PDA fae

Category: autism

  • 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.

  • 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.

  • Fawning as necessary, and moral

    It’s very hard not to feel that avoidance makes me a bad person, naughty, non-compliant, defiant, bad.

    People in authority, with jobs to do, people who might get in trouble for allowing the avoidance put so much emotional pressure on. Everyone has something they’re willing to be coercive over, in my experience.

    It feels, very strongly, that the only means of being safe in this world is to fawn. To comply, and dissociate from the demand anxiety this causes, even if this is at psychological cost to myself. It feels, therefore, that a PDA existence can not be a trauma free existence – because the process of doing this is traumatic in itself.

    It’s awful. I hate this.

  • 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.

  • Rebuttal to article in The Times, 1.3.24

    I’m really upset by the article in The Times today headlined “self diagnosis of ADHD and autism ‘risks overwhelming health system’”. It claims that self-identification of these neurodivergences “risks… harming those who need the most help”.

    I fully disagree with this. Everyone with these neurodivergences is deserving of help and understanding themselves. Diagnosis is a privilege that not everyone has access to, and self-identification of an identity is valid – we should not be prevented from understanding our differences from the neuromajority. I also fail to see how, and the article does not articulate why self-diagnosis would lead to harms for those who are “less articulate or non-verbal”. Yes, people in these groups deserve support and diagnosis but this does not detract from the issues faced by those with supposedly less ‘severe’ traits – noting that, there is no severity levels of autism, we’re all equally Autistic. We just have varying needs of support.

    I feel that by people being more aware and able to understand themselves, we can leverage pressure to change society to work better for us. We can work as a group to create services that meet our needs, and advocate for ourselves as a minority group. It’s unfortunate that there persist to be those who argue that these neurodivergences need to be seen as medical conditions based around deficit. We have a fight on our hands to get Autistic and neurodivergent culture recognised as legitimate and valid, but I have faith that with time we will reach this goal.

  • 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.

  • “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.