PDA fae

Tag: neurodivergence

  • 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.

  • What I hope for..

    .. when I write here.

    I hope that an unhatched PDAer (credit goes to @autismsupsoc) finds this page, and begins to find themselves.

    I hope that by sharing what helps me function, a fellow PDAer might find something that helps them, or it might spur an idea of their own to help themselves.

    I hope allists learn about a little known area of the autism experience.

    I hope parents get a sense of adult life with PDA.

    I hope to better understand myself.

  • 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.)

  • 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.

  • A Kind Of Spark

    This is a couple of days late, but I was lucky enough to catch the BBC interview of the author of A Kind of Spark, and the three lead actors from the series.

    If you haven’t heard of this yet, it’s an Autistic series. The author, Ellie McNicoll is #ActuallyAutistic, as were the three actors playing the lead characters. It was really quite something to see four women sitting on BBC Breakfast discussing masking, and the difficulties of getting diagnosed as women on the spectrum.

    I’m really looking forward to watching this series, which will be on CBBC and Iplayer for those in the UK.

  • 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.