Shortly after, once again, coming out of denial of plurality as an accurate framework for describing experiences I’d otherwise viewed through that Lense, I began to take a closer look at why, exactly, such cycles caried on in my case. The nature of the denial has shifted over time, in a direction I’d say is positive; I’ve progressed from saying that I made it all up and none of it was real to acknowledging the reality of the others inside while questioning their origins, as described by the trauma model, and actively trying to find other explanations before eventually giving up when confronted with enough evidence that I’m not playing a game. I think, as of October 25, 2023, I’ve finally settled on an answer. Before I explain further, though, I’d like to thank my mother for helping me to put the final pieces of the puzzle into place. Though she yielded to the wishes of the American education system by which we were traumatized in this body’s childhood, I believe she’s recognized how harmful such institutions are, and the evidence shows in her helping me to fully accept what I’m about to share with you all. I’d also like to thank my friends, especially those who’ve stood by me and refused to let my stubbornness prevent them from holding views about me that I, at first, did not agree with. Without their support I probably would never have accepted the vast majority of what follows, and would more than likely be in the grip of denial even now. Lastly, I’d like to thank my/our current therapist, who’s suggested what I’m about to share while not forcing any of us to accept it, something which has proven vital for reasons that will soon become clear.
There’s a subtype of autism that, as of 2023, isn’t recognized by any official diagnostic manual. It’s known as Pathological Demand Avoidance, or PDA. I’ve come to believe that we, as a system, display many of the characteristics of the condition, as described in section 3.2 of this article, and in a more reader-friendly format here, to greater or lesser degrees depending on a variety of factors, including who is at front and what’s happening around us, among many others. Both of the articles linked above offer the following list of traits characteristic of PDA, and I’ve copied it here for the purpose of describing how each of these traits relates to our experiences, both in childhood and beyond.
1. Resistance and avoidance of everyday demands, including those that are perceived as trivial or routine.
2. An overwhelming need to be in control and avoid being controlled by others.
3. Uses Social Strategies as part of their avoidance.
4. Surface social communication abilities, despite difficulties with social interaction and understanding.
5. ‘Obsessive’ behavior, often focused on other people or can be focused on performance demands (due to acute anxiety).
6. Appears comfortable in role play and pretend, sometimes to an extreme extent.
Before I go any further, I wanted to take a moment to define what I understand the word ‘demand’ to mean in the context of PDA, a difficult task given how wide-spread demands are in day-to-day life. When I first heard the word, I took it literally, thinking it was being used to describe harsh or abrupt orders given to one person from another. An example of this would be a parent saying to a child, “Put on your shoes right now, or else!”
As it turns out, a demand can take more forms than this, and can include such things as questions, spoken and unspoken expectations, cues/prompts, and even body signals, to name a few. The parent who asks, rather than tells, their child to put on their shews, could nevertheless still be placing a demand on the child, despite not yelling or giving an order. The key, from what I understand, is perception by the person living with PDA of something as a demand. Once that clicked into place in my mind and I started looking back at this body’s childhood, a whole lot began to make sense, much like the cascade of realizations that took place when I began to accept that we’d been traumatized to the point of becoming plural, and, in later years, when I realized that trauma didn’t have to define us as a system and that we could find our origins in sources other than suffering.
This was the hardest item on the list for me, Rozaya, to accept, until I started thinking about it in depth. I quickly realized that, especially in childhood and even in adulthood at points, I have the tendency to rebel, as I call it, against expectations that feel as though they’re coming from something other than my own desires in the moment. An example of this would be showering, which I normally enjoy and find refreshing. If I’m told to do so by a family member, and it feels as though they’re requiring or wanting me to do it because they said so, all desire I had to take the shower vanishes and I want to put it off until a time when it feels like I’ll be doing it because I want to and for no other reason. Interestingly, if a friend were to tell me to take a shower, even if they said “you should” or “go” or even told me to do so outright, I’m a lot less likely to perceive their encouragement as a demand, because they’re a friend, not a family member or someone who has a level of authority I myself do not. As a child, a lot more demands were made of me, and I resisted a lot more of them, though the form of that resistance changed over time. In middle and high school, the demands themselves were things like turning in assignments by a deadline, being OK with changes, assuming particular positions in PE classes in order to do an activity, and so on; in elementary school, these same demands were present, along with many others -- to walk and not skip, do it this way, be a big girl, and so on. These are everyday demands, but I didn’t handle them well, because I experienced the next item on this list.
In our opinion, this item should be the first one on the list, because every other feature revolves around it. This was the root of our reactions to many things in school. I also suspect that this need, which we know all too well through experience, is the basis on which many of us have founded our various stances, Yalluk’s anti-synthetics, pro-nature view being one example among many. It’s why going along with other people’s ideas, even when we wanted to, was also something we resisted. It was the cause of the physical sensations we’d feel whenever we perceived something as a demand, though we could never explain that to people before learning about PDA as a distinct set of traits. Its chronic misunderstanding on the part of school staff, which started, at the latest, when we were in the first grade and continued until we graduated high school, was one of the central reasons we came out of the education system traumatized. People have labeled us with oppositional defiant disorder because of it, even though we showed none of the vindictiveness associated with that condition until after we were put into the behavior program and forced, time and time again, to give up control to others, no matter how we felt about it. It’s difficult to describe, but if you’ve experienced it, chances are you know what I’m talking about, and if you haven’t, you should probably listen to people who have when it comes to it.
We did this, to the best of our ability, though the constant presence of adults around us as a child and even a teenager eventually limited this to such an extent that the only escape we had was inside of us. Elementary school saw a lot more of this than middle or high school, though after we were presented with the same assignment despite our best attempts to avoid the demand to do it, or do it in a particular way, my sense is that we eventually started dissociating, pushing the need for control, the need to avoid and all the feelings having these needs frustrated and ignored had caused aside, and leaving behind someone who could do what was expected of us, and, eventually, at least seem to enjoy it and/or believe that they did. There are examples given in the documentation kept by the behavior program of social strategies we used, but I have no memory of anything but meltdowns when we were loaded with demands, and I won’t claim an experience I don’t recall. But I know for a fact that we did use them as part of our avoidance, and that they weren’t allowed to last very long. Even now we have difficulty saying no and, until recently, would force ourselves to go to events or do things, believing that we were simply lazy and/or depressed and needed to push through whatever urges to avoid we were having. This has resulted in us coming close to burning out on more than one occasion, and I blame the behavior program, as well as later enforcement of its messaging, for that situation. Slowly, we’re recovering avoidance strategies, but it’s going to take more time, and more healing from earlier events, before we can confidently say and believe that we consistently use them again.
We’ve lost count of the number of times we’ve been told things like, “You’re very bright,” as justification of the demands being placed on us by people in the education system. Part of this, we now understand, stems from the fact that we apparently seem to have no difficulties socializing, as reported to us by people who’ve been around us since childhood. We know, from our own experience of social situations, that we do struggle, but this clearly doesn’t make itself obvious to people around us. In our formative years, we faced the same conclusions on the part of adults, despite having meltdowns and other obvious difficulties. The end result was that we were thought to be deliberately misbehaving with the intent to be manipulative or annoy others, and were misdiagnosed with Oppositional Defiant Disorder as a result. Recognizing and acknowledging this aspect of PDA in ourselves has allowed me, Rozaya, to begin to let go of a lot of the guilt that was trained into us by the behavior program and, more generally, by this body’s school experience. We weren’t being bad, or setting out to cause problems for ourselves or others; we really didn’t know what to do socially beyond a certain point, and the people who could have done something about it didn’t look beyond the surface and bother to realize that being able to verbally parrot back expectations in theory wasn’t, and isn’t, the same as being able to live up to them in practice.
I can say, without a shadow of a doubt, that we had both of these things and, to an extent, still do. For as long as we can remember, there has always been someone in our life who, for some or all of us, has been the center around which everything else revolved. The people have changed over time, but I don’t think there’s been a time after elementary school when the focus on another person hasn’t been present. As far as the other focus mentioned in this item, there was a reaction cycle we’d experience, at times, when faced with a demand, particularly in elementary and middle school, that deserves a special mention because it describes what we formerly considered perfectionism more completely than anything else we’ve found so far. It rarely happens now, but stands out in our minds because it used to play out so often. It looks something like this: someone makes a demand of us, usually to do an assignment or other piece of work in which the end result is graded or judged in some way, we react to the demand that we do the assignment (which usually stopped only because we’d learned to associate the process of doing the assignment with something else that we didn’t consider a demand, and/or that we saw more of a point in), then we’d be hit with an internal demand that centered on completing the task, whatever it was, in a particular way so that we could avoid a bad outcome that always changed with the situation. What we didn’t fully realize was that the thing we feared was the prospect of having to redo whatever it was we were working on, yet again having to face all the previous demands while also being aware that we’d essentially failed to meet them the first time around, and dealing with yet another implied demand – that we succeed this time. We attributed our reluctance to do anything that could potentially put us in a position to fail to dislike of certain subjects, just as the adults around us did, but it was really a result of PDA, and now that we know this we can say that we never actually hated any class we took back then, and fully mean it.
We would have had a lot more of this present in childhood had it not been for the behavior program and its staff’s constant redirection of our focus back to the tasks they wanted us to complete. As it was, whenever we felt like we could engage in that kind of activity, we took full advantage of it, going so far into it, at times, that we believed it to be as real as the everyday responsibilities we were expected to take on, a belief that opened us up to all kinds of experiences both good and bad starting in the fourth grade. This, in turn, resulted in many other things being made possible, among them an easy acceptance of plurality and the original process that made up my introduction to it, namely the personification of aspects of myself and subsequent treatment of them, on my part, as though they were independent people living inside of my body alongside me. I believe that much of the role play I did manage to immerse myself in, which was supported, at times, by those teachers who wanted learning to be something I could genuinely enjoy, formed the foundations of my imagination, and also of what we call the inside, or inner world in which the others lived. To say that we, or at least those of us who fronted in non-traumatic childhood contexts, were comfortable with role play and pretend is an understatement; to this day, some of us prefer it, and use it as a method by which to distance ourselves from distress and work through things that have happened, are happening, and might yet happen. This trait of PDA, as with all the others, has shaped us in ways we have yet to understand, but which we are sure impact all areas of our life, and, in this case, we’re grateful for that. I believe that it is the foundation of the creativity that once allowed us to write detailed stories, and that is now being channeled into plurality-related things for the time being. As with all the other traits on this list, this item resonates with our experience of life in many ways difficult to describe, and even more difficult to detangle from the other aspects of PDA. For that reason, we’ll stop rambling about it now, reserving that for another post in which we won’t have to provide a ton of context we’re only just starting to fully understand ourselves.
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It’s not an overstatement to say that every single one of these aspects of PDA was systematically targeted for either reduction or extinction starting from our earliest memories of, as it was said, ‘having made poor choices’. Our resistance of demands was the first to be attacked, and this stands out to us most in the behavior program and, later, in our high school years, both places where people in positions of authority had one-on-one time with us and used it to attempt to set us on their idea of a good path in life. Our needs to be in control and avoid being controlled by others were almost completely suppressed, first by deliberately created situations in which the only choices we were given would both lead to the same outcome, and then by the people responsible for such situations addressing our reactions during them as if they were the problem, in effect preventing us from realizing what we were feeling prior to being flooded with anger and/or anxiety, or why we were feeling those things in the first place. The social strategies we once used to avoid demands were quickly rendered ineffective by the presentation to us of whatever we had been trying to escape when we were inevitably brought back to the room we had been working in, something which happened repeatedly as it was a part of our behavior plan. This was compounded by messages such as, “It’s rude to cancel appointments,” “it’s disrespectful to say no, and disrespect is always bad,” and “you’re a child, therefore you have to listen to adults,” all of which are things we’re struggling to unlearn in our early 20s. The fact that we had, and still have, social differences that are apparently not obvious to neurotypicals, but that we notice and struggle, at times, to compensate for was used against us to bolster the mistaken idea that we were a very bright student who was simply not trying hard enough, or deliberately refusing to do what was being asked of her because she wanted to be, for lack of a better term, an asshole.
By the time we were in middle school and had begun to realize how much we fixated on particular people, we’d also begun learning to hide the extent of this fixation from everyone around us to the best of our ability, including, in some cases, the people we were fixated on, because the few times we didn’t and were honest as we’d been taught to be, the responses we got were either cautionary or outright unsupportive of either the fixations themselves or, in later years, of the tendency we had to develop them. The same could be said for those which related to performance demands, accept that the responses to these were, more often than not, to label them as perfectionism and/or to “encourage (this word is in quotes) me to let them go, as if it was really that easy. Though our creativity was encouraged, our role playing, particularly to try to escape from this world’s incessant demands, was discouraged when we needed it most, starting, in our memories, from elementary school, where we were told to “work during work time so we could play during play time.”
By the time we started middle school, the responses had become more hostile; we were told to ‘be truthful’ on more than one occasion, which resulted in a belief on our part that anything that wasn’t serious, or that fell outside of accepted lines defining what was and wasn’t OK in terms of entertainment or humor, was automatically bad. While we did tend to make up stories in our younger years, they were about things that, in the big picture, weren’t all that important; in the fourth grade, we once blamed our having taken some Legos home from school without permission from adults on an imaginary friend even as we brought them back so as to avoid the demand of having to feel bad for our actions and then to act accordingly, for example, but these types of things stopped as we entered middle school and lost interest in anything but electronics, making music, and our then boyfriend. The worst we did in that time was make up answers to questions we couldn’t answer otherwise, such as those directed to us in group therapy situations that asked about experiences we’d never had before. Not answering was never outright given as an option, and we didn’t know if we’d be believed if we were truthful, so as far as we were concerned, it made no difference if we made up something or not, as long as it didn’t involve abuse (which was a line we never crossed).
All of these things finally stopped being assaulted when we moved into an apartment in 2020, where we could be free of the demands of fitting into an environment more reflective of the world around it than of the people it was composed of. I’m glad to say that none of us feel the need to outright make things up, and that role play, along with every other aspect of PDA, is finding its rightful place in our life, and has been since that year. Now, when we need to avoid a demand, we do so, even if we were able to comply with it previously, because we have no desire to deliberately cause ourselves further discomfort. We’re working on establishing more control over our collective life (which sometimes includes giving it up in highly specific contexts to people we trust). We’re reclaiming those social avoidance we were always told were rude, finding those inside who were given such messages and slowly beginning to let them know they’re not obligated to repeat them, because the body is now that of an adult. Though this is still a work in progress, we’re coming to terms with the idea that neither social ability nor the lack of it, both of which we display depending on the situation, is reflective of our collective level of intelligence, and that we’re allowed to struggle when we struggle and to do well when we do well. We’re letting our fixation on particular people show up however it wants to inside, despite being afraid to openly express it when the opportunity presents itself, and we do our best to ride out and breathe through the fixation on performance demands when it arises (which is rarer now that we’ve left school and have no plans of ever going back). Lastly, role play is integral to our functioning, and plurality, by extension and due to my introduction to it, is part of that, not in the sense that I’m pretending to be more than one person but in the sense that both role play and plurality provide a buffer against reality so that whatever needs doing in this world can be done with minimal trouble.
Ultimately, I don’t want to be disruptive to anything (except for the things that need to be disrupted), and I never did. For the first time since 2016 when we realized how traumatic the behavior program, and our school experience in general, was, some of us finally feel like we have the answer we’ve been looking for, the key that explains so much that all the other suggestions couldn’t. We weren’t a defiant or deliberately hurtful child. We live with PDA, have been shaped by both it and autism, and most likely are plural, in large part, because of both of those things being chronically misunderstood and wrongly treated. None of what happened to us at the hands of any of the adults around us, or the agencies who were supposed to be helping us, was our fault, despite their repeated placement of responsibility for the majority of their artificial consequences, and those they manipulated the situation to result in, on us and how we were apparently ‘misbehaving’. In closing, then, I’d like to say this: I’m not sorry for anything I did in school, I’m not sorry for being autistic, and I’m not sorry for being plural, because the manifestations of those things were not problems then, and they aren’t problems now. I’m only sorry it took me so long to recognize my reality through all of the shame I was taught to have about many of those manifestations, and that I’m only now, as an adult, able to recognize PDA and its repression during our childhood and to do something to counter the latter. I know society in general isn’t going to like that, but those of us who realize what reality has been for those years can’t bring ourselves to give enough of a crap about their opinion to give it any real weight in our collective decision; if they wanted us to care about their desires for us, they would have listened to us when we protested what they were doing, both in school and out of it.
I’m going to be transparent and admit that I’m not sure how to end this. I’d intended this post to be informational, but the more I explored its subject the angrier I became at the way we realized PDA was treated in our case and, most likely, in the cases of others as well. I guess this is the part where we thank you for reading, but honestly? That seems overly formal, so we’ll say we appreciate it and leave it at that. Oh, and hopefully write more next year about all the things we said we were going to address in other posts and then neglected by accident. See? We can admit to our mistakes. :p
Let’s go do that… and, this time, not make it an inner demand. That’s what screwed blogging, and working with one another, over into something we didn’t want to do for months at a time.