PDA fae

Category: neurodivergence

  • Brainspotting…

    …works wonders!

    I’ve been working with an Autistic/ADHD/Dyspraxic/Dyslexic therapist recently, who has a PDA kid on trauma therapy. The modality she uses with PDAers is brainspotting, which is a variant on EMDR. Personally I think it could be called ESDR or EFDR, eye stillness/fixation de-sensitisation and reprocessing therapy. It works on bilateral stimulation, focusing on bodily sensation and rating it (which makes it a somatic therapy) – I tend to picture my bodily sensations as colours – and eye fixations. During this, you think about or visualise either a positive resource, or your trauma, either increasing or decreasing the feeling respectively.

    Tbis therapy (along with lamotrigine) has helped my life hugely. I have a lot more faith in the universe, and feel more comfortable with spirituality. I will post more about this shortly. I feel able to experience enjoyment, and trust in myself. I feel better able to self-advocate, have better self esteem, and better internal communication.

    I won’t say ‘I recommend this’, all I can say is how much this has helped me. It’s really starting to turn my life around. I finally feel like there was a point to surviving.

  • Moving demand anxiety

    Recently I’ve experienced so much demand anxiety about moving, that I’ve mostly been sleeping and hiding.

    There’s been so much to do and arrange – carpets, paint, electricals, electric, gas and water, television license, and internet. It’s been so stressful. It’s a little better now some of it’s getting sorted, I’m finally managing to feel a little excitement.

    I’m very lucky, it’s a great flat, with a lot of storage. It’s going to be so good to get away from the restrictive environment of the ward, and away from some of the repetitive conversation with ill patients. There’s a nice communal garden, and a little yard outside my flat where I can grow some plants if I wish.

    I just wish that moving didn’t come with so many intense demands. It’s really quite a lot to take on, but it’s going to be worth it to no longer be living in supported housing.

  • PDA comedy night!

    Hopefully a few laughs was the tag line – and well, more than a few occurred! I had a great time at this event last night, never thought I’d see Katherine Ryan and Nish Kumar, let alone for a PDA fundraiser.

    Everyone was really great, absolutely hilarious. Ed and Asha (?) gave a really moving introduction speech highlighting the importance of PDAers receiving needed support – Asha in particular did great!

    The highlight of my evening though, was getting a chance to talk to Ed, and be invited to take part in some participatory research. I adore the PDA society, they fight for us with the energy of a thousand suns, and I’m behind everything they stand for.

    At the beginning of the night, an amazing £21k had been raised, funding three months of their helpline – which has provided me with invaluable support repeatedly since 2021, including securing me an assessment when communication broke down with Dr Gloria Dura Vila’s team during an mania.

    A brilliant start to my birthday month!

  • “what would I freely choose to do now?”

    I experienced a lot of demand anxiety today. I had been very disconnected from my demand anxiety after the stress of nearly entering supporting accommodation, and the results of that – which were very serious and quite triggering, so I will not be detailing that here.

    I was sat in the library, around other people, which in itself helped me enter ‘doing things mode’. Watching others apply themselves seems to help switch me into that mode, much like wearing shoes and proper day clothes is known to help some PDAers. Initially I journalled after thinking ‘I have the freedom to write whatever I choose’ – a similar approach to that taken by Dr Gloria Dura Vila in my assessment.

    I then thought of the question in the title, and started brainstorming anything I’d choose to do if it were possible. My first answer was ‘run away to the arctic’ which wasn’t acheiveable, but did make me feel better. As I wrote more, I generated thoughts that I could act on, such as create a research plan, and write a short story.

    I think this will be really good for times when I’m very bored, but my brain is saying ‘No!’ to everything, or days like today, where I really want to be doing, but everything feels very anxiety inducing. Something about starting with the impossible, and then teasing out the possible really helps, and focusing on free choice is key.

  • 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.

  • PDA lies in the accommodations needed

    Sometimes, even now with an official diagnosis, keeping this blog and my instagram, having connected with the PDA community…

    … I still sometimes doubt that I’m PDA.

    Sometimes I have quite a lot of demand capacity, and these times can last for long durations – days/weeks.

    In these times, I feel little demand anxiety. I am able to meet requests. I am unbothered, or much less noticeably bothered by the expectations of others foisted onto me.

    I can offer to do things, that I could easily avoid.

    I can meet my own expectations for myself, and my bodily needs.

    In these times, it feels unlikely that I truly have PDA.

    However, in these times, my demand cup is being emptied by something.

    It might be someone else’s support. Or getting good sleep. Or having had a restful enough period, or enough demand free time, or a reduction in anxiety. Or I am spending enough time engaging in special interests (this is my recent situation – I have been reading a lot about queerness, perception, baye’s theorem, spending a lot of time on instagram reading about autism and ADHD).

    The fact that I need these things to cope with expectations and demands is part of PDA itself.

  • Magickal evening

    This is officially the best ward I’ve ever been on.

    I got granted, along with another more well patient, the chance to go outside late at night – much later than we are usually allowed outside – to view the northern lights.

    Unfortunately, afaik, my phone was unable to pick up on the lights due to it’s make – but I saw the faint, very subtle red and grey swirls, stripes, flickers, and whorls. That’s a lot more meaningful to me – google and TV are full of the vibrant images that cameras pick up.

    I’ve wanted to see the Aurora Borealis since I was a little kid. As I’ve mentioned before on my blog, His Dark Materials pulled me through a lot of trauma as an 8 year old. I really related to Lyra – who displays strong PDA characteristics to my mind! – and the help she was provided by caring adults when that was lacking for me really helped me cope.

    So seeing them today, in the south of England, really made me very emotional. I’d thought I’d have to go on an expensive holiday and might never get to see them, and tonight changed all that!

    The moon was glowing down as a crescent, perhaps there was some magick afoot.

    Photo by Tobias Bjørkli on Pexels.com

  • Externalising PDA

    I had thought for a long time after learning of my PDA neurotype that I was definitely an internalising PDAer, or at most a mixed PDAer who mostly internalised.

    I was wrong. That’s my response to trauma. I learnt to fawn, i.e. comply, to retain control of situation through maintaining safety. That was the only acceptable response as a child and teenager, no matter how much that went against my true nature. It caused an awful lot of dissociation, especially as I got older, and disconnection from my body and emotions. I dissociate less now that I have acknowledged my experience of demand anxiety, but I still struggle to name sensations in my body, which makes the process of therapy rather difficult, as brain spotting relies on doing this to work. I am slowly learning to be able to pay attention to my bodily experience, but probably still spend the majority of the time disconnected. I live in my head, rationalising everything to cope.

    I’ve realised during this hospital stay that my unmasked, authentic self is very externalising. It makes me wish I had been in the early cohort of identified PDAers, that perhaps that would have lead to some understanding – but perhaps that early the successful approaches for PDA children had not been developed?

    I can see now how my externalising lead to the responses that I got from adults. There’s no excuse for how I was treated, all children deserve safety, but I can see how things unfolded. My mum says I was always quick to escalate to meltdown, and adults were determined to take any action possible to prevent that, with very unfortunate consequences. At a young age, I was likely very vocal about my autonomous wishes, and had adults who strongly believed that adults were to be obeyed, not challenged, which was not the ideal environment for me.

    I want to find a way to be my externalising self, authentically, without escalation to meltdowns. I definitely need a low demand lifestyle, so I am very glad not to be heading to supported accommodation, because I have come to the opinion that “low demand” is not possible in that setting (especially not mental health related supported housing, which does not understand anything about autism, let alone PDA). I have a lot more faith that in my own place I can create my own rhythms for “activities of daily living”. I would be willing to have the support of a personal assistant, to ensure that flat maintenance does not suffer – hopefully this will be possible.

  • 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.