This is a report on a small pilot study of an evidence-based, parent-mediated behavioral intervention focused on improving early social communication and play skills in five children with TSC, aged 1–3 years.
This team’s previous study published in 2014, found that infants with TSC demonstrated early delays in nonverbal cognition and social communication skills, and these delays were most prominent in those who develop autism spectrum disorder (ASD). They reported that by just nine months of age, social communication delays differentiated those infants who were later diagnosed with ASD from those without ASD. The 2014 study also found that TSC infants with ASD demonstrated a significant decline in their nonverbal cognitive abilities from 12 to 36 months of age.
It is known that early intervention improves outcomes in children with ASD. There is also a growing body of work demonstrating that interventions targeting nonverbal communication can improve language and social interaction in toddlers at high risk for ASD. This study was developed to test models of early intervention that may improve developmental trajectories and outcomes in children with TSC.
What was involved in the study?
This study reports on an implementation known as JASPER – Joint Attention, Symbolic Play, Engagement, and Regulation. JASPER specifically targets the foundations of social communication using strategies to increase the rate and complexity of social communication. It includes parents as implementers of the intervention.
Five children with TSC and their parents engaged in a 12-week intervention focused on improving social communication and play skills. The intervention included daily sessions for two weeks, followed by weekly sessions for ten weeks. Parents were first taught to recognize the child’s current level of play and use of social communication gestures. They were then taught strategies for maintaining engagement with their child and facilitating gestures, spoken language, and play behaviors.
What were the outcomes?
The children in the study showed maintenance and sometimes gains in developmental abilities, relative to peers. Parents generally found the intervention to be helpful and were able to administer it. Whilst this is a very small trial, preliminary results demonstrate initial feasibility of an early play-based, parent-mediated intervention and support the need for a large-scale, randomized clinical trial in TSC.
McDonald, N. M., Hyde, C., Choi, A. B., Gulsrud, A. C., Kasari, C., Nelson, C. A., 3rd, & Jeste, S. S. (2020). Improving Developmental Abilities in Infants With Tuberous Sclerosis Complex: A Pilot Behavioral Intervention Study. Infants and young children, 33(2), 108–118. https://doi.org/10.1097/iyc.0000000000000160
Full paper available (at extra cost) at: https://doi.org/10.1097/iyc.0000000000000160
This information is intended to provide some insights into recent TSC-related research. It is not intended to, and it should not, constitute medical or other advice. Readers are warned not to take any action without first seeking medical advice.