PDA fae

Author: plumfae

  • Stimming

    I’m genuinely surprised I haven’t already written about this. I think one of the biggest parts of my mask was suppressing my stims (and hyperactivity) – in truth I am a wriggly, fidgety stimmy being. Forever drumming my fingers, bouncing my left leg, spinning a fidget spinner. Oh how I wish I’d had fidget spinners as a child!

    I’m not sure if I ever flapped my hands as a child. I started to when I was dating an Autistic woman who had this stim, before I even realised I was Autistic. I would apologise for copying her, but find joining in irresistible. If we’d known about the ways the PDA profile differs from non-PDA autism, I think I’d have gained a diagnosis much sooner (as it was, she said.. “you definitely have sensory processing issues, but you lack the rigidity I’d expect”). Nowadays I tend to shake my hands rather than flap them, as I find that more satisfying.

    Unfortunately, a cost of masking my stims as a kid was developing a skin picking stim. Everything else got me told off, but an actually self-injurious stim was apparently fine? I will never understand. Since I was eight, I have literally skin picked every single day of my life. It’s proven near impossible to stop. I had been making an effort to pre-hospital and I probably ought to try again. I do use multiple much healthier stims now as well, and I hope that’s building an armoury against this stim. It seems to be helping me use the self-injurious stim less, but not yet stop using it at all.

    I’m so glad I rediscovered the joy of stimming. It should be an Autist’s birthright.

  • “Excessive mood swings”

    The week since my trip to London has ended up being very low demand. I’ve mainly just slept and watched tv on my laptop. It’s not felt great, but I suppose I just needed the downtime. I’ve avoided all my household tasks, including ordering in food a few times. It’s so useful to be able to understand these periods in the framework of demand capacity and anxiety.

    I definitely experience the mood fluctuation component of PDA, on top of my bipolar mood swings, and trauma related emotional flashbacks. PDA seems to mean that if I feel lonely, it’s extremely lonely, down is extremely down, excited is extremely excited. I don’t seem to do ‘small’ emotions. Recently I’ve been more mindful of those swings, noticing when they come to an end and when they shift. It’s helping me notice that the bad times aren’t permanent, and that it’s all cyclical. I seem to swing between productive, energised times with more demand capacity… and low energy, low mood times where I easily feel overwhelmed with lots of demand anxiety. It’s something that my previous bipolar medication, sodium valproate, really flattened and looking back I can see how zombified I was on that med – it doesn’t feel surprising that I pulled myself off of it really. Risperidone seems like a much better med for preventing psychotic mania, whilst not preventing my natural emotions.

    Sometimes “excessive mood swings” are really difficult to cope with, especially the ways low moods feel so very low. It’s infinitely preferable to experience them though, than to be completely flat.

  • An Adventure!

    I’m seeing a favourite band tonight, at a venue in London. It’s been a hell of a day to reach the hotel – train to Ingatestone, coach to Newbury Park, then tube to Liverpool Street. A big unexpected change from a train directly to Liverpool Street.. and I have to navigate it all again tomorrow.

    I was very fortunate in that I got chatting to a lady who was on her way to meet her Autistic son, so she kept me company, and kept me calm through the uncertain middle portion of the journey. She told me about travel with assistance, which I think I will book for the return journey – I’m very much wishing I had decided to bring my sunflower lanyard. I thought I didn’t need it, because I expected a straightforward set of journeys which I feel comfortable with. I won’t make that mistake again. I did at least bring a stick, to help my fused spine* cope with so much walking and standing.

    From Liverpool Street I travelled to South Kensington, to visit the National History Museum. The train, coach and tube had all been full to the brim, and the museum was no different. I’d visit again, but not on the first day of February half term! (I’d also plan to be carrying less). Despite that, it was cool to see some fossils. Absolutely had to visit the dinosaur section first, to honour my childhood special interest. I then went on the mammals section, and saw the marine fossils. The scale is unbelievable.

    I used my ear defenders that a patient on the psych ward got me when she realised I was Autistic. That, coupled with the walking stick works pretty well to signal that you’re disabled, which tends to mean that any railway staff, or hotel staff take a gentle, calm approach. I also got offered a ground floor room, which reduces the walking after standing all night at the concert so I was very grateful.

    I’m glad that I have enough experience with London and travelling to be able to take on this type of trip on my own. The unexpected change was very anxiety provoking, but I checked the details of the changes, followed the crowd and found someone to help, and so, I coped. Possibly a sunflower lanyard would have enabled me to ask for extra support from the railway staff, and I definitely want to try it next time I make a similar journey.

    *I was diagnosed with infantile scoliosis at age 3, and had a spinal fusion to correct a 50 degree curvature in my thoracolumbar spine at age 20.

  • Impatience

    I’m feeling a sense of diffuse impatience tonight. There’s nothing specifically I’m impatient for, which is a bit strange. It’s a general eagerness to start making progress on my goals. To start gaining research experience, to start making progress in working to better the lives of my fellow AuDHDers, PDAers, and wider neurodivergents. To get involved in Mad Pride campaigning. To find how I can support the lives of people who are more permanently non-speaking than I was.

    There’s a million and one dreams, hopes, ambitions and desires bubbling inside of me. It’s just knowing how to enact them in a real sense – and knowing that I have my limits and can only achieve so much. I need to work out what I’m best suited to, where my efforts will be most effective. I need to find out what opportunities there are for ‘making a difference’, or what opportunities I can create.

    It’s the effort of years and I am only just at the beginning. ADHD has always made me a very impatient person, and the days where there’s no progress to be made, that you just have to live through are always very frustrating to me. It’s so hard to not feel that they are a waste of time, even though during them I can make progress on the living skills that will support me through all the upcoming years of work. The fundamentals are not interesting, and my brain wants to skip over them to the good part. Basic skills like money management (fundamental if you want to start your own business, which is something about which I have little seedlings of ideas growing). Or the self-care that might help me look after myself and avoid burnout (or recover from it). None of that can afford to be neglected, even if it isn’t sexy.

  • Non-speaking, briefly

    Something I haven’t mentioned here is that during my stay in a psychiatric ward in 2021-22, I had a brief experience of being non-speaking. I was very manic at the time, and my mind was super busy, so I’m not even sure I was always fully aware that I wasn’t actually saying anything. I do remember pointing to make decisions on what to eat in the dining room though.

    Something that stands out is being told ‘you’re a really good speaker’ by two people when I slowly started to talk again. In general.. lots of people treated me like I had intellectual disability because I wasn’t speaking. One lady did buy me ear defenders, as recommended by her autistic kid… but also a peppa pig colouring book. It definitely feels like most people assumed I was childlike in that phase of my stay. Something else that stands out is my psychiatrist saying the period where I wasn’t talking was ‘scary’, which is hard to know how to interpret.

    I’ve been told that this is likely a form of situational mutism (by L, who previously worked as a speech and language therapist, and also my therapist). L suggested that probably speaking became too great a demand for me, which makes a lot of sense. I have definitely thought about how speaking is a huge demand since this experience, and one that doesn’t feel possible to avoid… but also a degree of tempting to avoid, just sometimes.

  • The intersection of trauma, ADHD and autism

    For many years, the main intrusive traumatic stress symptom I had was rumination. Turns out, an ADHD mind can hyperfocus on trauma, as pointed out by my therapist. My brain will hyperfocus for months, if not years on end on the events and meaning of my trauma – because autistic brains look for the why, and the reason. Unlike allistic brains, finding an explanation really helps autistic people let something be and understand something. Most therapists have said ‘what’s the point, what does the ‘why’ change?’, my current therapist understands that it’s different for autistics.

    It’s not a good thing to hyperfocus on trauma. It becomes the only thing I can think and talk about, which overwhelms the people around me. It’s prevented me from studying properly, and is the main reason I couldn’t study at university. It becomes very literally all consuming.

    Thankfully, understanding my ADHD and PDA helps – it’s the rhyme and reason as to why adults in my life became so forceful and abusive. It’s absolutely not an excuse, but it is an explanation. That alone means my brain has far less to puzzle out and want to make sense of.

  • Lived experience work

    I’ve been recently looking at opportunities to get involved in lived experience work, especially research. This started after I learnt that the Survivor Researcher Network were offering survivor research mentoring, as advertised in NSUN’s email bulletin (worth subscribing to if you have an interest in the world of mental health). The term ‘survivor’ in the names of both organisation refers to the concept of psychiatric survivorship. The mentors recommended looking into lived experience panels, which I googled and found Healthwatch Essex, who offer trauma and research ambassador positions (among others).

    Something I’m particularly excited about is plans for the trauma ambassador group to look at a scheme for the trauma of autistic and learning disabled people who end up stuck in psychiatric wards due to challenging behaviour, but often without a treatable mental illness:

    I need to put some real thought into what we could do that would meaningfully address this. I don’t want us to offer something to ameliorate the situation, which then gets viewed as having dealt with the situation – the only answer to these people’s ongoing trauma is discharge to a more suitable location. I’d like to either do some campaigning, or something for survivors of this situation, to help them with their traumatic stress.

  • Neurodiversity is Not the medical model!

    I just left a ‘neurodiversity’ research webinar because it was the co-opted, medical model version of neurodiversity, where apparently there’s debate what counts as neurodivergence.

    There is no debate. The term has a definition: any brain that diverges from typical. Mental illness. Acquired brain injury. Neurodevelopmental. Etc.

    It’s deliberately a non-pathologising term for those differences, which means you can’t use neurodiverse ‘disorder’ or ‘condition’ as phrasing.

    This really winds me up, and is everything I don’t want to be as a researcher, activist, or neurodivergent person.

  • Neurokindred

    Something I really feel the lack of now I know more about my neurodivergences is the presence of neurokin in my life. When it comes to the bipolar, I have my neurokin there, one friend with bipolar, another with schizoaffective (and another with schizophrenia), and this feels so good. It’s good to have people who understand being hospitalised, or being psychotic and experiencing delusions. It’s also good that one of those friends is also autistic and ADHD, so I’m not completely alone.

    I’m going to an ADHD support group tomorrow night, so hopefully I will meet some more neurokin there. I also joined an online autism peer support group, which was a great experience earlier this month. I will blog about both of these in the near future.

    What feels particularly lacking is PDA neurokin. We’re not the most common of people, and often we like to interact online. Dannii at PDAourway often refers to her neurokin friends and it always induces a pang of longing for me.. to have numerous friends who are true neurokin, in being PDA and ADHD. It’d be good to have people in my life who truly understood the PDA experience, rather than who were learning about it.

  • Pomodoro stream

    Found another little thing that helped today, probably more so with ADHD avoidance and motivation issues than PDA. I think if my demand anxiety had been high, this wouldn’t have been so successful. I found a streamer on twitch doing pomodoros of 50 minutes followed by ten minute breaks. That’s longer than I can usually motivate myself to focus on something, but the body doubling effect of working alongside a streamer and her audience really helped.

    It definitely helps too to think of table tops and table legs (credit to Harry Thompson for that metaphor). When it comes to household care tasks, they’re the table leg towards the table top of eventually being considered independent enough to get a cat. I’ve come a long way on that goal, the main thing now is to learn to a. sustain the progress and b. keep on top of care tasks even during periods of blips. I’m no longer needing support sessions to achieve basic tidying care tasks, which I’m really proud of.

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