Why anxiety isn’t the cause of demand avoidance


Why anxiety isn’t the cause of PDA demand avoidance in PDAers

The thing which makes PDA so different from all the other types of anxiety related disabilities is the root cause of demand avoidance in PDA. For years PDA was seen as an anxiety led need for control, with the cause of demand avoidance being anxiety. While there isn’t scientific evidence proving that anxiety isn’t the root cause of demand avoidance in PDA there are many points which show this to be true. I’ll list the points later as first it’s important to distinguish between PDA demand avoidance and ‘normal’ demand avoidance.

The difference between PDA demand avoidance and ‘normal’ demand avoidance

Every human on the planet will experience demand avoidance at some point in their lives. Some experience extreme demand avoidance for a myriad of reasons while others rarely experience any demand avoidance. Neurology plays an important part in the level and type of demand avoidance a person experiences, Autism for example often leads to avoidance of social demands due to difficulty relating to non-autistic people and being pushed away by others. Sensory processing as another example can easily lead to demand avoidance because some demands may contain sensory input which causes discomfort or pain which the individual will wish to avoid.

The many different reasons for demand avoidance range from neurological differences, sensory issues, learning disabilities, anxiety, intolerance of uncertainty, depression, physical disabilities, and many other types of disabilities and mental health issues to abuse, ostracization, bullying, peer pressure, too many high expectations, embarrassment, socio-economic differences, exclusionism, loneliness, etc.

Imagine a child refusing to go to school, they hide in bed refusing to get dressed because they don’t want to go to school. What’s the cause of this? Anxiety? OCD? Poorness? Bullying? They didn’t do their homework? PDA? They have no friends? Their timetable has changed? They said ‘mummy’ to a teacher the day before? Undiagnosed dyslexia making school work difficult? The lights are too bright and hurt their eyes? They went to bed too late and are too tired to get up? Their legs physically hurt and they have PE today? They struggle to hear what the teacher says and today they have the mean teacher who shouts when they don’t understand what they’re supposed to be doing?

There are so many reasons why a person avoids doing something. Adults have a bad habit of trying to figure out the cause of a child’s difficulty by looking at their behaviour and using their own experiences and interpretation of the world to figure out what is going on. This can lead to misunderstanding what is actually happening, especially when the child in question is unable to express their difficulties too. Adults have spent a long time trying to figure out the cause of demand avoidance in PDA, since anxiety is so prevalent in PDA and for many anxiety is the cause of avoidance then it makes sense they would see PDA demand avoidance as being caused by anxiety.

PDAers experience all of the other issues that other humans experience and so will have demand avoidance for all the same reasons that other people have, but this is on top of PDA demand avoidance. So a PDA child will have PDA demand avoidance but they can also have social anxiety leading to demand avoidance just like other Autistics, they can have sensory issues which cause demand avoidance just like other kids with sensory issues, they can experience anxiety from change or from negative past experiences or from uncertainty just like everyone else. They can also have OCD, bipolar, dyslexia, EDS, depression etc, etc just like everyone else.

The difference between all these avoidance issues and PDA avoidance is the cause. PDA demand avoidance isn’t caused by anxiety, rather, anxiety is a symptom of demand avoidance. For PDA, demand avoidance comes from the part of the brain which recognises what is dangerous and what is safe. For PDAers this part of the brain is overactive and sees everything as a danger even when logically the PDAer knows they are safe. There’s no trigger to this, the brain simply puts out an alarm every time the PDAer tries to do anything that says ‘we’re doing something dangerous, stop now!’, so the body responds by avoiding whatever it is the PDAer was trying to do. Regardless if that thing is actually dangerous or a completely safe, fun activity.

So for example, if a ‘normal’ child were to stand at the edge of a cliff and think about jumping off their brains would say ‘danger, don’t do it!’, if they were to then back away and join a picnic where their mother offered them a sandwich their brain would say ‘that’s safe, lets eat!’. Put a PDA child in the same situation and the brain would say ‘danger, back away!’ when they are near the cliff but the brain would also say ‘danger, don’t eat!’ when offered the sandwich.

Now if the same two children were standing on the edge of a cliff and their mother shouted ‘come away from their. it’s dangerous’ the ‘normal’ child’s brain would say ‘danger, back away!’ but the PDA child’s brain would say ‘danger, don’t listen to her, move closer’. When at the picnic if the mother told the child not to eat a sandwich the ‘normal’ child’s brain would say ‘danger, she said not to eat it so it must be dangerous’ whereas the PDAer’s brain would say ‘danger, she said not to eat it so you must eat it’.

Of course not everyone listens to the ‘danger!’ part of their brain, hence the ‘normal’ child might eat the sandwich even when told not to and the PDA child might comply. There are many other factors to take into consideration here like environmental factors, past experience, upbringing, ect. But basically that’s how the PDA brain functions compared to the ‘normal’ brain.

It doesn’t matter if the demand which the PDAer is avoiding is fun or uncomfortable, whether they’ve done it before or not, whether they like it or not, whether they want to do it or not, the brain will have the same reaction, because the PDA brain cannot differentiate between ‘safe’ and ‘danger’ so it thinks everything the PDA tries to do is dangerous (better to be safe than sorry right?).

How do we know PDA demand avoidance is not caused by anxiety?

Like I said, there is no scientific proof backing this theory (yet). There has been very little in the way of studies into PDA overall. The most recent research in this area was to see if intolerance of uncertainty is the root cause of PDA. We are hoping one day that someone will do a complete study to see if the root cause of PDA is a dysfunction in the brain, many of us are hoping for brain scans (fingers crossed). But until then we can only go off what us PDAers and parents of PDAers have discovered through observations (and let’s face it, who knows more about PDA than PDAers who have spent years researching, observing and learning about PDA?)

With this in mind, here are the reasons why we think PDA demand avoidance isn’t rooted in anxiety:

  • There are many times when PDAers have expressed a lack of anxiety around avoidance of a demand
  • Anxiety meds only work to a certain degree, and for some they actually increase demand avoidance. Surely if anxiety was the cause then removing anxiety would make it easier to manage demands?
  • Some demands are tasks that the PDAer has been completing fine for years and it all of a sudden became a demand to avoid with no noticeable trigger
  • If anxiety were the cause, then wouldn’t telling a PDA child not to do the task you want them to do result in them avoiding it just the same as if you told them to do it?
  • Saying to yourself (as a PDAer) that you aren’t going to do something wouldn’t make it easier to do it if there was anxiety around doing it
  • Would you hear this phrase is anxiety were the cause “I was going to do it but now that you’ve told me I have to do it I can’t do it anymore!”
  • It’s unlikely if anxiety were the case that there would be days when it’s easy for PDAers to complete a demand and days where they cannot complete the same demand at all.

Of course we must remember that anxiety can be different for everyone and that PDAers suffer from anxiety in the same way as everyone else. It can be difficult to work out which avoidance is caused by PDA demand avoidance and which is caused by an actual trigger such as anxiety, mental health issue, environmental issue, other disability or common life struggles. It doesnt help to presume all avoidance from a PDAer is caused by PDA demand avoidance because that may cause a very real issue to be ignored which could grow worse if left unattended.

20 thoughts on “Why anxiety isn’t the cause of demand avoidance”

  1. Wow, I’m learning so much but it’s so complicated as I always thought anxiety was the root. Really helpful post, thanks. I’m also looking forward to the day when they can learn more from brain scans, will be so interesting to learn more. Also for diagnosis in the future.

  2. Well done for getting all that down Riko. I agree with you. It is a maze and there is most defiantly a hard wire for pda My article about anxiety being a symptom also looks at this idea.I also like Harrys recent film where he sees anxiety as a call from the heart/ soul to find inner peace. More reason to keep fighting for pda awareness and studies from professionals to try and uncover the intricacies of the brain. x Well done. x

  3. My grandaughter is 13 and can’t manage school, she could have PDA, she won’t engage with CAMHS, LA have sent an OT to support her in education, however she’s not engaging, she’s just not wanting to discuss school other than home schooled. She is a LAC , I am also her foster cater. Any advice much appreciated.

    1. Is it possible to homeschool? I know many kids do better in that environment although it’s not always an option. Sadly most professionals don’t recognise PDA so they might not be understanding of the difficulties involved but I feel we should still try. Is it possible to explain PDA to the people who are working with her? I don’t understand why CAHMS always refuse to help people who ‘won’t engage’, surely that shows the individual needs more help :/ Have you spoken to your granddaughter about her maybe having PDA? Many find it easier to manage their own difficulties when they understand better what they are, although many also deny any difficulties so presenting the information in as non-demandy way as possible is key (leaving information out for her to find for example). If she has to stay in school then is it possible to give the school information on PDA? There are resources on the PDA Society website for schools. If the school is willing they could remove most demands and just let her do whatever she wants in school (within reason) and eventually she should start to take part herself. If this is possible then the school must ensure not to comment on anything she does regardless of whether it is positive or negative as this can set her back/make things worse.

  4. Shoot me now but I do disagree. You have said the brain’s danger alert might be the cause, but the danger alert is what’s behind the anxiety reaction. The brain being overactive in response means an anxiety response is instigated when it doesn’t need to be. No-one’s saying PDAers don’t have their own opinions and also have other reasons to avoid things that don’t necessarily relate to their PDA. You have also confused the oppositional component of PDA as a reason to show it’s not anxiety. As parent to 2 PDAers I can see clearly that they have anxiety reactions when they refuse everyday things and the oppositionality is in addition to that, like the brain has a block about complying. The post is written from the beginning as if it’s outdated in general opinion that anxiety is behind the demand avoidance (“For years PDA was seen as an anxiety led need for control, with the cause of demand avoidance being anxiety.”) but all the up-to-date research and sources of information still state it’s anxiety-driven and I do agree with them. Don’t forget as an autistic, you might not have deep self-insight (many autistics have alexithymia) and therefore you might not be able to understand your driving reasons fully. You might sometimes know you are refusing/avoiding doing something but not know why, just that you are. Not saying that’s all the time, but it can happen. It even happens on occasion to NTs.

    1. Hi, It is just a theory and like all theories needs proving or disproving. I do feel that anxiety isn’t always present during demand avoidance and that there is no other reason for the demand avoidance that I can identify. I do have alexithymia but from discussions with other PDAers I have found my experience to be similar even with those who don’t have alexithymia. I have managed to reduce my anxiety so much that there are now times when I feel I have to do something and I just cannot bring myself to do it even though it’s something I really want to do, there doesn’t appear to be any reason why I can’t do it other than my brain is just refusing. I would say that opposition can be a coping mechanism for demand avoidance and anxiety, my brain seems to have an instant oppositional reaction to most things. I think I wrote it that way because I tend to live in the moment so for me last year is a long time ago and so that must have come across in my writing :/

      1. If you don’t want to do something maybe it’s a motivational problem. Have you looked into ADHD? And you don’t need to be hyperactive to have it.

      2. I doubt it’s motivational, when I’m really excited to start something and know exactly what I want to do and how I still can’t seem to make myself do it. I’ve looked into ADHD but the issues which seem to fit there are explained by health problems instead, so that’s been ruled out.

    2. I completely agree. Also when they say if a PDA can do one task one day and not the next is an indicator it’s not anxiety I strongly disagree to. Anxiety fluctuates. I have OCD on top of PDA and it’s not always a problem from day to day. Also someone with flight anxiety will be better at flying on some days and not others.
      ‘Danger’ and ‘uncertainty’ are just other ways of saying anxiety. I’ve known since I was a child that I was terrified of doing what was asked if me. Hell, this whole article gives me anxiety.
      When anxiety doesn’t exist and someone refuses to do tasks it is closer to ODD than PDA.

    3. Ej you see a child’s pov. They trust you as their mom, so they keep going until they are anxious then show it. I don’t have Alexithymia. I do have PDA and I don’t feel anxiety first( unless i have missed the trigger-demand). I feel a solid refusal that as an adult I can somtimes even see. I was doing a drink awarness course at work once and part of it was to respond to statements, we had all been answering them the same and I just had to answer and justify a different response to the next question because I couldn’t answer the same as everyone else anymore. I felt no anxiety and I even knew why i was doing it. I didn’t know about PDA at that time. Now I would say I triggered and couldn’t go with the flow anymore, but I had no panic, no anxiety. I would have if i had answered correctly but it was too strong a need to not just do as i was expected to do.

    4. Hi dragonriko
      If, for example, a child with PDA refuses to help unload the dishwasher or to do their homework, what danger is the brain perceiving? Can you describe the feeling the child is experiencing in that moment. Thanks

      1. I can’t say how others may feel but for me it varies depending on the situation, often I’ll just be unable to do it, like my body has frozen and it only unfreezes if I stop trying to make myself do stuff. Other times I get a panicky feeling or a feeling of dread, sometimes I’ll feel lost or scared, especially if it’s something I haven’t done before or it’s in a new environment or I’m unsure what exactly I’m supposed to be doing. The more pressure others put on my the worse it feels, as if they’re asking me to do something impossible or immoral.

  5. This is so interesting. Yes, exactly. The anxiety I feel is not from the request, but from the avoidance. It’s like I know, I have always known, that I’m saying “no” to something for pathological reasons. I know it’s unreasonable. (“No, I don’t want to watch that movie that I’ve been looking forward to forever that you just offered to watch with me, wife. I can’t explain why. I want to watch it, but my brain won’t let me watch it unless it’s my idea. Sometimes it’s even easier if you actively don’t want to watch it, because then you’re making a counterdemand that I can avoid.”, etc).

    But the anxiety still shows up. It comes later. “How much longer can I avoid doing this reasonable thing? Why am I even avoiding it? I’m making my wife’s life so hard.” or “Gosh, any day now at work they’re going to check to see that I’ve not done nearly as much as I was supposed to, even if I am confident I can have it all done by deadline. I hope I don’t get fired.”

    But the avoidance isn’t anxious exactly, as best as I can figure it out for me it’s about never finding myself in an unbounded situation. Once I give over control (“yes ok let’s do this thing you speak of”) I know from experience I will be held to that agreement long past whatever thing I thought I agreed to is over, etc.

  6. I think you have to differentiate between the anxiety caused by the ‘danger alert’ reaction to getting the demand and the anxiety alert caused by the actual demand/situation itself. I think you mean the latter is generally thought to be the case but you think it is more the first, right?

    Demand: Do shopping in this busy shop.

    The anxiety can be caused by just getting the demand. I must do something, oh no, anxiety.
    The anxiety can be caused by thinking about what the demand actually is, so what you have to do, shopping in a buys shop, oh no, anxiety.

    just my two cents.

    Rody (father from a 10 year old girl with pda)

    1. The demand itself doesn’t always cause anxiety, rather the anxiety is from external reactions and internal emotional responses. This then affects future demands and causes anxiety to arise upon recognising a demand.
      So it goes: demand – reactions from self and others – anxiety towards demand – repeat of demand – instant anxiety.
      It’s hard to explain in written format. But, imagine if there was a demand and there was no reaction externally nor internally to it, the person just avoided the demand with no notice from anyone, then the next time the demand presents itself there will be no anxiety again.
      It’s harder to notice when this happens because it’s usually only when demand avoidance is obvious that people see a problem, most of the demands that don’t trigger anxiety are ones that people don’t notice as demands because they’ve been allowed to be avoided without being noticed. It’s only once the demands are noticed and pressure put on to not avoid it that people see it as an issue.
      This is how PDA strategies work, by removing the pressure and allowing demands to be avoided it reduces the anxiety making it easier to manage. The anxiety might completely vanish but the demand avoidance is still present, it just doesn’t cause as much of an issue anymore.

      1. Dragonriko this is PDA for me. Now i know that the anxiety is from the pressure i feel so much more alive! I can find ways of reducing and understanding pressures. Now its a case of undoing the old pressures which is a demand. I wonder if dog’s wish they could stop chasing their tail?

  7. “For PDAers this part of the brain is overactive and sees everything as a danger even when logically the PDAer knows they are safe.”

    I recognise this in my 16 year old. To him the world is volatile and dangerous, but he is able to laugh at this thinking too because he knows that really he’s fine. He is very intolerant of uncertainty. He never ever wants to feel bad or make someone else feel bad. He never wants to talk to a stranger just in case he offends them and something awful happens, he won’t pour a drink for himself because he might spill it (and that’s a terrible thing in his book), he cannot be home alone or go out alone… in his words “I could cause a quagmire, anything could happen”. His risk aversion and anxiety is paralysing him.
    Considering the teenage brain is usually prone to risk taking behaviour (or rather apparently they are more likely to take a chance when the risks are unclear) I would absolutely love it if, as you say, they undertook brain scans. I am very curious as to how this looks at that level.

    I absolutely understand his logic, he’s an articulate boy and has explained it so well to me. For example he’s refused medication for anxiety because he believes it will impair his judgement and make him take what he perceives as risks.
    He finds the idea of optimism bias baffling, the way many people go about their lives ignoring that bad things could happen, because if we didn’t we wouldn’t be able to have money, food, a home, friends…
    Then we end up on some discussion about the statistical likelihood of things happening and we somehow end up on to quantum physics! His avoidance tactics are actually a joy, usually very funny, and more interesting a conversation than I have with most people. He says he is prepared to miss out on all the good experiences in life if it means nothing bad happens.
    But he’s also aware that by keeping his present self comfortable by avoiding things and unpredictable situations he is making his future self uncomfortable as his life will be hard if he is still not independent.
    Interestingly we have discussed him not avoiding, and trying to push through the uncomfortableness… he said that if he goes to the shop on his own (and we are way off him being able to do that) and everything is fine, and it’s fine the next time, and the next time, that he could be lulled into a false sense of security. Which he doesn’t want.

    1. He sounds like a great person to be around. I find it hard to understand as I’m almost pathological in my independence. I like making desisions and going down a road I’ve never been down before. I also have in the past worried if using a pedestrian crossing has ment I have put a car in the way of harm by stopping them. I had to grow out of it, Its not my job to care about every person on this planet. Its my job to care about me just a little bit more. Thats not selfish or mean. I can’t be part of humanity in my bedroom. It’s a very difficult part of PDA as I have found it difficult to hold down a job, unemployment is a tough place to be PDA.
      I have seen the idea online that Autism is an evolutionary step in humans and I think I agree, we tend to be less tribal and more open to human suffering. This leads us to a better ability to fix things. Its our job to find a small thing we can change and give it our best shot. I haven’t figured out how to practice this yet. One step at a time.

Leave a Reply to dragonriko Cancel reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s