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  • Anxiety in Cornelia de Lange syndrome

    Presenter: Dr Hayley Crawford

    Date of presentation: 28th October 2017


Key Fact

Always seek the support of others when conducting these assessments in order to ensure that the approach is both systematic and thorough.

Assessment of Behaviours that Challenge

When trying to assess the causes of behaviours that challenge in people who have Cornelia de Lange syndrome, it is important to remember that behaviours that challenge has not always occurred and does not occur all of the time for any child or adult (it just feels like that sometimes!).  This means that the behaviours that challenge are likely to be related to either internal or external factors that have changed over a long period of time or change on a more short-term basis.


Successful assessment of the causes of behaviours that challenge rests on finding out more about the events that occur before and after the behaviour. 


There are a number of assessments that can be conducted to help understand the factors that may be causing behaviours that challenge.  Some of the assessments can be carried out by anybody who has a good knowledge of the person showing behaviours that challenge.  However, some assessments require more expertise and families are encouraged to seek assistance from professionals.


When conducting an assessment, it is essential to keep good written records as these records will be the key to understanding behaviour.  A professional, such as a clinical psychologist or behavioural nurse, will be able to help you interpret these records.


Health Assessment

Revisit the pain and discomfort page to learn about the signs of pain in a person with intellectual disability.  A physical cause should always be ruled out first.


ABC Charts

The ‘ABC’ stands for antecedent, behaviour, consequence.  The person who completes these charts writes down exactly what was going on before, during and after the behaviours that challenge.  It is really important that the record keeper gives a really good and detailed description when completing ABC charts.


Download instructions for completing an ABC chart

See the level of description needed.  Download an example ABC chart

Download a blank ABC chart for use at home


Unstructured natural observations

In an unstructured natural observation the person with Cornelia de Lange syndrome is observed in a number of naturally occurring situations and environments.  For example, playing with an adult, playing by themselves when an adult is present in the room or completing a unpreferred activity.  The person observing keeps a record of how many times the behaviours that challenge occur and for how long, in each situation.  If behaviour goes up and down in different situations this gives a clue to the function of the behaviour.  It is very important to do several good quality observations before making any conclusions about the behaviour.  Getting support from a behavioural specialist such as a clinical psychologist or behavioural nurse is advised when interpreting the records collected from these assessments.


Specialist Assessments

There are a number of assessments that we would recommend are conducted with the help of a professional as there are a number of risks associated with these assessments that need to be managed carefully.  The assessments are experimental analogues and structured descriptive assessments.  These assessments are the gold standard in behaviour assessment and involve systematically changing what is happening around the person to see how this impacts on behaviour.


Questionnaire Measures

Professionals often ask carers to complete questionnaire measures about behaviour and two good questionnaires are the Motivational Assessment Scale (MAS) and the Questions about Behavioural Function Scale (QABS).


NEXT: Interventions for behaviours that challenge

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