#pervasive drive for autonomy

[prazardous]

i think i'm fucked because every time i see self help advice that might actually be helpful, instead of going "ooh cool i'll try that" my brain says "fascinating war tactic. it'll never work though, for you see i have the upper hand" and then we watch youtube for 8 hours

[autball]

Dueling PDAers.

This just so happens to be a sometimes acceptable way to nudge kids into doing things more independently, or to set boundaries when you’re afraid of your kids becoming too “controlling.”

But it’s not *really* why I do it. That’s just a bonus.

I *have* to do stuff like this sometimes so I can keep my own PDA in check while meeting the demands of parenting. When I know I’m truly needed by them, I’m okay. But when it’s stuff I know they can technically do for themselves, PDA rears up and is ready to be mad about it. 

So in situations like this, I can either flat out say, “No, do it yourself” (leaving my kid feeling abandoned and unsafe), I can get up and do it while visibly angry about it (leaving my kid feeling bad about themselves), or I can find a way to take *some* small amount of power back and put my extreme drive for autonomy at ease enough to keep calm and carry on.

The third option is best, obviously, so that's what I try to do as much as possible. Seems to work okay for all of us at the moment.

[Image description: A 4 panel cartoon by Autball.

1: An ND child (light blue/blue) and an ND adult (light green/green) sit with their feet up on a red couch. Child plays on an iPad, Adult works on a laptop. Child says, “I’m hungry.” Adult responds, “Okay. I just went shopping so we lots of snacks to choose from.”

2: Top half: Close up of Child with one raised eyebrow. To their left, PDA has popped up in a thought cloud wearing a gun belt and cowboy boots, looking angry and ready to duel. Child says, “I want you to get it for me.”

Bottom half: Close up of Adult with one raised eyebrow and a partial smile. To their right, PDA has popped up in a thought cloud wearing a gun belt and cowboy boots, looking angry and ready to duel. Adult says, “Do ya now?”

3: Original scene, except now there is a thought cloud between them that shows their two PDAs looking at each other, ready to duel as a tumbleweed blows by at high noon. Adult says, “Tell you what. I can get it the next time I get up, and if you don’t wanna wait that long, you can always get it sooner yourself.”

4: Same scene, except now their two PDAs are shaking hands as if coming to a truce. Child says, “I can wait.” Adult replies, “Okay.”]

[sideblogformentalhealtshit]

Am I the only one who despises "pervasive drive for autonomy" as an alternative to "pathological demand avoidance"?

PDA takes away so much of my ability to decide for myself what to do; it robs me of my autonomy. I struggle with doing things I enjoy because I make them into demands in my head, I can't watch weekly-airing shows because I tell myself that I have to, that I love this show, that I need to watch the next episode, and then no longer being able to. Because my brain has decided that it just Must go into fight or flight because... I am trying to decide what to do.

It just feels... gross, I guess, to dress it up as "i just have a strong sense of autonomy, i just don't like being told what to do ^_^" when it is genuinely disabling to me, not just in when other people try to influence me, but also when I want to do something and PDA prevents me.

[raincamp]

11 03 2023

discovering that i experience pathological demand avoidance / pervasive drive for autonomy (PDA) as a symptom of my autism has been fucking life changing.

i spent all these fucking years feeling so helpless, my parents telling me that im lazy, feeling like a failure because i couldnt even graduate highschool. i didnt understand how everyone else could just sit back and waste their entire lives at the demand of someone else. how they could work 40+ hours a week and not come home so exhausted that they can't even find time to take care of themselves.

i couldn't find a justifiable reason why i was physically unable to do what everyone else has been able to "just suck it up" and suffer through. working full time, being at school full time, it was all enough to make me lose sight of why i was even alive. enough to make me have mental crises. enough that i ended up in the hospital several times.

but idk, im fine when i have control over my schedule. i was thriving during COVID when school was no longer a thing i was forced to do, but something i got to choose to do. nobody was making me sit in a building for 6 hours bored out of my mind. i got autonomy over my schedule, over my life, and i genuinely haven't been able to recreate the feeling of freedom it gave me since.

and when i was forced to go to school again, despite how easy it was, despite the fact that i barely had to do anything, the mere idea of having to sit in a classroom against my will made me burn with such rage that i made it so that i had autonomy over it. i would only come to classes i wanted to go to, which meant going to school three hours late and walking out when the class was over.

now obviously thats not how highschool works so i had to drop out. after a lovely (/s) visit to the psych ward my parents stopped giving a fuck. but then it was my choice to get a diploma/GED which i had zero problem doing, i was happy to do it even. why didnt i just sit through the last 6 months of school instead? idk, to me it felt like fucking torture.

i still feel that way, working full time. working part time even. i hate it because i want nothing more than to enjoy having a career like everyone else can. to be able to have a life outside of work, a fulfilling one even. ive never been able to do that. and it saddens me. why is it that everyone around me can find happiness in working their entire lives away but not me? why do i come home everyday wanting to die? why am i the only one who sees it as an injustice that my entire life is going to be spent at the whims of someone else's demands?

i burn with helplessness and anger and pain at the mere thought. but still i suffer through as many months as i can handle at jobs until i have enough money to last me a couple months of freedom. even though i have to sacrifice my mental stability for it. even though it means hospital visits and alcohol dependency and suicide attempts.

a perfect life for me doesn't include not working though, not working feels unfulfilling, i want to make a living for myself. i want to be financially independent. i dont even mind working 8 hours a day if i got to choose my schedule. if i could wake up one day and say "nah ill wait till 2 pm to start work today" or could start work at 7 am when i wanted, take as many days off as i wanted, which honestly wouldn't be a whole lot because i find value in productivity.

its the fact that i have to follow the demands of someone else that sucks the life out of me.

and now that i have this knowledge i can learn how to use it to accommodate my struggles instead of feeling like a fuck up

- andrew

[aceshigh10987666]

Is autism a disability? Hell yes, it's a disability. It has been the main reason for my disability throughout my life.

But also...

I wouldn't have a raging case of CPTSD if I wasn't autistic. Trauma, yes. An unending and overwhelming experience of unresolved rejection, fearfulness, failure, horror, isolation, regret, loss, shame, and grief? No.

[anxietyfrappuccino]

my therapist wants me to think of ways to build my autonomy... how the fuck do i that when the world is set up against neurodivergents and when my mental cocktail is strictly "no, must hide from BAD"

[vizthedatum]

This autistic person I follow on instagram calls PDA (pathological demand avoidance) a pervasive demand/drive for autonomy.

It’s a genius reframing for me - it honestly makes so much difference.

You can follow him here: https://www.instagram.com/asianjohnnycash?igsh=NGFma2ZkYXNpZzY2

[lilac-set]

If anyone has any sort of tips on how to make pathological demand avoidance easier at all please let me know

[missmitchieg]

PDA autism explained (skit)

[a-queer-little-wombat]

The Puritans fucked up the USA so deeply hardcore for this, and Catholics are right there with them. FUCK THEM BATCHES, STOP SUFFERING. DO THINGS HOWEVER MAKES THEM TOLERABLE, IF NOT FUN.

Start playing Pokémon Go to have a reason to go walking. Get an under-desk bike.

Use that sunscreen that sprays on or us in a stick or whatever works for your sensory issues.

Make stir-fry vegetables. Look into baked salads. Make pie. Batch cook. Find someone on social media posting cooking/recipes that you like and subscribe/follow them so you've got a background feed of ideas for vegetables. Frozen vegetables are Just Fine, use em. Cut up your carrots/celery/etc into snack sizes and bag/box em in your fridge for easy grabbing.

Buy a cool pill case for your meds (mine isn't even fancy but it has helped SO MUCH, even if refilling it is still annoying).

Set the meds alarm on your phone to say "thanks for taking care of you" when you (finally) hit "done". It's fucking ridiculous but it tricks your brain into the dopamine instead of just "stop bothering me, alarm".

....

And yet, uh, some of this is also like "have you tried being neurotypical?" because some things you just can't make fun or even tolerable. Like fucking phone calls. I'll do nearly anything to NOT make a phone call.

PDA sucks a whole lot, y'all.

Sometimes I want to do the thing, I need to do the thing, but NOPE. No amount of planners, to-do lists, alarms, reminders, whatever will make me able to do the thing.

Hey btw, here's a piece of life advice:

If you know what you'd have to do to solve a problem, but you just don't want to do it, your main problem isn't the problem itself. Your problem is figuring out how to get yourself to do the solution.

If your problem is not eating enough vegetables, the problem you should be solving is "how do I make vegetables stop being yucky". If your problem is not getting enough exercise, the problem you should be solving is "how do I make exercise stop sucking ass". You're not supposed to just be doing things that are awful and suck all the time forever, you're supposed to figure out how to make it stop being so awful all the time.

I used to hate wearing sunscreen because it's sticky and slimy and disgusting and it feels bad and it smells bad, so I neglected to wear it even if I needed to. Then I found one that isn't like that, and doesn't smell and feel gross. Problem solved.

There is no correct way to live that's just supposed to suck and feel bad all the time. You're allowed to figure out how to make it not suck so bad.

[autball]

Actual footage.

(Image description: A 4 panel cartoon by Autball.

1: Logic (a blue cube) says, “Hey guys. You know how the feet have been getting cold at night and making it hard to sleep?” Executive Function (a silver gear) and Inertia (a purple sphere) reply, “Yeah,” while PDA (a red spiky figure) stares back silently. Logic continues, “Well, what if we think ahead and put on some socks *before* we get into bed tonight?”

2: Executive function smiles and says, “Yeah, that makes sense. I can just add it to my bedtime to-do list.” Inertia smiles and adds, “and I’m already up putting on pajamas, so it’s easy enough to just grab some socks too.” PDA has one raised eyebrow and says, “Yeah, I don’t know. I mean, I don’t like the way the feet are trying to hold us hostage with this ‘keep me warm or I won’t let you sleep’ bullshit. I say we stand our ground and tell ‘em to make do with the blanket.”

3: Logic says, “Okay, that’s reeaally not what’s going on here though…” Inertia adds, “Come on, you know how much I hate getting up when I’m already-“ PDA interjects, “Nope. Blanket’s enough.” Executive Function frowns.

4: A white box at the top reads, “30 MINUTES LATER…” PDA, Logic, Inertia, and Executive Function are all lying awake in their beds. PDA angrily says, “Fine, go get your precious socks. I can’t sleep with these cold feet.” Inertia gives side-eye and says, “You’re a real asshole, you know that?” Executive Function flips PDA the bird.)

[anxietyfrappuccino]

what if i induce panic by not taking my medication, will i get things done then

[a-queer-little-wombat]

I remain very unsure if it was for the better or to my detriment that I was homeschooled during the years they do the 'gifted' testing, so I didn't get put into those groups when I went back to public for 5th grade.

On the one hand, I did ... not test well when I was going back, and my spelling was appallingly bad. Being in with 'mainstream' kids gave me a chance to catch up on all that without as much pressure. (Took me a couple months.)

On the other hand, when I caught up with the gifted nerds in middle/high school, it was nice to be around people I could at least *nerd* with. I was deeply *weird* as a kid/tween/teen, not just because of (undiagnosed) neurodivergence, but because my primary socialization in most of my elementary years was with *adults* and because I read a lot of YA and adult sci-fi and fantasy (and this was the 80s so, uh, mature themes abounded). My interactions with the mainstream kids were awkward AF because we were fundamentally different.

Anyway, nearly fifty and still undiagnosed, still unmedicated, and pretty much a washed-up useless housewife and parent to the deeply weird, neurodivergent child I'm homeschooling, so ... yeah.

people misunderstand what ‘gifted kid’ actually means but it’s ok it’s fine it’s cool it’s good

[vizthedatum]

Woke up pretty early but it’s another solid morning: vitamins, breakfast, tried something different with my coffee today, water, skincare, feeling motivated

—

It hasn’t always been easy for me to get started… unless I had something super urgent to do or somewhere to be, I can’t get started. At any time of the day! It might sound mundane but it can be utterly frustrating and disabling. Especially when you’re also dealing with depression, PTSD, pain, and fatigue. (Ugh it’s been so hard since everything is so interrelated)

Right now I’m not on any oral prescription meds (well except for my current antibiotic regimen) - I’m trying to say I’m not on stimulants right now! (I might go on them later idk)

I always feel like my autism and ADHD are at odds with each other, you know?

The way I’m trying (after trial and error… and reading a lot of anecdotal experiences) to mitigate that is by having a large windows of time in the morning to do “morning things.”

These “morning things” can happen at any time during the morning timeframe, and they consist of multiple options I can pick and choose from (so yeah, tackling my pathological demand avoidance too!!): eating, drinking, exercise, meditation, journaling, cleaning, skincare, figuring out meals, planning my day, just sitting and enjoying being awake, etc.

Not having a rigid schedule but still having structure to my schedule feels right.

[a-queer-little-wombat]

This thread is eight years old, and in that time a concept has filtered across the pond that might be worth looking into for folks that this post feels relevant for: Pathological Demand Avoidance, aka (from some folks with it) Pervasive Drive for Autonomy.

The traits which make up PDA in the UK diagnostic end up in the US diagnostic as ODD - Oppositional Defiant Disorder. Which is to say, once again the US defines a neurotype by how other people perceive it rather than how it feels internally. [eyeroll]

Executive dysfunction life hack

Instead of telling yourself, “I should get up,” or “I should do this,”

Ask yourself, “When will I get up?” or “When will I be ready to do this?”

Instead of trying to order yourself to feel the signal to do something, which your brain is manifestly bad at, listen to yourself with compassionate curiosity and be ready to receive the signal to move when it comes.

[autball]

And Did You Know…that that is part of the reason why “appears comfortable in role play and pretend” became a “key criteria” for PDA? (PDA = Pathological Demand Avoidance, or Pervasive Drive for Autonomy.)

For a long time it was considered an essential part of PDA, but it was changed to “optional” not too long ago. And for good reason. We know now that plenty of autistic people do engage in imaginative play and role play, AND that not all PDAers do.

While role play is very often just for fun, no matter who you are, it can also sometimes be used as a coping mechanism. It can be used to get out of things, or to make it easier to get through something challenging, or even as a way to mask.

It’s not always a cause for concern, but if you find your person (or yourself) spending more time as someone/something else than as themselves (or yourself), it might be a sign that some changes are needed. For example, you may need to lower stress/demands, or you may to ensure there are more places where they feel safe being themselves.

But again, it’s not always a bad thing! If your child does use role play as a way to cope or avoid things, it’s okay to just go with it in the moment. If it helps them get through doing a hard thing, just play along! If they use it to try and “get out of something,” hear that they’re telling you they can’t handle it for some reason. Maybe there’s something in their way that you could help with, or maybe they just need you to back off right now.

This is talked about a lot more in the PDA community than in the wider autistic community, so hopefully this brings awareness to people who haven’t yet come across it. But I do wanna reiterate that it is not all PDAers and not only PDAers who use role play in this way (or at all). So don’t let anyone try to tell you that you or your kid is or isn’t something over this particular trait alone.

(Image description in Alt Text.)