PDA fae

Category: PDA

  • PDA + trauma = ?

    When I started this blog, I wanted to share the perspective of a PDAer living with complex trauma. One of the key ways that affects my PDA presentation is that I only barely meet the criteria of using ‘socially skilled avoidance’. Because it never worked. It was never safe to try. Or people would push me so hard, I’d rocket up the triangle shown by the PDA society here.

    I’ve mentioned before here that I learnt to fawn for control, everywhere. It’s hard to know where the balance lies when it comes to healing the trauma response, unmasking, and being healthy. My therapist emphasises choice – choosing to engage or avoid, freely, rather than reacting out of trauma or PDA related nervous system activation. This feels to me to related to a drive for autonomy, which always makes a lot of sense to me. I think it would take a life with a lot of autonomy to be able to respond from choice, rather than PDA.

    I don’t know if with time I’ll start to discover and learn the more socially skilled avoidance approaches. It still seems to me that faced with those, most people apply force, even to a fellow adult. NTs are big on compliance, for sure.

    I suspect that I will remain a PDAer that uses outright refusal as a simple way to set boundaries.

  • 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.)

  • A new tool

    I’m forever on the hunt for tools to use to make everyday tasks feel more manageable (it’s important to me to learn to become more functional than I have been for a long time).

    A new one that I’ve found is https://llamalife.co/. It’s very visual, which is great for the time-blind ADHD brain. It can help you stay on task with alerts during a task, and encourages focus on one task at a time.

    At the moment, it might simply be helping because it’s novel. Luckily there’s an entirely free version to use, so I’m happy to experiment and find out if it’s just that or if it’s useful beyond being a new toy.

    I do like ticking off tasks, it’s part of why body doubling pomodoros work for me as well. It gives a sense of achievement as you see things become completed.

    I don’t think this tool does much to reduce demands, and could actually increase them through it’s task list. I’d imagine many PDAers would set up a task, and then start work on something completely different (but that still gets things done, and might be a PDA friendly way to use tools like this).

  • Current hobbies

    My main hobby at the moment is knitting. I’m currently working on knitting blanket squares to sew together into a larger blanket. I find I work on it in fits and starts, sometimes I’ll get quite a lot done, other times I avoid for days or weeks at a time.

    I’m planning on trying to knit a temperature blanket for my dad for his 70th birthday, which will require some sustained work to not fall too far behind. Thankfully there are online weather records, so you can go back in time and catch up.

    I want to learn to crochet and add that to my hobbies. To that end, I picked up a little bumblebee crochet set from The Works today, but so far it’s proving rather difficult. I’m finding it a lot more tricky than I did when I started knitting. I think I’d benefit from having someone to learn from in person, like how I learnt knitting from my mum initially. Videos are good, but sometimes it’d help having someone see what you’re doing and telling you if you’re getting it right or not.

    I’m quite impressed with how well I’ve stuck to working on a knitting project over the past year. The past two Christmasses I’ve created two knitted Christmas decorations. That represents quite a bit of dedicated effort, for me. I find it helps if people don’t suggest ‘why not do some knitting?’ or ask ‘have you knitted at all recently?’ and to not place any expectations on myself. When it’s right, I work on my projects, when it’s not, I don’t.

  • 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.

  • Untypical, by Pete Wharmby

    When I was discovering my neurodevelopmental differences (I don’t say neurodivergences, as I include bipolar in that, which I already know about), I started processing all the trauma that was associated with them. It left me with the feeling that neurotypical society was deeply hostile towards neurodivergents, particularly Autistics.

    So I knew I wanted to read the recent release based on the tagline alone: “How the world isn’t built for Autistic people, and what we should all do about it”. It promised acknowledgement and validation, and that’s exactly what the book delivers. It also offered a sense of hope, that there’s things that can be done, that this hostility isn’t unavoidable.

    My brain isn’t braining very well recently, so it’s hard to find the words to express everything I feel about this book, but I heartily recommend it!

  • “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.

  • Neurokindred

    Something I really feel the lack of now I know more about my neurodivergences is the presence of neurokin in my life. When it comes to the bipolar, I have my neurokin there, one friend with bipolar, another with schizoaffective (and another with schizophrenia), and this feels so good. It’s good to have people who understand being hospitalised, or being psychotic and experiencing delusions. It’s also good that one of those friends is also autistic and ADHD, so I’m not completely alone.

    I’m going to an ADHD support group tomorrow night, so hopefully I will meet some more neurokin there. I also joined an online autism peer support group, which was a great experience earlier this month. I will blog about both of these in the near future.

    What feels particularly lacking is PDA neurokin. We’re not the most common of people, and often we like to interact online. Dannii at PDAourway often refers to her neurokin friends and it always induces a pang of longing for me.. to have numerous friends who are true neurokin, in being PDA and ADHD. It’d be good to have people in my life who truly understood the PDA experience, rather than who were learning about it.