» Behaviour

Getting booked for behaviour

Professor Chris Oliver – setting new guidelines to help solve behaviour issues.
A booklet outlining why so many CdLS people show signs of challenging behaviour is to be published by the Birmingham University team who have carried out the BRICC (University of Birmingham Research Into the Characteristics of Cornelia de Lange Syndrome) project. 

Professor Chris Oliver, who led the three-year project sponsored from lottery cash by The Community Fund, said the booklet could be used by both families and professionals to better understand the causes and effects of behaviour problems of people with CdLS. It will also offer some strategies for dealing with the problems at an early age.

With support from the Foundation, it is hoped that the booklet will be launched at the CdLS international conference in Sydney in July next year. Copies will be sent to all registered UK families.

The research project asked two key questions:

  • Are children and adults who have CdLS different from children and adults who have the same degree of disability?
  • Can any differences help us understand problem behaviour, particularly self-injury (SIB)?


  The Peebles meeting
  acknowledged the work
  done by the University of
  Birmingham team.

  They were:

  • Chris Oliver, Professor of Clinical Psychology, Project Director
  • Joanna Moss, PhD Student
  • Dr. Scott Hall, Research Fellow
  • Kate Arron, Research Associate
  • Jenny Sloneem, MRC funded PhD student
  • Dr. Philippa Hyman, Clinical Psychologist
The team made some interesting findings. They discovered that the prevalence of SIB is more common in children and adults with CdLS but there is no difference when tissue damage is used as a cut-off. Some SIB behaviours are even more common (biting, hand directed).

They also found that CdLS is associated with compulsive behaviours and is associated with significantly more health problems (which can be related to discomfort and pain).

And people with CdLS have poor expressive communication even though their understanding is good.

This led to a number of “take-home” messages:

  • Self-injury is not inevitable, but there is a higher risk.
  • Self-injury may begin in response to pain and discomfort.
Professor Oliver advised families to be more aware of the more common health/discomfort issues in CdLS and to seek medical intervention.

“If self-injury begins ask yourself could this be related to medical conditions that are more common in CdLS and seek advice on these conditions immediately“.

They also warned:

  • Self-injury may occur because the sensation experienced is pleasant.
  • ‘Normal’ pain response to self-injury may not be present.
  • Check social responses to self-injury. Are they rewarding?
“If a child carries out a challenging or self injurious behaviour, they can feel “rewarded” by your intervention.

“But ask yourself how else he or she could let you know that they need your attention or wanted something to stop” said Chris.

“We are urging people to offer rewards when no self-injury occurs.”

Poor expressive communication is a risk factor for functional self-injury. Sign systems, PECS, other ways of communicating are absolutely critical.”

Chris urged families to seek or demand help from clinical psychologists, nurse behaviour therapists, and speech and language therapists.

“There is a real problem that very few people are getting access to these services when there is such a clear need.”

And he was adamant: “If self-injury is increasing, seek advice early.”

Reaching Out newsletter

October 2002