Research into genetic syndromes is a growing literature. One of the problems with this literature is that in many cases a general profile of behavioural strengths and weaknesses is reported for a particular syndrome. Whilst this provides a good overview of behaviour in genetic syndromes, a greater understanding of the behavioural issues that are present is necessary.
In order to increase knowledge and understanding, research needs to focus on the particular aspects of behaviour that are of interest, and carry out detailed study on these areas. A further problem relates to the applicability of measurement tools to this population. Many measures of behaviour that are suitable for individuals with intellectual disability are not appropriate for this population because they are not specific enough to pick up on certain, perhaps more unusual behaviours that are shown in many genetic syndromes (Dykens, 1995). To address this, we have been developing new measures to examine a range of behaviours.
If you would like to obtain further information about any of our measures (including psychometrics) or receive full copies, please email us at:
Dykens, E.M. (1995). Measuring behavioral phenotypes: provocations from the “new genetics”. American Journal on Mental Retardation, 99, 522 – 532.