PDA fae

Author: plumfae

  • “what would I freely choose to do now?”

    I experienced a lot of demand anxiety today. I had been very disconnected from my demand anxiety after the stress of nearly entering supporting accommodation, and the results of that – which were very serious and quite triggering, so I will not be detailing that here.

    I was sat in the library, around other people, which in itself helped me enter ‘doing things mode’. Watching others apply themselves seems to help switch me into that mode, much like wearing shoes and proper day clothes is known to help some PDAers. Initially I journalled after thinking ‘I have the freedom to write whatever I choose’ – a similar approach to that taken by Dr Gloria Dura Vila in my assessment.

    I then thought of the question in the title, and started brainstorming anything I’d choose to do if it were possible. My first answer was ‘run away to the arctic’ which wasn’t acheiveable, but did make me feel better. As I wrote more, I generated thoughts that I could act on, such as create a research plan, and write a short story.

    I think this will be really good for times when I’m very bored, but my brain is saying ‘No!’ to everything, or days like today, where I really want to be doing, but everything feels very anxiety inducing. Something about starting with the impossible, and then teasing out the possible really helps, and focusing on free choice is key.

  • Ambitions, are they possible?

    The town I’m currently in had a volunteering festival today. For me to be accepted onto the courses I’m thinking about for post-graduate study, I really need to be doing this sort of thing.

    That said, is it even going to be possible for me to undertake post graduate study?

    I am going to be able to maintain volunteering commitments?

    Will I remain well enough? Will it be too much for a demand? Will it become too difficult to reach locations, given that I can’t drive? Do I remotely have the capacity to do any of this?

    And how do I have a meaningful life if I can’t? How do I avoid sinking into depression and feeling like a failure?

    Sigh. I really hate being disabled sometimes.

  • Reverse psychology = demand

    I’m experiencing a lot of demand anxiety today. Just looking at my uni textbook is actually making me feel a little bit anxiety nauseous, which is super unusual for me.

    My friend tried telling me ‘well then don’t you dare’ and like, no. That doesn’t work. You clearly want me to dare. I shall obey the letter, not the spirit.

    What can work, if genuine, is being told ‘you won’t be able to’. That generates a ‘The hell I won’t!’ response. However, this only works if genuine, again, if it’s a technique, I see right through it.

  • The demand of wanting to

    As mentioned on pdafae on instagram, I really want to read my Baye’s Theorem book. During the course of my psychosis, I started developing a special interest in perception. I think through the muddling nature of illness, I was reflecting on my past studies and realising that perception was the area I find most fascinating in psychology.

    It’s lasted since I’ve regained touch with reality. A patient was kind enough to purchase me my uni’s perception textbook to cheer me up, and I’ve read most of – that too has become slightly a demand to finish. Baye’s theorem is very relevant to perception, particularly autism and perception as I’ve mentioned before.

    It would do me good to engage in a special interest, but because it is a special interest that I’m really interested by, my PDA is responding to that with a lot of avoidance. I suppose there’s a big sense of “should” and “want”, and I need to find a way to relieve that.

    Something that might work is to just allow myself to ignore it for long enough, because that tends to remind me that I don’t have to engage with something.

    Alternatively, I could try just reading small amounts? I think I need to find a way to be in my flow. I’m really eager to study the signals and perception module at the OU, and that might be because it’s possible it’ll be difficult for me to do so – whereas the books are readily available. Possibly therefore, putting them accessible but out of sight might also help, because it may be that seeing them regularly is increasing the demands.

  • Accommodations I use to cope on wards

    Mental health wards are a difficult environment for Autistic people. Autism is not regarded as being part of mental health, so staff, including the psychiatrists even are not specialists in providing care for this. They have some degree of training, especially now there is the Oliver Mcgowan training required by law.

    So to cope on this ward, I’ve instated a lot of my own accommodations:

    • I have my ear defenders, and my loops to cope with noise levels
    • I have orange glasses, to cope with the bright lighting levels
    • I have a large array of stim toys to help me regulate my nervous system
    • I allow myself to hand flap and fidget
    • I have clothing that refers to neurodivergence, to help me self-advocate and show pride in my neurodivergent identity
    • I have a plastic bracelet, which is green on one side and says “talk to me” but can be flipped to a red side that says “not ok” and “leave me be”
    • I engage in conversation and activities to keep myself from experiencing painful boredom that will make me depressed
    • I try to achieve demand free time, when I can
    • I engage in playing board games with staff, to occupy my mind
    • I engage in special interests, even if that’s just reading autism blogs on instagram
    • I read magazines when my concentration is poor when I am recovering from mania, again to help reduce boredom
    • I take melatonin to help correct my sleep pattern
    • I created a laminated flip chart with the support of staff (i.e. I am not allowed to use their laminator myself!) to help quickly explain PDA to staff members

    These accommodations make my stay just a little more bearable for me. They aren’t a complete fix, but coping here would be so much more difficult without the awareness that I am Autistic, and that these things can benefit me.

  • Everything sucks a little right now.

    I’ve been experiencing a lot of very low mood recently. A lot of anhedonia – loss of pleasure in activities, and a lot of feeling like a failure of a person. A failure for not graduating from university, for never having lasted in a job, for not being able to drive, for not being in a long term relationship with a family and my own home. For not being a settled 30 something.

    We’re trialling me on lamotrigine. It’s been known to cause me severe constipation the previous two times I’ve tried it, and it can cause a lethal skin rash, so this may not go well. I have to really hope it does though, because it’s basically the only safe mood lifting drug I can try, i.e. it won’t cause me to experience mania. Don’t worry, it’s possible to intervene if a rash does start to develop.

    It makes me really nervous. We all respond differently to medications and lamotrigine may just not work for me at all. If it doesn’t, I’m really out of options and just have to tolerate the life destroying effects of the near constant low mood I experience (I believe one psychiatrist felt I had dysthymia alongside bipolar). I don’t know how I’d cope with that, and it’s going to be a long slow journey to find out, because due to the rash, lamotrigine has to be increased very slowly.

  • Perception (and PDA?)

    I studied psychology at Cardiff University, and as part of that we covered perception. I achieved only a DipHE, due to my mental health, so I am not yet a psychologist. I am currrently studying the Open Degree at the Open University, in which I am hoping to re-study perception, and then go on to read a psychology conversion course, ideally at Cardiff.

    Looking back at my studies at Cardiff University, perception was my favourite area of psychology, followed by brain imaging. Concepts like conditioning are central to understand well, but I do not find them engaging – they are very dry to me, and rather dull.

    When it comes to the study of the sensory system however, it’s very difficult, but really intriguing. It’s so interesting to me how we make sense of the world around us, and the information coming into our brain from that world. Through our vision, taste, touch etc. Psychophysics is the study of these systems and the brain regions that process them.

    I’m intrigued as to how these differ in PDAers. The sensory system can be used to explain some of the differences in Autistic individuals – unfortunately usually in terms of deficits. I don’t believe any research like this has been done on our population, and I do wonder if there may be clues as to why we experience demand anxiety within these systems.

    In Autistics, a major difference is that we use “priors” differently. A prior is a concept from Bayesian probability, something humans are very bad at when undertaking it consciously, but may well use very easily intuitively within our sensory processing for example. We usually make use of prior likelihoods about the world to process what we are likely receiving input from – but Autistics weight this much less heavily, making less use of these – I will add a citation to this shortly, after accessing my iPad.

    This is used to explain some of the differences experienced in Autism. I shall need to re-read the paper before summarising that here, but I will attempt to do that shortly (if PDA allows!).

    I also wish to create infographics about perception – particularly the Bayesian Perception that differs – on my instagram.

  • 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.

  • Magickal evening

    This is officially the best ward I’ve ever been on.

    I got granted, along with another more well patient, the chance to go outside late at night – much later than we are usually allowed outside – to view the northern lights.

    Unfortunately, afaik, my phone was unable to pick up on the lights due to it’s make – but I saw the faint, very subtle red and grey swirls, stripes, flickers, and whorls. That’s a lot more meaningful to me – google and TV are full of the vibrant images that cameras pick up.

    I’ve wanted to see the Aurora Borealis since I was a little kid. As I’ve mentioned before on my blog, His Dark Materials pulled me through a lot of trauma as an 8 year old. I really related to Lyra – who displays strong PDA characteristics to my mind! – and the help she was provided by caring adults when that was lacking for me really helped me cope.

    So seeing them today, in the south of England, really made me very emotional. I’d thought I’d have to go on an expensive holiday and might never get to see them, and tonight changed all that!

    The moon was glowing down as a crescent, perhaps there was some magick afoot.

    Photo by Tobias Bjørkli on Pexels.com

  • Externalising PDA

    I had thought for a long time after learning of my PDA neurotype that I was definitely an internalising PDAer, or at most a mixed PDAer who mostly internalised.

    I was wrong. That’s my response to trauma. I learnt to fawn, i.e. comply, to retain control of situation through maintaining safety. That was the only acceptable response as a child and teenager, no matter how much that went against my true nature. It caused an awful lot of dissociation, especially as I got older, and disconnection from my body and emotions. I dissociate less now that I have acknowledged my experience of demand anxiety, but I still struggle to name sensations in my body, which makes the process of therapy rather difficult, as brain spotting relies on doing this to work. I am slowly learning to be able to pay attention to my bodily experience, but probably still spend the majority of the time disconnected. I live in my head, rationalising everything to cope.

    I’ve realised during this hospital stay that my unmasked, authentic self is very externalising. It makes me wish I had been in the early cohort of identified PDAers, that perhaps that would have lead to some understanding – but perhaps that early the successful approaches for PDA children had not been developed?

    I can see now how my externalising lead to the responses that I got from adults. There’s no excuse for how I was treated, all children deserve safety, but I can see how things unfolded. My mum says I was always quick to escalate to meltdown, and adults were determined to take any action possible to prevent that, with very unfortunate consequences. At a young age, I was likely very vocal about my autonomous wishes, and had adults who strongly believed that adults were to be obeyed, not challenged, which was not the ideal environment for me.

    I want to find a way to be my externalising self, authentically, without escalation to meltdowns. I definitely need a low demand lifestyle, so I am very glad not to be heading to supported accommodation, because I have come to the opinion that “low demand” is not possible in that setting (especially not mental health related supported housing, which does not understand anything about autism, let alone PDA). I have a lot more faith that in my own place I can create my own rhythms for “activities of daily living”. I would be willing to have the support of a personal assistant, to ensure that flat maintenance does not suffer – hopefully this will be possible.