Tag: neurodiversity

  • Struggles and self care

    Recently I’ve been struggling a little. Not so much with mood, more with anxiety, chronic understimulation (and comparative overstimulation), insomnia, and resulting distress. I am worried that the insomnia in particular will eventually affect my mood. Me and my psychiatrist do have a planned med to add in if my mood does wobble. He’s not a fan of polypharmacy, so is choosing to keep to just lamotrigine for now.

    Why just lamotrigine? Clopixol injections became way too much for me. Partially because I found it more demanding than tablets, partially because travel is making me increasingly anxious. Mainly though, because I have a lot of medical trauma and injections were causing me increasing distress.

    The anxiety is caused largely by my loneliness. I guess I forgot to mention that earlier. I feel, though it’s likely not true, that I struggle more than the average autistic person with making and sustaining connections. This is based on seeing most Autistic people talk about their romantic partner, their handful of close friends, and suchlike. I have none of those. I’ve also met a handful of people recently, and just can not form a bond with them. Maybe it’s six of one, half a dozen of the other (literally, equally our faults). It’s hard not to feel, though, that it’s solely because of everything listed in my autism report that concluded with “another reason El will struggle to make and keep friends”.

    This anxiety centres on the worries that:

    • nothing about this will ever change
    • is it because there is something inherently wrong with me
    • how will I ever enjoy life or find meaning

    Finally, the chronic understimulation of spending all my time alone when I am at home. Additionally, much of my time outside the house is spent alone, aside from around 4 hours at the local community hub. I have a pet theory that this severe understimulation is leading to an intolerance to any level of increased stimulation that occurs, whilst also in itself deteriorating my situation. I am not sure though, certainly I don’t expect there to be any research out there that would confirm that this is a phenomenon.

    So the end result of this is that last night I ended up experiencing a lot of distress. I had spent my sunday in a new way: getting a taxi ride to spend time in the local costa and entertain myself around people. A taxi because there is no bus provision here on Sundays. Very expensive, and not just because of the taxis.

    Overstimulation in comparison to my norm, for one. Also seeing a lot of people in groups, heightened my loneliness. I then tried reaching out to the few internet connections I had, but struggled with feeling to negative. Mainly because people responded in a way that suggested that. I texted a helpline, which vaguely helped.

    In the end, at 10pm I called my mum and she helped me co-regulate. This made the rest of my night awake – yes, the full night till 6am – manageable. Still awful though. I had been awake since 3:30pm the previous day, and had burnt through my ‘try this now to pass time’ capacity. So I spent numerous hours doing nothing but feeling crappy.

    I can see that now as taking much needed low demand time. Not quite “demand free” because my emotions felt demanding. However, it also meant I managed to “sit with” my emotions. I can recognise both of these as self-caring responses. Eventually I felt able to start to do little things to pass the time, and became sleepy at 6am.

    My self-care has continued today. I spent some time with family, and as planned, my mum is here with me now sleeping over the night. I have taken some demand free time. I have tried to move my tiktok feed to a more positive one. I also spent about half an hour simply sitting and playing with my collection of stim toys. I often forget how important stimming is to ADHD and autistic nervous systems. I’ve also spent time journalling.

    So tonight is a lot more bearable, even if I am still awake at the wrong time.

  • Second day of leave

    NOTE: THE CONTENT OF THIS POST IS ALTERED BY A BIPOLAR MOOD EPISODE, AND DIFFERS FROM MY USUAL POSTING STYLE

    Wow, life with bipolar and PDA is hard.

    Life with bipolar, PDA, chronic pain, scoliosis, chiari malformation, probable EDS?

    Yes. Very much a disabled adult here. At the time I was under the RNOH, EDS was considered “zebra” – looking for zebras, when you hear hoofbeats and not thinking “horse”.

    I dislocate far, far too easily. I have congenital scoliosis. I had a brilliant surgery on my spine at 20 years old, and as a result am around 1-3″ taller than I would have ever been (genuinely not sure, people guess my tallest to be around 5’2″, I was 4’11”?) Standing tall as I can, I’m now about 2cm taller than I was – 150cm.

    Dyscalculia, I’d guess that makes my full height 5’1″? Yeah who cares lol. Doesn’t matter – I’m teeeeeny. Suffice to say, I’m 34, and full of disability.

    My honest advice, on this time to talk day, is: ALWAYS keep an eye on mood disorder symptoms in your kids. Do not assume ‘oh this is rejection sensitive dysphoria’, ‘oh this is PDA’ ‘oh this is ADHD’ ‘oh this is teenager time’. All kids are at risk of depression at the very least, all kids are vulnerable to abuse – of any kind, from anyone – and honestly, psych wards are a last resort type of place, for people at risk of SELF-neglect.

    You don’t want your 19 year old in such a place, trust me, let alone your vulnerable 24 year old.

    You definitely don’t want your teenager in a CAMHS unit.

  • 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.

  • Neurodiversity is Not the medical model!

    I just left a ‘neurodiversity’ research webinar because it was the co-opted, medical model version of neurodiversity, where apparently there’s debate what counts as neurodivergence.

    There is no debate. The term has a definition: any brain that diverges from typical. Mental illness. Acquired brain injury. Neurodevelopmental. Etc.

    It’s deliberately a non-pathologising term for those differences, which means you can’t use neurodiverse ‘disorder’ or ‘condition’ as phrasing.

    This really winds me up, and is everything I don’t want to be as a researcher, activist, or neurodivergent person.