PDA fae

Tag: autism

  • Update

    Recently I’ve noticed myself fawning more again. It feels like the only way that people will accept me, that overt demand avoidance is met only with rejection, judgement, and attempts at gaining compliance.

    I don’t like the experience of fawning. It’s a situation of taking my demand anxiety and shoving it deep inside to where I can no longer feel it , and going against my own nature to meet another person’s desires. It leaves me doubting whether I am actually PDA, if I am able to be so compliant.

    But then, I still need carers to help me manage day to day activities. I avoid getting out of bed, or going to bed. I still only shower every other day, because daily is a demand too far.

    Sometimes my PDA is less obvious for a stretch at a time – PDA is a fluctuating disability where capacity varies. No doubt times will change, and I’ll notice my demand anxiety more at some point in the near future.

  • PDAfae discord

    I’m working on creating a PDAfae discord for those who would like a place to socialise with fellow PDAers/parents of PDAers.

    Overtime I will need some moderators to support this effort, please feel free to email me at PDAfaeATgmail.com (replace the AT with an @) to discuss this.

    I will also be sharing this on facebook, and in facebook groups, and instagram.

  • Equalising and wards

    Equalising is a commonly discussed term when it comes to PDA kiddos. I’m not sure though, that adults are entirely “above” doing so, when under enough stress.

    As in, for me, being on wards induces exactly this. There’s a known “us and them” effect on wards, especially NHS wards. Staff are the Us, patients are the Them. We, who are Well, Those who are Unwell.

    As a PDAer, I am effectively allergic to this entire environment. It’s so stressful. I can barely cope with hierarchy at the best of times, and definitely not completely arbitrary “we’re the Staff, you are the patients” attitudes. (This forms part of my personal thinking about PDA is that we seem to come in three stripes: eglatarian, communicator or negotiator, based on which of the criteria we have most strongly. This isn’t based on anything overly scientific, just a feeling I get from observing, interacting with, and being a PDAer. I might post more on this in the future – depending on what happens with demand avoidance!) I definitely really relate to descriptions around intolerance of authority and hierarchy – as a constant trait, compared to my demand avoidance which can actually fluctuate quite dramatically.

    As a result, these environments cause me to equalise. This can take a more benign form of addressing everyone in the place as a human who might be friendly, it can take the form of giving a staff member a screaming dressing down. It’s not fun, it does get me in trouble. It’s why I really need to make a big push now to stay out of psych wards, because well, they SUCK. They’re not a fit environment for any PDAer, no matter what mental health problems we have going on – far too overly restrictive. When you mix that with a poor mental state, everything goes haywire.

    This is a big reason I would say, if you know you do have severe mental health problems and suspect PDA: it is very worth saving for that specific modifier in your diagnosis. Unfortunately, the NHS is only willing to include a PDA modifier in children (in some trusts). My Dr Gloria Dura Vila diagnosis has changed my life as a person living with bipolar type 1. It means the wards know they need to add support in, and that I can justify that that support needs to work very differently than they might expect. It backs up my self-advocacy efforts, and that’s invaluable – otherwise who could understand an equalising adult?

    Equalising is not “good behaviour”, and I find the best thing I can do as an adult is seek out the environments that don’t provoke it. Living in my own place, in the community, with greater control over the environments I find myself in is a big part of this. For me that’s going to mean, complying with my clopixol injections and doing my best to thrive now. It’s been a rough few years, but here’s hoping I can head onwards and upwards now!

  • Other people’s enthusiasm

    I’ve been reading back through this blog, and it struck me – possibly my biggest trigger for demand anxiety is when other people are Super Enthusiastic!

    E.g. Oh I really wanna play this game! Let’s play several rounds!

    Oh you’re doing really well at this, let’s keep going!

    OMG I really love puzzles, and you’re a good help, let’s puzzle right now!

    Sigh. Every damn time, it’s fatiguing. I’ll often join in initially, and find I get a building, creeping sense of demand anxiety and need to stop way before the other person wants to. It’s very frustrating.

    I’m not actually sure what the answer to this is. I don’t like feeling like a “killjoy”, it’s lovely when others are enthusiastic. I just… it’s also hard, and anxiety provoking.

  • What if..

    I’m not actually autistic?

    What if PDA is it’s own neurotype?

    What if it’s an epigenetic related neurotype – i.e. rooted in neurodivergent trauma, but inheritable mainly through the mother line?

    What if being a super social PDAer actually makes you allistic, but also highly neurodivergent?

    What if PDA can be researched enough to prove this? What if I’m not able to, when I know so much about my own hypotheses, methods I’d use..

    What if there’s a point I have to give up, and hand over my passion to another researcher because I’m not able?

    What if, though, it does all work out? What if I can work this hard? What if I can become a truly high flying PDAer – with all my disabled complexity?

    What if, what if, what if?

    One’s thing for sure, I agree with that Newcastle Uni research that the PDA brain has an “intolerance for uncertainty”!

  • Advice for the teens

    Hi, you teeny terror tots

    • learn to accept deadlines as a way to channel your passions
      • whether that’s uni, starting a business, cleanliness, whatever: deadlines are a part of life. Don’t take them too seriously, because the only ultimate one is actual death, but still
    • learn to tidy AND learn to clean
      • Anyway you can, anyway how
      • These are the skills that truly prevent self-neglect
    • I bet you’re a better cook than I am!
      • If not, start out with baking
    • Embrace your own personal form of brilliance
    • Learn to use some form of AAC
      • A big part of PDA is the language aspect, and AAC helps all humans communicate
      • even if it’s just a ‘I’m ok, I’m NOT ok’ wristband – you’ll help all your interpersonal relationships
    • Learn to be ok with your own company, and learn when you’re getting too intense about one specific person
      • No one loves being the focus of a special interest/a favourite person – not even your partner
    • Forge your own paths, please: we’ve all got ways to shine.
    • Also; let’s teach this world the beauty of stimming, eh?

  • Finally home for good!

    NOTE: THIS POST IS AFFECTED BY THE REMANTS OF A SEVERE MOOD DISORDER, AND AS SUCH THE CONTENT VARIES FROM MY USUAL POSTING

    Oh gosh I felt so trapped on that ward. I literally had to run away from my discharge meeting because of that feeling – I needed to move, move move move move.

    Thankfully I know that coffee helps my brain, but that ideally it should not have milk in it (obviously!).

    Now I have my sensible meds, a sensible care co (lovely woman, B), sensible times to take them, a sensible psychiatrist in the community – and a sensible way to get diagnoses I need.

    I’ve had to defer a module at the OU which genuinely makes me very upset – but no worries, I can restart and do better than I was. It was a “bridge” module between level one and level two, which only makes me all the more determined – I will graduate this time, and probably in double time. I’ve studied full time before, I can do so again haha. For now I just need to finish the module I started and focus on the *maths content* – because everything else from that module is revise-able.

    Genuine study advice for anyone struggling: build in time to review. That’s what gets things into long term memory. My maximum working memory is literally SIX, and that’s where I get stuck – I have trouble holding things in my working memory to get to short term, to long term. My verbal working memory is better than my numerical as well, which might literally be stuck at 3 (working memory is 5 +/- 2, after all).

    As it goes, I’ll keep typing about specifically my life – here, substack, instagram, facebook. That’s all I can offer, my experience, my ways to cope: PDA style.

  • Second day of leave

    NOTE: THE CONTENT OF THIS POST IS ALTERED BY A BIPOLAR MOOD EPISODE, AND DIFFERS FROM MY USUAL POSTING STYLE

    Wow, life with bipolar and PDA is hard.

    Life with bipolar, PDA, chronic pain, scoliosis, chiari malformation, probable EDS?

    Yes. Very much a disabled adult here. At the time I was under the RNOH, EDS was considered “zebra” – looking for zebras, when you hear hoofbeats and not thinking “horse”.

    I dislocate far, far too easily. I have congenital scoliosis. I had a brilliant surgery on my spine at 20 years old, and as a result am around 1-3″ taller than I would have ever been (genuinely not sure, people guess my tallest to be around 5’2″, I was 4’11”?) Standing tall as I can, I’m now about 2cm taller than I was – 150cm.

    Dyscalculia, I’d guess that makes my full height 5’1″? Yeah who cares lol. Doesn’t matter – I’m teeeeeny. Suffice to say, I’m 34, and full of disability.

    My honest advice, on this time to talk day, is: ALWAYS keep an eye on mood disorder symptoms in your kids. Do not assume ‘oh this is rejection sensitive dysphoria’, ‘oh this is PDA’ ‘oh this is ADHD’ ‘oh this is teenager time’. All kids are at risk of depression at the very least, all kids are vulnerable to abuse – of any kind, from anyone – and honestly, psych wards are a last resort type of place, for people at risk of SELF-neglect.

    You don’t want your 19 year old in such a place, trust me, let alone your vulnerable 24 year old.

    You definitely don’t want your teenager in a CAMHS unit.

  • Avoiding an ATU as a PDAer

    Ways NHS 111 have supported me:

    The moment I tell them ‘bear with me I’m autistic’ they do know how to alter their communication. If you’re lucky enough to have a diagnosis with a PDA modifier, they actually do have a degree of understanding of what that means.

    They will likely still be quite demanding to call – but if you are facing a dangerous crisis and don’t fancy heading to hospital, try and meet them. They take the “least restrictive option” and as in my case, can treat you in your own home.

    It’s best to lean on friends and family, but if it’s the middle of the night and things have *worsened*, call 111 every time something gets worse. Short of that, SHOUT is textcare, and there are multiple email support lines: saneline, samaritans being just a couple. There’s loads of suicidal crisis lines, papyrus, CALM, samaritans – but these need you to be actively suicidal. You can also contact the PDA Society helpline if you need PDA specific advice – but they are not a crisis line and will respond at a delay. The NAS also have webpages on where to turn in crisis – I would link but the website is currently down.

    Yes! All of this is demanding!

    BUT: all of this is better than any length of time in a psychiatric unit as a PDAer. They are restrictive, demanding beyond belief and very controlling. If you need to be in one, they’ll help – but if you can do any of this and stay at home, you’ll keep your control and autonomy.

  • Friendship gets easier with practice

    Recently I made a post on my instagram about one of my biggest autistic traits is difficulty making, and keeping friends. I’d now state that as biggest PDA trait – but also I’m finding that contact with 111 option 2 is helping me shift my communication, boundaries and locus of control.

    That is to say, I am more aware of what I can control and what I can’t – which really helps with intolerance of uncertainty. It also reduces the anxiety driven need for control.

    I am also better able to stand up for myself but also take responsibility for my own actions, because 111 definitely expect that of you. Once you start doing that, they are very able to work with PDA and autism, actually. They will adapt their communication, and expectations as far as a non-autism specialist service can.

    The outcome of all this is that I am much more selective in who I keep in my life – which makes for friends who actually want to check in on me and see me in person (which as a socially motivated PDAer, I need! )