There is a lack of research on the nature of Pathological Demand Avoidance syndrome in adults, and therefore there is no treatment pathway available to support people. This work is very much needed to help those who are struggling with the condition, their families, and professionals, for example those working in mental health services.
The first step was to develop a tool to enable the condition, in particular the extreme demand avoidance trait, to be identified. The ‘extreme demand avoidance questionnaire’ EDAq (O’nions et al, 2014) was amended to be used as a Self Report Assessment (SRA) tool and then tested.
Almost 350 adults with either suspected / diagnosed PDA or who were other ‘non-neurotypicals’ took part in the study, and the SRA was found to work well. A second study involved almost 200 people and the results of both are due to be published in a few months.
Within the research group, most were either employed or studying. It was found that those with PDA struggled particularly with emotional stability and their social skills, though they had fewer problems with communication than others with Autism Spectrum Disorders.
The work has shown the need for further work on helpful therapies for adults and it is suggested that positive emotional self-management to make coping and self-soothing more effective will be important.
Dr Egan presented his findings at the National Autistic Society’s conference on PDA in October 2016.
Read more about research into PDA here.