Multiple opinions on the name Pathological Demand Avoidance

Both Emily Wilding and Sally Cat of Free PDA have written on, and collated opinions on, the name for our neurotype, known as Pathological Demand Avoidance or PDA for short. Below you will find Sally Cat's article, containing ideas from a number of PDAers, including Emily. Then below, an article written by Emily to add some thoughts. Right at the bottom, we have added a few links to other articles we have produced that may be helpful.

From Sally Cat:

"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 possibility 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.

Now further commentary from Emily Wilding:

Why change it?

There are a few issues here. Some people object strongly to the use of the word pathological as it implies illness and disease or brokenness due to its many definitions. I believe in this case it was meant in the form of describing that the demand avoidance experienced is atypical, different, distinct and more pervasive and fundamentally ingrained in comparison with other demand avoidance. If this was the intent then it makes complete sense to describe our demand avoidance as pathological. However, due to the many definitions, including some fairly negative connotations of the term, I can see people's concerns.
The next issue, and the real one for me, is that this neurotype is named for just one aspect of behaviour that is experienced as part of it. I do believe that we experience a "pathological" or distinct form of demand avoidance, where other more typical forms do exist. You can read about how it is distinct here and here.
My issue is that this is one aspect of the profile is just one aspect of it and it is created by a fundamental driving force in a PDAer, and so are the other aspects of behaviour that indicate a PDA profile. Naming it for just one aspect of behaviour stigmatises that behaviour and trivialises the other behaviours and traits involved in the neurotype. It thoroughly limits peoples' understanding of the experience, and ignores or misunderstands, the actual driving force behind the PDA experience.

Why keep it?

I know there are those who adamantly resist the call to change the name, and I understand. Change is tough and PDAers are notorious for resisting, and wanting their own language to define things, and their own way. Me as much as everyone else. My wanting it to change is just as much a part of PDA as those wanting to keep it - and when does it stop?
The point that the more sensible voices make is that a change at this point could inhibit our progress is creating awareness and acceptance, and out of respect for the person who "discovered" the profile, we should leave well alone. I don't believe anything should ever be left alone just because it has always been that way in the past. The lives and experience of all those now and in the future who are impacted by PDA in any way are more important than respecting one person's past. The history will always be there.
The other point is important though. Changing the name would probably lead to some confusion for a while. Fair enough. However, I will argue that any temporary set backs that are experienced would be replaced by serious gains. Essentially, a rebrand of PDA in a different light could actually improve acceptance from professionals, which is desperately needed. It could also create more acceptance within the autistic community.
Most PDAers have become "fond of" or used to the acronym PDA, and I feel similarly to an extent, but also feel that ensuring we keep that will negate some of the issues around the change and potential confusion.

What would we change it to?

The overriding feature of this neurotype is an intense and pervasive need for personal freedom and self-determination. This is autonomy. PDAers can only be autonomously motivated, and will seek autonomy at every turn, whilst resisting any breach of autonomy, including, but not limited to demands. The PDAer needs to live their life according to their own rules, their own code and compass, and would really prefer the world changed to fit that. This makes PDAers great activists and revolutionaries, people who lead and inspire others and ultimately pretty awesome people, except when they have to live under other people’s rules, expectations and demands. 
I therefore suggest, and have suggested for some years now, that it be renamed "Pervasive Drive for Autonomy" or "Pervasively Driven Autonomist". We can retain the term PDA and PDAer, the PDA Society and most of our business and Facebook pages, whilst having a term that represents us properly, does not stigmatise our experience, and causes less controversy in the autism community.
The concept of Free PDA is that people, all people, can speak freely on this, so please feel free to comment and discuss this. It is a potentially contentious issue, but an important one.

...
Further reading:

Comments

Popular posts from this blog

The importance of undiagnosed adult PDAer voices

Identity