Brief Report: Modest but Clinically Meaningful Effects of Early Behavioral Intervention in Twins with Rett Syndrome-A Case Study.
Three years of EIBI gave twin preschoolers with Rett syndrome clear, if small, boosts in daily living skills.
01Research in Context
What this study did
Titlestad et al. (2019) tracked twin preschool girls who have Rett syndrome. The girls received early intensive behavioral intervention (EIBI) for three years. The team watched their communication and self-help skills over time.
What they found
After three years the twins showed modest but real gains in daily skills. They could ask for items more often and feed themselves better. The authors call the change “clinically meaningful” even though it was not large.
How this fits with other research
Most EIBI reviews, like Howlin et al. (2009) and Rodgers et al. (2021), show bigger IQ and adaptive jumps in kids with autism. Those studies pool hundreds of children and report medium-to-large effects.
Eldevik et al. (2010) also saw large gains, but their preschoolers had only general intellectual disability and got just 10 hours per week. The twins in Berg’s study had Rett syndrome and still improved, showing EIBI can help outside the autism label.
Short Rett-only trials such as Bertapelli et al. (2016) and Mammarella et al. (2022) used brief cognitive tasks and still found positive EEG or gaze changes. Berg’s long EIBI case lines up with these: even brief or modest interventions can move the needle for Rett, and longer ABA may add real-life skills.
Why it matters
If you serve a child with Rett, do not assume ABA is off the table. These twins prove steady, play-based teaching can sharpen communication and self-care. Start early, keep intensity reasonable, and track small weekly wins. Share clips of progress with parents so they stay motivated to practice at home.
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02At a glance
03Original 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.
Journal of autism and developmental disorders, 2019 · doi:10.1007/s10803-019-04185-9