PDA fae

Tag: PDA

  • Realising I’m PDA part 1

    I had started working with a peer support provider, L, at https://www.chimetothrive.com/, hoping to get help with advocacy in the mental health system to get them to properly address my trauma symptoms. Unfortunately, due to my manic episode I didn’t manage to achieve this before L had to give up advocacy work, switching to solely peer support.

    What did come from my work with L was identifying my PDA autism. I had one session, and afterwards we both independently realised that neurodivergence was something that I needed to explore. I compiled a list of traits I felt I met, and she came back to me in the next session and said ‘yes I definitely felt that neurodivergence was something that was present when we met’ (or words to that effect, it’s been over a year).

    I was lucky enough to live with a speech and language therapist that worked in the field of autism diagnosis, and I discussed my suspicions with her. I noticed that the one area of autism I didn’t seem to meet was routines and need for sameness and this puzzled me. I find routine very constraining and restrictive. The thought of living days in the same pattern for a long time makes me feel trapped (I’m already struggling with the sameness of my days since starting work).

    I also noticed that I wasn’t typical in my use of imaginative play as a child, and that many people had felt that whilst yes, I lacked social skills, I couldn’t be autistic. I didn’t struggle that much. Except, I do because I meet the criteria for PDA, which includes superficial social skills. It also explains my comfortable use of imaginative and role play.

    The part I really related to was ‘intolerance of uncertainty’ and ‘anxiety driven need for control’. I’ve always known these things about myself. Feeling out of control is really not tolerable for me. Feeling uncertain about an outcome, or unable to control an outcome makes me very anxious. I like to be sure of things, and in control of myself and my surroundings.

    Perhaps oddly, the part I had to do some introspecting about was actually the obsessive avoidance of everyday demands. I’d learnt to fawn due to trauma. I also masked heavily. I believe I learnt to dissociate from my own experience of demand anxiety. I’ve actually noticed that since I clued into my demand anxiety, I’m experiencing a lot less depersonalisation and derealisation. I had to start to pay close attention when demands occured, and when as I did so, I noticed the initially subtle tension that demands on me induced. I realised that I definitely do experience demand anxiety. Since noticing it, it has sometimes become harder to meet demands, because the anxiety is aversive. I can more easily feel my nervous system saying No, and it’s hard not to listen.

    Unfortunately, due to stresses in my shared house and not being on bipolar medication, in the summer of 2021 I became psychotic. This created a lengthy pause in my exploration of my neurotype. L did write to the doctors of the first ward I was on to advocate around my PDA. I also advocated for myself, despite my manic state which I am quite proud of. L says that when I was manic I was perceiving demands in everything, which was making me very agitated and often angry. Certainly by the time I was on the ward, this was the case and I had some spectacular meltdowns.

    It was a year later that I received my official diagnosis, which I will talk more about in a later post.

  • Worries

    Something I worry about a lot is that my supported accommodation won’t be able to help me because I’m a PDAer.

    They always reassure me that there’s time, that it’s just making slow and steady progress and I’ll get there.

    I know that I’ll always be avoidant. It doesn’t feel like housework will ever not feel demanding. I can’t envisage not coping by avoiding the quiet obligations of life.

    I don’t know where the balance lies with being PDA. What does ‘healthy’ look like in PDA? Would it be healthier to refuse to comply when people place demands on me more often? Would that help me to cope with this type of demand better? Is healthy a matter of finding the coping strategies that work for me personally, and then being able to do things?

    Learning I’m PDA in my 30s feels like being left in the middle of a forest without a map. It’s totally uncharted territory for me – I have demand anxiety, I used to dissociate from now and now I’ve allowed myself to actually feel it, and it’s really There. Sometimes I feel like I made life harder for myself by listening to myself on this, and that it was a mistake to realise that I have demand anxiety.

    Maybe it’s gonna get easier, but at the moment I’m very swamped by the DA about adulting and I just can not.

  • Continued success

    In further ‘tidy only one thing’ success, my dining table has a lot more free space on it now.

    This rule isn’t freeing up enough demand capacity to get this entire tiny flat sorted, but just enough to do one small piece on my own. I’m still recovering my demand capacity after my hospitalisation from August 2021 to April 2021- having to only meet the demands of ‘sleep at night, take meds when asked, eat enough to not worry us’ actually really depleted my demand capacity. There’s a video on youtube of a young boy talking about his PDA who says that allowing himself to avoid a demand makes it harder to return to meeting it later. I would say this year was a big example of that.. I left hospital thoroughly painfully understimulated, but with so little demand capacity that it took about a month of just watching tv on my laptop to repair the understimulation and start repairing my demand capacity.

    It’s been 6 months now. In many ways I’ve come on leaps and bounds – I’ve started a teaching assistant apprenticeship at a local SEN school. So obviously I can now meet an awful lot more demands than 6 months ago! It doesn’t feel like a truly accurate reflection of my capacity though, because that work fits exactly my PDA flow. I’m working with autistic learners, I’m very interested in education and the autistic experience of it after my year spent learning about autism as I realised I was PDA.

    So is that work ‘demanding’? Arguably not.

    Outside of work, I’m still struggling.

    But for tonight, one small success.

  • A small success

    I’ve been struggling with maintaining my flat for a while now. I experience it as a big ‘ought to’ and I also find that I rebound with avoidance on this sort of task after complying with externally induced demands from other people.

    Telling myself that it’s ok, I don’t need to tidy doesn’t work. Clearly, I do need to tidy, so it feels like I’m lying to myself. I end up spiralling back into ‘I do need to tidy’ which becomes ‘I need to tidy everything’ which leads to ‘I can’t tidy’.

    What seems to work a little better is telling myself all I have to do is tidy one single item a day. Just one thing, put away or thrown away. Then I’m not lying to myself. I’m slowly addressing the problem in a way that I find manageable – I can handle the demand to tidy one thing that I have choice over.

    A couple of times now not having to tidy any more has lead to feeling able and willing to tidy just a little more. Not everything, but more than just one thing. I think this might have been a hack I was looking for.

  • Where I’m at now

    I was officially diagnosed as PDA a month ago today, by Dr Gloria Dura Vila. In the last two months, I’ve started an teaching assistant apprenticeship at a local special needs school. In the last 6 months, I moved into mental health supported accommodation.

    This time last year, I was in the midst of a psychotic manic episode.

    Evidently I’ve come a long way in the space of one year.

    I had been living in a shared house, which did not work. Not after new people moved in, another flatmate suffered a bereavement and all the communal housework fell on me, newly realising I fit the PDA profile. The stress was a huge contributing factor in my becoming manic, and resulted in my being evicted in order that the council would have to help me find new housing as I did not have a guarantor for a new private rent.

    My CPN (community psychiatric nurse) found me my supported housing. It’s specifically for mental health needs, not autism though, which means the staff have absolutely no experience with PDA. I’m still awaiting my report from my assessment, and I’m hoping that once I have that I can push for staff to receive PDA society training. Also, there’ll be recommendations which should help.

    For now, I’m doing a lot better than I was before – work, safe place to live, new meds, diagnosis. On the the other hand, I haven’t yet figured out how to manage my demand energy to cope with household tasks and my flat is a complete tip. I’ll go into this in more detail later but because of childhood abuse, I fawn. That is, I comply with demands people place on me for safety. As a result of this, I avoid demands that are implicit: you should keep a flat tidy. you should clean. you should brush your teeth.

    I haven’t yet found the strategies that go beyond using my support sessions to get a support worker to expect me to do those things, and induce fawning. This doesn’t feel healthy, and yet I don’t know what else to do.

  • PlumFae intro

    Hello. Welcome to this little corner of the internet, a blog about life with Pathological Demand Avoidance (or alternatively, Pervasive Drive for Autonomy). PDA is a profile on the autism spectrum. We avoid the ‘everyday demands of life’, and it’s entirely possible this entire blog will become a demand for me, but we’ll see.

    For as long as this isn’t too demanding, I’ll be covering my journey as a PDAer, including my trauma and the reasons I resorted to fawning as my primary strategy, dealing with bipolar type 1, my recovery from both, and my queerness. As I discover things that help, I’ll share them as suggestions you can consider if you wish.

    Because of the sensitive nature of my content, I will be remaining anonymous. You may refer to me as PlumFae.