PDA

TheCatWoman said:

PDA? Is this becoming another stick to beat ASC people with?

Almost certainly........but the term PDA also seems to get abused, undermined, misunderstood and manipulated by a definable sub-set of ASC people too!  Passive aggressive bias appears to be quite common amongst many "talking heads" on this subject.

The NAS has recently been driven to REAFFIRM their past content and approach to its handling of the PDA topic.

They did so by simply stating that;

"We have reviewed our content and approach to be in line with the evidence"

I interpret this to mean that they evidently deem their previous training, conference events and website content surrounding PDA to be sound.  I suppose others can draw their own conclusions.....or spin this content to suit a different agenda, if they so choose?

Whilst I refuse to get drawn into converting this COMMUNITY FORUM into a formulaic and hubristic "advice centre" for amateur curators of their own selected facts, figures, biases and links, it seems necessary to inject some balance back into this thread by including a screenshot of a UK society that actually does specialise in this topic.  Anyone interested can simply Google the name and be connected to their website.

Beware of people who try to curate and present THEIR version of  "understanding" as 100% fact.

98% (facts) + 2% (divisive personal comment slid in on the sly) =  an agenda!

Unknown said:

Beware of people who try to curate and present THEIR version of  "understanding" as 100% fact.

98% (facts) + 2% (divisive personal comment slid in on the sly) =  an agenda!

Unknown said:

I suppose others can draw their own conclusions.....or spin this content to suit a different agenda, if they so choose?

Unknown said:

a formulaic and hubristic "advice centre" for amateur curators of their own selected facts, figures, biases and links

You are continuing to troll me. Please stop. 

My only “agenda” is to share information and to help people. Yours currently seems to be to harass me. My personal opinion that PDA is an interesting and tricky topic is hardly "divisive". What little else I said in my previous post (which you also downvoted) is simply factual and accurate.

Unknown said:

The NAS has recently been driven to REAFFIRM their past content and approach to its handling of the PDA topic.

Unknown said:

I interpret this to mean that they evidently deem their previous training, conference events and website content surrounding PDA to be sound.

You are entirely mistaken - although I can’t help wondering whether you also posted these comments as a provocation / further trolling, rather than with any serious belief / intent.

Back in Sep 2021, the NAS had two advice and guidance articles in the Diagnosis section, one for autistic adults, the other for parents and carers. They were titled: “Pathological Demand Avoidance (PDA)”. 

Whilst that version of the article flagged that a) the existence of PDA and its fit with ASD are both widely debated, and b) there is no conclusive, evidence-based research, it nevertheless still used a lot of language that people could have taken - and some did take - as meaning that the NAS supported the concept.

It's opening sentence, for example, was: 

“ Pathological demand avoidance (PDA) is a profile that describes those whose main characteristic is to avoid everyday demands and expectations to an extreme extent”.

By Oct 2023, the article had been replaced with one titled “Demand avoidance (sometimes known as ‘PDA’)”. It had also been moved from the “Diagnosis” section to “Behaviour”.

By contrast, this version now opened with:

“A persistent and marked resistance to demands is a characteristic experienced by and observed in some autistic people. It is sometimes labelled as Pathological Demand Avoidance (PDA), but there is debate about the evidence for and usefulness of this label.”

The overall way in which this version of the article was written made it much less easy for any reader to conclude that the NAS either fully supported or disagreed with the concept. It also included a clear explanation of how PDA is a very contentious subject, including, for example:

“There are stark disagreements within the autism community (which includes autistic people, their families and allies, autism researchers, health care professionals, education professionals and more) about the validity and usefulness of the concept of PDA” 

Today, the latest version of the article remains within the Behaviour section. It is now only titled as: “Demand avoidance”.

The opening paragraph now makes no mention of PDA at all:

“A persistent and marked resistance to demands is a characteristic experienced by and observed in some autistic people. It can impact essential needs like eating and sleeping, and expectations such as going to school or work, and has implications for diagnosis and support. People with lived experience have suggested strategies for self-management and support.” 

You can read the rest of it yourself, but it includes the NAS’s views that:

“no research has found strong evidence for the group of traits proposed for PDA or tested the validity or usefulness of Newson’s theory in clinical practice”.

“There are stark disagreements within the autism community … about the validity and usefulness of the concept of PDA. One point on which there is broad agreement is that more and better research is required.”

The paragraph about the NAS’s involvement in the PDA debate was lengthened specifically in order to clarify that people had believed the NAS supported the concept to a greater extent than the limited research supported: 

“This has created a belief that the National Autistic Society accepts the concept of PDA, and its relationship to autism, to an extent that goes beyond the evidence, which has been referenced in the debate about PDA. We have reviewed our content and approach to be in line with the evidence.” 

The first change in the article had prompted a Change .org petition that gained almost 6,000 signatures in just over one month. The petition was titled “National Autistic Society to remove harmfully biased PDA information from their website”. (I haven't linked to it simply because it's a petition).

The petition’s description includes such phrases as: “NAS has no right to favour PDA sceptics”. They were only slightly mollified by the subsequent second change in the article, saying that “They [NAS] removed only a few inflammatory statements”, but still accused the NAS of being “misleading and invalidating” and claimed that it “favours the views of PDA sceptics“.

Over the last few years the NAS has demonstrably and significantly revised its advice article about demand avoidance to be more clearly evidence-based, which includes being clearer that its own position is, in essence, currently non-committal pending further research - rather than seeming to support or promote the concept of PDA. If you were to look, you would also find similar, consistent changes to their training and conference content - as they also explained.

Finally, the existence of the PDA Society (which you mentioned in your post) is no secret. There has been a link to its website in every version of the NAS’s demand avoidance article, including the current one.

Who is the troll and/or who is engaging in trolling activity here?

I note that this is not the first time that you have made this accusation of trolling when anyone finds the time and energy to flag one of your skilfully authored posts that they dislike, for whatever reason.

My downvote of your “piece” was motivated by the knowledge that some members of this community (including a few in this forum) do suffer with PDA (or whatever they may choose to call it) and, in my opinion, you had presented a very biased view of the topic but dressed it up as a “balanced informative.” I merely responded with my opinion on the matter.

Is that trolling?

Whilst you opened your post with acknowledging that PDA is a tricky topic, you then went on to “select” items of research that imply those people are more likely to have emotional instability and/or antagonism, rather than ASD. Moreover, you also “slipped in” your comment about whether PDA even exists at all.

Is that trolling?

You are choosing to post in this forum in the style and format of a member of the moderation team, and indeed, have been mistaken as an “official” NAS contributor here, on occasion. There are very good reasons why the actual moderators here are devoid of personal bias in their posts and must adhere to different rules than us mere mortal contributors.

I have absolutely no issue with anyone saying anything on this forum (within the rules) and I hope you can extend me that courtesy too, without resorting to calling me a troll. That is offensive.

Apologies to you TheCatWoman.

TheCatWoman said:

Well thank you guys for derailing a thread with your personal spat, luckily it was probably just about done anyway

It’s the last thing I wanted to happen. And I sincerely apologise to you.

However, I do feel that I had every right to defend myself from Number’s false, personal allegations. This could all have been avoided. But that wasn’t within my control. 

Well thank you guys for derailing a thread with your personal spat, luckily it was probably just about done anyway

Unknown said:

Who is the troll and/or who is engaging in trolling activity here?

You have singled me out and harassed me repeatedly. Your pattern of behaviour, as the antagonist, is clear enough to me.

Unknown said:

My downvote of your “piece” was motivated by the knowledge that some members of this community (including a few in this forum) do suffer with PDA (or whatever they may choose to call it) and, in my opinion, you had presented a very biased view of the topic but dressed it up as a “balanced informative.” I merely responded with my opinion on the matter.

I don't mind being downvoted if people feel they want to do that. But I do find it hard to understand when I'm only presenting factual information and have invested considerable time, effort, and care in doing so.

I haven't "dressed anything up" as anything. I posted to explain a) that it's a contentious subject and b) why, along with providing some links so that people can learn more if they wish to. I have not expressed or shown any bias.

Unknown said:

you then went on to “select” items of research that imply those people are more likely to have emotional instability and/or antagonism, rather than ASD.

I didn't "select" the paper that I quoted from for any nefarious or biased reason. It's cited in the article that I linked to, is recent (October 2020), and it helps to explain why PDA is contentious - these are the only reasons why I included the information.

You can read the whole thing here, if you like, by the way.

In tracking it down again just now, I accidentally (ie without selecting or searching for it specifically) found another paper that's even more recent (March 2023). It's described as follows:

"This article reviews the current state of research and discusses the questionable validity of pathological demand avoidance as an independent diagnostic entity."

The "Highlights" (their word) include:

"PDA involves behaviours suggestive of clinical syndromes other than autism."

"High attention deficit, antagonism, and low emotional stability predict PDA".

And the abstract says:

"This paper concludes that PDA is not a diagnostic entity nor a subtype of autism; rather, it is a behavior profile that can be associated with adverse illness progression and unfavorable outcomes. PDA is one feature in a complex model. We must consider not only the patient’s characteristics but also those of the caregiver and their psychopathology. The reactions of the interaction partners as well as the treatment decisions play a key role play for the affected individuals. Substantial research is needed concerning the occurrence of the behavior profile PDA in diverse disorders, treatment options, and treatment responses."

Source: Pathological Demand Avoidance: Current State of Research and Critical Discussion

(I've also shared this because it's also relevant and recent; not because I have any bias).

Unknown said:

Moreover, you also “slipped in” your comment about whether PDA even exists at all.

That was just a factual observation, nothing more: whether PDA exists at all (whether as a condition or as an autism profile) is a big part of the reason why the subject is contentious and can lead to fiery arguments between people on opposing sides of the argument. To be clear: I'm not on either side of it. if you want to find someone to argue with about it, that's not me.

My comment was simply a quick reminder of the open nature of that question (in terms of research findings and medical consensus) in the context of considering which condition(s) might predict it. Nothing more. 

If you have any issue with the content of any of my posts, then you should report them accordingly, including emailing the community manager if you feel it's appropriate.

But please stop harassing, insulting, and criticising me, and making snide comments about me - whether about my posting style, providing links, or anything else.

Unknown said:

Who is the troll and/or who is engaging in trolling activity here?

You have singled me out and harassed me repeatedly. Your pattern of behaviour, as the antagonist, is clear enough to me.

Unknown said:

My downvote of your “piece” was motivated by the knowledge that some members of this community (including a few in this forum) do suffer with PDA (or whatever they may choose to call it) and, in my opinion, you had presented a very biased view of the topic but dressed it up as a “balanced informative.” I merely responded with my opinion on the matter.

I don't mind being downvoted if people feel they want to do that. But I do find it hard to understand when I'm only presenting factual information and have invested considerable time, effort, and care in doing so.

I haven't "dressed anything up" as anything. I posted to explain a) that it's a contentious subject and b) why, along with providing some links so that people can learn more if they wish to. I have not expressed or shown any bias.

Unknown said:

you then went on to “select” items of research that imply those people are more likely to have emotional instability and/or antagonism, rather than ASD.

I didn't "select" the paper that I quoted from for any nefarious or biased reason. It's cited in the article that I linked to, is recent (October 2020), and it helps to explain why PDA is contentious - these are the only reasons why I included the information.

You can read the whole thing here, if you like, by the way.

In tracking it down again just now, I accidentally (ie without selecting or searching for it specifically) found another paper that's even more recent (March 2023). It's described as follows:

"This article reviews the current state of research and discusses the questionable validity of pathological demand avoidance as an independent diagnostic entity."

The "Highlights" (their word) include:

"PDA involves behaviours suggestive of clinical syndromes other than autism."

"High attention deficit, antagonism, and low emotional stability predict PDA".

And the abstract says:

"This paper concludes that PDA is not a diagnostic entity nor a subtype of autism; rather, it is a behavior profile that can be associated with adverse illness progression and unfavorable outcomes. PDA is one feature in a complex model. We must consider not only the patient’s characteristics but also those of the caregiver and their psychopathology. The reactions of the interaction partners as well as the treatment decisions play a key role play for the affected individuals. Substantial research is needed concerning the occurrence of the behavior profile PDA in diverse disorders, treatment options, and treatment responses."

Source: Pathological Demand Avoidance: Current State of Research and Critical Discussion

(I've also shared this because it's also relevant and recent; not because I have any bias).

Unknown said:

Moreover, you also “slipped in” your comment about whether PDA even exists at all.

That was just a factual observation, nothing more: whether PDA exists at all (whether as a condition or as an autism profile) is a big part of the reason why the subject is contentious and can lead to fiery arguments between people on opposing sides of the argument. To be clear: I'm not on either side of it. if you want to find someone to argue with about it, that's not me.

My comment was simply a quick reminder of the open nature of that question (in terms of research findings and medical consensus) in the context of considering which condition(s) might predict it. Nothing more. 

If you have any issue with the content of any of my posts, then you should report them accordingly, including emailing the community manager if you feel it's appropriate.

But please stop harassing, insulting, and criticising me, and making snide comments about me - whether about my posting style, providing links, or anything else.