PDA fae

Tag: neurodivergence

  • 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.

  • 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.