Behaviour problems in adult women with Rett syndrome.

Doughty et al. (2002) mailed a short survey to carers of adult women with Rett syndrome.

The carers rated how often the women showed irritability, hyperactivity, and inappropriate speech.

They compared these ratings to norm scores for other adults with intellectual disability.

The women with Rett syndrome scored lower on all three problem areas.

In plain words, carers saw them as less irritable, less hyper, and quieter than typical adults with ID.

van Timmeren et al. (2016) later surveyed the same adult RTT group and added a depression screen. They found that women who looked lethargic or withdrawn were more likely to screen positive. Together the two papers sketch a calm but fragile phenotype: fewer loud outbursts, yet still watch for subtle mood signs.

Taylor et al. (1993) showed that when self-injury does occur in Rett syndrome it can still be operant—automatic or escape driven. So low irritability ratings do not mean “no behavior plan needed.” They mean the behavior you do see may have a clearer, single function.

Matson et al. (2004) tested repetitive hand movements in an analogue setup and found them stubbornly high no matter what they did with attention or demands. That finding dovetails with the low hyperactivity scores here: the women are not bouncing off walls, but their stereotypies remain.

If you assess an adult woman with Rett syndrome, expect less yelling, throwing, or pacing than you see in other clients with severe ID. Do not relax too much—still run a full FA for any problem behavior that shows up, because it is likely to have a clean, treatable function. Also track quiet withdrawal; it may signal depression rather than “good behavior.”