PDA in Our Words
PDA in Our Words has been written in partnership with four PDAers, Riko, Leila, Hannah and Jennifer, in response to the findings of our 2023 survey.
Riko’s introduction
Reading this report was hard but important. It highlights things that are going wrong for people, and how knowing about PDA and having people put in the right accommodations helps. It shows the difference that getting it right can make. The case studies in this report show us that life doesn’t have to be as awful as some of the stats suggest just because you’re PDA. Plus, I can tell you myself that I am really happy.
I noticed in all the sections the authors say how important listening is. For me that means listening to what people are actually saying – not what you think they are saying. So, if somebody tells you they need flexible working hours, take that at face value. We really aren’t saying we don’t want to work at all. When we talked about this report, we agreed that there were some things everyone could try and do that would make life easier for PDAers and our families. We hope once you’ve read the report you will be willing to try them.
Leila’s reflections
The story for PDA children and young people
Knowing about PDA has been life-transforming for me, and I have heard many other families of PDA children say it was for them too. Early diagnosis and support could have spared me much emotional pain and turmoil, improving my social and academic life, confidence and overall health…
Hannah’s reflections
The story for PDA adults
I hope this report can be a place for you to safely learn about PDA, and to understand that our experiences are layered. I can find discussion of PDA harrowing because people describe us as complex and that can be heard (and meant as) difficult – and this can be a barrier to caring or trying to help…
Jennifer’s reflections
The story for parents and carers of PDA children and young people
I hope reading this section helps people to understand what it is like caring for a PDA person, and what an important job that is. When we accommodate PDA kids, actually we get brilliant adults…
Pledge to treat PDAers as you would a trusted friend
Listening
Be open minded about people’s needs and don’t make assumptions
Trusting
When the human being in front of you tells you they are struggling, believe them.
Adapting
Respond to what someone tells you works for them and be prepared to try different approaches.
Accommodating
Assume everyone is doing the best they can right now and make accommodations where you can.
Respecting
When PDA people struggle to respond in the way you would expect, they aren’t trying to hurt you, they are just trying to keep themselves safe.
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