PDA fae

Tag: autism

  • Going back to university

    Yesterday I applied for my student finance and disabled students allowance, so it’s real now. I’m definitely planning on returning to university level study – though it might depend on the outcome of my student loan application given I’ve previously studied and received an overpayment. Hoping that works out in my favour!

    It’s exciting, but also very nervewracking.

    What if it wasn’t the fault of mental health, trauma, undiagnosed neurotypes… but just me not being good enough?

    Am I certain, if it was those things, that they won’t cause exactly the same problems again?

    Am I 100% sure I’m thrilled about the world of deadlines, assessments, assignments, citations, references, essays?

    I’m excited to learn new things, I’m excited to have a second chance to achieve a degree. I’m excited for distance learning at a more supportive university. I’m excited for the sense of purpose.

    I’m really hoping that having a better understanding of myself will provide me with better ways to address the challenges I will face. I know I’m going to have to frame studying as something I want to do, not something I have to do – as a goal on the path to living within my PDA flow. I’m also aware now that my brain thrives on novelty, not routine, so finding ways to mix up my studying should help. Equally, I could try role playing an academic, because that might help lessen the felt demands of studying.

    I’m going to be able to get accommodations for a more complete amount of my disabilities now. I especially predict that helping with ADHD, as PDA isn’t as well known or a recognised diagnosis in itself. My hope is that because my diagnostic report specifies PDA that those supporting me will have an awareness and a willingness to be flexible in their approach.

    The only aspects that aren’t covered is my complex trauma history, which can in itself be disabled when I am triggered, and re-experiencing, and potential dyscalculia. I think eventually I will have to seek a private diagnosis for both, likely starting with the dyscalculia as this will affect science modules (especially as I’m going to have to take a biology and chemistry module! Not looking forward to that – but credit requirements and prerequisities makes it necessary).

  • Emotional restoration

    As we know, when it comes to managing demand capacity it’s important to keep an eye on our emotional cup (and if this is new to you, Tomlin Wilding explains here).

    I do best if I make time for things that actively restore my emotional wellbeing. Hobbies are very good for this, the sense of achievement provides a good emotional boost. As does the soothing repetitive nature of many crafts. I’ve also been trying to make time for reading recently, something I used to adore and partake of nearly constantly.

    Equally, meditative practices are beneficial for me. I’ve started listening to meditations as I fall asleep in the past few days. Having a soothing voice to listen to makes the transition to sleep easier, and it’s a very easy time of day to slot a practice in. I’ve previously found loving kindness meditation to be enjoyable, and a positive experience, so I’d be open to using those again if the PDA flow takes me there.

    Staying in the PDA flow as much as possible is another important practice. Not fighting myself, or pushing through, but doing things when they feel ‘right’ and I feel ready. That means not forcing myself to exercise, only doing short bursts of hobbies – or ignoring them when I need to, and finding my own rhythm for the non-negotiable aspects of life. It can be hard for me to intuit where my flow actually is, after years of living outside of it and ignoring it. It might help to use mindful observation to listen to what my mind and body are telling me about what is ‘right’ in the moment, this is something I may work on. Equally, avoiding things that actively make me feel bad is important. A big one in the last six months is realising that tiktok makes me feel absolutely awful mentally. It’s overwhelming, it’s unsatisfying.. not a good use of my time.

    Being in contact with people is also important to me, I get lonely very easily. Additionally, I definitely benefit from having a good amount of anticipation and excitement in my life. These are things I discussed with my therapist who introduced transactional analysis concepts of ‘contact, recognition, incident, sex, stimulation, and structure hungers’. I seem to have a very high drive for incident, and contact, but find structure easily becomes constrictive and depressing. Framing things in a sense of psychological needs, or hungers, provided a very useful way of thinking about the pervasive sense of ‘boredom’ I’d been feeling – my needs weren’t being met, rather than life is unfulfilling.

    Lastly, I want to note the event I made time for tonight, for the first time in a while: an online breathwork event hosted by https://healingjusticeldn.org/. I find it a lovely, soothing space that leaves me feeling fully connected to the here and now and my body. This is probably one of the most emotionally restorative things I could do, and attending is always a pleasure.

    I want to emphasise that I’m talking here about what helps me. It’s ok if your experience differs, none of these things sound appealing, or emotional restoration looks very different for you. I have no wish to imply any sense of demand or expectation on any PDAers out there – borrow what you will from my experience, or ignore it entirely, it’s ok!

  • 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).

  • Neurodiversity Acceptance Month 2

    Something from this weeks themes that stood out to me was “Explain how mental illness is neurodivergence and why that’s important to acknowledge.”

    Neurodivergence is a purposefully non-pathologising, non-medical model term for any brain that differs from the typical. This can be neurodevelopmentally (Autism, ADHD, dyslexia, dyscalculia etc), it can be acquired (traumatic brain injury), and it can be through mental illness. It isn’t about why we’re different, or how we came to be, what matters is that for some reason our brain diverges.

    From the creator of the term: https://twitter.com/UVGKassi/status/1306062363305615360

    A lot of the time I see the time used it’s in a neurodiversity-lite way, where the terms have been repurposed for the medical model, and then it’s limited to the neurodevelopmental. Unfortunately this seems to becoming the widely understood version.This sucks the power from the word, which should stand in opposition to models based around disorder and deficit.

  • 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.

  • 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.

  • April

    Thanks to ‘autism awareness month’ this is easily one of my least favourite times of the year. It has previously served as a reminder of all the ways that the world is unaccepting, if not hostile to Autistics.

    So this year, I’m going to refer to Autism Pride.

    I’ll also be partaking in this https://www.facebook.com/autisticpartygiraffe/posts/pfbid05oq5XPjkZbC6eXo6WjoXfPgodrs1cNTNuUDfiookRBDEVeMWuukbkK3WDP1vBodol on my blog, and https://www.instagram.com/p/CqYuAYThm2O/ on the associated facebook page.