What’s in a Name? Pathological Demand Avoidance Edition
If you don’t know what Pathological Demand Avoidance Syndrome (PDA) is, please feel free to read up first. I don’t mind if you do. Actually, you should probably become aware of this supposed subcategory of autism.. I was first made aware of it sometime last year. I blew it off after getting slightly upset but filed it away. Just another pathologizing (literally, it’s in the title.. see pathological.. same root.. pathology… yeah.) subcategory to other a group of autistic children.
But it’s been popping up again. Yesterday, it popped up in a supposed Neurodiversity-aligned autism parenting group. They claim that they don’t allow pathologizing of autistic children in the group (hello again.. see name of subcategory.. pathological… from the root pathology…). So when it was brought up, I decided to say that it’s pathologizing and just.. no. Yeah. But then I went through and explained how demands are hard. They’re just hard. Let me count the ways.
First, I need to stop what I’m doing. Process what you say. Try to shift my brain from what I’m doing to what you expect me to do. Then I need to process the steps to do what you expect me to do. And then I need to actually start the thing you want me to do.. While I make sure I’m not showing anger at stopping what I was doing.. And interrupting my train of thoughts of my planned moment/day. Then it’s quite possible that what you asked me to do is difficult because of sensory reasons, or executing the plan I’ve tried to create in my head in the right order. Demands are hard. They’re hard. Stop pathologizing that they’re hard on your child who doesn’t have the coping skills I do as an adult.
Oh.. but that’s not good enough. No. We have to say that the category does describe a specific subset of people (it doesn’t.. on some level all people who have their own plans find changing those plans tough.). And sure the name of this subset is pathologizing.. but that doesn’t mean the criteria is pathologizing.. that doesn’t mean the recommendations aren’t pathologizing.. No.. those are useful.
So shall we look? I gave you the link above.
The distinctive features of a PDA profile include:
resists and avoids the ordinary demands of life
uses social strategies as part of avoidance, eg distracting, giving excuses
appears sociable, but lacks understanding
experiences excessive mood swings and impulsivity
appears comfortable in role play and pretence
displays obsessive behaviour that is often focused on other people.
Hrm.. so… we have pathologized because “ordinary” (ya know, because every day tasks are easy for everyone all the time, every time and never ever, ever difficult) demands shouldn’t need to be avoided.. Right? And then we get to the ways things are avoided. “Appears sociable, but lacks understanding” is another way to say “Has typical receptive and expressive speech for their age, but with pragmatic deficits”.. Nope nope.. no pathologizing there. (sarcasm) Hrm.. and let’s see.. excessive mood swings and impulsivity.. Nope, still no pathologizing. (sarcasm again) And “obsessive behavior that is often focused on other people” is totally not pathologizing (this is sarcasm again.).
So basically.. the only one that’s not inherently pathologizing is “appears comfortable in role playing and pretence.” Though, we could argue that the “appears” part suggests that the person is not actually comfortable but just willing to play along.. but I’m trying to take these at face value.
Alright.. so now.. let’s assume that PDA is a real thing. Which I think is a stretch. But ya know.. for the sake of things.. Let’s turn to page 8. Where we find the recommended teaching style and approach of the UK Department of Education. And please remember that The National Autistic Society says
Best practice differs for children with this profile…
For a few of these, they’re things you’d recommend for any autistic child, and many for any child period. But somehow it’s different for an autistic child has learned coping skills to avoid demands. And that’s kind of the crux of it, isn’t it? These are children who know demands are difficult and have developed ways to cope while not being supported. Not only that, they have now been pathologized by their parents because they can’t fathom why “It’s time to get out of bed.” might be hard.
These strategies that they suggest be used on these autistic children.. They do a few things.. Some use trickery to make a child comply, but giving them a sense of control that they don’t actually have. They at least assume autonomy or else they wouldn’t need to use trickery to make the child comply (instead they’d just ABA it out of them). But they do all of this because they assume that these kids are “different” than other autistic children.. They see the reason for avoidance in other autistic kids to be because they don’t understand.. or because they can’t comply… or because they’re not social. So they’re literally othering a group of autistic kids because they want to be social but can’t comply with demands.
And somehow.. none of this is pathologizing to people who believe in pathological demand avoidance. Not the criteria.. not the strategies.. not the motivations behind said strategies. No amount of othering has taken place. Nothing.
Side note: What particularly upsets me today is that I tried to bring this up in the aforementioned group. I tried to be just as concise as I was here (I was far more snarky here because my space, my rules.).. And for my hard work today, I was removed from the group.. And after being removed, my hard work was deleted.. And then after it was deleted, the admin who removed me accused me of being disrespectful because I dared say in a group that doesn’t allow pathologizing that pathological demand avoidance is pathologizing.
That’s why I’m bringing you this post. A lot of emotional energy went into rebutting something I see as damaging. It’s a rehash of “But my kid is too high functioning to have a feature like those low functioning autistic kids.” Or “But he’s so social and speaks so well.. he must be manipulating us.” or “But he’s so smart. There’s no way that a simple task is difficult for him.” And it’s wrong.. and people need to stop doing it. Recognize that some things are going to be difficult for autistic people. And work to support the parts that are. Please. Stop making it about their response to the difficulty and fix the damn difficult things.