PDA fae

Tag: neurodivergence

  • Further thoughts about dyscalculia and dyspraxia

    I think I’m much more severely dyspraxic, than dyscalculic, and it’s the one that frustrates me more. It’s annoying to struggle with basic movements on a day to day basis.

    The main frustration with dyscalculia is that it hampers me studying something like astronomy. I had a major special interest in that as a kid (as well as palaeontology, teaching myself how evolution worked at age 8).

    I’ve always been highly intelligent, described by my tutor at Cardiff University as “gifted” (my one brag in life). So it’s hard to be held back by a specific learning difficulty.

    It is still more frustrating though to be clumsy and struggle with movement. I drop things, knock things over, struggle to style my hair. Stuff that’s so basic for other people, and it really gets me judged. It’s upsetting.

  • Suspected dyspraxia

    As part of my dyscalculia assessment, the assessor screened for dyspraxia. Turns out, as I had thought, it seems very likely I have it, so she’s written a referral for me.

    I really would prefer not to have these struggles. I want to be better at sports and handicrafts. I struggled in tech lessons, with carpentry and sewing machines. I can’t run fast, I’m generally totally unable to compete in sports.

    Sometimes this can be my least favourite part of my neurodevelopmental divergences. People are very judgemental about the results of the struggle as well – they seem to only judge sensory sensitivities as much. They judge when I drop food and make a mess, for example. I’m clutzy and that gets disapproval.

    It’d be really nice if people understood better about dyspraxia, and that my clutziness isn’t just laziness or not trying.

  • Dyscalculia confirmed!

    On the 15th I had an assessment to check whether I’d been right to suspect dyscalculia since my teen years. I had delayed this, due to everyone’s responses that ‘you’re not dyscalculic, you just struggle’ or ‘maths is hard for everyone’ – particularly from women. Internalised sexism, I would imagine.

    People assumed that my ability to do maths would be absolutely nil. I had one person tell me that because I predicted how gears would turn incorrectly, I couldn’t have dyscalculia, because people with that would get that correct. Based on my assessment, I would say that’s wrong, because making an error on clockwise and anti-clockwise would align with the errors picked up on in my report.

    My report notes a weakness in my working memory, number sense, and ineffective retrieval of maths facts. There’s an awful lot of detail in the entire report, but none of it is entirely surprising to me. Mainly it feels really good to have my suspicions confirmed, and that I do know myself best.

  • Second attempt at facebook

    I’ve decided to give having a facebook page a second attempt. I find generating content for Facebook the hardest, for some reason – I’ve never quite pinned down why. I think because it wants longform posts as well, and I’m using all my mental energy creating them for here.

    I’ve thought of a few different things I can try to mix things up and differentiate the three social media platforms. I want to try and foster more community engagement on Facebook, if I can. That’s going to take being as low demand as possible, and having no expectations on the community, and enticing interest. I hope I can get some discussion going, that would be really cool.

    I’d love to be more well known in the area of PDA advocacy – it doesn’t help that I struggle to keep a regular posting schedule. I struggle to generate ideas for content, and focus on posting when I actually have something to say. Trying to brainstorm ideas would make things very demanding for me. Some months I think of a lot to say, other months are more quiet.

    It’s an adventure, let’s see where this goes.

  • 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.

  • “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.

  • Accommodations I use to cope on wards

    Mental health wards are a difficult environment for Autistic people. Autism is not regarded as being part of mental health, so staff, including the psychiatrists even are not specialists in providing care for this. They have some degree of training, especially now there is the Oliver Mcgowan training required by law.

    So to cope on this ward, I’ve instated a lot of my own accommodations:

    • I have my ear defenders, and my loops to cope with noise levels
    • I have orange glasses, to cope with the bright lighting levels
    • I have a large array of stim toys to help me regulate my nervous system
    • I allow myself to hand flap and fidget
    • I have clothing that refers to neurodivergence, to help me self-advocate and show pride in my neurodivergent identity
    • I have a plastic bracelet, which is green on one side and says “talk to me” but can be flipped to a red side that says “not ok” and “leave me be”
    • I engage in conversation and activities to keep myself from experiencing painful boredom that will make me depressed
    • I try to achieve demand free time, when I can
    • I engage in playing board games with staff, to occupy my mind
    • I engage in special interests, even if that’s just reading autism blogs on instagram
    • I read magazines when my concentration is poor when I am recovering from mania, again to help reduce boredom
    • I take melatonin to help correct my sleep pattern
    • I created a laminated flip chart with the support of staff (i.e. I am not allowed to use their laminator myself!) to help quickly explain PDA to staff members

    These accommodations make my stay just a little more bearable for me. They aren’t a complete fix, but coping here would be so much more difficult without the awareness that I am Autistic, and that these things can benefit me.

  • 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.

  • 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.

  • Article in Asylum Magazine

    I’m lucky enough that I’m shortly to be published in Asylum Magazine, a radical mental health publication. I’ve admired the magazine for years, as I align with their values surrounding psychiatric survivorship and amplifying mad people’s voices.

    The article focuses on the ability of identifying a PDA profile to be highly empowering and neuroaffirming. In it I challenge the perception that PDA is a pathologising unnecessary term that shouldn’t be used to describe Autistic experiences. I explain the benefits that diagnosis has had for me, and how it avoids being labelled with more problematic diagnoses such as borderline personality disorder.

    To find the article, if this interests you, find asylum magazine here.