PDA fae

PDA, ADHD, Bipolar lived experience

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  • Brain says no.

    The current thing my PDA seems to be preventing is exercise. Nothing seems to be helping. Knowing all the good reasons to do so, which is something that usually helps, is just adding to the ‘have to’.

    I don’t know if something like role play might help. It feels like it’d be good if I could find an equivalent to ‘tidy just one thing’, like something very small and simple. I’m not sure what that would be though when it comes to physical activity.

    It really doesn’t help that exercise is just not something that’s very intrinsically motivating to me. I don’t find it particularly enjoyable for the process of it, it’d be all about the results. So it becomes a ‘want to want’ and PDA doesn’t vibe with ‘want to wants’.

    If I weighed less, walking would be easier and thus more motivating. I definitely enjoyed my regular mile or longer walks when I was manic. Unfortunately, with the weight gain from medications, standing and long walks are now painful on my fused spine. So something like brief exercise routines would be easier in that respect but not in terms of intrinsic motivation.

    I wish I had a good answer to the internal ‘No!’ to the idea of exercise, but I really don’t.

  • Inside our autistic minds

    I’d avoided watching this. Partly from all the discussion about it, and from someone asking me if I’d watched it… so of course that expectation was paralysing. Mainly though, because of fear of a mainstream documentary just being shit.

    It wasn’t.

    It really, really wasn’t.

    Flo’s video to her mum had me in tears. I’ve asked my mum to watch it, because of that scene (well, the whole thing).. that scene felt like everything I’d say to my mum if I could find the words and courage. I related so hard to everything Flo had experienced and expressed. Being obviously different from a young age, but not knowing why. Knowing you needed to be more like everyone else.

    The sense that who I truly was, was Wrong.

    With PDA and the way it differs from non-PDA autism, for years I felt that autism didn’t even fit. That I definitely felt odd, and different, and struggled socially… but couldn’t possibly be Autistic. I was just Wrong. Not struggling as much as Autistics would, seeming to just be a failing neurotypical. Discovering that PDA explains the space of ‘surface social skills, but still impaired’ was life-changing. Finding that I do have a place in the community of neurodivergents feels like coming home to my own people. My neurokin.

    Not only coming home to my own people, but coming home to myself. My stims. My hyperactivity – and knowing the benefits of expressing it through physical activity. My intense interests. My demand anxiety. My rollercoaster emotional experience. My ability to roleplay. My need for control. Myself.

    It’s so good to know that I am Autistic, and to find content that reflects my experience back to me. Not just this documentary, but all the content on social media. Books written by Autistic people (I recently pre-ordered Untypical by Pete Wharmby and will review it here when it arrives). The play I saw in July last year, Atypical Rainbow.

    But also learning about the experiences of people elsewhere on the spectrum. The documentary also focused on Murray, a non-speaking Autistic man with apraxia. His film made me think of the kids at the school I worked with, and my hopes that they are introduced to spelling to communicate. It made me think of my period of situational mutism, where I too had so many thoughts – I was manic, so many many racing delusional thoughts! There was a lot going on in my internal world that no one had any idea about. Murray expressed himself beautifully and eloquently through his film, clearly an intelligent young man.

    There’s nothing like the magic of neuro-affirming creations by, and interactions with my neurokin. I wish we could all grow up with this from a young age, instead of experiencing behavioural modification, bullying, and abuse forcing us into hiding our true selves.

  • 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.