The PDA Society

Safer Sphere is thrilled to be partnering with the PDA Society to raise money make a real difference in the lives of PDA individuals and their caregivers.

PDA, which stands for Pathological Demand Avoidance, refers to autistic individuals who experience a fear response when faced with demands.

It goes beyond mere reluctance or refusal; it is the feeling of being unable to do things, even those they desperately want to do, if they perceive them as threatening their autonomy.

Research suggests that there could be 140,000 PDA individuals in the UK, but this condition remains largely unheard of.

This is where our fantastic team come in. Together, we aiming to not only raise funds but also raise awareness.

584 days ago my then 9 year old daughter crashed in autistic burnout. Burnout does not just start on one day. Her’s was preceded by months of increasingly intense meltdowns and a slow decline in what she and we were able to do as a family. 584 days ago the school avoidance became so intense she was screaming at fever pitch when it was time to leave the house.

We had been there before. The early school years were traumatic and we tried every form of schooling, eventually settling on mostly homeschooling her with a small team of highly trained specialists. She was finally doing better. Yet the new headteacher at her school gave us an ultimatum to make her return full time or she would be unenrolled from the school system. We were forced to go to court (Tribunal), won and finally got her a place in a specialist autism school. We were over the moon! At last a place where she could thrive, be herself and build a community.

A few months in the dysregulation started again.

The intensity of burnout is hard to describe, especially the violence and aggression. Broken furniture and dishes were a daily occurrence, a computer and laptop were thrown out the window, the wall plaster around the house broken from being pounded with heavy objects.

At some point the violence got so intense that we had to separate our family for several months to keep our other child safe.

What we couldn’t understand was why our autistic child was so different from the many other autistic kids we knew? Why was her mental health deteriorating so fast even though we followed every advice in the autism space? Why didn’t most of the classic autism interventions work?

In an airport lounge on a work trip I called one of my close friends and she recommended looking into Pervasive Demand Avoidance (PDA), a profile of autism.

It was a watershed moment. During the 9 hour return flight I started reading the PDA Society website and listening to Casey Ehrlich ’s podcasts. For the first time ever did I read testimony that accurately described what we experienced every day.

It put the unexplainable into words. I felt seen for the first time on this absolutely draining parenting journey. I cried the whole way back - mostly from relief to have finally found a name and from grief and exhaustion.

PDA is a nervous system disability that puts the brain constantly on high alert. Even something as banal as asking my daughter to brush her teeth can register in her brain as an existential threat.

We are surrounded by demands. The behavioural approaches in parenting and schooling are based on demands - whether framed as incentives or consequences. Reward charts, certificates, stickers. This together with autistic masking was a poisonous mix for her nervous system. No wonder she ended up in burnout!

We are 584 days into the journey of completely reframing the way we interact with her in a low/no demand way: she eats whatever/whenever/wherever she wants; no screen limits; she sleeps when she wants; etc.

It took a MASSIVE leap of faith but about 9 months in the violence started to reduce. Now 18 months in she has three tutors that spend up to 6 hours a day with her. She’s learning again in a completely child-led way: at the pool, on a bike, climbing trees, looking for hedgehogs. We can have friends and family over at the house again. We went on our first family holiday in ages in August. We are not quite there yet, but we clearly see the light at the end of the tunnel!

To mark the end of this incredibly dark chapter I’m doing a cycle ride from London to Paris with a small group of friends between 14-18 Sept 2025.

I’m starting way too late to fundraise but I’d like to raise at least £1 for every day since our daughter crashed.

The proceeds will go to the PDA Society.

Their website and resources are an incredible fountain of knowledge for families like ours, who feel like they have nowhere else to turn!

Thank you for the incredible support to you, the PDA Society, and respect for the many other PDA families who are all on this journey!

Please support this fundraiser and share. Merci beaucoup et salut Paris!

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Want to join me in making a difference? I’m raising money to benefit The PDA Society, and any donation will help make an impact. Thanks in advance for your contribution to this cause that means so much to me.

More information about The PDA Society: Pathological Demand Avoidance (PDA) is widely understood to be a profile of autism. The PDA Society provides information, support and training about PDA for individuals, families and professionals - directly supporting 3000 people each year. We aim to increase acceptance and understanding of PDA, and to improve outcomes for individuals and families by focusing everyone involved on what helps. The PDA Society is run by a small team, all of whom have a direct connection with PDA.

In order to mark my 75th year I felt I wanted to take on some sort of challenge. The challenge will be walking Hadrian's Wall with my dog Dippy, something I have always wanted to do. The walk starts on 9 September and to give me an incentive to complete the challenge, I am asking for sponsorship to donate towards a charity which has become very important to our family in recent years.

The photo above is of our grandson Toby who was born with a complex neurodiversity. He has autism with the additional element of PDA (pathological demand avoidance). This condition needs a very different parenting process and one that can be extremely challenging and stressful at times. The PDA society has provided a huge level of support to all those involved with Toby and particularly to his parents Keri and Joe, who have been unsure of how to proceed on many occasions. The PDA group are always there to offer sensible and well-informed advice to those in need, based on a vast knowledge of this only recently recognised aspect of autism. Any donation would be wonderful and would go towards supporting a charity that is so deserving.

Thank you

Jenny

My son Finlay was diagnosed as autistic with a pathological demand avoidant profile in late 2019. Pathological demand avoidance (PDA) is a rare and often very misunderstood part of the autism spectrum.  Finlay suffered from this lack of understanding, with the education system failing him for his first two years of school.

To help overcome this misunderstanding, the PDA Society provides information, support and training about PDA for individuals, families and professionals – directly supporting 3000 people each year. 

 They aim to increase acceptance and understanding of PDA, and to improve outcomes for individuals and families by focusing everyone involved on what helps.  The PDA Society is run by a small, primarily voluntary team, all of whom have a direct connection with PDA.

 The PDA Society has been a direct help to Finlay and us on our journey, and we wouldn’t be where we are now without them.  However, there is so much more they can do with the right funding.  As well as the support they already offer they have an ambitious 5-year plan to really make a difference across many more aspects of this complex condition.  For more information on the PDA Society see www.pdasociety.org.uk.  For their 5-year plan see

https://www.pdasociety.org.uk/wp-content/uploads/2021/12/PDA-Society-Strategy-2022-2027.pdf. 

 So in May 2023 I will take part in the Cape Wrath Ultra to raise money for the PDA Society. This will involve running over 400k from Fort William to Cape Wrath in 8 days through some of Scotland's most beautiful yet brutal landscapes. You can find out more about the event here www.capewrathultra.com.  A great intro video here https://www.youtube.com/watch?v=FintRew4GHM. And for those with a bit more time to spare this playlist of daily highlights from the 2021 event are well worth watching - https://www.youtube.com/playlist?list=PLXYvQzYIt-EXvDnDaFYyAtO2vpWQTiEjz.

 Please give generously!

On the 24th of June I will be riding 205 miles from Sheerness in Kent to Weston-super-Mare, Somerset. The challenge is to leave at sunrise and get there by sunset. That’s 4.41am to 9.33pm. 205 miles. 3000m of elevation and 17 long hours of pain.

This isn’t going to be easy for me and whilst I have tried to train hard for this event, I’m not where I need to be. Its going to be a long, hard, ugly day…

However, in taking on this challenge, I want to raise money for a cause that is very close to my heart.

My son Edward is 9 years old. He’s clever, funny, loves spending time with his friends and loves animals.

Unfortunately though, Edward struggles with life on a daily basis. He hasn’t been able to attend school on a full time basis for the past 3 years.

A couple of years ago he was diagnosed autistic with a PDA (pathological demand avoidance) profile. Those 3 words rule our lives and make life incredibly difficult for Edward.

Simply, kids with PDA have a fight or flight response to any demands that are put on them, causing very high levels of anxiety. We all know life is about demands. Its a complex condition, its all consuming, its draining and very difficult for all involved.

The PDA Society is a small organisation that supports people with PDA and their families, raising awareness of this rare condition with professionals.

Any money raised will go along way to support other kids and familes like ours.

15th of May is PDA Day and together as a PDA community we’re aiming to complete 1.5 million steps in May to raise £5,000 for the PDA Society’s research activities.

 

Research is the theme for this year’s #PDAday - research is key because 70% of people say lack of understanding about PDA is a barrier to getting help, and research will lead to better understanding, improved practice and better outcomes for PDA individuals and their families. Promoting high quality research, informed by what matters most to the PDA community, is one of our 5 year goals and we have lots of exciting plans to make this happen. This will include a consultation survey asking the PDA community to tell us their top unanswered questions about PDA that will inform a national call to action for more PDA research, and a research conference in 2023.

 

To hit our target, we’ll be walking, running, climbing the steps in our house … you name it we’ll be doing it! As our #ActuallyAutistic Chief Executive Helen Evans shares: “I’m walking my steps for everyone’s right to have their PDA profile recognised and accepted. I can’t wait to smash our 1.5 million target and maybe even get a bit fitter whilst doing it!”.

 

A big thank you to everyone for supporting our campaign. If you’d like to know more we’d love to hear from you.