Thursday, 21 June 2018

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

Our younger daughter is autistic. She was diagnosed with Autism at the age of two and a half. 

This blog began the day autism was suggested to us by a paediatrician. Around a year later we stumbled across the description of Pathological Demand Avoidance on the internet and went on to read the book Understanding Pathological Demand Avoidance syndrome in children. We finally felt like we could begin to understand and help our little girl. Now I want to share those insights with others.  
faded image of toddler with arms up and text reading ten things you need to know about pathological demand avoidance
Text on image reads: Ten things you need to know about Pathological Demand Avoidance (PDA)

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). The other two known profiles are Asperger Syndrome and classic autism (Kanner's).

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 used previously in the UK and still commonly used in the USA. I suspect that when PDA becomes more widely understood over there, many more parents will find this category a better 'fit' for their children. 

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, OCD (obsessive compulsive disorder), SPD (sensory processing disorder), ADHD (attention deficit hyperactive disorder), Dyslexia and Dyspraxia can be identified in some, but not all, children with PDA. Those conditions are not autism spectrum disorder profiles; they can be present in individuals who do not have a diagnosis of autism. PDA is however, a type of autism.
Circles diagram showing autism conditions in the middle circle and related, co-morbid, non-autistic conditions in outer circle
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 them manage their anxiety so that they know what to expect and don't have to comply with demands which they find too difficult. 

'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's because they are lacking in skills. Some of those skills are teachable over time, but the fact that some are missing is an inherent characteristic of the autism diagnosis. 

4. Both direct and indirect demands cause anxiety

Most people don't stop to assess 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, all before 8 am 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 thought about. Then there's 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 if you do well and are praised, then further, more difficult work is likely to follow. 

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. Our girl mostly refuses rather than any of those actions; 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 all challenging, but not to the extent that some families have when violence becomes a regular feature.

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 individuals with PDA is with very specific PDA strategies. 

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... we tried them first with our youngest too of course, but they just didn't work. I do recommend others try them first - it's actually 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 (ahem), 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 using the correct strategies. It has been a huge comfort to us to hear from adults with PDA and to know that the future can be rosy. 

Harry Thompson is a young adult diagnosed with PDA; he has written a book called The PDA Paradox which I definitely recommend, and he also writes over on his Facebook page Harry Thompson - PDA Extraordinaire.

I also suggest reading the blogs of Julia Daunt (Me, Myself and PDA) and Riko (Riko's blog: PDA and more) as they offer a real insight into what it is like to live with PDA. 

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



OK, I know I said ten... but I needed to add one more. Our daughter has PDA 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 to understand. Please share if you want to help!

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

Image of girl in garden with text Ten things you need to know about Pathological Demand Avoidance (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. Thank you, such an informative post. I have not heard about PDA. For that matter, very little is known about autism in general.

    1. Thank you - and so true. We never stop learning here!

  2. Thank you - our daughter is autistic and your blog provides invaluable advice as to how we can support her best. When we've asked service providers about PDA they seem flummoxed, so you're super amazing - supporting parents to support kids. Thank you ❤

  3. Thank you for letting me know, comments like this are what spurs me on to do more! Happy to hear it helps x

  4. Hi my 13 year old son has PDA and we have had to learn a totally different way of parenting especially around disapline. Alot of our family don't understand that we can not raise our voice or be angry because we will escalate situations. We now talk to our son much later and say what could be done differently next time. This works as we are not putting the demands when he is already extremely anxious. X

    1. This is exactly how we have to do things too. Sadly people who don't live with it all the time tend to not see the reactions so well unless it's explained to them x

  5. Hello! Thank you for this post. It was shared on FB by an per-student of mine who was diagnosed as such. My now 21-year-old was diagnosed with PDD at around age 3, and the diagnosis was such a blessing. The PDA you are referring to is so familiar. He was known as 'the naughty child'until I started changing the way I spoke to him. I asked requesting him to do things in a sing-song voice😁 and he turned into an angel! As an adult now, we have some terrible interactions- he questions nearly every directive I give,no matter how small. He has surpassed all my expectations for his success in life, but thank you so much for sharing this and reminding me that he operates differently and I need to be gentle and not take it personally. Thanks so much for sharing. Enjoy your daughter- some of my best memories are of my magical child.

  6. Thank you for commenting - I'm just happy if it helps more people have calmer, happier lives, and the futures they deserve! x

  7. wonderfully explained simple clarity about this. Well done. I hope mote and more will learn read listen and more importantly BE PATIENT & UNDERSTAND

    1. Thank you so much for commenting - understanding really is the key to helping x

  8. Hi, Thank you for your lovely post :), We have two daughters too and have been struggling for the last 8 years with twin 1. Initially with put it down to the terrible two, but then her sister got over that stage and she continued on different levels. Over the years We tried all the different parenting techniques, that would work with her sister but not with twin 1. Talked to the school but could not see anything wrong ( the melt downs are always at home with people that she trusts), Paediatrician suggested she could be in the spectrum, but nothing to worry(talkative , healthy, no problems at school, intelligent and so on...), Always thought something was not right, Now we had our lightbulb moment with PDA, all the traits we have experienced over the years match with the PDA symptoms. Are in the process to make the school recognise this. Thank you again for your post, good to know that we are not alone.

    1. Sorry I'd missed your comment before! But lovely to hear that this post has helped x

  9. I have learned a lot tonight from your post together with the priory children's page on PDA. I am a paramedic and had never heard or come across this. I guess in my naivety I thought they were just kids being difficult. This just goes to show every day is a school day and I have learned something valuable which I am now able to pass on to my peers

    1. That's brilliant that it has reached you then, and so good to know it will help more people. Thank you so much for leaving this comment x

  10. Thank you so much for this article and most especially Isaac's interview. It has answered questions I have had or many years

  11. Thank you. I believe I am an adult with PDA and I am unable to make myself visit the dentist or doctor, and I just about manage to work. My anxiety levels are through the roof.

    1. I imagine this past year has been immensely hard for you. Hope you manage to find some good support somewhere.


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