Category: PDA

  • 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.

  • 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.

  • An important article

    Sally Cat’s piece fully articulates all my thinking on why PDA may not be autism at all.

    It very much does seem shoehorned into autism after the removal of PDD-NOS. This was an attempt to remove different types of autism, and now we are left with a “subtype”, that doesn’t have a true diagnostic home.

    It’s a frustrating home, and one I hope we can build enough research for to resolve for the next editions of the DSM and ICD.

  • 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.