Category: friendship

  • 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.

  • Sports for confidence!

    I’ve signed up for a local scheme called Sports for Confidence. I’m not sure if it’s specific to my county, or nationwide, it might be worth looking out for. In short, it’s a disability specific sports scheme, run by occupational therapists.

    So far I’ve only managed to attend one session. I want to go, it’s great to meet fellow disabled people. I mainly attend the swimming session, or would mainly attend, rather.

    Unfortunately, it can become a demand. The OT expressed strong hopes that I would enjoy the group, that having come once would make it easier to come again. Knowing that the staff really want me to go makes it very demanding for me.

    I do need to be more active and meet more people. I also need OT input in my life (my social worker has referred for mental health OT support as well). Hopefully getting more active might help with my chronic pain from my scoliosis surgery.

    I think what would probably help would be some declarative language around the sessions: I get to go. If I want to, I can attend. The group meets soon, I wonder if I want to go this week.

    Hopefully I can find a way to attend more often, that doesn’t involve simply fawning.

  • Advice for the teens

    Hi, you teeny terror tots

    • learn to accept deadlines as a way to channel your passions
      • whether that’s uni, starting a business, cleanliness, whatever: deadlines are a part of life. Don’t take them too seriously, because the only ultimate one is actual death, but still
    • learn to tidy AND learn to clean
      • Anyway you can, anyway how
      • These are the skills that truly prevent self-neglect
    • I bet you’re a better cook than I am!
      • If not, start out with baking
    • Embrace your own personal form of brilliance
    • Learn to use some form of AAC
      • A big part of PDA is the language aspect, and AAC helps all humans communicate
      • even if it’s just a ‘I’m ok, I’m NOT ok’ wristband – you’ll help all your interpersonal relationships
    • Learn to be ok with your own company, and learn when you’re getting too intense about one specific person
      • No one loves being the focus of a special interest/a favourite person – not even your partner
    • Forge your own paths, please: we’ve all got ways to shine.
    • Also; let’s teach this world the beauty of stimming, eh?
  • Low demand language

    I’m right at my beginning of learning how to use low demand language. I made a mistake with Sally Cat, for which I apologise! Sorry Sally Cat! I have to remember: don’t tell PDAers how to view their situation, they won’t appreciate it!

    My therapist is recommending declarative language:

    • I notice
    • I wonder
    • I get to
    • I have time to
    • I get to take a break from X by doing Y

    These are just little baby steps to changing from the demanding language I grew up with, to the language that will benefit me – and benefit my relationships with fellow PDAers!

  • 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! )

  • A short history of friendship..

    .. as a PDAer.

    Which is to say, lengthy periods with no friends, or very few friends.

    Primary school was a no friend time, except for abusive friends. I nearly made one friend near the end, but trauma caused by the abusive friends caused me to push her away self-protectively. I made a friend who attended my school via dance classes, so she was more a dance friend – she was several years below me, in classic early Autistic childhood friendship.

    Outside of that, I was ostracised and bullied by the entire school of 70 kids (I grew up in a very small village). It was awful, and there’s not much more to be said about that.

    In secondary school, the kids who lived in the town were much more bearable. I made friendships of varying closeness – though none were truly close. I didn’t really see any of them outside of school, except for one. I had people to spend time with in breaks, sit with in class, and that was the extent of most of my highschool friendships.

    College is where friendship started really working for me. A girl approached me at the french taster session for upcoming sixth formers, and then when college started, I talked to her again. I dared to ask if I could come join her group of friends, she agreed and I suddenly had a group of friends! That made college a really fun place to be, with several of us dealing with mental health neurodivergences (and I suspect neurodevelopmental differences as well).

    Unfortunately, I lost all of that group of friends over the course of two separate break ups, that ended up being acrimonious. Trauma, poor mental health, poor childhood modelling of relationships played into that.

    At uni I was back to having very few, not very close friendships for the entire time. Making friends in a massive but impersonal university was impossible for Autistic me. I might have been able to make proper friends from the LGBT society, but never quite managed to. Networking is not a skill that comes naturally to me.

    After uni I had another brief period of no friends. At the end of that period I had housemates for company – but they were not friends. Friends would have called an ambulance for me when I was manic.

    Now I have a very small handful of friends, mainly at my supported housing scheme. I’m very selective about how gets to become and remain a friend, even if it means having fewer or no friends. I deserve friendships that truly meet my needs, and aren’t abusive – and some friendships have ended recently because of this.