PDA fae

Category: autism

  • OT needs assessment… and no sleep

    It’s not even 4am right now, but tonight I don’t seem to be able to get sleepy. I think it’s because I am starting my occupational therapy needs assessment later today, with a trip to a supermarket, and a cooking exercise.

    I’m nervous.

    I’m nervous because… I feel like I’m handing information to an unknown someone else to make decisions for me, without my input based on how I perform. I’m nervous about getting what I need, but also what I *want* from the decisions they make – more nervous about this actually. I want to be able to say ‘I want XYZ’ and have them find the funding. My OT explained that a lot of people would overestimate their need, and then be handed far too much if it worked like that, which I can understand. Even so, it’s still stressful to wait on someone else’s decision.

    Last time I was in this position I had much more faith in supported housing as an option. The let down of my supported housing, their refusal to work with my PDA profile adequately, however has left me very wary. I’d want autism specific supported housing this time, and I am not sure that exists within my local area. I could be moved to a different area within my county, but then I lose my care co-ordinator, end up under a different CMHT… far too much change and uncertainty. I know my current care co-ordinator is happy to provide my depot by thigh injections for example, which is the only delivery method available that I’m comfortable with. I also don’t want to face the risk of the decision that I don’t need a care co-ordinator because I “seem well” and have supported housing, after a move to a new area – it happened last time, I transferred from one region to another, and the new CMHT deemed me as not needing a community psychiatric nurse to act as a care co-ordinator.

    What I’d ideally like is my own place, under my own autonomous control, with support visiting me. I’d love to train myself a psychiatric service dog, to alert to manic episodes, ground me through delusions, racing thoughts alert to irritability, and rising demand anxiety. Something that might be particularly useful would be grounding through rising states of emotion and panic in response to demand anxiety.

    I am very anxious that the decision makers will deny me access to this, based on a version of me on paper. Or that housing where a dog in training won’t be possible to find. I’m also against the idea of supported housing, as it would very likely not be possible to have a dog/puppy live there whilst training.

    I really hate these situations of waiting in wards for an answer to a housing crisis. There’s pros this time, I’m on a much nicer ward, I have the distraction of starting my university studies, better support from the ward manager/care co-ordinator/psychiatrist/discharge co-ordinator/occupational therapist/nurses to move things forward quicker. I just am not so keen on how things feel so open ended and uncertain in terms of what type of accommodation and support might be decided on as meeting my needs.

  • “Just prepping”

    I made a small instagram post about this – the hack of telling myself that I’m not “Doing The Thing”, I’m just “preparing”. It’s something I’ve used a lot throughout life, usually to get myself to study. It started in high school, I would set up my pens, my books, my computer at the kitchen table, often taking quite a lot of time over an exact layout. I’d tend to feel unable to start until things were laid out “just so”, but also that that was all I was going to do – just lay things out.

    Somehow, starting by “getting things set up” reduces the demand anxiety to get the rest of the task done. I think I’ve used this with tidying as well, with setting up llama life, or a pomodoro stream. I wonder if it could be used to effect with cooking, laying out the ingredients and the materials needed, like the dish, frying pan, or chopping board and knife. I imagine that might actually work pretty well.

    It’s strange to me how this is a little hack I came up with years before even having heard of PDA. I guess I have been living my life having to find some ways around the feeling of demand anxiety – a lot of that involved dissociation, which I think I’ve mentioned before I do a lot less now I have acknowledged my demand anxiety.

    It’s good to live a life working with my brain, not against it.

  • 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.

  • 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.

  • Demand free time

    Recently I’ve needed a lot of this. I’ve been dealing with a series of traumaversaries throughout July and August, which has been Very Not Fun, and they obliterated my demand capacity.

    I re-downloaded tiktok, with better knowledge of how to curate a better feed for myself than when I first started with the app back in 2022. It’s now a lot of Autism/ADHD/Trauma recovery content with the occasional pet content (usually cats), and sometimes cleaning/cooking videos. It now feels replenishing to spend a number of hours browsing those videos.

    I find tiktok an ideal way to have demand free time that isn’t ‘understimulating’. Sometimes demand free time does need to be time spent just sitting, maybe with music on, and that can be replenishing in a shorter amount of time. But my ADHD finds that very difficult.. or sometimes there is just a very large amount of demand free time required. In those moments, social media becomes the perfect activity. I can engage in multiple special interests, without being required to expend very much effort at all.

    Of all the things that learning about PDA taught me, demand free time was the most useful, life changing concept I learnt of. I can finally recuperate from life properly, and much much faster. It helps me stave off (and when needed start to recover from) burnout. I now know it is a vital need to empty my demand cup.

  • Having a future, once more

    When I was manic, I declared I’d become a human rights lawyer. This was grandiose, I wouldn’t get through law school. I do have an interest in human rights, and so I’ve been researching alternative careers in the field that don’t require law school.

    It feels so good to have options around my career. In my 20s I was heart set on clinical psychologist (because I wanted to offer people better services than my friends were offered). I dropped out of undergrad, and since then, learnt that you can’t overthrow a system by being the system. So I moved on from that goal. It felt like a loss initially, but it really wasn’t.

    Now I’m looking at working in local autism policy, or autism research, human rights work, or setting up a peer support company.

    times are exciting again, finally .. after 6 years of stagnation after my first manic episode and not being offered any help to regain my functioning,

    I now have supported housing (which is limited, for reasons) and living here and recovering from mania has shifted my mindset into thinking about the future again. This is why I call this period of time a metanoia.

    It’s bloody amazing.

    What helps in all this, is learning about the idea of the PDA flow. This sort of stuff is exactly my PDA flow.. and I’ve been so much more motivated to be functional in life because I know where my flow lies again. Existing disconnected from the flow seems to be a surefire way to be depressed for me. Even when I was manic, I was finding my flow again, and that was a very good thing.

  • My second chance.

    Metanoia pays off, it seems.

    That’s a word I’ve used here before: the idea of profound lasting positive change after a breakdown, esp. psychotic breakdown.

    I’ve just been approved for a student loan to return to university! I had worried due to previous study and overpayments I wouldn’t be, so things had been uncertain and stressful. It’s so good to have the certainty about what I will be doing come October 7th.

    It will be the Open Degree at the Open University, which in short refers to multidisciplinary study – lots of all the sciences for me, social and life/physical. Lots of modules on mental health, autism and ADHD, biology, sociology. It’s so exactly my area of interest – this is what I did my A levels in, bio, sociology and psych and I loved those.

    2021’s psychotic breakdown really did lead to massive change for me. I got the actual care I needed from it, and rescued from stagnation where I didn’t feel competent to try anything. I also didn’t know what my goal, or aim was. It had been clinical psychology, and I lost that. Lost interest in it as well.

    I didn’t have anything to replace it though, till I added the world of neurodevelopmental difference to my knowledge of neurodivergence (including mental ill health in that). Until I reframed everything as ‘neurodiversity’ and ‘examples of neurodivergence’ – that was a real paradigm shift. I also learnt how vital lived experience is and the power it holds, from working with my lived experience practictioner. But also from the wealth of lived experience shared on social media.

    That gave me a drive to pursue after I started recovering. A HCA on the first ward that year said logically SFE should provide funding, otherwise they make no return on their investment in me. That provided the spark to reconsider university study, the hope it might be possible.

    Sometimes living alone is lonely, but it provides me with the space I need to study without others around me. I have good meds, I have new diagnoses, I can get new accommodations. I understand myself better and what works for me. I have trauma therapy finally. The OU puts out so much needed and helpful guidance on how to study, and the level one modules are a gentle start. I get to study slowly.

    Things should be much better this time, so I am very, very excited for my second chance.

  • 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.

  • Not the way to do it

    Once again, a crafting session at my supported housing involve staff being demanding. I wish they’d understand the more pressure they put me under, the more I’m going to NOT do the thing!

    They don’t seem to understand that PDA applies to any and all demands, and just because something is ‘fun’ doesn’t mean you can’t make it into a demand that will be avoided. In this instance, it turned out I’d made something slightly incorrectly, and I said I couldn’t be bothered to correct it, which lead to,”that’s not the attitude!” and “you should finish what you started!”, followed by a resident chiming in with “don’t be so lazy”.

    Not the way to get any PDAer to do, well, anything. If there’s a correct response it’d be closer to something like “that’s fair, only do what you feel like doing”. I really don’t get why they can’t take that approach, it’s not difficult, and it makes me feel like they think PDA is a load of rubbish that needs a firm hand to enforce taking part.

    I don’t appreciate it. I’m forever reminded that everyone has something they’ll feel absolutely fine forcing other people to do, or attempting to force. As a child, those moments weren’t safe, as an adult… you can’t physically make me, and as I did today, I’m likely to simply leave the situation rather than continue to be in your presence. It’s not something I have to tolerate anymore.

  • Neurodiversity Acceptance Month

    As shown here: https://www.facebook.com/photo/?fbid=674917597975147&set=pcb.675005351299705, the topic of week one is ‘Autism Advocacy’.

    I suppose by writing this blog, my aim is to contribute towards the wealth of autism advocacy available on social media. In particular, I wanted to add to the adult PDAer voice, as most of the PDA work online is by parents for parents. That’s an important perspective, but late diagnosed PDAers need resources too, and we deserve for our voices to be heard.

    Autism advocacy was so important for me learning about my own neurotypes. I was manically hyperfixating on all things neurodivergent for around 6 months before ending up in hospital, which I think contributed to experiencing burn out at the same time and losing my speech for around a month and a half.

    Something I found difficult was that April was early on in my journey, and that month reminded me all the ways my Autistic traits have lead to oppression and trauma. Even just the counter-responses by Autistic advocates in that month was unpleasant. So I’m trying to work to make April a more pleasant experience now, and engage in these blogging events to share a rounded Autistic experience, without directly engaging in the stuff that fights back against Autism Speaks etc.

    Outside of that aspect of Autism advocacy though, I’m so glad for the #actuallyautistic communties on the web, and the people discussing ADHD. I’d never have understood the nature of these neurotypes well enough to realise it was my experience without it. It also helped me feel like there were people out there that understood me, all of me for the first time (particularly meeting fellow PDAers).

    I think it’s actually a really impressive lived experience body of knowledge that is being created, and it deserves to be valued as much as research studies – that are often dehumanising, and from the Allistic perspective, rather than our own. It’s important that we listen to Autistic people about our own lives, what works for us, and what we find traumatising. Autistic adults are best placed to say what will help Autistic children, having lived through that experience.