I heard about PDA almost seven years ago thanks to a tip from another parent in a FB group. I found one or two self advocates at the time on social media, less than a handful of parenting groups (none of them PDA-led), and very few resources for information or help. Overall, hardly anyone knew anything about it.
Now there’s quite a bit more of all of that available online. More groups, more advocates, more awareness; word really starting to spread amongst educators and professionals; many more resources and people who claim to be able to help. Overall, LOTS more people have heard about it.
Yet in some ways, I almost feel like we understood PDA better back then than we do now.
Because it’s never been an official diagnosis in any manual, I think a lot of people have approached PDA as something that is open to interpretation. And boy have a lot of people put their own interpretations on it! There’s the people denying its existence over here, the people making it out to be more than it is over there, and all kinds of stuff in between.
And it seems to me like more awareness has actually brought more misinformation, because more awareness in more corners of the internet and professional arenas has meant more people looking to put their own spin on it.
Problem is, I’m increasingly seeing harm coming out of some of these “reframings,” and the meaning of PDA is becoming so broad as to become meaningless - which makes me feel that some re-centering is in order.
And so, here’s my first offering in that endeavor. These are all things I’ve heard/seen people say about PDA over the years. Some of them are ridiculous, some are maybe closer but not quite right. The one in the middle is what I feel is closest to the truth. All thoughts are my own, you don’t have to agree, yadda yadda don’t come at me, bro. (And yes, the middle bit should absolutely be read in the voice of Stefan from SNL, because you know I can’t keep things too serious around here.)
[Image description: Infographic by Autball entitled “PDA Is…” Black text on an aqua/blue background reads: The intersection of Autism and ADHD; Caused by anxiety; Autism + Aggression; Someone who says “no” a lot; Just the regular demand avoidance all Autistics experience; Someone whose main coping mechanism is avoidance; Someone who is super controlling; The “cool” type of Autism; Executive Dysfunction; Just another functioning label. Each of these is crossed out with a big red “X.” In the center, not crossed out, is, “That thing of where anything that doesn’t feel like your own idea can threaten your sense of autonomy to the point of triggering a stress/trauma response.”]
Expansions on each point:
The intersection of Autism and ADHD: I get why people would think this, and it has a lot to do with externalized presentations of PDA getting all the attention, but PDAers without ADHD do also exist.
Caused by anxiety: Exacerbated by anxiety? Yes. Demands cause anxiety? Sure. But actually *caused* by anxiety and would not exist but for anxiety? Nope.
Autism + Aggression: This one especially grinds my gears because the second someone mentions anger and aggression in the Autism groups these days, people are jumping to PDA. Aggression is most often a sign of distress and can happen to anyone if pushed far enough. Not all PDAers are aggressive, and not all aggression in Autistic people is caused by PDA.
Just regular demand avoidance: There are TONS of reasons an Autistic person will not want to do something, and we very often do have more “no”s than an allistic person would simply because we have more sensitivities and incompatibilities with our environment. (And sadly, we are much more likely to have our “no’s” disregarded.) But lumping PDA in with all possible reasons for “demand avoidance” erases the significance of some people’s hypersensitivity to real or perceived violations of autonomy.
Someone whose main coping mechanism is avoidance/Someone who is super controlling: These are just responses to anxiety that absolutely anyone could have. If a PDAer’s anxiety gets high enough, they very well may adopt these coping strategies. But again, not all PDAers and not only PDAers.
The “cool” type of Autism: I’ve seen this one from PDA haters, actually. Unfortunately, there are some people who use PDA as some sort of Edginess Badge and think they’re somehow better than other Autistics, which is understandably off-putting. It’s certainly not what PDA should be thought of as, though.
Executive Dysfunction: This is absolutely a reason that people could struggle to do things, even things they themselves want to do. But is not the same as PDA.
Just another functioning label: Again, there are indeed some people who seem to use it this way. And the ableist underpinnings of some of the official PDA criteria do not help. But, it’s not right and shouldn’t be used this way.
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