Written in April 2023
I like the term “neurospicy”. What I like about it is the allusion to flavour, because people's individual neurodivergence is a bit like a recipe. The combination of conditions or traits, and the way they come together gives everyone a slightly different result, so some people might end up with a spicy dish, others with something fruity, sweet, salty or some kind of Willy Wonka-esque foodstuff that changes flavours as you eat it.*
My personal neurodivergence recipe is still being reverse engineered – I know what the end result is because I've been living it for 40 years, but I am still figuring out what goes into the dish, in what amount, and in what order. Most recently I've come to realise that there's some PDA in my mixing bowl alongside the autism, the ADHD, the dyspraxia, the hyperlexia (and likely a pinch of dyscalculia) with a drop of extract of RSD to bring the flavours together.
PDA, for those who haven't heard the term, is Pathological Demand Avoidance. I prefer the community-originated term Persistent Drive for Autonomy. I especially like it because the alternative labels are “stubborn” and “difficult”, both of which I've been toting all my life, and which come with a lot of negative connotations (especially when you're read as female, because that means you're also “bossy”).
PDA manifests in many ways and it's only because I have spent time delving into people's experiences of it that I was able to realise how it is part of my neurology. To begin with, my understanding was that it makes people unable to do things that are asked of them, and can even affect things people ask themselves to do. Example: you decide that as it's a nice day, you'd like to go for a walk. And then your brain goes “nope, not doing that”.
This means that people struggle to even do things they want to do, and will be utterly unable to do things that others ask of them. This can be the case even when requests are framed not as “we're doing this thing so you are too” but as “we're doing this thing and you can join in if you want to”. Even that seemingly undemanding, autonomy-providing mode of expression can trigger a PDA response.
I thought that because I don't experience this, that PDA couldn't be part of my neurology. I can do things I want to, and for the most part have no problem complying with requests from others. However, I noticed that I tend to go through phases of yes or no responses to requests and demands. I also realised that the yes and no responses were part of the same mechanism.
When people give me unsolicited advice, or comment on what I should have done in a situation we might be discussing, I immediately close off and bat away these suggestions, even if they are well meaning. I don't want input, and I don't want feedback, because these feel like demands as well as criticisms of my actions. When people give me these unsolicited comments it's like they are saying I haven't done enough, or done it right, and it feels like their acceptance of me, and endorsement of my decisions is dependant on my meeting their demands. So it's a hard no.
For people I know less well, and when I am overwhelmed, I tend to give a yes response. This seems like I am compliant and not avoiding demands, but in fact I have no intention of doing whatever it is they are suggesting, nor am I accepting that they are right and I am wrong. I'm avoiding the immediate demand of continuing the discussion or interaction. I am avoiding the demand of compliance, by giving the appearance of compliance, which is the outcome desired by the other person.
Essentially I have to feel like I make the decisions about what I do, and what happens to me, and I have a pathological aversion to the idea that other people have any say in what I do or in my choices. I do not want their feedback, their suggestions, or their criticism because this is a threat to my autonomy. My PDA is most noticeable when I am overwhelmed, struggling with life, or processing a lot of information or events. There are times when I am quite happy to have a discussion, to take suggestions, and to listen to the ideas of others, but these are times when my autonomy does not feel threatened.
Perhaps as I learn more about the way I work I'll scale the tablespoon up or down depending on what else turns out to be part of my neuroflavour. One thing I know for sure is that my neuroflavour is one of those ones which changes as you eat it, and which can be sweet one day, salty the next and downright inedible at times.
*Pretty sure it was the roast dinner bubblegum I'm thinking of.