Challenging Behaviour in Phelan-McDermid Syndrome

Data collection for this project is being supported by Unique Rare Chromosome Disorder Support Group (UNIQUE)

The background to the study:

The identification of individuals at risk of developing challenging behaviours such as aggression, self-injury and destructive behaviour, is extremely important as it can have significant implications for individuals, their families and the services supporting them. However, to date, very little research has been conducted that outlines the specific challenging behaviour profile of individuals with Phelan-McDermid syndrome (PMS). As PMS has been found to be associated with profound learning disability and autism spectrum disorder (Shaw, Rahman, & Sharma, 2011) which are both known risk markers for challenging behaviour (McClintock, Hall, & Oliver, 2003) it is important to carry out research that aims to gain a detailed picture of the prevalence, phenomenology, associated characteristics, and any subsequent function of challenging behaviour in this group. Early identification of individuals at risk of developing challenging behaviour will enable the implementation of early interventions which attempt to reduce or replace behaviours before they become established.

The aims of project:

To further explore the behavioural phenotype of Phelan-McDermid syndrome by investigating the prevalence, phenomenology and cause/function of challenging behaviour.

What does taking part in the project involve?

The project will involve interviewing parents/caregivers about the challenging behaviour their child/ the person they care for displays. Interviews will be conducted over the telephone at the participant’s convenience.

How to take part:

If the person you care for with Phelan-McDermid displays challenging behaviour (self injury / aggression / destructive behaviour) and you think that you may be interested in taking part, please let us know using the contact details below and we will be in touch with more information.

Contact details of the people who are working on the study:

Project Coordinator: Laurie Powis- email:

Project Lead: Professor Chris Oliver- email: