Thursday 21 June 2018

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

Our fifteen year old 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 would like 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

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; more often shortened to 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  Archives of Disease in Childhood (Newson E, Le Marechal, K and David, C. Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders. Archives of Disease in Childhood 2003; 88: 595–600).

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).
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 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 PDA individuals 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 more 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 fighting or fleeing; 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 occurrence.

It is important to keep everyone safe in the moment, but to 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, Newbold Hope

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 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, rewards and consequences... of course we tried those methods with our youngest too, but they just didn't work for her. Trying these methods and scratching your head as they fail to work 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 most people can feel and exhibit, when it comes to the point at which 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. It could be because the demand is phrased wrong, or it 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?

At the time of writing, the characteristics/key features of Pathological Demand Avoidance are described on the PDA Society website as follows:
a. Resists and avoids the ordinary demands of life
b. Uses social strategies as part of the avoidance
c. Appears sociable on the surface, but lacking depth in understanding
d. Experiences excessive mood swings and impulsivity
e. ‘Obsessive’ behaviour, often focused on other people
f. Appears comfortable in role play and pretend, sometimes to an extreme extent (this feature is not always present)
The EDA-Q (extreme demand avoidance questionnaire) can be used as a guide although it is important to note this is not a diagnostic tool


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 actions 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 the one 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 'we are sorry that is 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?! If it was that simple, we would be using these typical parenting approaches - in fact we have done, with our older daughter. With Pathological Demand Avoidance, it's just not that simple. Changing language we use 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. 

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 as a PDA person. Riko Ryuki is a PDAer and parent to three autistic/PDA kids, and 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 that reviews Books about the Pathological Demand Avoidance profile of Autism
The most comprehensive source of current information about Pathological Demand Avoidance is the PDA Society website.


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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29 comments:

  1. Thank you, such an informative post. I have not heard about PDA. For that matter, very little is known about autism in general.

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

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  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 ❤

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

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  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

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    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

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  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.

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

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

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

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  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.

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

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  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

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    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

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

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  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.

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    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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  12. Thank You for sharing i have some additional informations:
    -Pathological Demand Avoidance (PDA) is a condition that is characterized by a avoidance of everyday demands and activities.
    -PDA is believed to be on the autism spectrum, but it is a separate condition with its own unique set of symptoms.
    -PDA is often misdiagnosed as another condition, such as OCD or ADHD.
    -PDA can cause significant distress and disruption in everyday life.
    -PDA is a relatively new diagnosis, and there is still much to learn about the condition.
    -There is no cure for PDA, but there are treatments that can help manage the symptoms.
    -PDA is a lifelong condition, but with proper support and treatment, people with PDA can lead happy and fulfilling lives.
    -PDA is a hidden disability,

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  13. Just back from a school Disciplinary Committee meeting re our PDA son. Anxiety levels high when out of control hence when fell over because he was pushed and laughed at = not in control= high anxiety = behaviour issue. Governors educated a little bit about this today. Thank you.

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    1. Ah great, thank you for letting me know it has helped a bit, and thank you for passing that learning on :)

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  14. I have no words. I am a single parent to a nine year old son. I am in the middle of a divorce and things have been crazy the past three years. I have always had a niggly feeling that I am missing something with my son. He is the most amazing little boy - very empathic, loves cuddles but only with certain people (he overwhelms me with kisses and cuddles at times, but is not always receptive if he is not asked to if he doesn't feel close to someone, it took him years to hug his closest friends whom he knew since a toddler), he does well academically. But he has high anxiety. You wouldn't say so looking from the outside, but I see it. I see him struggle to do simple things and have this battle with being obedient but just not being able to do it. I heard about PDA maybe 2 weeks ago and it felt like “Aha!” this makes sense! From an outside point of view I have been a permissive parent. Seldom used consequences to discipline, rather I would talk to him and he would generally get it and be willing to work towards a different solution or behaviour, even as a toddler. But over the past two years, with circumstances being different and trying to work and homeschool I have “needed” a stricter routine. And chaos ensued. I have been so frustrated thinking, “But you can do this! You have been before why are you fighting me so hard now?” PDA explains that. Over the past two weeks I have reverted back to my normal style - giving him much more choice, giving warnings when a transition was about to take place and letting him start his day as slowly as he wants. And hey, presto! Less fighting, and we actually got some school done! He even started talking more to me. Over the last two years I have felt that we were just drifting further and further apart and I couldn't get why. We watched a video of a young man explaining what PDA is like for him last night and my son exclaimed, That's like me! And afterwards, “That video made my heart smile. I didn't know there were other people who felt like me.”
    I was in tears and been teary since.

    I don't know what it will look like going forward as I have to find a way to keep providing a safe space for him while being able to work as well, but it has given me hope.
    We probably won't get a formal diagnosis as it is too expensive, but so many of the strategies that I have read up about over these past two weeks are how I have been parenting him generally, although at times I have defaulted back towards traditional parenting or imposes stricter rules/routine. But it always blows up.

    Sorry for the very long post, but every post I read is giving me hope after a very difficult and traumatising three years. And it calms my fears about my son just having violent tendencies. As well as confirms my feeling that he isn't a “naughty child” but rather he struggles.
    He is so honest and I feel I have failed him these last two years, but we are going to find a way forward.

    Thank you for sharing your thoughts, knowledge and experiences!!!!!

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    1. oh gosh, lovely to hear this, that you had your lightbulb moment. And thank you for the thanks!

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  15. Thank you for this! I stumbled across your post when I saw the term and did a search to find out more. I’m a preschool teacher with a little boy who is lovable, smart, and hilarious…except for when he is holding us all hostage. I have tried to ask my director to have him evaluated for being on the spectrum, but she refuses because she doesn’t think that is what is going on, and the issue is just how mom and I are handling him. 😫 This make much more sense as there are some mornings he comes in with a certain look, and I know he is going to have a tough day. If he has had too many commands before coming to school and has reached his limit, this would make sense!

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    1. Yes! It's all about the demands, and overload of demands and sensory experiences, and anxiety.

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    2. I’m 41 years old and today Dec 20 2023 in a session with a new therapist she drops this bomb. I was initially like what the heck did you just say… But some things resonated so I googled PDA and stumbled upon this page. Holy shit ! Thank you for sharing your experience and daughter’s story. First let me put your mind at ease I have had a very happy and successful life with ups and downs with addiction and relationships but I’m still married over 10 years and have always functioned extremely well. However with multiple experiences with addiction, sobriety, anxiety, and “depression “. And also being completely undiagnosed for any mental health problems my coping mechanisms are no longer effective. The advantage I had that led me to be successful but also my demise was I was introduced into leadership at a very young age in both sports and career. Anyone who has experience with PDA probably understands we have an incredible amount of drive and resilience when someone is fueling that fire properly. I have become so aware of this issue that I have considered hiring someone to facilitate this in my life. Most people will not understand how the phrasing of words are interpreted differently by people with pda. It’s the equivalent of saying. There’s a100% guarantee you will never be able to speak Japanese. Or saying I don’t think you will be fluent in Japanese in 1 week but you can probably speak some by then.

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    3. Ah, I love your therapist! Sounds like they have understood. I can totally see how leading is a great path for PDAers, and yes I always say language/communication can make a huge difference. We don't always get it right, but we try :)

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  16. Thank you for this post and spreading more awareness. Im a 28 year old woman, and recently got the ASD diagnoses (PDA isnt diagnosed in the Netherlands) after a life so far of many issues amd being misunderstood, and masking. My mom, who was the only one that intuitively knew amd saw me the way it was. Without understanding, but she felt me, and my struggles. After she died 8 years ago i struggled to keep up appearences but i felt this was the most important thing ever. Finding out about PDA has been mind blowing for me. I use the strategies that you use with your daughters on myself (or i try) and it helps. Its still hard. I feel sad that i dismissed myself i shut myself and my feelings out (with substance, eating disorders, maladaptive daydreaming) for so long. I thought it was what needed to be done to live and that everyone had implosions of anger when getting compliments. But that i was just the only one sometimes unable to control that. Finding iut that other people actially enjoy certain things, and dont just do it because ‘we have to’ blows my mind. Sorry for this whole story. Thank you for all the information and. Its touching to read how you look at it and how you are so invested and loving. I am forever grateful for my mom being so gentle and keep seeing that i was trying my best. As an adult way more than as a child. You dont need to read that from me ofcourse, but it is amazing and full of love to read your journey and tips etc. Thank you!

    Charlotte

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    1. Ah thank you, your comment means a lot to me because it's lovely to hear that I've helped others in some small way. Happy you have had a loving mum too and I hope you've managed to find others who understand and love you for who you are x

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