PDA fae

Category: PDA

  • 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.