PDA fae

Category: PDA

  • A surprise discovery!

    I found some Open University courses on cybersecurity, and AI today, that I decided to work through for something to do (and also because learning python might come in handy in my future career maybe. Anything for a competitive edge eh?)

    In the course of working on these, it suggested asking microsoft co-pilot about something you know a lot about, to check it’s content for accuracy. So of course, my topic of choice was PDA. The content it generated seems pretty accurate, maybe because not many sources discuss PDA, so it’s limited in what it can draw from – meaning misinformation in the training data might be more limited than it would be for other topics, perhaps.

    Over the course of entering prompts, we reached a point of copilot suggesting I could ask it to demonstrate how declarative language would work in a series of roleplays (Note: inputting the word roleplay doesn’t work, as it assumes the word is meant sexually. However, there are wordings that circumvent this and allow you to continue on).

    It provides a scenario and asks you to attempt to find declarative wording to avoid being demanding. It then offers either a refinement, or a new scenario to practice with. It’s able to offer workplace, family, and friends scenarios, and possibly others.

    I’m not one to advocate for AI usually, as I feel it often represents theft of intellectual and creative property. However, this is a low effort, no cost means of practicing language skills that might make a real difference to the PDAers in your life. I couldn’t pass up passing that on!

  • Update

    Recently I’ve noticed myself fawning more again. It feels like the only way that people will accept me, that overt demand avoidance is met only with rejection, judgement, and attempts at gaining compliance.

    I don’t like the experience of fawning. It’s a situation of taking my demand anxiety and shoving it deep inside to where I can no longer feel it , and going against my own nature to meet another person’s desires. It leaves me doubting whether I am actually PDA, if I am able to be so compliant.

    But then, I still need carers to help me manage day to day activities. I avoid getting out of bed, or going to bed. I still only shower every other day, because daily is a demand too far.

    Sometimes my PDA is less obvious for a stretch at a time – PDA is a fluctuating disability where capacity varies. No doubt times will change, and I’ll notice my demand anxiety more at some point in the near future.

  • Autotelic

    I’ve just been reminded of this concept by a reel on Instagram, which I’ve shared to my stories there (https://www.instagram.com/pda.fae/). I first learnt of being autotelic through discussion with a fellow PDAer on Instagram in 2021, and upon rediscovering it, I’m sad that I forgot it.

    It’s the idea of carrying out an activity for the joy of the process, not the outcome. In other words, for the reason of internal motivation, rather than external, such as grades, awards, medals, a new job. Writing a story for the joy of storytelling, not with the goal of publishing.

    This can be a good way for PDAers to pursue autonomy. Working from internal motivation removes others expectations, and ensures that we’re working on what we want to work on, rather than what we “want to want to do”. It’s a way of following our flow.

  • Autonomy struggles

    I’ve realised tonight that I’m struggling at home due to an autonomy loss.

    I’d autonomously choose to have someone around to talk to. Or at least, friends to meet up with for conversation in the evenings/call on the phone. I am craving conversation in the hours when I am alone.

    That’s making everything else I could fill my time with feel like a loss of autonomy. I do love crafting, but it’s not conversation. It’s not company.

    I should be excited to get a cat, but you can’t hold a conversation with a cat.

    I just thrive on conversation, to the point I tend to drive most people nuts as they generally need some time of peace and quiet. I have no idea how to meet this autonomous drive of mine, and it leaves me feeling like a problem. No one else seems to have this drive to just talk at length, and at any rate, I don’t know anyone for evening conversation.

    I’m not sure what the answer to this is. It feels good to identify it though, maybe it’s the first step to an answer.

  • PDAfae discord

    I’m working on creating a PDAfae discord for those who would like a place to socialise with fellow PDAers/parents of PDAers.

    Overtime I will need some moderators to support this effort, please feel free to email me at PDAfaeATgmail.com (replace the AT with an @) to discuss this.

    I will also be sharing this on facebook, and in facebook groups, and instagram.

  • Self-acceptance

    A little while back Comfortandkindness shared this post on Instagram, talking about the difference between many books on ADHD and autism, in that the latter foster more self acceptance, as opposed to tips and tricks to function better.

    It makes me wonder if I’ve had enough focus on self-acceptance of PDA life. I know my recent experience has been shaped by my attempting to regain functioning lost through bipolar episodes and burn out. I don’t want that experience to lead to a point of treating my PDA as something to be “fixed” though.

    A PDA neurotype leads to a very distinct way of being in the world. Like comfortandkindness says in her post, that way of being isn’t a problem to be solved. It’s something we can accept and embrace.

  • Equalising and wards

    Equalising is a commonly discussed term when it comes to PDA kiddos. I’m not sure though, that adults are entirely “above” doing so, when under enough stress.

    As in, for me, being on wards induces exactly this. There’s a known “us and them” effect on wards, especially NHS wards. Staff are the Us, patients are the Them. We, who are Well, Those who are Unwell.

    As a PDAer, I am effectively allergic to this entire environment. It’s so stressful. I can barely cope with hierarchy at the best of times, and definitely not completely arbitrary “we’re the Staff, you are the patients” attitudes. (This forms part of my personal thinking about PDA is that we seem to come in three stripes: eglatarian, communicator or negotiator, based on which of the criteria we have most strongly. This isn’t based on anything overly scientific, just a feeling I get from observing, interacting with, and being a PDAer. I might post more on this in the future – depending on what happens with demand avoidance!) I definitely really relate to descriptions around intolerance of authority and hierarchy – as a constant trait, compared to my demand avoidance which can actually fluctuate quite dramatically.

    As a result, these environments cause me to equalise. This can take a more benign form of addressing everyone in the place as a human who might be friendly, it can take the form of giving a staff member a screaming dressing down. It’s not fun, it does get me in trouble. It’s why I really need to make a big push now to stay out of psych wards, because well, they SUCK. They’re not a fit environment for any PDAer, no matter what mental health problems we have going on – far too overly restrictive. When you mix that with a poor mental state, everything goes haywire.

    This is a big reason I would say, if you know you do have severe mental health problems and suspect PDA: it is very worth saving for that specific modifier in your diagnosis. Unfortunately, the NHS is only willing to include a PDA modifier in children (in some trusts). My Dr Gloria Dura Vila diagnosis has changed my life as a person living with bipolar type 1. It means the wards know they need to add support in, and that I can justify that that support needs to work very differently than they might expect. It backs up my self-advocacy efforts, and that’s invaluable – otherwise who could understand an equalising adult?

    Equalising is not “good behaviour”, and I find the best thing I can do as an adult is seek out the environments that don’t provoke it. Living in my own place, in the community, with greater control over the environments I find myself in is a big part of this. For me that’s going to mean, complying with my clopixol injections and doing my best to thrive now. It’s been a rough few years, but here’s hoping I can head onwards and upwards now!

  • Other people’s enthusiasm

    I’ve been reading back through this blog, and it struck me – possibly my biggest trigger for demand anxiety is when other people are Super Enthusiastic!

    E.g. Oh I really wanna play this game! Let’s play several rounds!

    Oh you’re doing really well at this, let’s keep going!

    OMG I really love puzzles, and you’re a good help, let’s puzzle right now!

    Sigh. Every damn time, it’s fatiguing. I’ll often join in initially, and find I get a building, creeping sense of demand anxiety and need to stop way before the other person wants to. It’s very frustrating.

    I’m not actually sure what the answer to this is. I don’t like feeling like a “killjoy”, it’s lovely when others are enthusiastic. I just… it’s also hard, and anxiety provoking.

  • What if..

    I’m not actually autistic?

    What if PDA is it’s own neurotype?

    What if it’s an epigenetic related neurotype – i.e. rooted in neurodivergent trauma, but inheritable mainly through the mother line?

    What if being a super social PDAer actually makes you allistic, but also highly neurodivergent?

    What if PDA can be researched enough to prove this? What if I’m not able to, when I know so much about my own hypotheses, methods I’d use..

    What if there’s a point I have to give up, and hand over my passion to another researcher because I’m not able?

    What if, though, it does all work out? What if I can work this hard? What if I can become a truly high flying PDAer – with all my disabled complexity?

    What if, what if, what if?

    One’s thing for sure, I agree with that Newcastle Uni research that the PDA brain has an “intolerance for uncertainty”!

  • Advice for the teens

    Hi, you teeny terror tots

    • learn to accept deadlines as a way to channel your passions
      • whether that’s uni, starting a business, cleanliness, whatever: deadlines are a part of life. Don’t take them too seriously, because the only ultimate one is actual death, but still
    • learn to tidy AND learn to clean
      • Anyway you can, anyway how
      • These are the skills that truly prevent self-neglect
    • I bet you’re a better cook than I am!
      • If not, start out with baking
    • Embrace your own personal form of brilliance
    • Learn to use some form of AAC
      • A big part of PDA is the language aspect, and AAC helps all humans communicate
      • even if it’s just a ‘I’m ok, I’m NOT ok’ wristband – you’ll help all your interpersonal relationships
    • Learn to be ok with your own company, and learn when you’re getting too intense about one specific person
      • No one loves being the focus of a special interest/a favourite person – not even your partner
    • Forge your own paths, please: we’ve all got ways to shine.
    • Also; let’s teach this world the beauty of stimming, eh?