PDA Research Priorities
We have made significant strides since the first research paper identifying PDA was published by Prof Elizabeth Newson in 2003, but more research about PDA and wider demand avoidance is needed. To truly improve lives for PDA people and their families we need robust academic research to inform effective person-centered support strategies, and which can shape recommendations for improvements in policy and clinical practice.
The PDA Society are committed to ensuring that there is more good quality research about PDA. Alongside quality, there needs to be a focus on how useful research will be to people struggling with demand avoidance, and ensuring they are respectfully included in the research process.
Research that the PDA community needs
In 2022, we surveyed the PDA community alongside a range of professionals and researchers to identify what they felt were the most important unanswered questions about PDA. Through this exercise we identified nine key research priorities which we broke down into thirty-nine questions.
You can read about how we developed these priorities in this report.
Community Research Priorities:
- What are the origins of the experience of the PDA profile, including the specific nature of the demand avoidance?
- How do people experience PDA, and the world around them, day-to-day?
- What impacts a PDA person’s quality of life and what changes would improve outcomes?
- How can professionals be better informed and services better configured or adapted to meet the needs of PDA people?
- How can specific needs and strengths of individual PDA people be better understood to make a difference to them?
- How should we best and most usefully define and describe PDA?
- What relational and therapeutic approaches help and what harm a PDA child or adult?
- What learning environment and approaches are effective in meeting a PDA learner’s needs?
- How do a PDA person’s needs change over time?
For research to make a real difference to people’s lives, it needs to reflect the priorities of the PDA community. By highlighting the needs of people with PDA, their families, and the professionals supporting them, we hope to inspire new research, focus current efforts on the most urgent issues, and build a solid evidence base for future research funding.
As well as sharing the research priorities with researchers, funders, and policymakers, we are working to:
- Build interest amongst academics and policymakers in creating a Centre of Excellence dedicated to understanding autistic demandavoidance – how it presents and what truly helps.
- Source funding opportunities to sustain research in this area.
- Support people who are currently doing research that could change how people with PDA are understood and supported – or who have ambitions to in the future.
If you are interested in researching a topic related to PDA we invite you to get in touch with us at research@pdasociety.org.uk