A group of brightly coloured post-it notes with handwritten messages from PDA people and their families.

PDA in Our Words highlights initial findings from new research by PDA Society, through the voices and experiences of PDA people and their families.

PDA Society was built by people with lived experience of PDA coming together to help each other. PDA in Our Words highlights the experiences of PDA people and their families and makes it clear that everyone thrives when the support they are provided is flexible and based on their individual needs.

I believe that we all deserve to access timely and appropriate support when we are struggling, but with services stretched to capacity, support is being unlawfully withheld from many PDA people without a formal diagnosis. Waiting lists for autism assessments are also longer than they have ever been, leaving PDA people and their families without anywhere to turn for help.

It would be life-changing for PDA people and the wider autistic community if support was built around an individual’s strengths and needs, no matter where a person is on their journey towards diagnosis. To achieve this, the voices and experiences of PDA people must be heard and respected.

PDA in Our Words includes examples of best practice in education, employment, and partnerships between parents and professionals. We hope this shows the transformational impact that valuing the power of lived experiences and adopting person-centred approaches can have.

After PDA Action Week we will be co-producing the full report with members of the PDA community alongside experienced researchers. We aim to share this with you within a few months.

Thank you for your support and commitment to improving the lives of PDA people.

Elizabeth Archer - Ed - Signature
PDA in our Words - Thumb

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We have heard time and again that learning about PDA is like turning on a light. Understanding why we feel the way we do can help us make sense of what works for us, but to make a lasting difference in our lives we also need other people to listen.

Last year, an incredible 1.1 million people accessed our website to learn about PDA. We need your help to grow this even further and ensure that the needs of PDA people are no longer overlooked.

Number of visitors to this website last year.
A post-it note reads, our children are not a problem to be fixed by blaming parents. Understanding it's physiological and that all we need is people to adapt their mindset. It's not that hard.
A post-it note reads, in education my child needs complete autonomy over all his learning with a flexible approach from trusted adults and for all people working with him to have thorough training in his PDA profile of autism.
A post-it note reads, in education my child needs complete freedom.


“In Year 10 I stopped going to school. There was no communication, you weren’t valued as a human. It’s a sickening environment to be in for anyone, but with PDA, I hated it. The craziest rules that didn’t make any sense, but were all about power and authority and control.

But things got so much better when I started at the college I’m at now. They encourage students, and they don’t look down on them or lash out and get angry with them for behavioural things. They recognise that students don’t misbehave for no reason.

I’ve found that this low demand environment works really well and my attendance has improved a lot. Being accepted like that is a really nice feeling. I don’t want to take it for granted because often the rest of the world is not like this.”