A Persistent Drive for Autonomy
don't tell me what to do
A few months ago, I was having a very frustrating morning.
I wanted to work out. I actually truly did want to, but I could NOT make myself do it, no matter how much I bribed myself. I scoffed at my subpar executive function, and figured the ADHD was ADHDing. I did something I try not to do anymore, which is Mean Mommy myself.
I imagined myself standing in front of myself, hands on hips, yelling….
“GET OFF YOUR ASS AND DO THE DAMN WORKOUT!”
Sometimes if I Mean Mommy myself, the shame motivates me enough to do it. But sometimes, it makes me dig my heels directly into the ground. And on this particular day, it made me want to work out even less.
And so, I didn’t work out, and spent the rest of my day fucking annoyed with myself.
I told my shrink about it during our monthly Zoom. She paused, and asked, “Have you ever read about PDA?”
“You mean like public displays of affection?”
“No,” she said, “Pathological Demand Avoidance.”
I had not.
She explained it to me, and then asked if I was like that when I was a kid, and if I relate to that now. I was like “Oh, yes, absolutely.”
She then — VERY gently — told me it was a thing you see most commonly in autistic children.
When I got off the call, I immediately started reading everything I could about it, because of course I did. And she knew I would do just that. She’d been leaving me a breadcrumb trail for a while, but this was what led me to finally do a deep dive on the thing I’d been avoiding — the possibility that I did not just have ADHD, but also autism.
Pathological Demand Avoidance (“PDA”) is a profile seen within the autism spectrum, and usually develops in childhood. It is defined as when a person has an adverse reaction to being told what to do, even when it’s an expected daily function and/or something the person wants to do.1 It is often mistaken for willful defiance, when really it is a coping method to deal with anxiety that comes with poor executive function.2
My shrink used this example — if a parent says to a child who has autism/PDA “Get your shoes on”, it’s not just a simple request. In fact, it can be a direct threat to the child’s nervous system. The exact reasons are unclear, but it’s known that autistic people in general have difficulty with transitions3. It’s not just about getting on the shoes, it indicates a series of tasks; going outside, going to school, etc. The anxiety is triggered by a sense of a loss of autonomy. The child now feels that they do not have a choice in the matter, they must put their shoes on and do whatever comes after that. It no longer feels like their decision, that creates anxiety, and then the child does not want to comply.
A child with PDA will come up with some pretty elaborate ways to avoid demands. Obviously, they figure out pretty quick that saying “no” to your parent when they ask you to do something isn’t the best strategy. They often resort to humor or changing the subject, and it is said that children with PDA are often more sociable than other children on the autism spectrum.4 They may also retreat into fantasy, role playing, or other creative tactics to avoid the task (BOY DID I EVER). This is often viewed by adult caregivers as being “manipulative”.
If I had a dime for every time my parents told me I was “manipulative”, I’d be posted up at my beach house.
When my shrink brought this up, I thought about all the times I was told to do something and simply could not do it. It wasn’t “would not”, it was stronger than that. It was something I could never explain. My parents or teachers would tell me to do something, and my brain would just go NOPE, no matter how simple. I would jump through hoops made of fire rather than put my toys away. It was viewed as lazy or defiant, and I understand why, since on the surface it looks like some snot-ass child who won’t clean their room. It must have been especially bewildering when they’d ask me to get my coat on because we were going to do a fun thing that I actually wanted to do, and would drag my feet about it.
PDA can persist into adulthood. In my case, over time, my resistance to demands lessened significantly….UNLESS I am overstimulated/overwhelmed/think its stupid. The latter is especially true. For example, if I am asked to do something at work in a particular way, and I think that way is incorrect/dumb, I will avoid it. Like the plague.
It also applies to housework. My husband and I tag-team laundry. He usually brings it downstairs and throws everything in the washer, and I switch everything out into the dryers while he is working or exercising. It’s a great system that works for both of us.
The problem is never going downstairs to put the laundry in the dryer. It was when he would tell me to “make a basket” (aka, shove clothes into the laundry bag). I am a rummager, and my clothes are always all over the place, and sometimes that feels overwhelming, and I try to avoid or delay.
Now that I’ve explained PDA to him, he doesn’t ask me to do it. Rather, he goes into the bedroom and starts doing his basket, which signals to me that it is time to make a basket. It’s very dumb, but it works.5
Sometimes it pops up when I am struggling with a transition. In the case of my not wanting to exercise, and my “Mean Mommy” strategy utterly failing, my shrink reminded me that putting on workout clothes in and of itself is a transition, and then there’s a second transition of actually doing the workout.
I work out at home, so I’m often going from braless in PJs whilst fucking around on the internet to a workout. This should be an easy thing, as all I have to do is walk into my bedroom and change, but it can cause a lot of internal conflict.
She suggested that I stop communicating it to myself as a demand, and to say something like, “Hey, just go put on a sports bra and gym pants. If you don’t want to work out, you don’t have to, but maybe it would feel good to do it”. Then once the gear is on, I can go, “Okay, maybe let’s just sit on the bike”. And then when I’m on the bike, I can go, “okay, maybe 20 minutes”.
It worked.
There is controversy around this term. Some autistic folks think that the word “Pathological” has too many negative connotations, and some people have suggested redefining the term as a “Persistent Drive for Autonomy”, which I like better if I am being honest. PDA is also not an “official” diagnosis in the DSM, and there are some clinicians who argue that these “mini” diagnoses within the autism spectrum are unnecessary.6
The value of these terms is that they just give me more information. It helps me understand why sometimes I get staunchly opposed to something, even if I want to do it/like it, and especially if it is framed as a demand. It’s another piece of my executive function struggle that I couldn’t quite figure out.
I don’t view my demand avoidance as 100% negative, and I was relieved to read that other autistic folks feel similarly. I don’t automatically view authority as a good thing, and I will challenge it. That’s sometimes to my detriment, but I think a healthy distrust of authority can be good. I look upon outright demands or ultimatums with skepticism. I also feel that way about hard-line opinions, especially when they aren’t backed up with accurate facts. I think this has made me a better critical thinker.
I can be surprisingly fierce and forthright in the face of what I consider an unreasonable demand, and it catches people off guard since my default has been described as “bubbly” or “perky” (ick). This has made me a person who is described as “difficult” from time to time.7 I can be a massive pain in the ass, and I am more than aware of it, but I am also conflict averse (especially in person). If I am willing to argue, especially face-to-face, I think that what I am being asked is unreasonable OR is motivated by something no one is saying. With few exceptions, I’m usually correct.
I hate being micromanaged more than anything else. I am a hard worker, and if I am asked to do a job, it will get done faster if I’m left to plug away at it on my own. Before my burnout, I was a bit of a workaholic. If you needed some shit done, I was your gal. I’m still that way, to be honest, but you need to leave me the fuck alone while I’m doing it.
I am also protective over my physical body to a ridiculous degree. This has come in handy when it’s come to advocating for myself with doctors, but less so when there is something happening outside of my control. If I’m being honest, whether I had wanted children or not, I think the perceived (and sometimes very real) loss of autonomy in pregnancy, childbirth and motherhood would have been straight up traumatic.
Here’s a tangenty example — after 9/11, I had to return to my university not even ten days after it happened, despite there being a smoldering graveyard of wreckage a few blocks away. My dad had advised me to wear a dust mask if I was going to spend time outside. He was a machinist, and told me that there were likely fragments of metal and glass and asbestos in the air, and I didn’t want to be breathing that in. So I bought a cheap dust mask from Home Depot. However, I was also a smoker, and I’d remove my mask to smoke a cig during break. A friend of mine was dunking on me for wearing a mask but taking it off to smoke, which, fair.
I lifted the cig and said, “This is my choice.”
Then I pointed at the air — which looked like someone had thrown a few handfuls of glitter8 in it - and said, “And that is not”.
I used to think all of this was just stubbornness, or at my lower moments, proof that I was an asshole. I mean, I can be an asshole sometimes, but I am not actually an asshole most of the time. I just question everything and my brain has to go BEEP BEEP BOOP for a minute, and sometimes that beep beep boop results in “yeah I ain’t doing that”.
I can’t change how I am wired, but when I’m sitting at my desk going Jesus H Christ what is your problem and why are you not doing the thing you literally want to do, at least I understand why.
Screaming “WHY AM I LIKE THIS?” into the void what felt like millions of times and being met with silence was one of the most painful things in my life. Hearing a reply from the dark — not all the time, but sometimes — makes me feel something stronger than the word relief could ever convey.
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KBQ
Poor executive function is also a major hallmark of ADHD, and that’s why it can be difficult to parse out if someone has ADHD/autism/whynotboth
Pour one out for my husband, who thought he only had to learn ONE new instruction manual for his wife, and now it turns out there’s a whole OTHER instruction manual.
Mostly by men.
This was such a good (and relatable!) read. Both of my boys (4 and 6) seem to have some degree of PDA, and I often try to remind myself that while it's incredibly difficult now -- it may actually serve them well as they get older. Also, I had never seen it framed before as anxiety around executive functioning itself, but that makes SO MUCH SENSE. Thank you <3
So chewy is this info. I have often encountered (mostly at work, sometimes with friends) situations where I think "Why are you putting more effort into avoiding the work than just doing it?" This sheds some possible light. And putting on the sports bra is a hard no a lot of times, occasionally I just settle for stretching in just the t-shirt. Negotiating with yourself is exhausting.....