"DON'T TELL ME WHAT TO DO!"
Pathological Demand Avoidance, Oppositional Defiance Disorder, or something else entirely
This is a thought that goes through my head a lot when I’m stressed. I’m sure you’ve been there too.
While I didn’t mean to make this essay so personal, I don’t find myself able to speak on it from any other point of view. I can only do my research and tap in to what I know about myself.
We’ve all been there a time or two: emotions are high, situation is overwhelming or stressful, and we just get to urge to tell someone off in the form of, “don’t tell me what to do,” despite the needs of the situation or the person trying to intervene, interrupt, or help. It rarely ever comes from a place that isn’t emotional or stressed or aggravated. And for the neurodivergent person, this can be a more common feeling than one might expect. Clinically, there are a couple reasons for this, and I will try my best to explain it from my own experience.
PDA
When I find myself in a high-stakes situation, or perhaps a group project with a lot of work placed on my plate, this frustrating dichotomy comes in when someone will try to make me stop or change course. And while I do often want to be instructed in the best way to do something, in these cases, unbidden, I hate being told what to do. It comes out of nowhere and surprises even me. When I’m overly stressed, I even say so out loud.
This might be classified as PDA, or “pathological demand avoidance,” and it’s proposed to be a symptom in some types of autism spectrum disorder. And while it is not yet considered a formal diagnosis in the United States, it can be a very real experience for many on the spectrum.
In my experience, the best way I can describe it is a force that is telling me to keep going, to figure it out, that I’m on the right track, and this person or people telling me what to do are trying to derail me or take away my efforts. And when I am functioning at capacity, that is the last thing I want to be told. I don’t want to be told that I’m messing something up, or that I’m doing it the hard way, but still, I don’t want to make a mess or make things harder than they have to be.
I don’t know if I actually have PDA, or if this intense urge to tell people off when I’m stressed is something similar, ODD - oppositional defiance disorder.
ODD
In danger of making everything sound clinical when it’s a very normal and real experience most people have, I have to talk about another behavior seen in neurodivergent people in stressful situations. It is only commonly accepted at this time that ODD is more typically linked to individuals with ADHD, and not autism. While ODD is very similar to PDA and can look the same from the outside, ODD is more willful and forceful. Someone with ODD might act out, saying “don’t tell me what to do,” just to be defiant, to tell off an authority figure, and comes out of a more disrespectful attitude than one of overwhelm. This can be contributed to a general struggle with controlling emotions, which is normal in ADHD, and can be recognized in childhood. It can be brought on by heavy circumstances and does not have to co-occur with ADHD. There is also a strong genetic tie to this particular symptom, where that isn’t seen in the cases with PDA in autism spectrum disorder.
Long story short: PDA (pathological demand avoidance) is more commonly observed in individuals with autism, not so much ADHDers. ODD (oppositional defiance disorder) is observed more often in ADHDers than in those with autism.
According to Autism Parenting Magazine, and Mayo Clinic, PDA comes about as a result of overwhelm and stress, and the feeling that someone is trying and failing to work within their capabilities. While ODD is very similar and can look the same from the outside, ODD is more willful and forceful, and can be brought on through environmental, and even genetic, factors.
But there could be a clinical third option, and it’s the one that makes most sense in my case.
Executive Dysfunction
Most of the time, I wish to be told what to do in a stressful situation: I don’t want to make things worse, and I don’t want the responsibility heaped onto my shoulders if things go sideways. I don’t always like to rock the boat; I prefer to not invite confrontation and have things go smoothly. For me, this leans more toward feeling like I’m in over my head while overwhelmed or stressed.
But there’s the other thing that happens, when I am given a short set of instructions, like:
“Stop.”
“Let’s try this.”
“Put that down and come over here.”
And my immediate impulse is to scream, “DON’T TELL ME WHAT TO DO!” It comes from the strange, yet probably delusional feeling that I’m about to get it right, that I’m about to strike gold and I shouldn’t stop.
So what is it? What am I experiencing? Here’s my running hypothesis: when I think, “don’t tell me what to do,” what might I really mean is, “I don’t want to stop, please let me finish.”
I have trouble switching gears and moving on to something else, especially if I feel like I’m getting somewhere with what I’m working on. If I am making progress - and in these stressful cases, hard-won, yet imperfect progress - I feel like being stopped in my tracks is asking for too much, even if it is advisable for me to do so. I should be allowed to slowly put down the breaks, not be stopped abruptly and left with nothing to show for it.
This kind of trouble with “switching gears” is, in fact, common in ADHDers and could be called, “executive dysfunction.”
While this isn’t always a symptom for ADHDers, it is a part of the lack of activity or low-dopamine levels in the frontal lobe, the part of the brain responsible for impulse control and decision making. For me, I think this is where this compulsion comes from; making myself stop, dead stop, and switch to a new path isn’t always possible in my brain.
Don’t get me wrong, I can stop my body from moving - quite literally stop what I’m doing - and move in a different direction, but that often doesn’t mean my brain has done the same thing. My mind is still on my previous task, problem-solving and pondering how I could’ve fixed or improved that thing while not allowed to actually do anything about it.
When I feel the compulsion to say, “don’t tell me what to do,” it isn’t meant to be disrespectful (ODD might beg to differ), and it doesn’t come from a place of not wanting assistance or help (or feeling ungrateful for that help). It comes from a desire to make things right, and yes, that can be interpreted more for my personal cerebral needs and not for the outside needs of the group, which is valid reason to disengage from the action. But it is a very real expression of my particular neurodivergence, and I’m sure others also might relate to this feeling.
Next time someone tells you “don’t tell me what to do,” there can be any number of reasons why, and not all of them are malicious, selfish, or meant to harm. Maybe they just want to help, maybe they need support. It’s that their emotions are dis-regulated and they just need a moment to disengage and feel allowed and safe to do so. Don’t tell people what to do, encourage them to self-regulate and take the time they need to be the best and most supported version of themselves when things are stressful or overwhelming. We can all agree that cooler heads should prevail in the end, and we all need that kind of energy these days.
So, what do you think? What are your reasons to demand, “Don’t tell me what to do?”
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