Demand Avoidance

I have been pondering this blog for a while and, ironically, avoiding it. There are a few reasons why: it requires research which takes time; I may have had more than my fill, of late, of demand avoidance and I’m not sure how kind it is to myself to spend even more time thinking and writing about it. But hey ho, here I am writing about it because there’s no time like the present and it will, at least, feel current and relevant.

I thought this would end up as a compare and contrast between PDA – Pathological Demand Avoidance – and demand avoidance as part of an attachment profile and potentially some mention of ODD (Oppositional Defiance Disorder), with me arguing that although Little Bear is pretty demand avoidant, I don’t believe he has PDA. However, after reviewing the literature, I feel comfortable to say that PDA and demand avoidance with a trauma history are different conditions and I do think this is acknowledged by some knowledgeable professionals, even if not widely (See this piece of research PDA and differential diagnosis ). I should point out that PDA is not officially recognised as a condition in the DSM or ICD diagnostic manuals but there is a growing belief that it does accurately describe the needs of a specific group of individuals (See PDA Society for more info).

Assuming it does exist, I think what would be really useful would be a Coventry Grid type document (comes up on Google if you are interested)  that drew out the differences between demand avoidance in PDA versus demand avoidance in a trauma background. The difficulty is that this is extremely difficult to draw out. One key factors seem to be the case history – are there trauma/neglect/attachment issues in a child’s background or not? Parents of children who match the diagnosis of PDA are rightly worried about it being branded an attachment disorder because there is a direct insinuation that they have neglected or abused their children. I can see how this could be problematic. However, I do think that where there is identified trauma in a child’s background, such as in Little Bear’s, this should immediately bring into question a diagnosis of PDA. Similarly, I would also say that trauma in a child’s background should bring into question an Autism diagnosis. I’m not saying that an adopted child couldn’t have PDA or Autism: a small percentage could. However, I am saying that where there is trauma in a child’s background, the impact of this should be considered first and foremost.

The second key factor appears to be whether a child who is demand avoidant matches the criteria for Autism. If they do, they are more likely to fit the PDA profile. However, there is also literature out there to contradict this – see Gillberg Research .

I can’t really work out where ODD fits in, because Little Bear appears to fit the profile for that too (ODD is recognised and does have DSM & ICD criteria) but my hunch, again, is that it wouldn’t be right to diagnose him with it.

The group I am interested in are those such as Little Bear, who do not meet the criteria for Autism and do have trauma in their background and are markedly demand avoidant. What is going on with their demand avoidance and how should it best be managed?

A useful place to start seems to be the Extreme Demand Avoidance Questionnaire (EDA-Q) – a questionnaire which has been designed for research purposes and is not diagnostic, but could be useful in picking apart the nature of behaviours we experience. You can find it here: EDA-Q

EDA Questionnaire

I have filled it in for Little Bear. As you can see, he scores 38 points which doesn’t reach the threshold for a PDA diagnosis (the threshold is 50 or over) , though it does say that those scoring lower may still meet the criteria as individuals can be impacted differently. I’m a little unclear as to how this type of decision would be informed. Either way, I don’t think he has PDA, yet he certainly does have a higher than average propensity towards demand avoidance. For context, Big Bear scored 6 on the same questionnaire.

These are the descriptors in which he scored the most highly:

  • Is driven by the need to be in charge
  • If pressurised to do something, s/he may have a ‘meltdown’ (e.g. scream, tantrum, hit or kick).
  • Has difficulty complying with demands unless they are carefully presented.
  • Has bouts of extreme emotional responses to small events (e.g. crying/giggling, becoming furious).

I have previously written about his need for Control which fits in with the first and second point. In reference to the third bullet point, sometimes demands that are made in a reverse psychology kind of way (‘I bet you can’t do x or y’ or ‘I really hope you aren’t going to eat my apple’), or a challenge kind of way (‘I’ll time you to do x’) go better than a straight forward ‘do it, or else’ kind of way. The fact that I have thought of alternative ways to phrase demands suggests this is something we have to do quite often. In reference to the fourth point, at the moment, something as small as asking Little Bear to go to the toilet and then, God forbid, actually wash his hands afterwards, is enough to unleash fury.

It is also interesting which statements he didn’t score on. I am assuming that in order to gain a high enough score to meet diagnostic levels for PDA, a child would generally score highly across all descriptors. Could it be the areas where children without PDA don’t score that are important diagnostic indicators for differential diagnosis?

Little Bear didn’t score on the following:

  • Finds everyday pressures (e.g. having to go on a school trip/ visit dentist) intolerably stressful.
  • Takes on roles or characters (from TV/real life) and ‘acts them out’.
  • Makes an effort to maintain his/her reputation with peers.
  • Prefers to interact with others in an adopted role, or communicate through props/toys.
  • S/he was passive and difficult to engage as an infant.

I’m not sure if it’s just the examples used in the point about finding everyday pressures intolerable, but Little Bear loves a school trip and his behaviour was exemplary the last time we went to the dentist so I’ve scored it as zero. I would say that he can find new situations or places anxiety provoking and that might lead to more dyregulation. However, I wouldn’t say that necessarily correlates with greater demand avoidance in those situations. It might, or it might not – I suspect it is more complex than just where we are at the time.

If the descriptor were to mean every day, seemingly inconsequential demands, such as eating, toileting or getting dressed, I would have scored it much higher.

The bits about taking on a role or communicating through props don’t resonate here. Little Bear has good imaginative skills and sometimes there are difficulties separating Fantasy versus Reality but I wouldn’t say he uses them as a means of communication or specifically to avoid demands. I think this is where social mimicry as part of an Autism diagnosis comes into play.

In terms of how Little Bear presents himself to his peers, he certainly doesn’t try to comply with them but not us. I would say he takes a blanket approach to demand avoidance and if anything, there is a slight bias towards doing what familiar adults say. The less attached he is to a person, the less likely he is to co-operate with them, be they child or adult.

In all honesty, I don’t know if he was passive as an infant, as we didn’t know him then, but I cannot for one minute believe that he was!

The other items on the questionnaire that I have scored as ‘somewhat true’ or ‘mostly true’ are mainly not scored more highly because the behaviours come and go or because they used to be a problem but we have seen improvements. I have read that children with PDA can fluctuate in their demand avoidance – becoming much more co-operative when they are comfortable and relaxed. I would say this is true for Little Bear too. If he’s struggling in general, the demand avoidance will be much more pronounced. It is to the point where we have had months of co-operation – where I could just say, “Please put your shoes on”, as I would to any other child and Little Bear would do it with a smile – and then times like we are currently experiencing where every tiny request feels like a battle and can all too easily lead to escalation.

I have gone on the hunt for information about demand avoidance in developmental trauma to explain why this would happen but it’s thin on the ground. The Beacon House information about trauma does say this:

  • Boundary setting can trigger a big reaction or noncompliance in child (where there are Attachment insecurities)
  • Prolonged meltdowns over small things (as a part of difficulties with Emotional Regulation)
  • Rule breaking at school
  • Unresponsive to day to day requests (often seen as non-compliance) (as a part of Behavioural Dysregulation)

I guess those things sort of add up to the levels of demand avoidance that we see but I’d be really interested in knowing how other children who have experienced developmental trauma score on the EDA-Q and how their scores are distributed across the descriptors. I can’t help feeling we don’t have enough information about this and at the moment and it would be difficult for clinicians to make informed differential diagnoses between PDA or ODD and demand avoidance caused by developmental trauma.

If anyone knows of any other sources of information I’ve missed, please get in touch.

The one thing that I can unequivocally say is that parenting a child with demand avoidance is a little tricky (I’m totally under-egging it) and that finding ways to manage and manage it, has us scratching our heads. I am very much still working on it but here are some things that sometimes work at our house:

  • Know your own triggers. It is very, very difficult to be calm when a child won’t do anything you say. I having to be conscious of the fact that this could cause me to snap and that I need to very deliberately react in a different way. I find this is much easier to do if you plan your response in advance, rather than just reacting when you are taken by surprise.
  • At the moment, the plan which feels most effective is not shouting and moving away from, not towards Little Bear. He needs the space and I am less likely to react negatively a bit further back, busying myself with something else. This more casual approach seems to help things simmer down. Little Bear tried to saw the table with a dinner knife the other day, in a bid to avoid eating his tea, but I barely turned around. I did calmly tell him that it was his choice whether he carried on doing it or not, but if he did, I would take the money from his pocket money to fix it. It wasn’t in a threat way – just a pointing out a logical consequence way to help him with his decision.
  • Self-care. I know people mock the concept but maintaining patience and calm in the face of zero co-operation is exhausting. We must look after ourselves (I’m talking to myself as much as anyone after a friend gave me a stern telling off!)
  • Allow much longer to get ready to go somewhere than you’d think necessary. This allows your small person to spend time avoiding and doing everything but getting ready while you gently steer them through the necessary tasks. Time pressure won’t help anyone.
  • Reduce the demands. There are certain tasks that have to be done but can you help by dressing or feeding or helping in another way? Other tasks, which are not essential, could be omitted for that day.
  • Often it is verbal demands that Little Bear can’t tolerate. Sometimes we manage to acknowledge this in advance of what is likely to be a tricky situation for him e.g. bedtime and are able to collaborate on a solution. We’ve found that things like having all the equipment Little Bear needs for a task laid out for him e.g. toothpaste already on the brush, pyjamas laid on the floor etc. means he can complete the whole routine himself without us needing to make any verbal demands. Visual supports like a tick chart or timetable can also work.
  • As mentioned above, careful wording of a command can help e.g. reverse psychology or a challenge. Unfortunately two good choices no longer works for us, because Little Bear has figured out he can just agree to neither.

 

I should point out that underlying the demand avoidance is likely to be anxiety of some kind – whether it be a fear of losing control or some other internal precipitant – so we should be mindful of this and manage the behaviour as kindly as we can.

I have to be honest and say that I am a little torn over demand avoidant behaviour. Half of me is extremely therapeutic about it and willing to be patient and accommodating. The other half of me thinks that one cannot successfully navigate life never doing what one is asked (employers and the Police certainly aren’t too keen on it) so perhaps there is some mileage in being encouraged to push through the difficulty barrier of wanting to avoid demands. I insisted, the other day, that Little Bear did carry out his reading before he went on an exciting day out. I insisted very quietly and patiently and had been specific on how many pages I expected (hardly any) but such was the strength of his need to avoid the demand that he would have given up his day out just to avoid the reading. We persevered and when he finally did the reading, we were able to praise him and make a big fuss for pushing through something we knew he was finding difficult. He was pleased with himself and had a lovely day out.

Isn’t this how resilience is built? By people believing you can do things you think you can’t and supporting you to achieve them anyway? Life for Little Bear is going to be extremely difficult if he can’t cope with the smallest of demands so I don’t see that lowering our expectations to zero will be of much long term use to him. I suppose, like everything, it’s a fine balance between being therapeutic and building life skills and we continue to hobble along the line.

 

Demand Avoidance

Control

I have to admit that I have been dithering this morning. I knew I needed to blog but it’s dark, rain is pounding the window as though the world is weeping and I feel like getting wrapped in a blanket and hibernating. Part of the problem is that I haven’t been particularly kind to myself with my choice of topic this week. I have decided to write about control and controlling behaviour but it’s quite meaty and I’ve needed to hit the books first. It is always easier to write the kind of post that just flows out of my head but sometimes a topic comes to mind because I don’t understand it enough and because I need to use the blog as an opportunity to learn a bit more. So, mind over matter, here I am, semi-researched and ready to type.

Controlling behaviour is certainly apparent in our house and it always has been, ever since Little Bear arrived. Admittedly, it isn’t as present as it used to be but there are certainly times when it is and it can be pretty tricky to manage. Initially, Little Bear sought control in every interaction. If we said ‘do this’ he said, ‘no’. If we said, ‘don’t do that’, he would say, “I certainly will.” He went further than that. If somebody sat somewhere he didn’t like, he would threaten them until they moved. If we gave him food, he wouldn’t eat it. If we didn’t want him to eat something, he’d eat it. His need for control made him contrary and oppositional in pretty much every interaction.

It can be extremely difficult, when faced with this type of behaviour, not to go head to head with it; not to threaten and shout and vie to be in control yourself. As a parent of a non-traumatised child, we were used to being in charge; to him pretty much always doing what we asked of him so this new world where a three year was attempting to rule the roost was shocking to say the least.

In order to properly explain why he was behaving like this, I’ve done a bit of reading. Bruce Perry (my favourite guru), says, “Because youth who have been through trauma often come from homes in which chaos and unpredictability appear ‘normal’ to them, they may respond with fear to what is actually a calm and safe situation. Attempting to take control of what they believe is the inevitable return of chaos, they appear to “provoke” it in order to make things feel more comfortable and predictable”. This rings true. From what we know of Little Bear’s birth family, life was chaotic. There was little or perhaps sporadic adult supervision. There were older siblings who may or may not have tried to exercise control over the younger ones but in general I suspect everyone ran wild and free. Unfortunately, this pattern continued in foster care, where Little Bear also received little supervision and seemed to spend his days entertaining himself in dangerous and risky ways.

This isn’t okay. However, for Little Bear, it was all he had known. To him, chaos and lack of supervision was normal. When he arrived here, to an environment of constant supervision (we literally didn’t take our eyes off him for the first months because we didn’t know what he might do) things must have seemed totally upside down. I suppose it might have felt smothering and claustrophobic. To him, this was chaos. This was abnormal. It must have felt very unsafe, hence his need to regain control by refusing to comply etc.

This is where things get a little tricky. Obviously, I wouldn’t want my son to feel unsafe at home. However, it isn’t healthy to allow a three year to control everything. That could only lay down the foundations for far larger problems later. As scary as this was for him, Little Bear was going to have to get used to environments where adults are in charge and where demands are made of him because otherwise school and work were going to be impossible. Hopefully, over time, he would learn a new type of safety, where grown-ups, not children, are in charge.

It is hard to pick apart how we succeeded in that because we did a lot of things that tackled a lot of different issues. Sometimes we got it right and sometimes we got it wrong. Vera Fahlberg tells us about how it should work: “The supportive approach to control issues is twofold. First, the adult demonstrates to the child that the child does not lose when he complies with reasonable demands, but instead everyone wins. Second, the adult provides as many opportunities for the child to be autonomous as is appropriate, given the child’s age.”

I think we were lucky that Little Bear could tolerate praise and in fact lapped it up. It meant that we could praise good decision making and co-operation. We were careful to praise every single tiny step of positivity. We didn’t just assume that he should put his shoes on when we asked. If he did co-operate, we made a big fuss (in a good way). If he didn’t co-operate we got pretty practised at ignoring a lot of the less positive behaviour (throwing etc.) and waiting, silently, for him to co-operate. We would always praise the part where he did do what was asked and try not to comment too much on the more negative bits that had happened first. We tried not to feed the control monster.

I can’t, hand on heart, say that we handled all situations as well as this. There certainly were times we went head to head with him and we learned the hard way that it is ineffective, as I suspect most new parents of traumatised children do. I can’t, hand on heart, say that there aren’t still occasions when I just want him to ‘do what he’s bloody asked’ and handle it less than therapeutically. We are human.

A lot of this is about relationships. As time went on and we were still there and we said sorry when we were out of order and we repaired things when it had gone awry and we talked and we wondered, Little Bear’s need for control itself gradually subsided.

Interestingly, Vera (I hope she doesn’t mind first name terms) also says, “Parents who know they can take charge whenever the situation warrants are not threatened when their children make decisions that don’t work out well. If a parent doesn’t know how to take charge when a child is out of control, the young person senses this and becomes frightened.” She goes on, “If the parent continues to be unable or unwilling to control the child in such a situation, the child’s inappropriate behaviours usually escalate.”

From the first day I met Little Bear, as well as being shocked by his behaviour (not mentioned in any paperwork, anywhere), I knew I should never show his behaviour any fear. I had met many families of children with complex needs through my work and many times seen parents so frightened of their children’s behaviour that their lives were ruled by it and it paralysed them from making changes which might ultimately help. From the onset, we reminded ourselves that Little Bear was a small child and we didn’t need to fear him. It did help us to remain calm when he was losing control. There were many times I held him and said, “I’m not going to let you hurt me” when he was lashing out. We did take control when he was losing control. We removed items he was too overstimulated to use. We stayed with him no matter what he did.

Again, I can’t pretend we always handled these situations appropriately. Tiredness, illness, hormones all impact your ability to stay calm no matter what. I know that sometimes it did feel like a battle for control and that Little Bear was trying to push and push to get a reaction because he felt out of control and he needed to check whether we were reliably in charge or not. Dealing with control issues is certainly not easy. I like to think we got it right enough of the time to make a difference.

In general, these days, I’d say we walk a line between encouraging Little Bear to co-operate (with reasonable demands) and giving him the autonomy Vera talks about. Depending on what else is going on, we make adjustments to keep us on the line. For example, if Little Bear is finding life a bit tricky, we reduce the demands we make of him. We might feed him his tea or help him get dressed so that he can manage the rest of the demands of his day.

Giving him autonomy is tricky because he may still exploit it. If we say he is in charge of a task, he would then think he was in charge of that task forever. He might also think that ‘being in charge’ of something means he can speak to people involved in a very bossy way. It can be hard to give him manageable autonomy that doesn’t lead to a spiralling need for more control. It tends to help if we give autonomy with very clear parameters. As an aside, we have always felt it important to put him in challenging situations with a high likelihood of success e.g. helping Grizzly with a job involving power tools or going canoeing or helping with cooking. They are often situations he can’t believe he’s been let into and in which he rises to the challenge. Being able to succeed in these highly supported but risky activities has many benefits, one of which is feeding his need for control safely.

We have noticed that Little Bear’s control issues come to the fore when he is anxious, frequently in the car. He makes irrational demands such as ‘take over that car’ or ‘drive into that field’ or he tries to control the songs we have on or which windows are open. I increasingly wonder whether journeys scare him and throw him back to a place where chaos ruled. I suppose that as a child, being put into a car and taken somewhere is totally beyond your control, especially if that place is a contact centre or a new home. As I write this I think there is more we could do to calm him at these points (visuals of where we are going, though we always tell him verbally, perhaps a task to be in charge of) but I have to admit this is a time we are firmly in charge and don’t tolerate his spiralling demands.

Another big challenge has been getting school – a place that is institutionally controlling – to understand and manage Little Bear’s controlling behaviour appropriately. There have definitely been times when they haven’t listened and they have tried to use a very authoritarian approach which has backfired spectacularly. Earlier this term, I noticed that Little Bear’s behaviour was spiralling at home and school. He was less co-operative and getting him to comply with any requests was becoming a battle ground again. Sometimes, when you’ve had a good period, a period of relative compliance, a change can put you on the back foot and you forget for a while that you have much better strategies up your sleeve than the ones you are reflexively using. Guilty of slipping into traditional parenting ways, I tried to step back and think. Why was Little Bear seeking control left, right and centre again? There was only one logical explanation: he felt out of control somewhere in his life. Coupled with school refusal I could only assume that place was school.

I continued to speak with school but wondered whether there was anything that could be done at home to keep us on the line I talked about. Little Bear’s bedtime routine had become difficult again, with refusal to comply with each part of the now very familiar routine. To try to reduce the demands, I tried a visual timetable. I explained to him that as he finds us asking him to do things difficult, he could be in charge of the tick list and hence the whole of getting ready for bed. In theory, it would be possible for him to do all the stages without me making any verbal demands at all (i.e. autonomously). I should really have anticipated that his need for control is such that he would have to test the parameters of the new system, rather than just using it. So far, he has tried adding more boxes, demanding things that are not on the list, rubbing out all the ticks half way through, using crosses instead, refusing to give the list back and writing on himself with the felt pen. This is a good example of him seeing what the parameters are. Rather than ditching the timetable, I am trying to be very clear about what is and is not part of the timetable process. If he can’t manage to stick within it, I guess it will show me he isn’t ready for this level of autonomy. However, I think he is. The other night, he had a wee, washed his hands, brushed his teeth, put his night things on, added a box which was ‘put clothes in the washing basket’, actioned that box and got his reading book all without me speaking. I was there though – I don’t want him to think he gets less attention for being independent – and gave lots of praise at the end.

Similarly, in the mornings, I used to give out commands, one at a time, until the routine was done. It worked for a while but then we started falling at the final hurdle. We’d get to going out the door and Little Bear would refuse to put his shoes on. I’m not quite sure how it happened, but somehow Little Bear figured out (maybe with some help) that if he just did all the jobs that needed doing, one after the other, I wouldn’t need to ask him to do anything and he would get a longer period of uninterrupted I pad time (“the child does not lose when he complies with reasonable demands, instead everyone wins”). By some miracle he now does that and is fully ready, by 8:10am or so, teeth brushed, shoes on and can go on his iPad for 20 whole minutes without interruption.

At the moment, I make very few verbal demands of Little Bear at home but the expectations are the same. I’m still in charge but he has autonomy in how he meets the expectations. I suspect this could be the key to managing his need for control going forwards.

Right, sorry for that massive thought-vomit. Better out than in as they say. I’m off to ponder managing car journeys…

 

 

Control