How PDA can feel

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 – our series of case studies and our ‘Demand Avoidance of the PDA kind‘ video give great insights into the lived experience.

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?

“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)

Adults

“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

“To sum up PDA the words ‘irrational’ and ‘paradoxical’ simultaneously spring to mind and jostle to the front to be picked … I sometimes wonder if ‘Pathological Procrastinating’ may be a more befitting name, or perhaps ‘ Pathologically Free-Spirited’, or even ‘ Pathological Curiosity.” – Harry, The PDA Paradox.

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.