Theorists, behaviouralists, researchers, autistics, PDA individuals and advocates, and know-it-all Facebook trolls all have remarkably different beliefs about what PDA is.
I have heard that it;
· Does not exist
· Is purely a trauma response
· That it is just naughty and challenging behaviour
· That it is a mix of Autism, Sensory Processing Disorder and ADHD
· That it is a personality disorder
· That it is a profile on the Autistic Spectrum.
Personally, I can’t entirely agree with any of the above.
I think the closest of these theories is that it is a profile on the Autistic Spectrum. I don’t believe that it’s part of the Autistic Spectrum, but that it’s from the same family tree, an off-shoot neurotype different from its ancestors but shares some elements.
PDA is not a disease or a disorder. It is a neurotype in its own right because, although it shares some characteristics with autistics, there are more that are either conflicting with autistic ones or are entirely different. This is also true of a PDA individual’s needs compared to those of an autistic.
It is also true that, like Autism, PDA is a spectrum, and every PDAer is different and individual.
When looking at Pathological Demand Avoidance, the first thing to note is that the name is a complete misnomer. It focuses solely on demand avoidance which, when you look at a PDA individual’s neurology and needs, is only a small part of what makes us who we are.
Demand Avoidance
The demand avoidance exhibited by PDA individuals is irrational; there is rarely a reason behind us avoiding what you are asking us to do; we simply cannot do it. It is like a brick wall has appeared between your request and our ability to act on it that cannot be breached or overcome. By labelling it ‘pathological’ (by definition in the Collins dictionary ‘You describe a person or their behaviour as pathological when they behave in an extreme and unacceptable way and have very powerful feelings that they cannot control’ and is ‘involving or caused by a physical or mental disease’) you are entirely undermining their freedom of choice by saying that their avoidance is ‘extreme and unacceptable’; it is only extreme and unacceptable to the person making the request; not the PDA individual themselves. Also, referring to it as a ‘physical or mental disease’ is not only utterly disrespectful, ignorant, and offensive; it is entirely wrong.
Now here is where it can get a bit confusing; not every demand is avoided. It greatly depends on how safe, calm and regulated the PDA individual is at the time the demand is made, how the request is made (not how it is said, per se, but the motives behind the request), and whether you are interrupting them from what they are enjoying doing or are hyper-focusing on.
This label ‘Pathological Demand Avoidance’ also makes it difficult for parents or clinicians to understand the child correctly. When they incorrectly label them as PDA simply because they are very demand avoidant; thus causing them to get the wrong support and guidance that they personally need. All autistics have a level of demand avoidance – the difference between PDA demand avoidance and autistic demand avoidance is that, for autistics, the avoidance is rational; there is an apparent reason why they don’t want to do the task; they think it’s too hard/they’re tired/it doesn’t look fun, etc.
An interesting and equally frustrating quality of PDA demand avoidance is that we also avoid things that we want to do. This can be mistaken for lack of executive function (where you cannot bring yourself to do something or anything), but it is markedly different in that it is not affected by energy levels, motivation, or urgency. Sometimes we just can’t make ourselves do it, no matter how much we want to.
An interesting flip side to this is that we can be very demanding! We do like attention and being able to get what we want and need from who can either provide it or help us get it.
I admit it drives me NUTS when people claim that they are PDA when they are actually Autistic with demand avoidance. Even if that level of demand avoidance is high – that doesn’t equate to you being PDA! There is SOOOOOOOO much more to it than that!
Autonomy, Freedom, and Control
The single most important thing to a PDA individual is their autonomy; to decide things for themselves and be in complete control of what they do and where they are going. I know what you’re thinking; Doesn’t every living creature want that? You would be right. But, for PDAers, it goes far deeper than that. The need for autonomy is directly linked to our anxiety, feelings of safety, and ability to cope in a situation. It isn’t a ‘want’ like all living creatures; it’s a ‘need’.
I cannot stress the above point enough. By taking away a PDA individual’s autonomy, you will be causing them a great deal of anxiety and stress, which could build up to mental health issues, long-term, or to an explosive reaction.
Freedom is the goal that all PDA individuals strive towards and thrive in once they reach it. It is like oxygen to us. Without it, we feel restrained and may use every trick in our arsenal to break free and regain our freedom.
An example of this is, recently, the Forum that I work with were tightening up their rules and procedures and, although I, rationally, agreed wholeheartedly with the need for these rules and procedures to be put in place in order for the Forum to run more smoothly and professionally, the idea of being restricted by these rules and procedures sent me into flight mode. It felt like someone was raking a fork along all of my bones at the same time. It was utterly intolerable, even though I, rationally, ultimately agreed with them. The thought of those restrictions and loss of freedom was too much for me to cope with.
Next in line is our need for control, which can be all-encompassing. Directly linked to our need for freedom and autonomy, it is what makes us safe as; when you are in control, you have the freedom of choice, movement, and when others are in control, it can impact our freedom and autonomy. Not being in control is like waking up in the middle of the ocean, on a flimsy raft, with no oars and no land in sight. When we aren’t in control, all we are focused on is gaining control – much like our freedom.
Routine
Unlike autistics, who thrive in strict routines and struggle to cope outside of routines, PDAers are routine and system breakers. We need variety, choice, and autonomy. We get bored in stagnant routines and need to be outside of our restraints. Routines are a way of binding and restricting us. Systems are the same, just on a larger scale – they impose rules, procedures, and routines that often are not entirely fit for purpose and PDAers are highly skilled at seeing these faults and will strive to destroy them so that they can be rebuilt in a far more efficient and effective way. Don’t get me wrong; routines feel safe and comfortable, and often we are happy to follow them. But we need to have the freedom to deviate from them as and when we choose.
Empathy
Like most autistics, we are highly empathic beings, unlike the age-old description of autistics completely lacking empathy. We feel incredibly deeply and love fiercely. However, these feelings shut down quickly if someone is trying to manipulate a specific response from us. We need the freedom of our own emotions as well! Feeling deeply is both a blessing and a curse as you can become sponge-like, soaking up the emotions of everyone around you, which can be entirely overwhelming. In these situations, we can shield ourselves, shutting down our emotions or empathy in order to protect ourselves from the bombardment of feeling too much. Sadly, this can appear to others that we are uncaring when in reality, it couldn’t be further from the truth.
Equality and Fairness
We need equality and fairness; it doesn’t make sense in our brains why everyone isn’t on the same level and to be treated and respected equally. This is often a cause of why we buck against authority figures so much, aside from rejecting anyone who tries to tell us what to do!
I have referred to PDAers on several occasions as the World changers. We have a strong desire to right wrongs and to tear down ineffective and unfair systems. This doesn’t mean that we’re social justice keyboard warriors – far from it! We want to get rid of systems that aren’t working for everyone and rebuild them so that they provide the best service they can, to the most people, equally.
This is similar to the fact that we enjoy digging into the root cause of things. We rarely look at things at face value and want to pick away at them until we understand what the foundations are—for example, narcissistic personality disorder. Many people’s first reaction to this is one of disdain and wanting to avoid it altogether. But PDAers want to talk about it; unpick it right back to its root cause; what is the reason that narcissists need the input they need from others? What caused that person to become narcissistic? Is it borne from deep-seeded insecurities? If that’s the case, should there be more of an empathetic response to those classified as narcissists? How can they best be supported?
The PDA Flow
We can be very impulsive (it is pretty common for a PDAer also to be ADHD) and throw ourselves bodily into everything we do.
Harry Thompson – PDA Extraordinaire has coined the term ‘the PDA Flow’, which is very accurate. When we are doing something that is exactly what we want to do when we want to do it and that we have control over, it is the most euphoric feeling; like the stars have aligned. But when we are disturbed or pulled out of that flow, it is a very jarring experience and can cause an explosive reaction for anyone who has disturbed us or tried to pull us out of it. It can be incredibly distressing for us.
Friendships
Friendships between PDAers can be equally wonderful and challenging! Being friends with someone who completely understands how your brain works and how you see the World brings an incredible feeling of belonging and understanding, which a lot of Autistics and PDAers yearn for (we live in a world where we don’t feel like we belong and are not often understood by others). It’s a relationship where no topic is out of bounds, with little to no judgements made. However, our mutual need for control can cause problems. There can be an almost ‘tug of war’ effect if something crops up around one having control over the other, which can lead to arguments, upset, or dissolvement of the friendship altogether.
Role-play and Imagination
One thing that makes us stand apart from Autistics is that we have a rich imaginative life.
Often, this is a means of escape from the World, whether in the form of taking on the role of being either someone else, an animal, or an inanimate object, or playing role-playing games (like Dungeons and Dragons, etc.) or by writing creatively.
There is something very freeing about stepping out of your own life for a while and taking on the persona and role of someone or something else. Both Autistics and PDAers feel stress, pressure, overwhelm, and that they are different in the real World.
By pretending to be someone or something else, you strip all of that away and can just exist as someone or something else that doesn’t feel all of that.
School
Sadly, PDAers often struggle greatly with school. The strict routine, curriculum, constant demands, and authority figures make it nigh on impossible for us to survive education without either being cited as having ‘behavioural issues’, being excluded, becoming a school refuser, or having damaged mental health.
Thankfully, many other educational options are available now; Elective Home Education, Unschooling, Educated Other Than At School, Alternative Provisions, etc.
But, if you can find a school that has a very flexible and nurturing approach to educating PDA children and young people, then PDA children can thrive there.
Anxiety and Rejection Sensitivity Dysphoria
Unfortunately, anxiety is something that plagues both Autistics and PDAers, which a wide variety of things can trigger; anything from making a phone call to leaving the house, going to the supermarket, meeting up with friends, opening emails, going to school, even just thinking about something can cause a great deal of anxiety.
For PDAers, the most common cause of anxiety is the threat of losing their freedom or control in any situation or even the possibility of it.
When a PDAer is told that they cannot do something they want to do, a massive wave of anxiety and panic can set in. It is not a reaction typically found in a spoilt child or entitled adult; the mind and body react to this as if it is under attack. Their freedom or control has been snatched away from them, and this is akin to someone taking your breathing mask away when you’re scuba diving 100 feet underwater.
Those who have taken that control and freedom can then be the target of the PDAers panic or fight/flight reaction, which can take the form of them verbally or physically lashing out, running away, freezing to the spot, or fawning. For those unfamiliar with fawning, this is a defence response where the person becomes solely focused on pleasing the person who has presented the threat. By pleasing the person, they are less likely to cause harm.
When others react badly to the PDAers panic or defence reaction (that often they have no control over), this can cause damage to their self-esteem, mental health, and emotional wellbeing, as they are being punished for something they had no control over—punished for trying to protect themselves from a perceived threat.
Rejection Sensitivity Dysphoria (RSD) is very common with PDAers. This is where any rejection or criticism, real or perceived, triggers an extreme emotional response.
Nobody likes to be criticised or rejected, but for those with RSD, it can be utterly crushing. The scene of the rejection or criticism can play in their head in an ongoing loop, accompanied by a nearly obsessive level of analysis and self-punishment. Very often, they will believe that they have caused the rejection or criticism and will become fearful of entering situations that are similar to the triggering event in case the same thing happens again.
Most people can bounce back relatively quickly from rejection or criticism or just brush it off and move on. For those with RSD, it can take months, sometimes years, to heal from it.
Special Interests
Special interests, for Autistics, are topics or items that dominate over any other interest. Indulging in these can bring a nearly euphoric feeling, a calmness that soothes and self-regulates them, and is a wonderful escape from an often overwhelming and challenging world.
PDAers also have special interests, but, for us, they are, primarily, people. These can be famous people, characters in a film or book, or someone that we know. There will be a deep desire to learn everything there is to know about that person; who they are at their core, what they do, etc. If they are a famous person, watching their performances, or reading about them, will bring comfort and joy. There is the added bonus of getting a dopamine rush whenever we research them, interact with them, watch their performances, etc.
It may be that, when stressed or feeling low, PDAers turn to their special interest for both an escape and for a much needed dopamine hit.
There is a twist to this; we can also have negative special interests. This is where we take such an extreme, often instant, dislike for someone, and we will want to know all about them still, but this is a polar opposite of what we feel for our positive special interests.
Sense of Humour and Bluntness
Many PDAers have quite a dark sense of humour. This can also include finding inappropriate things amusing that others may baulk at. We often find humour or fun in most situations.
PDAers are usually very open, honest, and straight-talking people, not backwards about coming forwards, as the saying goes. We are often seen as being blunt and that we speak our minds, which is something that is not always appreciated!
Without sounding bias, PDAers are my favourite kind of people. Those that I know are warm-hearted, loyal, honest, straightforward people with a great, yet twisted, sense of humour who would go above and beyond for those they care about.