PDA fae

Author: plumfae

  • How I cope with “thought looping” (rumination)

    I spend a lot of time, particularly when trying to fall asleep, thinking much the same thoughts over again. Always negative, about the past or future. A common one is “everyone hates you.” I also find myself thinking “I’m not right for anyone”, “I’m too much and yet not enough”, and generally beating myself up. There’s also future related thoughts, anxious in nature. I worry that I’ll always be alone. That I’ll never gain a life I find meaningful. That my disability will prevent me having anything I want in life.

    The title of this post says “how I cope” and maybe that’s a little optimistic. I actually really struggle with these thoughts and have done for a long time. For many years, I ruminated about trauma I had been through, which was horrible.

    So maybe this should be an explanation of ways I, and maybe you, can cope?

    I already journal, and sometimes that just becomes a written form of rumination for me. I find myself covering the same ground day after day. I sometimes try to find a more positive outlook when journalling and this can have a positive effect – but I definitely don’t experience journalling as allowing me to stop holding onto thoughts. This can work well for some people though.

    An idea I’m intrigued by is verbalising, maybe even writing down, the opposite scenario to your anxious worries. Then spending time imagining that instead. I often imagine how more negative scenarios would play out, to help me feel I could cope, but this probably just helps convince me they’ll happen. Imagining the opposite sounds like a better way to do things, I reckon.

    Playing a lengthy meditation can help soothe my mind whilst I’m waiting to fall asleep. For the duration, it takes my mind away from those loops by redirecting me to the audio and my breath. It’s not a complete cure, but it is a good way to get some respite.

    Something else that’s suggested is using a mantra. I’m not sure this would work for me, because it already feels demanding to keep that kind of thing up. That, and very out of character for me. Perhaps I should give it more of a try, but I don’t think this is for me.

    Those are the suggestions I think could work whilst trying to fall asleep. There’s also exercise, and distractions and other more active strategies for the day time. Obviously, these aren’t an option when you’re in bed.

    Where I sourced my suggestions

    attncenter and ADDitudemag

  • Struggles and self care

    Recently I’ve been struggling a little. Not so much with mood, more with anxiety, chronic understimulation (and comparative overstimulation), insomnia, and resulting distress. I am worried that the insomnia in particular will eventually affect my mood. Me and my psychiatrist do have a planned med to add in if my mood does wobble. He’s not a fan of polypharmacy, so is choosing to keep to just lamotrigine for now.

    Why just lamotrigine? Clopixol injections became way too much for me. Partially because I found it more demanding than tablets, partially because travel is making me increasingly anxious. Mainly though, because I have a lot of medical trauma and injections were causing me increasing distress.

    The anxiety is caused largely by my loneliness. I guess I forgot to mention that earlier. I feel, though it’s likely not true, that I struggle more than the average autistic person with making and sustaining connections. This is based on seeing most Autistic people talk about their romantic partner, their handful of close friends, and suchlike. I have none of those. I’ve also met a handful of people recently, and just can not form a bond with them. Maybe it’s six of one, half a dozen of the other (literally, equally our faults). It’s hard not to feel, though, that it’s solely because of everything listed in my autism report that concluded with “another reason El will struggle to make and keep friends”.

    This anxiety centres on the worries that:

    • nothing about this will ever change
    • is it because there is something inherently wrong with me
    • how will I ever enjoy life or find meaning

    Finally, the chronic understimulation of spending all my time alone when I am at home. Additionally, much of my time outside the house is spent alone, aside from around 4 hours at the local community hub. I have a pet theory that this severe understimulation is leading to an intolerance to any level of increased stimulation that occurs, whilst also in itself deteriorating my situation. I am not sure though, certainly I don’t expect there to be any research out there that would confirm that this is a phenomenon.

    So the end result of this is that last night I ended up experiencing a lot of distress. I had spent my sunday in a new way: getting a taxi ride to spend time in the local costa and entertain myself around people. A taxi because there is no bus provision here on Sundays. Very expensive, and not just because of the taxis.

    Overstimulation in comparison to my norm, for one. Also seeing a lot of people in groups, heightened my loneliness. I then tried reaching out to the few internet connections I had, but struggled with feeling to negative. Mainly because people responded in a way that suggested that. I texted a helpline, which vaguely helped.

    In the end, at 10pm I called my mum and she helped me co-regulate. This made the rest of my night awake – yes, the full night till 6am – manageable. Still awful though. I had been awake since 3:30pm the previous day, and had burnt through my ‘try this now to pass time’ capacity. So I spent numerous hours doing nothing but feeling crappy.

    I can see that now as taking much needed low demand time. Not quite “demand free” because my emotions felt demanding. However, it also meant I managed to “sit with” my emotions. I can recognise both of these as self-caring responses. Eventually I felt able to start to do little things to pass the time, and became sleepy at 6am.

    My self-care has continued today. I spent some time with family, and as planned, my mum is here with me now sleeping over the night. I have taken some demand free time. I have tried to move my tiktok feed to a more positive one. I also spent about half an hour simply sitting and playing with my collection of stim toys. I often forget how important stimming is to ADHD and autistic nervous systems. I’ve also spent time journalling.

    So tonight is a lot more bearable, even if I am still awake at the wrong time.

  • Being PDA in an allistic world

    It’s a hard existence for sure! I’m sure many PDAers born in the 80s and 90s can relate to the experience of growing up misunderstood by everybody. Parents, teachers, nearly every adult we interacted with took our avoidance and demand anxiety for defiance. I know I was met with harsh treatment (and worse) to gain compliance, and I still very frequently struggle to feel safe enough to do anything but fawn.

    Many allistic people view avoidance of a “reasonable” request as defiance, entitlement and/or laziness. They don’t see any other explanation. This seems to be likely, to me, be due to there not being any other reason to not engage in communally orientated behaviours (i.e. complying) for allistic people. That’s just my perception, based on living around them though. Even though many people feel that they don’t like being told what to do, it’s still felt that not doing so is just defiance. They struggle to comprehend going beyond mere dislike, to severe paralysing anxiety that prevents action.

    As a result, many resort to strategies and approaches that just make things worse. I’d hope most don’t resort to violence, intimidation and humiliation – but I certainly know these things can happen to PDA children! I often feel that everyone has something they will use some level of force to obtain compliance and this leaves me feeling very scared at times.

    I really wish I could find more people willing to use a PDA friendly approach. It’d include gentler language, such as declarative phrasing. Challenging hierarchy and “have tos”, allowing for flexibility and collaboration, and respecting my need for demand free time.

    In the meantime, there’s work for me to do in supporting myself, regardless of anyone else’s attitude. I could learn to use gentler phrasing with myself – I still often say “I should/I need to”. I would greatly benefit from feeling more able to set boundaries around my willingness to comply. I am at least becoming stronger at self-advocacy, for example, creating the PDA flipbook to help professionals understand me.

    Something I’d really like for the future is to find more neurokin to connect with. I really enjoy interacting with PDAers, it makes me feel like I “make sense”.

  • Sometimes, spontaneity helps

    Just now I was trying to motivate myself to brush my teeth tonight as well as this morning. I really need to try and meet this demand more to protect my teeth and gums. I have gum disease with a lot of recession and wobbly teeth. Of course, the importance ups the level of demand.

    What worked tonight was to acknowledge my resistance and to back off on the pressure. I engaged in other tasks, like unsubscribing to email lists I no longer need. I accepted I may not be able to do this task, no matter how important.

    After a little while, I found myself spontaneously standing up, and heading to the bathroom. No thought, such as ‘let’s go brush my teeth’ preceded this. I just stood up, ready to undertake the action.

    I’ve found this at other times as well, on occasion. It doesn’t always work, but sometimes, allowing spontaneity in action shifts avoidance.

  • An important article

    Sally Cat’s piece fully articulates all my thinking on why PDA may not be autism at all.

    It very much does seem shoehorned into autism after the removal of PDD-NOS. This was an attempt to remove different types of autism, and now we are left with a “subtype”, that doesn’t have a true diagnostic home.

    It’s a frustrating home, and one I hope we can build enough research for to resolve for the next editions of the DSM and ICD.

  • How you can support me (if you’re able)

    I wouldn’t be here without you. Every bit of support helps me keep creating, and I appreciate it more than words can say! https://ko-fi.com/plumfae

    I live on a low income, so I really appreciate any support you can offer me if you’ve enjoyed my content!

  • The delicate balance

    Recently I’ve been neglecting to make use of the tricks I practiced whilst living in supported housing. Things like “just do five minutes”, using a visual timer, “just prepping”.. I’ve not been using them.

    In part because having carers takes some of the load from me – I can use them to get things done where avoidance makes things difficult. Unfortunately though, this does not foster independence in the long run, and may set me back if I become reliant on this.

    Tonight, I said to myself ‘just wash up five things’ and I ended up nearly clearing all my dirty dishes. I let myself do a half-assed job, knowing that any job worth doing is worth half-assing. That relieved the pressure of demand anxiety, which had been preventing me from a number of tasks recently.

    I have a laundry pile that’s unwieldy. I couldn’t shower yesterday. Days went by with no dishwashing. I still haven’t changed the bedsheets.

    It’s all about making little tiny steps forward. Not pushing too hard, and respecting my PDA for protecting me. Protecting me from overwhelm, burnout, chores themselves. Gently easing into care tasks, and being gentle with my bodymind as it resists and then finds a way to proceed.

    Life with PDA is a delicate balance, it seems.

  • Sports for confidence!

    I’ve signed up for a local scheme called Sports for Confidence. I’m not sure if it’s specific to my county, or nationwide, it might be worth looking out for. In short, it’s a disability specific sports scheme, run by occupational therapists.

    So far I’ve only managed to attend one session. I want to go, it’s great to meet fellow disabled people. I mainly attend the swimming session, or would mainly attend, rather.

    Unfortunately, it can become a demand. The OT expressed strong hopes that I would enjoy the group, that having come once would make it easier to come again. Knowing that the staff really want me to go makes it very demanding for me.

    I do need to be more active and meet more people. I also need OT input in my life (my social worker has referred for mental health OT support as well). Hopefully getting more active might help with my chronic pain from my scoliosis surgery.

    I think what would probably help would be some declarative language around the sessions: I get to go. If I want to, I can attend. The group meets soon, I wonder if I want to go this week.

    Hopefully I can find a way to attend more often, that doesn’t involve simply fawning.

  • lack of self belief

    I’d love to create a peer support company for PDAers in time.

    It’s just one of many things I’d love to do in theory, but in practice feel so lost on how to achieve them. A lot of me feels like I’m not someone capable of achieving goals and ambitions, of pulling a project to fruition.

    My self belief is at an all time low right now, and I don’t know how to alter that. Brainspotting might be able to help some, and I should really be working on it in my own time outside of therapy sessions.

    A lot of my feels like it’s just inevitable that I’ll bounce in and out of hospital. Some of me feels that accepting that would just be a lot easier. It feels like this loss of self-belief comes from the after effect of my recent admission, and the period of time after where I’ve not had any opportunity to achieve anything.

    Instead, I’ve had to defer my studies. I’ve been passed up for meaningful volunteering at the local community hub, being told ‘oh you can just help like you always do here, that’s enough’. It’s not enough, it makes me feel useless and like no one has any faith in me. Similarly, my social worker telling me to take things one thing at a time made me feel a similar way.

    The sense that no one else has any faith in me, and that I’m not achieving leaves me doubting my capability to pursue such a goal as setting up a small business. I see others launch into such a thing, and I have no idea how they have all the know how for such a project.

  • An update to my Kofi

    I’ve added a little shop for PDA related PDFs. Right now I have just one, about exploring a potential PDA profile.

    You can check it out here:

    My kofi shop

    I hope this little offering is of use to someone!