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Pathological Demand Avoidance

Pathological Demand Avoidance is currently treated as a distinct profile within autism, or Autism Spectrum Condition.

The name started out as PDA Syndrome, given by Elizabeth Newson. She was looking at children who were suspected of being autistic, and whose difficulties and strengths, and whose behaviour, ran against “classic” autism in a few fundamental ways — ways that hung together consistently. At the time she saw it as a condition of its own, sitting alongside autism the way ADHD does, with similarities to it. Since then it has been more widely accepted as a profile inside the autistic spectrum. I am honestly a bit ambivalent about where PDA “sits”. I think there is more to be learned by looking at neurodivergence as a whole. What I am not ambivalent about is this: PDA is a distinct form of neurodivergence, and it shares traits with other neurodivergences.

Gaining a little understanding of PDA

Demand avoidance means avoiding things once they count as a demand. Simple enough. We all do it, surely? None of us wants to be told what to do, or to get on with the jobs we dislike. That is where the first difficulty creeps in: what actually counts as a demand? You might assume it is when somebody tells you or asks you to do something. In reality demands are much wider than that. They cover what is asked of us, what is expected or hoped of us, what we expect of ourselves, and the ordinary expectations of society — washing, for instance.

Now the pathological part. Someone who is pathologically demand avoidant cannot do a thing when, and because, they experience it as a demand. They avoid more than the unpleasant jobs. They avoid things they genuinely want to do, simply because they have been told to do them, because they are expected to, or because the expectation of how they should behave while doing it is set too high. They avoid ordinary everyday tasks: washing, getting dressed, the social conventions everyone expects, going to bed. They avoid things you would never think of as demands at all, because they are demanding them of themselves. A PDAer can be left completely paralysed by their own expectations of what they believe they ought to be doing or achieving.

The PDA Society puts it this way: “This extreme avoidance extends to the most basic demands of everyday living and is not limited to the avoidance of unpleasant, difficult, specific anxiety-provoking or unappealing tasks. Someone with a PDA profile will also have tremendous difficulty complying with their own self-imposed expectations and with doing things that they really want to do”.

That distinction is worth holding on to. Other neurodivergent people experience demand avoidance too, but for different reasons: executive function, or anxiety. PDA avoidance is not set off by fear of the activity, or by finding it hard. It is set off by the activity being a demand. You can read more about the difference between the kinds of avoidance here.

Pathological demand avoidance may be the clearest behaviour of this neurotype, but it is far from the only feature, and it matters that people understand what drives it and what else comes with it. It saddens me a little that the profile is named after one of the hardest things a PDA person lives with. Labels and language carry weight, and this one causes misunderstanding as often as it clears it up. We need far better awareness of this neurotype in professional settings, in the wider community, in the literature and in the education system, so that PDA gets recognised, diagnosed consistently, and supported properly.

The PDA neurotype in detail

As I see it, the feature that overrides everything else here is an intense and pervasive need for personal freedom and self-determination. Autonomy. A PDAer needs to live according to their own rules, their own code and compass, and would genuinely prefer the world rearranged to suit. That is what makes PDAers such good activists and revolutionaries, the sort of people who lead and inspire, and honestly rather excellent company — until they have to live under other people's rules and demands. I would prefer PDA to stand for Pervasive Drive for Autonomy, or Pervasively Driven Autonomist. Lily Style and I came up with that between us, and you can read more about the case for a change here.

Three main behaviours grow out of that need for freedom and self-determination.

1. Taking control

This is most often called an “anxiety-driven need for control”. PDAers need to be in control of most situations, and being out of control is stressful — unless they have a coping strategy in place, or are happy to hand control over. A great many professionals treat anxiety as the engine of PDA. I don't agree, and I know I am not alone in that among adult PDAers. My argument is that the intense need for autonomy is the fundamental neurology of the PDAer. When that need goes unmet, or freedom is challenged, the anxiety that follows produces the need for control, the controlling behaviour, and the two behaviours below.

2. Avoiding demands

The most visible feature of a PDAer is, not surprisingly, someone who pathologically avoids demands — demands from other people, demands from themselves, and the demands of ordinary daily life. The word pathological is doing real work there. It is the extreme, obsessive, atypical quality of the avoidance that marks out this neurotype and this neurodivergence. The cause, again, is personal freedom and self-determination being challenged or compromised. Autistic people without PDA also avoid demands in certain situations, specifically when they are asked to do something they are uncomfortable with, or something that sets off their autistic anxiety. In ADHD, demand avoidance turns up through executive function difficulty and fear of failure. Neither is the same as the PDAer, whose anxiety is triggered by the demand itself, even when the demand is for something they enjoy or had wanted to do.

Picture a PDAer with a fixed capacity for demands in a day. How large that capacity is depends on how many demands the previous days and weeks have taken out of them, how anxious they feel about everything else, and how much personal freedom they have been allowed lately. The demands of living eat into it. By the time they have washed and dressed, a PDAer with a small capacity may already be finished. They may also choose to skip those things in order to keep capacity for something they would rather do. A PDAer can learn to regulate this capacity, but only if they are allowed to do it freely, without being nudged.

We think of demands as being told what to do. In practice people, and life, make demands in all sorts of ways. Freedom to self-direct gets compromised subtly as well as obviously: someone trying to influence your choices, expectations placed on you that you had no part in setting. Expectations count as demands whether they are real or only perceived by the PDAer. They can be society's expectations, the PDAer's own expectations, or other people's. Reminders count. Suggestions count. Recommendations count. The behaviours used to dodge all this are as extreme and pervasive as the demands themselves, and they always include social strategies. If a PDAer cannot avoid a demand, or the anxiety of daily life gets too large, the anxiety becomes unbearable and ends in meltdown or shutdown, which can be very serious for the PDAer and for everyone around them. A PDAer already running anxious may skip the early stages entirely, or go straight to meltdown or shutdown at the first hint of a demand.

Stage 1: light avoidance — distraction, procrastination, negotiation, excusing themselves, masking.
Stage 2: strong avoidance — retreating into fantasy or role play, outrageous social behaviour, incapacitating themselves, making excuses that sound ridiculous, outright refusal.
Stage 3: meltdown or shutdown — self harm, physical and emotional; verbal or physical abuse of others; destruction of property; extreme exhaustion and an inability to function; uncontrollable crying.

Please remember that the stage 3 behaviour is a panic attack, and needs to be cared for as one.

3. Fantasy and role play

The third behaviour, which follows from the same need for freedom, is usually played down as “a possible feature of PDA that is potentially distinct from other autism profiles”. To my mind role play and fantasy are a key part of this neurotype. PDAers are very comfortable in role play, often obsessively so, and in their own private fantasies, sometimes called daydreaming. I think that is a direct consequence of the need for personal freedom: they learn very quickly to retreat into worlds and characters entirely of their own making. Inside those, they have complete control and complete freedom, and no outside person has any say at all. If a PDAer chooses to role play with other people, you will watch them take over the whole thing.

For autistic people without PDA, role play and fantasy can be a struggle, or they may enjoy much more formal role play as adults — stepping into another society with clearly defined rules they understand, which can be easier to navigate than ours, where the rules shift and are often too subtle.

I would describe this aspect as pathological too, because PDAers use role play in extreme and atypical ways in ordinary daily life. Here are the three commonest ways they use it to get by.

Resistance, restoration and retreat. A PDAer will retreat into their own fantasies and role play to resist the demands of daily life. They may also put on a role or persona out loud, as a stage 1 social strategy, to resist what other people want: “No, I am Elsa, and Elsa doesn't clear the table.”

They will also withdraw into a role or a fantasy world to ease anxiety and to make sense of social interactions they don't fully follow. That restores balance, and a sense of personal freedom.

Masking. A PDAer can use their ease in role play to build a role or character in their head that hides their difficulties from particular people, or in particular places. It is an immense skill, and it lets some PDAers conceal their struggles from the world. It can be so thorough that PDA is missed or misdiagnosed, and PDAers, especially the adults, end up with a badly disrupted sense of self. Many do not know who they are beyond a series of roles they perform. It is crucial to understand that staying in role, for any length of time, is exhausting. A PDAer who has been “in role” needs long stretches of rest with no demands to recover, and without that, meltdown or shutdown is only a matter of time. Undiagnosed adult PDAers are frequently diagnosed with a pile of mental health conditions instead — depression, anxiety, chronic fatigue, usually some mix of the three. Roles can also be used to cope with a demand; a good number of adult PDAers describe pretending in their head that they are on a cooking show in order to get dinner made.

Stimming. Building a world for yourself, making a character in your head, or fantasising about an interest is, for a PDAer, about the most comforting sensation available. Once you understand that stimming is usually a self-soothing behaviour, it is easy to see how role play works as a cognitive stim. It certainly comforts.

PDA as part of the autistic spectrum

PDA is described as part of the autism spectrum, rather than a neurodivergence of its own, because it shares the features common to most neurodivergences — ADHD, SLD, OCD and the rest — such as sensory differences, emotional regulation differences and executive function difficulty. It also shares the main defining traits of autism, each in its own particular way. Those features do show up differently in PDAers, and I will go through them below, followed by the general neurodivergent traits.

Social communication and interaction

One reason PDA was first thought to be a separate condition is that the PDAer was believed not to struggle with social communication and interaction. PDAers are often very social, they like being around people, and people tend to like them. They are frequently charming, funny and exciting to be near, at least some of the time.

In more recent years it has become clear that PDAers do struggle with social communication, just not in the way non-PDA autistic people do. Some professionals describe it as “surface level sociability with a lack of deeper understanding”. I can see how they arrived there, but I think the description misleads.

My reading is that PDAers usually have a very sharp understanding of human behaviour, and a solid grasp of what is going on for other people. I also think empathy tends to score very highly in the PDAer, much as it does in ADHD, both emotionally and cognitively. What the PDAer does not always have is the ability to put complex social skills into practice at the moment they are needed. So surface relationships and general social skills can come easily, particularly on their own terms, while long-term relationships, or complicated situations and dynamics, can be close to impossible. I don't think that is always a failure of understanding, or of reading other people.

“I can analyse the behaviours of others to a greater degree than most. I can observe social behaviour and understand the sub-text between two other parties, who have no idea of that. I can feel the feelings of others and the emotional energy in a room. But I often find myself in a situation in which I have clearly made a serious social error, and I could not explain to you what it was.” — an adult PDAer

“My friends think I am fun and they get excited about my ideas. Then they don't like me or want to play. I don't understand why.” — a child PDAer

PDAers seem unable to observe and respond to ordinary social boundaries, because their sense of themselves as someone who deserves freedom is so strong. That leads a PDAer to believe they are equal to everyone else, and should be treated as such at all times. Which is true, and should be true for everybody, but the rules of our society are not built that way. There are plenty of situations where one person — a teacher, a police officer, a manager — is treated as more important and given more power and influence. A PDAer finds any loss of control unbearable, and on top of that cannot see why they should not challenge a person freely, whatever their status. They also won't care much, because the rules look ridiculous to them. Child PDAers often expect to be included in adult spaces, and to form friendships, or more, with adults, as though age made no difference.

Where the footing really is more equal, the PDAer may still struggle, because the need for freedom overrides the cognitive ability to read cues. The cues are there. On reflection the PDAer may well be able to read them. In the moment, though, the pull to speak, to give an opinion, to put the idea out, to take control, is too strong. Afterwards there is likely to be shame at the mistake, along with confusion, because on looking back they may not be able to work out what happened at all.

This is one of the ways PDA sits closer to ADHD than to autism. People with ADHD struggle in social relationships because of impulsive, hyperactive and inattentive communication, which leaves other people thinking the ADHD person is rude, thoughtless or uninterested, and leaves the ADHD person baffled. I am not claiming PDA is a form of ADHD, or that it isn't a form of autism. I am saying the categories we have are neither perfect nor simple.

Restricted and repetitive behaviour

PDAers can show restricted areas of interest, as autistic people do, and may be even less willing than other autistic people to do or discuss anything outside that area, because being pushed outside it costs them personal freedom. It can be harder to spot in a PDAer, partly because of the kinds of interest they follow: they often look more socially ordinary, they may shift over time, and there is a pull towards novelty, especially where ADHD co-occurs, which statistically it very often does.

The interest of a PDAer is more likely to involve people. Other autistic profiles tend towards intense interest in things — creatures, vehicles, objects, places. A PDAer is more likely to fixate on emergency service workers, superheroes, fantasy characters, and individual people, either in person or as celebrities. That is a generalisation; the examples illustrate the pattern rather than covering all of it.

PDAers can fixate on one particular person at a time, needing to be with them, think about them and talk about them constantly. They may need to know everything about them, and be unusually upset if that person spends time with anybody else, even when doing so is entirely reasonable. The obsession is not necessarily romantic, though a PDAer may mistake it for romantic feeling. Fixation on a person can turn negative as well.

I have noticed that, alongside fixating on particular people, adult PDAers tend more often to be intensely interested in human behaviour, and to study it. It is commonly their special interest, or one of them. I think it grows out of high empathy, the need to play roles in order to cope, and the need for social tools to avoid demands. A PDAer ends up studying people by accident from an early age in order to survive, and later in life, on realising they understand humans rather well, at least intellectually, they usually want to learn more.

PDA and common neurodivergent traits

PDAers share the sensory, emotional regulation and executive function difficulties that other neurodivergent people have. There is some evidence, in fact, that difficulties with emotional regulation and executive function are more obvious in PDAers than in other kinds of autism, which may come down to how often ADHD co-occurs. Executive function difficulty and emotional hyper-arousal are two of the defining features of ADHD.

Autism, Spectrum disorders, conditions, disability, Aspergers, dyslexia, dyspraxia, dyscalculia, difficulty, deficiency, neurodiversity, neurodivergence, Neurodivergent, neurotype, neurology, ADHD, ASD, ASC, OCD,… Read More The language of neurodiversity – an analysis

The demand cup: infographic - Pathological Demand Avoidance

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What you may see from a PDA person at any age:

Taking control over their own lives by not conforming to given rules and expectations (even if the judgement for this hurts them). Examples include changing their given name, gender, doing things backward etc.

Taking or seeking control of the lives of others and any situation they can, though the intention is without malice, It usually comes from a place of trying to help the other party, or trying to be free.

Avoidance of demands and expectations to an extreme and widespread degree. This may mean they cannot do very normal things of which they are physically capable, and will not comply, even if they want to.

An appearance of lack of shame for extreme behaviour, though this is momentary and following an incident, shame will follow quickly and deeply.

Deriving great comfort in personal role play and fantasy, leading to an ability to mask their neurotype very effectively in certain situations.

A desire to be sociable, with an ability to engage very well with others for a time.

Exhaustion following social interaction.

Difficulty in perceiving and responding to social cues, even if they can see them.

Difficulty with social boundaries.

Difficulty in maintaining social relationships due to their need to be in control, their avoidance of demand and their struggles with social cues and boundaries.

Repetitive behaviour displayed often as fixation with another person, or people.

Restricted interest of an obsessive nature, over long periods that then moves on to another topic.

Rejection of planning and routine, with a general need for a rhythm in their lives of their own making.

Difficulty regulating their mood and emotions, reacting strongly to perceived or minor stimuli and threat.

Huge amounts of anxiety if their personal freedom is not abundant, leading to very challenging experiences and behaviours.

As a child, a PDAer may have (but not necessarily):

Been a passive baby/toddler, allowing things to be done for them more than others, or been incredibly demanding. Had some degree of language or communication delay but caught up quickly, or could have had very advanced language. Had difficulty maintaining friendships, whilst they may have made friends easily intitially. Been “obsessed” with people (usually one specific person at a time). Seemed impulsive. Disliked or heavily questioned rules, the status quo and being told they cannot do things. Displayed potentially very difficult, seemingly oppositional and defiant behaviour. Displayed high levels of anxiety. Displayed very different behaviour profiles in one setting than another.