PDA fae

Author: plumfae

  • 7 months at supported living

    Time flies when you’re not an inpatient at a psychiatric ward. These past seven months have passed an awful lot quicker than the preceding seven months stuck as an inpatient. It feels so good to be moving forward with my life.. I’d say again, but really for the first time in years.

    After my first manic episode in 2015, I lost a lot of functioning. I attempted to return to university, but didn’t really cope. I wasn’t cooking for myself properly anymore, became very isolated, wasn’t able to sit my exams. Eventually I moved back home with my parents, until the 2020 lockdowns, becoming very depressed. In 2020, I moved to a shared house, but still wasn’t really functioning. I was more just existing. My quality of life was very poor.

    So I’m very glad that the one thing I managed to communicate in the first hospital last year was that I wanted supported living. The doctor there dismissed the idea saying, surely I’m too independent for that. Thankfully, at the second hospital, an OT did a activities of daily living assessment and that proved that I needed supported accommodation. The funding was secured, and my CPN found me the place where I live now.

    I’ve come a long way in the seven months of living here. I’ve started work for the first time in my life, as a SEN teaching assistant. I absolutely adore that work, it’s great to work with autistic kids. I’ve recently started attending social groups in a city I can reach by train. I had been quite worried that I wasn’t making social connections outside of the scheme, meaning that when I moved on I’d still be very isolated and lonely. So my keyworker helped me find some groups, and I’ve been making an effort to go to them. Tonight’s was a geek meetup, which is perfect for me.

    I’m also making a little progress when it comes to maintaining my flat. It helps that I’m motivated to have a nice space to decorate for christmas at the moment. I’ve decided that I’m going to store my clothes in bags for life in my bedroom, so they aren’t taking up space in the living room anymore. I don’t feel able to put laundry away in drawers at the moment, so having a designated place for laundry bags to live helps keep things under control. It was reading ‘How to Keep House While Drowning’ that gave me the idea. It validated that I needed an adapted system that worked for me, rather than ‘the proper way to do things’. I also cleaned out my hoover, disentangling things that had got tangled and preventing it from suctioning.

    I’m hoping that within the next seven months I’ll have made even more progress. Who knows, I might be allowed to own a kitty.

  • Keeping house while drowning

    If you’re on tiktok, you might have come across K.C. Davis’s account, DomesticBlisters. You might even be aware of her book, ‘How to Keep House While Drowning’. Or this might be the first time you’re hearing of them.

    I’d known of them for a while, but wasn’t sure if they’d be helpful when it comes to PDA style issues with keeping house. I was persuaded to get the book when my therapist endorsed KC’s methods. KC has ADHD, and post-partum depression, and her advice feels to me as thought it’s very, very useful for those reasons to be struggling to keep house. It focuses on self-compassion and seeing care tasks (usually known as chores) as morally neutral, rather than something that defines you as good or bad. Great perspective when you’re struggling with low self-esteem, low motivation and low mood. She also has a lot of simple, clear explanations that help with poor executive functioning, e.g. her five things tidying method. This breaks a messy room into five categories: trash, laundry, dishes, things that have a place and things that do not have a place. She advises dealing with each category in turn in order to resolve a messy room. This is a brilliant antidote to the ADHD experience of looking at a messy room and seeing nowhere to begin, something I have frequently experienced.

    I do wish there was a book on keeping house for PDAers. Perhaps it would be the ‘small book of housekeeping demands’ and we’d all avoid even reading it? I feel I’d find it useful to have a resource which included strategies tailored to the PDA experience. It’s tempting to consider a goal of working towards creating that resource, as I find myself wanting to work in adult ND peer support and this would constitute a form of it.

    That sets me to thinking what would be included in such a book. I think Harry Thompson’s concept of table tops and table legs would have to be part of it. I’m not sure a PDAer would manage care tasks on a regular basis if they didn’t form a table leg towards a driving, autonomous PDA current. They are, after all, the very definition of a demand. Something you really should do, something you have to do in life. Something a PDAer is going to therefore avoid like the plague, because having to threatens our personal sense of control.

    I suppose something else I’d put a strong focus on would be outsourcing the care tasks. I would try and encourage people to be self-compassionate about needing to live in supported living, needing a carer or a house-keeper. PDAers need support in life (we all do), and perhaps drafting someone in better suited to meet those demands is the best solution. It might even be so for me, after I move out of supported living, though I’m not sure yet if I’d be allocated the funding for a carer after living here. Maybe over time that will have to be explored, because it would probably be deeply useful for me to have access to that support long term.

    Rest is something I would strongly emphasise. To be fair, KC already includes this in her book, which is good. Everyone needs and deserves rest. PDAers often have a strong need for downtime to recuperate after meeting demands, or to prepare for meeting demands. In particular, demand free time is useful. I would also talk about Tomlin Wilding’s concept of the demand cup, and the corresponding emotion cup. I would want to find some methods in which we can look after the state of both, in order to free up some demand capacity for keeping house.

    But alongside the goal of creating demand capacity for keeping house, I would echo KCs ethos that our space exists to serve us, not us our space. As a PDAer, we’re not going to want to focus all our demand capacity on housekeeping in order to keep up standards (unless, that’s where our PDA current lies, I suppose.) I would place my focus on how we can keep our space functional enough, and how we can accept ourselves and offer ourselves compassion when we just do not have the demand capacity to cope, That’s my favourite thing about KC’s approach: we’re worthy of love, support, and compassion where we are now. We don’t need to meet societal standards of tidy, hygienic, clean, perfect to be worthy. Care tasks are neutral.

  • (untitled)

    Right now I hate being a PDAer.

    My knee dislocated yesterday. Immediately went back into place, but not without agony.

    It’s possible I have a hypermobility condition and I definitely hate that. Can’t cope that this is likely to not be the last time this happens.

    PDAers are known for having intense mood swings. My mood has tanked today. I’m irritable, hostile, angry, tearful.

    My mood, as I’ve said before has been low recently. I’ve been struggling to find enjoyment in life, and worst still, identify when I’ve ever enjoyed life. It’s not a lie to say that every season of my life has been traumatic in it’s own way. A doctor on the first psych ward I was on identified my autistic traits.. and thought I had dysthymia alongside bipolar. I wonder if he might have been on to something. When I’m not manic, I’m low. I don’t really do ‘normal’.

    So today feels like a double whammy of mood disorders and PDA mood swing.

    I feel like no one likes the unmasked me. The intense moods. The demand avoiding. The very real lack of pleasure I experience in life. The verbal hyperactivity. The anxiety.

    I feel like a problem. I feel like time and time again I cause problems.

  • 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.