PDA fae

Tag: demand anxiety

  • 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”.

  • 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.

  • Update

    Recently I’ve noticed myself fawning more again. It feels like the only way that people will accept me, that overt demand avoidance is met only with rejection, judgement, and attempts at gaining compliance.

    I don’t like the experience of fawning. It’s a situation of taking my demand anxiety and shoving it deep inside to where I can no longer feel it , and going against my own nature to meet another person’s desires. It leaves me doubting whether I am actually PDA, if I am able to be so compliant.

    But then, I still need carers to help me manage day to day activities. I avoid getting out of bed, or going to bed. I still only shower every other day, because daily is a demand too far.

    Sometimes my PDA is less obvious for a stretch at a time – PDA is a fluctuating disability where capacity varies. No doubt times will change, and I’ll notice my demand anxiety more at some point in the near future.

  • Other people’s enthusiasm

    I’ve been reading back through this blog, and it struck me – possibly my biggest trigger for demand anxiety is when other people are Super Enthusiastic!

    E.g. Oh I really wanna play this game! Let’s play several rounds!

    Oh you’re doing really well at this, let’s keep going!

    OMG I really love puzzles, and you’re a good help, let’s puzzle right now!

    Sigh. Every damn time, it’s fatiguing. I’ll often join in initially, and find I get a building, creeping sense of demand anxiety and need to stop way before the other person wants to. It’s very frustrating.

    I’m not actually sure what the answer to this is. I don’t like feeling like a “killjoy”, it’s lovely when others are enthusiastic. I just… it’s also hard, and anxiety provoking.

  • Advice for the teens

    Hi, you teeny terror tots

    • learn to accept deadlines as a way to channel your passions
      • whether that’s uni, starting a business, cleanliness, whatever: deadlines are a part of life. Don’t take them too seriously, because the only ultimate one is actual death, but still
    • learn to tidy AND learn to clean
      • Anyway you can, anyway how
      • These are the skills that truly prevent self-neglect
    • I bet you’re a better cook than I am!
      • If not, start out with baking
    • Embrace your own personal form of brilliance
    • Learn to use some form of AAC
      • A big part of PDA is the language aspect, and AAC helps all humans communicate
      • even if it’s just a ‘I’m ok, I’m NOT ok’ wristband – you’ll help all your interpersonal relationships
    • Learn to be ok with your own company, and learn when you’re getting too intense about one specific person
      • No one loves being the focus of a special interest/a favourite person – not even your partner
    • Forge your own paths, please: we’ve all got ways to shine.
    • Also; let’s teach this world the beauty of stimming, eh?

  • How I manage hygiene now

    So as a PDAer, obviously I’ve avoided this in the past. I went a decade without brushing my teeth regularly in my twenties – and now I face the consequences.

    As the PDA society’s recently shared graphics show, the consequences aren’t enough to motivate PDAers. In face it can make it harder.

    But what does help?

    Novelty can make a big difference. For me that’s:

    • Hismile flavoured toothpaste, keeping multiple flavours in stock
    • mixing up my toothbrushes
    • mixing up the time of day
    • getting dental cleans, with sedation to make up for what I can’t manage

    For kids:

    • take the expectation away entirely, even if it means it goes missed for a while.
    • look to see if you have a specialist NHS dental clinic for neurodivergent and anxious patients (for adults too – I’m on the waitlist for one!)
    • failing that, there are dental practices that specialise in anxious patients that can do a dental clean in a sensitive manner and xrays too
    • mix up the toothbrushes – that might mean letting them use (an appropriate softness) adult brush, or mixing up which themed kids brush they get

    Work with your dentist, obviously, to get the best care: but ultimately, brushing is better than not, and if you can’t, you can’t.

    When it comes to showers my tricks for me are:

    • wash every other day
    • keep them short and sweet OR take a long time to enjoy the heat of the water
    • use multiple big towels to keep warm, and because I dry in my bedroom, to keep the bed and floor dry (bathrooms are too cramped for me to co-ordinate drying properly in)
    • using condition and a wide toothed comb to detangle my hair (some find brushing UP works better than down)
    • I let my hair air dry, which has the benefit of not heat damaging it!

    You could also play music, request that no one ask you to shower (I live alone and get to shower on my own timetable), shower at the time that works for you, use smelly products OR unscented sanex/simple products. Use fancy scrubbing devices that meet your sensory needs. Get a dryrobe to wrap in to get immediately warm.

    There’s always a way to bring novelty and sensory accommodations in.

    However: sometimes all of the novelty and sensory needs meeting just won’t do it. You just have to drop the expectation entirely, without a ‘how do I get my PDAer to shower/brush their teeth?!’