“It’s like learning a new language. It’s a challenge, but a good challenge,” says Kristala of the new ways she has learned to connect with her 3-year-old son, Ellison, who has Down syndrome. Her favorite part of the Joint-Attention-Symbolic-Play-Engagement-Regulation (JASPER) clinical trial program at Boston Children’s Hospital came during the “Follow His Lead” week. “I would have never thought that pointing at things or looking at what he’s looking at could be a strategy,” she says.
JASPER is a developmentally based behavioral therapy approach developed at UCLA by Connie Kasari, PhD. It targets foundational social communication, social interaction, and play skills, as well as emotional regulation in children with cognitive, behavioral, or intellectual disabilities. In clinical trials over the past 15 years, JASPER has been shown to improve early developmental skills and behavioral regulation in children with autism spectrum disorder (ASD). Often conducted in a naturalistic setting, the child guides the play, while the therapist or parent models language and regulation techniques.
Bridging the gap
Although JASPER is likely to be as effective for Down syndrome as it is for ASD, children with Down syndrome and other intellectual disabilities typically cannot access it in most states, including Massachusetts. That’s largely because behavioral therapy has not been rigorously and systematically studied in children with these conditions. Without a well-researched therapeutic standard, not only is there great variability in the quality of the services offered (whether privately or publicly through special educational programs in schools), but there is also a lack of evidence that can be drawn on by advocates for improved health care services and coverage.
Now, a group of investigators led by Nicole Baumer, MD, a pediatric neurologist and neurodevelopmental disabilities specialist who directs Boston Children’s Down Syndrome Program, is studying the potential benefits of JASPER for children with Down syndrome. Along with Kasari and Charles Nelson, III, PhD, director of research in the Division of Developmental Medicine, Baumer hopes to determine JASPER can improve developmental trajectories in Down syndrome.
“Children with Down syndrome have broad developmental delays and quite often have difficulty with challenging behaviors,” she explains. “However, there are no standardized behavioral strategies or therapies for children with Down syndrome.”
Laying the groundwork
To determine the feasibility of conducting the study, Baumer and her colleagues have completed a 12-week pilot of the JASPER intervention with children with Down syndrome, looking at such data as attendance to in-person sessions, travel and parking concerns, and parent satisfaction. In the future, the team plans to investigate the impact of JASPER in children with Down syndrome compared to a standard parent education model. The JASPER group will participate in 10 one-hour weekly 1:1 parent coaching sessions using the JASPER strategies. Prior to the parent coaching session, the participants will record a short video recording of the parent-child play interaction for the therapist to review and individualize based on each child. All participants will undergo baseline and post-intervention neurobehavioral and neurophysiological assessments. The standard parent education group, on the other hand, will receive weekly materials on general parenting techniques such as positive behavior supports, recognizing communication strategies, and applying routines, as well as the benefits of engaging with their child.
To address health inequities surrounding the lack of access to services, a virtual or hybrid model, which is currently being tested, will allow for these promising interventions to be accessible to families who cannot typically get to the weekly, in-person treatment.
A deeper connection
By demonstrating the effectiveness of the JASPER behavioral therapy intervention in children with Down syndrome, this study has the potential to improve the lives of children with Down syndrome, intellectual disabilities, and their families.
In the meantime, Kristala, who participated in the feasibility study with Ellison, says the JASPER intervention has been a wonderful experience for them both. “He has been saying things that he never said before,” says Kristala. Not only did she see improvements in verbal communication, but she’s noticed another change, too. “Doing this together really has enhanced my connection with him,” she explains. “While we have had a good connection, this has added another dimension that I would have never known.”
As for Ellison, he’s just amazed to be in the position of leader, as his mother now mimics his play activity — a strategy learned during the program.
Make an appointment with the Down Syndrome Program and learn more about the Intellectual and Developmental Disabilities Research Center.
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