01825 760 019 office@wealdenvolunteering.org.uk Volunteer awards Wealden Community Lottery
News

Uckfield Volunteer Centre’s members learn all about PDA at their latest Networking Lunch

Pathological Demand Avoidance (PDA)

At one of our a recent community lunches we had an interesting presentation from Tom Crellin, an Uckfield resident who has a daughter with PDA.

The following is an article explaining what PDA is, who the PDA Society are, how it works, and further information.

What is PDA?

Pathological Demand Avoidance or PDA, is widely understood to be a profile on the autism spectrum. Autistic people with a PDA profile struggle with everyday demands, like eating, drinking, getting dressed etc, which can cause anxiety if they can’t be avoided. This can include things they enjoy.

The concept of PDA was first discussed in the 1980s by Professor Elizabeth Newson OBE.

When was the PDA Society founded and why?

The PDA Contact Group was originally founded by parents of PDA children in 1997. Since then, the group has evolved to become the PDA Society and was registered as a charity in 2016.

The purpose of the charity is to provide information, support and training about PDA for individuals, families and professionals.

What is the aim of the PDA society?

The aim of the PDA Society is 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 their 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 volunteer trustees, who all have a direct connection to PDA. In 2021, they appointed their first CEO who is autistic and also has a direct connection to PDA.

How can PDA feel?

There are many aspects to PDA; demand avoidance is the most significant, but not the only, trait in a PDA profile and it’s experienced differently from one person to another, and in the same person in different environments or at different ages. Here are some quotes from individuals shared on the PDA Society website:

Younger children:

“Although I’m acting angry what I’m feeling is terror, and afterwards I don’t remember what I’ve done” – Jack

“It’s like a great big whoosh of NO!” – Ben

“When people speak to me in an authoritative way it makes me want to punch them really hard!” – Chloe

Older children:

“It’s like you’re gaming and you have the main controller, and then sometimes someone yanks that controller away from you and you lose control and feel panicky,” – Mollie

“Demand avoidance makes it sound like I’m avoiding things on purpose, but I literally have no choice in it whatsoever. So I prefer to call it demand anxiety.” – Tally, Can You See Me?

What are the positives to PDA?

It’s important to remember there are a huge number of strengths and positive qualities that often also accompany PDA – creative, funny, determined and empathetic are just a few characteristics people have used to describe their PDA child or themselves.

When discussing PDA, many adult PDAers have focussed on the many positives of PDA. Identifying PDA has enabled them to ‘make sense’ of themselves and that increased self-awareness has led to the development of self-help techniques and coping strategies. If identification happens in the early years, and is followed by personalised support, evidence suggests that this has led to the best long-term outcomes for all autistic people. 

What approaches are helpful?

Conventional approaches based on firm boundaries and the use of rewards/consequences/praise, or approaches often recommended for autism (such as routine, structure and predictability), are often ineffective and even counter-productive for a PDA profile.

PDA people can thrive with the right tailor-made approaches though, with support based on trust, flexibility, collaboration, careful use of language and balancing of demands.

The PDA Society’s P-A-N-D-A mnemonic is a quick reminder of these helpful approaches.

For more information about PDA and the support and training services they provide, please visit the PDA Society’s website: https://www.pdasociety.org.uk/. All images copyright PDA Society.

If you would like to have an article published on our website, please contact office@uckfieldvolunteer.org.uk. All articles are also promoted via our social media channels, Linkedin and in our newsletters.