PDA fae

Category: Update

  • PDA lies in the accommodations needed

    Sometimes, even now with an official diagnosis, keeping this blog and my instagram, having connected with the PDA community…

    … I still sometimes doubt that I’m PDA.

    Sometimes I have quite a lot of demand capacity, and these times can last for long durations – days/weeks.

    In these times, I feel little demand anxiety. I am able to meet requests. I am unbothered, or much less noticeably bothered by the expectations of others foisted onto me.

    I can offer to do things, that I could easily avoid.

    I can meet my own expectations for myself, and my bodily needs.

    In these times, it feels unlikely that I truly have PDA.

    However, in these times, my demand cup is being emptied by something.

    It might be someone else’s support. Or getting good sleep. Or having had a restful enough period, or enough demand free time, or a reduction in anxiety. Or I am spending enough time engaging in special interests (this is my recent situation – I have been reading a lot about queerness, perception, baye’s theorem, spending a lot of time on instagram reading about autism and ADHD).

    The fact that I need these things to cope with expectations and demands is part of PDA itself.

  • Still stuck in hospital

    The wait for housing is taking an awful long time. It turned out that the supported housing option was completely unsuitable, with the expectation that I would share my flat – not appropriate at all when I’ve previously experienced an eviction because I struggled to cope in a shared environment! Luckily the majority of professionals understood this, except for one nurse who I really feel should know me better by now, and not say ‘well it’s just like being on the ward, where you’ve coped.’ – I really have not coped well here at all! So many loud prolonged meltdowns, how that can be regarded as coping I do not understand. I think sometimes some professionals just want the easy option that presents less work for them.

    My care co-ordinator raised the point that a tiny shared flat is not “like for like” compared to my previous single occupancy flat, and I completely agree with him. My mum, my OT and my care co-ordinator were all very against my moving to this flat, and I am very grateful to all of them for their input. Thankfully the OT on the ward secured an acknowledgement from the relevant people that the accommodation did not meet my needs, so it’s not regarded as my making myself wilfully homeless (I believe). He really turned things around in the space of a day, I’ve never known a professional get results so fast, it’s really something. He jokes that he’s getting his training as a housing officer, and he’s probably not far wrong!

    Hopefully it won’t be much longer before everything is resolved and at least for now I’m safe and on a much nicer ward than I was stuck on in 2021. Small blessings.

  • Huge loss of autonomy

    I really did not want to return to supported housing. I find it ridden with expectations, with very little actual support to meet those expectations, and with an attitude that PDA is not relevant.

    Unfortunately, I am being forced to move into a new supported accommodation situation. It’s in a good location, and the facilities are far more modern than the previous set up, which is something but… I have no faith in supported housing anymore. No trust.

    I don’t trust that they will care about my PDA profile, or be willing to work with it appropriately. I absolutely would not have chosen this for myself, but I have been told if I refuse I will be seen as “making myself homeless” because someone I haven’t met has decided that it “meets need”.

    It’s not autism specific housing, so I really don’t see how it’s going to meet my needs. I feel incredibly let down right now.

  • Almond butter autonomy.

    It’s never a good start to a day when at 4am, after a night of pain and no sleep, you develop a craving for almond butter on toast… and have no means of having that for breakfast.

    I’m likely going to struggle to eat breakfast at all. My demand capacity is going to be quite a bit lower. It might seem odd, but a large part of that will be due to the loss of autonomy of the choice of what to eat, not pain or sleep deprivation. Of course, I’d probably cope better if my stress cup wasn’t filled by those things – see Tomlin Wilding’s page for information on ‘cups’.

    Odd as it may seem though, the simple lack of the food I actually want for breakfast – and the inability to pop to a shop beforehand to pick it up, or that it wouldn’t be listed on deliveroo groceries, is a problem. I’m already grumpy just thinking about breakfast without my autonomous choice. Nothing else is going to be a good substitute, which is not ideal when pain has already reduced my appetite.

    Sigh. I foresee a taxi ride to the nearest big supermarket today.

  • Still stuck in an ATU

    It’s tough being in an ATU. There are so many restrictions, even for inpatients just waiting for housing who could be otherwise discharged.

    Bedtimes. Medtimes. Meal times. Must wear shoes times. Must be signed out- can’t use a bloody door! Being checked on at night when trying to sleep.

    It’s enough to drive a PDAer bloody mad! Luckily the staff at the ATU I’m on have been very open to learning about PDA which is super helpful. Perhaps fortunately, my supported housing has had it’s funding withdrawn by the council, so it is closing and I am once again technically homeless.

    We now have a protracted process of working out my needs and what will best meet them. Luckily this time I actually have the autism diagnosis and won’t just be limited to mental health supported housing. I also have a good CPN, who I hope I will be allowed to keep whilst in the community – though some of the local autism supported housing would be outside of his local area. It’s a frustrating system.

  • The wonders of OT sessions

    One of the main interventions on psychiatric units is occupational therapy. I have many reservations about the ethics of detainment, and forced medication, but also mixed feelings as I know I become very vulnerable in the community. When it comes to OT work however, I have had very strong, positive experiences.

    Often it takes me a long time to be able to ‘participate’ in OT sessions, as there is a set activity – which of course is then a demand! However, most, if not all OTs I have met have been very willing to allow me to be in the activity space, and avoiding or subverting the session – so long as I abide by basic non-negotiable rules (which when initially ill can be a challenge).

    Over time however, through that process of being allowed to sit, observe, subvert, wander off when needed, it becomes more and more possible for me to join in – though usually still in a way of my own choosing, especially with arts and crafts groups.

    I have, for example, sat and knitted in groups under the supervision of staff, when everyone else is painting. I’ve painted emotion plates, based on the idea of Rothko art pieces, where the colours convey emotion. Occasionally I’ve been inspired to give painting a go – I painted a salamander after a conversation with another patient, which felt really good. Usually I particularly avoid painting because I have issues with the fine motor skills of using a paintbrush.

    Today, I created a piece of protest art about mad pride. It’s little doodles of aspects of the medical response to mental illness, compared to a more psychosocial, human connection, non-pathologising response to distress. I’m very tempted to keep using these sessions to produce these little posters, and perhaps eventually open an etsy where I can sell prints of my designs (ot perhaps use my kofi page).

    I’m inspired by the work of: sportsbanger, mad covid/the STOP SIM campaign and rachel rowan olive . I’d want to make content about PDA, Autism, mad pride, and disability rights.

  • Demand cup update.

    Making one of these because recently things have changed at my supported housing in a way that may provide me with more demand capability in life.

    In short, I have been offered a ‘quid pro quo’ of I don’t demand too much of them and they will demand much less of me. As in, I just have to keep telling them I’m alive daily, and nothing else.

    That works for me, I can work with that. I like quid pro quo when it’s not corrupt, so yes, if we’re playing this game I’m happy with it. They’ve also asked me to not tell them what ‘PDAers need’ but what ‘I need’ which, sure I can play that game too. They don’t realise that’s a demand, so they’re gonna hear a lot of ‘I need you to understand that’s a demand’ in the near future.

    But what can they say? They demanded it of me. So I’m happy to become the resident broken record of the scheme for them until they learn how to help, well, PDAers.

    Ridiculous I have to do it this way when I have the diagnosis but, fine sure.

  • Low demand lifestyle?

    Am I living a low demand lifestyle? What defines low demand, and how would I tell?

    I’m not claiming I have answers to those, but it is something I want to think about – how many demands are there in my life.

    Living in “move on” supported housing creates demands, because you have to meet expectations to be considered ready to move on. Thus that prevents me from living a truly low demand life. I do have a lot more autonomy here than I had at the rehab ward though, which is good.

    There’s also demands on me because, well. My reason for needed supported housing is more along the lines of autistic skill loss/learning to cope with demand avoidance/executive function issues, than it is mental health issues related. So the support I am offered does not meet my needs, which leaves me to work out how to regain skills on my own.

    I am learning ways to approach doing things that lessens the sense of demand. Whether that’s having an algorithm as to how to tidy or clean (to remove microdemands), avoiding things until it sinks in I don’t have to do them, and other techniques I’ve mentioned on this blog before.

    I think once I am living independently I will actually be able to have a much more low demand lifestyle. I will not have anyone setting expectations on me, and can just work to my own desires – and work on not seeing expectations on myself. I will hopefully by that point be a lot more skilled at regaining skills, and coping with traits of my neurodivergence.

    So right now, I don’t quite have as low demand a lifestyle as I might benefit from, which is hard when I’m meant to be in a supportive environment. I’d suggest PDAers looking into getting this kind of support: refuse “rehab wards” for mental health if you are offered one, and be very very selective about which supported housing you accept, even if it means waiting for longer on an ATU.

  • PDAer frustrations

    Note: In the following post, I am speaking only for myself, and to my own experiences. AuDHDers may have their own experiences of AuDHD, ADHDers may again have experiences that differ from what I describe below. This is valid.

    As an adult PDAer in mental health and trauma recovery, attempting to learn the life skills that allow for functioning:

    Sometimes I really really wish I “just” had ADHD. Or even AuDHD. But not this PDA stuff.

    Not because I think ADHD/AuDHD is challenge free, or easy, or whatever.

    But because the strategies/approaches/tools/whatever you want to call them, to address the challenges that things like poor executive function, or time blindness, or even Autistic inertia cause are:

    • a lot easier to find out in the world, pre-created for you
    • a lot easier to think of for myself
    • would be a lot easier to apply without PDA, because there’s a way in which the expectation to apply the tools is a demand even as whilst it’s a desired thing
    • generally seem more reliably effective than PDA tools.

    For example, breaking down tidying into “5 things: rubbish, dishes, laundry, things with a home and things without a home” always answers the struggle of looking at a messy room and knowing what to do with it. It won’t solve any other issue (task initiation, demands, inertia etc), but that tool is a complete solve to that specific ADHD problem for me.

    Or, visual timers solve issues with estimating how long something will take, knowing how I have left to do something or how long I have to do a task for.

    Whereas managing demands, and demand capacity, is an ebb and a flow of things that works sometimes. And fail spectacularly at other times.

    If my emotion cup is empty enough. If my bodily needs are met well enough. If I’ve been able to avoid something for long enough that the sense of pressure and expectation has decreased – because I *haven’t* had to do it, I’ve been not doing it! If I have enough tools to change up how I approach tasks, to provide novelty often enough. If my mental heath is stable enough. If I am experiencing enough autonomy. Etc etc.

    I might have the demand capacity to do the thing.

    There’s no one tool for ‘having demand capacity’. It’s a whole life approach, to have that capacity just enough of the time. PDA can be very disabling, because life is inherently demanding of adults. (In children, life lacks autonomy, and this is often a bigger problem).

    And on top of that, ADHD and AuDHD are a lot easier for outside people to understand than PDA. They’re an awful lot more logical than demand anxiety is. (Or the pathological need to avoid demands, because PDAers do not agree on what underlies the avoidance – for me it seems to be demand anxiety.) That makes it hard for other people to know how to help, or worse still, feel interested in learning what helps. And worse than that, attempting to help without understanding PDA, in my experience, involves being demanding!

    So being a PDAer is… frustrating, at times, and more so than the other aspects of my neurodevelopmental differences. (It’s not more frustrating than my bipolar, which I count as one of my neurodivergences. That one is just a problem, and one I would absolutely choose not to experience.)

  • High demand capacity

    I’m having a rare day of low demand anxiety/high demand capacity. Seems slightly odd after the demand that I fix the ways I didn’t meet standards in a room inspection within three days – it has to be said yesterday that made me extremely anxious and tanked my mood.

    I guess a good 17 hour sleep was exactly what I needed in that state, after being awake for 28 hours (fairly common for me). It seems to have restored things, and I can make sense of why the things need to be done, so that helps with the demand anxiety. It also helped that when I wrote out the tasks involved, it was less than I had estimated. Also, a local autism charity offered support to get the more difficult tasks done, after I called them for support in the anxious, dysphoric state.

    What’s been really awesome though, is that I’ve had capacity for hobbies. So far today I’ve knitted a little, played a solo TTRPG called Ironsworn, and played a board game with a friend and staff at the supported housing. After writing this post, I’m going to pick back up a book I haven’t touched in over a month.

    Days like this are rare, and very treasured when they occur.