How to manage Pathological Demand Avoidance (PDA)?

Firstly, what is PDA?

Shared from www.pdasociety.org.uk:

“Pathological Demand Avoidance (PDA) is now widely recognised as a distinct profile of autism. Individuals with a PDA profile will share similar difficulties to others on the autism spectrum in the following areas:

  • Social Communication Difficulties
  • Social Interaction Difficulties
  • Restrictive and Repetitive patterns of behaviour (including sensory seeking or sensory avoiding behaviour)

In addition, the central difficulty for people with PDA is their “anxiety-driven need to be in control and avoid other people’s demands and expectations.” Understanding PDA in Children. Christie, Duncan, Fidler & Healy (2011). Furthermore, research conducted by Newcastle University in 2016 concluded that this extreme anxiety could be underpinned by an “intolerance of uncertainty”. 

So what does this mean in practical terms?

This means that your child may demonstrate extreme behaviours as a reaction to every day demands. It is not uncommon that these behaviours will include physical violence (generally on the main care giver but not exclusively), trashing the environment (upturning furniture, throwing everything and anything in sight) and explicit language.

The reason that PDA is often so difficult to manage is because one of the key features of PDA is Excessive mood swings and impulsivity’. This can mean that your child can have great difficulty in regulating their own emotions and controlling their reactions to situations and people. Your child can rapidly switch from happy and engaging – to angry or sad in seconds, often with no visible build up or warning to others. This may be in response to pressure of demands and perceived expectations’.(PDA Society)

Before you have that light bulb moment and discover that your child ticks every box for PDA, you are likely to be literally on your knees not understanding your child’s irrational and extreme behaviours! Additionally you have probably Googled every condition under the sun trying to figure out why your child is behaving in this extreme manner!

The importance of using PDA strategies over Autism (ASD) strategies!

I cannot stress enough how paramount implementing specific PDA strategies are!

The strategies for PDA are TOTALLY different to those suggested for ASD and are even indeed polar opposite! So don’t be fobbed of with being told to use strategies for Autism or to book yourself on to a parenting course!

With this in mind, it was vital that not only the parent but also others, in particularly teachers, take a PDA stance in their approach when interacting with the child.

When supporting a child with PDA, having structure, boundaries, consequences and inflexible routines will only antagonise things and is a sure way of triggering a meltdown! Our PDA children need FLEXIBILITY and need to be made to feel in control.

Prior to using PDA strategies

For us, before I started using PDA strategies and truly understanding that my daughter’s negative behaviours were being driven by anxiety and not poor behaviour, we were experiencing 4-6 massive meltdowns per day! These could and would last for hours!

A ‘meltdown’ for us would mean my daughter in great distress, screaming and shouting, me being physically attacked and injured, I would be called every expletive under the sun and the house would be trashed with many a broken item! It was nothing short of chaos!

I also remember learning the hard way that consequences DIDN’T work! For example removing my daughter’s phone as a punishment for ‘being rude’ to me, actually resulted in the situation escalating and me being physically attacked! Did the removal of her phone ‘teach’ her anything or eliminate this behaviour she was being punished for from happening again? Of course it didn’t!

Instead I had to start looking at what was causing the behaviours rather than punishing the behaviours.

Even waking her up in the morning, unbeknown to me at the time, was a DEMAND. This triggered full on meltdown on several mornings!

With mornings being so tricky at this point, it was suggested to me, by the Head of her now Specialist School, to make a visual prompt of all the things that I would like my daughter to do in the mornings ie wake up, brush teeth, get washed, get dressed etc and then allow my daughter to do these, unprompted, on her own. I remember thinking at the time that this was NEVER going to work! But do you know what, it actually did!!

In hindsight this shouldn’t have been any great surprise really as it took away all the demands that a morning routine brings and allowed her feel in total control!

The importance of using the correct terminology

Another really important thing to remember when communicating with a child with PDA is the way that you speak to them and how you word things. If worded wrongly, it will be seen as a demand or be misunderstood.

Make sure when you are wanting your child to follow instruction or do something that isn’t necessarily what they would like to do, then it’s important to phrase it in a way that makes you child feel safe and in control whilst ensuring you get the outcome you are looking for. For example, rather than saying ‘hurry up we need to go’, try ‘I’m ready to go when you are’.

It’s also good to give your child no more than two choices, any more than this is likely to be just too overwhelming for them. For example, rather than saying ‘you need to get dressed’ (DEMAND!), try ‘would you like to wear the blue t-shirt or the white t-shirt?’.

I quickly learnt that you need to pick your battles! Some things are just not worth the distress you will cause your child if you are insisting on a particular thing. I found it useful to have an internal chat with myself and actually carefully consider if THIS (whatever THIS may be) was something that really mattered? For example: would it really be the end of the world if my daughter didn’t brush her teeth that evening? If the demand was too much for her tolerance levels at that moment in that time, did is actually matter? No, it didn’t.

Strategies recommended from the PDA Society Website

Use indirect commands to disguise demands and make them fun – Try challenges e.g. “Bet I can get my coat on before you!” or “Can you show me……..”.

Sometimes, even when you don’t feel like making a game of everything, it is the important to remember that your child needs this.

Try to make them feel useful which also helps to maintain emotional well-being – e.g. “It would be really helpful if you could just……”.

Pretend you don’t know / get it wrong and ask them to teach you – e.g. Mis-read words in books, or ask them to show you how to do a certain task that you want them to do.

This is also a really helpful strategy as it demonstrates to your child that it is okay to get things wrong or make mistakes. This has been a real challenge for us as my daughter really struggles with things not being ‘perfect’.

Offer limited choices to give the child a sense of control & autonomy –  e.g.  “Do you want to have a bath or a shower tonight?” followed by “would you like to have your shower at 6.00pm or 7.00pm?” Be prepared to negotiate e.g. your child may say that they will have a shower at 6.30pm to retain a sense of control. N.B. offering too many choices or open ended choices can increase a child’s anxiety. Or use the ‘when… then’ philosophy – e.g. “when I have done my boring housework, then we can bake some cakes”.

Voice control – Use a calm, even tone of voice, especially when they are demand avoiding. If you convey anxiety, stress or anger in your tone of voice your child will pick up on this, their anxiety will increase and their tolerance for demands will decrease.

This is often one of the hardest strategies to overcome, however it is one of the most important!

Indirect praise – Praise may be perceived as a demand or an expectation to perform at the same level again. It can be helpful to give a child indirect praise e.g. talk to a relative about something good your child has done while they are in earshot – may be more easily accepted than directly praising them. Praise the object instead of the child e.g. “what an amazing picture, the colours are beautiful” instead of “you have drawn a wonderful picture”.

Use role play and props – Sometimes it can be easier and less direct to attempt communication with your child through toys and props e.g. using a cuddly toy e.g. “Teddy has asked if we can go to the shops today and if he can have an ice-cream?”. Another option can be constructing a conversation within earshot “I wonder if Ryan would like to go to the park on Saturday”. As children grow older this could involve text messages, Facebook messages, leaving notes around the house and so on.

I recall a period of time where my daughter wanted me to communicate with her as an evil Disney character and almost bark orders at her! This was a strange one as it goes against the grain of PDA strategies in one sense but then also made sense as it was using role play.

Model desirable behaviour – Reinforce acceptable, desirable and alternative behaviour in your own actions, but don’t instruct your child to do the same. It can be more productive to let them observe without the expectation that they should do this also e.g. “I feel so stressed and angry right now, so I am going to lie down in a quiet room and listen to some music to help me calm down”.

Other challenges

Sadly, often schools and other professionals aren’t on board with implementing PDA strategies and this is a massive challenge for many parents! However, don’t give up trying to educate them, you know your child best and using PDA strategies is crucial in reducing anxieties.

Parenting a PDA child is going to be one of the toughest, steepest learning curves you will probably ever experience, however if you can master the top key strategies above then you will be half way there to having a much calmer child!

If these strategies aren’t put in place then you are setting yourself up for one hell of a tough ride! Your child’s anxieties are likely to be through the roof and this will ultimately result in extreme negative behaviours.

Don’t get me wrong, it’s hard, particularly to keep your tone of voice calm and think on your feet, but you will see a dramatic improvement in your child’s behaviour. Don’t see it as ‘giving in’ or your child ‘winning’, this is not a battle, these are strategies to support your child.

PDA: My personal Top Tips

  • Grow a thick skin fast, it’s not personal!
  • Be a chief negotiator!
  • Be a master of thinking on your feet!
  • Pick your battles!
  • Don’t be afraid to be flexible! It’s not a sign of weakness!
  • Distraction and humour will become your best friends!
  • Don’t be afraid of appearing to others that you are ‘soft’ – it’s all part of the master plan!
  • Reducing anxieties = reducing meltdowns! Fact!
  • Test boundaries ie ‘normal parenting’ ONLY when your child’s tolerance levels allow. Our children still need to learn life skills, yes, but these need to be carefully timed
  • Keep a stock of alcohol (or chocolate, whichever is your vice)….you are going to need it!
  • Create a ‘Survival Kit’

What we had in our Survival Kit!

Our survival kit was used to distract and entertain our way out of a potential situation and also as a tool to help reduce anxieties. This was particularly useful when out and about.

Our kit consisted of:

  • An Ipod and headphones
  • Ear defenders
  • Pack of Uno cards
  • Pack of Top Trumps
  • A balloon – a brilliant tool to help calm and regulate breathing! Also good for humouring purposes ie makes a great ‘farting’ noise when blown up and then released!
  • Lollipops
  • Colouring book and pens
  • Wipes – for all eventualities including sensory overload
  • Chewing gum – controversial but for us helped stave off the constant hunger!
  • ‘Chew’ toys – to ease anxieties and be a great alternative to bite rather than herself or me
  • Fidget toys  

Where to go for further information

For further information and a host of helpful resources, please visit: https://www.pdasociety.org.uk/   

I would also highly recommended the book titled: ‘Understanding Pathological Demand AvoidanceSyndrome in Children: A Guide for Parents, Teachers and Other Professionals’, written by Phil Christie, Margaret Duncan, Zara Healy and Ruth Fidler.

Remember, above all else, ‘PDA strategies NOT ASD’…….

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