I had been meaning to write a full article regarding my thoughts on the name for my neurotype "Pathological Demand Avoidance" for a while and then another PDAer, and a friend of mine now, wrote one and so I chose not to. Sally Cat's article is excellent, raising many different voices, including my own and crediting me appropriately. You can read it here.
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.
Let me know what you think...