I struggle with the language used to describe autistic people and those of us with a PDA (Pathological Demand Avoidance) profile of autism.
I do take it personally, because, well, it is personal.
Here's what I'd like families to know about PDA..
The characterisation that a PDAer "uses strategies to avoid demands" isn't always a conscious act, even though the language may have it appear so.
Demands are also not exclusive to being received by others and external sources, but from myself.
I'm often unable to do the very things I'd like to do.
When faced with perceived demands, my internal resistance (a self preservation machine on steroids to protect my hypersensitive neuroception) will do whatever it takes to protect me, which means not complying with the perceived demand.
An example of this is wanting so, so badly to just get on with my study.
I've been attempting for a week now to be able to read one chapter and watch a few videos.
PDA says No.
It is an internal, extreme anxiety that drives the part of the brain that is responsible for filtering and organising, assessing and understanding threat from my environment.
PDA tells me I am either in control, or being controlled.
It tells me I'm either winning, or losing.
It shows up as instant and overwhelming fatigue.
When people ask me questions that are perceived demands, my brain will often scatter and I'm unable to focus on what the question actually is.
Other times, I will feel that powerful internal resistance, stand frozen to the spot, and know that this isn't budging.
It can be disabling and extremely uncomfortable, and I am forced then to use conscious strategies to avoid the situation completely so that I am not mistaken as rude, narcissistic, selfish, self indulgent, arrogant, insubordinate, or 'difficult'.
Demand avoidance for the PDAer is both a conscious and unconscious act that I sometimes have control over, and sometimes don't.
I'm grateful for it, however.
It means that I'm forced into having boundaries that even if I wanted to, I'm unable to move from at times.
It means that only people who truly understand and accept me are a part of my life.
It means that for the most part, I am safe and well.
As an adult, I am able to move through the anxiety IF and only WHEN the person asking anything of me is a completely safe, trustworthy, patient, kind and unconditionally accepting person.
It's important to me that families raising children with a PDA profile of autism understand that avoiding demands really is 'pathological', as much as I loathe that word, or the misunderstanding and assumptions that accompany it.
Often, I am forced to just accept and wait until the moment where I am free to get on with the things I want to get on with.
If we were able to exercise control over our PDA, it just wouldn't be a diagnosis.