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.

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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…

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Hannah's reflections - an abstract squiggle icon

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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 - An abstract icon of a face

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…

Jennifer's reflections - an abstract icon of a flash

Pledge to treat PDAers
as you would a trusted friend

An icon of an ear representing listening
Listening

Be open minded about people’s needs and don’t make assumptions

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Trusting

When the human being in front of you tells you they are struggling, believe them.

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Adapting

Respond to what someone tells you works for them and be prepared to try different approaches.

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Accommodating

Assume everyone is doing the best they can right now and make accommodations where you can.

An icon of a heart representing the need for respect
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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