Pathological Demand Avoidance in Practice: A Few Thoughts

I would like to begin this post with an honest confession: I cannot keep up with the growing body of knowledge concerning Pathological Demand Avoidance. There are books on my reading list that I'm not sure I'll ever get to. Many of the posts I read on social media or in online groups explaining PDA leave me more confused that enlightened. Where, exactly, is the dividing line between autistic avoidance or other forms of demand avoidance and actual PDA? How encompassing or restrictive should the PDA spectrum be made? At what point does the "pathological" piece begin?

And what about the name itself? Should PDA instead stand for a "Pervasive Drive for Autonomy"? I dislike that even more than "Pathological Demand Avoidance". It seems to relegate a disability and its associated challenges and struggles to the status of a mere personality quirk.

However, carrying on from my first post on PDA, and in spite of the shortcomings of my own understanding, the idea of PDA remains one of the most useful concepts I've encountered.

With that said, I also find PDA maddeningly difficult to deal with. My PDAer seems to have an unparalleled ability to get in her own way. There's nothing quite like dealing with a little orangutan who is upset beyond words that nobody will help her, while simultaneously screaming "No!" before even hearing a potential solution that is being offered for consideration. (And therein lies the downfall of my parenting. I'll return to that well-worn mistake a bit later.)

It's been a long road -- including a lot of self-awareness -- to discover some things that do help. Some of these are useful in the moment of an escalation or meltdown and others apply in moments of calm regulation. Most, however, are mindset changes that are useful in either situation. None are instant fixes or magic bullets.

I'm also not sure where to draw the line between autistic and sensory meltdowns, and escalations of a PDAer in crisis. I feel like I have seen a nearly infinite variety of forms of dysregulation, and I am unsure how to categorize this bewildering array of presentations. But really, these distinctions don't really matter to me as a parent. What I've needed is a practical game plan that can be broadly applied.

This is another area where I feel there are few road maps. I have wondered about the utility of various training programs, but have yet to find anything that seems accessible and suitable. So, my strategies have been cobbled together from a diverse set of sources (it really does feel like there is a lot of re-inventing the wheel going on), and refined by painful trial and error. A significant number have relied on Oranguette's own abilities to communicate what is helpful for her, which, despite the necessity of a certain amount of collaborative problem solving, strikes me as an unrealistically heavy demand to place on anyone who is struggling. Once more I will note the stark difference between mental and physical health care. I'm sure glad that my family member's doctor did not ask them "so what do you want me to do?" after said family member's diagnosis of a major physical disease.

Nevertheless, I will carry on in a more helpful direction with some ideas for managing in the moment with a distressed PDAer.

Presence

Some children (and adults) seem to do well by removing themselves to a safe place and working through a meltdown alone. This does not work for us. Instead, presence of a trusted person is key.

Parental Self-Regulation

My presence is not enough; I also need to be well-regulated myself. For a long time, I thought I was doing this. I give the external appearance of a reasonable approximation of calm during meltdowns and escalations, and I tend to withdraw and shut down rather than lashing out when I am dysregulated myself. But that wasn't enough, and Oranguette could always sense it. I am still figuring this out (and yes, there is a book in my queue of course). But I have caught onto a few things.

I have to act as though I have all the time in the world. Time needs to stop, and stand still. The clock doesn't matter. Very little else matters, other than being present in the moment, and fully focused on the situation at hand.

Equally critically is believing that everything will be ok. Not just pretending, but fully embracing the mindset that the difficult spells are just bumps in the road, and that everything will ultimately work out. I have come to see this as a self-fulfilling prophecy.

A third related piece that I have discovered is not trying to predict the future. I have to completely let go of trying to envision how things will sort themselves out and what possible solutions will eventually look like, and just allow the future to remain shrouded until it reveals itself in its own time.

I'll note here that this sort of self-regulation is a very high standard to hold oneself to, as a parent and human being (orangutan, I mean). Of course there are times I have been triggered and engaged. Although that would be a wildly unhelpful pattern to fall into, the odd time it has led to deep discussion and meaningful changes. Sometimes children do need to see our emotions too. There's obviously a very murky line here, and things get very messy with the intergenerational trauma that so often runs through families with undiagnosed or unmanaged neurodiversity and mental illness. I have no answers here.

There is also a fine line with the sort of radical acceptance that tends to parallel some of these shifts in mindset. I have found practices like radical acceptance or the art of surrender to be a necessary piece, but are absolutely not appropriate in every circumstance. These can become damaging when they distract from root causes and real solutions.

Presumption of Competence

Above, I mentioned the necessity believing that everything will be ok during any form of meltdown or escalation. I recently read a brilliant statement in a social media group that has completely changed my perspective: namely, that this is a form of Presumption of Competence.

I have read that a PDAer's inbuilt drive for autonomy is often what ultimately propels them to their own unique solutions, and that absolutely rings true in my experience. All (ha!) that is required then is faith in the individual and the process.

Validation

Validating other's feelings does not come easily to me. I am an explainer and, in some contexts at least, a problem solver. I may have a tendency towards pedantry. No, I'm not fun at parties. And I don't like squishy things like feelings.

Yet the single most important thing that Oranguette has needed from the adults in her life is validation of her feelings and experiences. Just to add an extra degree of challenge, she will often say things that sound to me exactly like demands for solutions, when what she really wants and needs is still just the opportunity to be heard and validated. It took me a long time to understand that, and even longer to begin to do that effectively. That is the well-worn parenting mistake I mentioned above.

There is a video that illustrates this very effectively. It's called It's Not About the Nail. I don't get it, I don't like it, and I feel every iota of the male character's frustration. But, apparently that is generally what someone with a nail in their head needs. Inexplicably to me, the times I have been able to do this the nail either disappears on its own, or the person can then (eventually) come to their own brilliant solution for removing the nail without my assistance.

I have enough self-awareness to admit that I am also sometimes the one with the nail in my head rejecting all practical assistance. Feelings are indeed weird.

The Centrality of the Relationship

Just as explanations and solutions need to take a back seat to emotional validation, the parent-child relationship needs to come before everything else. When that connection and attachment got lost, everything else got lost too. Rebuilding that connection required all of the above paradigm shifts, combined with a return to the sort of high responsiveness and release of expectations that characterized parenting my children as babies.

Humour

There are obviously many situations in which humour is neither appropriate or helpful, but levity and a keen eye for the absurd have kept all of us in our little buffoonery afloat. Mr. Orangutan has a knack for interrupting a downward spiral with a random and completely unexpected twist.

There is a caveat though. Neither distraction nor using humour to deflect from problems have ever been useful. In my experience, both are counterproductive. Nevertheless, humour as a tool to depersonalize experiences and inject a completely unexpected viewpoint has been valuable. I hope it is obvious that I mean a kind sort of humour, and never mockery.

The Medication Piece

This one is difficult, and I will keep my comments brief. With the wrong medication, none of the the above mattered, and the crisis became unmanageable despite what techniques were used. Conversely, I know medication can be pivotal in helping by diffusing some of the relentless anxiety (yes, that troublesome word again) and obsessive thoughts that fuel the threat response. We are not there yet.

Many of these mindset shifts I've written about here are eye-opening exercise in patience and relinquishing control, again coupled with a presumption of competence. I sometimes flip through the book The Parent's Tao Te Ching by William Martin, and find it a lovely companion to some of these perspectives.

On a lighter note, I often recall the "It's not a motorcycle... " scene from Pulp Fiction and the "Bad Horse" scene from Tangled (how are those for very different movies?) as fun examples of what perspective taking and validation look like. Though it is obvious to me that neither Fabienne nor Maximus the horse are PDAers, otherwise both of those scenes would have played out very differently, and would surely not have been over and done with in mere minutes! Nonetheless, they are fun reminders for some of the most difficult work I have done as a parent.