Ten things you need to know about Pathological Demand Avoidance (PDA)

PATHOLOGICAL DEMAND AVOIDANCE (PDA) IS A PROFILE OF AUTISM

1. PATHOLOGICAL DEMAND AVOIDANCE (PDA) IS A PROFILE OF AUTISM

PDA is a type of autism spectrum disorder (ASD, or also called ASC, autism spectrum condition; both are now often shortened to be called simply autism).

In the 1980s, Elizabeth Newson, an international expert in autism, first recognised a group of children who were similar to other autistic children but with some common differences. In 2003, an article titled 'Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders' was published in the British Medical Journal.

Pervasive Developmental Disorder (PDD) was the over-riding term previously used in medical manuals for all autism spectrum disorders. (Atypical autism or PDD-NOS (with the NOS standing for Not Otherwise Specified) are diagnoses rarely given in the UK but commonly used in the USA I believe).

2. PDA CAN OVERLAP WITH OTHER AUTISM PROFILES 

Every autistic individual is unique and has different characteristics. So it stands to reason that there will be cross overs and situations where a clear cut diagnosis is not possible or even beneficial.

There are several other conditions which may also occur in children and adults diagnosed with autism; some of them are listed in the outer green circle in the image below. For example, Tourette's Syndrome, Tic disorders, OCD (obsessive compulsive disorder), SPD (sensory processing disorder), ADHD or ADD (attention deficit hyperactive disorder or attention deficit disorder), Dyslexia and/or Dyspraxia might be identified in some, but not all, children with PDA. Those conditions are not autism spectrum profiles; they can be present in individuals who do not have a diagnosis of autism. PDA is, however, a profile of autism, and sits in the blue inner circle of this diagram (produced by the PDA Society).

With thanks to the PDA Society for creating this slide and allowing me to share

3. INDIVIDUALS WITH PDA HAVE EXTREMELY HIGH ANXIETY LEVELS

PDA is 'an anxiety driven need to be in control and avoid other people's demands and expectations'. The control helps the individuals manage their anxiety so that they know what to expect and don't have to comply with demands which they find too difficult or overwhelming. 

'Can't help won't' is a phrase often associated with Pathological Demand Avoidance. In a nutshell, this explains that individuals with PDA can't help the fact that they won't do something - the reason they won't is because they can't; it's too difficult for them. Dr Ross Greene's philosophy is well worth further reading: 'kids do well if they can'. If they can't, it is because they are lacking in skills. Some of those skills are teachable over time, but the fact that some are missing or not developed is an inherent characteristic of the autism diagnosis. 

4. BOTH DIRECT AND INDIRECT DEMANDS CAUSE ANXIETY

Most people don't stop to think about how many demands we place on others, particularly children, during an average day.

'Wake up, get up, get dressed, brush your teeth, eat breakfast, comb your hair, put your shoes on, get in the car...' and many more, often before 8am for those going on the school run. They continue during the school day; 'sit down, cross your legs, get your books out, raise your hand if you want to talk, be quiet, line up for assembly...' and so on.

Those are the direct demands, which are obvious once we begin to consider them. Then there is the added stress of indirect demands. Peer pressure, wanting to fit in a group and being social but not knowing the rules, time pressures with bells ringing and transitions to new subjects or new classrooms needing to happen, sensory issues causing discomfort whether that be noise or smells or the feel of unusual fabric or hard chairs to sit on. The fear of the unknown, the dread of attention being focused on you, the knowledge that more difficult work is likely to follow if you do well and are praised. 

All of the above can raise the anxiety levels of an individual with PDA to a point where an overload, or meltdown, ensues. 

5. BEHAVIOUR WHICH CHALLENGES CAN BE A PANIC ATTACK

Challenging behaviour is a phrase used to describe actions which are difficult for the person they are directed at. This could include destructive behaviours, hurting others, kicking, hitting, running away and self-harm. A panic attack might lead to a fight, flight or freeze response. Our girl mostly refuses and avoids rather than fight or flight; she curls up into a mushroom shape and is impossible to move. As she gets older, her withdrawal is accompanied more often by screams and anger. Still challenging, but not to the extent that some families have when violence becomes a regular occurence.

It's important to keep everyone safe in the moment, but later look behind the behaviours to understand the cause. Then assess what can be done to alter environments or conditions so the anxiety doesn't overspill. For more support with challenging behaviour, please visit The Challenging Behaviour Foundation and Yvonne Newbold's website. 

6. PDA IS NOT THE SAME AS ODD, ATTACHMENT DISORDER OR CONDUCT DISORDER

Pathological Demand Avoidance is a profile of autism. Oppositional Defiant Disorder (ODD), Attachment Disorder (AD) and Conduct Disorder (CD) are not types of autism. 

Sometimes ODD is given as a diagnosis when the underlying autism hasn't been identified. Strategies suggested for ODD, AD and CD (such as stricter boundaries and consequences) can actually increase anxiety levels and have not been found to be effective in the long term (or even short and middle term!). For more reading on all these conditions, please visit my blog post 'The difference between PDA and ODD'. 

7. TYPICAL PARENTING STRATEGIES ARE NOT GENERALLY SUCCESSFUL WITH PDA 

The reason why it is so important to understand and diagnose PDA correctly is that the best way to approach and support PDA individuals is with very specific PDA approaches. 

Society conditions us to believe that there is only one way of parenting. The typical pattern is set with the adult being in charge, imposing conditions and rules on the child. In reality, our job should be to share our wisdom and experiences in order to help guide children through life. That doesn't mean that there are no boundaries for children with PDA; it just means that we have to work much harder to understand needs and enable our children to achieve their best in a society which is overwhelmingly designed for those who are neurotypical.

Believe me, if I could use typical parenting strategies for my younger daughter, I would. They have been pretty successful for our eldest girl and involve a lot less effort. Star charts, naughty step, rewards and consequences... of course we tried those methods with our youngest too, but they just didn't work for her. I do recommend others try them first - it can be one way of discovering whether you are living with a child with PDA. 

8. LOTS OF PEOPLE HAVE DEMAND AVOIDANCE; THIS IS NOT PDA

Demand Avoidance is something which everyone can show, at the point when they don't want to do something. Toddlers who don't want to be told 'no' to more chocolate, teenagers who choose not to tidy their rooms, adults who put off doing important work or making appointments, children who don't want to do PE. They can show avoidance in a variety of ways; outright refusal, procrastinating, distracting, making excuses.

This is not the same as Pathological Demand Avoidance, which is an autism spectrum condition characterised by extreme anxiety. This means that even simple, everyday activities, which a child may enjoy doing (such as going to the park, for example) become impossible to achieve because either the demand is phrased wrong, or comes at the wrong time, or is one of too many that day. I've tried to explain the difference further in my blog post Autism with demand avoidance or Pathological Demand Avoidance?

To give an indication of whether a child has Pathological Demand Avoidance, please look at the characteristics list on the PDA Society website. There's also the EDA-Q (extreme demand avoidance questionnaire) which is not a diagnostic tool but which can be used as a guide. 

9. USING THE RIGHT LANGUAGE IS KEY

There are many approaches which are suggested to help with PDA, and I've covered some of these in a previous blog post on strategies (there's one on PDA strategies for schools too). They include (but are not limited to) planning ahead, being flexible, always having an exit plan, offering choice and building a trusting relationship.

One of the most important strategies is choosing the right way to communicate. Rephrasing is vital so that demands are not direct - so instead of 'you need to...' or 'it's time for you to...', switch to 'perhaps we can...' or 'I wonder if it's possible...'. Humour works well; turning things into a game distracts and can make the task seem less urgent and necessary - 'I bet you can't do that before I've done ten star jumps' for example. 

We have often joked that our daughter's favourite word is 'no' - but only if she is saying it. We rarely use it ourselves, as it would be the cause of much distress. That doesn't mean that there are no boundaries; what it means is that we say no in a different way to soften the blow. For example 'well, that sounds like a great idea, but we might have to wait until we've saved up enough money for that' or 'I'm sorry it's not possible now but we'll make sure we can do it next week when the weather is better'. 

I can hear some scoffing at this, not understanding why it should be necessary. Shouldn't adults be setting the rules and just saying it how it is?! Believe me, if it was that easy, we'd be doing it - in fact we do, with our older daughter. With Pathological Demand Avoidance, it's just not that simple. Changing language used to be less direct can be key to keeping those anxiety levels from flowing over. 

10. CHILDREN WITH PDA GROW UP TO BE ADULTS WITH PDA

Just like the overriding autism diagnosis, Pathological Demand Avoidance is a lifelong condition. It won't simply go away or be grown out of, but can be helped by others around being understanding and flexible. It has been a huge comfort to us to hear from PDA adults and to know that the future can be rosy. 

Julia Daunt is a PDA adult who has written a book called Being Julia and her website, Me, Myself and PDA offers a real insight into what it is like to live with PDA. Riko Ryuki is a PDAer and parent to 3 autistic/PDA kids who shares great information at Riko’s PDA Page on Facebook. 

I also urge you to watch this video where Isaac Russell talks about experiences with Pathological Demand Avoidance. It's eye-opening. 

11.....

OK, I know I said ten... but I needed to add one more. Our daughter has the PDA profile and she is witty, affectionate, charming, sociable, chatty and creative, with a great imagination. She, and many others with PDA, deserve to be better understood. I believe that society can change, but only if we are educated so that we know how to help. Please share this post so that more people begin to understand!

For more reading, please see this post of mine - Books about the Pathological Demand Avoidance profile of Autism.