Challenging behaviour and PDA: Does Tough Love work?

'Tough Love' is a phrase that many parents of children with Pathological Demand Avoidance (PDA) will have heard before, and those who have children with challenging behaviour too. Supernanny is probably a big proponent of the following phrases:

'You need to be more strict'

'She needs to learn boundaries'

'She's had too much chance to pick and choose what she wants to do'

'Just say no'

'Rules and routine will help'

Yes, all of these have been said to me. I wonder, quietly to myself usually, why people think I haven't tried all of this? Wouldn't my life be much easier if I had just stuck at the traditional parenting methods a little longer with our youngest girl, and maybe she would have eventually succumbed?

It's not that simple. It wasn't a case of me giving up and being too lenient with one girl. Our youngest girl, diagnosed with autism aged 2 and a half, is different. She ticks all the boxes for a diagnosis of PDA (criteria mentioned in my post Great Ormond Street visit) and standard parenting techniques did not work. Our eldest girl, not diagnosed with anything, responded well to all of those techniques, and has grown up into a very kind, caring, sensible, mature and well-behaved tweenager (yes, I'm biased, but I'm sure there are others who will confirm this).

So what are these different strategies for parenting children with PDA? Here's a mind map, created by George Timlin, great for sharing with education staff:

a complicated diagram that can be downloaded via the PDA Society website by clicking the image

I also thought it might be helpful to give you an idea of just a few of the approaches we use. I've expanded on these in a later post titled Strategies for PDA (Pathological Demand Avoidance).

1. Never say 'No'. Be indirect

'No' has always been our youngest daughter's least favourite word. We laugh about this a lot, because actually it's possibly her most used word herself, but she cannot bear to hear it from others. 'No' is final, it leaves no room for movement if you want it to be believed, and as such we would only use it with a firm tone in an extreme case, if she was in danger. That way we know that she will respond to it.

So how do we stop her from doing non- life threatening stuff that we don't want her to do? We have to talk around it. We give options and choices and explain why it's not a good idea, or why it's not possible. Sometimes this involves using a third party to shift responsibility, or even using a little white lie if necessary. So when she asks to go to McDonalds again, we don't say no, we give a reason: 'sorry but we can't go because it's not open right now/we have no money left'.

How is this different to other children who may be just throwing a tantrum because they want to go to their favourite restaurant? One of her autistic characteristics is that she fixates on something and finds it very difficult to let go of an idea once it's in her head. It's the avoidance which means she can't accept the answer 'no', as that takes away control from her and causes anxiety. I'm sure plenty of parents use this technique with toddlers to avoid the tantrums without even being conscious that they are doing it, but it's not usually necessary once a neurotypical child gets past a certain age or stage.

Other examples of phrases we use are 'maybe not today', 'that might not be the best idea, but how about... instead?' or 'not right now'. Actually it's amazing how many different ways of saying 'no' there are. It's not 'wimping out' to avoid a tantrum, it's strategically avoiding a meltdown. There's a huge difference. A tantrum generally has a purpose or 'want' behind it, whereas a meltdown is usually due to anxiety or overwhelm.

2. Offer choices

Choices can remove the direct demand and help the child feel like they are in control of the outcome. It always helps to consider if there is a different way of getting the task done, and how important that particular task is in the first place. 'Would you like to brush your teeth now or after breakfast?' would be an example. Or 'which toothbrush would you like to use today, Skylanders or Disney Princess?'

3. Always have a Plan B

And C, D and possibly even X. Life with PDA children is so unpredictable, and I imagine that to be one of the major differences to living with children with other autistic profiles. Whilst PDA children like rules and routine to some degree (the autistic influence), they also like to be in control (the PDA influence) of what they do when, so rules go out of the window when other factors such as sensory issues come into play.

We'd love to go to a big family gathering for example, but we know we can't just simply do this without checking out the venue first, working out space and sounds, looking for a quiet area that our girl can retreat to when she's overloaded with sensory input, thinking about indoors and outdoors, and taking a variety of items and food which may help distract or prolong a good mood. With all of that, there always has to be a get-out, an escape route. We may not even make it in the first place, and we do have to accept that and hope that others understand that dragging her in anywhere would not achieve anything other than a meltdown, which can be long-lasting and have knock-on effects.

4. Use humour

PDA children generally respond well to humour, or 'fun' challenges. 'I bet you can't do x', or 'I'm not very good at y, can you help me?' are two ways to approach this. Being serious with these children tends to make them feel more anxious and will lead to them shutting down more.

So back to my initial question. Does Tough Love work? It might, for some children with challenging behaviour, especially those with Oppositional Defiant Disorder. The difference between ODD and PDA is a post where I tried to explain this as I see it, but in a nutshell children with ODD are not autistic. I suspect there are not many children with suspected PDA for whom tough love will work, though most parents will naturally try that approach first. My hope is that schools and practitioners listen to and work with parents to discover what works for each individual child.

I love these words taken from a document titled "Educational and Handling Guidelines for Children with Pathological Demand Avoidance Syndrome", written by Professor Elizabeth Newson in consultation with Phil Christie and the staff of Sutherland House School, as I think they sum up PDA perfectly:

However great the stresses of finding ways to teach a child with PDA effectively, they are nowhere near the stresses that families have to cope with; and one of the biggest stresses on families is the fear that the school will give up on their child. You can make an enormous difference, not just in helping the child to tolerate demands and to learn, but in enabling parents to meet the child’s continuing needs at the same time as creating a happy family life for brothers and sisters.

Whatever the difficulties, this is probably the most interesting and potentially rewarding child you will ever meet, who will challenge your ingenuity and flexibility every working day. This can be a growth experience for you and for your professional skills. One head teacher said ‘We never realised how interesting she was until after she’d left us, and we missed her’, reflecting perhaps the difficulties of having had to work without the support of guidelines.

There is much still to be learnt about PDA and as always I feel I am merely scratching the surface.

Also adding some useful documents from www.autismwestmidlands.org.uk:

For more information about PDA, please read any of the books in my post

Books about the Pathological Demand Avoidance (PDA) profile of autism

Stack of book spines, all books about PDA listed in the post link given

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.