PDA fae

Author: plumfae

  • Oops.. and an bipolar update

    Well, ooops. I posted to my instagram account (winternighttraveller), in the depths of delusion. Not going to go into details of what my delusions have been, there’s no need (and I find sharing the details highly embarrassing after they’ve started to pass).

    Currently I’m an inpatient on a ward, after a summer MH crisis. It’s been.. difficult, I’ve been very poorly with psychosis.

    There is some truth to the content on the instagram: I do intend to do lived experience research into PDA, using perceptual data to look at the differences in brain regions and functions between Autistics, PDAers and Allistics. I suspect that what makes our brains tick is that we are a halfway point between the other two neurotypes: processing in a top down manner, but also in a more Autistic bottom up way. That is to say, that we partially use heuristics* cognitively, but also take an awful lot from our sensory perception to guide our cognition. I wonder if possibly the demand avoidance/anxiety arises when the two “collide”, and the brain feels overloaded between the sensory input, and external top down induced “demands”.

    *top down and heuristics refers to using cognitive shortcuts, and prior known awareness to guide automatic thinking processes.

  • Demand cup update.

    Making one of these because recently things have changed at my supported housing in a way that may provide me with more demand capability in life.

    In short, I have been offered a ‘quid pro quo’ of I don’t demand too much of them and they will demand much less of me. As in, I just have to keep telling them I’m alive daily, and nothing else.

    That works for me, I can work with that. I like quid pro quo when it’s not corrupt, so yes, if we’re playing this game I’m happy with it. They’ve also asked me to not tell them what ‘PDAers need’ but what ‘I need’ which, sure I can play that game too. They don’t realise that’s a demand, so they’re gonna hear a lot of ‘I need you to understand that’s a demand’ in the near future.

    But what can they say? They demanded it of me. So I’m happy to become the resident broken record of the scheme for them until they learn how to help, well, PDAers.

    Ridiculous I have to do it this way when I have the diagnosis but, fine sure.

  • Demand free time

    Recently I’ve needed a lot of this. I’ve been dealing with a series of traumaversaries throughout July and August, which has been Very Not Fun, and they obliterated my demand capacity.

    I re-downloaded tiktok, with better knowledge of how to curate a better feed for myself than when I first started with the app back in 2022. It’s now a lot of Autism/ADHD/Trauma recovery content with the occasional pet content (usually cats), and sometimes cleaning/cooking videos. It now feels replenishing to spend a number of hours browsing those videos.

    I find tiktok an ideal way to have demand free time that isn’t ‘understimulating’. Sometimes demand free time does need to be time spent just sitting, maybe with music on, and that can be replenishing in a shorter amount of time. But my ADHD finds that very difficult.. or sometimes there is just a very large amount of demand free time required. In those moments, social media becomes the perfect activity. I can engage in multiple special interests, without being required to expend very much effort at all.

    Of all the things that learning about PDA taught me, demand free time was the most useful, life changing concept I learnt of. I can finally recuperate from life properly, and much much faster. It helps me stave off (and when needed start to recover from) burnout. I now know it is a vital need to empty my demand cup.

  • Food..

    .. is hard. Demands, sensory aspects, executive function, these combine to make food a complete nightmare for me.

    So it definitely doesn’t help when I start losing my appetite again. Might be to do with reducing my risperidone. Might also be to do with staff nagging me too much about how I’m going to lose weight – I do not need extra demands around food or exercise because then neither will happen.

    For now I’m aiming for low spoons nutrition. Smoothies, cereal, microwaved baked beans, protein from the freezer, lots of potato, meals that just need putting in the microwave or oven (and nothing else), and multi-vit water. The highest spoons food I have is apples, which I need to cut up to eat because biting into them makes my gums unhappy.

    Hopefully I can settle into a good rhythm, eating like this, that can sustain me. Smoothies are definitely a low demand, low effort way to get a little more fruit and veg than I was previously.. and the more fruit, veg, carbs and protein I eat, the less processed food I should need to snack on to feel full.

  • relationship anarchy and being gentle with my selves

    I need alternative relationships – I’m demiromantic, for a start. We’ve been talking about the concept of relationship anarchy and all interpersonal relationships in a persons life being (close to) equal.

    For me, I would prioritise a queerplatonic (QPR) or romantic partner, but all my other relationships are equal. Family is not more important than friends for example. Discussing this helps me learn how to make these kind of approaches work healthily. I want to structure my social network that only those who can cope with being equal to everyone else remain in the network, over time, but first I need to build a stronger network in line with that principle.

    I’d hope to find a QPR or romantic partner, but that can come with time.

    I wanted to share a resource that was shared as part of the discussion: https://robynlposin.com/being-gentle-with-our-selves. It’s important to allow ourselves to be very gentle with ourselves in life, and to avoid what we need to avoid. Particularly for me, being gentle with ‘my selves’ is an important concept. I don’t want to push my inner child too hard, and I want to learn to work with my inner critic for example.

  • Encouragement is my PDA anathema

    I’ve read far more about PDAers hating praise, and wondered why it doesn’t seem to bother me – a cause of imposter syndrome at times. However, with praise, I can view it as a response to an act, not a request to repeat the act.

    Encouragement however, has always led to my digging my heels in to a refusal. I don’t know how I only just realised that, but it was only recently I realised that that was the reason I couldn’t exercise.

    When I first learnt about PDA, I identified with every part but couldn’t see the avoidance. I assumed though, correctly, that likely the demand avoidance was there but I was disconnected from it. I used to be very dissociative and this has happened much less since I realised this and attuned to my demand anxiety.

    I learnt to fawn, because of responses to my demand avoidance, so that aspect of PDA had become very masked.

    However, I have always refused with more intensity the more I am encouraged. That realisation has dispelled any imposter syndrome that I had somehow tricked my assessor.

  • PDA and agency

    It strikes me that PDA impairs agency.

    When we respond to ‘you should’ or hunger or really wanting to do something with a hard no.. we have lost our agency.

    I feel this might actually be more central than autonomy seeking, as not all PDAers claim to experience a drive for autonomy. Responding to expectation with avoidance however, always affects our agency.

    Interestingly, realising this.. makes me feel controlled. For example, I have been reacting to encouragement to exercise with a hard No, you can’t make me. I.e. I’m being a typical PDAer. But I’m also being a PDAer who is being controlled.

    My therapist stated that a healthy PDAer acts from choice and at the time I wasn’t convinced. Thinking about agency makes that make sense though: avoiding is being just as controlled as complying, just in the opposite direction.

    So I suppose the work is to learn to respond to encouragement with ‘I will do it if I want to’ rather than ‘You can’t make me’.

  • Having a future, once more

    When I was manic, I declared I’d become a human rights lawyer. This was grandiose, I wouldn’t get through law school. I do have an interest in human rights, and so I’ve been researching alternative careers in the field that don’t require law school.

    It feels so good to have options around my career. In my 20s I was heart set on clinical psychologist (because I wanted to offer people better services than my friends were offered). I dropped out of undergrad, and since then, learnt that you can’t overthrow a system by being the system. So I moved on from that goal. It felt like a loss initially, but it really wasn’t.

    Now I’m looking at working in local autism policy, or autism research, human rights work, or setting up a peer support company.

    times are exciting again, finally .. after 6 years of stagnation after my first manic episode and not being offered any help to regain my functioning,

    I now have supported housing (which is limited, for reasons) and living here and recovering from mania has shifted my mindset into thinking about the future again. This is why I call this period of time a metanoia.

    It’s bloody amazing.

    What helps in all this, is learning about the idea of the PDA flow. This sort of stuff is exactly my PDA flow.. and I’ve been so much more motivated to be functional in life because I know where my flow lies again. Existing disconnected from the flow seems to be a surefire way to be depressed for me. Even when I was manic, I was finding my flow again, and that was a very good thing.

  • Autism understood

    Autism understood – linking to this to help boost this neuroaffirming site by spectrum gaming for autistic young people to understand autism when newly diagnosed. Spectrum gaming do an awful lot of work with the PDA community, supporting young PDAers

  • Update

    Seems like it’s approaching time to try and step things up a gear.. I’m ranking much higher on the local housing register bidding system. I’d like staff to think I’m ready to move on when I get offered a place, so I need to start meeting all the criteria on the flat inspections each month.

    Which, is of course, a demand I’m placing on myself. It’s a necessary demand, with a good reason, which helps.

    I think I will need to offer myself patience as I try to make progress on this. I’ve gotten into a rhythm with tidying regularly, and usually hoovering as well. Now it’s mainly cleaning tasks left, and getting into a rhythm with those.

    I’ve been using https://finchcare.com/ to give me reminders for these care task. I’ve set them up so it’s broken down into individual elements, so there’s ‘bathroom sink’ cleaning day, and ‘toilet’ cleaning day. Never having to tackle too much really helps.

    I’m holding out hope that the Autism Support Worker referral turns into something useful – someone who can help me plan food that meets sensory and nutritional needs would be a big help.

    For today, I’ve cooked vegetables with my meal, hoovered and just given the bath a clean, so that is something.