Monday, December 2, 2019

"Pathological demand avoidance" or needing to be free?

"Pathological demand avoidance" (PDA) is the name of a life-long neurological condition.


The term was coined by Professor Elizabeth Newson, who first identified the condition in the 1980s.
In addition to the trait of pathological demand avoidance, PDA entails:
High anxiety, control-need, use of social strategies, sociability, mood swings, comfort in fantasy & role-play and obsessive, often people-focused behaviour (link). 
And also:
Disregard for social hierarchy, masking, love of novelty, dislike of routine, intolerance of uncertainty, creativity, quirky sense of humour, and (not always) a drive to rename people, animals and things.
PDA Classification
PDA was initially classed as a pervasive development disorder, but reclassified as an autism spectrum condition after the spectrum's definition was broadened in 2012 to include any neurotype featuring social communication differences and rigid thinking. You can read more about the history of PDA and its classification. There is further information about the history of PDA on PDA Society's website (link).

Contention within the PDA community over the condition's name
The name "pathological demand avoidance" is, however, contentious amongst adult PDAers:
  • Some are fine with it.
  • Some hate the term "pathological".
  • Some believe this name misrepresents the condition.
For my own part, I started off fine with the name, but have since come to question it's appropriateness. I'll explore the three stances (the name's OK; the "pathological" part of it is bad; and the whole of it is misleading) in this blog post, which includes comments from fellow PDAers (quoted with their consent).

1) Those who are fine with the name
Some of us argue that "pathological demand avoidance" is an apt name for our condition. They say that changing the name would take away the small amount of recognition PDA has so far achieved. Furthermore, PDA Society would have to change their name.

Julia Daunt, a PDA advocate, who's PDA was diagnosed by Professor Elizabeth Newson when she was a child, says: 
The name is the name. End of. No debate to be had in my opinion. To change the name would cause a backwards step and would create confusion. It would also be disrespectful to Liz [Newson] in my opinion. 

Also Pathological covers it perfectly. People need to stop being silly over the name and focus on the bigger picture - raising awareness!
Fellow adult PDAer and advocate Riko Ryuki says simply:
I agree with Julia
2) Those who hate the term "pathological"
Other members of the PDA community are strongly opposed to the term "pathological" because of its negative connutations, and refuse to have the label applied either to themselves or to their children.

The alternative name "extreme demand avoidance" was put forward as a more acceptable term (link) and promoted by researcher Liz O'Nions who developed the EDAQ (extreme demand avoidance questionnaire) to measure PDA traits in 2013 (link). Some PDAers, such as Kamala McDaid prefer this:
I prefer “extreme demand avoidance” in some ways because some people think “pathological" means that it’s a mental health condition/illness which ASD and all it subtypes aren’t, so changing the name would stop those people thinking that we were “mad in some way ”
The alternative term "EDA" has, however, been vehemently rejected by other adult PDAers. Some, myself included, argue that "extreme" gives the impression of a lifestyle choice (like enjoying extreme sports) and fails to convey the hard-wired, involuntary nature of our avoidance. Jenny muses:
I don't like EDA either I'm afraid. But I agree the word pathological is bad. It's like 'personality disorder', a horrible term.
Others, such as Carrie Prior are attached to the acronym PDA, but not the word "pathological":
I dislike the word Pathological, as it tends to be negatively associated with the term Pathological Liar, something that PDA-ers are definitely not. 
 Kamala McDaid, echoing Julia Daunt, goes on to say:
But as PDA is a LOT more than just demand avoidance, and in someways the demand avoidance is a “symptom" of our anxiety and need for control, EDA still doesn’t explain the condition any better than PDA, but I am not sure of what could be an alternative and at least PDA is starting to be recognised by experts, professionals and the public and a name change might undo some of the great work already done by advocates and those with the condition, and delay the understanding and acceptance by the majority that we need.
Adult PDA blogger, Emily Wilding, muses in a post entitled what is demand avoidance and when is it pathological?:
Pathological. I know it sounds awful, and it does because we associate it with things being wrong or diseased in some way, and it can mean this. But pathological also means "being such to a degree that is extreme, excessive, or markedly abnormal" (Merriam-Webster Dictionary). It simply means in this case that the demand avoidance is atypical. Whilst I don't like the fact that the PDA neurotype is named after the demand avoidance that is experienced by the PDAer, I do agree that the demand avoidance experienced in PDA is extreme, excessive and completely different in nature to other demand avoidance, which is where the huge misunderstanding comes.
3) Those who believe the name misrepresents the condition.
In the quote above, Emily Wilding expresses ill-ease at our neurotype being named only for our avoidance. It can be argued that the phrase "pathological demand avoidance" is misleading because it names only one of a range of traits associated with PDA. For example:
Elisa: My concern is mainly that the pathological demand avoidance part of PDA is just one part of something much greater and more complex, and also that it is the most negative part. It doesn't sit right with me that the name should be that. Unfairly named.

As for pathological, I get the meaning, so for me it isn't an issue, but it is perceived as a very negative term, which is the last thing we need, as PDA people are already viewed as difficult.
Many members of the wider autism community argue that PDA does not merit distinction as a subtype within the autism spectrum because all autistics can be demand avoidant. I believe that our condition being named for the trait of avoidance only, coupled with its autism spectrum classification, has caused much of this confusion. Emily Wilding provides a detailed examination of PDA versus general neurodivergent avoidance in her blog post.


So what else to call it?
As  PDAers have a high need for personal control, are creative, and often driven to invent new names, it should come as small surprise that alternative names for PDA are frequently proposed by members of the community. Here are a few:

John Cannon: 
"let me say no first, then go away for an hour and think about what you have just asked me" syndrome.
Carrie Prior:
Ironically, I do actually like the acronym PDA; if only there was a more positive word beginning with P that could better sum up the demand-avoidant profiled person in a more inclusive way. 
Jenny:
Something to do with personal autonomy?
I like autonomy driven profile! 
Emily Wilding:
Pervasive Drive for Autonomy
Jessica Fox: 
I agree with Emily Wilding. Pervasive Drive for Autonomy, or even Pervasively Driven Autonomy, is a much better holistic descriptor of the neurotype than focusing on just one aspect of the reaction to the triggers of demands in an authoritarian society that prizes the following of arbitrary rules and commands. 
Louise Burrell:
"Pressure Detonation Anxiety" was the best I could come up with, but it doesn't come close to describing what PDA really is. I love Pervasive Drive for Autonomy, Emily's one, above (and the piece about it). Also, Protective Demand Avoidance was another good one (can't remember who penned it). 
Having said that, "Pathological" is a bit useful for distinguishing between PDA and other types of demand avoidance. Something about it really validates just how widespread and significant the DA is. People really seem to struggle to understand and believe that it is much more than not wanting to do an unpleasant task
Elisa:
I like Pervasive Drive for Autonomy. Autonomy is as important as air for me to survive.
Emily Wilding:
I do agree that our demand avoidance continue to be referred to as pathological, just not the whole neurotype described for this one attribute.

I personally agree with Julia Daunt, Riko and Kamala that changing the name of our condition would erode the limited awareness our condition has managed to gain. I do, however, accept that the term "pathological" is alienating for many, and this cannot be good for acceptance and respect. Like Carrie Prior (and many others I've spoken with) I am personally attached to the acronym "PDA." I identify with those three syllables without spending time pondering what each letter stands for: In my heart I'm a PDAer (not a pathological demand avoider). I also see that naming our condition for just one, negative trait is detrimental to PDA awareness and acceptance: many assume that PDA comprises demand avoidance and autism only. So might it be viable to hope for an officially-endorsed rebranding of our condition from "pathological demand avoidance" to a new term sharing the same initials, perhaps "pervasive drive for autonomy" (as Emily Wilding suggested)? This leads me to the question of who, if anyone, is actually in control of our condition's name? As far as I'm aware, the authorities here are PDA Society, National Autistic Society and various PDA-focussed professionals/researchers such as Phil Christie and Liz O'Nions. All of the above are, I believe, receptive to the views of the adult PDA community, so the possibilty of changing our condition's name seems achievable. The main hurdle I foresee comes, in fact, from my fellow adult PDAers, who will likely feel continually driven to contest each and every name for our condition! I truly love the free-thinking, personal control-needing, name-inventing, label-hating creativity of PDA. 

 

1 comment:

  1. I resist anything outside my personal control: sleep, eating, toilet use, expectations and demands that limit my personal choice. It became so serious for me in the mid-1980s that I had a total breakdown, where every aspect of my life was either out of my control or at serious risk.

    It would be another 12-15 years before I was diagnosed with Asperger's Syndrome.

    In the meantime, all I could think of was finding ways to be in control of every facet of my life, so I created a system I called the Freedom Personal Control System, which I launched in 1990-91.

    Within 18 months I was back in control, at least as far as biology and law would allow. In ensuing years I worked persistently to refine the system. I still use and teach it.

    I use the term PDA, but I call it Personal Desire for Autonomy.

    I prefer Desire over Demand because I've finally accepted that there will always be limits to total autonomy, such as the need for sleep, food, elimination of waste, etc.

    Yes, that Personal Desire for Autonomy is pervasive, persistent and powerful. But I don't stress over what I can't control that's external. Instead, I focus on controlling my perspectives, attitudes and behaviour toward those external factors so that my internal control is sound and solid.

    So yes… happy with the use of PDA for all of those associated meanings. Just don't mess with my Personal Desire for Autonomy. :D

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