PDA fae

Author: plumfae

  • Notes from therapy

    I’ve been worrying for a while that I might be a ‘failure’ at my supported living, in that because I’m PDA as well as mentally ill (it’s mental health supported living), the staff won’t be able to support me to eventually live independently. Most people, when I bring this up, tell me that it’s a process and I’ll make progress over time. To have more self-belief that I can achieve this.

    Unsurprisingly, the person who understood the reason for my worry was my therapist. She understands how disabling PDA, autism and ADHD can be, and said it’s possible I may not be able to. She also stated that being unable to live independently is not a failing. At one point, she praised me for thinking about the future and I said most people tell me to stop trying to think so far into the future. I love that she knows that as an autistic person, I want some sense of certainty and predictability, so I will naturally try and plan the future so I can feel safe.

    We also discussed ways to try and meet independent living tasks. She suggested maybe deadlines would help, or maybe I need someone to say ‘this needs doing Now’. We considered entering tasks in a diary to see if they would create a deadline that helps, or if they create demands that hinder.

    I need to explore further whether using others for prompts is relying on not feeling safe to avoid demands from other people, and whether this is relying on a trauma response. I do agree with my therapist, healthy lies in choice – to comply, or avoid. PDA avoidance isn’t a choice, it’s a threat response generated by the neurotype. My response to demands of complying also does not feel like a choice, it feels like the The Only Safe Option, and it would be nice to feel safe enough to avoid. I suppose though, this should be being able to avoid as a choice.

    I talked about how since discovering PDA I worked on feeling safe enough to actually feel demand anxiety. Taking some time when faced with a demand and being curious about how it made me feel, gently, and discovering that yes, it’s stressful, there’s anxiety. I do wonder though, after the session, if I’m not feeling safe enough to feel demand anxiety in response to demands from other people. I think it might do me good to work on sensing the demand anxiety that arises during interactions, and creating safety to have choices, including the choice to avoid.

  • Hobbies

    I’d love to have a little set of hobbies I regularly return to. Unfortunately I find sustaining engagement in hobbies really, really difficult. I suppose because I want to engage in them, that very desire causes them to become demands – I want to engage in them, and to fill that want, I need to engage with them. Additionally at times, it may be a ‘want to want’, something I want to be in my PDA flow, but actually isn’t. At least, at the moment. Possibly also ADHD may be involved in these difficulties.

    Something I manage to do on a semi-regular basis is knit. Last Christmas I knitted a wreath with the help of my mum, largely over the course of Christmas eve and day. Unfortunately, I didn’t have a lot of demand capacity at the time and was living in a very PDA unfriendly mental health rehab ward, so meeting the demands involved led to me running out of capacity entirely and being discharged back to an acute ward. Or perhaps, not so unfortunately, as that lead to me moving to the supported accommodation which is a much better fit for me.

    At the moment, I’m trying to work on knitting squares to eventually be knitted into a blanket. It’s a very slow going process. I’m focusing on allowing it to be an imperfect project, accepting the mistakes I make as I go. I’m currently on my second ball of wool, having started in around July.

    I’d like to spend time learning to draw, relearning maths and french, and possibly learn some basic BSL. I enjoy embroidery, thought it takes a lot of concentration and I tend to completely balls up eventually. Baking is another pastime that I’ve enjoyed in the past and would like to get back to. I like board games, but don’t have much space to keep many more than I already have (and playing the same ones gets old after a time). There’s a TTRPG called Ironsworn that can be played individually that I want to play through some time. I have a mirrorless camera and get a lot of enjoyment from photography, but rarely know what I could use as a subject for that art. I used to read endlessly, but now struggle to commit to reading, and I’d like to engage in writing more poetry.

    So, we can see that I’m not short of ideas for hobbies. I’m just short on follow through and sustaining them.

  • Resources I found useful when learning about PDA

    I did a lot of research when discovering PDA in 2021 and there were a number of sources that had helpful information.

    Primarily amongst these was the pda society. I made a lot of use of their helpline throughout 2021, and would sincerely recommend their support to anyone struggling to understand or cope with PDA, adults PDAers included. Paula was very supportive and remembered my case after months of delay when I was too ill to be in contact with them, which I was very impressed with. The website is the first port of call for learning about the PDA profile with a wealth of information. This page is a great place to start learning, with a rundown of what exactly demand avoidance is.

    Facebook has a number of useful groups for PDAers, which I’ll list here:

    These groups are great places to find community and connect with fellow PDAers. I discovered that interacting with PDAers made me feel more understood and ‘at home’ than I had ever felt before.

    Harry Thompson was one of the first PDAers I learnt of. He’s written a lot on PDA, and maintains a facebook and instagram presence. Not everyone agrees with everything he says, he tends to aim to be a little controversial. Other PDAers that helped me learn were: Sally Cat, Tomlin Wilding, Kristy Forbes (great for parents), PrismCat and Riko. Having a range of perspectives is really beneficial, because PDA is a spectrum that presents a little differently in everyone. People have varying views on topics such as whether anxiety leads to demand avoidance, or just comes alongside it. PDA being so little understood, none of this has been pinned down exactly so there’s a lot of room for debate.

    Edited 8/3/23 I no longer recommend Harry Thompson as a resource.

  • When nowhere is safe

    I’ve mentioned a couple of times now that I tend to resort to ‘fawning’ in response to external demands from other people. What does that mean exactly?

    Harry Thompson offers a good explanation.

    In his post, he describes the situation where the child is safe at home to retain control through demand avoidance. That wasn’t my situation. My parents went to greater lengths to force compliance than my school did (and my primary school teachers went far enough), including the use of violence.

    As a result, I’m an adult PDAer who doesn’t feel like I now meet the criteria of being skilled in social approaches to avoid demands. These never worked for me as a child, every adult I was in contact with would force compliance through abusive methods. So now, I don’t feel like these social methods ‘work’, nor do I usually feel safe to attempt to demand avoid. Instead, I learnt to fawn for control in all situations.

    Edited 8/3/23: I no longer recommend Harry Thompson as a resource.

  • 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.

  • Low mood

    A big component of my neurodivergence is my bipolar disorder. Last year I had a big manic episode and became psychotic. I ended up in hospital, which is how it was identified that I needed supported accommodation.

    Now, my mood is a lot lower. It’s probably not a good thing that Taylor Swift’s Anti-hero is a trend on tiktok, because the words ‘It’s me, hi, I’m the problem, it’s me’ keep cycling through my head, because it sums up an long held self-belief. I’m trying to tell myself ‘I have problems, I’m not a problem’, but a lot of the time I just end up believing it.

    I’m finding life very mundane and dull. Things feel repetitive and that’s constraining, I feel like I’m living the same week over and over. Moving between the same few places: the school, my flat, the communal lounge, the swimming pool, my parents. It feels like there’s nothing that really adds meaning or fulfilment to my life. At the same time, I’m not sure what I could add that would make a difference to that.

    It doesn’t help that my flat has descended into a state of chaos. A support worker helped me tidy my bedroom and it feels like a little oasis. My living room is still a mess unfortunately. I find that working on it with someone else reduces the sense of demand and makes it possible to achieve. That’s not a long term solution as I won’t always have the supported accommodation, but it works for now. In the times between being able to get that support though, my flat is cluttered and untidy. It definitely isn’t good for my mental health.

    In general, depression is my usual. I get very little time in ‘normal mood’, instead I spend most of my time at some degree of low. It’s frustrating that we can’t really medicate for that, as antidepressants will make me manic. I just have to deal with it, and it really saps the enjoyment from my life.

  • Choice

    In a previous post, I asked ‘what does healthy look like for a PDAer?’

    My therapists opinion is that healthy looks like having choice. Freedom to choose to avoid or comply, rather than being ruled by nervous system activation and trauma responses.

    I suppose that means then, that it must always be an option to say no. There’s only true choice if you have the freedom to choose to refuse. I often don’t trust that there will be that freedom in interactions with other people, because so often growing up it was absolutely not an option. Perhaps practicing saying no more frequently would help me trust that I can do that.

    I wonder if I learnt to say ‘No’ more often, if it would help me choose to take on other demands in life as I’d feel more in control.

  • 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.