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When NO Doesn't Mean NO - PDA & Autism PDA Part 1 (Pathological Demand Avoidance)
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- Опубликовано: 26 фев 2023
- 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:
• Deconstructing PDA:Wha...
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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
Its been a few months. Are u doing okay? Haven't seen ya
“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.
Happened to me with the police at a road block trying to get information so I could change my route to get to drs as I was running late and couldn’t get a straight answer and they blamed me for being difficult fcuk them all the different ways I asked politely for clarification
You could ask questions in school? I always got in trouble.
I learned that IN school, what a crappy education system Ontario has.
Hi
Well said. Thank you
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....
Exactly!
This was almost depressing to watch. I relate to PDA on a level that this video doesn't seem to understand. It is absolutely both external and internal. Yes there are instances where I could be cooking something and someone tells me I should add something specific to it, and I am no longer able to, even if I was planning it. But it can also be for a small gathering of friends that I'm really lookingforward to, and the pressure of the need to attend can cause me all kinds of anxiety. Maybe I bought a new book that I've been wanting to read, or
I can force myself to do things, but eventually it becomes too hard and I crash. And I miss work. Or family obligations. Sometimes I have to bargain with myself to get myself to do something. "I'm doing X instead of Y." It's like screaming at myself to do the thing that needs doing until I eventually collapse from the effort. Which can be days, months or even in some case a few years.
I understand he is looking to protect and insulate the perception of people who are autistic. But there is a real chance of boxing out some of your fellows with stances like this that completely undermine their experience.
@@rustung1638 This! I feel so stuck right now. I'm into the compulsive information seeking stage of learning about it, and I'm finding a lot of videos describing it but next to nothing in terms of solutions. Most of the solutions I've found are for kids or require having someone around to co-regulate, which I just don't have. I'm just so tired, burned out, and frustrated.
@@MeredithDomzalski
Look for part 2 of the video. It can help reassure. There are some strategies I find that can help. Sometimes doing things immediately before you can think/feel about it can help. And sometimes just telling yourself you don't have to do it right now, leaves me feeling less boxed in by demands/obligations. Seeking disability currently. Hoping maybe if I can take some of that pressure away I can put everything else back together while I'm in a major burnout. Good luck.
@@rustung1638 Thanks! I didn't realize there was a part two, and I'll check it out.
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.
A diagnosis of PDA was used to silence your genuine concerns because authority figures don't like being questioned. I think genuine PDA is more like what happens to me. When a demand or request is made of me I often instinctively want to refuse. Especially if someone asks me to do something I was already planning on doing, or am already doing. Although I wouldn't necessarily say it was "pathological". I'm quite capable of following instructions as long as they are rational, and do not threaten to make my free will seem like following instructions (in the case where someone is asking me to do something I was already planning on doing, or am already doing).
Yep, well said. Story of my life BTW. It's not I don't want to do things, it's I see how stupid those demands usually are and I need to know reasons why I should do this or that stupid, useless, unimportant thing I don't want to. Should those reasonable reasons be presented in a logical and clear way, I most usually tend not to be reluctant to do them but since most parents (teachers, cares, whatever) when you're a child are reluctant themselves to give reasons and explanations, it makes it only worst, when it'd be really easy to explain things and we'd be good to go. But no, they refuse to explain things clearly, so Ok, I refuse to do what I don't want nor see any reason to do stupid things. Really hard to explain that to neurotypicals.
As someone who has PDA, this comment is really harmful. Just because you think you might've been misdiagnosed or this might not resonate with you, there are those of us who literally cannot do things we want to do because they're demands. I am sitting here vomiting from anxiety and begging my partner to cancel our trip this coming weekend to see TAYLOR SWIFT when I've been waiting for this for 17 years, and I will be ridiculously depressed if I do not go. However, it feels like a demand I cannot escape and that is killing me too. So please understand that this is actually a big problem for some of us, and it's not just about demands others place on us. It's about everything. It's about the anxiety we feel before doing things we want to do. It's awful.
@@Casiielake You don't "Pass" autism tests, and the knowledge about what constitutes autism has changed. PDA is a profile of autism. If you have PDA, you ARE autistic, as it quite literally a presentation of autism. Your comment sounds incredibly ableist. Please do some actual research about autism.
@@Ala13ManOWar "Should those reasonable reasons be presented in a logical and clear way, I most usually tend not to be reluctant to do them" "Ok, I refuse to do what I don't want nor see any reason to do stupid things" this doesn't sound like PDA at all.
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.
OMG 😮that’s so awful and terribly sad 😔
🙁❤️
😢
That doesn't make me sad, it makes me furious! A decent person could have said something like: I'm annoyed seeing this mess because it will give me a hard time trying to vacuum the floor if you don't clean it up.
And a decent person wouldn't torment a child by pointlessly taking away their stuff - not only taking it away, but throwing it away - not only throwing it away, but making you throw it away and watch it be trashed.
This story isn't about the misunderstanding caused by communication between an autistic and an allistic person. It contains that kind of thing, for sure. But this story is about child mistreatment. You are a survivor of child mistreatment. Or it's me projecting because I am one myself - you know best.
But hearing this story makes me very angry at this woman whoever she is.
@@nephistar This story makes me angry too because it reminds me of my mother, and all the trauma I experienced as a child. It makes me sad, also, because I can see myself in her story of being 10 years old, and being in that situation.
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...
Yes. That's where I was going to go with it. Quinn totally bypassed how PDA is related to, by the self. Its not about others making the demands, I can't even talk myself into it, and it can be rational, logical, and for the betterment of my own well being, and have no emotional baggage attached to it. I hit brick walls where non should exist and it is the most frustrating thing about being autistic for me.
@@mudotter yep, this is what I came here to say too, both the OP and this reply. PDA is absolutely a thing, and as many good points as he makes in the video, and as bad as the name is, and as surely negatively as it's affected many other autistic people, when I heard about PDA it *directly addressed* a large portion of what I struggle with in day-to-day life. I suffer task paralysis a lot, and more commonly when any sort of sense of expectation is attached to something, whether societal, personal, interpersonal or otherwise. the more I *have* to do something, the less likely I am to be able to even begin on it, and it only gets worse if someone is directly ordering or demanding me to. anything at all that harms my autonomy makes me freeze and refuse, even if it's something supposedly easy for me, or even sometimes things I enjoy. it's explicitly the demand, as described in its broadest terms, that make me unable to do things the vast majority of the time.
Yeah like listening to this vid it's like are you even pda at all bro, it's really only a small percentage of us autistics who are and it's absolutely pathological and debilitating. Not all autistics get to be super amazing cool people at peace w themselves once apart from nt hell
@@SnekInASuit and everyone else in this thread, I'm really glad to find this here. I'm not sure I'm understanding the overall point of this video; all i'm getting is that he's saying people are using PDA as an excuse to take away non-PDA autistic peoples' ability to say "no", which doesn't make any sense. PDA isn't an excuse to discard the opinions or refusal of those effected by it.
I'm glad it's not just me feeling this way. From what I 've seen and read, behind PDA is the inability to successfully switch gears and then line up the tiny, myriad tasks which must be performed - something Quinn didn't really focus on. However, the demo, for me, illustrated it beautifully. First you have to wrench yourself away from what you're already doing, to which a demanding tone actually adds its own difficulty (at least it does for me because it might mean immediate threat which causes momentary brain freeze). Then you have to try to line up all the little things which go into that task (more brain freeze) as well as try to get specifics out of whoever is asking. In my experience, trying to get people to be specific is like trying to fill a bucket using a sieve. Cue avoidance. Medics tend to slap on generic names for things they don't otherwise understand. Perhaps PDA has just been misnamed. What he was talking about seems closer to ODD than PDA from the little I know. there's a lady named KC Davis who talks about ways of dealing with what she calls our 'broken autopilot" which, for me, encapsulates it beautifully. @@DrymarchonShaun
"PDA is just too convenient a rug to brush genuine concerns and trauma under" < love this
When name-calling is used as a way to halt communication.
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.
Yeah. I'm not sure I'm understanding the overall point of this video; all i'm getting is that he's saying people are using PDA as an excuse to take away non-PDA autistic peoples' ability to say "no", which doesn't make any sense. PDA isn't an excuse to discard the opinions or refusal of those effected by it.
i absolutely agree, PDA isn't a requirement for an autism diagnosis, and no one's been arguing for that, as far as I'm aware.
It's astounding how much of me is in your comment. I'm on the spectrum, but this has always been a mystery, why I act like this. Suddenly I might know why.
I prefer “Persistent Drive for Autonomy” as the description of my cluster of traits in autism
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.
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.
Thanks for commenting Diana. This video is not what you seem to think it is and I can only hope that if you'd watched it to the end that might have become clear. As you have rightly pointed out - it cites examples that are *NOT* PDA which was the objective from the start. It was never aimed to provide a definition of PDA, nor to express how it limits people's lives but rather to highlight the danger of it's misapplication. There's plenty of PDA explainers available but this was never planned to be amongst them because it addresses a different, but related issue. As the chosen title "When NO *Doesn't* Mean NO" was expected to imply, the video is about the overuse and misuse of the PDA *label* rather than an A-Z of current thinking on PDA.
It concerns the proliferating misinterpretation and liberal application of the PDA label and how that is impacting the lives of people who are NOT demand avoidant and in turn, hurting those who ARE. The poor understanding of the subtleties behind the designation frequently leads to the genuine protests of people with a clinical PDA profile to be ignored even when PDA isn't involved which you, like the other PDAers I spoke to in researching this piece, may well have have experienced yourself.
The video attempts to describe the popular but inaccurate view of PDA and seeks to question it by offering insight into behaviours that are incorrectly attributed to PDA rather than explaining what PDA actually is. It is stated that PDA is real but that one must eliminate all other possibilities (such as questioning, moral concerns, executive functioning issues, hyper/hypo sensory concerns, miscommunication etc...) *before* jumping to the conclusion that an autist is attempting to avoid a demand due to pathological need. If we label someone who is just asking questions or has sensory concerns (for example) as PDA then we not only do them a disservice, we also trivialise the very real challenges people like you face. The basic message is "Don't consider PDA until you've ruled out other, non-pathological possibilities first". The examples given are to illustrate circumstances where PDA is NOT the case but is often assumed, to demonstrate how readily the label can be applied in error which can and does have serious & broad reaching consequences beyond the individuals concerned.
There is a widespread confusion over what actually constitutes PDA - even amongst autists and those who have built careers on studying us. EF problems are not PDA but are frequently cited as examples of it, as are instances of ODD. Even autists with diagnosable physiological or neurological problems such as ME/CFS, migraine, dyspraxia and various GI issues have been misinterpreted as PDA because of the "easy answer" it provides for our inability to comply with specific requests. The video seeks to highlight the growing problem of PDA being brandished as a weapon against autists, with or without a PDA profile, as a means of silencing dissent, avoiding questions, enforcing compliance and presuming consent.
Autistic lives are unnecessarily complicated by the misconceptions we battle every day. The moves in recent years to suggest that PDA is very common amongst autists and even to add it to the diagnostic criteria are a danger not only to those who are NOT genuinely PDA but also hurts those who ARE. This video offers alternatives to the "easy" answer of writing off our concerns, delays or protests as a "symptom" of autism without addressing the true causes of our reluctance or delay in action. Even those of us who have been designated as PDA in a clinical setting still have the same concerns, questions and sensitivities as others. Having our fears & worries brushed off as PDA is not only hurtful it can be extremely dangerous. The video points out that what "looks like" PDA isn't always PDA and that we should be more careful in apportioning the PDA label to an interaction even for those of us who are believed to be demand avoidant.
If you'd like to anonymously contribute your thoughts & experiences to a future release helping me to tell the other side of the PDA story I'd be delighted to hear more from you. You can get in touch via the channel's website.
@@Autistamatic thank you for your reply. I did watch the video to the end and the irritation didn’t go away. I understand what you tried to do with it. Please receive the Feedback that it may not have worked the way you wanted. But I am new to this world and only just pursuing an official diagnosis. It seems I don’t fully understand your concerns, other than misuse, which is of course a concern with everything in life.
I’d be happy to contribute in any way I can. Feel free to get in touch.
@@DianaThirring ...and thank you for coming back to me. I've talked to many people whose lives have been affected by PDA - those who've been DXed or identify with it and others who haven't but it's been presumed of them when it suited those in authority. Jobs have been lost, children excluded from school, families shattered and relationships fallen apart. Even abusers have been let off the hook because "sufficient doubts" have been raised over the victims' ability to give or refuse informed consent.
All of the difficulties you described in your 1st post echo experiences of my own and those of many other autists I've spoken to over the last few decades. The desire to do things of one's own volition rather than under demand, creating detailed plans we fail to actualise and doing things last minute (also an ADHD trait) are particularly relatable. You are far from alone, however PDA is only one of a number of possibilities that may provide a satisfactory explanation.
I can't reach out to you without an email address, but you can contact me via the form on the Autistamatic website. .
I agree. The other issue is that people like myself or my family don’t fit under the Autism diagnosis however if you really look into PDA it is clear. Also how to parent a PDA child is different and for years we were given advice from that made Anxiety and depression worse. It is then looked at as a character flaw. I think PDA is difficult for anyone to understand unless they are directly affected by it, so please don’t dismiss it or push it away because it seems to be damaging. It has to do with the nervous system being overwhelmed by demand. Because the fight or flight is instantly activated it is nearly impossible to communicate other than fight or flight. This video was invalidating.
@@jaymeleonhard3764 while I support what he was trying to communicate with that video I concur: „Invalidating“ is the word I was looking for to describe my outrage when watching the video. I did wonder whether it was me being overly sensitive, so I’m awkwardly glad I’m not the only one who had that experience. Thank you for sharing.
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 ❤
Omg that’s tough and a loss - I hope you have time an space to transition and grieve this loss - home is meant to be our sanctuary and safe place having this disrupted is massive
Sending much love
I have been here I was diagnosed at 51. If you need any support get in touch with me
Yes yes yes on asking questions
My worst night mare is getting a job but then not having the correct equipment to do it. And not setting it so carrying it out is simple. So when I worked in the RAP I’d do systems and tbf most liked them . I was a LCPL. I was told I was an asset to the RAP but that I had an unjust lack of self confidence ( due to sexism and transitioning from territorial training to doing the job in the post) I had one MO who was brilliant. If I said can you show me how to get a casualty out a AS90 gun. He would set it up. But I had one that stood in for him on his holiday time and she was nasty and the other medics hated her. So was on the ranges and the Battery commander told me to join in on the ranges and learn how to use trip flares and General purpose machine gun . I really enjoyed this and the lads covered my face in clarts ( I did take this as military banter and laughed) but when I got back I got told off for going on the range and was told I was meant to sit in the ambulance incase there was an accident not partake. So I said the BC instructed me to partake. So they punished me making me do sick parade with this officer they didn’t like so they made me take their job so they could avoid her. Imho they were demand avoidant not me. 😂😂
@@AutisticAwakeActivisthi there, just wondering how you start to go about getting diagnosed please?.I'm 51 and been reading up and watching a lot, not sure how to take this to the next step..any advise would be appreciated 👍 thanks in advance 😊
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 RUclips 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.
Or autistic inertia too
mmm indeed. And when someone says do it differently, when you are already in progress, man that's a bummer
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.
And trauma too
The only way I was ever "forced" to do something growing up was because my abusive parent used fear tactics. I'd be trying to get the thing done while feeling flooded with both intense fear and intense rage. Autonomy and understanding WHY the task is important matter a lot to me. I also, however, have an automatic reaction to reject any demand, even one I try to make of myself. It's hard to do ANYthing when I get stuck and keep refusing to do the supposedly simple and necessary demands of daily life just to care for myself. Maybe part of that is the trauma from abuse that brings all that rage back up at the slightest demand. Maybe that's just how my brain has always been.
@@RisaPlays I'm trying out a strategy that's partly based on the 2nd law of thermodynamics. There were times where I just couldn't get ready for work, although I wanted to go. Then my mom would ask me to do something and I would feel the urge to leave for work so I wouldn't have to do what she wanted me to do. So it's like, it's not really the thing itself. Because I could instantly get the urge to do something that just seconds ago I couldn't do no matter how hard I tried. I started getting the idea, what if I created demands strategically that I didn't want to do, so that the avoidant behavior would be what I do want. That's where the 2nd law of thermodynamics comes into play. I made a chart of time stamped transitions that include: sleep, nap, wake up, bed time target, bed time, complete wake up routine. I think of the time stamped transitions as quantized energy frequencies representing me physically doing the task necessary to register the transition on the chart. Then I use the 2nd law of thermodynamics as the demand. The avoidant behavior would be the homeostatic forces to maintain order in the system of time stamped transitions. So I try to trigger the avoidant urges strategically to produce counter urges that help me be more productive. It's really convoluted. Part of the idea is similar to how seconds and kilograms are defined in the metric system.
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.
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.
See my three iron laws in these postings. My other type of answer is yes, no, maybe, some other time. End of story and now leave me the F@#$ alone.
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.
Thank you for making this. I'm newly self identified and I'm happy to have learnt some truth about demand avoidance from the autistic community and how the professional establishment relate to it.
Your presentation is very clear.
My only criticism is there were no light sabers 😄
I’ve been told I have internal-PDA as I don’t avoid external demands but I do avoid internal demands as I have loads of internalised neurotypical expectations of myself.
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.
That's definitely an interesting and complex issue I'd describe the following as a person which ADHD and no job:
1. You look at job ads that don't tell you much about when you work, where you work or sometimes not even what you're gonna earn.
2. I start thinking the following:
a) Am I able to get there without a car?
b) Can I do my daily routines that I am used to because I'm a ditz sometimes? By forgetting to buy certain groceries so I obviously need to go shopping in smaller steps or organisation can get out of hand.
c) I'm usually busy with just the job for 10+ hours (travelling to work, work, breaks, travelling back home), I already need 2 hours in the morning to have safe zones for getting up in case I miss the alarm clock, to make break fast, getting ready for the day etc.
d) Gotta do housework in small steps like 30 minutes up to 1 hour every day or the "demotivating wall of awful" gets too high, preventing me to do much out of paralysis + obviously cooking for dinner and eating it which is like another hour of the day that goes missing
e) Do I have time to spare to come down between tasks if they're overwhelming, to decrease spiking anxiety levels etc.
f) Should I even work FULL TIME overall if it wears me down quickly by getting constantly tasks thrown at me?
g) Do I even meet the expectations (which I don't even know about yet but y'know brain farts) of the job or the people I am supposed to work with?
h) When I get fired prematurely for careless mistakes I might get blocked from welfare for like 3 months, which is either below the lawful financial minimum to live or down right indebting me for months to come, even unable to pay for my obligatory health insurance?
i) When I start working I automatically get indebted with about 1K €/$ because...last welfare check has to be paid back in my country
h) Am I just lazy to move out of my comfort zone because I didn't hold a job in years or is this anxiety of fuck ups and social irritability real?
j) Other people repeatedly tell me "You learn how to do this" or "You get better over time" while knowing with ADHD nothing in this world is certain, I always do as best as I can and get it, but will that actually be enough?
k) On unclear/overly ambigous instructions/task I almost automatically get anxious, my brain tends to freeze which cranks up mental resistance to do a certain task up to 15/10 points, I doubt it'll get better because I have absolutely no experience backed up in my mind that this ever happened (now I am wiser and know by my own research that EF functions differ on depending what you do, not what you did because they're highly circumstantial and new tasks, even if they build on stuff I already did, are best treated entirely new tasks. Also organizational differences between different companies, people, hierarchies, individual do's and don't's)
l) I overall feel bad among (new) people due to bad past experiences
m) I am supposed to write the application, but know bat shit about the person I send it to, I feel like a failure and am supposed to advertise my "good side" (which literally feel non existant) at the same time
n) My CV is horrible because I was in psychiatry, therapy etc. often, so literally entire years are missing, will the boss tie a rope out of it and hang me verbally with it?
o) If he does, can I actually bear it like the adult I am supposed to be or will I break down with tears and ridicule myself even further?
= perceived use/risk ratio = negative = nah better not do it and leave me alone
Short tasks in environments I am comfortable in, I already did several times, have low variance or where mistakes can be fixed in short time are usually no problem though.
PS: Diagnosed not only with ADHD but also social anxiety/phobia, rejection sensitivity is also a thing.
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.
Alex, I found this video to be thoughtful, wise and insightful regarding autistic neurology making neurotypical 'demands' more difficult for autists than for the majority, who are neurotypical. I will note here that I think of autists as my 'neurokin' and myself as an ally. I have worked with many autistic students in a specialized education program and became used to the young people beginning many of their responses to my questions, observations and comments with "NO," then pointing out that my interpretation, understanding, or wording was not correct; it did not correspond exactly with theirs. (I had established myself as a "safe" person in their eyes, so they felt free to be candid.) I will note here that humans of all types seek to understand what they do not - and so develop theories, frames, constructs, and labels (sometimes with elaborate collections of data, examples and explanations of their logic and methodology) that gives them a better sense of certainty and control over the unknown phenomenon. These CAN be helpful in aiding communication insofar as the parties have similar understanding of the meanings of the words and labels used. (ANALOGY➡) BUT, as if I describe the physics, chemistry, origin, development process, examples, variations and experiences involved with SNOW, until one has personally experienced snow (and not once, in a single setting, but multiple times) with all of one's senses, one has very little understanding of snow. So, official "medical" diagnoses approved by professional committees for manuals, as well as newer "not-so-official" theories, frames and vernacular (words) used formally or informally for observed behaviors, ARE NOT THE THING but are an attempt to describe THE THING and cannot capture all of the variations and experiences associated. ...Do autistic people seemingly 'avoid' many demands? Yes. Perhaps often rationally. Should there be a label for such 'avoidance' behavior should it grossly interfere with one's health and basic welfare? MAYBE, if it results in improved support for the person involved. NO, if it results in more medicalization, pathologizing and rejection of autistic traits and charactertistics.
Dx codes “ARE NOT THE THING but are an attempt to describe THE THING and cannot capture all of the variations and experiences associated”. Yes, indeed. And yet dx codes are valuable in many ways.. I think Quinn nailed it with his comments about assumed motive. That’s the real problem with dx codes… they have a functional purpose but the people they talk about usually haven’t been consulted as stakeholders… and clinicians will always bring their own subjectivity to things so left alone we can end up with perceptions that are way off base. As a person with ADHD I am forever grateful to Dr Russell Barkley for his lectures explaining what ADHD is and what it isn’t. He is the salve that soothes the burn of the Gabor Mates and Jordan Petersons of the world. He doesn’t tell us to pull ourselves up by broken bootstraps.
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.
I don’t know if this is any way helpful, but I know a friend of my family whose son was diagnosed PDA and had a really hard time with school, eventually was assigned to somewhere more specialist that was super-accommodating to his special interests… I haven’t heard from them for a while, but the impression I have is that he’s truly been thriving. Although I’d heard he was a difficult character, I never found him to be so in any of my interactions; he was super engaged in knowing more about graphics programming/VR etc and just didn’t have much time for anyone unable or unwilling to relate to him. I think he was pretty lucky to get the recognition and support he did; I *think* he has state support to be where he is, but I’m not totally sure of that.
The disability rights UK or the Disability law service in London has a free helpline for advice on issues to do with disability in education that you may find helpful-as it sounds like his needs are not being properly recognised or accommodated for where he is.
It feels like the older I’m getting that I’m getting further away from society in all aspects because people always want us to listen and comprehend them and they refuse to comprehend what we are going through. I’ve been having a lot of emotional break downs lately and it’s been frustrating not being able to date and find a women who doesn’t look at me awkward.
Well autism saved me from women completely. Or completely incelled me by them. Whichever way you prefer to look at it. Drama and constant mind-games still avoided though... .
Indeed😊
@@keylanoslokj1806yes indeed😊
Glad you’re back Quinn. I look forward to your longer form videos and really enjoyed this one.
A suggestion for a video topic: autism coaching - teaching helpful coping strategies or reinforcing conformity? I only have my own experience to go on so I’m not sure.
This reminds me of how I feel about ADHD coaching. I don’t need coaching. I need cues. Coaching is just more appointments to remember. I’m pretty sure there is a ‘how to make a profit from coaching people with ADHD to be ADHD coaches’ pack. A bit like those ‘how to make money selling books on the internet’ packs that you pay for and they are a ‘copy paste what I did’ kit. I’m guessing you aren’t a fan of coaching either based on the ‘reinforcing conformity’ bit.
When I first heard of Pathological Demand Avoidance, I had to get used to it being referred to as “PDA”, because I associated PDA as standing for “Public Display of Affection”. I did like the part where you referred to Rational Demand Avoidance though… it made me think about all of the times I had to prioritize tasks on my own in my work life (and still have to) because a supervisor couldn’t be bothered to do so.
To not formally recognise PDA is a mistake in my opinion. While I can see it becoming another overused label and a box to put someone in, for some, PDA is truly debilitating. My son, after much consideration and research from his psychologist, has recently been given a differential diagnosis of PDA. I have never heard my son say "No", to me or anyone else. Usually it's "I can't" and when asked why, "I don't know, I just can't". That's assuming you get a verbal response, usually he responds by feigning a yawn or sleep, giving a frustrated grunt or just rolling his eyes. And sometimes he just doesn't respond at all. It's not just the requests I ask of him though, it's all demands, including personal hygiene and going to the shop to buy his new game. Traditional parenting strategies did not work for him. I thought I was losing my mind but then the therapists also struggled for years trying to find ways to help him improve his personal hygiene, his participation in life and his independence without any success. He attends school, a support program, but once there will not do his work using his go to phrase of "I can't". We all know he has to, he knows he is expected to and yes, even has to, it's not that he won't, or doesn't understand why or what, he just can't. He is 16 by the way.
I do see much of myself in what you are saying about the needing more information and time to process and the like, and I also see a very big difference between my son and I and how we face the world and daily demands.
Tried asking him to consider things that he thinks would help him do stuff, or what he can do in the situation besides that specific thing? Rather than running, offer a shoulder to take a step, and the next step might be easier.
He may not recognize health issues that are barriers to doing things. Of course I'm not a psych working with him, just offering a possible venue to support progress. If nothing else it may engage him rather than burdening with the expectations.
reminds me of myself when I was 16. I stayed after school in a library staring at my homework for hours trying to do it but it never got done. Alternative School was a life changer for me, could help your son too.
@@hayuseen6683 worth a try. Thanks
I think I mostly agree with what you're saying. This will probably be a typically long autistic rambling comment, and it's just me putting my thoughts into order, as much as anything.
For me, the name definitely sucks (as do many and my GOD I was so grateful to see you use the term situationally non-speaking because don't get me STARTED on "selective mutism" as a term). I feel like what you seem to be describing for much of the video as being labelled as PDA definitely isn't what I understand it to be (for example, the Stormtrooper and Vader stuff - that's not PDA, that's just being autistic and wanting to be sure). In my experience, PDA is very different, where these "demands" might even be things that the person WANTS to do, but the fight-flight-freeze response kicks in and their brain just goes "nope". The "demand" is anything that takes control or autonomy away, even if it's a thing that they originally wanted to do because that adrenergic response has kicked in and the only way that the person feels they can manage is to not do it, and the more you push a person, the harder their brain reacts by pushing back.
Sure, you could argue that it's just a subset of autistic people with different levels of anxiety around stuff, trauma, and RSD (and my GOD those are a horrific mix - if you want to trigger mine, just accuse me of lying, of thinking, doing or feeling something that is the complete opposite of what I said, or assume to know what I'm thinking like you're a mindreader and accuse me of being malicious or duplicitous when I deny it).
To me, it seems like there's this more easily triggered flight or flight reaction, but that's literally all it was meant to represent. The thing is, often the things that might help other autistics (like careful explanations, expectations, talking, discussing to encourage them to explain their fears or worries, etc) just make things worse for someone with a "PDA profile", because that feels like just more pressure.
Does that type of experience I describe exist? In my experience, absolutely. Do we all experience some demand avoidance as autistics (and probably regardless of neurotype)? Absolutely. Is the name PDA being misused and wrongly applied by people who think it applies to all autistics and only them, and who are mislabelling a genuine lack of understanding with this kind of neurobiological response? Of course, absolutely, it's like they can't help themselves!
But that doesn't mean the experience I'm describing doesn't exist. For example, knowing that you like a food but being unable to eat it, because someone suggested it - that's not rational. It's not even a conscious desire to not eat it. Or knowing that brushing your teeth is good for you, but being unable to do it without melting down because your brain is just saying no - not because of sensory issues, or lack of spoons in general, just because the thought triggers this powerful response to the unspoken demand, even if it's from your own brain. Or planning to go to the beach, because it's a safe place for you, but then having a panic attack and melting down because you said you were going to the beach and now your brain is saying NOPE, even though you desperately wanted to go. There IS no "good" or "rational" reason that can be identified that triggered those feelings beyond "this feels like a demand that is taking away my choice, and my body is freaking out about it right now". Now, while I agree that that's STILL a "good" or "rational" reason to say no, personally, it's not one that you can reason out. And it's also an extra-frustrating one - not just for the people around them, but for the person themselves.
I can understand why, if that's not a huge part of someone's daily experience, then it can be hard to recognise how big of a part that can be. The idea that your brain suddenly says to you that you can't see a dear friend of many years again simply because they said "Don't forget about xxx," as they say goodbye, and your brain feels like that's a traumatic demand, regardless of if you know that pretty much everyone else wouldn't feel that way.
Trust me, I am absolutely not one to dismiss the effects of trauma (including from so-called "therapy" that explicitly trains a child that they're not allowed to say no, they MUST do what an adult says, and with a smile, that they're not allowed to show or express discomfort - physical or emotional - or refuse physical hugs. etc - can we say grooming, anyone?), RSD, mental health issues, general lack of spoons/tickets, sensory issues, general overwhelm/ overstimulation, other neurodevelopmental differences, other causes of dysregulation, alexithymia, proprioceptive and interoceptive issues, etc. and all of those things definitely can worsen the experience. I guess what I am saying is that, to me, PDA is just, in fact, a thing where some people on the huge spectrum of autists struggle more with those things, in the same way that what was called "Asperger's" was just a subset of autistic people that fit a very specific profile of part of the autistic spectrum.
For me, the biggest example of the difference is between my friend's two kids. Both have issues with food.
Child A's are primarily around sensory issues, on top of wicked levels of ADHD and terrible interception, so they don't feel hungry or thirsty until they're about to pass out from hunger or thirst. They can be gently cajoled into eating or drinking _something_ if given options to choose from, or a reminder that they will end up feeling crabby, dysregulated and physically unwell if they don't eat and drink enough.
Child B, on the other hand, is what would probably be described as having a PDA profile as I described. Their diet is extremely restricted, and if you try to encourage them to eat something, they will just eat less. If you explain to them that not eating will make them feel unwell, or whatever, then they will eat even less again. If you even just make food that you know they love and put it beside them, they won't eat it. Sometimes even when they are hungry and ask specifically for something, giving it to them can feel like too much of a demand, and they can't eat it. Giving options is even worse, because then they have to make a decision and that is even more paralysing and emotionally fraught. And if you push them enough, they will end up unable to eat that foodstuff in the future, because just the idea of it becomes associated with that demand for them to do something, and they have, in the past, gone without eating for weeks at a time as a result, outside of "chocolate milkshakes" which were actually high-calorie replacement drinks that thankfully they enjoyed. They've now started refusing to take the medication they need for unrelated medical issues, and again - the more you do to find out why, to explain why they really need to take it, the less likely they are to do so.
Regardless of the cause - whether it's extreme anxiety, fear of failure, perfectionism, alexithymia, RSD, having a lower threshold to triggering a trauma response, or whatever - kids with the kind of "profile" that Child B has require a different kind of interaction and that's fine - I think that's how it should be for all kids, that their individual needs should always be considered, regardless of neurotype. But I think it's also good to recognise how and why these differences are presenting themselves and figure out the most helpful ways to manage those responses. Giving it a name perhaps helps people to find others in a similar situation but at the end of the day, it's still all autism.
That said, I absolutely agree with all the things that you explain in this video that are down to communication issues, the double empathy problem and the way NT society likes so much to talk over us and treat us as broken.
That's just my opinion, though.
Omg wow wow wow - such a powerful video
I was diagnosed with asd last January 2022
And came across pda last August, I must admit I related due to not being able to “make myself” do certain things. I am frozen unable to proceed and couldn’t figure out why I can’t bring myself to do things - self care being up there on my list of things, as well as manage bills, and even morally think I should be paying for things like water that are essential to life but giving billions in profit to corporations when that’s not how it should be. Pda seemed the answer but I hated the term “pathological” that didn’t fit. Watching this makes so much sense. You’ve captured so many things that are part of it and it would seem as with many things in research the reductionist way of breaking things down lacks the intricate details that are needed for the phenomenology aspect of experience
Much too simplistic, but of course very useful for creating another tick box to shove us in.
The miscommunication is massive and I hadn’t fully realised how much that’s been part of many of my struggles and still is. It’s physically painful not being able to get someone to understand me - when logic tells me ie true call the different ways of explaining something, used all manner of different words or synonyms, yet still doesn’t work. I’ve thought it was me, I’m only now accepting like you say communication is a two way process with both parties being involved
Thank you thank you this has really helped me today
Thank you SO MUCH for making this! I cannot express how grateful I am for this video.
I’ve had so many misunderstandings. When I want or need someone to understand what communication is like for me, I can have them watch literally this entire video. This video is EXACTLY what I’ve tried so hard to communicate to employers, managers, co worker, friends and family. And it takes a moment for even the most open minded to start to get it. Most never do. One of the most common phrases I’ve heard is “why don’t you just….” or any typical response to the misunderstandings you presented.
This is what I like about psykology it changes all the time,first teaching us how to say no,and then saying no to things you don't want once you get to know yourself you get handed out a PDA diagnose ,the only problem is this could damage un aware person believing they migth be PDA when they actually been ppl pleaser manny years and learnt to say no and haven't learn yet how to balance it
So true, illogical brain torture and very damaging to self esteem (what left of it there is).
In school I was told to finish an ICT task off at lunchtime with a teacher, so at lunchtime I go to the teachers classroom, thinking she's expecting me. She didn't have a clue I had been sent and I felt very embarrassed.
I was told to wear a Santa hat for singing in the choir for the Christmas fair, I do as I'm told and feel really foolish because no one else bothered to wear a Santa hat.
You don't know what to expect when people give you instructions.
And sometimes people leave off important context, I was told to go into school for a revision class while on study leave, nothing was mentioned about uniform, but you usually go to school in uniform, so I wore it, and was the only one wearing it. I was saved from a similarly embarrassing situation of turning up in uniform for before school cross-country, by my mum ringing the school and asking the relevant teacher about whether I should turn up in uniform or not. As a result I put my uniform in my PE bag like everyone else doing cross-country. Thank goodness for my Mum's instincts.
You've got to learn to ask questions so you know what's going on, instead of trying to guess and maybe get it wrong.
Recently awakened au(DHD)tist here. This video put words to so many of my childhood experiences, from being called "lazy" for trying to figure out what task was desired first, to being told that I was "back-talking" when I was asking for clarification or trying to figure out if there was a better way to meet the goals of the person asking the question. Also as a "gifted" child, lots of people were frustrated that I seemingly miss interpreted things intentionally or acted out of spite. Honestly I'm currently having a realization as I write this out... I think the reactions I've recieved from people for doing something the "wrong" way are a significant factor in why it's taken me so long to finish my dissertation. 🤯😖 thank you for making this video.
I'm really happy to have found your channel and every video of yours has provided an insight into who I am. Advocacy is really important to improve acceptance and our lives as autists. Keep going Quinn, I can't thank you enough.
The label is silencing
I'm so happy I found this video. I've been masking 100% of the time up until 3 years ago. My entire childhood was simply getting hounded on about being conflict-prone and being a "party pooper" by my parents. Looking back on everything now, I realize I was genuinely just trying to look out for my poor parents who were self-destructive and toxic. I only wanted them to rethink the consequences of their actions. Reconsider what my other parent meant. I've always been exhausted. I've often had no energy left to fulfill any expectations after school and yet, I still would stick my neck out there. There's no reason in my mind that says that a child cannot have the answer to something. And in the worst case, if I'm wrong, teach me. It was always about being stubborn and uptight rather than compassionate and concerned.
I have so much trauma to work myself through and I want to do it through a lens of advocacy! I am strong and capable. In the right circumstances, I want to say no because I need the energy to say yes.
"I want to say no because I need the energy to say yes." Love this.
What trauma do you have?
I am considering the PDA affect as being behind my panicky response to demands and consequent avoidance. Demands feels very intrusive to me and I am quick to panic when presented with everything from tax time to bill payments to opening emails. I have PTSD and have to consider the influence of trauma when I perceive intrusive demand and my panicked response to them. It's an interesting prospect.
I am 50 and looking very seriously into an autism diagnosis. Being in the States, PDA isn't even on the radar so my masking, distaste for imposed structure and routine, even my ability to make eye contact are at odds with a traditional autism diagnosis here. But as part of the PDA profile, it all fits! Especially when taking my ADD diagnosis into account. So, when I came across this ridiculously named collection of traits that fit me so well, I didn't give much thought to the potential for abuse inherent in the profile. After being branded with borderline personality disorder at 13, I'm kind of past the pain of the label and far more interested in how it can help me understand myself and others. But sir, I sincerely hope your concerns are taken to heart in the UK because if PDA does cross the pond in its current iteration, it will be a disaster. Thank you for your logical insight and passion as you advocate not just for neurodiverse people, but for clear communication between all people. I appreciate that you bring not only a critical mind but a big heart to the conversation.
I'm autistic, and I absolutely HATE being controlled and told what to do... I like being able to have the freedom to do what I want and need to.
That, however does not mean I am without empathy.
Also, I do currently have a job.
Me too I have both ASD and ADHD
It's weird how questioning a statement often leads to people thinking you are being obstructive or taking the piss.
So nice to see you pop up in My RUclips subscribed channel playlist again and with another cracking video too.
Nice to hear your mellifluous voice once more ;)
It’s a great narration voice! So much of this content is undiscovered gold for many people. I recommend this channel all the time because it has helped me understand a lot of different issues at real depth. No superficial content here. It’s all well structured, introspective and candid deep dives.
When they find us they define us. Then everything after that is pain 😔
Hi Quinn. As someone who has a physical "tongue tie" (mentioned at 14:43 In the video, I am 60+ years old) I can actually agree that it does cause communication problems. Even before I knew I was Autistic (very late diagnosed) I had problems with speech. P.D.A. is another phrase invented to attack, I totally agree with this. Thanks for the video and good to see you back
The Darth Vader demanding the trooper had me smile but , absolutely perfect example. I have adhd but my questioning of the illogical requests being made to me would be met with absolute hostility
As someone with PDA, due to abuse related to being Autistic, Autism is not the cause of this issue, the people around me who seized power and abused it are.
Expectations/Demands terrify me, set off my fight or flight and it makes working impossible. It's only set off in certain circumstances (often ones where the demand is unreasonable, and from someone more powerful), because for me that's when I'd get abused, when I failed to meet those expectations.
If the pressure on a request is too high, I'll outright deny it. It affects my life in many, many ways, but it was never caused by my Autism, and it's not something I've ever really noticed in other Autistic people.
As someone with communication style requirements and needs socially, I certainly appreciate something to label it, a shortening to use, but it has NOTHING to do with Autism, and I'll go to my grave chanting that.
I flunked high school geometry because no one could explain to me why I should just assume theorems were true. Geometry, as presented in high school, was so absolutely stupid that I refused to participate. As an adult, I have a few very useful formulas that I use often in everyday life but I learned them in my own time and as I saw a need for them.
Great to hear from you again, Quinn! Another eye opening topic too.
Great to see you back. Another interesting video. Thank you.
This video seems to wilfully ignore what PDA actually is & conflate it with saying "no"! Executive dysfunction is a feature of autism, ADHD & some other ND's & requiring more detail is also common alongside this, but neither of these are specifically PDA traits.
PDA people use a huge range of strategies to avoid demands, whether the demands are externally imposed, or internal (eg hunger/ thirst). PDA people will even avoid things they enjoy & want to do, if they're perceived as a demand - this can vary depending on how emotionally dysregulated the PDA person is.
What is described in this video is a rational worry that vulnerable people may be exploited or gaslighted, but it's not describing PDA at all. You say you've spent a lot of time researching PDA, yet you have missed completely what it is - perhaps because you aren't PDA yourself?!
Thank you for commenting. The intention of this video was to highlight a growing problem, not to describe PDA itself. The description reads:
"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".
A follow up piece describing the other side of the story is in the works and if you'd like to offer any suggestions of what you'd like to see included please get in touch via the autistamatic website.
I very much agree with Laura here. My kid has Autism & PDA alongside type one diabetes which is a terrible demand on anyone. Even though her medicine keeps her alive, she will avoid it because of the relentless demand. She says no to something that keeps her alive, she’s still doing this at 14, she’s never once done her medicine independently of me. A living daily hell for all.
I'm very glad to see pushback against this term. It sucks because I know ND folks who embrace this term meant to describe a very specific relationship to life's requirements (born from the lack of clarity left by double empathy problem), and the resulting anxiety that comes from asking anything; yet, the PDA label, alongside the ODD label, I struggle to accept the premise in the wording because it implies there is "no reason whatsoever" for whatever the so-called "opposition" or "pathology" is. It's one of those things meant for unearned control.
I feel there might be a generational component too, wrt how to answer to hierarchy. There is a widespread shock among older generations because they perceive younger generations as "disrespectful", when 1. disrespect is a constant across all generations regardless how much they won't admit it, 2. what is seen as "disrespect" is in truth asking questions to clarify.
Your suggestion of replacing "pathological" to "rational" is on the money. It's an expected answer to consistent traumatic communication.
“To regard someone as pathologically demand avoidant without first eliminating *EVERY* *other* alternative is no longer morally justifiable nor scientifically wise.”
The hallelujah breath I just heaved.
Thank you for this incredibly articulate description of what I've experienced for over 50 years. Having been only recently diagnosed as autistic, I've spent most of my life being told I was "difficult, rebellious, uncooperative and not a team-player". Well, maybe I AM all of those things NOW but that's certainly not how I felt inside for all those years. In a way, being told you're feeling or reacting in a way you're not is akin to gaslighting. It has a crazymaking sort of effect. I'm a very conscientious, hardworking person who cares about the details of my work. I always thought that was a good thing, but most people seem to "read me" wrong. Anyway, I'm retired now and my general attitude is "screw everyone". 🙂The more I learn about autistic people the more I believe WE are the most healthy people out here. Maybe we could all just "Atlas Shrug" outta here together?
I think it exists and probably is connected to autism for some people but "pathological" is the wrong word, since I first heard of PDA I preferred the definition "Persistent Drive for Autonomy", I do have an instant reaction to orders and demands and need to be asked in a way that makes it clear I have choices, I fail to see hierarchy and treat everyone on a level field until they prove to me I can perhaps learn form them and they've gained certain respect that I'll comply with them. Job titles and other people's praise mean little to me until I've seen for myself that it's true. As can be imagined this made school really difficult lol teachers expecting automatic compliance was a non starter. I am quick to decide who I can work with or not but there doesn't seem to be a way to compromise when it's someone I don't get along with.
I agree that it's a very misunderstood condition, i was diagnosed and told i have specifically autism with the PDA criteria (in the UK), but that was it, no one told me what it was, or how to cope with it, just "you have PDA, now off you go". No one seems to be able to tell me what the hell it is or how to deal with it. I don't think it's just a communication problem although that is likely why i avoid 15-20% of all demands. The issues i have with your explanation is I have problems doing tasks I enjoy and want to do (listening to music, playing games, etc). I want to do them but i feel there's an important but unknown reason I can't do them. I also struggle greatly from being able to feed myself which gets worse with hunger, but i have no idea why and your video sheds light on some things but not all of it. As with most things, more research is needed, i just hope soon I can actually get some support for it because there's so much i'd love to do but a million unknown reasons I can't do them.
I seem to have the opposite issue to being demand avoidant in that I do everything im told or asked regardless of if want to or not i need more specific instructions and ask for clarity but I nearly always do it but that causes problems as well I can end up resenting the person who tells me to do something I really don't want to do im too compliant and naive which could lead me be easily manipulated
People pleasing and being co-dependent is sometimes due to trauma and complex ptsd. Being raised by a malignant narcissist was a huge part of the same experiences I had.
This is a beautiful video. I will say i think some of my avoidance is more pathological than simply a lack of information, although I also struggle with unclear instructions and disagreeing with “superior’s” decisions. For example, I have an extreme difficulty with getting up early, especially for meetings or certain classes. I will call in fake sick a lot. Most of the time, though, I do think it’s more of what you are saying (and I usually can push through this and do it anyway; getting up, however, I can’t do).
I was worried about PDA the first time I became aware of it. Some with PDA seemed to act as if they were super human - too good for society. I have also been on the 'communication is everything' journey and it was trying to work this one out so fastidiously that led me to have an autism assessment and get diagnosed this year at 55. Communication is everything. Relationship is everything. They both are possible, with a lot of self awareness, compassion and dedication.
Thanks for taking the time and energy to talk about this issue 👏🏻
I have always resonated with the 'persistent drive for autonomy' definition of PDA. I've never even seen it connected the way you explained it and I'll need time to process this. But I’m grateful for this new perspective and will listen to this again.
I greatly appreciate what you are doing! I often watch, enjoy, and even relate to many of your videos. Considering you allowed us to bring up suggestions for discussion topics, one that I would like to be covered is possible autism within the incel community as well as sexual frustration due to social anxiety and whatnot. Thank you again for everything you are doing. It is giving me good insights and closure.
This is not an accurate representation of PDA. The typical response to a demand is not to say “no” first or ask questions but rather to make excuses or distract the person making a demand. Also the narrative is not that all autistic people are PDA but rather that a small subset are. In PDA demands cause genuine stress and this stress needs to be accommodated.
I found this video so annoying because it takes the name at face value. Avoiding demands only comes once we realise the meltdowns that come with accepting too much.
The real issue is the internal stress. PDA is such a dumb name.
I think you're agreeing with the video - what's being discussed is the misinterpretations about PDA used by others calling it PDA.
That was awesome. Thank you for that. I’m going to give this to every Neurotypical person when this subject arises. Thank you so very much for helping us keep up the good work..
Oh wow! This needs to be seen and heard *everywhere*! Thank you for explaining so well how harmful this concept of PDA as an autistic trait is.
Wow - quite brilliant dissection of so many issues affecting not just autists but society as a whole. Thank you.
Very informative and interesting. I really enjoyed hearing another perspective on PDA, well articulated 😊
Strong point about the loss of choice and the ability to say no. I didn't think this "PDA" stuff could be twisted so badly. Seems to me that the danger of it being too present in the workplace is that it's essentially non-experts doing guesstimation diagnoses. That's about as fair as anyone (autistic or not) diagnosing someone behaving in a toxic way as a narcissist, and I know I've been guilty of that one.
The fairest approach (if a judgement has to be made) is not to assume too much too quickly. Because it might not be PDA, there might be a rational reason holding us back such as the one you suggested: a lack of clarity in what's being asked. Sometimes even if it's clear, there may be an anticipated double standard and/or conflict we don't know how to address without sounding rude. In either case, I'd think the motivation behind our eccentric behavior is to avoid cruel and unusual punishment.
Brother you are so well spoken on things I live out on a daily basis but struggle to put into words as clear as you formulate. I’m brilliant in a creative and problem solving way, you are brilliant in a descriptive way (please note these are not limiting comments but rather strengths I’ve noticed and do not indicate a lack of other strengths. You may have my strength I listed, I however do not have yours).
This makes me appreciate your videos all the more.
I've had so many bosses like Darth Vader. I'm not Autistic as far as I know, though I do have ADHD. My thought is that there are just too many people who don't know how to communicate properly or do not consider things from someone else's perspective, who just assume that everyone thinks exactly as they do and expect them to be mind-readers OR who just deliberately want to make things difficult for others so that they can feel superior.
I'm unsure if this counts as being lonely, I dislike small talk and sometimes years before I've had people or strangers talk to me, and they seem somewhat happy to have someone to speak to.
Maybe it's the way I look, that sticks out or combine of different things.
This video also empassioned me and gave me a lot of hope!
I cannot thank you enough for this astonishing presentation, so accurate, advocating for understanding and compassion. I am discovering you today and you simply made my day.🙂
RUclips recommendation sent me to a video of a "PDA expert" who is trying to get it added to North American lexicons further by describing executive dysfunction and calling it PDA. Thank you for talking about this dumpsterfire of infantalization.
Oh wow. My heart cracked when I read that. Just another popsci author selling mind vomit I guess :(
Sounds like the so called expert is hijacking autism terminology and mangling it into something it was never intended to mean.
Executive functioning challenges are not pda
@@Dancestar1981 okay, so then with the approach they are taking they are just gonna wind up casting a net that tells a tonne of people that their executive dysfunction is PDA? I am deeply aware of the limits of my own experience, so I ain't gonna make some judgement about whether PDA is a thing of its own, but I can assure you that the approach I am seeing thus far from people talking about it is going to seriously cause issues for people who are needing help with executive dysfunction, but run into their overly broad PDA net first. Cause I'm sorry, but after a lifetime of people moralizing my executive dysfunction, these people trying to say that its PDA that I'm experiencing, by failing to actually do a decent job of describing what they are talking about, suggests that the "leading PDA experts" have no place in this field.
With Rejection Sensitivity Dysphoria - anyone suffering from trauma and abuse and social anxiety is being told that they are hallucinating issues and that they are always the problem.
I self-isolate in the safety of my home. Most times I physically can't "make" myself do even the simplest and seemingly most rational things.
I'm certain trauma plays a huge part.
I go out once a week with a carer and panic when I hear the car pull up! It's like Light's ON! Cameras flashing.. You are now on display! BEHAVE APPROPRIATELY!
Then it's this stressful "trying to be polite" trip to buy food. The lights, sounds, people and food packagings often send me into some kind of (generally) masked meltdown. Usually just crying and begging to be taken home. (The huge meltdown generally happens days later).
In the past I've had carers refuse to take me home and say, "Now, now! Why don't I get you a nice cup of tea!"
I then just go into shut down and can't communicate - which makes them think I'm "over it" and they've "won."
Don't know what happens after that, but I go into some dark space, maybe disssociate .. find myself in back in the car on the way home with a glaring, barely civil care worker.
Recently this "care" company was bullying me to accept a certain funding package. When I worked it out, it seemed the package only benefitted THEM - not me - and I would actually be WORSE of than I am now.
Anyway they rang me 4 times trying to get me to accept the proposition. Finally total and utter psychotic "f you you pack of c's" meltdown ...
I was in a "smash things, plants, food, you name it" against the wall type space for days.
Not sure what happened, but amazingly I've now been given a carer who doesn't tell me or even hint that I should do anything. I just direct her.
As I write this I feel it all looks petulant and bratty. 😢
But I have this "thing" whereby my body, my actions, my thoughts were under such extreme control growing up - nothing I ever did came from "me" - but from my jailer.
I know childhood abuse (I experienced other stuff as well) doesn't cause autism.
But in extremely sensitive people even subtle indications that they don't "matter" and to "survive they must comply" I feel can cause PDA.
Sorry for going on and on .. But I just found your channel and subbed within a minute and a half! 😂
AA with two ND children. I've been told by actual autistics that my son fits the PDA profile. He's almost 12 and I've been struggling for years to get him to just do basic things that really do not need additional explanations and I give him the additional anyways and he still does not follow through, especially around boundaries. I need help understanding what I'm doing wrong in my approach or if he's actually truly PDA:
* Do not touch things on the mantle (Halloween, Christmas, or photos during the rest of the year). They are there to be enjoyed with our eyes not our hands.
* Do not go into a specific room (this can be my home office which is my own personal space and contains many things that are triggering to him).
* Do not lay on the floor in the bathroom because there are germs and germs make you sick.
* Do not jump on the arm of the sofa, it was not designed to support that.
* Do not stand on the lid of the toilet or the bathroom counter as they can not support your weight.
This video seems to take a very narrow notion of "demand" as discrete instructions delivered from one person to the other. I don't doubt that the PDA label is misused to pathologize noncompliance in these contexts, but the concept of PDA has also been extremely informative for my self understanding with a broader understanding of demands as expectations that can take many forms, including goals I have set for myself, holidays, bodily cues and more. I appreciate the potential misuse of the PDA label explained here, but it would be more fair to at least acknowledge that many PDAers experience a wide range of expectations as demands, and that they do find it helpful as a self-identification. I hope the follow-up video includes this perspective, the omission here actually seems to enforce the perception that PDA is strictly about noncompliance with others. I could easily watch this video as come away believing that is what PDA is.
when i am asked to do something by someone being utterly vague with there request, i often say "can you be more specific with your request?" and it oddly makes people get angry at me when all im asking of them is to be less lazy with there request and tell me what exactly they wish to be done. yet the few who have been specific with me have found i have done the job and to a better degree than neurotypical people and have been praised for the work i did however it made the neurotypical people angry at me.
i have found when people ask me to do things and i dont fully understand the request, i have to stop and think about what exactly they wanted done, yet sadly most of the time there request is so vague and worthless i simply cant do the request and they get angry at me.
Imagine being born blind, in a world where no one knows what blindness is.
How many times would you have to hear "Look at me when I'm talking to you!" or "Watch where you're going!" before your response became an immediate "No."
I really like you thoughtful and insightful videos. Very enlightening. I'm binge-watching them.
You hit Soooooo many nails on the head in this video. Thank you.
I really enjoy your videos. They are engaging and informative in helping me understand autism better!💕
I believe it’s better explained as a pervasive drive for autonomy. It’s like anarchy in my nervous system . I do want to do the tasks most of the time but I literally have to know the reasons i want to get things done while doing them and continuing to remind myself of those reasons while doing the task otherwise they don’t get completed or I just avoid them without consciously choosing to avoid them. I completely understand your views on this and agree with the concerns you have. However, it shines light on ways the whole world needs to change their approach and views on ANYONE who is struggling in life FOR ANY REASON. It is all mental health problems. And it is not a good measure of health to compare how people function in a society that is not constructed for the benefit or success of humans in a mental or physical capacity. I have to take great measure and care and consideration to actually do whats right for my mind and body… it takes a lot of mental and physical effort. To judge anyone else for how they are sorting their way out of the muck and mired landscape and to make enough money while doing that… this is just cruelty. Maybe THAT (cruelty) is the real disorder.
My mother with PDA refused to call the doctor when i got an acute suïcidal psychosis. It was terrifying . Off all people on the world in such disaster, your own mother refuse to help you. PDA can be very dangerous for family if its in the parents.
Hilarious movie by the way with Darth Vader :)
When I was 3, my mom already said that my first response to anything is no. She used to say my mindset was, " I don't know what it is about, but I oppose ".
My child was quite alike when she was very little, but I handled it as much as I could based on my life experience. Unfortunately then, social pressure telling me I was a bad mom, made me too strict, a thing that now I regret.
We are not diagnosed, but we both clearly are ADHD and me PDA for sure, and probably autistic. We have no diagnosis as we are females 45 and 21, and in Argentina doctors know nothing about adults
Superb. I often had this paralysis of understanding how to start to please people. I wanted to please them but the more I would have people blow up at me for doing what they wanted the more I would be faced with paralysis of wanting to avoid that by clarifying. Then they had no patience and would explode almost immediately. It felt like if, when they said "jump" if you asked "how high" you would get screamed at and punished for not cooperating. It was insulting and perplexing to be told you are fighting them and are selfish when you know you want to please them and will go to extra trouble and are tolerating more and trying harder than you know they or anyone else would. Although everyone else would say "forget you, you cannot be pleased no matter what so get lost and take your unjust punishments with you" you still try and get punished for non-compliance and selfishness by a bunch of screaming, impatient., seeming lunatics. My childhood was deeply unhappy and it was not due to PDA it was due to the adults around me as a child being infants while I felt like the only adult in the room. Everyone else was impossible so I had to be the calm reasonable one every time while being blamed as the problem. It was slow work over decades just learning to navigate this. Ultimately, only being an adult and not a powerless child at the mercy of seeming infantile morons worked. Then it is a very slow process of trying to develop ways to work around people once you are old enough they now take the "you are old enough I should not have to explain this so I will not tell you even if you ask me point blank" attitude.
This is an interesting perspective . I thought I resonated with PDA but this makes a lot of sense as well. Thank you.
As someone who's just discovering all this in late middle age, because of self-exploration due to a Royal Commission of Inquiry into Abuse in Care here in Aotearoa, I think your interpretation may be completely literal and, therefore, narrow. However, I think your demonstration was an excellent illustration of what I experience (I can't speak for others). Perhaps, in the cause of accuracy, the condition should be called RDA instead of PDA?
I must also say, though, that in listening to you for the first time I do like the way you present. You don't speak too quickly and you pause between points which allows the brain to keep up. I can't count the amount of times when, as a Toastmaster, I'd bang on about this to others who continually failed to realise this. It was something I learnt as a former radio broadcaster so thank you for allowing our brains to keep up.
I do take your warning about where this is all going, however. As someone who also has a lifelong visible impairment this is - unfortunately - familiar territory. It illustrates the need for those who are affected to be in control of the narrative: 'Nothing about us without us'. Since time immemorial our differences have been, and are being, used against us. The need to control our own stories and lives is slowly being recognised, but it's too piecemeal and too sporadic to be effective long-term. Taking back one's power is made more difficult because we also have to try to live in a hostile world and therefore have les energy to devote to this imperative. I'll look for your part 2 with interest.
What you explained fully resonated with my experience as PDA ASD and also gets at the heart of ODD, another misnomer I can't stand the same way. Great job on rhis piece.
Usually when somebody wants anything from me that was not in my schedule the first thing is to say "no". That might change after looking how I can adjust my plan. But at start it is no, as it changes what I am planning to do. Does that count as PDA?
No this is an autistic trait where autistic people have trouble with changes in schedule. PDA has multiple traits that aren’t related to demand avoidance and you need several of these to meet the description.
I've only recently heard if this PDA term. You have clearly explained that is very problematic. I would be described as Autist with PDA. But, I am a well-functioning, self-employed, family man that daily takes on a variety of complex and lofty demands. Though, I have never been able to work for others. Hence the PDA label. The reasoning would be a lengthy discussion, but in summary, for me it's PTSD and anxiety of ridicule and rejection, plus the illogical nature and rules of the NT workplace.
Reading the responses there does appear to be a variety. I would fit in the "Persistent Drive for Autonomy" group. Though, there do appear to be others that really do lock up with demands, even demands of themselves.
the fact that it's really all about accumulated fears, struggles with communcation and past expereinces driving us to take issue with what is expected of us, and label it as a sick aversion to do what you're asked for, rly shows what the pda profile is for - i would love to have my anxiety about demands addressed, held accountable and supported, but dammit if the only current "explanation" around this anxiety is the "i'm a little baby who can't do what they're told ever disorder" then I DON'T WANT IT
You're right to point out that assuming most autists would show PDA is false as the non-compliance to social norms can have a variety of reasons.
On the other hand there are PDA "carriers" who don't "seem autistic" at all but struggle a lot with a mechanism in their head which just won't let them do what they understand clearly and would like to do but can't bc doing it threatens their autonomy and wellbeing.
We have learnt so much about ourselves and we are still learning so much about ourselves. Quinn is not disputing PDA. What he is saying, is that before deciding that PDA is the final answer. Let us learn more about ourselves. So we can understand ourselves better.
I know how it feels to have people decide that my diagnosis was the final answer to understanding who I was. Please don’t let it happen to PDA.
Not sure why but I wasn't getting notified or recommended any of your videos for a while now.
Some of us do relate to PDA. Some have re-termed it as persistent demand for autonomy. Basically, demands make us lock up because it seems like our ability to make a choice is being infringed. It's seemingly irrational. I could want to take out the trash, but if someone asks before I can do it, I feel like i can't do it because it's no longer my choice. That's irrational because I was planning on doing it already. Weirdly, I only have this problem in personal relationships. I deal with frequent requests at work and they don't bother me.
Thanks for commenting Emmet. I think you'll find the second part of this series quite relatable.
Edit: Just watched your other video about PDA so I see now that you didn't intend to dismiss PDA. I would have liked some more acknowledgement of the benefits of PDA as a concept in this video even if it wasn't covered in depth. Going to leave the rest of this comment intact because it was my initial reaction to this video and still worthwhile in my opinion.
This feels like it may also be dismissing PDA somewhat where some people do identify with it. It can help explain for some people (myself included) how we can both want to and be capable of doing something you ask of us and yet become incapable of doing the requested task. The main distinction should be understanding that PDA is not something that can be solved by yelling or by therapies like ABA. It is not a character flaw, it is a neurodivergency and treating it as a character flaw leads to abuse (same as how treating any autistic trait as a character flaw leads to abuse).
I've not been given a profile of PDA -- but that's more down to the UK's diagnostic system, than anything else as I certainly seem to show signs of it. It doesn't seem to be a communication thing for me however, a lot of my PDA seems to be outside the social realm.
For example, in education, whenever I had to write any kind of essay I always felt totally stuck. I can write well and my grammar and comprehension are fine -- but, no matter how well I understood a subject, as soon as there was a _demand_ to write, I could never get over the overwhelm enough to actually do it. I quit numerous courses because of this, and it's only since getting a diagnosis that I now understand why.
Another, for me, is around household chores -- I am as untidy as you can get. My special interests (like my cameras and my vinyl records) are neatly organised, but the rest of my home is often a tip, as is my car. I definitely don't fit the profile of a super-tidy and organised autistic -- even though I crave to be that man.
However, this all might be because I also have ADHD, as I always find a distraction or impulse thing to do to save me from the chores and demands of life.
Could that be about rejection sensitivity? I know that a kind of porformance anxiety can stop me from doing thins I want to do and am good at and it usually has a lot to do with a fear of not meeting the mark. I should contextualise that by mentioning I was a smart kid and so I often got the ‘could do better if tried harder’ comments that are common amongst people with ADHD but given that I was already often getting top marks it seemed cruel to say that. It’s hardly an optimistic situation to either do as well as you often do, or be considered as failing to thrive because you’re not i]getting top marks fir some reason. You probs would get something out of reading about ‘rejection sensitivity’ if you haven’t already, because it might fit.
What I loved most about this video (I love all of Quinn’s videos. They are top tier informative and clear) was when he mentioned that misunderstandings and assumptions about motive are often at the heart of miscommunication. I know for sure that people often interpret tardiness and other forms of unreliable as just not caring enough when it’s often the polar opposite for me. If I care about making a good impression, doing a good job etc then that’s often when executive dysfunction kicks in and makes a mess of it. I just hope that the people I’m dealing with understand that I’m not dissing them and I’m also not ‘meh’ about them. I am just prone to stuff up without cues or a hard coded routine,
@@freedahlogic8368 I suppose that could be a part of it, but I don't care about rejection when it comes to writing in other areas -- like arguing on social media for example. :D
I'm more sensitive to rejection when it comes to the opposite sex -- but I think that's a human trait rather than anything ND.
Thing is, everyone is different, I like this channel, but there are plenty of things that don't personally apply to me. That may be because of ADHD being potentially dominant, or it could be that I'm just an individual and one size does not fit all.
I know it's a small channel and all but it's odd not seeing anyone comment on how he just...vanished after this.
Whether he makes more videos or not, I hope he's okay.
This video relieved a TON of anxiety for me. Thank you. (Plus, the beard is epic)