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

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.

 

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Promises, Promises

Here’s a little scenario that happened in our house this week:

Me: It’s bedtime, Little Bear

LB: Aw, can’t I have a bath?

Me: I think we’ve left it a bit late for a bath – you’ve been busy eating your pudding, haven’t you?

LB: Yeah, but I reaaallly want a bath (Hangs off me, bats his big brown eyes at me, pulls his best super cute puppy dog face)

Me: I’m just a bit worried that because it’s late, you’ll find it hard to get out the bath when I ask you to…

LB: I won’t! I PROMISE. I’ll get out straightaway, when you ask me.

Me: Are you sure?

LB: Yes, I PROMISE. Straightaway.

Me: Hmm. Ok then, as long as you’re sure you can do that…

Did he get out the bath, folks, when I asked him to? No. No, he did not. He went under the water to pretend he couldn’t hear me. I gave a countdown (‘we’ll need to get out in 5’ etc.), I reminded him of his promise just before the moment it would be needed, just in case he’d conveniently forgotten. So, he could hear me and he hadn’t forgotten, yet neither did he exit the bath. Once I’d let all the water out and he finally decided he was out of options, he did get out and began calling me names/ telling me he hated me and that I was making him annoyed. It was all rather ironic really, given I had stretched his bedtime for him, made a concession for him and he had reneged on his promise. I mean, yeah, he was totally justified in getting annoyed with me (can you hear me rolling my eyes?!).

Anyway, more fool me, because I should know by now that Little Bear can’t keep his promises. I’ve been pondering on this since and have had a few chats on Twitter about it, as I do (it’s such a good barometer of what is adoption shenanigans and what is just plain shenanigans). There are two things in my mind: why can’t he keep promises and why do I keep giving him the chance to make them in the first place?

My immediate thought about why he can’t stick to them is because at the point of making them, he is fully present and intent on doing what he says he will (I don’t believe he ever sets out to purposefully dupe me) but as he struggles with regulation, when it comes to the point of following through, he isn’t able to control himself enough yet to do so. I imagine there are times he knows he’s letting himself down but can’t help but do it anyway.

Then there is the theory that perhaps it’s an act of self-sabotage. Perhaps he doesn’t feel he deserves a nice bath or a peaceful bedtime and kind of deliberately puts a spanner in the works. This is a sad state of affairs if it’s true. I have tried wondering aloud along similar lines but I can’t tell whether it resonates or not – I suspect it doesn’t because he usually gets quite tearful if we get our wondering right and he certainly wasn’t tearful on this occasion – just combative.

I suppose another theory is that it could be an anxiety-based behaviour. Perhaps the end of the bath triggers something in his mind about the beginning of bedtime and the fact that sleep is soon and sometimes he has bad dreams. Perhaps he is attempting to stave that off by causing an escalation.

Another feeling of mine is that sometimes Little Bear remembers a situation similar to the one he is in and recalls a situation or behaviour that has happened before and for whatever reason is moved to recreate it. We’d certainly had a similarly difficult bath time a week or so before and the following evening from the incident described above also featured a sudden switching and similar behaviour. I can’t really explain why this would happen but there are certainly times when I feel it does.

There could also be an argument for saying that because I had voiced my concern about what could happen in the situation (me trying to be open and honest etc.) I had somehow created a self-fulfilling prophecy. There is certainly a truth in the more Little Bear knows you want him to do something, the less able he seems to do it. He’s pretty oppositional like that.

As if I hadn’t already muddied the waters with enough theories, I have more. Could this behaviour be linked to poor situational understanding/ poor cause and effect? I feel as though I don’t have many of these challenges with Big Bear because it is obvious to him that if he messes me around in this way, I won’t give him similar concessions in the future. However, this type of A + B = C thinking seems challenging for many adopted children. Perhaps Little Bear doesn’t realise he is cutting off his nose to spite his face, as it were? I have started asking him what he thinks might happen if he does such and such, at times. The confounding this is that he is often able to tell me what a logical consequence might be. I can’t tell whether he isn’t bothered so just does the thing anyway or whether there is a disconnect between knowing in theory and changing his behaviour in practise.

A final theory is that demands of any kind make him anxious because they feel as though they are clawing at his need for control (see Control where I’ve written all about that). Someone on Twitter mentioned Pathological Demand Avoidance to me (PDA for short, a sub-diagnosis of Autism) and it is something I’ve turned over in my mind before because Little Bear is undeniably demand avoidant. However, whenever I check out the diagnostic criteria I don’t feel he meets them. There are elements that ring true but I don’t believe Little Bear lies anywhere on the Autistic Spectrum. As with any child who has experienced developmental trauma, I always think it’s essential to consider the impact of that first and foremost. I would love to see a document like the Coventry Grid though, which instead of drawing out the similarities and differences between ASD and attachment, drew out the similarities and differences between PDA and demand avoidance within an attachment/trauma presentation. I think I might e-mail Heather Moran and see what she thinks (why not?).

One of the reasons I don’t feel Little Bear has PDA is because his ability to manage demands fluctuates enormously. Sometimes he can do everything you ask without difficulty. At other times every tiny request is difficult for him. I think a child with true PDA would be much more consistent in their demand avoidance. Little Bear’s behaviour tends to be pretty unpredictable. I know there would be other days when we could have had exactly the same bath time scenario and he would have got out of the bath the second I asked him, like an angel. What is difficult is predicting which days would be like that. If Little Bear is having a day where every demand is a battle, I would never have even considered entering into a promise-based scenario. I would have made sure the rules were really firm and clear and it would have been an early bed.

However, on the particular day in question, everything had been going well. Little Bear had done well at school, eaten his tea, come off his I pad and come upstairs as requested. The stars appeared in alignment so I was sucked in by the promise of a promise. The switch from co-operative to oppositional happened in a nano-second. I have to say that I find this type of scenario difficult. Because I don’t see it coming and because I have already given ground, it is extremely difficult not to feel taken advantage of and really rather annoyed. I coped much better the second night when I was able to anticipate the behaviour I might be confronted with in advance.

So why do I do it? Why do I allow him to get into a making promises situation if I know he might not be able to stick to it? I’ve asked myself this question a lot. Part of it is because I find myself keeping the rules much stricter for Little Bear than for Big Bear and that can feel mean. I let Big Bear stay up late sometimes or negotiate on what order he’s going to do certain tasks in because he has proved over and over that I can trust him to do that. I’d be quick to reign things back in again if I thought he was exploiting me but I have very little need to. However, because Little Bear has more difficulty sticking to promises and has reneged on many, I am less inclined in the first place to give him a chance. I suspect that is with good reason and that with firm, immovable boundaries and rules, he feels safer and happier. I also don’t like putting him in situations with a high risk of failure because in general, that doesn’t do anything helpful for his self-esteem.

There is something about me not trusting him to have a go though: I don’t want him to think I don’t trust him and don’t believe he’s capable of keeping promises. I know that he can (given the right set of circumstances) and I would like him to have a go from time to time and feel successful at it because otherwise he will surely grow up thinking he is a person who can’t stick to their word. He certainly finds it harder, given the myriad possible reasons I’ve cited above, but I don’t believe it’s impossible, and like anything else, I’m sure he’ll get there in the end.

 

 

*Also, how complicated is this adoptive parenting lark? One tiny scenario, a gazillion possible explanations. Maybe he just didn’t feel like getting out the bath?