Social-emotional instability in individuals with Rett syndrome: parents' experiences with second stage behaviour.
Kids with stage-2 RTT still want to connect; watch for micro-moves, not autism labels.
01Research in Context
What this study did
The team sent a survey to 42 parents of girls with Rett syndrome.
All girls were in stage 2, the time when hand skills and words are lost.
Parents listed every social act they still saw at home and how often it happened.
What they found
Moms and dads said social acts dropped, but they did not vanish.
The acts that stayed looked different: brief eye lean, small smile, quiet body lean.
Parents said the will to connect was there; the body just could not follow.
How this fits with other research
Nickerson et al. (2015) watched home videos and also saw social signs stay over the study period in preserved-speech RTT.
Fujiura et al. (2018) asked parents of high-functioning autism and found will plus skill missing; here, will stays but motor fails.
Van Keer et al. (2017) showed that quick parent responses boost looks and starts in kids with big motor delay—same tool may help here.
Why it matters
Do not write “autistic-like” in your report before you test for intent.
Use short wait times, face-to-face positioning, and light touch to give the child a motor shortcut.
Track tiny social moves as valid data; they show where to build treatment.
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02At a glance
03Original abstract
BACKGROUND: While the medical profession often terms behaviours in individuals with Rett syndrome (RTT) in the second stage as 'autistic-like', parents disagree with this description. The present study focuses on a comparison of parents' experiences with the social-emotional behaviour of the child with RTT in the second and subsequent stages. METHOD: In collaboration with the Dutch Rett Syndrome Organization, 51 parents of children with RTT in the Netherlands took part in the present study. Parents completed an online questionnaire to clarify their experiences of the social-emotional behaviour of their children during and after the second stage of RTT. Both quantitative and qualitative analysis techniques have been used. RESULTS: The results of the paired-samples t-test show that parents see significantly less social-emotional behaviour in the children during the second stage of RTT than in the subsequent stages. Parents reported that their children did not seek as much interaction. From the parents' descriptions, it would seem that the children are willing but unable to interact with their environment. CONCLUSIONS: Like previous research, our study leads to doubts about the appropriateness of the label 'autistic-like' for the behaviour of individuals in the second stage of RTT. While behaviours of individuals with autism and individuals with RTT may resemble each other, quality and intentions may differ. Still, future studies are needed for further clarification.
Journal of intellectual disability research : JIDR, 2016 · doi:10.1111/jir.12233