PDA fae

Category: lived experience

  • The demand of wanting to

    As mentioned on pdafae on instagram, I really want to read my Baye’s Theorem book. During the course of my psychosis, I started developing a special interest in perception. I think through the muddling nature of illness, I was reflecting on my past studies and realising that perception was the area I find most fascinating in psychology.

    It’s lasted since I’ve regained touch with reality. A patient was kind enough to purchase me my uni’s perception textbook to cheer me up, and I’ve read most of – that too has become slightly a demand to finish. Baye’s theorem is very relevant to perception, particularly autism and perception as I’ve mentioned before.

    It would do me good to engage in a special interest, but because it is a special interest that I’m really interested by, my PDA is responding to that with a lot of avoidance. I suppose there’s a big sense of “should” and “want”, and I need to find a way to relieve that.

    Something that might work is to just allow myself to ignore it for long enough, because that tends to remind me that I don’t have to engage with something.

    Alternatively, I could try just reading small amounts? I think I need to find a way to be in my flow. I’m really eager to study the signals and perception module at the OU, and that might be because it’s possible it’ll be difficult for me to do so – whereas the books are readily available. Possibly therefore, putting them accessible but out of sight might also help, because it may be that seeing them regularly is increasing the demands.

  • Fawning as necessary, and moral

    It’s very hard not to feel that avoidance makes me a bad person, naughty, non-compliant, defiant, bad.

    People in authority, with jobs to do, people who might get in trouble for allowing the avoidance put so much emotional pressure on. Everyone has something they’re willing to be coercive over, in my experience.

    It feels, very strongly, that the only means of being safe in this world is to fawn. To comply, and dissociate from the demand anxiety this causes, even if this is at psychological cost to myself. It feels, therefore, that a PDA existence can not be a trauma free existence – because the process of doing this is traumatic in itself.

    It’s awful. I hate this.

  • Rebuttal to article in The Times, 1.3.24

    I’m really upset by the article in The Times today headlined “self diagnosis of ADHD and autism ‘risks overwhelming health system’”. It claims that self-identification of these neurodivergences “risks… harming those who need the most help”.

    I fully disagree with this. Everyone with these neurodivergences is deserving of help and understanding themselves. Diagnosis is a privilege that not everyone has access to, and self-identification of an identity is valid – we should not be prevented from understanding our differences from the neuromajority. I also fail to see how, and the article does not articulate why self-diagnosis would lead to harms for those who are “less articulate or non-verbal”. Yes, people in these groups deserve support and diagnosis but this does not detract from the issues faced by those with supposedly less ‘severe’ traits – noting that, there is no severity levels of autism, we’re all equally Autistic. We just have varying needs of support.

    I feel that by people being more aware and able to understand themselves, we can leverage pressure to change society to work better for us. We can work as a group to create services that meet our needs, and advocate for ourselves as a minority group. It’s unfortunate that there persist to be those who argue that these neurodivergences need to be seen as medical conditions based around deficit. We have a fight on our hands to get Autistic and neurodivergent culture recognised as legitimate and valid, but I have faith that with time we will reach this goal.

  • My second chance.

    Metanoia pays off, it seems.

    That’s a word I’ve used here before: the idea of profound lasting positive change after a breakdown, esp. psychotic breakdown.

    I’ve just been approved for a student loan to return to university! I had worried due to previous study and overpayments I wouldn’t be, so things had been uncertain and stressful. It’s so good to have the certainty about what I will be doing come October 7th.

    It will be the Open Degree at the Open University, which in short refers to multidisciplinary study – lots of all the sciences for me, social and life/physical. Lots of modules on mental health, autism and ADHD, biology, sociology. It’s so exactly my area of interest – this is what I did my A levels in, bio, sociology and psych and I loved those.

    2021’s psychotic breakdown really did lead to massive change for me. I got the actual care I needed from it, and rescued from stagnation where I didn’t feel competent to try anything. I also didn’t know what my goal, or aim was. It had been clinical psychology, and I lost that. Lost interest in it as well.

    I didn’t have anything to replace it though, till I added the world of neurodevelopmental difference to my knowledge of neurodivergence (including mental ill health in that). Until I reframed everything as ‘neurodiversity’ and ‘examples of neurodivergence’ – that was a real paradigm shift. I also learnt how vital lived experience is and the power it holds, from working with my lived experience practictioner. But also from the wealth of lived experience shared on social media.

    That gave me a drive to pursue after I started recovering. A HCA on the first ward that year said logically SFE should provide funding, otherwise they make no return on their investment in me. That provided the spark to reconsider university study, the hope it might be possible.

    Sometimes living alone is lonely, but it provides me with the space I need to study without others around me. I have good meds, I have new diagnoses, I can get new accommodations. I understand myself better and what works for me. I have trauma therapy finally. The OU puts out so much needed and helpful guidance on how to study, and the level one modules are a gentle start. I get to study slowly.

    Things should be much better this time, so I am very, very excited for my second chance.

  • A Kind Of Spark

    This is a couple of days late, but I was lucky enough to catch the BBC interview of the author of A Kind of Spark, and the three lead actors from the series.

    If you haven’t heard of this yet, it’s an Autistic series. The author, Ellie McNicoll is #ActuallyAutistic, as were the three actors playing the lead characters. It was really quite something to see four women sitting on BBC Breakfast discussing masking, and the difficulties of getting diagnosed as women on the spectrum.

    I’m really looking forward to watching this series, which will be on CBBC and Iplayer for those in the UK.

  • Life is boring..

    .. life feels boring?

    Is life boring?

    It definitely feels it recently. Life has been feeling same-y, repetitive, lacking anything truly pleasurable, or worthwhile.

    I’ve also been sleeping a lot – regular 12+ sleeps, with very low demand capacity, struggling to cook, or want much food.

    Sounds like mild depression to me.

    So maybe life isn’t boring, but depression is making it seem that way. That’s what I’m hoping, because if that’s the case, there’s tangible things I can do about it.

    Though, part of me suspects that it’s also that human society is badly set up.. if you want to get out of the house and do something, what can you do?

    Shop? spend money you don’t have on things you don’t need

    Cafe? Park? Library? Cinema? It’s a limited range of options.

    OR

    There’s go down a pub… and we wonder why drinking is so common in society.

    It’s hard to think what there is to plan to go out and do with my time, that could be some spontaneous fun. I think that’s part of what I’m lacking, something different, out of the ordinary, spur of the moment… but it’s so hard to think what that could look like.

    All the options just feel like another part of the mundanity.

    I don’t know if depression is the reason that mundanity feels so oppressively unbearable, or not. If it’s not, I don’t know what to do about that feeling.

    But working on making sure I’m looking after my mood sounds like a place to start, and nothing has to be fixed all at once. It’s a journey… and yesteday (I write this at 3am), getting some sunshine, spending time with friends … and making plans with a local healthwatch* to do work around Autistic and learning disabled people stuck in prisons and ATUs was definitely a step along that journey. Definitely feels like a bigger step than the previous day which was made up of lonely sleeping and dozing (that horrible half asleep state where you want to just pop downstairs and see people you no longer live with). But I try to remember the value of rest, and perhaps that day of doziness was just as important and restorative – and prepared me for the day I had yesterday.

    *If you’re in the UK, you can find your local healthwatch here.

  • Untypical, by Pete Wharmby

    When I was discovering my neurodevelopmental differences (I don’t say neurodivergences, as I include bipolar in that, which I already know about), I started processing all the trauma that was associated with them. It left me with the feeling that neurotypical society was deeply hostile towards neurodivergents, particularly Autistics.

    So I knew I wanted to read the recent release based on the tagline alone: “How the world isn’t built for Autistic people, and what we should all do about it”. It promised acknowledgement and validation, and that’s exactly what the book delivers. It also offered a sense of hope, that there’s things that can be done, that this hostility isn’t unavoidable.

    My brain isn’t braining very well recently, so it’s hard to find the words to express everything I feel about this book, but I heartily recommend it!

  • 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.