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PDA  does it exist and is it part of the autism constellation?

25/12/2019

7 Comments

 
 PDA (Pathological Demand Avoidance - you could keep the acronym and call it persistent demand avoidance which I think would be more helpful) is a condition that is not universally recognised.  Judging by my experience of the turnout at the National Autistic Society conferences on the subject it is however actually experienced in many families

Autism and neurodiversity are contested fields with many different theories and experiences vying to be accepted as definitive.  Within that PDA seems to be currently the most disputed.  Ten years ago when I got a diagnosis ("on the Autistic Spectrum currently functioning at the level of residual Asperger's Syndrome") there seemed be quite frequent discussions on the radio questioning whether Asperger's Syndrome actually existed or if it was just an excuse used by inadequate parents for the misbehaviour of their children.

This strikes me as similar to the current attitude to PDA in that PDA is recognised by some practitioners in some areas and dismissed by other practitioners in other areas.  There is an added layer of complication in that some people who accept the existence of a condition dispute if it is part of the autistic constellation (I've used this term because I think it describes autism better than spectrum, which is often conceptualised as a 2D line going from "low functioning" to "high functioning"). Some autistic people argue that it is Rational Demand Avoidance, an assertion people who identify as having the condition strongly dispute.

So what exactly is PDA and how does it affect people?  Essentially it's an inability to comply with demands. It's generally considered to be part of the autism constellation that varies from other presentations of autism in the degree to which the person affected is unable to meet everyday demands.
 
PDA people often use social strategies to avoid meeting demands, so they appear superficially not to have the social difficulties usually associated with autism.   Most PDA people say the demand avoidance is driven by extreme anxiety, it’s not that they don't wish to do whatever is required its more that overwhelming anxiety drives them to avoid any demands.

This means that ways of interacting that are often thought to be helpful for autistic people, such as being very direct and having set rules and timetables, are unhelpful for PDA'ers.

My sense from thinking and reading about PDA and talking to people with the condition is that demands impinge on their sense of self.  The sense of agency is so shaky that it can feel as though complying with a demand obliterates the self. The level of threat felt results in any means possible being used to avoid the demand.

Autistic people have a tendency to extremes.  In relation to demands this means that some non-PDA autistic people are rule followers, happy in situations with clear rules they can adhere to. Others need to be given a reason for any demand, they will then evaluate if they think the demand is reasonable and only comply if they agree with it, such people are often rebels. Both of these extremes can lead to whistle-blowing.

For PDA people however any demand feels unpalatable.  This is not a pleasant position to find oneself in and it is made all the more difficult if one is then blamed and punished for being uncooperative.

As with other forms of neurodivergence I think the best way to address PDA is to listen to people who identify as having the condition and learning together what works best to enable them to fulfil their potential. I'm very grateful to some such people I 'met' on Twitter for commenting on drafts of this article.

7 Comments
Catherine Cook
5/1/2020 08:22:14 am

Interesting article... I’ve experienced similar feelings and I wonder how specific to autism they are.

Reply
Caroline
5/1/2020 07:58:20 pm

Thanks for your comment. I'm glad you found the post interesting
Really I think all autistic traits are human traits, there is no one thing that is specific to autism. Sometimes the question of whether a thing is specific to autism is related to the stigma of autism - people will recognise a trait they have but would rather it didn't mean they are or seem autistic. It doesn't. But it could.

Reply
Kat
5/1/2020 11:50:33 am

I've struggled with this in relation to masking , especially in the two years since my diagnosis. I always prepare very carefully for social events, rehearsing my words, putting on a suitable face and costume - even having a cribsheet of suitable conversation topics in my handbag in case my mind goes blank! It's as exhausting as any stage performance, but I think I usually manage to pull off a semblance of normality. However, even after a lifetime of doing it I'm still never sure - perhaps even less sure since my diagnosis - and I anguish for hours afterwards over how things went. What makes it worse is that I never manage (or dare) to unlock the real conversation I want to have with people about the things that are important to me. I've realised that although the masking behaviour protects me, it also compounds the loneliness and isolation I feel. Increasingly I wonder if I would be better off avoiding social occasions altogether, as though I crave interaction it's invariably unsatisfactory and upsetting. Maybe it's a matter of finding a better balance (or new friends!), but it does seem that masking is one area where practice does not lead to an improved outcome - just increasing despair at the gulf between pretence and reality and the impossibility of true connection.

Reply
Caroline
5/1/2020 08:05:17 pm

It looks to me as if you are more responding to the previous post about masking (Mailchimp sent out an email about this today, initially I thought it had gone rouge, but actually I had neglected to press a button somewhere)>
I'm sorry and surprised to hear that you have found social situations more stressful since your diagnosis. I had the reverse experience. Knowing I'm autistic finally gave me a reason why I kept committing faux pas and allowed me to stop blaming myself thereby taking the pressure off, and allowing me to give myself permission to make "mistakes". Paradoxically this has meant I make less mistakes because I spend less time worrying about what I might do wrong and more paying attention to the other people.
I think initially what helped the most for me was meeting other autistic people so there was a level social playing field. I wonder if you are in a situation where that would be possible for you.

Reply
Kat
5/1/2020 08:39:25 pm

Yes, that's me, confused as usual, but dutifully responding - albeit inappropriately... Appreciate it's different for everyone. Guess I'm on my own with this one!

Caroline
5/1/2020 09:51:53 pm

Kat, please don't feel you were the one responsible for the confusion, you got an email saying the post was about Masking, so you responded to that. It was my fault the email was sent out in error.

Caroline
5/1/2020 09:56:33 pm

Plus you're not on your own with this, lots of people mask, and although for some it gets easier once diagnosed or identified as autistic that won't be the same for everyone.
In terms of "improving with practice" my guess is that the performance element of masking might improve with practice, but unfortunately it doesn't make the person behind the mask feel any better because generally they'd like to be appreciated as their real self rather than the pretend one.




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