PDA fae

Tag: neurodivergence

  • 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?

  • Christmas eve 2024!

    I missed posting last year because I was unwell with mania right up until early January this year. When I look back at my 2022 post, I realise now that it still wasn’t the most normal of Christmas Eve’s because of the supported housing. I’ve since realised they were unsupportive and discriminatory towards my autism, likely because of the word “pathological”.

    So I’m actually counting this as my first normal Christmas Eve since 2019. My own flat – not a supported place -, large enough to truly decorate without clutter. The supported housing flat was a studio flat with a wall in the middle, meaning I was effectively living in the space of my now living room. That alone made me depressed.

    So, this year? Gut issues from lamotrigine, but I went for an early morning walk and got medicine for that. I also got to fuss a lovely boxer, and meet a hyper spaniel.

    I’ve got my Christmas lights on. For the first time ever, I decided to try a simmer pot – smelled amazing. I delivered a gift to neighbours who took care of me as I was having a post traumatic stress reaction (that built into mania).

    As ever this Christmas, I’ve got radio on, for company, Christmas music, and normal music mixed up together. It’s a nice background.

    I’ve also got NORAD santa tracker going. Childish, maybe, but I prefer to call it childlike. It’s a bit of fun that I’ve done for a few years now.

    It’s strange adapting to Christmas Eve alone, back in 2019 and 2020 I was with family for all of advent, now I only see them on a handful of days. I’m learning how to enjoy days solo, and see the magic in alone time.

  • Low demand language

    I’m right at my beginning of learning how to use low demand language. I made a mistake with Sally Cat, for which I apologise! Sorry Sally Cat! I have to remember: don’t tell PDAers how to view their situation, they won’t appreciate it!

    My therapist is recommending declarative language:

    • I notice
    • I wonder
    • I get to
    • I have time to
    • I get to take a break from X by doing Y

    These are just little baby steps to changing from the demanding language I grew up with, to the language that will benefit me – and benefit my relationships with fellow PDAers!

  • Life planning

    Now I have the meds I need, I can calmly think through life planning as a positive activity.

    To do this, I never use smart goals, they confuse me. Let alone the demands of the requirements they have!

    So instead, I just do very informal notes:

    Learn to drive

    • autonomy
    • need to concentrate
    • need to not dissociate

    I do this via different categories, e.g. bipolar and goals, ADHD and goals. Yours may vary, if you wish to give this a try.

    Following that, I review some time later – probably quite some time later, as in years. I cross off the things that no longer matter, tick off progress, throw away things that have been completely solved. It gives me such a sense of achievement!

  • Gamification

    I use this a lot to help me get tasks done. It involves turning activities of daily living into a game – scoring points, getting rewards (if that works for you), growing a character, going on quests.

    I find the best rewards for me are ones that aren’t part of the real world. For example, I use Finchcare, which is a little app with a finch, where the rewards allow you to dress up your finch, or decorate their little home. It’s not pushy – it does ask you to set a streak, but this feature is pretty ignorable. It doesn’t nag you to complete tasks, you can turn notifications off, it just celebrates what you do get done. I have tasks that are just there to be avoided, if I’m honest. If you’re interested, and would like to start with a micropet, my friend code is F9AQBHSE5D.

    The other main form of gamification I use is Habitica. In this one, you have a little pixel character, that again you can earn ways to dress them up. You can also set real life rewards, if that happens to work for you. There’s also quests to go on, to defeat monsters. This really helped me for a long time to carry out cleaning, and such tasks. I might use it again to encourage myself in my studies. I do tend to set fewer dailies, because these give damage when not completed, which can become demanding.

    I find the novelty of a little game a good way to work around perceived demands. It especially helps when there’s little to no consequence to skipping a task, but a boon to completing it.

  • How does a PDAer study?

    I have a lot of demand anxiety about studying right now, so I’m going to avoid by making a post about what usually helps me to study. This may or may not work for you, or it may help you think on what would work for you to be a student – take or leave whatever does or doesn’t feel right.

    1. ‘Just prepping’
      • This involves getting the layout of the desk right. Loading my OU page that I need. Writing out the title, date etc on the page. Sometimes telling myself ‘I’m just gonna prep’ gets me going (and today, it wasn’t enough.)
    2. Just do five minutes
      • Set a timer for 5 minutes. I promise myself I can definitely stop after 5 minutes – but I try and get that amount done. I’ll have 5 minutes more work done than I would, I might find my flow.
    3. Avoid one study task with another
      • Too anxious to make new notes? I review some old ones. Or type up handwritten notes into new. Or work on a different section of the course – the OU is very useful for this, because you can leave something you avoided unchecked, so I know to return when I feel able.
    4. Set a flexible study calendar
      • I find it best to put loads of potential sessions into a schedule, and then use flexibility with them.
    5. Study at the Open University
      • Lower social demands. Eased me into studying in the first module. Flexibility on when and where to study – no requirement to attend lectures in person. Not even a requirement to attend tutorials unless I think it’ll help. I also get to study the Open Degree, where I can freely choose my modules (Undergrad and Masters available.)
    6. Following my passions
      • For me this ties into the Open Degree. I don’t have to force myself to study any modules that aren’t truly interesting to me. This could also look like studying your dream subject.
    7. Pomodoro
      • This is a technique of studying for X amount of time, and then a break. Usually it’s 25 minutes, can be 50. Could be much less if that’s what I need.
    8. Twitch study with me streams
      • I love these. You get a little community to chat with on breaks, gentle study music playing to keep you focused, and the sight of someone actively studying as you go. Very helpful with ADHD-blocks.
    9. I believe the OU will have some study with me sessions as well, and they have an Study With Me discord.

    These little ideas help keep me on track most of the time. And writing this has me feeling more inspired to Study!

  • Demand cup update

    I haven’t posted about how full my “demand cup” feels for a while. This is based on Tomlin Wilding’s concept here: http://tomlinwilding.com/the-demand-cup/

    Right now, living in my own home on my own provides a lot more autonomy than I’ve had in a long time. I can do things on my own terms for the most part.

    I also have the support of carers for activities of daily living, which takes a lot of demands off my plate. That’s super helpful a lot of the time, though I need to be careful it doesn’t make the demands harder to meet in the long term. If you’re struggling as a PDAer, you’ve a right to a Care Act Assessment, if you have an autism diagnosis. Talk to the PDA society enquiry line to find out more about this if you think it would help you.

    I’m managing university study – I think because this fits into my “PDA flow”. It’s a very autonomous choice to be a student, and I’m on a very autonomous degree. It’s enabling me to study areas of specific interest in depth. I find I actually study better with a bit of guidance, and structure – I actually find autodidactic learning more demanding at times, as I have to provide all the structure and content for myself. I also like knowing that my learning leads to a useful outcome.

    I’m managing to get outside a lot more than I used to. I’m trying to avoid impulsive spending, though this is a real struggle.

    All in all, for most of the time, things are going well. However, I do get times when I hit a brick wall of no demand capacity. This is particularly when trauma symptoms are bad at the moment. I’m hoping therapy and my new mental health team can help me with that over time. For right now, things can be somewhat difficult with that. Mostly though, this is an ideal living arrangement for me, that protects my demand cup from overflowing.

  • Maths in words

    I want to share my method I found during my stats class at Cardiff University that seems to work for me when it comes to learning maths procedures.

    It involves focusing on learning the procedure in words. Focusing on the concepts, expressed verbally. Writing these out as a questionnaire was a great way for my mum to help me revise for my stats exam, and I managed to get a first!

    To use an example from my current studies:

    How do you convert a time expressed in years to one expressed in seconds?

    Multiply the time in years, as in expressed in standard form, by the amount of seconds in a year, as expressed in standard form. This gives the amount of seconds in each year in your original total.

    I don’t want to practice using the formulas – including the numerals leads to errors. I was always told I was ‘overcomplicating things’. However, it’s more that I simply can not use formulas unless I actually grasp the underlying concept – and so long as I revise the concept of the procedure, I don’t seem to even need to practice the formula to use it!

    I hope this might be of use for someone else out there (and please correct me if I’ve gotten the concept wrong in the example given, I’ve typed it out from memory from only having begun to work with it).

  • Unmasking when PDA

    I saw this post: https://www.instagram.com/p/C_lcEEEOSI3/?img_index=1 as a repost (I’ve linked the original here).

    I think it’s a pretty good list of suggestions for ways to unmask. I definitely do a lot of them, especially fidgeting and stimming in ways that feel comfortable. Connecting to the autistic community online has been like a homecoming for me, meeting fellow PDAers felt like I finally made sense as a person. I also work more to meet my sensory needs and to communicate these to others and ask for help to meet them.

    However, this isn’t the full picture for me. PDA requires some other things to be unmasked.

    A big start for me was tuning into my demand anxiety. I noticed that I met all the criteria for PDA, but couldn’t identify that feeling of anxiety at demands at first – but I knew I was very dissociative. With the help of brain spotting, I’ve become much less dissociative and I’ve become able to notice that bodily feeling of demand anxiety.

    That leads me to actively avoid rather than fawn. Fawning was a trauma response developed as the only way to maintain control and felt safety in times of abuse and trauma. It wasn’t healthy though, and lead to further traumatisation. Leaning into my desire to avoid, and to be in control of my choices has lead to a much more autonomous life. It also enables me to live openly as a PDAer

    Doing that means communicating about my experience of demand anxiety. Part of that recently has been creating my PDA flip chart (which you can see photos of here: https://www.instagram.com/p/C4ftcawsQuq/?img_index=1), which helped explain this experience to staff on my psychiatric ward. I talk to my mum about PDA as well, and she understands me a lot better now. I can advocate for myself much better now, which I am really glad for – it helps me protect myself.

    Ultimately, the biggest form of unmasking is looking for that autonomous, low demand lifestyle. It’s why I wasn’t happy to accept supported housing for a second time. It’s why having my own independent flat is lifechanging for me – I can do as I want, when I want. Equally, having carers really reduces demands on me, which makes life much healthier.