Pathological demand avoidance?

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Does anyone else relate to the traits of this syndrome? It seems to mostly be a "thing" in the UK, but obviously people everywhere in the world can have these traits. You can find a test here: https://dragonriko.wordpress.com/pda-test-for-adults/

I related strongly to certain of the characteristics, in particular the fact that accomplishing tasks becomes more difficult when other people know I am trying to complete them, or when I have to check in with someone about my progress, or when there is otherwise pressure to complete the tasks. I also relate to the fact that even setting goals for myself can make them more difficult to accomplish, and often once I choose to do something, I then realize I wish I were really doing something else.

The problem I see with PDA is that it's defined in a way that practically says "one has THESE traits, but NOT Asperger Syndrome or autism". In particular, it references a focus on people as opposed to things, an ability to mask, etc. When I first read about PDA I noticed these characteristics, but I knew that not everyone will a "textbook case" of anything. I know I don't have all the traits of AS even though I certainly have it. However, after interacting with a bunch of people with PDA online (as opposed to just reading descriptions), I have come to the conclusion that a great many of the people who claim to have PDA do in fact fit this profile, at least the most vocal ones. They come across as being neurotypical except for these specific demand avoidance traits, to the point where it comes across as "I'm too normal to be a 'real' aspie, so I'm going to call it PDA".

Note that by no means does it have to be this way. The trait of finding it difficult to work within a structured framework (and this at times conflicting with a need to have things spelled out clearly) can be there with or without more "classic" autistic traits such as "nerdy" interests and focus on objects rather than people. The mental strategies to work on overcoming this are valuable with or without more typical aspie/autistic traits. So I feel this does a disservice to the recognition of these issues overall.

Interesting post. Pda was our gateway to autism. It was the increasing absolutely crippling demand avoidance and fitting the pda profile very well that made us aware that our daughter might be autistic. She is a veteran masker. However, once we have become aware that she is autistic and moderated our environment massively and how we interact with her and what we expect and don't expect (in fact taking away all but the most essential demands) and giving her much more freedom to self regulate....her pda traits have gone down. Now the way she presents is much more in line with high functioning autism or asperger's.

Now she is a much happier, much "stimmier" (if that is a word!) little girl with clearly defined special interests and far less demand avoidance. So I wonder if to some extent the traits of pda can also come out if autism is mismanaged or undetected and it then gets to a boiling point where the extreme demand avoidance and crippling behaviour of pda kicks in?

Saying that I have been to conference with other pda-ers and their kids clearly had defined pda from a very early age which wasn't as dynamic as what we have experienced.

Note that by no means does it have to be this way. The trait of finding it difficult to work within a structured framework (and this at times conflicting with a need to have things spelled out clearly) can be there with or without more "classic" autistic traits such as "nerdy" interests and focus on objects rather than people. The mental strategies to work on overcoming this are valuable with or without more typical aspie/autistic traits. So I feel this does a disservice to the recognition of these issues overall.[/quote]

^^

On second though, can you possibly explain what you mean here? My brain is all over the place at the moment as we are 10 days away from assessment day and I really want to make sure I understand what you mean here. Thanks.

Scored very high on the PDA (45) but also on the Autism test along with it. (36). Is it possible to have HFA with a lot of PDA features? Diagnosed HFA.

Welp, I had never even heard of PDA but I just scored pretty highly on the test ahaha. Curious, I am sure information like this would have helped my parents dramatically, apparently I was an impossible child. They always said I was a teenager from the age of 2 ahaha.

^^

You can't have PDA without autism. PDA is considered an autism spectrum disorder. It was 'discovered' in the 1970s by Elisabeth Newton in the UK.

To my knowledge, in the UK the diagnosis one gets is usually ASD with demand avoidance or PDA or occasionally just 'PDA' as a standalone diagnosis, the standalone diagnosis would still mean you had ASD with it though as PDA is part of the Autistic spectrum.

I don’t like the concept—but I exhibit some of the traits.

Neurotypical adolescents have a tendency to exhibit this sort of thing.

I fully expect my report to come back and say I have PDA ( I scored 33 on both sets of questions ). Some of the questions my ASD assessor quizzed me on focused on manners and my politeness - it seems like almost OCD scrupulosity traits which gives a strange combination with PDA. OCD & PDA are very conflicting , no wonder I'm a mess

What I mean is, the challenges around structure described in the diagnostic criteria can occur in someone who is otherwise autistic or not. Whether someone who has the arcane, atypical interests and lack of interest in people that is typical of people with AS, or not, one can still learn from others' attempts to work around these challenges. Therefore, I don't see the need to make a disorder that is specifically "people with challenges around structure/demands but not AS". If anything the opposite is true, that people with both face unique issues that people with just AS don't.

By "challenges around structure", I mean the fact that the mere presence of structure and guidelines "stifles" you and makes it harder to get things done, in a way that is purely in the mind. The way I've explained it to people is that it's one thing to be able to "think outside of the box", but another when the mere perception of the existence of a box makes it difficult to even get started, to a degree that's out of proportion to the objective "confining-ness" of the box.

And I wholeheartedly agree with you, these issues respond more to supplements/medication/CBT-type interventions than the core features of autism do (and on the flip side are more worsened by gut issues, autoimmune problems, etc.). In particular, raising serotonin can lessen PDA-type issues considerably, not because serotonin is specifically an "anti-PDA chemical" but because it reduces mental blocks of all kinds. And that's what it really is, a mental block, in the same sort of vein as the much better known "writers' block", where the mere thought of having to write stops the flow of thoughts, and similar to OCD where people can't bear to touch door knobs or whatever. Having to get something done by 3 PM the next day really doesn't make the task harder if it would only normally take two hours anyway.

Last edited by biostructure on 28 Jan 2018, 6:07 pm, edited 1 time in total.

Scored mid-range on PDA (27/50), higher on ASD (28/40).

I definitely see some of the patterns in my own life (ultimately they're what's driving my potential diagnosis), but the name and concept are...less than helpful. I'm in a highly moralizing field and am already suspected of being "willful" due to my tendency toward avoidant shutdowns when overstressed. If I end up with this diagnosis, will take much more work to explain over generic ASD or PDD.

My results: PDA - 33, ASD - 34.

I had an idea already that I fitted the PDA description, as I'd looked into it a little already following some posts on another ASD forum. Since my ASD diagnosis, I had understood and described these traits as impairments to my Executive Functioning and/or consequences of other autistic traits. I haven't seen anywhere yet explaining PDA in terms of underlying cognitive/perceptual impairments, which leaves me unsure whether PDA is supposed to be equivalent to these other explanations or if some other mechanism is suggested.

If it can be shown that these particular traits commonly occur together, and there is a cohort of people who can benefit somehow from having this particular set of traits identified, I guess it could be beneficial. However, even if that were the case, I still think that the name is very poorly chosen. I feel that, to most people, the word "avoidance" has too many connotations of being wilfully uncooperative, and the word "demand" will be read as "other people's demands" despite the assurance that our own desires may be equally subject to the same problems.

I think the important thing to bare in mind with pathological demand avoidance is that, while it sounds quite official and clinical, due to it not having very good definitions or (maybe therefore) evidence, it isn't clinically recognised by official health bodies. I trust the experts in their fields unless I have good reason not to and I consider this to be too wooly to really have good meaning.

^ I have not been Dx with PDA but reading a comment like this makes me feel cross and I don't know why ( it's not personal towards to the poster ) , it's not like it's my theory - what is wrong with me

^^ me too, and it is not towards the poster, but there is a lot of ignorance of pda, and that ignorance is reminiscent of overall ignorance towards autism and neurodiversity in general.... Sorry want to spell it out further than I am not suggesting anyone here is ignorant - it is just until you have seen PDA on a day to day basis and the hours and hours of crippling demand avoidance that you can't get around no matter how you try... It feels quite real!

And I agree it has a stupid name and is its infancy as a disorder but that doesn't mean it is not real! Also, there are several districts in the U.K. that do clinically diagnose pda. And there are several people who have pda as their official clinical diagnosis. There is a whole centre dedicated to diagnosising PDA - the Elizabeth newson centre. Think of it this way, it is only 30 years old as a diagnostic category, things move very very very slowly.

I think another thing that people keep missing is that PDA is now classed as an autism spectrum disorder. I can't remember when this happened, I can look up the year, but that means you can't have PDA without also having autism.

I once saw an article about it and thought I related to it until I decided to read further into it and I read a couple blogs about it and decided I didn't have it. I don't get abusive and get into fights and create drama and I never got kicked out of school as a child. PDA sounds a lot like ODD and look very much the same it wouldn't surprise me if kids get diagnosed with that disorder because of PDA only being recognized in the UK.

Yeah I get irritated sometimes or get anxious when I have to do something but I don't think it interferes with my life and it could just be anxiety and problems with transition and I just get cranky and that's it and I know that might make it hard for others around me but that is it, but I don't rage and scream and hurt others and hit and throw things like I have seen on the videos about kids with PDA. But I still don't refuse to do it like those kids do so I say it doesn't interfere with my life. I can still work. Work is full of demands. You have to do this, have to do that and it's ironic because autistic people love routines but PDA would contradict that because those routines would be a demand.

I got 31/50 on the PDA test and 28/40 on the autism one.