, so we wanted to see if there were no safety issues and it was just a grumpy person arguing about scheduling a room, would campers try to intervene or make the person feel better?

“We also measured their anxiety levels during the conflict and how physiologically aroused or upset they were by what was happening. Some of the campers did get involved in the conflict and some of the campers did not. While we are still analyzing our data, I do know that this further emphasizes for us that having a particular diagnosis does not always mean having the same challenges.”

Roof and her team are developing an intervention based on their findings.

In addition to the stranger task, campers also assisted in studies focused on communication and social cognition skills.

Miriam Lense, Ph.D., research instructor in Otolaryngology and a VKC member, facilitated the music research at camp this year. Her team looked how individuals interact when communicating with each other, including through conversation or through music.

2018 ACM Lifting Lives music campers

2018 ACM Lifting Lives music campers. Photo by Getty Images/Terry Wyatt, Courtesy of ACM Lifting Lives

Campers had an opportunity to talk, sing, or tap drums with a researcher, by themselves, or with a metronome. Previous research with individuals without Williams syndrome show that when individuals talk or make music with others, they may change how they speak or act compared to when they talk or make music on their own. For example, individuals may change how fast or slow they talk or sing to become more similar to the talking/singing rate of their partner.

Sasha Key, Ph.D., research associate professor of Hearing & Speech Sciences and Psychiatry & Behavioral Sciences and a VKC investigator, conducted EEG research focused on social cognition skills in persons with Williams syndrome. (EEG, or electroencephalography, creates a set of brain waves that is used to look at brain activity.) The campers played several computer games that required attending to or ignoring social stimuli (unfamiliar young adult faces). The purpose of these tasks was to explore the campers’ ability to regulate their behavioral response to social cues.

“Based on previously published studies, we expected this to be challenging for persons with Williams syndrome,” said Key. “However, the campers performed very well. They were successful at finding the target stimuli among the distractors, while trials requiring response inhibition were more difficult. These findings yield new information about the possible reasons underlying heightened pro-social characteristics of the syndrome, which could be relevant for developing new programs aimed at reducing social vulnerability in Williams syndrome.”

Roof says the research activities at ACM Lifting Lives Music Camp always receive high marks from campers. She says they enjoy talking and learning about themselves and appreciate “having their brains challenged during camp.”

“Williams syndrome is a pretty rare disorder, so it’s really great for the campers to come together from around the country and connect with people who are just like them,” said Roof. “And it’s also great for them to see beyond the similarities and to recognize their own unique qualities.”

Williams syndrome is a rare genetic condition (estimated to occur in 1/7,500 births) that causes medical and developmental problems. It is associated with an unusual pattern of strengths and weaknesses in linguistic and cognitive profiles, as well as intellectual disability.

Courtney Taylor is VKC associate director of Communications and Dissemination.

Pictured top of the page: An ACM Lifting Lives Music Camper participates in research to learn more about social cognition in persons with Williams syndrome. Results could have relevance in developing new programs aimed at reducing social vulnerability.

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