PDA fae

Tag: pathological demand avoidance

  • Diagnostic report received

    After three months of waiting, I finally received my diagnostic report! It noted that my demand avoidance was ‘marked’ and causing ‘significant impact on my life’ which.. woah. I did not realise that it was that obvious and the impact so clear. Apparently the assessor had to make significant adjustments to the assessment process for me to be able to complete it, which I hadn’t noticed. It’s interesting that even though I feel as an adult, I fawn and mask, to a trained assessor my need for control was evident.

    It didn’t clearly state which subtype of ADHD I have, but did make references to both inattention and hyperactivity, so I assume it’s considered combined type. At the very least, I was right to identify hyperactivity in myself, as well as manic high energy – those two can be so difficult to distinguish! It didn’t help that during my last manic episode, I was exploring ADHD and explained manic high energy as ADHD. I will need to be careful to distinguish between the two in the future. Possibly noticing an increase in hyperactivity symptoms is a sign of hypomania for myself.

  • Coping skill: tried/trying/to try

    I’m in the process of trialling coping skills to help me meet the demands of every day maintenance and upkeep of my flat, as that’s what I’m struggling with the most in terms of my functioning at the moment.

    So far I have tried:

    • Tidy one thing a day
      • This helps because I’m not trying to pretend to myself that I don’t have to tidy at all, but also doesn’t require too much of myself. This is especially useful when my capacity for this demand is very low, as one thing refers to literally one single item. One item in the bin, back in it’s place, one dish in the sink, just one, and I’m done.
    • Support sessions
      • I’ve used support sessions with staff to get these tasks done. I don’t love this, because it feels like it’s leveraging that I struggle to feel safe to avoid tasks in the presence of other people. It is possible though that it also helps because it provides body doubling, which feels more positive.

    I’m currently trying:

    • Just do five minutes
      • This is something I’ve started using now my capacity for the demand of housekeeping has increased a little. It involves setting a timer for five minutes, and working on a care task. You have permission to stop after the time is up if you want to, but if you got into the flow of the task, you keep going. I find five minutes is a time that I can handle, it’s a time frame I can easily conceptualise and imagine reaching the end of. It makes the task feel finite and thus achievable, as I know I can stop.
    • KC Davis’s five things method for tidying
      • This is most useful for ADHD executive dysfunction. She breaks the task of tidying a room into five categories: rubbish, dishes, laundry, things that have a place and things that do not have a place. This prevents me from looking at a room and just seeing ‘Mess!’ where I can’t work out what to do, and in what order.
    • Keeping laundry in bags for life, rather than putting them away in drawers
      • For a long time, I had been keeping my clean laundry in the bags that I took it down to the laundry in, and then leaving them in my living room. This was the cause of so much clutter, so I needed a better system that still worked for me. One thing KC emphasises is rethinking the ‘rules’ of laundry, and I found that moving all the bags I use into my bedroom, giving each a category of clothing and using one for actually doing laundry creates a system that works for me.

    Things to try:

    • From KC Davies:
      • Using music to aid transitioning to a task
      • Doing jobs partially, giving yourself permission to start
      • Using the wait time e.g. time to boil a kettle, to work on a task
      • Closing duties: a short list of tasks to make the next day easier
    • Role play
      • This is frequently listed as a coping strategy that PDAers make use of, but one that I am not in the habit of using. Having realised my PDA identity, it’s very tempting to explore this and see if it helps me. A common role play is one of being filmed performing care tasks. I think I would role play that I am a carer for someone else perhaps.
    • Telling myself to ‘do the opposite’ so the PDA brain says ‘No I will do it’
    • Reminding myself I can change my mind and stop when I want to
    • Distracting my thoughts from the demand
    • Making a list, and avoiding it with other tasks
    • Limiting the demands I meet each day
    • Adding novelty to the demand
    • First, then
    • Immediacy

  • PDA, at it’s simplest

    Things I should be doing: a. specific physio exercises. b. general, low impact, workouts

    Things I therefore can not do: a. specific physio exercises. b. general, low impact, workouts

  • sensory logging initial findings

    What I’m noticing so far is that I’m a lot more either sensory sensitive, or low registration, than sensory seek or avoid. This seems inline with my therapist’s suggestion that if I’m those first two, and not actively using strategies to manage sensory input, then life becomes stressful and unenjoyable.

    We noticed that I hadn’t recorded much proprioceptive content. There were a few vestibular things I picked up on, such as being very nerve-y on stairs, struggling to balance, and swaying when sitting. The first of those, I had thought was linked to a trauma, but I suppose now it may not be. We also noticed a few items suggesting visual sensivity.

    Going forward, she’s encouraged me to focus on sense each day to capture more detail, and to hopefully with that focus notice more things involving that sense that happen each day.

  • Let me join in, in my own time

    This is something I wish everyone understood about me: that in group activities, please just let me sit and observe initially. Please don’t encourage, pressure, push or expect engagement. Usually, after a period of being allowed to do nothing but observe, the lack of expectation means I’ll get curious/bored and start to engage. It allows me the freedom of engaging on my own terms.

    An example of this working successfully happened on the ward in an OT session. Annie, the OT, had brought polymer clay for people to be creative with. My first response to this type of activity is always self-doubt, feeling whatever I create will be shit. I was so glad when she allowed me to just sit and watch.. which lead to feeling curious, and finding a simple design I thought was both cute and acheiveable. I still have my little polymer clay owl, and it’s special to me.

    Tonight was an example of the opposite to this. My supported housing is holding Christmas crafting sessions in the evenings on Thursdays and Fridays this month. Tonight was devoted to decorating the office space. Unfortunately, my friend and the support worker were very expressive in their expectation that I contribute rather than observe. Immediate demand anxiety ensued. It’s now some time later, and I’m left with low demand capacity even now. It’s interesting to note, having questioned in earlier posts, that I did feel the demand anxiety in response to external demands. I responded with half resistance, half fawning, and the knowledge that I need to communicate my need to be allowed to observe until I’m ready to staff. I’m really hoping that when I receive my report from Dr Gloria Dura Vila’s team, that it will really help them to understand PDA better.

  • Late diagnosis benefits

    I’ve been struggling recently to find life enjoyable. I thought this was because my life was lacking things I needed for fulfilment/satisfaction/contentment and that I needed to find things to add to my life. This was in spite of having a meaningful job, friends at my supported living scheme, meetup groups that I’ve started attending, Christmas to look forward to and secure housing.

    My therapist posited that this might mean it’s not that I need to add anything. Instead, she suggested that, it might be that the unconscious processes of managing demands, sensory needs, energy levels and stimulation levels might be so draining that’s what’s making life hard to enjoy. That was definitely something I hadn’t thought of, but seems worth considering. So, to begin addressing this, she suggested bringing these processes into conscious awareness. I’m starting with sensory needs, recording what I’m over and under responsive to each day. The aim is to move from passive self-regulation, to gaining more ways to actively self-regulate, either sensory seeking or avoiding.

    I’m really hoping that we’re onto something here. Struggling to enjoy life has been a long term problem historically, often only interrupted by the early stages of a manic episode, in which I can entertain myself with my own thoughts. I think in part it’s affected by my tendency to spend a lot of time in low moods. Unfortunately, I can’t take anti-depressants as they will induce a manic episode. Having not been aware of my neurodevelopmental differences for 30 plus years, I had had no way to consider the effects of demands, sensory input and under stimulation. This is where identification of these factors is invaluable, as I can now pay attention and take action directed at these specifically.

    For example, I’ve recently started making use of ear defenders in public. I love that these make me visibly autistic. It’s a neuroaffirming experience to be open and proud of my neurodivergencies, instead of ashamed, masking and feeling weird. Another accommodation we discussed was around meal times. I tend to avoid the fact that I’m eating whilst doing so, essentially dissociating from eating. As a result of our discussion, I gave myself permission to order some ready made Huel meal drinks. We also discussed blending meals, and drinking them rather than eating as a possible way to remove texture based sensory overwhelm.

    It’s so good to finally be able to identify, accept and meet my own needs.

  • Keeping house while drowning

    If you’re on tiktok, you might have come across K.C. Davis’s account, DomesticBlisters. You might even be aware of her book, ‘How to Keep House While Drowning’. Or this might be the first time you’re hearing of them.

    I’d known of them for a while, but wasn’t sure if they’d be helpful when it comes to PDA style issues with keeping house. I was persuaded to get the book when my therapist endorsed KC’s methods. KC has ADHD, and post-partum depression, and her advice feels to me as thought it’s very, very useful for those reasons to be struggling to keep house. It focuses on self-compassion and seeing care tasks (usually known as chores) as morally neutral, rather than something that defines you as good or bad. Great perspective when you’re struggling with low self-esteem, low motivation and low mood. She also has a lot of simple, clear explanations that help with poor executive functioning, e.g. her five things tidying method. This breaks a messy room into five categories: trash, laundry, dishes, things that have a place and things that do not have a place. She advises dealing with each category in turn in order to resolve a messy room. This is a brilliant antidote to the ADHD experience of looking at a messy room and seeing nowhere to begin, something I have frequently experienced.

    I do wish there was a book on keeping house for PDAers. Perhaps it would be the ‘small book of housekeeping demands’ and we’d all avoid even reading it? I feel I’d find it useful to have a resource which included strategies tailored to the PDA experience. It’s tempting to consider a goal of working towards creating that resource, as I find myself wanting to work in adult ND peer support and this would constitute a form of it.

    That sets me to thinking what would be included in such a book. I think Harry Thompson’s concept of table tops and table legs would have to be part of it. I’m not sure a PDAer would manage care tasks on a regular basis if they didn’t form a table leg towards a driving, autonomous PDA current. They are, after all, the very definition of a demand. Something you really should do, something you have to do in life. Something a PDAer is going to therefore avoid like the plague, because having to threatens our personal sense of control.

    I suppose something else I’d put a strong focus on would be outsourcing the care tasks. I would try and encourage people to be self-compassionate about needing to live in supported living, needing a carer or a house-keeper. PDAers need support in life (we all do), and perhaps drafting someone in better suited to meet those demands is the best solution. It might even be so for me, after I move out of supported living, though I’m not sure yet if I’d be allocated the funding for a carer after living here. Maybe over time that will have to be explored, because it would probably be deeply useful for me to have access to that support long term.

    Rest is something I would strongly emphasise. To be fair, KC already includes this in her book, which is good. Everyone needs and deserves rest. PDAers often have a strong need for downtime to recuperate after meeting demands, or to prepare for meeting demands. In particular, demand free time is useful. I would also talk about Tomlin Wilding’s concept of the demand cup, and the corresponding emotion cup. I would want to find some methods in which we can look after the state of both, in order to free up some demand capacity for keeping house.

    But alongside the goal of creating demand capacity for keeping house, I would echo KCs ethos that our space exists to serve us, not us our space. As a PDAer, we’re not going to want to focus all our demand capacity on housekeeping in order to keep up standards (unless, that’s where our PDA current lies, I suppose.) I would place my focus on how we can keep our space functional enough, and how we can accept ourselves and offer ourselves compassion when we just do not have the demand capacity to cope, That’s my favourite thing about KC’s approach: we’re worthy of love, support, and compassion where we are now. We don’t need to meet societal standards of tidy, hygienic, clean, perfect to be worthy. Care tasks are neutral.

  • (untitled)

    Right now I hate being a PDAer.

    My knee dislocated yesterday. Immediately went back into place, but not without agony.

    It’s possible I have a hypermobility condition and I definitely hate that. Can’t cope that this is likely to not be the last time this happens.

    PDAers are known for having intense mood swings. My mood has tanked today. I’m irritable, hostile, angry, tearful.

    My mood, as I’ve said before has been low recently. I’ve been struggling to find enjoyment in life, and worst still, identify when I’ve ever enjoyed life. It’s not a lie to say that every season of my life has been traumatic in it’s own way. A doctor on the first psych ward I was on identified my autistic traits.. and thought I had dysthymia alongside bipolar. I wonder if he might have been on to something. When I’m not manic, I’m low. I don’t really do ‘normal’.

    So today feels like a double whammy of mood disorders and PDA mood swing.

    I feel like no one likes the unmasked me. The intense moods. The demand avoiding. The very real lack of pleasure I experience in life. The verbal hyperactivity. The anxiety.

    I feel like a problem. I feel like time and time again I cause problems.

  • Notes from therapy

    I’ve been worrying for a while that I might be a ‘failure’ at my supported living, in that because I’m PDA as well as mentally ill (it’s mental health supported living), the staff won’t be able to support me to eventually live independently. Most people, when I bring this up, tell me that it’s a process and I’ll make progress over time. To have more self-belief that I can achieve this.

    Unsurprisingly, the person who understood the reason for my worry was my therapist. She understands how disabling PDA, autism and ADHD can be, and said it’s possible I may not be able to. She also stated that being unable to live independently is not a failing. At one point, she praised me for thinking about the future and I said most people tell me to stop trying to think so far into the future. I love that she knows that as an autistic person, I want some sense of certainty and predictability, so I will naturally try and plan the future so I can feel safe.

    We also discussed ways to try and meet independent living tasks. She suggested maybe deadlines would help, or maybe I need someone to say ‘this needs doing Now’. We considered entering tasks in a diary to see if they would create a deadline that helps, or if they create demands that hinder.

    I need to explore further whether using others for prompts is relying on not feeling safe to avoid demands from other people, and whether this is relying on a trauma response. I do agree with my therapist, healthy lies in choice – to comply, or avoid. PDA avoidance isn’t a choice, it’s a threat response generated by the neurotype. My response to demands of complying also does not feel like a choice, it feels like the The Only Safe Option, and it would be nice to feel safe enough to avoid. I suppose though, this should be being able to avoid as a choice.

    I talked about how since discovering PDA I worked on feeling safe enough to actually feel demand anxiety. Taking some time when faced with a demand and being curious about how it made me feel, gently, and discovering that yes, it’s stressful, there’s anxiety. I do wonder though, after the session, if I’m not feeling safe enough to feel demand anxiety in response to demands from other people. I think it might do me good to work on sensing the demand anxiety that arises during interactions, and creating safety to have choices, including the choice to avoid.

  • Hobbies

    I’d love to have a little set of hobbies I regularly return to. Unfortunately I find sustaining engagement in hobbies really, really difficult. I suppose because I want to engage in them, that very desire causes them to become demands – I want to engage in them, and to fill that want, I need to engage with them. Additionally at times, it may be a ‘want to want’, something I want to be in my PDA flow, but actually isn’t. At least, at the moment. Possibly also ADHD may be involved in these difficulties.

    Something I manage to do on a semi-regular basis is knit. Last Christmas I knitted a wreath with the help of my mum, largely over the course of Christmas eve and day. Unfortunately, I didn’t have a lot of demand capacity at the time and was living in a very PDA unfriendly mental health rehab ward, so meeting the demands involved led to me running out of capacity entirely and being discharged back to an acute ward. Or perhaps, not so unfortunately, as that lead to me moving to the supported accommodation which is a much better fit for me.

    At the moment, I’m trying to work on knitting squares to eventually be knitted into a blanket. It’s a very slow going process. I’m focusing on allowing it to be an imperfect project, accepting the mistakes I make as I go. I’m currently on my second ball of wool, having started in around July.

    I’d like to spend time learning to draw, relearning maths and french, and possibly learn some basic BSL. I enjoy embroidery, thought it takes a lot of concentration and I tend to completely balls up eventually. Baking is another pastime that I’ve enjoyed in the past and would like to get back to. I like board games, but don’t have much space to keep many more than I already have (and playing the same ones gets old after a time). There’s a TTRPG called Ironsworn that can be played individually that I want to play through some time. I have a mirrorless camera and get a lot of enjoyment from photography, but rarely know what I could use as a subject for that art. I used to read endlessly, but now struggle to commit to reading, and I’d like to engage in writing more poetry.

    So, we can see that I’m not short of ideas for hobbies. I’m just short on follow through and sustaining them.