PDA fae

Tag: autism

  • 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.

  • 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”.

  • Sometimes, spontaneity helps

    Just now I was trying to motivate myself to brush my teeth tonight as well as this morning. I really need to try and meet this demand more to protect my teeth and gums. I have gum disease with a lot of recession and wobbly teeth. Of course, the importance ups the level of demand.

    What worked tonight was to acknowledge my resistance and to back off on the pressure. I engaged in other tasks, like unsubscribing to email lists I no longer need. I accepted I may not be able to do this task, no matter how important.

    After a little while, I found myself spontaneously standing up, and heading to the bathroom. No thought, such as ‘let’s go brush my teeth’ preceded this. I just stood up, ready to undertake the action.

    I’ve found this at other times as well, on occasion. It doesn’t always work, but sometimes, allowing spontaneity in action shifts avoidance.

  • The delicate balance

    Recently I’ve been neglecting to make use of the tricks I practiced whilst living in supported housing. Things like “just do five minutes”, using a visual timer, “just prepping”.. I’ve not been using them.

    In part because having carers takes some of the load from me – I can use them to get things done where avoidance makes things difficult. Unfortunately though, this does not foster independence in the long run, and may set me back if I become reliant on this.

    Tonight, I said to myself ‘just wash up five things’ and I ended up nearly clearing all my dirty dishes. I let myself do a half-assed job, knowing that any job worth doing is worth half-assing. That relieved the pressure of demand anxiety, which had been preventing me from a number of tasks recently.

    I have a laundry pile that’s unwieldy. I couldn’t shower yesterday. Days went by with no dishwashing. I still haven’t changed the bedsheets.

    It’s all about making little tiny steps forward. Not pushing too hard, and respecting my PDA for protecting me. Protecting me from overwhelm, burnout, chores themselves. Gently easing into care tasks, and being gentle with my bodymind as it resists and then finds a way to proceed.

    Life with PDA is a delicate balance, it seems.

  • Sports for confidence!

    I’ve signed up for a local scheme called Sports for Confidence. I’m not sure if it’s specific to my county, or nationwide, it might be worth looking out for. In short, it’s a disability specific sports scheme, run by occupational therapists.

    So far I’ve only managed to attend one session. I want to go, it’s great to meet fellow disabled people. I mainly attend the swimming session, or would mainly attend, rather.

    Unfortunately, it can become a demand. The OT expressed strong hopes that I would enjoy the group, that having come once would make it easier to come again. Knowing that the staff really want me to go makes it very demanding for me.

    I do need to be more active and meet more people. I also need OT input in my life (my social worker has referred for mental health OT support as well). Hopefully getting more active might help with my chronic pain from my scoliosis surgery.

    I think what would probably help would be some declarative language around the sessions: I get to go. If I want to, I can attend. The group meets soon, I wonder if I want to go this week.

    Hopefully I can find a way to attend more often, that doesn’t involve simply fawning.

  • An update to my Kofi

    I’ve added a little shop for PDA related PDFs. Right now I have just one, about exploring a potential PDA profile.

    You can check it out here:

    My kofi shop

    I hope this little offering is of use to someone!

  • The “On a narrowboat with no internet signal” game

    Inspired by an episode of Canal Boat Diaries I’d watched (gotta love comfy, gentle tv), where the star, Robbie Cummings found himself at a remote mooring. He experienced the situation as a blessing, inspiring him to undertake routine maintenance and get necessary tasks done.

    This gave me the idea for a little game. I could be on my own little narrowboat of the imagination. At 4am (my sleeping pattern is ever wonky), I turned the internet off and put on my favourite early breakfast show – shout out to Owain Wyn Evans!

    And then I started tackling some household tasks I had been quietly avoiding. Some of them I’d been quietly relying on my carers to just about keep on top of them. Others had just been ignored for weeks.

    Now I have washed up dishes, brushed teeth, shaved legs, and a tidied dining table and desk!

    Sometimes gamification and novelty really shifts the demand anxiety to a place back to where autonomy feels present.

  • Demand avoidance and food

    Something my demand avoidance really affects is my relationship to food and eating. There’s also sensory issues involved, I’m very sensitive to taste and texture.

    Mostly though, my issues with eating stem from demand avoidance, particularly around preparing food. I swing between eating a lot of low effort junk food, and eating out too much for lunch, and then periods of eating very little of anything.

    The latter causes weight loss which always gains me praise, which makes it very appealing to repeat. The former causes weight gain, with the opposite societal effect – disapproval. Particularly from doctors, especially if I dare seek help for my chronic pain (which I tend to avoid and self-medicate for as minimally as possible).

    I find deciding what I’ll want to eat for the week ahead very difficult, and demanding. Even more than that, preparing a proper meal is too many demands for me, so I often eat take out or microwave meals.

    I’ve recently discovered, via tiktok, the idea of a “snackboard” which sometimes makes lunchtime a little easier – it provides variety in a meal and can get me eating fruit and pickled vegetables. Sometimes though, even preparing on of those feels too demanding.

    I really would prefer if, much like sleep, if food just wasn’t needed.

  • A surprise discovery!

    I found some Open University courses on cybersecurity, and AI today, that I decided to work through for something to do (and also because learning python might come in handy in my future career maybe. Anything for a competitive edge eh?)

    In the course of working on these, it suggested asking microsoft co-pilot about something you know a lot about, to check it’s content for accuracy. So of course, my topic of choice was PDA. The content it generated seems pretty accurate, maybe because not many sources discuss PDA, so it’s limited in what it can draw from – meaning misinformation in the training data might be more limited than it would be for other topics, perhaps.

    Over the course of entering prompts, we reached a point of copilot suggesting I could ask it to demonstrate how declarative language would work in a series of roleplays (Note: inputting the word roleplay doesn’t work, as it assumes the word is meant sexually. However, there are wordings that circumvent this and allow you to continue on).

    It provides a scenario and asks you to attempt to find declarative wording to avoid being demanding. It then offers either a refinement, or a new scenario to practice with. It’s able to offer workplace, family, and friends scenarios, and possibly others.

    I’m not one to advocate for AI usually, as I feel it often represents theft of intellectual and creative property. However, this is a low effort, no cost means of practicing language skills that might make a real difference to the PDAers in your life. I couldn’t pass up passing that on!