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Describing Pathological Demand Avoidance (PDA)

I am an adult, newly identified as PDA, and probably the parent of at least two PDA children. This is the first thing I have written about PDA, and it will not be the last. My son and I are being assessed at the moment, and I am as certain of the outcome as it is possible to be. One of my daughters very clearly shows traits as well. What follows is my own understanding of this neurotype, built over a year of reading papers, watching videos, attending workshops, spending time with PDAers, living my own life and raising my son. It will differ from the standard description in circulation. If it did not differ, there would be no point in writing it.

It may not match how professionals understand PDA, and it may not match other PDAers. That is fine. I am ready to be given better information and to change my mind. I hope this helps somebody. I also quietly hope the people I have come to respect in the PDA community feel it represents them fairly. If you want the standard description, or you want to find people who have been talking about PDA for longer, or who work in this field clinically, the links are at the bottom.

What is PDA?

Pathological Demand Avoidance is currently considered a distinct profile of autism, or Autism Spectrum Condition. The name began as PDA Syndrome, given by Elizabeth Newson. She was looking at children who were suspected of being autistic, and whose difficulties, strengths and behaviour departed from “classic” autism in a few fundamental ways that were consistent with one another. At the time she treated it as a condition in its own right, sitting alongside autism the way ADHD does, with clear similarities. It has since been more widely accepted as a profile inside the autistic spectrum. My own views on this are complicated and still forming; I will touch on them as I go, but really they belong in another piece.

What does the term pathological demand avoidance actually mean?

Demand avoidance means avoiding things once they count as a demand. Simple. Everybody does it, surely? Nobody wants to be told what to do, or to get on with the jobs they loathe. The first difficulty is working out what actually counts as a demand. You might think it means somebody telling you or asking you to do something. Demands are wider than that. They cover what is asked of us, what is expected or hoped of us, what we expect of ourselves, and the plain expectations of society, such as washing yourself.

Then the pathological part arrives. Someone who is pathologically demand avoidant cannot do a thing when they experience it as a demand. They avoid more than the unpleasant tasks. They avoid things they actively want to do, because they have been told to, because it is expected, or because the expectation of how they should behave while doing it is set too high. They avoid ordinary daily tasks: washing, dressing, going to bed. They avoid things you would not recognise as demands at all, because they are placing those demands on themselves. A PDAer can be completely paralysed by their own expectations of what they believe they ought to be doing or achieving.

The PDA Society describes it like this: “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”.

Pathological demand avoidance may be the clearest behaviour of this neurotype, but it is far from the only one, and the driver behind it matters as much as the behaviour itself. It saddens me that the profile carries the name of one of the hardest things a PDA person lives with. Just now, though, there is a more pressing fight for the PDA community, and it is not served by arguing over the label. Labels and language matter enormously, but raising awareness and understanding in professional settings and in the literature is how we get PDA recognised, diagnosed consistently, and supported properly — and the naming argument can be picked up once that is underway.

The neurotype

What overrides everything else here is an intense and pervasive need for personal freedom and self-determination. A PDAer has to live by their own rules, their own code and compass, and would honestly prefer the world rearranged to fit. It is what makes PDAers such good activists and revolutionaries, the people who lead and inspire, and rather excellent company — until they have to live under somebody else's rules and demands.

Three main behaviours come out of that need for freedom.

Need for control. This is usually called an “anxiety-driven need for control”. PDAers need to be in control of most situations, and being out of control is deeply stressful, unless they have a coping strategy in place or are content to hand control over. Many professionals treat that anxiety as the engine of PDA. I disagree, and I am not the only adult PDAer who does. My argument is that the intense need for freedom is the fundamental neurology here. When the need goes unmet, or freedom is challenged, the anxiety that follows produces the need for control, the controlling behaviour, and the two behaviours below. I want to thank the adult PDAers who helped me understand that; it was genuinely enlightening. They are listed at the end.

Demand avoidance. The most visible feature of a PDAer is, unsurprisingly, someone who pathologically avoids demands from other people and the demands of daily life. The word pathologically is doing the work. It is the extreme, obsessive quality of the avoidance that points to a neurodivergent cause. Again, the trigger is personal freedom being challenged. Autistic people without PDA also avoid demands in certain situations, specifically when they are asked to do something uncomfortable for them as an autistic person, which then makes them anxious. That is not the same as the PDAer, who becomes anxious simply because a demand is present — even a demand for something they enjoy, or had wanted to do.

Picture a PDAer with a fixed capacity for demands each day. The size of that capacity depends on how much demand the previous days and weeks have taken, how anxious they are about everything else, and how much personal freedom they have been allowed recently. Daily life eats into it. By the time they have washed and dressed, a PDAer with a small capacity may 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 anyone suggesting it.

The behaviours used to avoid demands are as extreme and pervasive as the demands themselves, and they always include social strategies. If a PDAer cannot avoid the demand, or the anxiety of daily life gets too large, the anxiety becomes unbearable and ends in meltdown, which can be extremely serious for the PDAer and for the people around them. A PDAer already running anxious can move through the stages very fast, or melt down at the first hint of a demand.

Stage 1: light avoidance — distraction, procrastination, negotiation, excusing themselves.
Stage 2: strong avoidance — retreating into fantasy or role play, outrageous social behaviour, incapacitating themselves, making excuses that sound ridiculous.
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.

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

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 me it is a key factor in 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 result 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 hold on it. If a PDAer role plays with other people, you will see them dominate the whole experience.

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 definable rules they understand — which can be easier to navigate than ours.

I would describe this aspect as pathological too, because PDAers use role play in extreme ways in ordinary daily life. Here are the three commonest uses.

Resistance, restoration and retreat. A PDAer retreats 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 others want: “No, I am Elsa, and Elsa doesn't clear the table.” They will also withdraw into a role or fantasy world to ease anxiety and to make sense of social interactions they don't fully follow, which restores balance and a sense of personal freedom.

Masking. A PDAer uses 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 adults, end up with a badly disrupted sense of self. Many do not know who they are beyond a series of roles. It matters that people understand how exhausting it is to stay in role for any length of time. A PDAer who has been in role needs long stretches of rest with no demands, and without that, meltdown or shutdown is inevitable. Undiagnosed adult PDAers are frequently diagnosed with a pile of mental health conditions instead, which will definitely include some form of depression.

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 stim. More on role play as a stim from Harry Thompson here.

PDA as part of the autism 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 and emotional regulation differences and executive function difficulty. It also shares the main defining traits of autism, each in its own particular way. Those traits do show up differently in PDAers, and I will go through them below, followed by the more general neurodivergent traits.

Social communication and interaction differences

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

In recent years it has become clear that PDAers do struggle with social communication, though not in the way other autistic profiles do. Many professionals describe it as “surface level sociability with a lack of deeper understanding”. I can see how they got there, but I think the description misleads.

As I see it, PDAers usually have a very sharp understanding of human behaviour and a solid grasp of what is happening 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 a failure of understanding.

“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 common situations where one person — a teacher, a police officer, a manager — is treated as more important and given more power. A PDAer finds any loss of control unbearable, and 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.

Where the footing 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, and 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 ASD. 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.

Restrictive interests and repetitive behaviours

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.

The interest of a PDAer is also 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.

I have also 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.

I have some thoughts on how PDA “restricted interests” resemble the way ADHD people hyper-focus. That probably needs an article of its own, but it is another reason PDA looks like it has a great deal in common with both ADHD and ASD.

PDA and common neurodivergent traits

PDAers share the sensory, emotional regulation and executive function difficulties that other neurodivergent people have. There is some evidence that difficulties with emotional regulation and executive function are more obvious in PDAers than in other neurotypes, which is again similar to the ADHD profile, and may come down to how often ADHD co-occurs. Taken with everything else, it suggests to me that PDA might be a neurotype of its own, overlapping both autism and ADHD without being either. That interests me a great deal, and I would like to investigate it properly. My view, right now, is that it would be more useful to drop the categories altogether and start looking at genuinely individual profiles of neurodivergence.

PDA summary

In short, PDA is currently believed to be a specific form of autism with an intense and pervasive need for personal freedom at its core.

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

taking control of their own life by not conforming to given rules and expectations, even when the judgement for that hurts them — changing their name, their gender, doing things backwards
taking or seeking control of other people's lives and of any situation they can, though without malice; usually it comes from wanting to help, or wanting to be free
avoiding demands and expectations to an extreme and widespread degree, which may mean they cannot do very ordinary things they are physically capable of, and will not comply even when they want to
an appearance of no shame about extreme behaviour, though it is momentary, and shame follows quickly
taking great comfort in personal role play and fantasy, which lets them mask their neurotype very effectively in some situations
wanting to be sociable, with an ability to engage very well with others for a time
exhaustion after social interaction
difficulty perceiving and responding to social cues, even when they can see them
difficulty with social boundaries
difficulty maintaining social relationships, because of the need to be in control, the avoidance of demand, and the trouble with cues and boundaries
repetitive behaviour, often showing as fixation on another person, or on people generally
difficulty regulating mood and emotions, reacting strongly to minor or perceived stimuli
enormous anxiety when personal freedom is scarce, which leads to very challenging experiences and behaviour

As a child, a PDAer may have — though not necessarily:

been a passive baby, letting things be done for them more than other babies
had some degree of language or communication delay, then caught up quickly
had difficulty maintaining friendships
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 something
shown very difficult, seemingly oppositional and defiant behaviour

Living with PDA

Being a PDA adult or a PDA child can be extremely hard, because this is not an easy neurology to carry through the world, though there are plenty of positive sides to it as well. It is complicated, and it is individual. Being the loved one of someone with PDA, including being their parent, can be hard too. Watching someone struggle is painful. The thing worth holding on to is that your PDA human is not trying to give you a hard time; they are having a hard time. There is a great deal that can be done to make relationships calmer, as a PDA person and with one, and I will be writing about it, probably often.