Behavioral Therapy Research in Down Syndrome
“It’s like learning a new language. It’s a challenge, but a good challenge,” explains Darlene about the new ways she has learned to connect with Travis, her 3 year-old son with Down syndrome. Her favorite part of BCH’s JASPER Clinical Trial Program came during the “Follow his Lead week.” “I would have never thought to point at things or to look at what he’s looking at as a strategy (as she mimics looking at some object in the sky that Travis might be seeing).”
Short for Joint-Attention-Symbolic-Play-Engagement-Regulation, JASPER[1] is a developmentally based behavioral therapy approach, developed by Connie Kasari, Ph.D., Professor of Psychological Studies in Education and Psychiatry at UCLA[2]. 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.
No Gold Standard
When asked what led her to study JASPER and its implications for children with Down syndrome (DS), Dr. Nicole Baumer, Director of the Down Syndrome Program at BCH, explained that children with Down syndrome have broad developmental delays and quite often have difficulty with challenging behaviors. However, there are no standardized behavioral strategies or therapies for children with Down syndrome. In contrast, Applied Behavioral Analysis (ABA) is the gold standard for teaching developmental skills and managing challenging behaviors in children with ASD and is mandated to be covered by most insurance providers.
Though likely to be as effective in DS as it is in ASD, children with DS and other intellectual disabilities typically cannot access behavioral therapy in most places in the United States, including Massachusetts. Darlene fully concurs: “If there are any behavioral interventions for children with DS, I am not aware of them. The services that Travis typically receives are OT/PT and speech therapy but not behavioral therapy which is greatly needed.”
Behavioral therapy in DS is largely inaccessible because it 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.
The Research Begins
Dr. Baumer is currently pioneering the JASPER Clinical Trial research program in Down syndrome, along with JASPER creator Dr. Connie Kasari and Dr. Charles Nelson, Richard David Scott Chair in Pediatric Developmental Medicine at Boston Children’s Hospital. The main objective of Dr. Baumer’s research is to determine whether an intensive, targeted early behavioral therapy intervention can improve developmental trajectories in Down syndrome.
Research Design
The research team has completed a 12-week pilot of the JASPER intervention with children with DS to determine the feasibility of conducting the study, looking at such data as attendance to in-person sessions, travel and parking concerns, and parent satisfaction. Assuming approval of additional funding, the team will investigate in the next phase (implementation), the impact of JASPER in children with DS in comparison to a standard parent education model. The JASPER group will participate in ten, one-hour weekly 1:1 parent coaching sessions using the JASPER strategies. Prior to the parent coaching session, the participants record a short video recording of the parent-child play dyad 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.
About Travis and Mom
Darlene feels that the JASPER intervention has been a wonderful experience even though it was not always easy to get to the hospital. 
Among the benefits she notes is that “he has been saying things that he never said before.” And not only did she see improvements in verbal communication, but also a deepened connection between them: “Doing this together really has added to my connection with him. While we have had a good connection this has added another dimension that I would have never known. I miss those intentional and dedicated sessions we had together.”
Potential Impact
Even when accounting for the variability in the quality of DS services in school, parents do not typically participate in their child’s direct services once they reach the age of three. Accordingly, broader application of skills learned in school, for which parents would be the perfect conduits to other areas in the child’s life, are greatly diminished or lost. By using parent-implemented evidence-based interventions, however, developmental skills, and challenging behaviors in children with DS can be targeted as can a strong emphasis on generalization and sustainability of skill development.
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.
By demonstrating the effectiveness of the JASPER behavioral therapy intervention in DS, this study has the potential to improve the lives of children with Down syndrome, intellectual disabilities, and their families.
Travis himself is just amazed to be in the position of leader, as his mother now mimics his play activity – a strategy learned during the program.
About Nicole Baumer, MD, MEd
Dr. Nicole Baumer is a pediatric neurologist and neurodevelopmental disabilities specialist at Boston Children’s Hospital, a member of the BCH Intellectual and Developmental Disabilities Center and Director of the Boston Children’s Hospital Down Syndrome Program. She is recognized as a local, regional, and emerging national expert in the clinical areas of Down syndrome and intellectual disability, In addition to her current research on behavioral interventions for children with DS, she is currently involved in a project aimed at understanding the Impact of Congenital Heart Disease on Neurodevelopment and Behavior in Children with Down Syndrome (with principal investigator M. VanRompay) and has been involved in several other studies on the neurological and physiological aspects of Down syndrome in children. Learn more about Dr. Baumer’s work>