PDA fae

Category: neurodivergence

  • Article in Asylum Magazine

    I’m lucky enough that I’m shortly to be published in Asylum Magazine, a radical mental health publication. I’ve admired the magazine for years, as I align with their values surrounding psychiatric survivorship and amplifying mad people’s voices.

    The article focuses on the ability of identifying a PDA profile to be highly empowering and neuroaffirming. In it I challenge the perception that PDA is a pathologising unnecessary term that shouldn’t be used to describe Autistic experiences. I explain the benefits that diagnosis has had for me, and how it avoids being labelled with more problematic diagnoses such as borderline personality disorder.

    To find the article, if this interests you, find asylum magazine here.

  • 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.

  • Food..

    .. is hard. Demands, sensory aspects, executive function, these combine to make food a complete nightmare for me.

    So it definitely doesn’t help when I start losing my appetite again. Might be to do with reducing my risperidone. Might also be to do with staff nagging me too much about how I’m going to lose weight – I do not need extra demands around food or exercise because then neither will happen.

    For now I’m aiming for low spoons nutrition. Smoothies, cereal, microwaved baked beans, protein from the freezer, lots of potato, meals that just need putting in the microwave or oven (and nothing else), and multi-vit water. The highest spoons food I have is apples, which I need to cut up to eat because biting into them makes my gums unhappy.

    Hopefully I can settle into a good rhythm, eating like this, that can sustain me. Smoothies are definitely a low demand, low effort way to get a little more fruit and veg than I was previously.. and the more fruit, veg, carbs and protein I eat, the less processed food I should need to snack on to feel full.

  • Going back to university

    Yesterday I applied for my student finance and disabled students allowance, so it’s real now. I’m definitely planning on returning to university level study – though it might depend on the outcome of my student loan application given I’ve previously studied and received an overpayment. Hoping that works out in my favour!

    It’s exciting, but also very nervewracking.

    What if it wasn’t the fault of mental health, trauma, undiagnosed neurotypes… but just me not being good enough?

    Am I certain, if it was those things, that they won’t cause exactly the same problems again?

    Am I 100% sure I’m thrilled about the world of deadlines, assessments, assignments, citations, references, essays?

    I’m excited to learn new things, I’m excited to have a second chance to achieve a degree. I’m excited for distance learning at a more supportive university. I’m excited for the sense of purpose.

    I’m really hoping that having a better understanding of myself will provide me with better ways to address the challenges I will face. I know I’m going to have to frame studying as something I want to do, not something I have to do – as a goal on the path to living within my PDA flow. I’m also aware now that my brain thrives on novelty, not routine, so finding ways to mix up my studying should help. Equally, I could try role playing an academic, because that might help lessen the felt demands of studying.

    I’m going to be able to get accommodations for a more complete amount of my disabilities now. I especially predict that helping with ADHD, as PDA isn’t as well known or a recognised diagnosis in itself. My hope is that because my diagnostic report specifies PDA that those supporting me will have an awareness and a willingness to be flexible in their approach.

    The only aspects that aren’t covered is my complex trauma history, which can in itself be disabled when I am triggered, and re-experiencing, and potential dyscalculia. I think eventually I will have to seek a private diagnosis for both, likely starting with the dyscalculia as this will affect science modules (especially as I’m going to have to take a biology and chemistry module! Not looking forward to that – but credit requirements and prerequisities makes it necessary).

  • 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.)

  • Neurodiversity Acceptance Month 2

    Something from this weeks themes that stood out to me was “Explain how mental illness is neurodivergence and why that’s important to acknowledge.”

    Neurodivergence is a purposefully non-pathologising, non-medical model term for any brain that differs from the typical. This can be neurodevelopmentally (Autism, ADHD, dyslexia, dyscalculia etc), it can be acquired (traumatic brain injury), and it can be through mental illness. It isn’t about why we’re different, or how we came to be, what matters is that for some reason our brain diverges.

    From the creator of the term: https://twitter.com/UVGKassi/status/1306062363305615360

    A lot of the time I see the time used it’s in a neurodiversity-lite way, where the terms have been repurposed for the medical model, and then it’s limited to the neurodevelopmental. Unfortunately this seems to becoming the widely understood version.This sucks the power from the word, which should stand in opposition to models based around disorder and deficit.

  • 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.

  • A Kind Of Spark

    This is a couple of days late, but I was lucky enough to catch the BBC interview of the author of A Kind of Spark, and the three lead actors from the series.

    If you haven’t heard of this yet, it’s an Autistic series. The author, Ellie McNicoll is #ActuallyAutistic, as were the three actors playing the lead characters. It was really quite something to see four women sitting on BBC Breakfast discussing masking, and the difficulties of getting diagnosed as women on the spectrum.

    I’m really looking forward to watching this series, which will be on CBBC and Iplayer for those in the UK.

  • 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.