PDA fae

Tag: autism

  • My demand cup, three months on

    Last time I posted about this, it was still feeling pretty small, and easily filled. I think with time, I’m slowly managing to increase the capacity of my demand cup back to the kind of volume it had pre-hospitalisation. Definitely having more autonomy over my life is helping with that. Wards are awful places for me as an ADHD PDAer… dreadfully understimulating, and total loss of autonomy. They’re necessary when I’m deep in psychosis and have no capacity (in the legal sense) and/or insight, but I hope that in future I will be discharged from them much quicker if I ever need them again. This is the advantage of supported housing, because you’re part of the community and have all the freedoms that come with that, just with some extra support.

    My emotional cup is pretty stable, which also helps. I’m not losing capacity in my demand cup because of overflowing emotion from that cup. I’ve also been taking a little demand free time recently, and it definitely helps me recuperate. The novelty of coping techniques worked well, it’s unsure yet if they only worked because they were novel or if they are long term ways to help myself cope with demands.

    When I was hypomanic, I was learning to tune into my demand anxiety for the first time – pausing to notice, how does this expectation, or requirement, make me actually feel, before undertaking the task. I believe I had learnt to dissociate from this demand anxiety, faced with the unsafety of listening to it and attempting to avoid. I learnt that demands very much do incude demand anxiety, and I had been attempting to learn how to balance this with achieving tasks, for example, I usually found I had more demand capacity in the mornings. Unfortunately, circumstances during this time meant that nearly all the communal household tasks in a shared house ended up falling on me, which overloaded me and likely contributed to my mental health crisis. That disrupted my process of learning to understand how to work with my usual demand capacity and anxiety, and rerouted me into working to regain demand capacity for the past 8.5 months. That might perhaps be a useful exercise to mindfully do again, so I can notice when my demand anxiety is higher and why. See if mornings are still an easier time to achieve tasks, and what if any other discoveries I might make.

    Something that needs work is:

    “PDAers need safe people around them, which means people who fundamentally understand that they are not giving everyone a hard time, they are not just lazy or trying to get out of helping or working, they are struggling and need even more love and support. One person is a necessity but having more than this is the only way a PDAer can really thrive.”

    (Tomlin Wilding)

    I find that as PDA is so little known, there’s very few people who get it at all. Ultimately that can feel like, because no one gets PDA, no one gets ‘me’, and that feels very lonely. Staff at my supported living are definitely a long way from understanding this, in group activities there’s often an air of ‘you’re not getting out of it, join in!’ It’s my hope that training from the PDA society might help them move to a place where they do get this, which would be a massive benefit.

  • Happy 2023!!

    It’s a new year, and for once, I’m excited for it. I’m also really happy with the year I’ve left behind. It didn’t have a great start, being sent back to the acute ward from the rehab ward (that is somewhere I would advise is not the right place for any PDAer.. you will not have enough autonomy on a ward to properly regain functioning. I’d definitely recommend supported housing over that), catching covid on that acute ward. I spent ten days isolating in a very understimulating room in January this year, and three months on an understimulating ward. The other problem with being on a ward for 9 months, was that on the acute ward there was next to no demands and as Isaac explains in this video, the longer you go without meeting demands the harder they become to meet.

    So when I was discharged in April last year, to this supported accommodation, I had a double sided problem. I was vastly understimulated – that degree of bored where it’s painful, but also completely out of demand capacity. I spent most of April and May just watching tv in my bed to recuperate (something that would never have been acceptable on the rehab ward, who wanted me to go from no demands on the acute ward, to cooking for myself, cleaning my bedroom, doing my laundry – basically immediately fully functioning). The tv provided just enough low demand stimulation to address one side of the problem, and over time I added in more and more demands. Eventually, I started spending time outside in the garden, which is where my friendships here blossomed. Over time, I started knitting blanket squares, which I am still working on at a very slow, undemanding rate, with the aim of eventually sewing them up into a massive blanket. I also started volunteering at a local charity shop, which provided me with work experience, socialising and something to do with my time.

    A highlight of 2022 that occured around this time was seeing Atypical Rainbow at the Turbine Theatre, near Battersea Power Station, for my 32nd birthday. It was a play about a young autistic actor, and his gay coming out, his experiences as a young boy, his families experience. It was deeply moving, and had me in tears by the end. I think it meant a lot to my mum as well, as she also strongly related to the experiences depicted.

    Not long after this I started my first job (finally well enough to work, this is a big new step for me!) at a local SEN school. I loved the kids, and helping them communicate was a big passion of mine. I learnt though, that I think I’d rather work with adult neurodivergents, in peer support, and also possibly in research into neurodivergence, particularly PDA. Unfortunately, this job had to come to an end in late November. For the end of the year, I’ve been rediscovering twitch streams, and having a very christmassy December. It’s been special, having my own place to decorate how I wanted for Christmas for the first time.

    Going into 2023, I have some worries (family medical issues), and some big hopes. I have four big goals for 2023 which I hope I can achieve. I would absolutely love if this year, I could:

    • return to university – planning on studying the open degree at the OU. This degree has a module where you use previous open educational resource courses towards the module, and I’ve been making a start on these.
    • learn to drive – planning on automatic lessons
    • find a new job – have already been applying, and attended one interview at the end of 2022
    • get involved with ‘survivor’ research in mental health and neurodivergence – to that end, I’ve had some mentorship with the Survivor Research Network, and joined some lived experience panels at Healthwatch and found out the details for my local hospital trusts lived experience panels.

    So clearly, in going on 9 months, I’ve regained a lot of capacity. I’ve also found a lot of things that fit within my personal PDA flow, or act as table legs to that table top. I’m excited for 2023, it’s been a good two hours so far lol, and I’m hopeful for some real wins this year.

  • Christmas Eve

    It’s officially the Christmas period here in the UK now. Today I’m planning on baking with a friend, tomorrow I head to my parents for The Day. It should be a nice, quiet, chill couple of days. My mum and I plan on knitting ornaments for a Christmas Day activity as last year we knitted a wreath and it made for a lovely day. It’s nice to have something to do other than food and presents. It feels like being a kid again, who got to play with presents on Christmas afternoon. (My spellcheck is insisting I capitalise christmas, and that makes me want to refuse!) I’ve found that adult christmasses lack that aspect that childhood christmasses had – most of the presents aren’t something you can interact with that day.

    This is much better christmas than last year. I live in my own flat, rather than on a ward, and that means I have a lot more autonomy. I’ve proved I can handle working, which is a big step this year. I’ve made new friends, and made stronger connections with old friends. I’ve been able to enjoy an advent, rather than just christmas day itself. It’s lovely. I realised a couple of weeks ago, this is my first normal christmas since 2019, and it’s really rather special.

    Merry Christmas to everyone who checks in here! And for any PDAers, far be it from me to order that you must have a merry christmas, have any kind of day you like at all tomorrow.

  • Uncertainty

    One of the key traits of a PDA profile is ‘intolerance of uncertainty’ and for me that’s never stronger than when it applies to uncertainty about what my future looks like. Right now, that’s because of a job interview I had yesterday. I did the best I could, but was also honest about my disabilities, and it could go either way. That means I don’t know what I’ll be doing in two weeks time. Whether life will continue much as it is now, or if I’ll have a new job to adjust to. Somehow it’s worse because it’s relatively close that a big change might take place.

    It’s leaving me feeling out of control. As a result I have very little demand capacity today. Earlier I struggled to get myself to respond to hunger by eating, because my body was expecting food. I used my support meeting to ask for help with the uncertainty, but the staff only know the advice that works for allistic mentally ill people i.e. they gave advice that placed expectations upon me. I may have responded to being given puzzle sheets to ‘keep my mind busy’ by putting them straight in the bin: exerting autonomy is more reparative for me right now than a suggested distraction technique.

    I wish more people had my therapists level of understanding, as she would have known how to help. Or even just to validate my experience, without aiming to fix it. I just need my autonomy re-affirming, and reminders of what I do have control over. Uncertainty is difficult, and maybe always will be. I haven’t seen much discussion of what helps PDAers cope with it, and I’d be intrigued to know what my neurokin do to cope.

  • (untitled)

    Found this graphic on my facebook feed, from the page The Autistic Teacher. It made me consider which of the two sides I fall on for each item:

    • Probably more likely to get upset if plans disrupted, especially as a child. Might occasionally make spontaneous plans, I’d need to mindfully observe myself to work this out
    • Struggle to organise, definitely
    • Impulsively spend!
    • Struggles when others are late (and likely to be early to compensate for bad time keeping)
    • Both: usually i’ll have a special interest I spend time almost casually engaging it, it’s very easy, it’s a low effort thing to spend time on. I’ll also have a range of hobbies that take effort to engage in, but that I can get fixated on
    • Forgetting steps in plans is more likely for me
    • Wanting new experiences, I love novelty.

  • Pretty big success

    For whatever reason, I’ve had a lot more demand capacity recently. Might be something to do with not having work at the moment (transport became untenably expensive), so I have a lot of spare time to get bored in. I’ve been trialling new strategies to help, and they’re making a real difference.

    The first thing that helped was setting a timer for five minutes and giving myself permission to stop after those five minutes if I wanted to. That was a long enough period of time that I could make a real difference in one small area of the flat. It’s a great strategy if I’ve got a middling amount of demand capacity.

    What I didn’t expect to be so effective was roleplaying being a carer. I pretended I was looking at someone else’s flat. Someone else in need of help. Looked, and thought ‘what would help you, pretend person, if I handled it today?’ Then whatever I felt I wanted dealt with was the pretend person’s ‘request’ and that just got me over the hump of demand avoidance. If I’m doing it because ‘I’m helping someone else’ in my head, it’s more like ‘Elliott the Carer’ is tackling the demand, and the threat response lowers.

    So today when I had my support session, especially given that I’d started preparing dinner beforehand, my keyworker was astounded. It was so nice that she was proud of me, but seemed to understand that there may be backwards steps after this rather than a new sustained way of being. I don’t think I’ve reached the stage yet where I will definitely sustain this way of functioning over time. I think it’s a lot more likely that I will have a good time, then a bad, in cycles.

    I think the ‘answer’ will be learning my own ebb and flow. Learning when I just can not, and allowing myself to avoid, learning how to get enough recuperation to rebuild demand capacity, and learning strategies that allow me to make progress when I’m doing a little better in terms of my demand cup.

  • 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

  • Not everything applies

    Whenever people talk about their experiences of their neurodivergence, there’s always something that doesn’t quite resonate with me. Most autistics speak of socialising overload, but for me I get lonely very easily and can find it very difficult to be alone. That often makes me feel like a ‘weird autistic’, sometimes it makes me worry that somehow I tricked my assessor.

    With ADHD I don’t relate to gaining a sudden, new obsession with a topic or hobby, only to lose it a short time later. I suspect this might be because of my PDA making any hobby feel demanding, and possibly the effect of past trauma – I don’t experience ‘interest’ the way I did when I was younger anymore. When I was little I had intense interests in space and dinosaurs, to the point of doing things like self-teaching myself evolution at the age of 8. Over my teen years and 20s, I lost that experience, struggling to find interest in anything and definitely not maintaining any hobbies. It’s not a lie to say that I started to live entirely online, engaging mostly in forums. That might partly explain why I find alone time so difficult, as I struggle to have anything meaningful to fill that time.

    Another experience I struggle to relate to is aiming to carry out one task, only to realise that another needed doing, going to another location .. and finding another task. In general, I’m not sure I relate to many of the inattentive symptoms, though I am still waiting on my report to find out what type of ADHD I have. I suspect it will be hyperactive/impulsive.

    I suppose it’s worth remembering that we don’t need to relate to every single possible trait or aspect before we can claim a neurodivergent identity for ourselves. For example, I’m clearly bipolar, but do not tend to go on big spending sprees when manic.

  • 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