PDA fae

Author: plumfae

  • Avoiding an ATU as a PDAer

    Ways NHS 111 have supported me:

    The moment I tell them ‘bear with me I’m autistic’ they do know how to alter their communication. If you’re lucky enough to have a diagnosis with a PDA modifier, they actually do have a degree of understanding of what that means.

    They will likely still be quite demanding to call – but if you are facing a dangerous crisis and don’t fancy heading to hospital, try and meet them. They take the “least restrictive option” and as in my case, can treat you in your own home.

    It’s best to lean on friends and family, but if it’s the middle of the night and things have *worsened*, call 111 every time something gets worse. Short of that, SHOUT is textcare, and there are multiple email support lines: saneline, samaritans being just a couple. There’s loads of suicidal crisis lines, papyrus, CALM, samaritans – but these need you to be actively suicidal. You can also contact the PDA Society helpline if you need PDA specific advice – but they are not a crisis line and will respond at a delay. The NAS also have webpages on where to turn in crisis – I would link but the website is currently down.

    Yes! All of this is demanding!

    BUT: all of this is better than any length of time in a psychiatric unit as a PDAer. They are restrictive, demanding beyond belief and very controlling. If you need to be in one, they’ll help – but if you can do any of this and stay at home, you’ll keep your control and autonomy.

  • Neurodivergent distress coping

    I made this christmas tree decoration on a night I was really struggling:

    Now that’s not a brag. It was actually completely the wrong coping mechanism – it lead to my becoming so distressed I toppled my Christmas tree! No damage done, to me or the tree, so nevermind but still. Trees are not playthings!

    So I had to rethink the ways I was trying to cope: too much tv, crafting, distraction.

    What I needed:

    • stimming
    • sensory items like my weighted blanket
    • lava lamp
    • radio music
    • spotify music
    • taking a break from christmas
    • opposite action: opening some of my own presents that I’d bought for myself/one my mum got for me
    • radically accepting
    • a little clock for my kitchen so I could be aware that time is passing
    • engaging in special interests – and strewing them around the room for a low demand way to spark interest

    Using these methods has helped me work better with the home treatment team. With good communication about my being autistic and PDA with them, they did an excellent job of adapting their approach, and I’ve impressed a lot of them.

    You can cope with distress and crisis as a PDAer – you just need to work with your brain and not against it!

  • Friendship gets easier with practice

    Recently I made a post on my instagram about one of my biggest autistic traits is difficulty making, and keeping friends. I’d now state that as biggest PDA trait – but also I’m finding that contact with 111 option 2 is helping me shift my communication, boundaries and locus of control.

    That is to say, I am more aware of what I can control and what I can’t – which really helps with intolerance of uncertainty. It also reduces the anxiety driven need for control.

    I am also better able to stand up for myself but also take responsibility for my own actions, because 111 definitely expect that of you. Once you start doing that, they are very able to work with PDA and autism, actually. They will adapt their communication, and expectations as far as a non-autism specialist service can.

    The outcome of all this is that I am much more selective in who I keep in my life – which makes for friends who actually want to check in on me and see me in person (which as a socially motivated PDAer, I need! )

  • Human needs

    This is an image from my therapists practice (that she comissioned). It shows the 6 types of needs that people have: contact, recognition, incident, sex, stimulus, and structure.

    For me, I find I have a high need for variety, intellectual and interpersonal stimulation (and nervous system stimulation), and an extremely high need for contact.

    Recognition, merely being recognised does not help my loneliness at all. Similarly, incident simply stresses me out.

    Where do you think you might stand?

  • Life planning

    Now I have the meds I need, I can calmly think through life planning as a positive activity.

    To do this, I never use smart goals, they confuse me. Let alone the demands of the requirements they have!

    So instead, I just do very informal notes:

    Learn to drive

    • autonomy
    • need to concentrate
    • need to not dissociate

    I do this via different categories, e.g. bipolar and goals, ADHD and goals. Yours may vary, if you wish to give this a try.

    Following that, I review some time later – probably quite some time later, as in years. I cross off the things that no longer matter, tick off progress, throw away things that have been completely solved. It gives me such a sense of achievement!

  • responsibility update

    Still hitting the mark on responsible (apart from one or two minor wobbles). I saw the section 12 drs and aced it! So now I have all the meds I actually need and I feel calm and sleepy.

    Just managed a basic dinner, so that’s food in me.

    I’m doing pretty good!

  • How I take responsibility through mania

    I have a ten year plan: buy a flat with two bedrooms and adopt a kid (likely allistic, to lower demands on myself! Gotta do what’s right for the kid!)

    So, when I have bipolar 1 with psychosis, obviously that means a LOT of self-responsibility.

    Turns out, I’m capable of that! I’ve been calling 111 every time my mental health noticeably worsens, and aiming to only do so then.

    In between I’ve been brainstorming autism/neurodivergence related means of coping:

    • colouring
    • reading autism books
    • stimming
    • demand free time
    • listening to an audiobook
    • my kindle

    NOT:

    • crafting
    • knitting
    • TV

    They need to be low concentration, high stimulation for my ADHD. This is a very hard balance to find!

    That said, I am doing very very well. I managed to communicate my needs to a local community hub, telling them about the need for an ambulance, and also to a local charity shop I wish to volunteer for. I also emailed for a dyspraxia lived experience role, admitting to my period of illness and hoping it’s brief.

    All in all, I’ve been very successful in looking after myself through a thankfully mild mixed episode. Clopixol is my wonder drug!

  • Trauma struggles

    Been really struggling with trauma the past few days.

    Lots of calls to 111 and a emotional support line they can refer you to. Lots of using “same but different” which can be found on DIS SOS, lots of reality checking, support from my neighbours and mum.

    Lots of friends pulling serious, dangerous bullshit. Won’t go into details, but oh god it’s been a lot. It’s made coping much harder for me.

    Things are very hard right now, and I may not post as much

  • “Radio days”

    This is something I’ve discovered today after putting radio one on in the morning, keeping it on after my mum came to see me, and then returning to the radio when we got back. I’ve actually kept it on into the evening, so it’s been a whole day of radio shows.

    It’s actually very regulating for me. It’s like having background company, which reduces loneliness. It’s also lower demand than tv – you can tune your attention in and out. Pay close attention to the funny chat, let a song be pretty in the background.

    One thing is that sometimes you do have to ignore a song you don’t particularly enjoy. I found the giggles from the commentary made that worthwhile today.

    I think I will try and make time for radio days, much like I do for demand free time. I think they may become equally important for my mental health.

  • Update: struggling a little

    Recently I’ve been very lonely. I don’t see my friends in person very often, nor do I have that many. Where I live is only a small town. All the activities are attended by women in their 50s and 60s.

    My care coordinator said it best when he said ‘there’s nothing to do in X for 30 year olds, unless you like drink or drugs’. Suffice to say, I don’t intend to take up substance abuse to gain social connections!

    I struggled making friends at university in Cardiff. So it feels like if I couldn’t manage whilst surrounded by 30k students my own age, how do I expect to make friends in home counties small town? It leaves me feeling like the problem is me – that there’s something wrong with me.

    This loneliness and low mood has been making food a particular struggle at the moment. It’s feeling far too demanding to decide what meets my sensory needs, shop for it, store it appropriately, prepare it, cook it, eat it and clean up afterwards. I’m tempted to survive of Huel and toast for a while – low spoons food. Nut butter for protein, toast for carbs, Huel for vitamins and minerals. Not the best diet, but better to be consuming something at least, and it would be easiest with my spoon level and sensory needs at present.

    Hopefully things will get easier soon. I am very glad to be spending a Christmas with family, in the community, doing all the usual Christmas things. I missed out in a big way last year, and I have a lot to be thankful for that I’m well (not psychotic) this time around.