A note on demand avoidance

Demand avoidance is what gives Pathological Demand Avoidance its name because it’s considered to be so central to the difficulties experienced by a person with the condition. A person with PDA will obsessively resist and avoid the ordinary demands of other people and everyday life. [Masking can confuse things though, and make it appear that someone can co-operate just fine in a particular social setting (including around some family members) but this causes its own set of difficulties when away from the setting].

We initially thought that Little Miss M’s demand avoidance was just a sign of her very strong will and mind of her own, which we totally respected and embraced. As a very small child she would do the opposite of what we asked, she’d resist normal daily tasks like nappy changes, getting dressed, refusing to open her mouth to eat a meal and brush teeth, resisting sleep in every way possible and wouldn’t play games or read books we suggested.

When she could talk she’d start saying no to everything we said and would kick and scream when we tried to get her to do something. Everything we wanted her to do was such a struggle to achieve and she’d always end up in tears. Then with better language skills came excuses and distractions to manipulate the situation to her advantage. She became a master negotiator but rarely did what she’d say she’d do which would result in the struggle just being delayed.

As she got older, anger started to become an issue when she couldn’t have her own way and she’d hit or throw things and slam doors. She’d moved on to ignoring us too when we spoke to her. More avoidance strategies emerged like being an imaginary character who either couldn’t do or didn’t have to do the thing we asked, changing the subject in such a way you have to go along with it (asking questions about very complex or sensitive things which you feel you must address there and then) and many, many more.

It became clear to us that this was more than a strong will, Little Miss M needed to feel in control to an extreme degree due to the lengths she’d go to, to do things her own way and not co-operate with us and how upset she’s get if we’d insist. It became obvious that not having control caused huge difficulties for her. But why?

PDA is best understood as an anxiety-driven need to be in control and avoid the demands and expectations of people and everyday life. This anxiety-driven need to be in control means that Little Miss M’s brain perceives there to be a very real threat of danger when she’s not in control and her fear and anxiety levels increase to an incredibly high degree. Her survival instincts take over and drive her to do all she can to protect herself from this perceived threat. This accounts for many aspects of PDA including why demand avoidance is triggered when she’s faced with the demands and expectations of other people and everyday life.

Demands are all the things she feels she MUST do or must do in a particular way. It’s this feeling of having to do something which puts it out of her control and everything has the potential to do this, even her own ideas can sometimes become a demand because the pressure to do them becomes an expectation she must meet. Pleasant things like being offered an ice cream or a fun game to play can even become unpleasant when it feels like a demand because they aren’t within her control. Everything has the potential to feel like a demand when it comes from someone else or when there’s a set time to do it or a time limit attached, when there’s an expectation to do it, when it interferes with what she wants to do, when there are instructions to follow and many other complicated reasons which aren’t always clear. Her ability to tolerate demands changes all the time too, making her reactions difficult to predict.

What is clear though is what demand avoidance looks like so whenever we see this challenging behaviour in Little Miss M, we know she’s experiencing anxiety and it’s a cue to us that she needs support to feel more control. Demand avoidance can take many shapes nowadays including all the things we mentioned she did when she was younger. What she will do to avoid a demand depends on how much control she feels she has lost and what her overall anxiety levels are at the time. If she is resisting, taking charge or becoming distressed and upset or angry and aggressive though, we know the situation is out of her control and causing her anxiety.

So how do we manage this?

With tons of love, patience, flexibility and respect for her needs and dealing with everything on a moment by moment basis because her anxiety levels fluctuate all the time. We remember it’s a hidden disability and that it’s her behaviour which makes it visible.

We ensure our lifestyle and her education allows her to have a lot of autonomy and we’ve removed as many unnecessary demands as possible so she isn’t constantly bombarded with demands and overloaded with anxiety. This makes life easier and happier for her and gives her more opportunities to accomplish and achieve more because she’s in a better state of mind. We are especially relaxed about her biggest triggers (bedtime and food), allowing her a lot of control and choice in these areas so she feels more in control of them and views them as less of a demand and we go with her flow and what she is up to doing as often as possible so she feels as in control of the days as possible.

For demands which are necessary, we’ve established helpful strategies to try and help distract her from the feeling of danger. They only have a chance of working if her overall anxiety is low, so the autonomy and reduced demands above have impacting on the frequency of these working. Presenting a potential demand in a way that gives her control and/or with humour, silliness and in a way that appeals to her (usually imaginary play and being characters she loves or using her special interests) can sometimes distract her brain from the fear response and help her to overcome demand avoidance.

She’ll always need an element of control over how something is done for this to work, otherwise she will do all she can to avoid the demand and regain control so we don’t worry so much about how something is done, just that it’s done with the least amount of anxiety possible. We think of this as an opportunity to work with her to figure out a way to overcome a difficult situation. We listen to her, empower her with a say in how something could be done and support her with doing that so she feels safe and in control. This can make some things more achievable but not all.

If demand avoidance is triggered, for whatever reason, we first and foremost always remember she cannot help doing it. It’s not a choice to react this way or a learnt behaviour; she has no control over it. It’s her brain reacting to what it perceives as danger and anything she does is a reflection of her fear of that very real feeling of threat, no matter how irrational it may appear to us. We don’t take it personally and try to remain calm while acknowledging her feelings.

Once we’re in her shoes and can see the situation through her eyes and appreciate how her anxiety feels, we assess whether or not another distraction will work. Most of the time, this means trying it but if her reaction to the demand is indicating very high anxiety levels, we know distraction will be ineffective and only serve to increase her anxiety further. We have to be very creative with distractions, quickly thinking of something which appeals to her or makes her stop and laugh to defuse her anxiety and shift her attention away from the fear of danger for long enough to be able to involve her in how we can achieve the task in hand. This is ideal because it’s giving her some control over the situation again by allowing her to be in control of how she does it. Flexibility and patience is key here.

If distractions don’t or won’t work and it’s not essential to carry out the demand straight away, we won’t push it but also try not to set another time for doing it because this is usually agreed to at the time but inevitably never happens because the expectation to do it at a set time becomes an even bigger demand. We do make it clear we won’t do it now though so she knows the threat has gone away and her anxiety can start to reduce. Then we try to re-visit it at a later time when her anxiety allows. We are flexible though and if her anxiety doesn’t allow for it, and it’s not necessary for today, it will wait for another day. If it is essential for that day, we continue to be calm and patient, doing whatever we can to help her anxiety reduce so we can achieve it when anxiety allows.

Understanding Little Miss M’s demand avoidance and her anxiety has made us re-evaluate what things really are necessary and how important it is they are done in a particular way. Things we would have thought essential before are no longer as vital in our thinking now, not when we realised how much anxiety and distress they can cause if pushed at the wrong time. Having a bath on a high anxiety day isn’t essential, nor is changing out of pyjamas. Her doing certain things herself isn’t essential every day and we know she’ll do them when she can. A biscuit or snack just before bed or in bed to reduce anxiety is OK as is falling asleep later if needed. Brushing her teeth on the sofa while watching TV is better than not brushing them at all and some days not brushing teeth at all is better than a meltdown…

It’s a journey though and none of this happened over-night. We still don’t always get it right and don’t always know what to do because nurturing a child through PDA is a challenge; everything takes careful consideration and thought and it can be exhausting and time consuming to achieve the simplest of things. Demand avoidance isn’t the only difficulty arising from the anxiety-driven need to be in control either and those additional difficulties are just as challenging and in some cases more challenging and take huge amounts of stamina, patience, understanding and flexibility to support and nurture. But we do our best and with each challenge we learn a little more to help us all to grow.