Journal
INFANTS & YOUNG CHILDREN
Volume 33, Issue 2, Pages 108-118Publisher
LIPPINCOTT WILLIAMS & WILKINS
DOI: 10.1097/IYC.0000000000000160
Keywords
autism spectrum disorder; behavioral intervention; early intervention; tuberous sclerosis complex
Funding
- Pilot Clinical Trial Award from the Department of Defense [DOD CDMRP TSCRP: W81XWH-15-1-0183]
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Tuberous sclerosis complex (TSC) is a rare genetic syndrome that confers risk for neurodevelopmental disorders, including autism spectrum disorder and intellectual disability. Delays in social communication and early cognitive abilities are observable as early as 9 months of age in children with TSC; however, there have been no studies of early behavioral intervention in TSC. We conducted a pilot study of an evidence-based, parent-mediated behavioral intervention focused on improving early social communication and play skills in 5 children with TSC (aged 1-3 years). Participants showed maintenance and sometimes gains in developmental abilities, relative to peers, following intervention. Parents generally found the intervention to be helpful and were able to administer the intervention with fidelity. 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.
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