PDA in our words

Nearly 1000 people responded to our 2023 survey. Four PDAers Riko, Leila, Hannah and Jennifer worked with us to analyse the results and set them in the context of their lived experience. ‘In our words’ is the result, a report that has both statistics and stories about what life is like right now for PDAers and their families.

Read the full report here

4. Research and professional practice landing page 1

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 wrote - the story for PDA children and young people

This section talks about what children are experiencing, what diagnosis is like, school and education as well as their relationships and health.

Learn what life is like for PDA children

Hannah wrote - the story for PDA adults

Hannah writes about what the survey results told us about daily life for adult PDAers, their work, health, money and relationships.

Read about adult PDAers and their experiences

Jennifer wrote - the story for parents and carers of PDA children and young people

This section talks about what parents are experiencing, their worries and struggles on behalf of their children and experiences of parent blame.

Find out what life is like for parents & carers of young PDAers

The authors of the report ask you, will you pledge to treat PDAers as you would a trusted friend by:

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.

Will you help a family today?

68% of people who use our support service say it made their life better. And thats important because PDA has a daily impact on PDAers and those who love them.

We want to keep helping everyone who asks us – but we need your help because more people are coming to us for support than ever before.

With the support of generous people like you we can respond to everyone who asks for help. Can you make a donation today?

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