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PDA

TheCatWoman

I get why this is an issue, having been on the recieving end of it at times, it's extremely annoying and often feels manipulative. But, when does needing time to think about something become PDA? Is this becoming another stick to beat ASC people with? There are quite a few things that I want time to think about, to gestate an idea, I don't want to be bounced into something, because of anothers impatience, or because they're at the other end of PDA and are of the "no sooner done than thought about" type.

The more I read about PDA the more it seems that NT's are using this as a way of bullying people into doing things they don't want to, haven't had time to think about and are generally unsure of, all in the name of needing a descision. Often it seems that naming someone as having PDA, means that the impatient NT gets to have thier way, by negating the wishes of ASC people, as far as I can see they only people who benefit from this are NT bullies. Another tactic I've noticed is asking the same question over and over again, in the hope that you will give the "right answer" which is to agree with them.

So is this really that big a problem, or is it being overblown and turned into a stick to beat people with?

Parents
  • 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!

Reply
  • 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!

Children
  • in reply to Deleted User
    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.