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Behaviour Challenges in CdLS

There are various behaviours that may be present with an individual with CdLS.  The following resources can be helpful in understanding the responsive behaviours commonly seen in CdLS.


An Observational Study of Social Interaction Skills and Behaviours in Cornelia de Lange, Fragile X and Rubinstein-Taybi Syndromes. 2020. Kathleen Ellis, Chris Oliver, Chrysi Stefanidou, Ian Apperly & Jo Moss.

The behavioural and wellbeing of children and adults with severe intellectual disability and complex needs: The Be-Well checklist for carers and professionals.  Journal of Paediatric and Child Health - Oct. 2020. Chris Oliver, Hayley Crawford, Dawn Adams, 

Sensory processing in CdLS.  A useful presentation providing information on Sensory Processing by Christine Ackermann, MEd,OTR/L and Amy Metrena, MSPT.  US CdLS Foundation Professional Development Committee.

Similarities and Differences in CdLS & Autism

A Guide for Parents and Carers (2003)

The Be-Well Toolkit (published by Cerebra). Watch the YouTube video by Dr. Chris Oliver on the purpose of the toolkit here. Download the Tool-Kit here.

Video Series

Wellbeing of people with Cornelia de Lange Syndrome (2020)

Presented by the US CdLS Foundation Virtual Conference- June 2020

Presenter: Dr. Chris Oliver.  Describes the presentation of intolerance to future uncertainty, anxiety, compromised shifting and the development of phobias in individuals with CdLS.

Neurodevelopmental Disorders Behaviour Management in CdLS (2019) Dr. Siddharth Srivastava, M.D.  Individuals with CdLS can be affected by a number of developmental disorders, including intellectual disability, autism spectrum disorder, language disorder, ADHD, aggression, repetitive self-injurious behaviours, anxiety, and depression. This webinar will discuss each of these domains as it relates to CdLS, as well as strategies for pharmacological intervention.

How to Address Challenging Behaviour (2019) Julie O'Connor covers covering self-injury, impulse control, destruction of property, appropriate consequences & treatment options.

Anxiety and Aggression in CdLS

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