06/13/2024
Thank you Kristy Forbes - Autism & ND Support as always for sharing your lived experience.
Here's the thing:
For me, pathological demand avoidance is accurate terminology in respect to my own lived experience from birth until this moment.
Our understanding of the word pathological is what needs addressing. Pop culture has borrowed terminology and used it in sanist ways that has lead to a collective resistance rather than an understanding of what pathology is.
Pathology relates to disease; but even the term 'disease' is misconstrued often. My neurobiology involves an experience of demand avoidance that definitely diverges from what is considered reasonable. Even to me.
But this is not the same as self rejecting, because I am not. Nor do I want to exist as a non PDAer.
I want the world to know and to see and to understand and to accept.
And, as it currently stands, others are typically unable to see what is not obvious. PDA. They can, however, see the demand avoidance, and the "need to be in control" (it's not really control when you're starting from below).
As it goes, in Psychology and Psychiatry, we name the behaviours that are obvious. We name the disease, the pathology. We lend terminology to the obvious difference.
Demand avoidance. For children, we name the behaviour.
Depression, anxiety, chronic stress, trauma. For adults, we tend to name the experience.
Why? Because adults tend to be better equipped to put language to the experience; whereas children can only show us..or they mask. We're then left to decide via our biased, uninformed lens what they're showing us.
For children, we call it Pathological Demand Avoidance.
For adults, we call it everything else that is oft derivative of a lifelong experience of PDA. All the co-occurring bits and pieces. The health conditions, the trauma, etc.
This is why we tell our stories when we know it's PDA and what PDA really is for us. I try not to hold back, while trying to preserve some privacy, but there greater drive for me is getting the lived experience out there so the world will think twice about current approaches to supporting PDA people.
Pathological Demand Avoidance is pervasive. Yes. And, it is far more than a drive for autonomy.
Initially I did encourage the use of pervasive drive for autonomy, years ago. And I don't have a problem with how others identify.
But for me personally, it's a bit light on.
PDA is disabling, debilitating and has caused a lifetime of rejection, abandonment and misunderstanding for me. It's why I work so hard to advocate for positive autistic identity today, and to support others to truly understand PDA.
AND, I have incredible personal attributes, skills and values as a result of being a PDAer. Determination, loyalty, true to my spirit, deeply connected and so much more.
It is more than a pervasive drive for autonomy. The language is positive, and yes, necessary.
I respect and honour the ways in which we choose to identify.
I also see many, many people hear about PDA, as in pervasive drive for autonomy and own the identity before exploring autistic identity, before exploring ADHD, or any other forms of neurodivergence and this is challenging.
I find it troublesome because PDA is still very young in terms of research and if all we think about it is that it's a person who likes to be in control, or doesn't like to be told what to do, then it's a struggle to move forward with understanding the actual neurobiology, the nervous system.
I am not trying to gate keep. I am sharing my experience.
If all it was, if the only thing I had to define myself by was a pervasive drive for autonomy, then I'd be in a different world.
PDA is far more than this.
Asking a PDAer to change how they identify is not PDA friendly. I won't do that, and I ask for the same respect here too. It undermines our experiences. Both yours, and mine.
You may not hear about the underbelly of what families experience in their worst moments, or what PDAers experience in their lowest moments. It often isn't safe to be shared.
There is a minimal, limited, undermined, under informed picture of PDA on social media and it's a problem.
Comments are off because I'm not invested in arguing about it. I am here to share stories, and support others.
There is an intersection here. The intersection of shifting away from disorder narrative AND keeping people alive. It's very real, and we're talking about not only adults, but children.
KF
