Wednesday, 30 October 2019

Rewards and Consequences with PDA (Pathological Demand Avoidance)

The question about whether rewards and consequences work with children who have the Pathological Demand Avoidance profile of autism is one which crops up fairly often whenever I am running training on behalf of the PDA Society. Whether it's being asked by teachers struggling to gain control in a classroom, or parents who have exhausted all the typical parenting strategies, there's always an incredulous look given when I respond, as if it makes no sense to be given 'no' as the answer.
Sasha looking out over the balcony at the sunset
(image shows our daughter looking out over a balcony at a sunset, with the words 'Rules and Boundaries: as parents, there are many rules we feel we should have that, in fact, we don't actually need to have') 

The answer relates very closely to what rules, or boundaries, or beliefs you have as a family. I'm not here to challenge how everyone else chooses to live their lives, but I will say from the outset that because of PDA, we have learned to parent in a style which probably falls just outside of 'typical'. Well, maybe a long way outside...

Parenting a neurotypical child


The part which I need to try to explain first is how our own experiences have shown us the difference between our NT girl (neurotypical = brain developing typically) and our autistic daughter. Our older sibling to our PDA girl learns in a typical way, and we've parented her in a traditional, standard kind of way. The same way that we, as her parents, were both brought up. That means for our eldest daughter we have used typical rewards and consequences, and praise.

We've never needed to do it differently for her; it just worked. Parenting a typical child is also not easy at times, I know. But I can honestly say, hand on heart, that even with the difficult times it is a million times easier than parenting our child with PDA. Okay, a slight exaggeration maybe, especially when teen hormones enter the mix, but it IS still easier overall.

The reason it is easier is because our neurotypical child follows patterns which we ourselves were brought up understanding as children, and which we therefore we expected from her. We expected her to do as she was told, after listening to and understanding basic rules. We knew that if she didn't, we could teach her what she was doing wrong by giving her a consequence. 

Some of the rules which families have at home are often not written down or even expressed at all, and yet children are somehow expected to know and follow them as they grew up. This is one of my early memories after our younger daughter received an autism diagnosis actually; it made me marvel at how much our older daughter and many other children had learned by 'osmosis' rather than direct teaching. 

As an example, I can guarantee that I never told either of our girls not to throw a whole toilet roll down the toilet bowl as they were growing up, and yet our eldest would somehow have known, or deduced, that that was not an action that was going to make mummy and daddy happy. Of course there's a chance that any child, diagnosis or not, might do this at a young age (and teenagers later on who are wanting to cause mischief perhaps), but once they get to a certain age (5, 6, 9?!) then they just realise it's something they shouldn't do. Our youngest daughter didn't seem to realise this, and even when we explained to her after the event, it didn't stop her from doing it again, without any recognition that she was doing wrong.

This kind of action could be attributed to a learning delay rather than PDA itself of course, but our girl didn't seem to have that learning delay - or at least it wasn't obvious in the early years. Later on we would go on to attend a clinic at Great Ormond Street Hospital where we found out more about Sasha's spikey profile, something which of course she still has today. What stood out for me was not just the inability to learn from teaching or from consequences, but the extreme reactions of our girl when she was told not to do something, or that she was doing something wrong.

Consequences 


Types of consequences used tend to vary between households according to age of the child and depending on what parenting methods have been decided on. One classic example for younger children might be the naughty step, another could consist of returning a child several times to their bedroom without any attention if they wouldn't settle in an evening. Some methods we used may have worked quicker than others, and we may have used different strategies to some other parents, but generally those strategies all came from the rulebook of 'typical' parenting. The type that Supernanny liked to teach.

In every situation where we had to use consequences, our older daughter learnt from the experience, didn't show any distress, and eventually modified her behaviour around that particular issue.

Not so for our younger daughter. It was clear from a young age that even with much repetition, nothing was ever learnt from a consequence. Initially we put this down to learning delays as mentioned above, and that certainly played some part, but what we also saw many times was extreme distress when some consequences were introduced. As time went on, I began to understand this was a result of the extreme anxiety which is so synonymous with PDA. 

Natural consequences are what we would use in our house. For example, if a toy or tablet was thrown in anger and broken, and we didn't have money to replace it, then not having it any more or having to live with it being broken, would be punishment enough. Over the years, because of the way we have altered our parenting style due to PDA, I can't think of any instances where Sasha is being 'wilfully' naughty and would deserve a punishment. 

This leads into a much bigger discussion about parenting styles and what people think is appropriate in terms of consequences and rewards, not something I can cover in this post. I will however mention Dr.Ross Greene and his 'kids do well if they can' beliefs briefly. An approach which is not specifically directed at those with PDA, but which I personally think makes a lot of sense. I'd urge everyone to watch the videos on his website under the Walking Tour section.

Boundaries


I'll never forget the time a new teacher asked me with a challenge in her voice about what boundaries we had in place at home. Every parent needs boundaries, right? 

'No' is a word which produces a wry smile from me. I often used to say that it was our younger daughter's favourite word - but only if she was the one saying it. If we ever used it, it would cause an extreme reaction no matter what it was in regard to. Funnily enough, this was rarely in a 'tantrum' kind of way. An example of how Sasha didn't do tantrums whereas our older daughter definitely did, would be the times when both girls were toddlers and we'd go to a toy store in town. It was always our eldest who wanted every toy on the shelf, especially the expensive ones, and who would beg and plead excessively, whereas Sasha would quite happily look at all the toys but ask for nothing more than the Peppa Pig chocolate lolly at the till point on the way out.

I learned fairly early on to only say 'no' in times where it was absolutely necessary though, so basically for immediate safety reasons such as running into a road. That way, when I did use 'no!', it drew attention from Sasha and would make her stop in her tracks - giving the word more impact than it otherwise would have had for her. 

So how do we show boundaries if we don't ever say no to our younger daughter? How does she learn right from wrong if we don't use consequences?

This is generally a tricky one to explain to others who don't live like we do. We very rarely say no outright, we use other ways and other language to say no. So for example, we might say 'maybe later' or 'when you're old enough'. Sometimes we might have to say that we can't afford something. 'No' is rarely used, and good explanations are always given for our answers to any requests.

I'm pretty sure that those who know us would agree that neither of our daughters is wild and out of control without boundaries; we are not choosing a 'free and easy' hippie lifestyle. Boundaries are there, but not in the way that traditionalists might recognise them. I think what we find ourselves doing to make sure there are boundaries, is talking through many possibilities, differentiating between right and wrong, and always explaining and having good reason for any rules which do exist.

Rules are different from one household to another. We probably have fewer than many others. I can't count how many times eyebrows have been raised when I say that Sasha doesn't sit at a table to eat with us, for example. That's a rule we don't enforce in our house. From a fairly young age, she's been allowed to eat pretty much where she needed to.

Now she is twelve, Sasha is much more able to understand the world around her, and she knows that other families would generally all be eating at the table together. That doesn't make it any easier for her. A lot of this may be down to sensory issues; smells, tastes, too much sound but possibly also the fact that her brain is always buzzing and she is still unable to engage in age-appropriate conversation.

Occasionally it is suggested to me that Sasha would be happily eating at a table as part of a formal sit-down meal now, if we'd have just forced her to sit at a table when she was younger. And likewise, that her diet would be better if we had made her eat a variety of food. And I sigh. Because do the people with those kind of comments not think that we tried? Do they not see or understand that our eldest girl would easily sit at a table with strangers and be polite? The bottom line is that Sasha's reactions when we tried to make her behave in typical ways when she was younger were just so extreme that it wasn't possible. It achieved nothing.

I'm often asked how I have the strength to be so positive and I admit that I feel lucky. Lucky that I have two daughters who are both so very different (and who I love equally, of course). Because our eldest daughter came first and we were able to parent her in a typical style, we could clearly see the differences in reactions when Sasha came along. We were lucky to stumble across descriptions of Pathological Demand Avoidance fairly early on and this also gave us confidence in our parenting and the fact that we needed to approach everything differently.

Rewards and praise


Rewards have very rarely worked for Sasha. If they have, it's only ever been if they are immediate, and if the reward is of her own choosing. My own take on why the carrot and stick approach doesn't generally work is that there are many outside influences at play which make it difficult for her to achieve - a lot of them relating to anxiety. The item to motivate her needs to be something she really wants (McDonalds chips in our case), but even then sometimes even the best reward in the world cannot help her get over the block to the perceived demand.

A good example of how variable this can be though, is how Sasha reacted to the school imposed reward system when she first started at her specialist school. I didn't for a second think she would show any willingness in the idea that if she did well at her work (or what the teacher asked), then she would be allowed to choose a reward from a set offering. This included some items on display in a cabinet, or the choice of a monetary high street voucher, or the option to exchange rewards for non-school uniform days. For the first few weeks (the 'honeymoon' period), Sasha seemed quite taken with the novelty factor and did start building up rewards in order to have some non-school uniform days. After a while though, the novelty wore off. Sasha had reached the gold level where she could have a whole week of non-uniform, but then struggled with anxiety over going in to school looking different from all the other children. She wasn't interested in the other rewards instead, and the next term she became unable to perform well enough to receive any more 'points'.

Praise could be a topic for a whole separate blog post but in a nutshell, our PDA girl really struggles with it. I'm not allowed to say well done and nor am I allowed to high five or show any other signs of happiness at her achievements. This is quite common among those with PDA I believe, although it doesn't apply to everyone. I'd say it's always best to check with the parents as they will most likely know how their child feels about praise.

One theory is that praise is a demand in itself; an expectation that the stakes will be raised and greater levels will be achieved the next time. For someone who struggles with anxiety and expectation, you can see why it might be an issue.

So, do rewards and consequences work with PDA?



Of course it's not as simple or clear cut as saying that no, rewards and consequences do not work for children with PDA. Nothing to do with PDA is ever that simple. There's a great quote from a chess champion called Garry Kasparov which I found over on the Harvard Business Review website, and I think it's very fitting in the PDA world: "Many people think that if something worked yesterday, and is still working today, it will work tomorrow. That's wrong."
garry kasparov quote
Strategies for parents of children with Pathological Demand Avoidance may work for a few days or weeks, then not over the next few, but may work again when tried in months or years to come. Or they may never work again. We've certainly experienced all of that over the past ten years since our youngest daughter was first diagnosed with autism. We've tried a lot, and it'd be fair to say that rewards and consequences haven't been hugely successful for us. I would advise others living or working with PDA to approach these strategies with a great deal of thought and reflection.




To find out more about our experiences, please check out our 'About Us' page. If you are looking or more information on Pathological Demand Avoidance, why not try some of these, my most popular posts?

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?



To follow me on other social media channels, you can find me at the following links or click the icons below!



Email Me Subscribe Bloglovin Twitter Facebook Google Plus Pinterest Instagram YouTube

8 comments:

  1. Our child has ASD but not PDA but I recognise so much of what you say. Typical parenting reward and consequences have not worked at home but interestingly he is able to follow those systems at school - lots of (masked) anxiety though.

    We have let the limited food choices and table manners slide in a 'choose your battles' way. It reduced a lot of issues and mealtimes are generally great even if not how we imagined family meals. It's hard to explain to others and I know we are judged (having not "persevered"). I use food as a reward and distraction and to help calm him. Possibilities of punishments have the result usually of making him so worried he'd rather not do anything - not reach towards the reward at all - rather than run the risk of the negative consequence. A small example - he won't enter any competitions.

    It's a fine line between pushing someone to rise to the challenges of life and doing whatever we can to reduce the stress and anxiety they feel. I don't always manage it but read a lot of what you, and others, write and it helps remind me. (It really doesn't matter that he's not used cutlery if he ate a good meal!) So I wanted to stop by and say thank you x

    ReplyDelete
    Replies
    1. Yes, I understand about the punishment side of things, meant to put that in too - it's linked to the fear of failure which is strong because of the anxiety I think. Thank you for the thanks! We can all do with gentle reminders every so often that we are doing our best x

      Delete
  2. Thanks Steph - rings true for me in so many ways, after many battles I have a 'kind of' equilibrium in my household, due to researching PDA and understanding how it is rooted in an anxiety response. We still struggle, especially with outsiders views, professionals included, who just don't get it!

    ReplyDelete
    Replies
    1. Yes. At some point you have to believe in yourself and your knowledge though and all you can do is try to educate others who are not living it 24/7 x

      Delete
  3. Our situation is not exactly the same as yours, but I love the way you explain why the parenting advise people give based on their experiences with neurotypical children do not often apply very well for us. I still constantly struggle myself with thinking in typical terms and have to keep reminding myself that I might need to adjust my thinking.

    ReplyDelete
    Replies
    1. Hi Yuji, yes it's definitely been a big shift in thinking for us!

      Delete
  4. oh steph, how timely is this post that I so needed to read today. I have always been able to relate to so much of what you say but I never understood quite why when we thought J was 'just' ASD and not PDA. yesterday we met with his school and his very experienced and excellent senco explained that he beleives J has PDA - all of a sudden I realised that is exactly why he sounds so similar to everything you describe - not wanting praise (even from a young age reacting badly to praise, not being able to say no to him, he hates the 'pressure' of having a time limit to do anything and so on) - I'm going to re-read everything with fresh eyes now as I think there is a lot we can learn from your experiences of what works and what doesn't. Because no-one else had seen it before I didn't feel we could see him as having PDA but all of a sudden everything about our struggles with him seem to make sense as being part of PDA.

    ReplyDelete
    Replies
    1. I hope it helps. You may find there's no perfect 'fit' but the strategies and thoughts behind what we do help anyway xx

      Delete

Go on, leave me a message, make my day! I love hearing from other people...

{Linkwithin}

Related Posts Plugin for WordPress, Blogger...

Subscribe