The other response we get, a lot, is that all autistic people experience demand avoidance and therefore PDA does not require it's own diagnosis. I hear this a lot and from autistic advocates, professionals, commissioning groups and autistic people. It is a fundamental misunderstanding of PDA.
"Normal" demand avoidance
The thing is they are right that all humans do experience demand avoidance. They are also right that many autistic people avoid some demands to a greater extent than their neurotypical peers. What very few people seem to understand is how this behaviour can ever be pathological.
From my experience and understanding all human beings experience demand avoidance. We all procrastinate rather than doing the thing we know we are supposed to be doing, often because it is hard and we aren't sure how to start, or because we are exhausted, or because we are afraid we will do it badly, or because we genuinely don't want to do the thing. We put things off, get others to do things for us or just fail to do the thing entirely,
There are three factors here that I can see, motivation, anxiety and executive function. each of these things are neurological and each of them impact neurotypical people and neurodivergent people to different extents. Once I have explored each of these in turn, I will describe the two other forms of demand avoidance: Neurodivergent (or Autistic) Demand Avoidance and Pathological Demand Avoidance.
I will also help to explain the use of the word "pathological" because, having had many discussions with all kinds of people, including PDAers themselves, most don't even understand what the term "pathological" means in this context.
In order for a human being to do anything, they have to be motivated. It is that simple.
People are born intrinsically (internally without influence from others) motivated to meet their human needs. These needs get more complex and although all humans have common human needs, they vary in intensity and proportion for every human. I will write more on this in another blog but it is important to understand that because our needs vary, so does our motivation. As we develop in this society we find can be motivated in many ways, including being self-motivated. Some people have been programmed to be motivated by things that are external to them, and others only feel motivated by internal feelings (such as exploration, feelings of self-worth and recognition). The key thing is that you cannot fake it. Like sexual arousal, you are either motivated or you are not (you cannot tell yourself to be turned on).
Here is an example: Most people do not ever really "want" to wash the dishes. However, most adults are motivated by having clean dishes and a clean, tidy kitchen. If you ask a teenager to do it for you, they are not motivated by this, but could be motivated by pleasing you, or feeling like they have helped. If not, they may be motivated by receiving some kind of reward you have offered them (not how I parent but many do).
Let's look at the science: The brain functions through passing electrical signals down neural pathways. It does this using chemicals known as neurotransmitters. There are different ones for different things. The neurotransmitter that is understood to influence motivation (once thought to induce pleasure), is dopamine, a chemical that is triggered when your brain recognises something important is about to happen or needs to happen. When we are motivated, regardless of how, dopamine makes our neurons fire, and we act. When we are not motivated, no dopamine, no action.
I believe that it is in human needs and motivation that we will ultimately find the neurological answers to PDA but for now, I just want to focus on the differences in demand avoidance.
Avoiding doing things is always significantly higher when anxiety is involved. If someone is scared, they will completely naturally avoid the thing that is causing them fear at all costs. Their motivation (if they had any) is over-ridden by their threat system telling them not to act. I bet everyone reading this can thing of something they are afraid of and therefore will choose not to do, even if they are told to do it, asked to do it, expected to do it or even if they wanted to do it.
Say you are at work and everyone is required to do a team building day and you like the idea but you are genuinely terrified of heights and you know there will be a zip wire. You are likely to try and avoid doing the day. You may negotiate with your boss, procrastinate getting the childcare needed to go, find yourself feeling so unwell the night before that you couldn't possibly go. Depending on the level of your anxiety, you may refuse completely to go without caring about the consequences, or you may quit your job, I have seen it happen.
Scientifically, the part of your brain that assesses and responds to threats (the amygdala) sees the day out as quite as serious as being attacked by a sabre toothed tiger, and responds accordingly. It protects you by shutting down the human reasoning part of the brain (neocortex) to ensure that you do not overthink this threat and you act quickly. You go into survival mode (responses include the five Fs - more on this in another blog) and there is no rational thought in sight.
It can be normal to respond this way to a perceived threat, but sometimes some people are prone to feeling more generally anxious a lot of the time and regarding many things. This can be caused by the brain not producing the correct levels of the neurotransmitter seratonin. This neurotransmitter is understood to regulate, among other things, our mood and our general perception of threats. People with general anxiety disorder will have this response to a larger number of things than a typical person.
Executive function is the part of your brain that ideally, is a bit like a really awesome personal assistant. It keeps you organised, remembers what you are supposed to be doing, prioritises those things correctly, makes you start the right task, keeps you on that task and makes sure you complete it, then onto the next. Unfortunately some personal assistants are better than others. If you are someone with a really shit personal assistant in your brain, you might have giggled ironically at my description and you will know just what it is like to avoid tasks because you can't get started or because you can already see how many mini tasks there are within that big task, and you just know no-one is keeping you on track.
Again, everyone experiences this to a mild extent. We have all needed to do an essay and instead cleaned our entire house.
Executive function in the brain happens through a combination of neurotransmitters allowing multiple areas of the brain to work together to make shit happen in a logical way. The combined impact of dopamine, serotonin and norepinephrine offer alertness, prioritisation, selection of behaviour and attention to reach goals, including both action, planning, inhibition, and control of emotions like low level anxiety.
ADHD people and often autistic people both experience deficiencies in their executive function, thought to be due to poor neurotransmitters.
Neurodivergent Demand Avoidance
All people who are neurologically different live in a society that was not created with them in mind. The differences in the way their brains interpret and process information provides them with opportunities to achieve more in some areas, but in this society they experience environments that their brains perceive as threats. Differences in sensory, and emotional regulation, as well as having differing needs for predictability and connection commonly cause neurodivergent people to experience high levels of anxiety. Equally, issues with executive function mean that control of attention, planning and overcoming low level threats is compromised. I have use the term neurodivergent here and not autistic because ADHD can also cause difficulties with social interaction and has a huge impact on executive function. ADHDers also often develop a learned anxiety to certain types of task due to consistent previous "failure" due to their neurology.
Understanding these factors, and the above information regarding anxiety and executive function, we can see how neurodivergent people experience more opportunities for anxiety and executive function issues, which often results in a greater degree of demand avoidance. The avoidance in these cases may be extreme and happen often, but it occurs as a result of, either a deficit of executive function or, trying to avoid a task or situation that causes anxiety, such as social gatherings, making phone calls or going to unfamiliar places.
This is the same, "normal", demand avoidance that everyone experiences but the likelihood of it happening is increased. There is also potential for neurodivergent people to have a more extreme reaction to their anxiety due to executive function playing a part in emotional control. This means that they are likely to display meltdown and shutdown and may go to more extreme measures to avoid things than a typical person, and if they are triggered into a general state of anxiety, they are likely to experience more general demand avoidance due to being afraid of everything.
Before I explain how PDA is different, you need to understand the word pathological:
Pathological. I know it sounds awful, and it does because we associate it with things being wrong or diseased in some way, and it can mean this. But pathological also means "being such to a degree that is extreme, excessive, or markedly abnormal" (Merriam-Webster Dictionary). It simply means in this case that the demand avoidance is atypical. Whilst I don't like the fact that the PDA neurotype is named after the demand avoidance that is experienced by the PDAer, I do agree that the demand avoidance experienced in PDA is extreme, excessive and completely different in nature to other demand avoidance, which is where the huge misunderstanding comes.
Here is why it is fundamentally different:
Pathological demand avoidance
Rather than the PDAer experiencing anxiety about something, and therefore avoiding the demand related to the source of anxiety, the thing that makes the PDAer anxious is demand itself.
Yes, a PDAer can be anxious about any or all of the usual things, and that can cause "normal" demand avoidance, and general anxiety, but in the PDAer it is the demand itself that is the main cause of all their anxiety. Demands can be internal, subtle and even in relation to something the PDAer wants to do and still be perceived in the brain as a threat.
To the PDAer, someone making you do something, asking you to do something, hassling you, reminding you, prompting you, as well as people's expectations of you, your expectations and desires for yourself, are all demands and all create anxiety. It makes no difference necessarily what the demand is. It can and does include seemingly trivial things, like washing or dressing, and things that we want to do. The lower our general anxiety, like with others, the more likely we are to be able to overcome this and do things we choose to. However, if it is taken out of our control and a demand is placed, we will still be triggered.
A good example is Taekwondo for me: I am a black belt and I love Taekwondo. I want to go. I love it. I could go everyday. When I feel generally anxious this is harder but when I am generally ok it is fine. However, if there is too much expectation that I will go to a particular class (I am the only instructor there), or if someone reminds and prompts me to get ready, I will not be able to go. It will feel like an invisible wall has just been built in my way. If someone then insists or pushes me to do it, I will end up in emotional meltdown.
This is where you can see that our response to demand is completely atypical.
It is easy to see that in the PDA brain, the amygdala recognises "demand" as a serious threat. If you are a PDAer or you have spent any time with a PDAer, you will know that when faced with demand of all kinds, the PDAer panics and will do anything to avoid the demand, and in many cases, destroy the authority of the demander.
When their threat system kicks in there is nothing anyone can do. Understanding that the extreme responses you see in a PDAer are panic (resulting in fight, flight, freeze and fawn) is seriously important. Fear responses can often look like anger, vindictiveness, lethargy, laziness, insanity, and even compliance in the extreme. They are still just fear.
But what are they afraid of? What is happening in the brain that causes demand itself to trigger a threat response?
But is it Demand that is the threat?
Well I don't actually believe that demand is the answer. That is why I do hate the name of this neurotype. The above is absolutely true and we do experience pathological demand avoidance, but I fundamentally believe that the thing that the PDA brain perceives as a real threat, like with anyone else, is a threat to their most prominent human need. In the case of the PDAer, their most prominent human need is autonomy (with novelty coming in close second). Demand is simply one way that our environment compromises our autonomy.
My theory is that demand avoidance in PDA is fundamentally different to normal or common neurodivergent demand avoidance because there is a fundamentally different human need driving it, and our society has a greater negative impact on this human need than any other.
Why is this so different to seeing a huge reaction in an autistic person to a threat to another human need (say predictability)? Because our society is built on extrinsic (external) motivation. The entire set up is designed to try and get us to do things by compromising our autonomy. This is why rewards, generic praise, punishments, threats, reminders, plans and prompts do more harm than good. We need to do it for ourselves. We ned to choose. We need to do it the way we want to do it and scrap societies rules (unless they make internal sense to us). We pervasively need to be driven by our own autonomy or we are not motivated. If someone threatens our autonomy, we will perceive that as life threatening.
PDA to me, is a Pervasive Drive for Autonomy, that does indeed produce a pathological avoidance of demands.
More to come
To understand this more deeply, you need to understand the complexities of the science of human needs psychology, and understand how this is impacted in neurodivergences. It is also worth noting that recent research shows that in some cases, the connection between the motivation system in the brain and the threat system can sometimes be wired in such a way that produces a sort of feedback where motivation itself causes a fear response. This needs further investigation.
Written by Emily Wilding Fackrell