PDA fae

Tag: PDA

  • PDAer frustrations

    Note: In the following post, I am speaking only for myself, and to my own experiences. AuDHDers may have their own experiences of AuDHD, ADHDers may again have experiences that differ from what I describe below. This is valid.

    As an adult PDAer in mental health and trauma recovery, attempting to learn the life skills that allow for functioning:

    Sometimes I really really wish I “just” had ADHD. Or even AuDHD. But not this PDA stuff.

    Not because I think ADHD/AuDHD is challenge free, or easy, or whatever.

    But because the strategies/approaches/tools/whatever you want to call them, to address the challenges that things like poor executive function, or time blindness, or even Autistic inertia cause are:

    • a lot easier to find out in the world, pre-created for you
    • a lot easier to think of for myself
    • would be a lot easier to apply without PDA, because there’s a way in which the expectation to apply the tools is a demand even as whilst it’s a desired thing
    • generally seem more reliably effective than PDA tools.

    For example, breaking down tidying into “5 things: rubbish, dishes, laundry, things with a home and things without a home” always answers the struggle of looking at a messy room and knowing what to do with it. It won’t solve any other issue (task initiation, demands, inertia etc), but that tool is a complete solve to that specific ADHD problem for me.

    Or, visual timers solve issues with estimating how long something will take, knowing how I have left to do something or how long I have to do a task for.

    Whereas managing demands, and demand capacity, is an ebb and a flow of things that works sometimes. And fail spectacularly at other times.

    If my emotion cup is empty enough. If my bodily needs are met well enough. If I’ve been able to avoid something for long enough that the sense of pressure and expectation has decreased – because I *haven’t* had to do it, I’ve been not doing it! If I have enough tools to change up how I approach tasks, to provide novelty often enough. If my mental heath is stable enough. If I am experiencing enough autonomy. Etc etc.

    I might have the demand capacity to do the thing.

    There’s no one tool for ‘having demand capacity’. It’s a whole life approach, to have that capacity just enough of the time. PDA can be very disabling, because life is inherently demanding of adults. (In children, life lacks autonomy, and this is often a bigger problem).

    And on top of that, ADHD and AuDHD are a lot easier for outside people to understand than PDA. They’re an awful lot more logical than demand anxiety is. (Or the pathological need to avoid demands, because PDAers do not agree on what underlies the avoidance – for me it seems to be demand anxiety.) That makes it hard for other people to know how to help, or worse still, feel interested in learning what helps. And worse than that, attempting to help without understanding PDA, in my experience, involves being demanding!

    So being a PDAer is… frustrating, at times, and more so than the other aspects of my neurodevelopmental differences. (It’s not more frustrating than my bipolar, which I count as one of my neurodivergences. That one is just a problem, and one I would absolutely choose not to experience.)

  • Not the way to do it

    Once again, a crafting session at my supported housing involve staff being demanding. I wish they’d understand the more pressure they put me under, the more I’m going to NOT do the thing!

    They don’t seem to understand that PDA applies to any and all demands, and just because something is ‘fun’ doesn’t mean you can’t make it into a demand that will be avoided. In this instance, it turned out I’d made something slightly incorrectly, and I said I couldn’t be bothered to correct it, which lead to,”that’s not the attitude!” and “you should finish what you started!”, followed by a resident chiming in with “don’t be so lazy”.

    Not the way to get any PDAer to do, well, anything. If there’s a correct response it’d be closer to something like “that’s fair, only do what you feel like doing”. I really don’t get why they can’t take that approach, it’s not difficult, and it makes me feel like they think PDA is a load of rubbish that needs a firm hand to enforce taking part.

    I don’t appreciate it. I’m forever reminded that everyone has something they’ll feel absolutely fine forcing other people to do, or attempting to force. As a child, those moments weren’t safe, as an adult… you can’t physically make me, and as I did today, I’m likely to simply leave the situation rather than continue to be in your presence. It’s not something I have to tolerate anymore.

  • Neurodiversity Acceptance Month

    As shown here: https://www.facebook.com/photo/?fbid=674917597975147&set=pcb.675005351299705, the topic of week one is ‘Autism Advocacy’.

    I suppose by writing this blog, my aim is to contribute towards the wealth of autism advocacy available on social media. In particular, I wanted to add to the adult PDAer voice, as most of the PDA work online is by parents for parents. That’s an important perspective, but late diagnosed PDAers need resources too, and we deserve for our voices to be heard.

    Autism advocacy was so important for me learning about my own neurotypes. I was manically hyperfixating on all things neurodivergent for around 6 months before ending up in hospital, which I think contributed to experiencing burn out at the same time and losing my speech for around a month and a half.

    Something I found difficult was that April was early on in my journey, and that month reminded me all the ways my Autistic traits have lead to oppression and trauma. Even just the counter-responses by Autistic advocates in that month was unpleasant. So I’m trying to work to make April a more pleasant experience now, and engage in these blogging events to share a rounded Autistic experience, without directly engaging in the stuff that fights back against Autism Speaks etc.

    Outside of that aspect of Autism advocacy though, I’m so glad for the #actuallyautistic communties on the web, and the people discussing ADHD. I’d never have understood the nature of these neurotypes well enough to realise it was my experience without it. It also helped me feel like there were people out there that understood me, all of me for the first time (particularly meeting fellow PDAers).

    I think it’s actually a really impressive lived experience body of knowledge that is being created, and it deserves to be valued as much as research studies – that are often dehumanising, and from the Allistic perspective, rather than our own. It’s important that we listen to Autistic people about our own lives, what works for us, and what we find traumatising. Autistic adults are best placed to say what will help Autistic children, having lived through that experience.

  • High demand capacity

    I’m having a rare day of low demand anxiety/high demand capacity. Seems slightly odd after the demand that I fix the ways I didn’t meet standards in a room inspection within three days – it has to be said yesterday that made me extremely anxious and tanked my mood.

    I guess a good 17 hour sleep was exactly what I needed in that state, after being awake for 28 hours (fairly common for me). It seems to have restored things, and I can make sense of why the things need to be done, so that helps with the demand anxiety. It also helped that when I wrote out the tasks involved, it was less than I had estimated. Also, a local autism charity offered support to get the more difficult tasks done, after I called them for support in the anxious, dysphoric state.

    What’s been really awesome though, is that I’ve had capacity for hobbies. So far today I’ve knitted a little, played a solo TTRPG called Ironsworn, and played a board game with a friend and staff at the supported housing. After writing this post, I’m going to pick back up a book I haven’t touched in over a month.

    Days like this are rare, and very treasured when they occur.

  • Exercise update

    A couple of times now, I’ve had a little tiny urge to try out some gentle yoga. Acted on it tonight, which feels like a little bit of progress.

    Unfortunately, I learnt that my 30 something year old. spinal fused body finds kneeling, laying, and adopting various positions on the floor rather painful, which is utterly motivation killing. It’s a shame, because gentle, slow yoga feels like the ideal not-overly demanding exercise that’d work for me at the moment. I’m not even sure what I could do to make it less painful, I already have an extra thick mat for padding.

    Maybe something like tai chi would be ideal, again nice and slow, but mostly standing. I ought to find time to get back into swimming as well, haven’t been in a long time and I have plenty of free time. Not that ‘ought to’ is the right approach as a PDAer.

  • Brain says no.

    The current thing my PDA seems to be preventing is exercise. Nothing seems to be helping. Knowing all the good reasons to do so, which is something that usually helps, is just adding to the ‘have to’.

    I don’t know if something like role play might help. It feels like it’d be good if I could find an equivalent to ‘tidy just one thing’, like something very small and simple. I’m not sure what that would be though when it comes to physical activity.

    It really doesn’t help that exercise is just not something that’s very intrinsically motivating to me. I don’t find it particularly enjoyable for the process of it, it’d be all about the results. So it becomes a ‘want to want’ and PDA doesn’t vibe with ‘want to wants’.

    If I weighed less, walking would be easier and thus more motivating. I definitely enjoyed my regular mile or longer walks when I was manic. Unfortunately, with the weight gain from medications, standing and long walks are now painful on my fused spine. So something like brief exercise routines would be easier in that respect but not in terms of intrinsic motivation.

    I wish I had a good answer to the internal ‘No!’ to the idea of exercise, but I really don’t.

  • Stimming

    I’m genuinely surprised I haven’t already written about this. I think one of the biggest parts of my mask was suppressing my stims (and hyperactivity) – in truth I am a wriggly, fidgety stimmy being. Forever drumming my fingers, bouncing my left leg, spinning a fidget spinner. Oh how I wish I’d had fidget spinners as a child!

    I’m not sure if I ever flapped my hands as a child. I started to when I was dating an Autistic woman who had this stim, before I even realised I was Autistic. I would apologise for copying her, but find joining in irresistible. If we’d known about the ways the PDA profile differs from non-PDA autism, I think I’d have gained a diagnosis much sooner (as it was, she said.. “you definitely have sensory processing issues, but you lack the rigidity I’d expect”). Nowadays I tend to shake my hands rather than flap them, as I find that more satisfying.

    Unfortunately, a cost of masking my stims as a kid was developing a skin picking stim. Everything else got me told off, but an actually self-injurious stim was apparently fine? I will never understand. Since I was eight, I have literally skin picked every single day of my life. It’s proven near impossible to stop. I had been making an effort to pre-hospital and I probably ought to try again. I do use multiple much healthier stims now as well, and I hope that’s building an armoury against this stim. It seems to be helping me use the self-injurious stim less, but not yet stop using it at all.

    I’m so glad I rediscovered the joy of stimming. It should be an Autist’s birthright.

  • “Excessive mood swings”

    The week since my trip to London has ended up being very low demand. I’ve mainly just slept and watched tv on my laptop. It’s not felt great, but I suppose I just needed the downtime. I’ve avoided all my household tasks, including ordering in food a few times. It’s so useful to be able to understand these periods in the framework of demand capacity and anxiety.

    I definitely experience the mood fluctuation component of PDA, on top of my bipolar mood swings, and trauma related emotional flashbacks. PDA seems to mean that if I feel lonely, it’s extremely lonely, down is extremely down, excited is extremely excited. I don’t seem to do ‘small’ emotions. Recently I’ve been more mindful of those swings, noticing when they come to an end and when they shift. It’s helping me notice that the bad times aren’t permanent, and that it’s all cyclical. I seem to swing between productive, energised times with more demand capacity… and low energy, low mood times where I easily feel overwhelmed with lots of demand anxiety. It’s something that my previous bipolar medication, sodium valproate, really flattened and looking back I can see how zombified I was on that med – it doesn’t feel surprising that I pulled myself off of it really. Risperidone seems like a much better med for preventing psychotic mania, whilst not preventing my natural emotions.

    Sometimes “excessive mood swings” are really difficult to cope with, especially the ways low moods feel so very low. It’s infinitely preferable to experience them though, than to be completely flat.

  • Non-speaking, briefly

    Something I haven’t mentioned here is that during my stay in a psychiatric ward in 2021-22, I had a brief experience of being non-speaking. I was very manic at the time, and my mind was super busy, so I’m not even sure I was always fully aware that I wasn’t actually saying anything. I do remember pointing to make decisions on what to eat in the dining room though.

    Something that stands out is being told ‘you’re a really good speaker’ by two people when I slowly started to talk again. In general.. lots of people treated me like I had intellectual disability because I wasn’t speaking. One lady did buy me ear defenders, as recommended by her autistic kid… but also a peppa pig colouring book. It definitely feels like most people assumed I was childlike in that phase of my stay. Something else that stands out is my psychiatrist saying the period where I wasn’t talking was ‘scary’, which is hard to know how to interpret.

    I’ve been told that this is likely a form of situational mutism (by L, who previously worked as a speech and language therapist, and also my therapist). L suggested that probably speaking became too great a demand for me, which makes a lot of sense. I have definitely thought about how speaking is a huge demand since this experience, and one that doesn’t feel possible to avoid… but also a degree of tempting to avoid, just sometimes.

  • The intersection of trauma, ADHD and autism

    For many years, the main intrusive traumatic stress symptom I had was rumination. Turns out, an ADHD mind can hyperfocus on trauma, as pointed out by my therapist. My brain will hyperfocus for months, if not years on end on the events and meaning of my trauma – because autistic brains look for the why, and the reason. Unlike allistic brains, finding an explanation really helps autistic people let something be and understand something. Most therapists have said ‘what’s the point, what does the ‘why’ change?’, my current therapist understands that it’s different for autistics.

    It’s not a good thing to hyperfocus on trauma. It becomes the only thing I can think and talk about, which overwhelms the people around me. It’s prevented me from studying properly, and is the main reason I couldn’t study at university. It becomes very literally all consuming.

    Thankfully, understanding my ADHD and PDA helps – it’s the rhyme and reason as to why adults in my life became so forceful and abusive. It’s absolutely not an excuse, but it is an explanation. That alone means my brain has far less to puzzle out and want to make sense of.