When NO Doesn't Mean NO - PDA & Autism PDA Part 1 (Pathological Demand Avoidance)

PDA (Pathological Demand Avoidance) can have a HUGE impact on people's lives. This video looks at how it's commonly misrepresented and how worrisome the popular perception of PDA is becoming. Pathological Demand Avoidance (PDA) is being increasingly discussed in autism & autistic circles, but how common is it? Is it easily identified? Could it actually do harm?

Part 2 of this series "Deconstructing PDA" can be found here:

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[Autistamatic]

This video looks at how PDA is commonly misrepresented and how worrisome the popular perception of PDA is becoming. A follow up video is in the works and if you have anything to offer in the way of personal input or information you'd like to see represented, please get in touch via autistamatic.com

[videocliplover]

“Not getting the answers I need before they lose their patience” I hate that! It happened so much that I grew up not asking for clarity as much as I needed and just going in with partial understanding then getting scolded if I did something wrong. I learned the only ‘acceptable’ place to ask a lot of questions was in school. I started relearning how to ask questions as an adult in my 30s.

[brianl.]

It is not only the 'request' from others, it is also our own thoughts that drive the 'avoidance' reaction. It definitely does not have to come from outside. We know that there is something, anything, that we should do but our brain says NOPE I AM NOT READY, OR GOING TO DO THAT, RIGHT NOW. And then the anxiety starts....

[cosmosisrose]

PDA as a term and as a concept have always rubbed me the wrong way. I was diagnosed with it alongside my autism as a child, and I hated the label. I would keep trying to explain that I wasn’t “avoiding demands” I had genuine reasons behind my disagreements etc. and if they would just explain why they needed me to do something or would hear my point of view I would be okay with doing it, but they refused to see it. to them I was just a kid who didn’t want to obey. they couldn’t wrap their heads around the fact that I was disobeying because they were hurting me, hurting other kids, or telling us what to do just because of a power trip that I could see right through. I realise now as an adult that they felt threatened by me, they felt threatened that that child could see though their system and was willing to point out its flaws. so they came up with this idea that instead of me having valid reasoning behind my feelings, I was simply unable to “comply” because of how anxious I was. even supposedly well meaning “professionals” would say that I wasn’t badly behaved, I simply couldn’t handle “demands”. which sounds better, except it completely robbed me of the tiny amount of autonomy I as a disabled child had. I keep seeing PDA being touted as this wonderful concept that could help explain why we don’t obey allistics, and it makes me feel ill. like even other autistics don’t see how this is harming us.

don’t get me wrong, anxiety around following demands and instructions is extremely valid and it’s common among autistic people, but I don’t like that it’s being used against a growing number of us to take away our ability to do the very human act of _disagreeing_ with someone.

I do like the recent push from PDA autistic folk to rename it, but personally as someone who’s had the label on me for about 10 years now I think the issue goes deeper than the (admittedly awful) name.

[colleenmcbride]

That Storm Trooper example is so relatable for me. One story in particular is when I was 10, I made a mess in my play room because I was trying to organize all the pieces in all 26 board games I owned. I was almost done when she came downstairs and started yelling at me for the mess. She told me "You better have everything up off this floor by the time you go to bed or it's all getting thrown away!" I started crying and said "Everything?" She just got mad thinking I was trying to manipulate my way out of cleaning it. So I got all the games done and on the shelf, then I had to figure out how to get the shelving unit off the floor. The only thing I could think of is to pick it up, so here I am, a 10 year old girl lifting up the shelf with the best of her ability.... Then it fell forward onto me and dumping all the games off, broke some of the boxes and pieces were everywhere. I got in trouble for "trying to be smart" and I had to put everything into a black trash bag and watch it be thrown into the garbage truck the next morning.

[BelfastDutchie]

For me, PDA definitely isn't a need to refuse. It's not even a choice. Annoyingly, I have no control over it whatsoever and I never know when it'll strike - though there are some particular settings in which it is almost inevitable. When it occurs, my mind will make it physically impossible for me to do what's requested of me. It's like a deadlock: no matter how much I try to reason agait, and no matter how willing I may be to perform the requested activity, my brain is incapable of breaking out of that deadlock, and I cannot force my body to comply.

This happens in all manner of situations. Group events are a clear trigger. I have long since accepted that I will be the designated weirdo who won't jump up and down, wave their hands, or strike a silly pose when the hundreds of people around me happily agree to those instructions. Less predictable are household chores. They will probably get done eventually, though I may not be able to force myself for a good while. But realistically, any request has the potential to instantly throw my mind into that deadlock. It's frustrating but I have largely stopped beating myself up over it, as that only sent me into meltdown anyway...

[mishmosh]

I always had to have a reason for what I was being asked to do. As a child, I was viewed as willful and defiant, simply because I always asked, “Why?” I’m still the same, but at least have lived long enough to know the reasons behind many requests. And as an adult, I have a bit more agency. This video is important, and I agree heartily with it.

[hrtdinasaurette]

Am a 52 year old women who has at long last got on the hamster wheel of trying to obtain an official diagnosis. For reasons too boring to explain, I had a complete break down in July, 2021 - I lost ability for self care, eating and leaving my bed became like climbing Everest. Then in Jan, 2022, my landlord told me that our entire block of flats must be cleared n I must be re-housed. I have lived here for 22 years and it is my safe and controlled zone. I will have to move to somewhere 1/2 the size and, therefore, dispose of 1/2 my books, music, clothing n possessions. The NTs understand moving is stressful but, for me it is pushing me over the edge. Never had kids or I may have had an earlier accurate diagnosis. I’ll shut up now. Thanx for your channel ❤

[tohrurikku]

The way PDA was described to me was totally different. It was described as feeling deeply uncomfortable and a your body almost physically protesting against the demand being demanded. For example if someone asks me to do something, or tries to give me an incentive, it is like I am cursed and will never be able to do it, even if I wanted to.

Even before I knew what PDA was I was begging my family to be careful with how they plan things with me otherwise it will end up with them being very angry with me because I will be showing up a few hours late or not at all. If I was cleaning, and someone came up and insisted that I would be done by tonight, and even though I knew I originally could have had it done before that time I now would not be able to do much cleaning at all.

Autism is a spectrum, and that means that you do not have to have PDA to be autistic.

[DianaThirring]

This video aggravates me. I’m halfway through and all I hear is examples that seem autistic but have nothing to do with PDA. PDA has nothing to do with needing more details to ensure success.

As a kid I tortured myself to not brush my teeth or to shower. Just doing it would have been so much easier. I canceled my loved piano lessons because six years of having to practice every day as a requirement had been torture and my pleas „if I didn’t have to I would!“ were not heard.

I underperformed at school as to not raise expectations.

I aborted an acting career because despite being hyped and motivated I could not make myself learn my lines until the last minute, when the fear of failure would become harsher than the torture of overcoming the demand.

I love the planning stage of every project, but as soon as it gets time to act on the set goals I get stuck. Every job has been torture because of it and I could go on and on.

This has indeed had a severe effect on my life and based on my experience I deem the label absolutely appropriate.

It seems to me you’re defending against a label that doesn’t apply to you and that you don’t understand even. I fail to see the value of this video and in fact consider it potentially harmful to those whose experience can finally be described with this term.

In my 20 years online this is only the second video I’ve bothered disliking.

[losgann]

PDA isn't recognised in Australia, but independent research following some behavoural observations my psychologist made lead me to PDA (which seems to be a UK thing from what I can tell). It's been incredibly difficult to figure out what it is as everyone seems to have different ideas about what it is, how it presents and whether there are alternate presentations of the underlying psychological mechanism. Before watching the video, my idea of PDA is a pathologised expression of autistic anxiety over lack of autonomy and fear of punishments and misunderstandings.

[WizardKitty]

This is definitely overused. Every now and then becoming unable to do a task after being asked to do it, when we were already planning to do the task, is not pathological in my opinion. This example is how I’ve heard PDA explained on some YouTube videos. My daughter and I experience this sometimes. For me, I find it super annoying to be asked when I was already gonna do it. Like an overreaction. And then I get stuck in the anger.
Although I’ve never seen true PDA, I suppose it might present just as you describe it. Someone who’s competent and capable but simply refuses to do anything expected of them. But then it would be hard to disentangle all the possible reasons. Could be all you mention. Could be burnout. I’ve been in autistic burnout for four or five years now and I find it hard to do much of anything.
Autistic burnout, I believe, will one day be it’s own diagnosis. It’s a beast. I wish there was some kind of treatment besides complete rest which is impossible for a single mom.

[XatxiFly]

"PDA is just too convenient a rug to brush genuine concerns and trauma under" < love this

[jedinavi]

I prefer “Persistent Drive for Autonomy” as the description of my cluster of traits in autism

[justuscrickets]

So good to see you and hear your voice again, Quinn, and on such a relatable subject, too! ☺️ I can't count the number of times I've taken flack for refusing or failing to do something I was asked to do for any number of reasons. The Young Crickets, too, often need clarification or the chance to negotiate tasks on their own terms in order to overcome initial reluctance to do what they're asked. And I agree that it's dangerous to undermine individuals' agency and ability to draw boundaries / manage consent by pathologising negative responses.

[levmargolies]

As someone who does struggle with PDA, it was fascinating to hear how it is misrepresented and misunderstood. On one side, I am glad it comes up in autism resources because it gave me a name for a phenomenon I've been explaining to friends and therapists my entire life. On the other side, it deeply bothers me when people (especially internet communities) learn a new term and apply it so broadly that it loses meaning (have recently seen this with gaslighting, for example). When you decide any demand avoidance is pathological it harms the people it is used against, but it also harms the people who really do have PDA because it is not taken as seriously. Very good video.

[sannacompton]

Discovering the PDA label was life-changing for me; I've never felt more seen. Throughout my life, I've often been misunderstood to the point where it hurts, and the inability to explain my feelings made me feel like I couldn't do anything right. Listening to your videos and others, I recognized myself so much that it's painful. I'm frustrated because I tried my best to convince myself I was normal, and now I feel like I wasted so much time.

[shosho_hrubblefongers]

I guess I'm not the only one who experienced everything you just described. Hearing you accurately describe my life experiences makes me feel treated like a human being.

[alanguest]

Quite a few interesting points raised, some reflecting many situations I felt were wrong, especially when I felt forced to do something that I knew was only for the benefit of others.

[HypocrisyLaidBare]

Nice to see you back Quinn, you've been missed by us all I'm sure.

As a late-in-life NHS-diagnosed autistic man similar age to yourself and a dad of an autistic son. I can relate to this video wholeheartedly.

My son Matthew is 8 yrs old, the school described his educational difficulties as "on the autism spectrum most probably PDA", He has been burdened with that label as unruly, awkward, disruptive, and difficult for two years.

The EHCP from the local authority designed to help kids with the needs of all kids refused him because PDA isn't a designated issue needing help.

The school nurse has by her untrained unhelpful and dislike of my son condemned him to a school life of struggle and underachievement.

I now spend my weekends with him (mum and I are now separated and living in different towns) doing extra-curricular work much to his displeasure.

My fear is as he gets into his double-digit years he will start refusing to see me and avoid studying.

All because of a know-it-school nurse/health worker.

But still no official diagnosis for my son it is almost impossible to get him to see anyone.

His mother is too busy with her other piece of ass to spend time going to the GP. Nobody seems to care but me.

Anyhow Quinn, the video is great, I agree that PDA is a tidy little box to hide away the typical's behavior traits to avoid admonishment for them from society.

I live in hope that one day in my son's lifetime, autism will be as accepted as having a beard or wearing sunglasses.