Demand Distress 101

There are some kids (and adults) who have brains that respond to things in regular life as though there’s a real threat. This doesn’t mean imagining a threat in their minds. I mean on a neurological level their brains are automatically turning on their threat response even when they’re perfectly safe. Like a smoke alarm going off when all you did was light a candle. 

 

There are lots of possible causes but two of the most common causes I’ve seen for this are PDA autism and trauma, both of which make sense when you think about it. 

 

With PDA autism, the brain is developmentally more sensitive to distress...and then life throws a lot of threatening things at it. Being autistic in a world not designed for autistic people is hard. Sensory needs can make the world seem scary and overwhelming. Social communication struggles can make it hard to predict how other people will react. And getting in trouble all the time for basic neurodivergent traits just makes the world even more fightening. All this means that a nervous system that was already going to struggle with distress gets hit by one distressing curveball after another. 

 

That's why even though PDA technically stands for "Pathological Demand Avoidance", I always say it should actually stand for "Pervasive Distress Activation". The demand avoidance is the symptom people see, but it's not what's actually happening. A PDA person doesn't just decide they don't like demands so they're going to avoid them. They have a brain that is telling them that the demand, whatever it is, is dangerous. Here's the extra evidence that "Pathological Demand Avoidance" isn't what's going on. PDA continues to exist even in those instances that the demand isn't avoided! The brain is still screaming "This is dangerous!" the whole time.

 

And then there are kids with trauma. Even kids who were born typically developing can end up in this same situation with distress. Remember that the big problem is having your brain tell you you’re in danger when you’re actually safe. Well, what if you really were constantly in danger? Or what if things that seemed perfectly safe often turned out to be dangerous? Your brain physically changes in response to changes in the environment around it, and what that environment teaches is that the threat response needs to be ready to go at the slightest hint of danger. 

 

In any case with demand distress, those little moments that might set off a tiny bit of dysregulation for someone else - having someone tell them "no" or needing to do something they don't want to do - set off that threat message from the brain.

 

Here’s how a threat response turns into something that looks like “bad behavior”. The threat response has several different possible expressions. Fight, flight, freeze, fawn, and flop. When there’s a real threat, these responses help us. If someone was kidnapping our kid, we would want our kid to use them - to kick and scream, threaten them, pee on them, lie to them, go limp in their arms, literally anything to get away. And that’s exactly what the brain’s response would tell them to do. 

 

Unfortunately, their threat systems are activating that same pathway for things that are only a bit unpleasant, like being told to clean up. Even internal experiences - painful thoughts, demands of their own bodies (like the need to sleep or go to the bathroom), etc - can sometimes set off a threat signal. The pathways don’t always get full force activated, sometimes they can be just a little activated. The more often the activation occurs the stronger and more rapid the response is likely to get. 

 

Traditional behavior tools, like punishments, not earning reinforcers, shaming, or lectures actually are distressing. They take a situation that had distress at its root (because that’s where the behavior came from) and then add additional distress to it. That means the pathways connecting the original problem with the stress response are going to be getting further strengthened. And that’s not the kind of situation our traditional childcare tools - or even professional “behavior therapist” tools - were constructed to deal with.

 

Some things - like controlling as much of the environment as possible, using a trusted person to coregulate, or distracting the brain with feel good activities - can help decrease the sense of threat. But it also means that demands out of their control (internal or external) or having access to trusted people or distractions (like screens) removed can lead to reactions that from the outside seem wildly disproportionate. From the inside, though, they’re actually in proportion to how unsafe the world feels when those buffers are removed. 

 

Often PDA kids or kids who have experienced extreme trauma will do things to help them regain a sense of control. This is known as “equalizing”. Kids who externalize their distress may do so by putting others down, physically lashing out (biting, hitting), things like that. Internalizers might emotionally or physically self harm. It might look baffling from the outside, but equalizing like this is just a kid finding a thing they can do that makes their big scary feelings go away.

 

What’s more, messages from the “thinking” part of the brain (prefrontal cortex) might not get through as well when you reach these levels of distress. You know sometimes you’ll have a fear that is irrational and you'll use logic and coping skills to try to calm down? Well, if your “thinking brain” is struggling to get messages through when you’re distressed those skills go out the window, even if you can display them when you’re calm.

 

Think of having this hypersensitive threat detection system and poor connection to the thinking brain as kind of like trying to drive with bad brakes and a hair trigger accelerator - and you can’t control when the accelerator gets pressed. People see you driving terribly and assume you’re doing it on purpose, because your car looks like everyone else’s. Inside, though, you’re having to work a million times harder. Despite your best efforts, as well as countless driver’s ed classes, reward charts, punishments, lectures, and accidents, you just can’t make your car drive like everyone else’s. 

 

That’s what it’s like. You can’t see the brain differences from the outside, but it makes it so you don’t have the skills to succeed under typical conditions.