An analogue assessment of hand stereotypies in two cases of Rett syndrome.
In Rett syndrome, hand stereotypies seem to run on their own clock, but self-injury often works for attention—check the function first.
01Research in Context
What this study did
Two girls with Rett syndrome came to a quiet room.
The team watched every hand wave, twist, and mouth for many hours.
They wrote down what happened right before and after each move.
What they found
Hand stereotypies popped up any time. They did not rise or fall with toys, praise, or demands.
Self-hitting was different. It showed up more when adults looked away and stopped when they gave attention.
The girls kept their hands calm longest when an adult played at their level and gave steady help.
How this fits with other research
Chin Wong et al. (2017) later saw the same hand moves in 58 girls across Taiwan. They found the moves slowly fade after age ten in typical Rett. M et al. only watched two cases, so the bigger study widens the picture.
Fyfe et al. (2007) built a parent-video tool that gives the same data without a clinic visit. Their method is easier on families and still reliable.
Gillberg et al. (1983) warned that many old papers on stereotypy used weak designs. M et al. answered by using tight, moment-to-moment recording.
Why it matters
If stereotypies have no clear trigger, stopping them may not be a first goal. Instead, give girls engaging tasks and steady adult support. That alone cut the moves in the study. When self-injury shows up, test if it wins attention. If it does, teach a simple replacement such as handing over a picture. Start with assessment, not a suppression plan.
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02At a glance
03Original abstract
The aim was to observe the behaviour of a sample of females with RTT and explore how it was organized in relation to environmental events. Ten participants, all with a less severe form of classic (n = 9) or atypical (n = 1) Rett syndrome (RTT), were filmed at home and at school or day centre. Analysis used real-time data capture software. Observational categories distinguished engagement in social and non-social pursuits, hand stereotypies, self-injury and the receipt of attention from a parent, teacher or carer. Associations between participant behaviour and intake variables and receipt of attention were explored. Concurrent and lagged conditional probabilities between behavioural categories and receipt of attention were calculated. Receipt of adult attention was high. Engagement in activity using the hands was associated with a less severe condition and greater developmental age. Engagement in activity, whether using the hands or not, and social engagement were positively associated with receipt of support. The extent of hand stereotypies varied greatly across participants but was independent of environmental events. Six participants self-injured. There was some evidence that self-injury was related to adult attention. Participants appeared to experience a carer and attention rich environment and their levels of engagement seemed high as a result. As in the more general literature, engagement in activity was related to personal development and to social support. Self-injury contrasted with hand stereotypies in having possible environmental function.
Journal of intellectual disability research : JIDR, 1993 · doi:10.1111/j.1365-2788.1993.tb00873.x