Abstract
A growing evidence base supports early intensive behavioral intervention (EIBI) for young children with autism spectrum disorder. We have found only one study exploring the outcome of EIBI for children with Rett syndrome, which reported little effect. It suggested that future studies should employ more fine-grained outcome measures. We provided EIBI for twin 3-year-old girls with Rett syndrome for a period of 3 years. We analyzed raw scores and standard scores from a measure of adaptive behavior and a detailed assessment of skills across 25 areas. We detected moderate but clinically meaningful gains in areas such as communication and self-help. Gains are discussed from a quality of life perspective and whether the moderate effects can justify the resources required in EIBI.
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Acknowledgments
We thank the girls, the girls’ parents, the staff in the pre-school and the psychologist at the local pedagogical-psychological service that were involved in the behavioral intervention program. A special thanks to our colleges at Department of Autism.
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This study was not funded. In Norway, where this study took place, the approach Early Behavioral Intervention for Children is publicly funded. All children are enrolled in community-based kindergartens and supervision is delivered by community agencies.
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KBT and SE have made substantial contributions to conception and design, acquisition of data, analysis and interpretation of data. They both have been involved in drafting the manuscript and have given final approval of the version to be published.
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Titlestad, K.B., Eldevik, S. Brief Report: Modest but Clinically Meaningful Effects of Early Behavioral Intervention in Twins with Rett Syndrome—A Case Study. J Autism Dev Disord 49, 5063–5072 (2019). https://doi.org/10.1007/s10803-019-04185-9
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DOI: https://doi.org/10.1007/s10803-019-04185-9