PDA fae

PDA, ADHD, Bipolar lived experience

  • Therapy

    I’m lucky enough to have an autistic therapist, and it’s the most affirming thing I could imagine. I must have found her details a long time ago, they’d been lurking in my bookmarks for years until, during the process of understanding my PDA neurotype, I messaged therapists with a pretty strict set of requirements. Most baulked at them, but my current therapist understood completely and I knew she was the person I needed to be working with.

    She makes me feel ok to be me. Ok to be autistic, ADHD, PDA. Different. It’s so good to work with someone who doesn’t just affirm neurodiversity in the theoretical, but actually lives a neurodivergent life. Someone who understands what it’s like to be a little unidentified autistic kid, and the way that affects you as an adult.

    Something she shared recently really stuck with me: autistic distress doesn’t look like neurotypical distress and therefore it tends to go ignored. Adults believe the neurotypical kid in a dispute, doctors don’t realise how badly your past is affecting you as an adult.

    To me this feels like a small part in a larger bias against autistic people. I really struggled with this last year, before I was hospitalised – it was “autism awareness month” right at the beginning of my self-discovery journey which really didn’t help. It doesn’t feel to me that this world is very good at accepting autistic people as they are. Obviously, there’s things like ABA as an example of that.

    I think the reason I feel it so acutely is that when I was a kid, the adults around me did not like, let alone value, my autistic ADHD self. Compliance was forced, stimming and hyperactivity were stamped out of me, sensory issues were ignored. At primary school, I was ostracised and bullied, including by the teachers. Home wasn’t necessarily any better, or safer, and I learnt to mask constantly. I learnt, without even knowing, that who I actually was, was bad.

    So, I’m grateful to have a professional that sees me for who I am, and values that completely because she shares my autistic experience. Talking with her makes me feel so seen, as if for the first time. For an hour, I’m in a little bubble where we celebrate our autistic selves, whilst validating everything that can make autistic life so hard. If you can, find a therapist who shares your neurodivergence, it’s invaluable.

  • GIC referral

    My GP agreed to make a referral to a gender identity clinic today, which is really exciting. A lot of me can’t even believe I’ve really dared ask for this. It’s a two year waitlist to be seen for the first time which isn’t great, but as of today the process is officially started.

    I’m hoping for top surgery, because my boobs bring me a lot of dypshoria. Unfortunately, my GP informed me that in order to be eligible for surgery, I would need to spend the two years of waiting losing weight.

    Which is a huge demand.

    It’s going to be so difficult to sustain keeping active to see sufficient weight loss. I’ve been looking up beginners home workouts, and the more I looked, the more my brain went ‘no no. nope. no way’. It’s not even that I’m not motivated, top surgery is a brilliant motivator. Not having to live with so much dysphoria and misgendering is as big a motivator as it gets.

    But it’s a demand. It’s something I have to do.

    It feels impossible. Insurmountable. Something I’m never going to be able to persuade myself to do frequently enough to make any real difference.

    PDA makes life hard. It especially sucks when it gets in the way of something you’d otherwise really want.

  • My demand cup

    ‘What is a demand cup?’ I hear you ask. If you’ll tolerate a link, the best explanation is here: https://tomlinwilding.com/the-demand-cup/. Tomlin’s website is an excellent resource for learning about PDA, I highly recommend checking out more than just that page.

    Right now my demand cup is recuperating from my time in hospital. It’s capacity is slowly expanding, but is still somewhat restricted. I’m finding it hard to have faith that it will expand large enough for me to be able to handle more everyday demands than I can at the moment.

    I have a lot more autonomy here at the supported living than I did at a mental health rehab ward I got referred to late last year. That experience made very clear that autonomy empties my demand cup, and lack of it fills it right up. The autonomy of doing work (SEN TA) that interests me really helps me meet the demands of that work.

    I’m also doing a lot better emotionally, which really helps as well. I could probably benefit from taking more defined demand free time; I remember the first time I purposefully took some, it was complete bliss.

  • Nonbinary

    I’ve recently started transitioning to live as neither male or female. I’m nonbinary. Specifically, bigenderflux. Which is to say, my gender fluctuates in intensity from male to female, e.g. gender neutral, to very female, to slightly male etc.

    I’ve known I’m nonbinary for years. I realised in my late teens, around 17/18. It felt like my group of friends at the time were very much discovering themselves as either men or women, and refining those identities. All I could feel was ‘I don’t want to have to be either Male or Female’. I’m pretty sure I experienced the gender binary as a demand. I very much wanted to encapsulate both experiences, and to have both options open to myself.

    It was from this feeling that I discovered the concept of nonbinary genders, and felt so at home. I explored a range of identities, gender fluid being one of the main ones. None felt right until I took this quiz and discovered the ‘flux’ gender identities, and coupled it with bigender.

    In the last 6 months, I’ve changed my name to a gender neutral name. My parents are largely ignoring this, meaning family friends simply haven’t been informed. At work, and at my supported accommodation though, I’m referred to by my new name and it feels so good.

    Tomorrow I have an appointment with my GP to ask to be referred to a gender identity clinic. I’m hoping to eventually get top surgery as my boobs cause me dysphoria (as does my height, but that’s not really possible to change).

    I also need to widen my wardrobe so I can present more masculine as well as femme. My friend has been helping me with this, and my key worker is planning to give me support with this as well. It’s really good to have people validating me and helping me with this. It’s good to live authentically.

  • 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.