As an adult, newly identified as PDA, with probably at least two PDA children.
didn’t, what would be the point of writing it. It may not fall in line with the understanding of professionals or of other PDAers. That is fine with me, but I stand ready to be given new information and change my view.
I hope this is helpful. I also secretly hope that the amazing people I have come to respect in the PDA community find this represents PDA correctly. If you want to read the standard description of PDA, or you want to find other people who have talked about it more than I have, understood it longer or are clinical professionals in this area, please scroll to the bottom for all the links.
What is PDA?
Pathological Demand Avoidance (PDA) is currently considered a distinct profile of autism, or an Autism Spectrum Condition (ASC).
It was originally called PDA Syndrome by Elizabeth Newson who observed a phenomenon in children suspected of having autism, whose difficulties, strengths and behaviours deviated from "classic" autism in some fundamental ways that were consistent with each other. She viewed it at the time as a separate condition (like ADHD) that had similarities to autism, but it has now been more widely recognised as a profile within the autism spectrum.
My views on this are complex and still forming. I will touch on this throughout this article but really that is a topic for another day.
What does the term Pathological Demand Avoidance actually mean?
Demand avoidance is simply avoiding doing things when they are considered a demand. Sounds simple. We all do it right? We don't want to do what we are told or do the stuff we find unpleasant! The first tricky bit of this is considering what is actually a demand. You may imagine it is when someone tells or asks you to do something. Actually demands are more widespread than this, constituting things that are asked of us, things that are expected or hoped of us, things that we expect of ourselves, including things that are just the normal expectations of society, like washing yourself.
Here is where the pathological bit comes in. People who are pathologically demand avoidant cannot do things when they perceive them as a demand. They avoid not only unpleasant tasks, but things they actually want to do, simply because they are told to, expected to, or the expectation of certain behaviour whilst doing it is too high. They avoid normal, everyday tasks like washing themselves, getting dressed, and going to bed. They avoid things that you wouldn't even see as a demand, because they demand them of themselves. PDAers can be paralysed by their expectations of what they believe they should be doing or achieving.
From the PDA society website:
"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”.
Although this pathological demand avoidance is clearly a key behaviour of this neurotype, it is certainly not the only feature and it is important to understand the driver behind it and the other characteristics of PDA. It is a little sad to me that the profile is named after one of the biggest struggles that a PDA person faces. However, right now there is a more important fight for the PDA community that isn't best served by quibbling over what it is called. Labels and language are super important, but by increasing the awareness and understanding of this neurotype in professional settings, and in the appropriate literature, we can potentially address this whilst we, more importantly, ensure that PDA is recognised, diagnosed more consistently and support systems are put in place.
The overriding feature of this neurotype is an intense and pervasive need for personal freedom and self-determination.
The PDAer needs to live their life according to their own rules, their own code and compass, and would really prefer the world changed to fit that. This makes PDAers great activists and revolutionaries, people who lead and inspire others and ultimately pretty awesome people, except when they have to live under other people’s rules and demands.
PDAers exhibit three main behaviours that stem from this intense need for freedom:
Need for control
The first is often and most commonly described as an “anxiety-driven need for control”. PDAers need to be in control in most situations and find it very stressful when they are not, unless they have put in place a coping strategy or are happy to surrender their control willingly. Many professionals describe this anxiety as the driving force of PDA, but I disagree and I know I am not alone amongst adult PDAers.
I contend that the intense need for freedom is the fundamental neurology of the PDAer, and when this pervasive need is not met, or freedom is challenged, the consequent anxiety leads to a need for control, and the following two behaviours of PDAers. I want to thank several adult PDAers for helping me to understand this; it was enlightening for me personally. They are listed right at the bottom of the article.
The most obviously observed feature of the PDAer is, unsurprisingly, a person who will pathologically avoid demands from others and the demands of everyday life. The word "pathologically" is key here. It is the extreme and obsessive nature of the avoidance that implies there is a neurodivergent cause. This behaviour is again caused by their need for personal freedom being challenged. Autistic people who are not PDA display demand avoidant behaviour in certain situations, specifically when they are asked to do things that are uncomfortable for them as an Autistic person and therefore become anxious. This is not the same as the PDAer who will become anxious simply because a demand (even one for something they enjoy or wanted to do) is present.
Imagine if you will that a PDAer only has a certain capacity for demands in a day. The size of their capacity depends on how much demand has happened in the days and weeks before, how anxious they feel about other things and how much personal freedom they have been allowed recently. The demands of life take up some of this, so by the time they have washed and dressed, a PDAer with a small capacity might be done. The PDAer may choose not to do those things to give them capacity for things they would prefer to do. A PDAer can learn to regulate this capacity but must be allowed to do this freely, without suggestion.
The behaviours that PDAers will use to avoid demands can be equally extreme and pervasive and always include some social avoidance strategies. If a PDAer cannot avoid a demand, or the anxiety caused by the demands of life are too great, their anxiety will become too intense and they will end up in meltdown, which can be extremely serious for both the PDAer and the people around them. A PDAer who is in a general state of anxiety may skip very quickly though the stages or may immediately melt down at the slightest hint of demand.
*Please note that this Stage 3 behaviour is a panic attack and needs to be cared for as such.
Fantasy and role play
The third behaviour derived from the need for personal freedom is often down-played as simply “a possible feature of PDA that is potentially distinct from other autism profiles“. Role play and fantasy mind play is for me a key factor in this neurotype. PDAers are very comfortable (often obsessively) in role play or in their own personal fantasies (sometimes called day dreaming). I believe that as a direct result of the PDAer's need for personal freedom, they learn very quickly to retreat into their own personal worlds and characters that are entirely of their own making. This is something the PDAer has complete control over and complete freedom within. No external person has any control of this. If a PDAer chooses to role play with others, you will see them dominate the experience for the other person.
In Autistic people who do not have PDA, role play and fantasy may be something they struggle with, or they may enjoy much more formal role play as adults, entering effectively into another society that has definable rules that they understand and is potentially not as difficult to navigate as our society.
I believe this aspect to also be best described as pathological. This is because PDAers use role play in extreme ways in their everyday life. Here are the three most common ways that PDAers use role play to survive with their neurotype.
Resistance, restoration and retreat
The PDAer will retreat into their own personal fantasies and role play in their mind to resist the demands of everyday life. They may also use a role or persona externally as a stage 1 social strategy to resist the demands of others. “No I am Elsa and Elsa doesn’t clear the table”.
PDAers will also retreat into a role or fantasy world to ease their anxiety and to try to make sense of social interactions they don't fully understand. This can restore balance and a sense of personal freedom.
The PDAer uses their comfort in role play to create a role or character in their mind that allows them to mask their difficulties from certain people or in certain places. This is an immense skill that can allow some PDAers to hide their struggles from society. This can be so pervasive that PDA is often missed or misdiagnosed and PDAers, especially those who are now adults, have a hugely disrupted sense of self. They often do not know who they are, other than as a series of roles that they play. It is key to understand that playing roles (masking) for any length of time is exhausting. PDAers who have been “in role” will need significant periods of rest with no demands to recover. If they do not get this melt down or shut down are inevitable. In undiagnosed PDA adults, they will often be diagnosed with all kinds of mental health conditions, which will definitely include some form of depression.
Self-stimulatory behaviour (stimming)
To the PDAer, the act of creating a world for yourself, creating a character for yourself in your mind or fantasising about a particular interest, is in fact the most comforting sensation they could experience. When we understand that “stimming" is usually used as a self-soothing behaviour, we can see how role play could be a stim for the PDAer. More on role play as a stim from Harry Thompson here.
PDA as part of the autism spectrum
The reason that PDA is described as a part of the autism spectrum, rather than being its own neurodivergence, is that it not only shares those features commonly found with most neurodivergences (including ADHD, SLD, OCD etc) such as sensory and emotional regulation differences and executive function issues, it also shares the main definable traits of autism spectrum in its own way. These features do present differently in PDAers though. I will describe these below and how the PDA neurotype differs from the norm with these, and then the more general neurodivergent traits.
Social communication and interaction differences
One of the reasons that this was thought to be a different condition than autism is that it was believed the the PDAer did not struggle with social communication and interaction at first. PDAers are often very social people, liking being around others and liked by people. PDAers are often charming, fun and exciting to be around, at least some of the time.
In more recent years it has been further observed that PDAers struggle with social communication but not in the same way as with other autistic profiles. Many professionals describe this as having “surface level sociability with a lack of deeper understanding” and although I can see how they came to this conclusion, I think this description may be misleading.
It appears to me that PDAers have, in most cases, a very astute understanding of human behaviour and a solid ability to understand what is happening for other people. I also believe that empathy usually scores very highly in the PDAer in much the same way as it does with ADHD, both in an emotional and a cognitive sense. However, it seems that the PDAer doesn’t always have the ability to put into practice complex social skills in a given moment. This means that, although surface level relationships and general social skills can be easy for the PDAer, especially if on their own terms, long-term relationships, or navigating complicated situations or dynamics, can be virtually impossible. I do not think this is through a lack 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 appear to lack the ability to observe and respond to normal social boundaries due to having such a strong sense of themselves as deserving freedom. This makes a PDAer believe that they are, and should always be treated as, equal to everyone else. Whilst of course this is true and everyone should be, the rules of our society are quite different. There are common situations where one person, for example teachers, police officers and managers, are viewed as more important, wielding more power and influence. The PDAer will not only find any loss of control untenable, they will not understand why they are not able to freely challenge a person, regardless of their social status. They also won’t very much care, because these rules seem ridiculous.
In situations where there is a more socially equal footing, the PDAer may struggle socially because their need for freedom fundamentally overtakes their cognitive ability to read cues. The cues are there, and the PDAer might in reflection be able to read them, but in the moment,their freedom to speak, to give their opinion, voice their idea or take control is too strong. Afterwards there will potentially be shame at a mistake, and confusion because on reflection they may not be able to understand what happened due to being so caught up in their own free thinking.
This is one way that PDA is in some ways more similar to ADHD than ASD. People with ADHD struggle with social relationships, which is attributed to impulsive, hyperactive and inattentive communication, leaving people finding the ADHD person rude, thoughtless or uninterested.
Restrictive interests and repetitive behaviours
PDAers may display restricted areas of interest like Autistic people, and may even be less inclined than other Autistics to do and discuss things outside their field, due to this impinging on their personal freedom. Sometimes this might be less obvious in a PDAer due to the type of interests that they commonly pursue.
A PDAer’s area of interest is also more likely to relate to people in some way. Whilst other Autistic profiles tend towards intense interest in things like creatures, vehicles, objects and places, the PDAer is more likely to fixate on emergency service people, super-heroes, fantasy characters, and individual people, either in person or as celebrities. This is a generalisation of course, and the examples above are illustrative rather than exhaustive.
PDAers can become fixated on one particular person at a time, feeling a need to be with them, think about them, and talk about them constantly. They may need to know everything about them and feel unusually upset if the person spends any time with anyone else, even if this is completely reasonable. This obsession isn't necessarily romantic in nature, but a PDAer may mistake obsession for romantic feelings.
I have observed that, as well as commonly becoming fixated with particular people, adult PDAers have a greater tendency to be intensely interested in, and often study, human behaviour. This is commonly one of, or the, special interest of an adult PDAer. I believe that this stems from a high level of empathy, a need to “play roles” in order to cope with life, and a need to use social tools to avoid demands. PDAers accidentally study human behaviour in order to survive from a young age and so later in life, when they realise they actually understand humans pretty well, at least intellectually, they tend to want to learn more.
I have some interesting thoughts here regarding the similarities between the way the PDAers present “restricted interests” and the way ADHD people hyper-focus. I feel like this may require a whole article of its own but I would like to draw your attention to this as another potential example of how PDA seems to have much in common with both ADHD and ASD.
PDA and common neurodivergent traits
PDAers share the same issues with sensory and emotional regulation and with executive function as other neurodivergent people. In fact, there is some evidence that PDAers’ difficulties with both emotional regulation and executive function may be more evident than with other neurotypes. This is again similar to ADHD which also shows that profile. This may be due to the higher instance of the co-occurrence of ADHD. It potentially suggests to me, alongside my other points, that PDA is potentially its own neurotype that somewhat overlaps both autism and ADHD but is actually neither. This is of great interest to me and something I would like to investigate and discuss further. My ultimate view though, right now, is that it would be more helpful to de-categorise all of these and start looking at truly individual profiles of neurodivergence.
As a quick summary, PDA is currently believed to be a specific form of autism that has at its core, an intense and pervasive need for personal freedom.
What you will see from a PDA person at any age is:
As a child, a PDAer may have (but not necessarily):
Living with PDA
Being a PDA adult or child can be extremely challenging because the world is not an easy place to have this neurology, though PDA can also have a lot of positive aspects. This is complicated and individual. Being the loved one, including being a parent, of someone with PDA can also be challenging. Watching someone struggle in life is tough. It is important to remember that your PDA human is not trying to give you a hard time, they are having a hard time. There is lots that can be done to have calmer relationships as, and with, a PDA person and I will write about this, probably often, in the future.
Written by Emily Wilding Fackrell