PDA fae

Category: emotional wellbeing

  • Working with my brain, not against.

    The first benefit of discovering PDA and realising it applied to me was finding I could finally work “with” my brain. Meaning I could approach life in a way that didn’t leave me fighting with myself every step of the way. Dissociating from demand anxiety. Beginning to learn not to fawn (still working on this). Advocating for myself. Taking demand free time.

    This is true for my other neurodivergences as well (neurodevelopmental or otherwise).

    With dyspraxia, I find it easier to make progress on a craft when I work on a repetitive project. In knitting that was my blanket squares, in crochet it’s doing rows of double crochet that will eventually become an infinity scarf. (See my latest instagram post!) This drills the basic steps into my procedural memory (“muscle memory”). I also try to only learn one new stitch at a time with new projects, or maybe just one new skill – like a joining technique.

    I also focus on physical activity I find easier to coordinate. I don’t worry about team sports where I tend to let the team down. In fact, I don’t tend to bother with competitive sport at all.

    With dyscalculia, long before my diagnosis (but well after my suspicions), I learnt stats procedures “in words”. That is, I learnt the concepts in verbal form, rather than running the formulas over and over. This isn’t as easy to apply to numeracy (it’s hard to write out the concepts of the procedure for calculating a percentage I find.) It helped that Cardiff University taught the procedural concepts thoroughly. This meant I was able to verbalise the steps of a formula, rather than just being given the procedure as formulas. I probably need to practice looking at a formula and breaking it down into it’s constituent verbal concepts.

    With ADHD, it’s things like K.C. Davis’s “five things cleaning”. I struggle to sequence my actions, and approaches like this finally make it possible for me to tidy my room. It can also mean making sure I get more physical activity as this slows down my mind.

    When it comes to bipolar, it’s about working to get enough sleep. Taking meds religiously. Watching for warning signs.. but also keeping enough factors that promote well-being in your life.

    It’s also about meeting your sensory needs. I now know I find visual input very over-stimulating for example. So I wear sunglasses on sunny days. I go to smaller supermarkets where there’s fewer products and aisles. I allow myself to eat in a way that meets my sensory needs and don’t apologise for it.

    And on top of that, it’s allowing myself to stim and fidget. I was forever told to “sit still”, “stop fidgeting” as a kid. Now I know it’s a neurological need, and I meet it.

    Knowing you’re neurodivergent really is more than half the battle.

  • Update on “Autotelic”

    I previously posted the following

    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.

    I struggle with living up to this, because external motivation is so embedded in daily life. I’ve been taught to work on the basis of outcome, and aiming for a good one. It’s hard to see how one can be autotelic when an external outcome is present. E.g. studying for the process of studying, when assignments lead to a grade.

    However, I am reminded of the British olympic rock climber, who didn’t place in the medals. The commentator was surprised that he said he didn’t mind. He didn’t climb for a medal, but because he loved climbing.

    So, I think on how he could have won a medal. Would that mean he wasn’t climbing based on intrinsic motivation?

    I don’t think so. It just would have been an outcome that happened. So I try to shift my thinking to: there may be an outcome of any nature, but that doesn’t have to make the outcome the reason. I can act from the joy of the process, regardless of the presence of an outcome, and I can be truer to my own self as a result.

  • Update on previous post

    My last post discussed ways to tackle rumination. I’ve recently been prescribed a med to help me sleep, that also works on anxiety. This made it clear just how anxious I am. It also made me realise I’m not really depressed, it’s just the anxiety feels awful (I’m experiencing enjoyment for one thing).

    One of the suggested coping tools was creating a soothing mantra. I wasn’t sure this would be for me at the time of writing the last post.

    Last night though, I found myself contemplating the idea of change, and whether that could be positive. I really struggle with this. I feel that the evidence suggests that life never changes for the better.

    However, I ended up thinking “that type of change is plausible”, which I couldn’t fight against. Not possible, not inevitable, not likely. Just plausible, which of course it must be.

    So I tried repeating it to myself. I experienced that as very soothing, and it prevented the anxious thoughts from starting. This was despite forgetting to take the sleep medication. I was surprised, and very pleased, with this effect.

    I got about 16 hours sleep yesterday, so I’m awake at nearly 4am because I didn’t feel tired. For once, not because I’m too anxious.

  • How I cope with “thought looping” (rumination)

    I spend a lot of time, particularly when trying to fall asleep, thinking much the same thoughts over again. Always negative, about the past or future. A common one is “everyone hates you.” I also find myself thinking “I’m not right for anyone”, “I’m too much and yet not enough”, and generally beating myself up. There’s also future related thoughts, anxious in nature. I worry that I’ll always be alone. That I’ll never gain a life I find meaningful. That my disability will prevent me having anything I want in life.

    The title of this post says “how I cope” and maybe that’s a little optimistic. I actually really struggle with these thoughts and have done for a long time. For many years, I ruminated about trauma I had been through, which was horrible.

    So maybe this should be an explanation of ways I, and maybe you, can cope?

    I already journal, and sometimes that just becomes a written form of rumination for me. I find myself covering the same ground day after day. I sometimes try to find a more positive outlook when journalling and this can have a positive effect – but I definitely don’t experience journalling as allowing me to stop holding onto thoughts. This can work well for some people though.

    An idea I’m intrigued by is verbalising, maybe even writing down, the opposite scenario to your anxious worries. Then spending time imagining that instead. I often imagine how more negative scenarios would play out, to help me feel I could cope, but this probably just helps convince me they’ll happen. Imagining the opposite sounds like a better way to do things, I reckon.

    Playing a lengthy meditation can help soothe my mind whilst I’m waiting to fall asleep. For the duration, it takes my mind away from those loops by redirecting me to the audio and my breath. It’s not a complete cure, but it is a good way to get some respite.

    Something else that’s suggested is using a mantra. I’m not sure this would work for me, because it already feels demanding to keep that kind of thing up. That, and very out of character for me. Perhaps I should give it more of a try, but I don’t think this is for me.

    Those are the suggestions I think could work whilst trying to fall asleep. There’s also exercise, and distractions and other more active strategies for the day time. Obviously, these aren’t an option when you’re in bed.

    Where I sourced my suggestions

    attncenter and ADDitudemag

  • Struggles and self care

    Recently I’ve been struggling a little. Not so much with mood, more with anxiety, chronic understimulation (and comparative overstimulation), insomnia, and resulting distress. I am worried that the insomnia in particular will eventually affect my mood. Me and my psychiatrist do have a planned med to add in if my mood does wobble. He’s not a fan of polypharmacy, so is choosing to keep to just lamotrigine for now.

    Why just lamotrigine? Clopixol injections became way too much for me. Partially because I found it more demanding than tablets, partially because travel is making me increasingly anxious. Mainly though, because I have a lot of medical trauma and injections were causing me increasing distress.

    The anxiety is caused largely by my loneliness. I guess I forgot to mention that earlier. I feel, though it’s likely not true, that I struggle more than the average autistic person with making and sustaining connections. This is based on seeing most Autistic people talk about their romantic partner, their handful of close friends, and suchlike. I have none of those. I’ve also met a handful of people recently, and just can not form a bond with them. Maybe it’s six of one, half a dozen of the other (literally, equally our faults). It’s hard not to feel, though, that it’s solely because of everything listed in my autism report that concluded with “another reason El will struggle to make and keep friends”.

    This anxiety centres on the worries that:

    • nothing about this will ever change
    • is it because there is something inherently wrong with me
    • how will I ever enjoy life or find meaning

    Finally, the chronic understimulation of spending all my time alone when I am at home. Additionally, much of my time outside the house is spent alone, aside from around 4 hours at the local community hub. I have a pet theory that this severe understimulation is leading to an intolerance to any level of increased stimulation that occurs, whilst also in itself deteriorating my situation. I am not sure though, certainly I don’t expect there to be any research out there that would confirm that this is a phenomenon.

    So the end result of this is that last night I ended up experiencing a lot of distress. I had spent my sunday in a new way: getting a taxi ride to spend time in the local costa and entertain myself around people. A taxi because there is no bus provision here on Sundays. Very expensive, and not just because of the taxis.

    Overstimulation in comparison to my norm, for one. Also seeing a lot of people in groups, heightened my loneliness. I then tried reaching out to the few internet connections I had, but struggled with feeling to negative. Mainly because people responded in a way that suggested that. I texted a helpline, which vaguely helped.

    In the end, at 10pm I called my mum and she helped me co-regulate. This made the rest of my night awake – yes, the full night till 6am – manageable. Still awful though. I had been awake since 3:30pm the previous day, and had burnt through my ‘try this now to pass time’ capacity. So I spent numerous hours doing nothing but feeling crappy.

    I can see that now as taking much needed low demand time. Not quite “demand free” because my emotions felt demanding. However, it also meant I managed to “sit with” my emotions. I can recognise both of these as self-caring responses. Eventually I felt able to start to do little things to pass the time, and became sleepy at 6am.

    My self-care has continued today. I spent some time with family, and as planned, my mum is here with me now sleeping over the night. I have taken some demand free time. I have tried to move my tiktok feed to a more positive one. I also spent about half an hour simply sitting and playing with my collection of stim toys. I often forget how important stimming is to ADHD and autistic nervous systems. I’ve also spent time journalling.

    So tonight is a lot more bearable, even if I am still awake at the wrong time.

  • Being PDA in an allistic world

    It’s a hard existence for sure! I’m sure many PDAers born in the 80s and 90s can relate to the experience of growing up misunderstood by everybody. Parents, teachers, nearly every adult we interacted with took our avoidance and demand anxiety for defiance. I know I was met with harsh treatment (and worse) to gain compliance, and I still very frequently struggle to feel safe enough to do anything but fawn.

    Many allistic people view avoidance of a “reasonable” request as defiance, entitlement and/or laziness. They don’t see any other explanation. This seems to be likely, to me, be due to there not being any other reason to not engage in communally orientated behaviours (i.e. complying) for allistic people. That’s just my perception, based on living around them though. Even though many people feel that they don’t like being told what to do, it’s still felt that not doing so is just defiance. They struggle to comprehend going beyond mere dislike, to severe paralysing anxiety that prevents action.

    As a result, many resort to strategies and approaches that just make things worse. I’d hope most don’t resort to violence, intimidation and humiliation – but I certainly know these things can happen to PDA children! I often feel that everyone has something they will use some level of force to obtain compliance and this leaves me feeling very scared at times.

    I really wish I could find more people willing to use a PDA friendly approach. It’d include gentler language, such as declarative phrasing. Challenging hierarchy and “have tos”, allowing for flexibility and collaboration, and respecting my need for demand free time.

    In the meantime, there’s work for me to do in supporting myself, regardless of anyone else’s attitude. I could learn to use gentler phrasing with myself – I still often say “I should/I need to”. I would greatly benefit from feeling more able to set boundaries around my willingness to comply. I am at least becoming stronger at self-advocacy, for example, creating the PDA flipbook to help professionals understand me.

    Something I’d really like for the future is to find more neurokin to connect with. I really enjoy interacting with PDAers, it makes me feel like I “make sense”.

  • Mood update

    Recently I’ve been feeling pretty terrible. My mood episode that started at the end of last year has settled into a pretty standard depressive episode.

    It’s not helped that I am so socially isolated, with little opportunity for addressing this. There’s nothing out there, where I am, for isolated 30 somethings to meet each other. I’m spending most of my time around people 20 – 30 years older than me! It’s not good for me at all, I need friends my own age.

    I’ve always struggled with interpersonal relationships though. This feeds into my “feeling terrible”, in particular “feeling terrible about myself”. I feel like I’m somehow defective that I can’t forge lasting connections with other people. It feels that my current circumstances are somehow a reflection on myself – that if I was someone else, I wouldn’t even find myself in this position.

    I’m also seriously doubting my ability to achieve anything in life, beyond living on benefits and just existing. I’m starting to feel that I will inevitably end up back in hospital in the not too distant future, and that this is what my life looks like going forward.

    There’s a lot of repair to do, evidently, from these last five years. Ever since lockdown was first announced, my life was turned upon its head. The stress has caused my mood disorder to worsen severely. Everything has been turbulent and unstable. It’s very hard to imagine any sense of stability could return, particularly after this latest episode.

    I have to hope that we find the right medication, at the right dose, that offers me quality of life without being life shortening. It’s very easy to feel that a life with bipolar is a life not worth living at the moment – everything I might have wanted, I barely have.

  • 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.

  • 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!

  • 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”!