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Journal of Autism and Developmental Disorders

, Volume 49, Issue 12, pp 5063–5072 | Cite as

Brief Report: Modest but Clinically Meaningful Effects of Early Behavioral Intervention in Twins with Rett Syndrome—A Case Study

  • Kristine Berg TitlestadEmail author
  • Sigmund Eldevik
Brief Report
  • 102 Downloads

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.

Keywords

Rett syndrome Early intensive behavioral intervention Case study Clinical significance 

Notes

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.

Author Contributions

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.

Funding

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.

Compliance with Ethical Standards

Conflict of interest

The authors declare that they have no conflict of interest.

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Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2019

Authors and Affiliations

  1. 1.Department of Welfare and ParticipationWestern Norway University of Applied SciencesBergenNorway
  2. 2.Department of Autism, Pedagogical-Psychological ServicesBergenNorway
  3. 3.Department of Behavioral ScienceOslo Metropolitan UniversityOsloNorway

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