Project information 

Towards an early intervention strategy for challenging behaviour in genetic disorders

Funded by the National Institute for Health Research from 2011 – 2016


Challenging behaviour, such as aggression or self-injury, is shown in approximately 1 in 10 children with a learning disability. For children who have particular syndromes, more severe disabilities or autistic like behaviours the prevalence is much higher. Once the children have started showing these behaviours, they tend to last for many years (unless they receive treatment) and will have a wide ranging negative impact upon the child and their families.

Aims and Method

In a series of studies, I will look at information from 1500 parents of children with thirteen different genetic causes of learning disabilities, otherwise known as syndromes. Using mathematical techniques, I will provide the NHS with more information on how many of these children are showing challenging behaviour and give them estimates of the cost of these behaviours to the NHS and social care services. I will also try to find out if there are any signs (such as specific behaviours) that could help us to predict which children are going to show challenging behaviour so that we can try and work with these children and prevent it from happening. The long term effect of challenging behaviours on families and carers will also be described.

Finally I will bring all of my research together in a format which could help the NHS and other services decide whether it would be beneficial to begin to work with children and families in high risk groups early on, to try and prevent these behaviours from developing in the first place.

Progress to date

This five year, part-time project, started in March 2011. The progress to date has been gaining ethical clearance for the project and recruiting volunteers to help with data collection. Data collection for most of the projects will begin in 2012 and continue across the duration of the project.

Contact Details

Dawn AdamsDr Dawn Adams
Email –