Unpacking "Pathological Demand Avoidance" [CC]
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- Опубліковано 28 сер 2024
- As a disabled person, a lot of my life has been “you can’t/won’t be able to do that” or “no, you need to do it this way, your way is wrong”. I also experience this thing often associated with autism called “Pathological Demand Avoidance” (I prefer “Persistent Demand for Autonomy”) that makes me really good at ignoring that and continuing to do what I do, such as be an activist and make world history directing a show. But… sometimes it also gets me in trouble.
In today’s video we’re going to learn about what PDA is, where the term came from, what it can look like, and how we can accommodate for it in ourselves and in others. And maybe we’ll learn a bit about human nature along the way!
Sources & Resources:
@atpeaceparents
@livedexperienceeducator
@autistic_callum_
@drdevonprice
pathological demand avoidance in autism, explained - www.spectrumne...
original 2003 PDA study - adc.bmj.com/co...
2018 study - www.thelancet....
Check out my thesis! - www.disabledau...
Follow me on insta - / disabled.autistic.lesbian
If you want to support me financially, you can buy me a smoothie! - www.paypal.com...
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Autism Resources:
Ultimate resource guide - www.disabledau...
How to support an autistic person - www.disabledau...
Help! I think I’m autistic - www.disabledau...
Unmasking/How to Start Over - www.disabledau...
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My Music:
Fearlessly Different (Single) - ditto.fm/fearl...
Bold (EP) - • Bold full
Rewrite History (Album) - ditto.fm/rewri...
Alive (Single) - li.sten.to/alive
Start Over (Album) - li.sten.to/sta...
The Confused Linguist (Album) - li.sten.to/the...
Find me on Bandcamp - sydneyzarlengo...
Check out my #ActuallyAutistic playlist made of entirely autistic artists!
open.spotify.c...
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Hello my dears!
My name is Sydney and I’m an actor/singer-songwriter who writes music about my experiences being autistic, disabled, gay, gender fluid and in general, a human. My goal is to fill musical gaps and write about things people often forget to make music about. I’m also a vintage enthusiast and disability advocate (among other things). And, most importantly, my favorite color is buttercup yellow :)
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Facebook - / sydney-zarlengo-110498...
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Tiktok - / disabledautisticlesbian
Website - www.disabledau...
Email - disabled.autistic.lesbian@gmail.com
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I feel like I struggle with PDA on a daily basis but one method of getting things done has really helped me with burnout. I always try to make a list of tasks and place it where I pass by often, I don't place expectations on myself and I let the list guilt my inner demon. Then after passing by and priming up a bit of guilt, I ask it what the easiest task on the list is. Once I know the easiest task I ask the demon if it has a few minutes to prepare everything for the easiest task without starting it. Finally without hurrying I let myself prepare the task with the thought primed that I can escape anytime if I change my mind. The great thing is, half the time I get that ball rolling, I end up working all the way through it and completing the task on autopilot.
I agree with most points in this video and relate heavily as I'm a PDAer myself. I really appreciate this video! The one thing I disagree with is the notion that PDA is a trauma response. One of the reasons why is that if that were the case, the line between PDA and ODD would be blured or even nonexistent. Another reason is my personal experiences. I remember always having this instinctive reaction, but I was never treated any differently from NT kids as that's what the adults around me viewed me as, no matter how nonsensical that would be. I never experienced any less autonomy than my peers, I simply felt confused and frustrated when told what to do. I remember seeing my cousin clean up after our playtime as soon as her parents told her to and I felt so confused, so I took the toy box and threw it on the floor. I internalise my PDA heavily, so I've never actually been violent due to it. Anyway, if PDA were simply a trauma response, why would it prevent me from doing things I genuinely enjoy even when no one tells me to? Why did I refuse things I needed (like my pacifier, baths, food, etc) when I was a baby if it was acquired by trauma? I know this point is anecdotal, but I feel like claiming that PDA is a response invalidates almost all of my first memories. (I have an emotional memory so I remember my meltdowns and the reasons behind them from infanthood. It was always either sensory or demand based.)
Hello! Valid thought process! I think ODD/PDA are effectively the same thing, that's just my hot take, I've never been a fan of diagnostic criteria. But the trauma thing I think I have answers to - mainly that trauma can be little things too! The sensory experience of having to wear socks that are super itchy day after day can trigger trauma responses. As someone who used to work in early ed, I could see simple trauma responses with my three month olds. Not all PDA is "ah trauma get it away from me!", it can also be "ah! bad texture I hate it!" or "I don't want that sensory input right now!" Or the "I can do things on my own leave me alone!" that we see really often in little kids who are used to having zero autonomy. And just because you weren't treated differently/given any different amounts of autonomy than others doesn't mean that you weren't more impacted by that feeling of confusion and frustration! Clearly that was upsetting to a little you and you responded to it. The sneaky thing about trauma is you don't notice it until you know how to look through that lens and look back on things. Also it can very much [unfortunately] affect someone's intrinsic desires to do things - sometimes I very much want to do things but my own brain tells me how it has to be done and if it's not done that precise way it's not worth doing and then I start to panic and can't do the thing I want to do [e.g. I'm supposed to be writing a video I'm really excited about right now lol] And, for me, that's usually connected to the whole "if I don't do everything perfectly I am a failure because being a good kid was how I got respected" thing. Again, trauma is a sneaky little guy
I have a video on autism & trauma that might be helpful as well! Idk if that made any sense but hopefully this video will make more sense :) - ua-cam.com/video/kZ5Fp0bbBe0/v-deo.html&ab_channel=SydneyZarlengo
@@disabled.autistic.lesbian Hello there, thank you for the reply and heart!❤️ Your response made perfect sense, however it didn't apply to me sadly. My special interest is human psychology and so I've spent many years analysing my past trauma, which is exactly the reason why I disagree. I did experience people treating me differently and it was traumatic as it lead to abuse and isolation. However, even after having dealt with those traumas and for years believing that it was the reason behind my difficulty with for example going to school or doing chores. And yeah those are partly caused by trauma, perfectionism and social anxiety. But what never made sense to me was that it's sometimes hard to do things I loved if I scheduled it or put any sort of demand upon myself to do it. I remember once not standing up for an entire hour despite desperately needing to pee, my brain just refused to do what I told it to. When I learned about PDA I was sceptical but then I read the traits associated with it and BOOM its literally just a list of... Me..? A week before then I had a meltdown over how hard it was to do anything and how trapped I felt by my brain constantly refusing anything I needed to do. It's the worst, most debilitating experience in my life and has always affected me. You see, the main reason behind the abuse from teachers was the fact that I froze up when they told me to do something. It wasn't like I didn't want to do what I was told, sometimes I was even excited and suddenly just... Froze... The trauma came from the reaction of the teachers, grabbing me, pulling me away, yelling at me or scolding me for being lazy or stubborn when in reality I was so frustrated by the inertia. I think inertia a good word to describe it. It's not that you actively avoid demands but rather that any feeling of a lack of control causes either inertia, a shutdown or even a meltdown. Sometimes all 3 in that order lol. But what I agree with you on is that SOME characteristics are caused by trauma due to the response to your reaction. Like the fight, flight, freeze, or fawn. Some things, though, are more just very specific autism traits that not all autistic people have. Like hypercreativity, hyperempathy, a strong sense of justice, great pattern recognition, obsessions or special interests toward other people, and more! The pattern recognition and people-focusedness makes us harder to diagnose because we mask instinctively due to it. The strong sense of justice, hyperempathy and creativity are all used to prevent meltdowns. (People view us as manipulative in some cases due to these traits) Ofc this is just my personal theory because in reality no mental diagnosis is real but rather a social construct based on patterns in people's behaviour. Like neurodivergence isn't really real, we just have different brains and inherit mental traits from our ancestors. But because it's considered to be 'off', people feel the need to put a label on it. I find these labels comforting as I never got to grow up knowing why people liked me less. It gives me the strength and power to be myself without feeling bad about it. Anyway have a good day and I love your vids!
I too find the label comforting. I got myself tested, because I do have severe childhood trauma. I have a now ten year old son, who is currently diagnosed ADHD with a five year old diagnoses of ODD.
Outside of me being a single mother from when he was an infant to 6years old, which, was just daycare- my son never had any dramatic trauma, not like a child of the early 90's with drug addicted parents anyway- I have issues with certain fabrics- trust- it's tough but not trauma- I always gave my son as much autonomy as possible growing up. I wasn't treated human growing up, so I have don't my best to give my son that respect, because he is a person. I admit my mistakes, we talk about why certain things are important.
But I had to dress my fifth grader, like a toddler, to go to school today. I've had to put my 6 year old in a hold for 2.5hours at his first grade school before he got expelled and sent out of district. He'd trash the room, spit/hit teachers, all in the name of "being asked to do non-preferred tasks". It's gotten better over the years, but in times like now, when i can't get him to wake up, go to bed, eat sometimes... It's really awful. And every thing I say is wrong. I just want to help, and often it feels like my help, makes things worse. But even, I try reverse psychology. "Oh you can't brush your teeth in time no way, skip it!" He says, okay. Lol I can't win and I'm just so so so tired of seeing my son suffer. I don't know how to help him anymore. It's so hard.
My anecdotal evidence is that my PDA IS based in trauma. I had a parent enabled older brother who had multiple anti social disorders. He was 10 years older than me and used as an authority figure by my mother to "discipline" me.
My "discipline" was usually physically torture based. The use of it was under the authority of my mother, and therefore passed the authority onto him. And it was never as bad as the shit he used to do to me behind closed doors, away from the eyes of adults.
On multiple occasions in fits of rage or sadistic inclination he tried to murder me, from the time I was an infant all the way to adulthood. He almost succeded at least twice (2 times when I had to be revived from "dead") due directly to his actions. It was always excused and covered up by my mother to save face and stop anyone from outside the family from scrutinizing the situation too closely.
I'm obviously still coming to terms with this and think it's something I will have to deal with for the rest of my life.
Anything I wanted to do or found joy in, he would use against me. If he couldn't physically torture me he would psychologically torture me. e.g. I had a hamster, I loved it and foolishly showed this love in front of him. He killed the hamster "accidentally.", got away with it and would bring it up tauntingly in the future.
I learnt that the only way to be "safe" was to never reveal anything that brought me joy in front of another person. I very quickly learnt to internalize this, that if I lost MY desire to do things, then it was a much less energy intensive path than doing the thing only to have the end result twisted into something that resulted in torture for me.
It seems to have morphed into an almost comorbidity of executive dysfunction, PDA and disassociation triggered by my CPSTD. If I didn't "do" anything, then I wouldnt have anything of value and therefore it didn't give him leverage to take that thing away from me.
If I see someone as an authority figure and they ask me to "do" something for them, then my PDA kicks into overdrive. Its an illogical trauma response of "they are asking me to do this so they can torture me with it later." I had 1 boss that I saw more as a friend and associate that I could work with, every other manager or boss Ive ever had has kicked my PDA into overdrive to the point that Ive lost multiple jobs over it.
I guess I'm trying to say that if I didn't have to live my formative years under this authoritative monster, I wouldve learnt to respond to the world in a more reasoned manner. I feel like my PDA is a trauma response, my masking is for fear of my life.
I wish I knew who my "true" self was. Am I someone who was always autistic but had to hide through masking on fear of death? Did my autistic traits emerge because of the abuse that I suffered? Could I have been "autistic" and happy if my autistic traits weren't "disciplined" out of me through torture during my formative years?
Would I even have PDA if I didn't have a reason to fear authority?
Until I heard about PDA I never understood the "full stop" feeling I would get. Upon examination I realized that in my childhood it was against things that didn't make sense to me. Like why it bothered anyone else if my room was not clean and "organized". I knew where everything was so why did it need to look a certain way? This has made it nearly impossible for me to work anywhere corporate, who often have nonsense policies that defy logic. My frustration with no power to do anything to try and change things like that contribute heavily to difficulties holding jobs for more than a year or two. Sometimes this feeling led to anger and a feeling of having to defend myself or my thoughts. Other times it has led to near catatonic states, where I am paralyzed. I can not do anything. It may take me 30 minutes to turn on a light or maybe switch on the TV in an attempt to redirect or even restart my thoughts. It hurts me to know that people dismiss that people like me exist or act as though I simply choose to behave this way. It is how I have been treated for 41 years and for most of that time I just had to believe them and doubt my personal internal experiences. My defenses were scoffed at and deemed excuses for laziness. I can only hope more research is done so more people don't have to live a life like I have.
Another excellent analysis and summarization. If i had a dollar for every time someone called me stubborn because I resisted their advice or instruction, I would be a rich fella.
I experience it as feeling frozen and angry when watched or having to be accountable to someone… because I am anticipating being interrupted. I’ll start the task when all the dumbasses are out of the way! If I have to explain myself and try to prove to people who are many many steps behind me, that I’m actually ahead of them…it’s very emotionally taxing and I won’t have any energy left to do the thing. It’s not because we want to control others. We are tired and burnt out and fed up with being forced to operate on the same level as others.
it's like you are stuck on a sidewalk with multiple lanes of slow walkers who are all walking lock step with each other and that's the societal norm. Then people call you out when you get understandably frustrated at having to walk 1/3 pace. like every 3 steps they take you take 1 step and are just kind of waiting with 1 foot hovering in the air for them to take 3 more steps. It's exhausting.
I have been trying to get my son tested for years. Still on numerous years long wait lists. My therapist mentioned PDA to me in passing on appointment, and I did a deep dive on it as soon as I got home. It's my son. That's my son. I cried so hard.
Thank you for posting this video. I don't like the manipulative term either, it's hard to describe, the condition as a whole, you did well here, thank you so much for speaking on this topic.
Thanks for this!
I recently realized that I fit solidly into the PDA subset, and I would like to echo your assertion that just because some of the worst effects of PDA on others may well be beyond our (immediate) control, that should NOT give us permission to dismiss these behaviors as "just the way I am".
It is on us to find ways to avoid putting ourselves in situations where the "monster" comes out. And also to find ways to recognize the stressors that are bringing us close to the point of breaking, and get out of that situation, if possible, or at least warn a potential victim that we may soon be acting VERY poorly.
This was great. We need more informed discussions like this!
Love your work, Sydney! You’re awesome.
I’ve been diagnosed with pda for nearly two years. My psychologist just told me I had it and I never did any research on what’s actually was. I refused to listen to my psychologist and demanded to change the subject. Today I finally decided to stop ignoring it and actually find out what pda is co and it explains so much. I’m still not really okay with having it but I’m trying to accept it as a part of me rather than running away from it.
Thank you❤
Really enjoyed the video, especially from 16:02. Was a helpful way to view that that I hadn't really thought about before
I can't really handle to do lists, they just make things so much worse since I perceive them as adding an additional demand. Instead I know the things that I need to do and at some point when my brain will let me or the thing literally has to be done I'll manage to get through something
Not to mention that OCD therapy wouldn't work for an autistic individual due to the root cause of autism being related to mTOR making neural autophagy impossible. Since we cannot prune synapses like NTs... trying to eliminate behaviors like that just doesn't work. We have to work towards other behaviors and hopefully the new behaviors will mean the old behaviors diminish a bit.
EDIT: Oh, that job situation... I feel that so badly. Fortunately, I got into consulting and even though I have worked for the same employer for 10 years, my PDA is aligned because I have significant autonomy and I work with different customers all of the time. I am really fortunate in my work situation. Before this, I had no job that I lasted longer than 3 years... and many were far shorter.
The stubbornness works to my advantage, as well. When there is something that I sense as the "right way" to do things, I will not stop until I make it manifest.
Do you have more information on this pruning of synapses and neural autophagy and autism? I'm fascinated, and I also ideally would like to understand your sources. I want to understand the essence of autistic thinking. If you've got any links or anything that would be sick. Thanks.
This was definitely relatable, (which I'm so excited to say) Thank you. I always feel left of center and center of left, so this being "yes, yes, yes, yes, yes!" was great.
I always tell my sister that it feels on the inside like what it looks like when the devil tries to drag Constantine across the tiles in the movie Constantine, my body just grounds down.
Is it common for PDA to result in chronically being late? I am late to everything all the time. I have been this way all my life. I hate it. It’s not because I don’t care or out of a lack of respect. It doesn’t matter if I want to go or not. I don’t know what’s wrong with me. I just won’t be on time no matter how much I want to be. In fact, the more important it is to be on time, the harder it is to make my body leave the house in time to not be late. 😣
Maybe? Whenever I experience that it's more of a combination of time blindness and struggling with executive functioning. Like PDA is "someone told me to do this by this time by this time but I don't like being constrained so that's not happening and I'm not doing it" and executive dysfunction is like "I want to do this thing but that involves getting my brain into gear to do that and my brain is stuck in an inertia pattern I cannot break" if that makes sense? I have a video on executive dysfunction somewhere that should explain that WAY better but I usually attribute it to that, though the two can definitely come hand in hand :)
This video was really helpful. Thank u
i didn't watch the video yet, but you look really angry in the video thumbail! also, thank you so much for this video. you spoke about so many things that i thought i was alone with, or i didn't know it was "pda". :'-)
lol yeah she looks big angy
What about ODD? Lots of children with ADHD and Autsim may be Dx with ODD (some feel ODD cannot go with autism). PDA is well accepted in thr UK, Canada and Australia. The US is behind in that regard.
I can loosely relate to PDA but it's not something that is an issue most of the time. But I grew up in a very authoritarian household where I was forced to do things a certain way because my parents demanded it without my consent. As soon as I experience that sensation of someone trying to make me do something I didn't agree to I completely relate to the experience of stubbornly standing your ground and just say no. A lot of the time I just want to ability to choose. If I'm asked and I agree it's rarely a problem unless something else unexpected changes my perception of the thing. The thing about PDA though is that I was given very free reigns to just be myself until my father remarried, so it just wasn't a problem until that point in time. I had no choice but to submit though, because I was always very scared of violence if I didn't do what was expected. I'm ok with expectations of me if I also agree to them e.g. a job is not an issue because I chose that job and those responsibilities. I would probably feel differently if I was given other tasks that weren't included in my profile.
I sort of viewed my experience as a trauma response but honestly I've always been a stubborn child who wanted to do what I wanted to do. So it's probably a combination of nature and nurture of having som traits being predisposed but they only show up under certain circumstances. I don't recall being a problematic child at home but it did push me into becoming an edgy kid before that word was in fashion. It was a sort of logic where if I can't be who I am I'll totally not be what everyone else expects me to be. It was also a way to channel all the anger and pain I felt as a child, especially because I was constantly forced to give in to certain demands at home.
My spouse suspects they have PDA; it will be good to learn more about it to help accommodate them :)
thanks for the awesome video sydney! question(s): PDA as a complex with the avoidant attachment style? in other words, it seems PDA is at odds with forming and keeping secure attachments with a partner? like it feels like, in a relationship with someone who behaves predominantly in an avoidant style, who is also PDA, excuses the insecure attachment style (or the extreme drive for maintaining autonomy) "because its PDA"?
0:39 You forgot to mention a speed rapper lmao holy SHIT XD
I am in this picture and don't like it.
"If it makes no sense and I have no choice, it's not happening"❤❤❤❤❤
And...Breathe..... Wow! Too quick for me on normal speed lol x
❤👍💙🧡
Really? I love it, I have to speed so many UA-camrs up as they speak in such a slow manner!
And how!
Hi Sydney. How did you develop a nuance thinking style? I wanna become more nuanced
Short answer is ?probably trauma? But I think a great way to gain more nuanced and expansive thinking is to constantly ask questions - why is this the way that it is? who does this benefit? who does this hurt? where is this information coming from? how do other people feel about this? etc etc. Basically just work to think critically about everything and look for multiple perspectives. Hopefully that's helpful!
@@disabled.autistic.lesbian so rack your brains out? If that's the case then nts are black and white as well cuz most of them respond to stuff quickly probably cuz they're brain is taking information from past social situations and applying them to current stuff. I guess their brains automatically see gray area I guess we all need to work on nuance. Whatever it may be I'll try for myself. I'll ask a therapist.
I really wanted to watch this, but I had to stop it because the speech was so fast and I couldn’t keep up
Can always put it at .75 speed
I had to slow down the playback speed of this video in order to comprehend and retain your words better... Slow down a little bit more when you talk.
Dude, stop trying to change peeps so that you can be comfortable with No effort… if one could even call changing the video speed “effort”
Its funny, because at this speed Sydney doesn't leave me with time to get distracted and think my own thoughts between them. We all run at our own speeds and it might be just as difficult for us to go slow as it is for you to understand this video.
@Kase The New Latin word autismus (English translation autism) was coined by Dr. Guttmann Eugen Blueuler in July 1910.
He first used it in print to describe a symptom of schizophrenia in the scientific paper Zur Theorie des schizophrenen Negativismus (On the theory of schizophrenic negativism).
He derived autismus from the Greek word: αὐτός, romanized: autós, lit. 'self', and used it to mean morbid self-admiration, referring to "autistic withdrawal of the patient to his fantasies, against which any influence from outside becomes an intolerable disturbance."
Dr. Guttmann Eugen Blueuler wrote this in his book about his autism research in 1911...
"Autism has always attracted attention, particularly among the French. There are examples: one side of it is emphasized under the names of autophilia, egocentrism, hypertrophy of the ego, augmentation du sens de la personalite [increased sense of self], while the negative side is called "perte du sens de la realite" [loss of sense of reality] or described as "perte de la fonction du reel" [loss of the function of reality]. Pelletier says that the patient no longer distinguishes between reality and fantasies; "supposer la croyance ä leur realite chez ces malades serait doter leurs etats de conscience d'une energie qu'ils n'ont pas." [to assume belief in their reality, these patients would endow their states of consciousness with an energy that they do not have.]"
I also personally perceive about a 20 second time delay, so she appears slightly faster than she should be talking in my opinion. The reason why I perceive a time delay is relative to the fact that I'm always high on medical cannabis since I'm a PDA-autistic person myself. Everyone's brains reveal their choices before they’re even aware of them because of this universal time delay...
neurosciencenews.com/bains-reveal-our-choices-free-will-10857/amp
ua-cam.com/video/E93q68CDNKQ/v-deo.html
I’m fine with the speed, this is why we have speed control on UA-cam.
This is the only video I've ever had to slow down to watch. Lots of good points I need to parse out my son's behavior.
I thought you said the n-word response when you said inward response. I was like, ummmm, the what now?
I wonder if therapists can teach nuance stuff
You're talking is so rushed so as not to forget anything. I can't follow 😢
Go to settings and slow down the speed of the video 🙂
You can slow it down, I for one am so excited to find someone that talks at a decent pace instead of me still getting bored at 2x the speed.
It's funny, with my ADHD she's the 1st person who talks at a pace that doesn't bore me to tears.