Wednesday, 21 December 2016

Strategies for PDA (Pathological Demand Avoidance)

Pathological Demand Avoidance is a type of Autism characterised by extremely high levels of anxiety. People with PDA are generally best supported using 'non-typical' parenting strategies which I explain in more detail below. 
Red box with white text and list of strategies as detailed in post
These strategies can help both at home and school for children with PDA. I need to first of all give you this disclaimer though: I don't own a magic wand. 

I wish I could personally help everybody who is facing these struggles at home, and I wish I could say that what works for us will work for you, but if you read on you'll see that one of the key messages about PDA is that what works today may not work tomorrow... 

Nearly seven years on from diagnosis, I would say I'm an expert in my own girl with PDA. At times though, such as over the last few weeks when my catalogue of strategies seems to be wearing thin, it doesn't feel like I am any kind of expert. Times change, and you have to roll with it - that's true for parenting any child. Working out what works for children with PDA though can be a different level of exhausting. 
So, my starting point for advice is....

Read more; understand the condition.

There's plenty of advice on the PDA Society website (incidentally, the PDA Society is formed of a group of parents who all have children with PDA themselves, and they all volunteer for the PDA Society to help others).

Cast aside any notion you have that typical, or stricter, parenting will work. In a previous post I've discussed in detail the difference between PDA and ODD (Oppositional Defiant Disorder), so I'd highly recommend reading that to understand more. In a nutshell, children with ODD will benefit from more rigid boundaries and good use of reward and consequence schemes; children with PDA do not respond in the same way. In PDA, the avoidance of, and refusal to comply with, everyday demands is driven by high anxiety. It is not caused by an inherent desire to be oppositional and gain attention.

Sure, a sticker chart or promise of a reward may work in the short term, but then again, it may not. So I totally understand when others are confused - 'but if she's done that once, why won't she do it again?'. The not-so-simple answer to that is that children with PDA are very complicated; they are spending a huge amount of time trying to cope with different pressures, some of which you can see and some which are not so obvious to those of us who don't have the same struggles.

Now onto the strategies...

Be flexible

One of the biggest challenges with PDA is staying on your toes daily, pulling different strategies out of the bag. A phrase often used is that it's like 'walking on eggshells'. In other words, a great deal of care is being taken in order to avoid complete refusal. To onlookers, this may seem haphazard and random, but a lot of thought and intuition goes into how to approach tricky situations. It's draining and relentless for some families. There's no point having fixed ideas of how you want to achieve something; flexibility is key to success.

Build relationships

As for most autistic children, good relationships really are crucial for progress. Trust can be built up when the child realises that the difficulties they are facing are actually appreciated and understood. It's necessary to watch every little reaction of the child with PDA, to unpick where the anxiety stems from and to understand what the issues are on an ongoing basis. Being proactive will help in the long run. It's only through these successful relationships that the anxiety levels can be reduced.

Plan ahead

This feeds back into the first point. Whilst on the one hand flexibility is required, some thought about what may happen and planning for different scenarios is also key. I don't tend to go anywhere without a Plan A, B and C - and even Z in some cases! The chance to escape before it all gets too much is important, so I always make sure there is a quiet space, or easy access to an exit etc. As for many autistic children, the more information you can provide about what will happen on an outing the better; time and method of travel, what can be expected once there, visuals of what the environment will be like. All of this preparation is more likely to make an event successful, but as with most things PDA, there's never any guarantee.

Offer choices

Not too many choices, as otherwise the demand and pressure of picking one of those options may be too much. A choice of where to go, or what time to do an activity for example, will be much better received than an instruction involving 'now'. When children are younger, it may be possible to get away with offering a choice which you'd like to see as the outcome versus a not so appealing option. Beware though, because children with PDA are often wise to attempts at 'tricking' and this can lead to a breakdown in trust.

Choose words carefully

Or in other words, never say 'no'. Even when our girl was still quite young and not properly speaking, I'd joke with people that her favourite word was 'no' - as long as she was the one using it. If we dared to use it, it would pretty much guarantee an outburst of extreme anxiety as control was lost, and nothing else would be achieved that day. It's important to say that this was not the same as a toddler tantrum (or a teenage tantrum for that matter). I'm not a huge fan of the word meltdown, but I can assure you there is a difference. Was my girl capable of having a tantrum? Yes, for sure, and the difference took some working out to begin with. Over time though, we began to understand when the upset was driven by anxiety and a need to avoid demands rather than a 'want', a materail wish for something. 

Of course there are times when it might be totally necessary to use the word 'no' - a good example is when there may be danger involved. So yes, if a child is about to run in front of a car then an urgent 'stop' or no should be used, but it's important to save this kind of language for when the situation is most drastic. The child is then far more likely to listen and trust that it's important.

Direct demands should be removed from language wherever possible; there's a need to rethink all the words used to communicate. So no 'need, must, have to' and instead much more of 'may, could, would you like, how about' etc. More of 'I wonder if we might be able to..' or 'I'm not sure how to do this, do you think you can show me?'

Actions can be also phrased as a challenge or fun game rather than a direct demand. So instead of 'time to brush your teeth' we might say 'I bet you can't finish brushing your teeth before I've finished mine' or 'race you to the bathroom' (bearing in mind that children with PDA need to stay in control and therefore you are never allowed to win the game/race).

There's also the option of using a third (invisible) person to enforce rules for example - 'I don't think it's the best idea myself, but the health and safety people say it's very important' - as then the demand is not coming direct.

Use humour

This strategy kind of falls under the type of communication used as above but deserves a point all of its own I feel. We wouldn't achieve half of what we do with Sasha if we didn't act the clown occasionally, or phrase requests (not demands) light-heartedly.

So an example might be calling yourself stupid as you pretend not to see the pair of shoes which need putting on right in front of you. Humour can de-escalate a tense situation, or provide a distraction.

Remain calm

Believe me, I know it is extremely difficult to use humour and stay calm when all you want to do is leave the house and not be late. It's even more difficult to not talk and joke through gritted teeth. These children pick up on your tension though, which in turn adds to their anxiety level, so it is vital to avoid showing your own emotions. Understand and decide in advance what the priority is - is it getting there on time, or is it leaving the house at all? Then even if it matters a whole lot to you, don't let it show!

Reduce demands

Have you ever thought about how many demands are made in an average day? Before even leaving the house: wake up, get up, toilet/wash/brush teeth, get dressed, eat breakfast, get bag ready, then putting shoes and coat on. There's probably many more which could be added which we do on a daily basis. For a child who is worried about getting any one of those activities wrong, that's a whole heap of extra demands that need to be juggled. Add in any sensory issues, any difficulty with processing information and anxiety about time pressures, all of which are fairly common with autism, and the coke bottle effect is likely to come back into play.

Of course I'm not saying that we can just forget about doing any of these actions and just stay in all day (although sometimes, that's as bad as it gets), but we can appreciate the difficulties involved with these cumulative demands and try to make them easier. Sensory issues, and socks are never right? Maybe seamless socks could be considered. Having to leave by a certain time? Try to allow more time for getting ready, or alternatively consider whether that time for leaving can be pushed back in any way.

Pick your battles (or choose your challenges)

This is not the same as lowering your expectations, although that may also apply in many cases. It's a case of weighing up what matters more to you - is it clean teeth or leaving the house calmly? Obviously most of us would prefer both of those things to happen, but given that they won't, which do you choose?

If you drop the teeth brushing (not that I'm advocating that, in case my dentist is reading...), are you more likely to be able to leave the house on time in the morning because the rest of the routine runs smoothly?

It might be the choice between your child sitting at the dinner table for a meal, or them eating food with good nutritional value, wherever in the house they choose to eat it. It could be letting them choose to wear no coat in winter because they literally won't leave the house with one on.

For every family, the battles will be different, and for every family with a child with PDA, the scope of the battles is likely to change frequently (see point below about being spontaneous).

Tread carefully with routine

Routine can be good...except when you need to be spontaneous. For children with PDA and autism in general, there can be some comfort in knowing what is expected to happen as that reduces anxiety. Conversely however, being expected to do the same thing every day can be seen as a demand in itself and the child who wishes to retain control to manage their own anxiety levels may need to break this cycle in order to feel they are in control.

Told you it was exhausting, didn't I?!

I know that these are only 'topline' strategies and I wish I had the time to answer every individual query, such as 'what do I do when he won't leave the house?' or 'how do I get her to turn the iPad off and go to sleep?', but it would need to be an extremely long blog post to explain all the steps you'd need to try to get there. I'd maybe start by figuring out how important it is to you for your child to turn the iPad off at a certain time, and then think of maybe using all of the above strategies in order to try and achieve it. Being perfectly honest though, as I pointed out at the start of this post, it may work one day and not the next....

I'm well aware that some people will read this post incredulously, and use some hideous phrases such as 'picking and choosing too much', and 'what that child needs is some stricter boundaries'. I've heard them before sadly. I sigh, and I wish that I could invite them all to come and live with us and understand what it is that makes our younger girl different from our older girl. We see and live the difference every day.

I do feel extremely lucky in some ways that we had our other, neurotypical (typically developing, not autistic) girl first, as it made the different reactions from our youngest girl clearer for me to see. I'm also lucky that Sasha has mostly acted the same way in school and other environments as she does for me at home - she doesn't yet do the 'masking' which many other autistic girls seem to use as their own coping mechanism. Many children with PDA have the added fear of breaking the rules, so they do their best to conform at school all day. Sadly the effect this has is similar to a pressure cooker; when they are home again, where they feel comfortable, they are more likely to explode at even the smallest demand.

Half of the battle though is understanding. When you accept that your child is not doing this to you just to be oppositional but rather because of an underlying extremely high level of anxiety, then you can start to work around it and let go of some of the traditional parenting techniques which simply don't work. It may just lead to a calmer life all round.

Since writing this post I've shared a guest post on my blog, from a mum who also happens to be a specialist teacher, with some strategies aimed at those trying to educate these children. You can find that at Pathological Demand Avoidance: Strategies for Schools. For now though, I'm going to leave you with a link to the Positive PDA booklet which is aimed at schools and offers lots of practical examples of how to approach working with these children.

For more reading, please visit the great resources page which the PDA Society has produced.

pinnable image with strategies for PDA

For more information about PDA, please read the book shown below: 
* this is an affiliate link and I may receive a small commission if you click and go on to buy anything. It won't cost you any extra.
Book cover for Understanding pathological demand avoidance syndrome in children, by Phil christie, margaret duncan, zara healy and ruth fidler
(Other PDA books can be found in my 

To find out more about our experiences, please check out our 'About Us' page or the summary of our experience in Our PDA Story Week 35. If you are looking for more online reading about Pathological Demand Avoidance, the posts below may help.

What is PDA (Pathological Demand Avoidance)?

Ten things you need to know about Pathological Demand Avoidance

Does my child have Pathological Demand Avoidance?

The difference between PDA and ODD

Strategies for PDA (Pathological Demand Avoidance)

Pathological Demand Avoidance: Strategies for Schools

Challenging Behaviour and PDA

Is Pathological Demand Avoidance real?

Autism with demand avoidance or Pathological Demand Avoidance?

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  1. I've just found your blog as I'm convinced my 6 year old has PDA. I only stumbled across the term through researching ASD as he has so many traits of this. When I read about PDA I had the lightbulb moment. We are absolutely convinced that he has this. Although there are moments when he is more compliant and you are left scratching your head, wondering if you are imagining it all (is this normal?!)These moments tend to be when it is the school holidays so I think he is more relaxed. We have an appointment with the SENCo lady at school and an appointment with the GP. Just wanted to say how helpful your blog is. Thank you :)

    1. So happy to hear it's been helpful. Thank you for saying so!

  2. I really appreciate your blog. My son is almost 13, has Asperger's,ADD and undiagnosed PDA. He has had symptoms all his life and life is definitely like walking on "eggshells"! We are following the same strategy as yourself as suggested by his psychologist. I just wanted to say your blog is so helpful for understanding we are not alone and we are blooming good parents doing the best we can for our children! Others who don't understand it don't realise what life is like every day, but with blogs like yours, it makes it that little bit easier, knowing we are going through the same journey! Thanks again! X

    1. Thank you - yes so many families out there having these struggles and I'm passionate about trying to stop the blame which is thrown at them! x

  3. We have been struggling for years with our son aged 11 and after seeking some professional help they believe he fits the profile of PDA. Can you recommend help for settling him at night. He gets out of bed non stop and calls out relentlessly for hours, repeating the same things and behaviours over and over again. It takes up to 3 hours every night and is having a massive impact on his brother and us as parents

    1. Hi, I will be publishing a blog post on sleep shortly so please do watch out fo rthat - if you sign up via the subscribe by email box it will come directly to your inbox!

  4. Thank you Steph for your really useful blogs and articles. I've only just come across your site, thanks to a link from someone else. My middle daughter is diagnosed with Autism, but in our local area, they do not specify PDA, although we asked them to. Our eldest girl also has Autism and we see several differences between them. Have you found that many areas do not specify PDA? Also, I was wondering if anyone else's child does not struggle at school - Jackall and Hyde definitely fits our story - so much so that most teachers do not beleive that there are any problems, yet we see them all at home! They see a bright, articulate girl.

    1. There are definitely many others who have children who just about manage to hold it in and fly under the radar at school - a few of them have written in my series Our PDA Story (these can be found via my menu links). It is taking different areas a while to come around to the idea of PDA, but it's worth pushing for your child's individual characteristics to be detailed in reports regardless of whether they will use those three letters!

  5. Hi. I’m not the most eloquent person, but I wanted to say how much your blog has helped me. I have a sweet, sensitive girl of 9. Her first word was “no”. And she has always struggled to comply with the simplest asks. She had speech therapy, and has the 3 D’s of dyslexia, dyscalculia and dyspraxia. It really was a lightbulb moment reading of pda. Problem is she masks very well so no asd diagnosis, although with her sensory issues plus other signs it would not surprise me. I can still make family life easier by trying these methods.
    Her resistance default if nothing else works is to shutdown and lie on the floor. She will then scream or kick if anyone pushes her. But generally the lying down or balling up. I joined a pda fb group and it scared the hell out of me, the violence. But that is not my girl at all.

    1. Ah, well thank you for taking the time to say so, that's kind! Our girl is also not violent but I feel for those who are. And yes I appreciate it's more difficult when they mask with others x

  6. thank you for your post/blog/website.
    There is feeling in your words which confers  much more than the professional offerings.

    Our son was diagnosed with 'anxiety' a few years ago. We have been battling on his behalf since he was 6. We believe he may be on the spectrum (high functioning), PDA and possibly ADHD. We have recently learnt about ODD, very interesting..!

    As a result of our labours, at 9 he gained a place in a Behavioural School, where he thrived. We continued to suffer at home, perhaps he was successfully masking.
    After a disastrous 18months in mainstream secondary, he was extremely lucky to be offered another Behavioural secondary school place (out of county). He is doing well there.
    He is now 14. His problems have continued. Being 14, these are on a more serious level.
    After 8 years of knock backs from the Child Development Centre, they seem to be about to take him/us seriously. We have had the police out 4 times in 8 weeks. One night he was arrested on suspicion of Common Assault (against his Mum) and of Criminal Damage (on items in our home): on that occasion he spent 6hrs in a cell. In this same period he has also smashed his bedroom door to pieces and gone missing more than once, afterwards claiming to have sat with adults in their property (during lockdown) while they openly used drugs.

    So for the CDC to start to listen (still an assumption, the initial assessment interview is next month), it has required repeated referrals by the police AND his school AND our family doctor.

    I believe that precisely BECAUSE we investigated and employed strategies to help him, we have been ignored by the services who are supposed to support him. He is highly intelligent; I cannot overstate the potential he possesses to do great things or to become a power for good to those around him.

    We continue, as we always have, to embrace what we are offered.
    -1st attempt by Family Solutions useless
    -DBiT were brilliant
    -CAMHS councilling was damaging to us all
    -2nd Family Solutions has just started and is promising (NVR anyone?)
    -Initial impression of his new school councillor was good, however his first 1-on-1 session seems to have made them 'go cold' with us..?

    How dare we (following a light bulb moment) dare to suggest to qualified professionals we think Autism/ PDA ? We have sat in a room with 20 of them and had our knowledge questioned "which books have you studied, by whom?".
    As he approaches adulthood, and thereby may leave full time education, we fear they will continue to palm us off as they have for almost a decade, until they no longer have any legal obligation.

    At home, after a huge concerted effort by us both to build our relationships with him, he once again turned on us on several consecutive evenings, leaving us traumatised.
    Our emotional states vary; despair, numbness, hopelessness, helplessness.
    Our faith in the mental health services is non-existent.

    I'm ashamed to confess I now feel that if I had advance notice of the struggles I would face, I would have taken the decision not to have our son.
    I know I still love him, but I fear he doesn't.
    I know that when he is at his worst, is when I should love him the most. But can I?

  7. It’s a comfort to read this, because I relate to it in regards to my daughter. Especially the ways to handle it as a parent. Ive been doing those strategies all along ( and often feel judged by other parents). But the strategies feel intuitive. Unless you live with and see it in action, I think it’s hard to understand.

    1. I totally agree with you. And the people who judge have no idea and aren't worth worrying about x


Comments are always very much appreciated and can really help the conversation go further...