PDA fae

Category: neurodivergence

  • 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.

  • Neurodivergent distress coping

    I made this christmas tree decoration on a night I was really struggling:

    Now that’s not a brag. It was actually completely the wrong coping mechanism – it lead to my becoming so distressed I toppled my Christmas tree! No damage done, to me or the tree, so nevermind but still. Trees are not playthings!

    So I had to rethink the ways I was trying to cope: too much tv, crafting, distraction.

    What I needed:

    • stimming
    • sensory items like my weighted blanket
    • lava lamp
    • radio music
    • spotify music
    • taking a break from christmas
    • opposite action: opening some of my own presents that I’d bought for myself/one my mum got for me
    • radically accepting
    • a little clock for my kitchen so I could be aware that time is passing
    • engaging in special interests – and strewing them around the room for a low demand way to spark interest

    Using these methods has helped me work better with the home treatment team. With good communication about my being autistic and PDA with them, they did an excellent job of adapting their approach, and I’ve impressed a lot of them.

    You can cope with distress and crisis as a PDAer – you just need to work with your brain and not against it!

  • responsibility update

    Still hitting the mark on responsible (apart from one or two minor wobbles). I saw the section 12 drs and aced it! So now I have all the meds I actually need and I feel calm and sleepy.

    Just managed a basic dinner, so that’s food in me.

    I’m doing pretty good!

  • “Radio days”

    This is something I’ve discovered today after putting radio one on in the morning, keeping it on after my mum came to see me, and then returning to the radio when we got back. I’ve actually kept it on into the evening, so it’s been a whole day of radio shows.

    It’s actually very regulating for me. It’s like having background company, which reduces loneliness. It’s also lower demand than tv – you can tune your attention in and out. Pay close attention to the funny chat, let a song be pretty in the background.

    One thing is that sometimes you do have to ignore a song you don’t particularly enjoy. I found the giggles from the commentary made that worthwhile today.

    I think I will try and make time for radio days, much like I do for demand free time. I think they may become equally important for my mental health.

  • Emotional flashback.. again

    I’ve been super anxious recently. My antipsychotic depot’s cause this each time so far outside of hospital, for Trauma Reasons. This weeks was better, in that I didn’t get a week of intrusion symptoms, but I did get nightmares the night before.

    I was also extra-sensitive to loneliness. I’m not entirely sure why that’s what came up. I suppose it might have been an emotional flashback. The feeling: all alone in a hostile space, post trauma.

    I emailed the PDA society, my therapist and SANEline, all of which have been good sources of support for me in the past. I also tried nightline for an immediate response, which has historically been the best helpline I’ve used (it’s by students, for students, term time in the UK). It wasn’t so helpful this time, and I should have ended the webchat much sooner – it amounted to a degree of emotional self-harm that night.

    Thankfully the email responses were a lot stronger. The PDA Society supporter urged me not to give up hope of making connections, though they edged on advising learning to mask better which I’m not 100% on board with. They talked about working with a professional and trusted family member/friend to work on mastering ‘social do’s and don’ts’. I can see some use for that, but it’d be nice to get advice on ‘here’s how PDAers meet people they can be themselves with’. I do appreciate them being able to supply recommendations for professionals that can support.

    SANEline suggested hobby groups, and offered questions for further thought. I still need to respond, it’s likely to be a validating discussion. That’s what I find SANEline are most useful for when I talk to them.

    My therapist had the best response, which is perhaps unsurprising given she knows me as an individual. She stated that perhaps humans are not the most reliable source of connection. As such, she suggested that maybe I need to spend some time at a Cat cafe to get some oxytocin. She also reminded me that I can brainspot in my own time to strengthen my brains awareness of my good qualities.

    So I put that into place after my depot injection. Headed straight to the local cat cafe. A kitty prompted clambered straight onto me and wanted to be held for hours. Definite oxytocin hit!

    Following that, I went to the local MH hub to talk to some humans that understand. Had a couple of in depth chats, some light hearted chatting, did a tiny bit of studying. As my therapist predicted, it wasn’t as secure a source of connection – but it was still valuable.

    Then, tonight I had too much demand anxiety to sleep. So, I put on my lava lamp for the first time since being here and chilled out. Over the time I: read my queer fantasy book, read up on developmental psychology to prepare for research assistant volunteering, used Finchcare, and sat and watched the lava lamp to the sound of a fire-scape video on youtube.

    That last activity made me fixate my gaze on the lava lamp, and I began to notice feeling unusually soothed. Gaze fixation is a big part of brainspotting, so I checked if there was another location where that sense of soothing increased. There wasn’t – at the angle I was sat at, my lava lamp seems to fall in my “soothe spot”. I tried it again later in a different room, and yup it’s the spot.

    So I haven’t done the exact brainspotting my therapist recommended, oddly enough – but I have done that! I also did the “injection trauma” spot before leaving my flat to get the depot injection, which does seem to help me cope.

    Now I’ve written it all out, it’s clear to me that was another layer of emotional flashback caused by depot injection. A shorter one this time. I attribute that to the process of brainspotting I’ve started on this trauma. It’s good to now have a brainspot I can use to soothe my way out of emotional flashbacks/help me through them till they end. It’s a reminder that there’s a good reason to meet the demand my therapist gave me to strengthen the neural re-wiring in my own time.

  • Module begins

    It’s the first week of the module, and I’m a week ahead. That’s because the website opens before the module commences, not because I’m superhuman and studied two weeks in the first week of term.

    It definitely feels better to be a week ahead. There’s less sense of pressure, and if I can keep up this way, I can take a rest week if I need to. I’m not sure if it’s going to be possible to get any further ahead with this module. Every week involves a lot of notetaking, so cramming two weeks into one would be very intense.

    I feel more confident now that I’ve managed a week of study in an actual week. Prior to the module starting it had taken me two or so weeks to complete the first weeks study – I think having the actual time pressure helped me register the importance.

    I like that this module moves frequently between sciences, that will keep my brain engaged and curious. I have to think about it little bit by little bit, because thinking all the way to May makes me feel rather overwhelmed. Instead, I’m trying to think in terms of tutor marked assignment (TMA), by TMA. Taking each one in turn, and focusing on the work each one needs as they come up.

    The TMAs on this module are lengthier than I’ve been used to on my previous module – rather more demanding! With gentle self care, perseverance and persistence, I shall tackle each one with mindfulness of demand anxiety. I foresee a lot of demand free time in my future!

  • 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!

  • 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.