PDA fae

Category: adhd

  • 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.

  • 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.

  • OT needs assessment… and no sleep

    It’s not even 4am right now, but tonight I don’t seem to be able to get sleepy. I think it’s because I am starting my occupational therapy needs assessment later today, with a trip to a supermarket, and a cooking exercise.

    I’m nervous.

    I’m nervous because… I feel like I’m handing information to an unknown someone else to make decisions for me, without my input based on how I perform. I’m nervous about getting what I need, but also what I *want* from the decisions they make – more nervous about this actually. I want to be able to say ‘I want XYZ’ and have them find the funding. My OT explained that a lot of people would overestimate their need, and then be handed far too much if it worked like that, which I can understand. Even so, it’s still stressful to wait on someone else’s decision.

    Last time I was in this position I had much more faith in supported housing as an option. The let down of my supported housing, their refusal to work with my PDA profile adequately, however has left me very wary. I’d want autism specific supported housing this time, and I am not sure that exists within my local area. I could be moved to a different area within my county, but then I lose my care co-ordinator, end up under a different CMHT… far too much change and uncertainty. I know my current care co-ordinator is happy to provide my depot by thigh injections for example, which is the only delivery method available that I’m comfortable with. I also don’t want to face the risk of the decision that I don’t need a care co-ordinator because I “seem well” and have supported housing, after a move to a new area – it happened last time, I transferred from one region to another, and the new CMHT deemed me as not needing a community psychiatric nurse to act as a care co-ordinator.

    What I’d ideally like is my own place, under my own autonomous control, with support visiting me. I’d love to train myself a psychiatric service dog, to alert to manic episodes, ground me through delusions, racing thoughts alert to irritability, and rising demand anxiety. Something that might be particularly useful would be grounding through rising states of emotion and panic in response to demand anxiety.

    I am very anxious that the decision makers will deny me access to this, based on a version of me on paper. Or that housing where a dog in training won’t be possible to find. I’m also against the idea of supported housing, as it would very likely not be possible to have a dog/puppy live there whilst training.

    I really hate these situations of waiting in wards for an answer to a housing crisis. There’s pros this time, I’m on a much nicer ward, I have the distraction of starting my university studies, better support from the ward manager/care co-ordinator/psychiatrist/discharge co-ordinator/occupational therapist/nurses to move things forward quicker. I just am not so keen on how things feel so open ended and uncertain in terms of what type of accommodation and support might be decided on as meeting my needs.

  • Demand cup update.

    Making one of these because recently things have changed at my supported housing in a way that may provide me with more demand capability in life.

    In short, I have been offered a ‘quid pro quo’ of I don’t demand too much of them and they will demand much less of me. As in, I just have to keep telling them I’m alive daily, and nothing else.

    That works for me, I can work with that. I like quid pro quo when it’s not corrupt, so yes, if we’re playing this game I’m happy with it. They’ve also asked me to not tell them what ‘PDAers need’ but what ‘I need’ which, sure I can play that game too. They don’t realise that’s a demand, so they’re gonna hear a lot of ‘I need you to understand that’s a demand’ in the near future.

    But what can they say? They demanded it of me. So I’m happy to become the resident broken record of the scheme for them until they learn how to help, well, PDAers.

    Ridiculous I have to do it this way when I have the diagnosis but, fine sure.

  • Having a future, once more

    When I was manic, I declared I’d become a human rights lawyer. This was grandiose, I wouldn’t get through law school. I do have an interest in human rights, and so I’ve been researching alternative careers in the field that don’t require law school.

    It feels so good to have options around my career. In my 20s I was heart set on clinical psychologist (because I wanted to offer people better services than my friends were offered). I dropped out of undergrad, and since then, learnt that you can’t overthrow a system by being the system. So I moved on from that goal. It felt like a loss initially, but it really wasn’t.

    Now I’m looking at working in local autism policy, or autism research, human rights work, or setting up a peer support company.

    times are exciting again, finally .. after 6 years of stagnation after my first manic episode and not being offered any help to regain my functioning,

    I now have supported housing (which is limited, for reasons) and living here and recovering from mania has shifted my mindset into thinking about the future again. This is why I call this period of time a metanoia.

    It’s bloody amazing.

    What helps in all this, is learning about the idea of the PDA flow. This sort of stuff is exactly my PDA flow.. and I’ve been so much more motivated to be functional in life because I know where my flow lies again. Existing disconnected from the flow seems to be a surefire way to be depressed for me. Even when I was manic, I was finding my flow again, and that was a very good thing.

  • 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 new tool

    I’m forever on the hunt for tools to use to make everyday tasks feel more manageable (it’s important to me to learn to become more functional than I have been for a long time).

    A new one that I’ve found is https://llamalife.co/. It’s very visual, which is great for the time-blind ADHD brain. It can help you stay on task with alerts during a task, and encourages focus on one task at a time.

    At the moment, it might simply be helping because it’s novel. Luckily there’s an entirely free version to use, so I’m happy to experiment and find out if it’s just that or if it’s useful beyond being a new toy.

    I do like ticking off tasks, it’s part of why body doubling pomodoros work for me as well. It gives a sense of achievement as you see things become completed.

    I don’t think this tool does much to reduce demands, and could actually increase them through it’s task list. I’d imagine many PDAers would set up a task, and then start work on something completely different (but that still gets things done, and might be a PDA friendly way to use tools like this).

  • 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!

  • 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.

  • Neurokindred

    Something I really feel the lack of now I know more about my neurodivergences is the presence of neurokin in my life. When it comes to the bipolar, I have my neurokin there, one friend with bipolar, another with schizoaffective (and another with schizophrenia), and this feels so good. It’s good to have people who understand being hospitalised, or being psychotic and experiencing delusions. It’s also good that one of those friends is also autistic and ADHD, so I’m not completely alone.

    I’m going to an ADHD support group tomorrow night, so hopefully I will meet some more neurokin there. I also joined an online autism peer support group, which was a great experience earlier this month. I will blog about both of these in the near future.

    What feels particularly lacking is PDA neurokin. We’re not the most common of people, and often we like to interact online. Dannii at PDAourway often refers to her neurokin friends and it always induces a pang of longing for me.. to have numerous friends who are true neurokin, in being PDA and ADHD. It’d be good to have people in my life who truly understood the PDA experience, rather than who were learning about it.