The PDA profile of autism is experienced differently from one individual to another, and in the same individual in different environments or at different ages. The quotes below give a snapshot of how some people experience PDA.

“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

Male Teenage Pupil Playing Drums In Music Lesson

“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?

“It’s like my body has 2 control centres, one is my heart and one is my brain. My heart wants to do something but my brain says no, and no matter how hard I try my brain just won’t let me do it. It’s like there’s a train, and there is a driver at each end, both drivers are pulling in a different direction so the train can’t go anywhere, it just stays still, it freezes like me” – Holly

“I feel most anxious when I’m pressed to do something I feel I can’t do, but when people around me don’t understand what I mean when I say “I can’t do that”. I know how to do things, and I can do them sometimes, but most of the time I just can’t. It starts with avoidance but if someone is insisting I’ll go straight to panic. I go from being sort of OK to crashing down a hill. It’s the most frustrating thing to have the functional capacity to understand what’s happening but the functional ability just isn’t there. It’s the worst form of self-sabotage.” – Isaac (Isaac explains how PDA impacts him in detail on his YouTube video)

“PDA is like trying to face your phobias every waking moment! For me it’s like being in a malfunctioning robot. Every button I press has an opposite reaction to my intentions.” – Riko, Riko’s blog

“Demand avoidance is everything. After a day of social interaction I might need a week of recovery. My anxiety bucket doesn’t empty naturally (or if it does it’s very, very slow). I never want to get to the point where it’s full as then my cognitive ability becomes too impaired and I can’t cope.” – Julia, Me Myself & PDA

“PDA for me is a rainbow spectrum of strengths and weaknesses; highs and lows. I am a squiggle shaped peg that fits none of society’s round holes.” – Sally, Sally Cat’s blog

“I like to describe the experience of being under a demand as similar to having claustrophobia. The anxiety keeps rising steadily until it becomes a non-negotiable, panic-driven need to flee from the source of the demand.” – Tony

Many adult PDAers also talk about the many positives of PDA, how discovering PDA has enabled them to ‘make sense’ of themselves and that with increased self-awareness they’ve been able to develop self-help techniques and coping strategies. Early identification and personalised support have been shown to lead to the best long term outcomes for all autistic people. Please see Benefits of understanding the PDA profile for further information.

This information put together by our PDAer panel (Julia, Sally, Riko and Tony) and other PDA adults sharing their experiences to help and support other PDA adults and their families. Thank you to all of them, and also to Sally Cat for producing the graphics on these pages.

• Coming to terms with PDA
• Autism & the PDA bits
• Anxiety of the PDA kind
• Managing life
• Managing education
• Managing work
• Relationships
• Where will I end up?
• Parenting as a PDAer

So much information about the PDA profile of autism focuses on the differences and challenges. Whilst this can of course by the daily reality for many, it’s so important also focus on the huge number of strengths and positive qualities that often also accompany PDA.

“Our PDA Journey” was chosen as the theme for our conference in 2018 to reflect the fact that we’re all travelling a road together. The “journey” from first recognising there may be something ‘different’ about us or about our children to the ‘lightbulb’ moment of discovering PDA; as children grow into teenagers and then adults; as more research is undertaken and our understanding of PDA evolves; and not least our journey of personal growth as we learn to live with PDA. “Our” to reflect the PDA community, the importance of ‘finding our tribe’ and the support that can only come from others who ‘get it’.

Depending what stage we’re at on this journey will very much influence how positively or otherwise we may feel about PDA. And at all times we may need a little boost of positivity …

So for PDA Day in 2018 we created some resources around the theme of “Positive PDA”.

• Words of encouragement
• The lightbulb moment
• Greatest rewards of life with PDA
• Celebrating the PDA community

Our image for the day (created by Sally Cat) combines the words of 84 parents and carers when asked to name three of the child’s positives in the “Peaceful Parenting Place for PDA Parents & Carers” group on Facebook.