Quick answer, Yes.

What if what looks like refusal isn’t refusal at all?

What if what looks like stubbornness, control or simply not wanting to do something is actually a nervous system responding to a perceived threat?

I want to start this blog a little differently, because first of all, I want to tell you about PDA.

PDA is commonly described as Pathological Demand Avoidance, although you may also hear Persistent Drive for Autonomy, a term some people prefer. PDA is not currently a separate diagnosis in its own right, but is often described as a profile of characteristics associated with autism.

There is a problem with the name though, “Demand avoidance” can sound as though avoiding demands is a deliberate choice, as though the person has simply decided they aren’t going to do something.

This has not been my experience.

I have had the privilege of supporting many individuals with a PDA profile. It is incredibly rewarding, all-encompassing at times, and certainly challenging. It has also taught me a huge amount about autonomy, anxiety, safety and what can happen when our nervous systems perceive something as being too much.

For many people with a PDA profile, demand avoidance appears to be closely linked with anxiety and an extremely strong need for autonomy. This shouldn’t be confused with an anxiety disorder, although an anxiety disorder can also be present.

From the outside, this high level of anxiety can sometimes look like someone is being controlling, stubborn or difficult. It can even lead people to assume that they have simply lacked discipline or boundaries in their upbringing.

This isn’t a helpful way of understanding what is happening.

Someone with a PDA profile may experience difficulty with obvious demands, but also with concealed, perceived or even unspoken demands.

Think about something as simple as getting up in the morning and brushing your teeth.

Nobody may have actually said, “You need to brush your teeth.”

But the expectation is there.

And sometimes, that can be enough.

A task that appears incredibly simple to someone else can feel completely impossible to the person experiencing it.

And this isn’t necessarily limited to things they don’t want to do.

The combination of demand and autonomy can impact things that someone is desperate to do.

I have supported individuals who have been incredibly excited about attending a concert, only to find themselves physically unable to leave the house when the time came.

They wanted to go.

They had been looking forward to it.

There was no lack of motivation.

And yet their nervous system was saying, “No.”

Needless to say, that can be devastating.

So how do we support someone with a PDA profile?

For me, one of the most important things is to not enter the interaction with an agenda.

That might sound strange when you’re trying to support someone.

Surely we need an objective?

Sometimes, yes.

But if the person can sense that you have already decided what needs to happen before you’ve even understood what is going on for them, you may have unintentionally created another demand.

And that can make connection much harder.

Instead I start with observations, saying things I can see.

I am lucky/unlucky whichever way you choose to look at it, that crazy stuff happens to me often, like when the seagull stole my nectarine. So this gives me somewhere to start.

Choice matters

Whenever possible, create genuine choices.

A choice about whether to interact.

A choice about what to do.

A choice about how something happens.

And importantly, make the choices real.

Giving someone two options when the actual expectation is that they must choose one of them isn’t necessarily autonomy.

Sometimes the most useful thing is simply to create space and allow the person to have some control over what happens next.

This is also one of the reasons that reward charts, incentives and similar approaches often do not work well for someone with a PDA profile.

If the underlying difficulty is the experience of demand and a need for autonomy, adding another expectation, “If you do this, then you get that”, can simply create another demand.

That doesn’t mean rewards are always useless.

It means we need to understand why we are using them and what the person is actually experiencing.

What about anxiety and hyper vigilance?

When demand avoidance is closely linked with anxiety and a strong need for autonomy, the nervous system’s need for safety becomes particularly important.

Some people with PDA profiles can be highly alert to what is happening around them.

They may notice changes in tone, body language, atmosphere or other people’s emotions incredibly quickly.

This can be an amazing skill.

But it can also be exhausting.

Being constantly alert to what might happen next takes energy. It can also mean that things which other people don’t notice at all are picked up immediately.

And when we are already feeling unsafe or anxious, the things we notice can sometimes reinforce the concerns we already have.

This can create a difficult cycle:

I feel unsafe → I look for signs that something is wrong → I notice something → it confirms that I was right to feel unsafe → I need even more control and autonomy.

Understanding that cycle can be much more useful than simply telling someone to “stop avoiding things”.

So what can we actually do?

Start with the person.

Don’t walk into the interaction with an agenda.

Offer genuine choice.

Allow autonomy wherever you reasonably can.

Be curious about the person rather than trying to control the behaviour.

Get to know what helps them feel safe.

And be human.

If you’re having a rubbish day, and it is appropriate to do so, tell them.

Use age-appropriate language, of course, but you don’t necessarily have to pretend everything is fine.

Because there’s a good chance they’ve already noticed.

And perhaps most importantly, remember that behaviour is communication.

The person who appears to be refusing, controlling or avoiding may actually be communicating that something feels too much.

That doesn’t mean every behaviour has to be accepted without boundaries.

It means we can hold the boundary without losing sight of the person behind the behaviour.

Because the goal isn’t to make someone less difficult.

The goal is to understand what is happening for them well enough that we can work with them, rather than constantly working against them.

And sometimes, that starts with understanding that what looks like avoidance may actually be a desperate attempt to feel safe and retain a sense of autonomy.