@pathfinder@beige.party avatar

pathfinder

@[email protected]

58 years old, ish (Yes, I'm sticking with this lie, because it still remains my only chance for immortality) Autistic and British. Into philosophy and spiritualism and pretty much anything that might explain the meaning of life, up to and including that it might really be 42.
Male, he/him

#ActuallyAutistic
#Autism
#Neurodiversity

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26pglt , to ActuallyAutistic group
@26pglt@mastodon.au avatar

Interesting reflection on annoyance as a flag for recognising changing norms, & what it can tell us about our threatened privilege.

Feeling mystified by & out of sync with the norms of our culture & exhausted by trying to understand & navigate them is a daily & lifelong experience for those of us who perceive & process information differently. Rather than navigating social spaces effortlessly we labour to identify & articulate social norms, then analyse them in the light of other information & our personal ethics. Sometimes no matter how hard we try we are completely unable to behave as expected.

(How unsurprising it is that so many of us see norms around gender expression as consumerist cosplay scripts that serve the interests of some while demonising the experience of many. And that we cannot bear to work in organisations whose actions do not match their stated aims. Acceptance & defiance can be equally high cost, for us. Hallo .)

An outsider perspective that requires us to identify, articulate & analyse dynamics that are to many folk invisible, can make us, of necessity, excellent social scientists. @actuallyautistic

https://aeon.co/essays/why-does-moral-progress-feel-preachy-and-annoying

pathfinder ,
@pathfinder@beige.party avatar

@26pglt @actuallyautistic
Definitely. Such analysis is something many of us learnt early. It was about the only way that we could learn how to mask even vaguely well.

chevalier26 , to ActuallyAutistic group
@chevalier26@mastodon.social avatar

@actuallyautistic Do y'all know if it's an autistic trait to be super skeptical of stuff? Like, for example, my parents watch some questionable "health" people on YouTube, and when they show me a video from said people, I can tell IMMEDIATELY that they are grifters in it for money. Idk what gives it away but it's like a flashing warning sign in my brain.

I wonder if it has to do with social influence and the effects of charisma/agreeableness that NDs might not fall for.

pathfinder ,
@pathfinder@beige.party avatar

@chevalier26 @actuallyautistic
I think you have to differentiate between our sometimes painful naivety and tendency to trust people and the fact that we tend to be rational information seekers. I suspect we've all been burnt at some point by our willingness to trust when we shouldn't have. But equally, we don't blindly follow someone else's reason and logic without thinking it through for ourselves. It doesn't matter who that person is, or what authority they may represent. It means that with ads it doesn't matter who's reading the script, it's the script we're paying attention to and analysing.

pathfinder ,
@pathfinder@beige.party avatar

@Greenseer @chevalier26 @actuallyautistic
"Seeming Paradox" pretty much sums up so much of our natures. In this case, we tend to be naturally trusting, until we learnt the hard way not to be, but not about information. Information is to be assessed and checked, possibly even deep-dived, it's how we learn.

pathfinder ,
@pathfinder@beige.party avatar

@Greenseer @chevalier26 @actuallyautistic
Exactly. Which is another seeming paradox. Our supposed black and white thinking and yet incredibly nuanced understanding of anything we put our minds to. Because basically, when we look at something, we really look.

pathfinder ,
@pathfinder@beige.party avatar

@Greenseer @chevalier26 @actuallyautistic
Definitely. Like, you're wrong on this, no, no really, just trust me on this, you're wrong. 😂

pathfinder ,
@pathfinder@beige.party avatar

@Greenseer @chevalier26 @actuallyautistic
I'm pretty sure that's one of the constant rules of the universe. But, it does mean that when everyone else holds it, they're wrong 😂

pathfinder ,
@pathfinder@beige.party avatar

@woozle @Greenseer @maggiejk @chevalier26 @actuallyautistic
I've always believed that this should be part of every child's education. Learning how to think, is perhaps the singularly most important skill any child can learn.

pathfinder ,
@pathfinder@beige.party avatar

@Greenseer @chevalier26 @actuallyautistic
Truth! If your answers aren't generating more questions, you're doing something wrong.

niamhgarvey , to ActuallyAutistic group
@niamhgarvey@mastodon.ie avatar

Trying to pack for a with a house full of is its own kind of torture.

Between everyone needing their own ritualised items they can't cope without (eg pillows, random stuff) and everyone interrupting everyone elses train of thought and therefore everyone forgetting what they are on their way to get, and then forgetting what is and isn't packed.

My brain feels as though it is actuslly wobbling on verge of explosion.

@actuallyautistic
@actuallyadhd

pathfinder ,
@pathfinder@beige.party avatar

@niamhgarvey @actuallyautistic @actuallyadhd
Yikes! Always loved a nice relaxing holiday personally, I'm sure I must have had one at some point 😜
Hopefully you'll enjoy it when you get there :bear_hugs:

pathfinder ,
@pathfinder@beige.party avatar

@niamhgarvey @actuallyautistic @actuallyadhd
Generally yes. Although it may also explain why I don't bother going away for holidays anymore.

DoomsdaysCW , to ActuallyAutistic group
@DoomsdaysCW@kolektiva.social avatar

So, it's cool enough that I finally have the urge to put on my zippered hooded sweatshirt again. Part of my involves being comfortable with fabric against my skin -- and not having that (and having to wear short sleeve shirts) has been unbearable. That means it's way too hot for me.
cc: @actuallyautistic

pathfinder ,
@pathfinder@beige.party avatar

@DoomsdaysCW @samhainnight @actuallyautistic
Is the best way. Comfort over everything.

pathfinder ,
@pathfinder@beige.party avatar

@DoomsdaysCW @samhainnight @actuallyautistic
Posts for me are definitely easier too! And thank god for the internet. Without it, I wouldn't even have realised I was autistic in my fifties. Let alone have learnt as much as I have about how to live better and happier.

CynAq , to ActuallyAutistic group
@CynAq@neurodifferent.me avatar

“Go out of your comfort zone to grow as a person and become capable of doing more things”

Translation for my and friends for whom this doesn’t seem to work:

“Get yourself exposed to more uncomfortable situations which the neurotypical brain will automagically become desensitized to”

My brain doesn’t get desensitized to virtually anything. “Go out of your comfort zone” isn’t the helpful encouragement you think it is for me.

@actuallyautistic

pathfinder ,
@pathfinder@beige.party avatar

@CynAq @actuallyautistic
By comfort zones, I'm assuming you mean ability to function and be happy zones. I'm trying to expand that, not leave it.

pathfinder ,
@pathfinder@beige.party avatar

@CynAq @actuallyautistic
Exactly. For so long I beat myself up for seeming to be stuck in a rut, not because I was unhappy, or unfulfilled, but because I thought I should be doing more. But, it was only more by standards and expectations that were never my own. That expected me to do things and try things that I knew were either beyond me, or that I never had any interest in.

yourautisticlife , to ActuallyAutistic group
@yourautisticlife@mast.yourautisticlife.com avatar

@actuallyautistic

Last night, I thought I was going to have two video chats with dating prospects. The chats did not happen, and I don't know why. It could be as simple as a miscommunication.

The anxiety, however, is real. I've been cast aside by so many people for dubious reasons that even when things are going well, I think they are going badly. :holdthepain:

Last night, I had a dream that I was at some sort of event. I was with a group of friends. There was a crowd, and we had to make our way through the crowd.

The group got ahead of me, and eventually lost me. There I was alone in the crowd, with no one wondering where I was.

I don't think it was a coincidence that I had that dream after my two video chats did not happen.

pathfinder ,
@pathfinder@beige.party avatar

@yourautisticlife @actuallyautistic
Familiar :bear_hugs:

AnAutieAtUni , to ActuallyAutistic group
@AnAutieAtUni@beige.party avatar

Unexpected GOOD news ☀️ about health, post-degree studies:

Not sure what has gone ‘right’, but these last 6 days I haven’t noticed many ME/CFS symptoms at all. This comes right after 2-3 weeks of the worst symptoms for literally years, and a long-term decline over the duration of my degree studies (4 years). So this is totally and utterly unexpected.

For the last 6 days, I’ve been planning carefully as usual, pacing (with approx 1 million back up plans 😜), but yesterday was a recent record: did 3 social events, one after another! What the flip?! Normally I’d do one small social event every 3-7 days, but even been avoiding them completely lately due to the massive and lasting impact. There was lots of familiarity with the people, places and events yesterday though, so not tonnes of novelty and all very easy going physically, and all the plans went like clockwork. Also there wasn’t a pressure to ‘perform’, socially, which is key. But, still! Massive, massive difference. I have a big ‘social hangover’ now (autistic side of me never knows what social mistakes I make, terrifying) which prevented me from sleeping properly, but I don’t feel dysregulated (physically) from that like I would be normally, just a bit of ‘normal’ tiredness.

My hypotheses:

  • I usually get sick (ME/CFS) for 2 weeks after the end of every term. This time it was closer to 3 weeks and the worst sickness for a long time. Maybe that extra time resting helped rest more deeply. I cancelled lots of even low-key activities during that time, but perhaps this was key.

  • I had a 6-month gap in my degree studies last year but I did NOT experience this improvement then. So I’m thinking maybe I’ve been released from all that subtle residual stress now my degree is done, and I’m actually feeling good instead of constantly anxious I’ve forgotten some studies. The hormones involved in feeling good may actually be doing more than just making good feelings (hormones always have loads of different roles in our bodies, and rarely, if ever just one!)

  • This one is a long shot: I got a mild respiratory virus last week and only have a runny nose left of it as it’s already gone except for that. I’ve been feeling better since the virus hit and started to lift … it makes so no sense. But ME/CFS has lots of impacts on the immune system (it’s thought to be a post-viral syndrome after all), maybe this virus distracted my immune system, or kicked other systems into gear that are usually offline. Who knows. The timing is odd, though.

—-

Whatever is behind this, I just hope it continues. I’m balancing ‘carpe diem’ to make the most of this precious healthy time with my experience over the last 14-15 years of ME/CFS, that it’s best to keep back up plans to hand at all times. These days feel like a massive gift. 💝

[Edit to add: please don’t advise me that my good health period with ME/CFS may end. I am well aware. Maybe just celebrate someone’s good news? Thank you! 🙏 ]

@actuallyautistic @mecfs

pathfinder ,
@pathfinder@beige.party avatar

@AnAutieAtUni @actuallyautistic @mecfs
The absence of stress is itself a great healer. Glad you're having this time 🎉🎉🎉😊

Susan60 , to ActuallyAutistic group
@Susan60@aus.social avatar

I had an ADHD event this morning. I used to explain these away or blame them on external causes or other people.

If I’d taken my meds when I woke, I would’ve been fine, but I didn’t. I tried to do too much before leaving for my appointment, jumped on the wrong tram, had to call an Uber, then got confused about the meeting point. Rang my skin guy & was able to rejigger appointment, which gave me time for a decaf & a decompress.

My oldest has always been more philosophical than me on these things, better at accepting that it is what it is and then adjusting. I used to be good at doing that when others stuffed up (but maybe less patient with my oldest) but would get very upset about my own occasional dramas, maybe because underneath my externalisation of responsibility, I knew it was me.

But this morning I just accepted I’d stuffed up, did what I had to do & accepted that I might have to rebook the appointment. Fortunately they were able to juggle. The worst part is causing other people inconvenience. I’m acutely aware of that, maybe because of RSD? (Rejection Sensitive Dysphoria)

Uber driver was a lovely Manchurian who has his skin check booked. 😊Currently waiting for anaesthetic to take effect.

@actuallyautistic

pathfinder ,
@pathfinder@beige.party avatar

@Susan60 @actuallyautistic
So often we take our mistakes as being beyond the pale and unforgivable. When simply, they are often just everyday cockups, sometimes with more impact than others. Perfectionism and self-esteem issues can make them far bigger mountains than the mole hills they are to everyone else. So glad this one didn't end up impacting the result and that everything ended up well.

spika , to ActuallyAutistic group
@spika@neurodifferent.me avatar

One of the things I find myself struggling with a lot as an autistic person with an autistic partner is how often there are moments where I do not honor my own needs or preferences because they seemingly conflict with my partner's needs and preferences, and how it feels easier to mask my discomfort than to express a different preference and potentially provoke unnecessary dysregulation and conflict.

On the rare occasion I do speak up and we try things my way and it fails miserably because it isn't his way, I get so disappointed and upset that he's unable to be as flexible as I force myself to be for him and his sensory needs, and wish we'd never tried doing it my way in the first place.

This doesn't exactly feel healthy to me, but I'm not really sure how to interpret what I feel either.

@actuallyautistic

pathfinder ,
@pathfinder@beige.party avatar

@spika @actuallyautistic
I am literally the last person who should answer this. But, as an outsider, it has always struck me that relationships always take two to tango. If you are in a pattern of always being the one to give, then that is difficult to get out of, especially if attempts to do so haven't always worked well. One side always giving isn't always the healthiest, or the most sustainable.

pathfinder , to ActuallyAutistic group
@pathfinder@beige.party avatar

@actuallyautistic

It's day.

Pride, is both a celebration and an affirmation of our existence. It is the latter for me that is all important. As someone who very late in life realised I was autistic, I had spent a lifetime knowing only that I was different, but not how. It was a hole in me that I couldn't fill, a sense of something missing, a lack that always felt more about how broken I was than anything. As a consequence it became something to hide, to mask and to be ashamed of. It was my dirty, dark secret and the core of my existence. The knowledge that no matter what, I was wrong and always would be.

Realising I was autistic, filled that hole. It taught me to see the difference as, if not always positive, at least natural and normal. I was never broken, I was just trying to function in the world in the way that was right for me. A world, that in so many ways, was hostile to that, unforgiving about difference and those who stood out too far. I had, in fact, been simply trying my best with the tools that I had, the tools that came naturally to me, even if no one else ever saw that.

Having a day to remember this. To remember the past and the pain and the blind struggle. To remember how far I've come and how much I've learnt and have yet to learn (because finally I can). To be able to stand out and say "yes, I am", is important not just for us, but others walking this path. For too long being autistic was a dark and terrible secret. For too long its truth has been hidden behind ignorance and misinformation. That is what days like this are for and why they are so important. To show the world that autism and being autistic, is nothing to hide and nothing to fear. Happy pride day everyone.


pathfinder OP ,
@pathfinder@beige.party avatar

@EVDHmn @actuallyautistic
For someone like me, who spent so long in the dark, even knowing there are fellow travellers is a bigger help than many could imagine. Feeling welcomed and encouraged to actually walk beside them, even more so.

pathfinder OP ,
@pathfinder@beige.party avatar

@EVDHmn @actuallyautistic
Until the internet I never had a clue and would probably never have had one. It was only taking a stupid online autism test, mostly for laughs and giggles, and then following the rabbit down the hole that I came to realise.

pathfinder OP ,
@pathfinder@beige.party avatar

@Susan60 @EVDHmn @actuallyautistic
I also felt driven to justify myself, although never could. And yes, so much more at peace now.

pathfinder OP ,
@pathfinder@beige.party avatar

@Twoflower @actuallyautistic
Knowing the stress is also in a sense dealing with it. Rather than it being in the background, unacknowledged and therefore far more corrosive.

pathfinder OP ,
@pathfinder@beige.party avatar

@EVDHmn @actuallyautistic
Even with an actual diagnosis, there is still a lot to process and understand. It may point you in the directions you might want to look, but you've still got to do the work. I think this is sometimes the overlooked part. We're all so very different from each other, that true understanding is very individual and basically takes time and motivation. Sometimes that means we have to be in the right place to be able to start.

Tim_McTuffty , to ActuallyAutistic group
@Tim_McTuffty@beige.party avatar

Diary of an ASD Squirrel. Day 233 , Monday 17/06/2024

Geoff was a vicious bugger last night he had to be evicted from under the covers & subdued with paracodol !

Had a nice chat with the CDP 🧚‍♀️ until around 1am when the pain relief fully kicked in & sleep overtook me.

Up at just after 6am to get breakfast for Mrs S.

Had to spend the day elevating Geoff to new heights , which seemed to impress him to a degree. I let the pain killers wear off thru the day so that I can reduce the risk of dependance. That said will be hitting them tonight because Geoff is an unforgiving toe it seems.

So talking to a couple of peeps today & my low selfesteem / Imposter Syndrome kicked in again.
I know logically that multibillion dollar companies don’t just let anyone play with their mainframes & critical systems. I know that few folks expertise covers the full breadth of computing related areas. But still I cannot help but feel a dullard in the face of a lot of my peers.
Possibly it is because I made career critical decisions based on incomplete knowledge (ie I was autistic) that within a decade laid waste to my professional career & broke me to the point of having to retire early on health grounds.
It could also be that I am my own worst critic & still berate myself for not doing better then, & now.

I fear that all I am doing now is treading water, waiting for the inevitable alternative to taxes.

Managed to get a few hours in on NMS for the first time in a few days. Finished the first of 4(5? ) phases & got a couple achievements in a few of the others .

Final Thoughts.

How can I think about moving into social circles where I can stress about whether a whole new group of people might judge me & find me wanting?

How do I not be like this ?

Thank you to all those who are helping me on this journey, in a myriad different ways. I am thankful to each & every one of you! 🫂 🫶🐿️🖖

@actuallyautistic

pathfinder ,
@pathfinder@beige.party avatar

@Tim_McTuffty @actuallyautistic
I suspect that most of us are our own worst critics and also feel that our lives don't exactly bare cross scrutiny in terms of how successful they've been. So, if nothing else, you're in good company. The truth is, that we don't have the capacity of comparing ourselves against others in anything like a fair way, not the way allistics seem able to do it with ease. We will always be harsher and crueller than the facts indicate. Perhaps, it's best not to try. Judge not by what you've been, but where you're going, seems to be more our speed and inline with our natures.

chevalier26 , to ActuallyAutistic group
@chevalier26@mastodon.social avatar

@actuallyautistic In the process of completing my online faculty training course to be a GSA next year...literally EVERYTHING is so vague and confusing.

Emailed the faculty coordinator about it and he told me that I was so ahead in the course that I was outpacing the course administrators. So basically, I'm working ahead so quickly that IT and my course instructor haven't had a chance to update my course info, so that's why everything is confusing.

massive eyeroll

pathfinder ,
@pathfinder@beige.party avatar

@chevalier26 @actuallyautistic
I think it's one of those things where it depends on the circumstances. In the right environment questions are not only welcome, but a required part of the process. A good teacher not only wants their pupils to ask if they are confused, but will use these moments as a way of making the process more interactive and productive for all.
In other situations questions are seen as either an unwarranted interruption, or as a sign of personal failure and even possibly an attack on the person's position.
Making it clear beforehand that your questions are necessary and not to be judged as anything other than genuine, may help.

niamhgarvey , to ActuallyAutistic group
@niamhgarvey@mastodon.ie avatar

Very exciting book post today 😉
@actuallyautistic

pathfinder ,
@pathfinder@beige.party avatar

@niamhgarvey @actuallyautistic
🎉 🎉 😀

catswhocode , to ActuallyAutistic group
@catswhocode@mastodon.art avatar

@actuallyautistic I love this group, btw - it makes me feel so seen!! it's nice to know that there are other people who feel/do the same things 😄

pathfinder ,
@pathfinder@beige.party avatar

@DoctorDisco @catswhocode @actuallyautistic
Indeed 😊

chevalier26 , to ActuallyAutistic group
@chevalier26@mastodon.social avatar

@actuallyautistic How do y’all deal with people who say that autism doesn’t even exist, and that it “suddenly” cropped up over the past few generations because people have been “mentally coddled”? Somewhat in the same vein as “there is a diagnosis epidemic” but much more extreme.

pathfinder ,
@pathfinder@beige.party avatar

@chevalier26 @actuallyautistic
Beyond pointing out the absurdity of that, because autism is primarily genetic, and genetics don't work that way. Probably the best thing you can do is nothing. If they are capable of believing something so stupid, there's little hope for them and nothing to suggest that wasting your valuable time and effort trying to prove otherwise will be even remotely worth it.

pathfinder ,
@pathfinder@beige.party avatar

@MuppetRat @chevalier26 @actuallyautistic
There is a reason why so many of us learnt to mask so well, so early and it wasn't for laughs and giggles.

olena , to ActuallyAutistic group
@olena@mementomori.social avatar

I don’t have nostalgia. I don’t miss places. I may remember them vividly, and love something about them, and hold it dear in my heart, but when I leave - I don’t want to come back.
Actually, I feel rather bad if for some reason I have to. Because the place has already changed. Because I have already changed. Because we’re out of sync now(if we ever were). Because I don’t belong. And seeing that hurts actually way more than just not returning.
Maybe it has something to do with the lack of object permanence. Maybe it is more about that autistic refusal to accept the reality which differs from expectations. Inside, I feel like a kid having a meltdown in the middle of the shopping mall because the toy they got was not 100% what they imagined it was going to be. No place is what you remember when you return after leaving. Maybe that’s the reason.

Is it something other people also experience often? Do you feel nostalgic often or refuse to get back?




@actuallyautistic

pathfinder ,
@pathfinder@beige.party avatar

@olena @actuallyautistic
I'm like you. The past is the past, there is no going back, because nothing ever stays the same. Trying to return and recreate that past, beyond being pointless, is only ever going to be a reminder of what was, which in its own way can sometimes be sad, but which ultimately is never going to be satisfactory.

janetlogan , to ActuallyAutistic group
@janetlogan@mas.to avatar

Planning on attending another nearby celebration tomorrow afternoon. It's about an hour's drive each way, and runs from noon until 10pm. I'm hopeful that I will have the requisite in order to go the day.

Last time, the crowds didn't overwhelm me, which I was pleased by. I assume that had a lot to to do with being around my tribe.

@actuallyautistic @spoonies

pathfinder ,
@pathfinder@beige.party avatar

@janetlogan @actuallyautistic @spoonies
😊👍

Tim_McTuffty , to ActuallyAutistic group
@Tim_McTuffty@beige.party avatar

Diary of an ASD Squirrel. Day 230 , Friday 14/06/2024

I am going to shamelessly nick an idea of a dear friend & my left big toe will henceforth be known as ‘Geoff the Gouty Great Toe! (Big toes used to be called Great toes back in the olden days seemingly)

An awful night last night I ate something that Geoff really disapproved of & he was not shy in putting forth his view ! I took his disapproval for an hour then medicated his ass with some codeine & paracetamol.

Up early this morning despite the disturbed night & Mrs S. being on holiday. Pavlov’s Squirrel !

Had a fairly easy morning & rested my poor,sore tootsies.

It struck me this morning in the light of the last couple of days entries that there is one major problem with yon Social Prescriber getting me to go to this Social Cafe …. They are not providing me with the tools to cope with this first!

One of my NT guides pointed out ,& I’m paraphrasing here, that just because I can do the whole socialising thing doesn’t mean I should. There is such a concept as ‘too much of a good thing’.

I remember the last time I was in a prescribed ‘social’ situation - attending the Cardio rehab course after my MI. Long story short , it was a disaster , I ended up storming out on the penultimate session because the social pressures were too much!

Today ,online, one of my prominent traits showed up - I can be very blunt at times, I fail to ease my point into a conversation - my NT brain proffering to ‘hammer home’ the point rather than be more subtle & gentle.
My ASD diagnosis report picks up on this & makes the point that it can ,& indeed has, trip me up in social situations!

If I decide that I really do want to move out of my current comfort zone into a more physically social one then I need to work with the various health professionals to get the sequence right & get the tool kit first!

Tonight I felt that I struck a decent compromise for tea. I did have pizza , but Ham n mushroom not a meat feast - I felt the latter might be taunting the gout gods just a little too much.

At this point Geoff is quite happy so long as I don’t try anything too athletic. Hopefully that will continue thru tonight!

Final Thoughts.

Geoff has made his views very clear on the whole diet thing, namely that he is in charge!

Is it a good thing or a bad thing I have anthropomorphised my big toe ? Is this an indicator that I should resist mixing directly with the rest of the human race?

Thank you to all those who are helping me on this journey, in a myriad different ways. I am thankful to each & every one of you! 🫂 🫶🐿️🖖

@actuallyautistic

pathfinder ,
@pathfinder@beige.party avatar

@Tim_McTuffty @actuallyautistic
Everything Tum. Sorry about Geoff. Have you considered starting a food diary and everytime Geoff plays up noting down what you ate that day. It may help you pin down what aggravates him.

undefined_variable , to ActuallyAutistic group
@undefined_variable@mementomori.social avatar

@actuallyautistic Opinions and advice welcomed. Of social media, I'm only here on fediverse. And I've been mostly inactive, due to various reasons. It hasn't served me well, one could say. Probably mostly because I didn't tailor stuff for myself, but followed all those "You're new to Mastodon, here's what you should do" posts. (As a sidenote, if you're neurospicy, don't follow such things in general. Utilize yes, get ideas yes, but they are not meant to be followed!)

Now I'd like (read need, for personal reasons) to get more active, but specifically within the neurodivergent community. So what is an AuDHDer to do?

Ditch this withered generalist account of mine (I'd need to tear it down and start from scratch anyways at least) and hop on some ND instance but still stay on fedi?
Hop over to Bluesky and but just follow other ND folks?
Discord, Ceiling Cat forbid?
Something else?

Like, what has worked best for you, to connect to peers in this kind of setting? What would you recommend? What would you advice against? Mind you, I'm one of those "grew old but didn't grew up" spicyheads so... Yeah, there's that too.

Halp, please!

pathfinder ,
@pathfinder@beige.party avatar

@undefined_variable @actuallyautistic
I don't think instance matters. Reach and connection is achieved through using the hashtags and groups, following and interacting with people.

Susan60 , to ActuallyAutistic group
@Susan60@aus.social avatar

Wondering whether some older undiagnosed autistics might’ve been mis-diagnosed with dementia due to poorer executive function as they age & cope less well with stress. @actuallyautistic

pathfinder ,
@pathfinder@beige.party avatar

@Susan60 @actuallyautistic
Or, as many of us, in a deep state of burnout. There seems an almost inevitability of it as we get older, no matter our awareness levels. Simply from the grind of existence, inevitable reduction in resources and stamina and increasing overwhelm of grief and change and loss of routine and comfort that it brings.

melindrea , to ActuallyAutistic group
@melindrea@beige.party avatar

One of my least favourite bits about "allistic people/researchers discussing autistic people" in this weird pathological way that's just ... incorrect!

Like "autistic people have restricted interests". Uh-huh. You're telling me that if I talk to an allistic person, no matter what we talk about they will have an interest in it? Oh, they don't? huh. But that's not them having restricted interests? Gotcha.

Or "pathological need for fairness" ... why is it a bad thing to want things to be fair and acting the same whether or not someone is watching?

*grumbles in @actuallyautistic *

pathfinder ,
@pathfinder@beige.party avatar

@melindrea @actuallyautistic
Well, obviously. If it's not how they typically experience reality, then it has to a pathology. Otherwise, they might have to question the validity of their experience and perhaps even judge it against something obviously far superior. 😂

Tim_McTuffty , to ActuallyAutistic group
@Tim_McTuffty@beige.party avatar

Diary of an ASD Squirrel. Day 229 , Thursday 13/06/2024

A better nights sleep last nigh, although I did wake up early, had a nice chat with CDP 🧚‍♀️.

Mrs S. was in the office today & I really wasn’t feeling it this morning ,so after breakfast I went back to bed for a couple of hours.

My brain drove me out of bed just after 9am, unless I’m really quite poorly I cannot stay in bed for too long.

So I was reflecting on the meeting with the Social Prescriber yesterday & subsequent conversations with friends on here.
I wonder if I NEED to be more social than I am now. I wonder if the benefits outweigh the stress / anxiety etc. of being in a group of people.

Also the fact that any decent support is a decent distance away. (thanks UK Gov - so much for the promised improvement in MH services NOT !)

I am social to an extent, I regularly chat , laugh ,cry etc with so many lovely folk on here. Yes it is a relationship in a digital environment, but does that make it any less valid an experience?
The Fediverse is unlike any other Social Platform, it is possible to develop real friendships here & the lack of an algorithm makes for a more interactive experience!

Honestly I don’t know, when actually confronted with the help available, if it is worth pursuing.

On a more positive note I had a great banter session with several of the Peeps on here this afternoon / evening , thanks to all who participated, I enjoyed it enormously! 😊

Final Thoughts.

I never expect that I was fighting for so little, it is quite the anti-climax.
I am glad I got my diagnosis, that has helped me understand myself in ways I did not expect, & almost every day I learn something new.
Apart from anything else I found a whole group of Peeps who relate to & share experiences & challenges unique to ND folk!

Thank you to all those who are helping me on this journey, in a myriad different ways. I am thankful to each & every one of you! 🫂 🫶🐿️🖖

@actuallyautistic

pathfinder ,
@pathfinder@beige.party avatar

@Tim_McTuffty @actuallyautistic
I think the question isn't how much real life socialisation do you need, but how much do you want. Of course, a certain element of real life is needed. Otherwise, you might end up like me 😆 But, beware of the dreaded feelings of "should". Therein lies trying to do and be things that aren't really helpful and often, are actively harmful.
And yes, this place definitely counts as socialising. Where else can you interact with so many compatible souls? And I would say that this place has done more for my mental health, than anything else has done in all my 60 years. (Although, to be fair, that's not exactly a high hurdle to pass 😂)

catswhocode , to ActuallyAutistic group
@catswhocode@mastodon.art avatar

@actuallyautistic Do you ever question whether or not you're autistic? I do in part because some of the traits I have can also be attributed to my brain injury, so I don't know if it's one or both

pathfinder ,
@pathfinder@beige.party avatar

@catswhocode @actuallyautistic
I wouldn't say always, but it's not far off. In part it's a sense of not feeling worthy, as if I'm somehow fraudulently claiming something I don't deserve, just because it's finally giving me some sense of peace and self-acceptance.
In part it's the fear that this rug will be pulled out from under me, just the way it always has been and that it's best not to get too comfy.
To be fair I doubt if there are many of us late diagnosed who don't experience it for one reason or another.

pathfinder ,
@pathfinder@beige.party avatar

@catswhocode @actuallyautistic
Whether you want to get officially assessed will always be a personal choice, based on yourself and your circumstances.
The need to do so, doesn't include though acceptance here, or in most autistic spaces, how much you can learn from it and how much benefit it can bring you.
Personally speaking I've never really seen the point, not at my age and not given my learnt distrust of medical omniscience. Quite frankly I would still doubt even with an official nod.

pathfinder ,
@pathfinder@beige.party avatar

@pa @catswhocode @actuallyautistic
Exactly!

pathfinder ,
@pathfinder@beige.party avatar

@catswhocode @actuallyautistic
It's a very good site. If I'm feeling especialy doubty I often find myself back on there just to remind myself that I'm not just playing pretend. 😊

pathfinder ,
@pathfinder@beige.party avatar

@catswhocode @actuallyautistic
How highly I scored on all the tests actually gave me another source for doubt, given that I'd managed to live vaguely normally for over 5 decades without either beginning to suspect or being suspected of being autistic.
The test for how highly I mask in every day life was what finally allowed me to accept.

pathfinder ,
@pathfinder@beige.party avatar

@catswhocode @actuallyautistic
Yes. The results were far more revealing than I was expecting.

pathfinder ,
@pathfinder@beige.party avatar

@catswhocode @actuallyautistic
Parents often are, especially for those of us who are older. Generally a mix of very poor and negative understanding of what autism is, added to the fact that they've had a lifetime if seeing you, as just you. Also, if they are really neurodivergent too, the traits to them are just normal behaviour and therefore unremarkable.

pathfinder ,
@pathfinder@beige.party avatar

@catswhocode @actuallyautistic
It certainly nothing unusual for one or both of our parents to be neurodivergent. But as often as not, never have known it. Or, if aware of certain things, perhaps seeing them only as negatives not to be wished for.
To be honest, depending on their age and natures, it's not always worth pushing it too far. The amount of effort and re-education required isn't always worth the grief.

AnAutieAtUni , to ActuallyAutistic group
@AnAutieAtUni@beige.party avatar

I am so HAPPY I have a virus! And I know most of you won’t understand why straight away…

I thought my chronic illness was showing a new longer-term pattern of decline. But it isn’t! It was a virus that is only now showing up and being obvious. It means my chronic illness “decline” was actually it just flaring up alongside the virus, like it usually does when I get a virus.

I’m so “happy”!! Haha!! I mean… technically, I’m just relieved, but the relief is MASSIVE so I’m actually happy. Which is weird! I guess my happiness-ometer works differently to most?!

@mecfs @actuallyautistic

——-

I shared the above because I want to share some ‘positive’ news. If you’re cool with that - thank you! If you’re still confused, here is more context that a few people will benefit from:

[Someone will feel compelled to educate me about how viruses are not harmless. If they do, here’s what you’ve got to know: and all this is said in a light-hearted jest-ful tone, but also with seriousness. I have ME/CFS which is very likely a post-viral syndrome just like long covid, except there’s no way of knowing which virus did it. I do not WANT viruses; that is not the point of the above statement. It’s that I used to be literally housebound for years but have maintained ‘mild’ ME/CFS for years since and was terrified of going BACK to that. Yes, I’ve had covid and vaccines and thankfully I’ve recovered from them all and know not everyone does… catching viruses is NOT a sport I took up 😜 I don’t go out mingling trying to attract viruses like swiping right on a dating app… I’m careful, in my own way, and in all honesty I barely go out, especially compared to people who commute to work daily. No, masks aren’t 100% effective but they’re damn good! No, I won’t be going out mingling to pass on this virus. Hoping I have covered everything that an internet “educator” might say.]

pathfinder ,
@pathfinder@beige.party avatar

@AnAutieAtUni @mecfs @actuallyautistic
In the very strange way that this is, congratulations and hopefully get better soon 😊

snoopy_jay , to ActuallyAutistic group German
@snoopy_jay@mastodon.world avatar

@actuallyautistic To those who do not (!) have children: Is family important to you? I can not say that my family has mistreated me in any way or not accepted me the way I am, and yet I am drifting away further and further every year. I think I haven't seen any of them in, like, 7 years? I think I just don't like spending time with humans, related or not? 🫥

pathfinder ,
@pathfinder@beige.party avatar

@snoopy_jay @actuallyautistic
In most cases, we are brought up with this notion of how important family is. That family is everything, that they will always have your back and want the best for you. That they will always be there for you and how important they are. It is pushed relentlessly onto us from as early an age as possible and yet the ideal of it, isn't always something that bares any scrutiny, let alone any sort of close one.
As autistics, we tend to absorb this sort of message without really questioning it and as a consequence, sometimes feel a very real pressure and obligation to our families and feel quite guilty when we fail by our own expectations to be as active as we think we should be, or as involved.
But as autistic's we also tend to have a real problem with doing things that hold little, or no interest for us. If the family dynamic is overwhelmingly neurotypical, if so many of the dramas and issues are things that you don't even understand, let alone feel any connection to, then being really involved becomes difficult, if not impossible.
Also and perhaps something that we often fail to think about. Your family could very well include people who, as much as you may love them, aren't actually the sort of people you would choose to spend time with, if they weren't family,
So is it any wonder that many of us, even without the addition of trauma, or abuse, often find it so hard to family.

pathfinder , to ActuallyAutistic group
@pathfinder@beige.party avatar

@actuallyautistic

I often describe myself as a minimal speaker. It's because whilst I can speak, unless seriously overwhelmed, I vastly prefer not to. In large part, this is because the effort of speaking, and it is, more often than not, a real effort for me, rarely seems worth it. Since realising I am autistic, I have come to realise why this could be and also why communicating on here is so much easier and not just because it's text, because I struggle with that elsewhere too.

Language, whether text or verbal, is communication. Whether that be communicating thoughts, or feelings. Expressing emotions, or ideas. It is the medium and not the source. The source is where these things are coming from and it is what shapes our use of the medium and therefore in large part the assumptions we make about how others are using it and therefore the likely success of any communication.

Enter the double-empathy theory and the general acknowledgement that autism is a fundamental difference in the ways in which our brains work, often exampled by describing it as a different operating system. It means that whilst I am using the same language to talk with allistics, how we're both using it, the ends and purpose, even the nature of the information being transmitted, can often be fundamentally different.

An example I have used, is to compare it to a foreign language speaker with a reasonable understanding of the local language, but having to work incredibly hard to keep up with a conversation and having to constantly check their translations and whether or not they were making the right replies and not offending anyone. But to be truly accurate, you would also have to add in a cultural divide, a root level difference in the expectation and assumptions they are making about life and how this was also shaping their communication.

This, I think, is why speaking has always been so hard for me. Why it's always been so much of an effort and often without point. It's not that I am speaking a foreign language, or that my words themselves can't be understood. But that the information I am attempting to convey and the intended purpose of that information, is so far out of phase with the expectations of those around me, that miscommunication, confusion and the all too familiar fallout becomes almost inevitable. It's also why speaking here is so much easier.

Effective communication is more than just using the right words, it's about realising the intent and purpose behind those words. About understanding where someone is coming from as much as what they are trying to say. And that, as the saying goes, takes two to tango.


pathfinder OP ,
@pathfinder@beige.party avatar

@neversosimple @actuallyautistic
Like for a lot of things about us, our communication tends to be information rich. But that means it takes time to both formulate and express. Neither of which tends to go well with verbal communication and especially the sort of high paced, information sparse and quick changing communications favoured by allistics.

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