PDA fae

Tag: adhd

  • Carer support

    It’s been arranged that I have the support of carers in my new home. This was due to the PDA society insisting that I get a care act assessment to support me in day to day life and I’m really grateful that they stressed this point.

    The assessment was carried out by my community mental health team whilst I was still in hospital. That meant the carers were ready as soon as I moved in. They used the report put together by the occupational therapist at the hospital, but also came to talk to me at my request. That felt really important as a PDAer, to have a chance to give my own input. It helped me feel in control of the situation.

    The carers come four times a week, and help with tasks such as cleaning, hoovering, laundry, food shopping and cooking. Basically, activities of daily living. I can also go for trips such as bowling with them, which I will definitely make use of in the future. I get on well with them, which helps a lot. I also plan to do some baking with them soon, should be super fun.

    I definitely recommend this more than supported housing – there’s a lot more control and autonomy in having support in your own home. Supported housing comes with a lot of expectations of managing everything by yourself in my experience, and to someone else’s standards. In contrast, carers are actually willing to do tasks either with or for, depending on your capacity for the day.

  • 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.

  • Demand free time

    Recently I’ve needed a lot of this. I’ve been dealing with a series of traumaversaries throughout July and August, which has been Very Not Fun, and they obliterated my demand capacity.

    I re-downloaded tiktok, with better knowledge of how to curate a better feed for myself than when I first started with the app back in 2022. It’s now a lot of Autism/ADHD/Trauma recovery content with the occasional pet content (usually cats), and sometimes cleaning/cooking videos. It now feels replenishing to spend a number of hours browsing those videos.

    I find tiktok an ideal way to have demand free time that isn’t ‘understimulating’. Sometimes demand free time does need to be time spent just sitting, maybe with music on, and that can be replenishing in a shorter amount of time. But my ADHD finds that very difficult.. or sometimes there is just a very large amount of demand free time required. In those moments, social media becomes the perfect activity. I can engage in multiple special interests, without being required to expend very much effort at all.

    Of all the things that learning about PDA taught me, demand free time was the most useful, life changing concept I learnt of. I can finally recuperate from life properly, and much much faster. It helps me stave off (and when needed start to recover from) burnout. I now know it is a vital need to empty my demand cup.

  • Food..

    .. is hard. Demands, sensory aspects, executive function, these combine to make food a complete nightmare for me.

    So it definitely doesn’t help when I start losing my appetite again. Might be to do with reducing my risperidone. Might also be to do with staff nagging me too much about how I’m going to lose weight – I do not need extra demands around food or exercise because then neither will happen.

    For now I’m aiming for low spoons nutrition. Smoothies, cereal, microwaved baked beans, protein from the freezer, lots of potato, meals that just need putting in the microwave or oven (and nothing else), and multi-vit water. The highest spoons food I have is apples, which I need to cut up to eat because biting into them makes my gums unhappy.

    Hopefully I can settle into a good rhythm, eating like this, that can sustain me. Smoothies are definitely a low demand, low effort way to get a little more fruit and veg than I was previously.. and the more fruit, veg, carbs and protein I eat, the less processed food I should need to snack on to feel full.

  • Update

    Seems like it’s approaching time to try and step things up a gear.. I’m ranking much higher on the local housing register bidding system. I’d like staff to think I’m ready to move on when I get offered a place, so I need to start meeting all the criteria on the flat inspections each month.

    Which, is of course, a demand I’m placing on myself. It’s a necessary demand, with a good reason, which helps.

    I think I will need to offer myself patience as I try to make progress on this. I’ve gotten into a rhythm with tidying regularly, and usually hoovering as well. Now it’s mainly cleaning tasks left, and getting into a rhythm with those.

    I’ve been using https://finchcare.com/ to give me reminders for these care task. I’ve set them up so it’s broken down into individual elements, so there’s ‘bathroom sink’ cleaning day, and ‘toilet’ cleaning day. Never having to tackle too much really helps.

    I’m holding out hope that the Autism Support Worker referral turns into something useful – someone who can help me plan food that meets sensory and nutritional needs would be a big help.

    For today, I’ve cooked vegetables with my meal, hoovered and just given the bath a clean, so that is something.

  • The problem with ‘strategies’..

    for me, at least.. is I need a strategy for remembering that they exist so I can use them!

    I had needed to hoover for a few days, but felt so worn out that I avoided it for about a week. Remembering the approach of setting a five minute alarm made it feel possible – just having to do that small amount and no more. Turns out, that was pretty much all the time I needed to get it all done, so I do wish I’d remembered that one a lot sooner.

    Mostly though, I’m just glad it’s done.

  • Going back to university

    Yesterday I applied for my student finance and disabled students allowance, so it’s real now. I’m definitely planning on returning to university level study – though it might depend on the outcome of my student loan application given I’ve previously studied and received an overpayment. Hoping that works out in my favour!

    It’s exciting, but also very nervewracking.

    What if it wasn’t the fault of mental health, trauma, undiagnosed neurotypes… but just me not being good enough?

    Am I certain, if it was those things, that they won’t cause exactly the same problems again?

    Am I 100% sure I’m thrilled about the world of deadlines, assessments, assignments, citations, references, essays?

    I’m excited to learn new things, I’m excited to have a second chance to achieve a degree. I’m excited for distance learning at a more supportive university. I’m excited for the sense of purpose.

    I’m really hoping that having a better understanding of myself will provide me with better ways to address the challenges I will face. I know I’m going to have to frame studying as something I want to do, not something I have to do – as a goal on the path to living within my PDA flow. I’m also aware now that my brain thrives on novelty, not routine, so finding ways to mix up my studying should help. Equally, I could try role playing an academic, because that might help lessen the felt demands of studying.

    I’m going to be able to get accommodations for a more complete amount of my disabilities now. I especially predict that helping with ADHD, as PDA isn’t as well known or a recognised diagnosis in itself. My hope is that because my diagnostic report specifies PDA that those supporting me will have an awareness and a willingness to be flexible in their approach.

    The only aspects that aren’t covered is my complex trauma history, which can in itself be disabled when I am triggered, and re-experiencing, and potential dyscalculia. I think eventually I will have to seek a private diagnosis for both, likely starting with the dyscalculia as this will affect science modules (especially as I’m going to have to take a biology and chemistry module! Not looking forward to that – but credit requirements and prerequisities makes it necessary).

  • PDAer frustrations

    Note: In the following post, I am speaking only for myself, and to my own experiences. AuDHDers may have their own experiences of AuDHD, ADHDers may again have experiences that differ from what I describe below. This is valid.

    As an adult PDAer in mental health and trauma recovery, attempting to learn the life skills that allow for functioning:

    Sometimes I really really wish I “just” had ADHD. Or even AuDHD. But not this PDA stuff.

    Not because I think ADHD/AuDHD is challenge free, or easy, or whatever.

    But because the strategies/approaches/tools/whatever you want to call them, to address the challenges that things like poor executive function, or time blindness, or even Autistic inertia cause are:

    • a lot easier to find out in the world, pre-created for you
    • a lot easier to think of for myself
    • would be a lot easier to apply without PDA, because there’s a way in which the expectation to apply the tools is a demand even as whilst it’s a desired thing
    • generally seem more reliably effective than PDA tools.

    For example, breaking down tidying into “5 things: rubbish, dishes, laundry, things with a home and things without a home” always answers the struggle of looking at a messy room and knowing what to do with it. It won’t solve any other issue (task initiation, demands, inertia etc), but that tool is a complete solve to that specific ADHD problem for me.

    Or, visual timers solve issues with estimating how long something will take, knowing how I have left to do something or how long I have to do a task for.

    Whereas managing demands, and demand capacity, is an ebb and a flow of things that works sometimes. And fail spectacularly at other times.

    If my emotion cup is empty enough. If my bodily needs are met well enough. If I’ve been able to avoid something for long enough that the sense of pressure and expectation has decreased – because I *haven’t* had to do it, I’ve been not doing it! If I have enough tools to change up how I approach tasks, to provide novelty often enough. If my mental heath is stable enough. If I am experiencing enough autonomy. Etc etc.

    I might have the demand capacity to do the thing.

    There’s no one tool for ‘having demand capacity’. It’s a whole life approach, to have that capacity just enough of the time. PDA can be very disabling, because life is inherently demanding of adults. (In children, life lacks autonomy, and this is often a bigger problem).

    And on top of that, ADHD and AuDHD are a lot easier for outside people to understand than PDA. They’re an awful lot more logical than demand anxiety is. (Or the pathological need to avoid demands, because PDAers do not agree on what underlies the avoidance – for me it seems to be demand anxiety.) That makes it hard for other people to know how to help, or worse still, feel interested in learning what helps. And worse than that, attempting to help without understanding PDA, in my experience, involves being demanding!

    So being a PDAer is… frustrating, at times, and more so than the other aspects of my neurodevelopmental differences. (It’s not more frustrating than my bipolar, which I count as one of my neurodivergences. That one is just a problem, and one I would absolutely choose not to experience.)

  • 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).