About the PDA Society

In 1997 parents of PDA children started the PDA Contact Group. Over time the group changed its name to the PDA Society and registered as a charity in 2016.

We provide information, support and training about PDA for individuals, families and professionals. We aim to increase acceptance and understanding of a PDA profile and to improve outcomes for individuals and families by focusing everyone involved on ‘what helps’. These aims are underpinned by our 5 year strategy and its 6 main goals:

  • Research
  • Information/training for professionals
  • Information/training for the PDA community
  • Support
  • Inclusivity
  • Sustainability & compliance

The PDA Society is run by six trustees who are all volunteers and all have a direct connection to PDA. In 2021, they appointed a CEO, Helen Evans, to help them run the charity. Helen is autistic and also has a direct connection to PDA.

Our activities

Each year we answer around 2,300 enquiries from people seeking support and deliver training to 2,400 parents, carers and professionals. Our information resources reach 500,000 people a year via our website and social media.

All our services are run by the PDA community and include:

We also share good practice, work in partnership with other organisations and promote research on PDA.

The PDA Society is a member of the Embracing Complexity coalition, the Voluntary Organisations Disability Group and the NCVO (The National Council for Voluntary Organisations).

We’re delighted to be partnering with Great Minds Together and the NHS Health Education England Autism Peer Education programme – working together to increase understanding of PDA and what helps in order to improve outcomes for individuals and families.

The PDA Society Team

The PDA Society’s trustees are: Sally Russell OBE (Chair, External Affairs/Research Lead), Vikki Threlfall (Vice-Chair, Secretary, Comms Lead), Paula Webb (Enquiry Line/Events/Safeguarding Lead), Hilary Harvey (Admin/HR/Training/Forum Lead), Jilly Davis (Education Lead) and James Hulse (Fundraising Lead).

In 2021, the PDA Society appointed its first CEO Helen Evans to help further the charity’s mission and reach.

Our team of volunteers and contractors offer parent-to-parent support via our enquiry line service, moderate our discussion forum, send out our literature and merchandise and help at our events. We also work with a team of self-employed training facilitators who help deliver our training programmes and have contracted help for our admin, social media, website and enquiry line team.

We also work with a PDA Adult Panel and will be setting up a PDA Youth Panel in 2022.

Awards

  • We were thrilled to win a People’s Choice Award in the 2022 Charity Film Awards with our short film ‘What is PDA?’. A big thank you to everyone who voted for us and to the wonderful group of PDAers and PDA Society team members who feature in the film which received 113,120 views throughout the event.

  • We were proud to be finalists in the 2021 National Diversity Awards. It was a wonderful celebration of the mutual support that the PDA community provides and a marvellous validation of our work.
  • PDA Society CEO (Helen Evans) is a 2021 Learning Disability and Autism Leaders List winner. Read her story and thoughts on being an #ActuallyAutistic CEO here.

The PDA Society in numbers

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