LAURA KERBEY ON PDA – Pathological Demand Avoidance

17 Nov

We were delighted to have Laura Kerbey join us at last night’s Parent and Carer Support Group to talk about PDA. This was one of the best attended groups we have had which highlights what an important topic this is.
I took some notes from the meeting for those unable to attend - Tracy

LAURA’S BACKGROUND

Laura gave us a little bit of background on herself; she has a background in teaching in specialist settings and first became interested in PDA when she was trying to find a way to work with a talented autistic student with so much potential but who couldn’t meet any demands placed on her. The usual autistic strategies weren’t working and so Laura did some research and discovered the Pathological Demand Avoidance profile of autism which seemed to fit her student perfectly, and when she adopted a PDA way of working with her student, things improved dramatically. After years in teaching she started her company, P-AST, Positive Assessment, Support and Training. Working with a psychologist, P-AST provides holistic assessments for autism and other neurodivergences. Laura is also a director of KITE which provides EOTAS packages for children who cannot attend school. KITE works with 65+ young people across 14 LAs to provide bespoke education packages for those ‘Educated Other than at School’. Laura says that of those young people, almost all of them have a PDA profile. Laura has also written several books on PDA, some of which will be listed below.

WHAT IS PDA?

Laura talked to us about what PDA was – a profile of autism, but particularly complex, challenging, misunderstood or even ignored by many professionals – frustrating to both the individual with PDA and those trying to support them. We are, she said, miles behind in research on PDA and some LAs/CAMHS don’t agree on what it is or whether to include it in a diagnosis. It is NOT a diagnosis in its own right , a person MUST have an autism diagnosis in order to then have a PDA profile confirmed. It can be difficult to assess because PDA presentations, just like autistic presentations, can be so different.

PDA is essentially ‘A profile of Autism characterised by high anxiety and the need to avoid demands, to remain in control. But as Laura said, there is so much more to it than that. There is of course a lot of anxiety in everyone and it is part of an autistic profile to be demand avoidant. But PDA can often look irrational . Rational fears of hurt, rejection, embarrassment, etc are what we all experience at times and we naturally try to avoid those experiences. A person with PDA, however, might avoid a request to do something simple like ‘Put your shoes on’ or even something they want to do.

Laura talked to us about some of the characteristics of PDA – including charisma and humour. She explained that when regulated, PDAers can be some of the most charismatic, humorous and engaging people she has met. Humour is a really important part of supporting a person with PDA, they love a laugh, especially if it is at your expense, so use it as much as you can. Laura observed that no one should be working in education anyway without a robust sense of humour! PDAers may also have sensory issues that will compound their anxieties.

WHAT IT LOOKS LIKE

People with PDA might flat out resist and avoid the ordinary demands of life like getting up, joining in with a family activity or just general day-to-day activities. They might also employ what Laura called ‘social strategies’ of distraction, excuses, flattery, all of which are very clever ways of avoiding demands but which are also exhausting. Laura gave us several interesting examples of this kind of strategy she has come across when assessing young people. It is important to recognise that PDAers can be sociable on the surface, and want to go to school for example, to enjoy time with friends. But their socialisation can lack depth and it is also exhausting for them. This is another example of where schools might say they are ‘fine’ without realising the needs of those with a PDA profile. People with PDA might also exhibit excessive mood swings and impulsivity – Laura believes there is a strong link between PDA and ADHD which has not yet been explored properly. As a result, if a child presents with a PDA profile, Laura’s company will also screen them for ADHD.

One of the most interesting things I learned on the call was about how people with PDA can use role play and pretend, often to extremes, to cope with demands – they can pretend to be, for example, an animal so they can’t do a thing because they have paws! But also they might pretend to be an entirely different persona, one who can meet demands and be acceptable to the person they are talking with. This is also exhausting and difficult to sustain but Laura talked to us about how one of her clients kept it up for hours during an assessment, only to crawl into bed once home and be unable to do anything for the rest of the day.

This reflects PDA behaviour – People with PDA will put a disproportionate amount of effort into NOT doing the thing which would have taken far less time and struggle to accomplish. Some PDAers will play the part of ‘The Compliant Child’ – they can mask for 5-6 hours a day – not cause an issue, not raise their hand, and cope with a high demand environment like school in this way, which brings issues all of its own because again, once home and in the safe space, their frustration and anxiety will exhibit itself; schools see nothing of this and parents are once again blamed. A person with PDA can also show obsessive traits of loving or loathing – become fixated on another child/teacher/celebrity in these ways, all of which can cause problems. There may be no logical reason for the attachment or the revulsion, and it is very difficult to address.

People with PDA might not recognise status or authority because they can’t see how just ‘being an adult’ or wearing a certain type of uniform, translates into being able to tell them what to do. ‘Why can a teacher sit in a comfortable chair? Why can they wear what they want? Why can they shout but we can’t shout back?’

This leads to one of the most important aspects of understanding PDA –

RECIPROCITY.

A person with PDA needs to be treated as an equal, to feel that they have equal status in a relationship and have the same respect and rights afforded to them as everyone else they are dealing with. Again, this leads to huge problems both within families and schools.

PDAers can be incredibly imaginative and empathetic – too empathetic sometimes, so that they take a person’s sadness/anger incredibly personally, and/or it affects them profoundly. This also means that they are hyper aware of body language – a sigh, an eye roll can be picked up on immediately and taken to heart, even if it wasn’t directed at them. A person with PDA might ask you, ‘Why are you shouting?’ when you are not raising your voice; the best way to deal with that is not to deny it – they genuinely think that is what has happened – but to say ‘I’m sorry, I didn’t realise I was shouting…. Sorry, I’ll try to lower my voice’

Routines, which can work so well for autistic people, can become demands for PDAers, and they need more spontaneity. They can also have issues with impulsivity as mentioned earlier, will ‘overstep the mark.’ They will also speak the truth and demand the truth – they will call out anything they feel is inauthentic and will sniff out if a person is trying to ‘sneak’ a demand past them!

Laura spoke to us more about how irrational PDA can be, and about how people with PDA can avoid things they desperately want to do but ‘My brain and my hands refuse’. She gave the example of a girl who wanted to play the guitar but the demand was too great and she couldn’t pick up the guitar her parents bought for her. Another person couldn’t shower, because it was a hygiene demand, which left them feeling awful about themselves. There is a lot of guilt that PDAers have to deal with which we don’t always recognise.

Laura emphasised how schools should be making reasonable adjustments based on NEED not on what a diagnosis might say, if the PDA profile is not commissioned by a health trust. It can make all the difference to a person’s life.

AUTONOMY

This is the crucial part, what drives PDA behaviour. It is not about avoidance as such, but about needing autonomy. If your autonomy is perceived to be threatened, that’s when the PDA profile comes to the fore. Some have changed the acronym from ‘Pathological Demand Avoidance’ to ‘Pervasive or Persistent Drive for Autonomy.’ Which is more positive and, in Laura’s view, more accurate. It is not necessarily the need for CONTROL but the need for autonomy. Control comes in when autonomy is threatened.

Laura gave the example of the ‘helpful passenger’ (All drivers will have had one !) You have invited a person into your car (Laura emphasised that a person only does this because they trust or feel safe with that person) but this passenger then starts telling you how to drive (watch that red light up ahead…slow down a bit…you are too close to that car’ etc .)Your reations are irritation, frustration, anger, even (in my own case) to get a bit sweary with your husband! This is how a PDAer will react initially to attempts to place demands on them. If the ‘helpful passenger’ then tries to take the wheel and wants to steer you in a totally different direction, this provokes a much sharper, often physical response – a totally justified response, and one which ultimately results in stopping the car – refusal to go on any further. However, a PDAer can still enjoy having a ‘passenger’ – one who will joke, say interesting things, give helpful observations and make the journey more enjoyable and supported.

There is a time, however, when it is acceptable to grab the wheel – if the person is about to crash into something – then for safety, we must take away the autonomy – and this is about safety. We must intervene if a PDAer’s safety is at risk. It is, Laura, said, all about choosing your battles.

The person who is let into the car has to be trusted – and this is an important lesson for teachers – about building up trust and relationships with PDA students. This was a really interesting analogy which helped me to understand the feelings of PDAers when their autonomy is challenged and threatened – and how we can make their journey through life easier and less terrifying.

CHOICES

Many PDA strategies involve offering choice – and this can be a helpful way of supporting our children but this too, can become a demand, especially if a person is already anxious. Involve the person with PDA in those choices – don’t just impose a choice on them and definitely don’t make it a choice between things they really don’t want to do. Laura explained how most PDAers are autodidactic – they can teach themselves things and are very good at self-learning and will thrive when given the chance to do so.

BE AWARE OF THE KINDS OF DEMAND THAT CAN BE PLACED ON YOUR CHILD

Direct:

‘Go to bed’ ‘Brush your teeth’

Subtle:

‘It’s time to go to bed…

‘Let’s get your teeth brushed’

You need to get up now..’

Silent:

Visual timetable

Tapping your watch

Putting dinner in front of a child

Timers

Rules (school, games)

Manners (social expectations)

Self-imposed: Perfectionism (v common, e.g. a child will rip up work if not perfect)

Time-keeping

Sleep

Deadlines (this can lead to self-sabotage)

Even just saying you hope your child has a nice day can mean the day will definitely NOT be nice because there is now an expectation for the day to go well. They might make sure their day is not good because it takes away the anxiety of the expectation.

We should also try to shield our children from the additional demands of special occasions – like Christmas or birthdays etc, don’t expect them to conform to the social niceties of kissing granny on her birthday, or coming down to meet family who have arrived for Christmas.

Even showing enthusiasm for something they want to do can create an expectation and a demand – one child described how, if her parents got too excited that she wanted to try something new, it took away the desire to do it because it placed too much expectation on them succeeding and enjoying the activity.

ANXIETY

Laura talked about how a PDAer’s response to anxiety might come across as ‘manipulative’ which seems very negative, but also how that word originally meant ‘reshaping’ - and that is what a person with PDA will do – try to reshape the demand. They might do it by:

Arguing
Refusal
Excuses
Delaying
Fantasy
Flattery
Physical actions

Laura reiterated that what drives PDAers is ANXIETY – and the nervous system’s response to threat. Laura talked about the perception of threat. She asked us what we were commonly afraid of in life. She chose one person’s example of how public speaking made her afraid. Laura said that this might induce feelings like a dry mouth, increased heart rate, trembling, panic, not being able to find the words etc. All of these feelings are just the same as if we were suddenly made aware that there was a dangerous criminal just across the street – your brain doesn’t differentiate between a real or perceived threat - the reactions are the same – it doesn’t matter if there is no real threat to your life, so we mustn’t invalidate the anxiety PDAers feel when they perceive a threat to their autonomy.

As when she talked about Autism and ADHD last year, Laura used the Bucket analogy to describe what it is like to be neurodivergent (ND) as opposed to neurotypical (NT.)

If the brain is a bucket, into which is poured the anxieties and demands of life, then NTs have lots of holes in their bucket to help them drain away the excess demands/anxieties and deal with them efficiently. NDs however have none, or very small holes, so their bucket reaches capacity much more quickly than their NT peers. Autistic people have a much higher baseline of anxiety – sometimes just getting into the school building can fill up their bucket and they have no capacity to deal with anything else.
Laura suggested parents and carers could draw a picture of a bucket and ask their child, what fills up your bucket?
Then ask them, ‘What puts a hole in your bucket?’

Find out FROM THEM what causes the anxiety, and what can alleviate it. Laura recommends giving children TIME to recover after high demand activities, so avoid lots of after school activities/clubs etc – factor in the ‘bucket emptying’ time. Anxiety can have different guises – we can’t always tell when our children are anxious, so try to work out the ‘anxiety face’ does it look sad, angry, shy, etc.

RESPONSES TO DEMANDS

A person with PDA needs Empathy, Validation, Time and Space – but they can’t always communicate any of this because their anxiety is so great. Responses then might include: Ignoring you, going mute, swearing. throwing things. Laura says to treat this like a panic attack, which is happening because the bucket is full and the anxiety has nowhere else to go. A child might not even remember their extreme response, as happens to many people who suffer panic attacks. There are fluctuations in demand capacity, but generally, the higher the anxiety, the lower the tolerance for demands.

Laura repeated the advice to PICK YOUR BATTLES

How important is this demand? Some are non-negotiable, where safety is involved for example – a child must wear their seatbelt, or use a pedestrian crossing on a busy street. But try not to fill the bucket with unimportant stuff, or there will be no room for the non-negotiables.

The right approach can be life changing so it’s crucial to identify what that will be for your unique PDAer.

HOW TO SUPPORT A PERSON WITH PDA

1 – Maintain your relationship and your personal connection, which is really important for wider family members and others in a position of supporting your child. Take TIME to build up a relationship. This includes teachers – but can lead to issues if a teacher is away.

2 – Reward systems are mostly ineffective. If the reward is not in the control of the PDAer, it creates anxiety about whether they will receive it or not. A planned reward becomes a demand and is of no value.

3 – It is better to bring up the natural consequences of a behaviour rather than construct a punishment ‘You could decide not to brush your teeth, it’s just that cavities will happen which are painful.’

4 – Empathy – talk about what helps to reduce anxiety around certain tasks.

5 – Challenges and races can be helpful, make a task fun ‘Who can put their coat on the fastest – I think it’s you but I’m willing to beat you!’

6 – SHARE a demand – sharing a demand makes it smaller. Get involved with the task which increases the reciprocal relationship. ‘I’m going to pick up these toys. Do you want to help me?’

7 – Give choice but be careful not to use it to trick a PDAer into conforming – as discussed earlier this will just make them more anxious, and they will spot it a mile off. Remember that higher anxiety leads to lower cognitive ability so making choices might be more stressful when a person is highly anxious.

8 – Praise indirectly. For a person with PDA, they need to feel that the praise is deserved. It can also raise an expectation to do the praiseworthy thing again to the same standards. To expect a response to praise, like ‘Thank you, I appreciate that!’ is also a demand. Instead use ‘I’ statements, e.g.: ‘I love that idea’ or ‘I’ve loved doing that with you.’

9 – Unless safety is involved, pick your battles ‘Why am I asking this?’ ‘Is this absolutely necessary?’ Natural consequences may follow if, for example, you take a child’s coat out with you if they refuse to wear it, they may realise that the consequence of not wearing it is to feel uncomfortable and then will put it on.

10 – Give your PDAer a sense that they can help but don’t impose responsibility on them. Involve them on a n equal footing and give them a chance to show you what they are capable of.

11 – Take a genuine interest in their interests. Laura gave us a fabulously gross example of where this worked superbly – no details, but it did involve pimple popping! Shared interests can lead to a stronger sense of equality and support those close relationships which are so important.

12 – Sometimes a PDAer can push through the demand if the value of the activity is worth the anxiety but this can lead to exhaustion.

13 – Be aware that Rejection Sensitivity Dysphoria is common in PDAers – again, facial expressions, sighs, words can all be interpreted negatively when they were not aimed at the child.

14 – Give your child a SAFE SPACE and respect it, protect it. This takes us back to the family visits and not forcing them to come away from their safe space. Try to look for safe spaces outside of the house too, where they might be necessary, think about their environment.

15 – MAKE TIME FOR YOURSELF (easier said than done but important.) Role model how to relax and how to manage your emotions. Show your PDA child how you are feeling but also how you regulate ‘I am feeling quite cross at that person who just pushed into me, so I’m going to take a few deep breaths to calm down.’ Show your child that it’s okay to have big feelings, but they can be managed.

16. -Using a SCALE can be helpful. Agree with your child about a scale of their anxiety. 1-3, 1-5, or 1-10 so you can ask simply in a situation ‘Where are you?’ or ‘Are you on a three or an eight?’ and they can immediately and simply give you a sense of their feelings. This gives them power and security and sometimes not even the need to verbalise, they can show you with their hands.

17 – Communicating differently can work– by text or with memes/gifs/emojis which also encourages a shared humour which PDAers often appreciate.

18 – Apologies are powerful. You are going to get it wrong, or lose your temper, and if you do, own it, apologise, explain. It’s all part of that important sense of equality.

19 – You don’ t have to do everything as a family – use a Venn diagram to explore what your PDA child likes to do, what their siblings like to do, and when you need do things separately or when you can come together. This reduces anxiety around being expected to conform.

20 – Sometimes all you can do is be there. Co- regulation can work well, meeting your child where they are at with their emotions. Letting them know that you get it, and it will be all right.

Work together as equal partners (unless safety is involved) and find that balance together.

Laura then took questions on PDA in school, how schools have one idea of supporting typically autistic students and need more PDA training, and how to get PDA assessments.

It was a really informative and interesting presentation, with lots of examples from Laura’s experience and from her books. Her books are available to purchase and links to those, and her website are below.