AnAutieAtUni

AnAutieAtUni , 14 days ago to ActuallyAutistic group

OOPS! Kind of (yeah, OK, not really) accidental book haul! Haha!

Made a list of things to do after exams and I’m working through them. One that kept coming up was going to a large book shop to spend an hour or two browsing several book sections, just being there, no rush. Then stumbled across these three gems!! Couldn’t choose between them as they each had different benefits and styles. I love that I now have lots of different ‘voices’ all on the topic of autistic self care and mental health.

My plan is to use them to dip in and out of, compare their advice and generally absorb them over time. Will be most helpful when I’m in the midst of struggles. I’ll just grab them, sit on the floor with them around me, various pages open, and gather a collection of words of wisdom at once.

The books in the photo are (in no particular order):

• The Guide to Good Mental Health on the Autism Spectrum, by Jeanette Purkis, Dr Emma Goodall, Dr Jane Nugent (forewords by Dr Wen Lawson & Kirsty Dempster-Rivett)

• Looking After Your Autistic Self, A Personalised Self-Care Approach to Managing Your Sensory and Emotional Well-Being, by Niamh Garvey @niamhgarvey 💚

• Self-Care For Autistic People, 100+ Ways to Recharge, De-Stress, and Unmask!, by Dr Megan Anna Neff

(If there are any other authors of these books on Mastodon who I can tag here, let me know!)

What was missing from the bookshop’s shelves are books on:

• Any topics related to being AuDHD, not just autistic or ADHD

• Smaller, more manageable-sized books on life as an ADHD-er (there were 2-3 great books there but all ginormous! Too daunting for me.)

They only had a selection of all the great books I know are available though. Check out:

https://autismbooksbyautisticauthors.com

@actuallyautistic @actuallyadhd

AnAutieAtUni OP , 14 days ago

@niamhgarvey @actuallyautistic @actuallyadhd Oh it was such a heavenly experience!! I’m so glad they had your book there! I was excited when I recognised your name - I’m not great with names and we’ve only relatively recently connected here! Can’t wait to dig into it. Thank you for creating such a wonderful book 💚

chevalier26 , 15 days ago to ActuallyAutistic group

@actuallyautistic #actuallyautistic I’m in shock right now and feel like I could burst into tears…my parents and I are out at lunch, and my mom just asked me out of the blue, “what gives you joy?” And I said, “why are you asking me that?” She essentially responded by telling me that to her, I showed no evidence that I had any joy in my life, and that there is nothing that makes me happy.

I’m at a loss for words.

AnAutieAtUni , 14 days ago

@nellie_m @adelinej @chevalier26 @actuallyautistic Just wanted to add another perspective - I sometimes remove the group tag from a reply because I do not want my reply boosted for others to see for many reasons. Please, please let people choose what level of exposure they’re comfortable with, otherwise they will feel they’re not allowed to reply to posts with a tag 🙏

Example reasons:

• My reply is personal to you or me.

• I may currently be overwhelmed and can’t handle extra people jumping in on a conversation all at once, especially if it’s personal in nature.

• Some may not want exposure to the group tag at all, but may want to reply. Especially true if just a follower of the account, not the tag.

Etc. 💗

From my perspective, I am usually fine if people find my comment via the original post’s comment list, I just don’t want to boost to a much larger audience all at once. I choose the level of visibility for my posts and replies, and prefer ‘unlisted’ so this is possible. I know I can choose different options and further limit the visibility, but I don’t always wish to.

What I love about Mastodon is that lets people have control over their content in this way.

AnAutieAtUni , 14 days ago

@nellie_m @adelinej @chevalier26 @actuallyautistic I hear all you’ve said, and totally get that you want people to use the group tag so their comments are boosted and you don’t miss any replies. I enjoy this feature too, and discover new accounts this way as well. You’re not alone.

What I want to emphasise here is I don’t use Mastodon like you do or like you assume I do. I deliberately go to an original post, making sure it’s what is selected on my screen, and then look down to find all the other comments in the threads. Sometimes I will select a comment so I can see all the multiple comments from that one, too. It’s manual. I love this approach because it avoids the problem you’ve just described you’re experiencing of missing out on replies. But it actually adds much more context for me than if I see an abstract reply appear on in my timeline.

I DON’T see comments automatically “back filled” either. I have to do what I just described above to find comments. I don’t think many people do this at all, I agree with you on this. And that’s exactly the reason I like replying without the group tag on purpose - I can AVOID lots of notifications on here all at once when I’m sensitive to that. Maybe only the author of the original post will see my reply - but if that’s what I intended… There HAS to be room for personal choice in this! Otherwise this is simply oppressive.

If you’re finding it tough missing out on replies, you’re not alone in that just because you’re on a single-user instance. Mastodon also has a chronological timeline, so even if we follow accounts we can miss a tonne they post unless we’re on here 24/7, or we opt in to receive notifications when they post (this is a button on a user’s profile page). This goes for the group tag account too - just because someone tags it doesn’t even mean you will see it unless you have done these things.

I really do understand what you’re describing as the problem. There is no algorithm to ensure we see all new replies. It’s frustrating. FOMO is not fun. But I see one benefit of this in that I can reply AND avoid being overwhelmed at times I need most… which isn’t all the time, but it keeps me active in the community. Sometimes it has been a lifeline to me. It’s so valuable I can’t even put it into words. I used to feel isolated when I needed connection but knew I couldn’t post as I was not able to handle mass exposure all at once.

Mastodon is much more manual to use. It’s not perfect. I love it, but it does take a bit of labour!! 😅

Feel free to keep asking people to include the group tags in replies, but please, please respect people who deliberately choose not to. We have reasons - reasons that are equally as important as yours.

catswhocode , 17 days ago to ActuallyAutistic group

@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

AnAutieAtUni , 17 days ago

@catswhocode

Yes, quite frequently. Trying to be better at identifying my unique presentation of autism via traits so I’m not comparing myself to others so much and feeling like an imposter. But in reality, not sure I’ll ever stop questioning and doubting at this point! Some of my traits also overlap with other things. Since everything happens in the same brain / body, I’m trying not to label traits as one thing only, though. Add in a nice dose of trauma and everything gets extra tangled up, too!

@actuallyautistic

AnAutieAtUni , 17 days ago

@catswhocode

Exactly! And they absolutely should! 📦 😆

@actuallyautistic

AnAutieAtUni , 17 days ago

@catswhocode

Woah! Yes! That would be so cool!

Tries to hide the fact I just had to Google hyper cube 🤣

I’m thinking the autism box could be shaped like an infinite staircase in the same colours and shape as the autism infinity symbol… :neuro:

@actuallyautistic

AnAutieAtUni , 17 days ago

@catswhocode

Oh - cool! I’m semi-beginning a math SPIN. Started getting interested in math-based physical puzzles thanks to the French TV series, Astrid: Murder in Paris.

But also been rebuilding my confidence in the subject for a year or so now. High school was a terrible learning environment for me, and even though maths was a favourite subject that I was good at beforehand, I was recommended not to pursue further study due to struggling at high school. Very annoying! But it’s a joy to try to catch up now (Khan Academy is a fab tutorial website that’s helping me).

Started reading about history / fun facts about maths too, e.g. ‘Here’s Looking at Euclid’ book by Alex Bellos.

If you have any math based things you think might be good for a learner like me I’d love to hear about them!

@actuallyautistic

AnAutieAtUni , 16 days ago

@Thebratdragon @DoctorDisco @catswhocode @playinprogress @actuallyautistic I love where this thread went 💖 and don’t care one bit I couldn’t keep up with the maths references! It’s so awesome when people connect over SPINs.

AnAutieAtUni , 17 days ago to ActuallyAutistic group

Autistic confessions:

Hi, I’m 41 and I still don’t know what “congratulations” actually means.

Is there one congratulation?

Is there an ideal number of congratulations?

Where on earth did the phrase come from?

Is there a progratulation?

And… why are people congratulating me on my degree before I know if I’ve passed my degree and actually got it?! (They don’t refer to congratulating me only on completing my assessments, it seems to be related to the degree as a whole.)

Even though all these things confuse me, you wouldn’t know because I have trained myself to say “congratulations” at appropriate times, socially. It almost, maybe, probably looks like I know what I’m saying! 🥷

@actuallyautistic

AnAutieAtUni OP , 17 days ago

@janetlogan @Jobob @actuallyautistic Oooh enjoy your news or show joy makes sense! Amazing how language changes over time. Especially languages like English with so many different roots and influences.

quinze , 17 days ago to ActuallyAutistic group

Heya @actuallyautistic folks, do we have a Prime Directive around undiagnosed folks?

Trans folks have the Egg Prime Directive: don't tell someone they might be trans, because it's conter-intuitive in most cases (pushing people deeper into the closet).

As I disclose my diagnosis to people close to me, an unsurprising amount of them resonate with my experience and ask me whether I think they might be. I refuse to answer but share resources and offer to reply to questions about my personal experience.

AnAutieAtUni , 17 days ago

@quinze Great question. I don’t have the answer but keen to read others’ answers.

I’m genuinely not sure how I would have reacted if someone told me they thought I might be autistic. It could have gone either way. At various times in my life it could have gone very badly. But even if it did, it would have planted a seed. I rarely forget these things. Often keep pondering feedback for years afterwards. I DO wish I knew sooner, but would I have been in the right mindset to listen? Hmm.

@actuallyautistic

snoopy_jay , 17 days ago to ActuallyAutistic group German

@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? 🫥

AnAutieAtUni , 17 days ago

@snoopy_jay For what it’s worth, it’s ok to not want to spend time with people, or family, specifically. It’s only if it bothers you or causes issues for you that it’s a problem. Everyone does things differently, but media messages always paint perfect pictures of families. Not sure how many of those exist.

No kids, and I do want to be with my family but it’s complicated. They’re all likely ND but not identified, all traumatised. I just want to ‘be’ but I’m expected to mask heavily and perfectly in every area and level of my life. I feel hated for the fact I don’t conform, but I literally can’t. I could do it before but then got a chronic illness in my 20s which broke all that. I’m trying to accept their choices to mask etc though, not try to change them. Hoping to cultivate mutual respect and support even though our values probably differ greatly.

So I see them in measured doses. I want to see the youngest generation much more and watch them grow up, but I accept how things are. Taken a long time to get to this more ‘peaceful’ place. Not always literally peaceful, but I am ‘at peace’ with how it is, if that makes sense.

@actuallyautistic

AnAutieAtUni , 17 days ago to ActuallyAutistic group

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.]

AnAutieAtUni OP , 17 days ago

@wakame @mecfs @actuallyautistic OMG yes you nailed it!

pathfinder , 19 days ago to ActuallyAutistic group

@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.

#Autism
#ActuallyAutistic

AnAutieAtUni , 18 days ago

@pathfinder @actuallyautistic I totally hear you on this. I suspect my dad was very similar, too. One reason I suspect I might have ADHD is I have impulses to speak when I absolutely don’t want to and have even decided on that beforehand. It can be exhausting. I really enjoy the act of listening, too. Even that needs its limits, but it’s much more sustainable for me.

AnAutieAtUni , 18 days ago

@Zumbador @pathfinder @actuallyautistic Omg yes, I know those situations! I can blurt out silly endings to what people are saying when they have taken a brief pause. I’m not as funny as my brain thinks I am… has got me into trouble too!

I also hate when I’m impulsive-chatty because it gives me no room to say the truth like “actually I’m damn exhausted and need to leave in about 30 seconds”. It makes it seem like I’m moody or just got angry etc.

@actuallyadhd

AnAutieAtUni , 20 days ago to ActuallyAutistic group

One major grade being released today. Except the professor who said she’d release it this morning is unreliable and doesn’t always do what she says or when she says she’ll do it.

So, I am waiting for a grade that represents the entire of a compulsory module (=need to pass it in order to graduate next month!) but it was just one piece of work that went into it in a format I have never done before (highly unpredictable outcome)… and there is no predicting when the grade will be released.

Arrghhhhhhhhhhhhhhhhhhhhhhhhjdjejdkwkwndkwndkenekendkdnekek🤪🫠

Send cake please. And puppies. And giant gentle horses. Kthnx.

@actuallyautistic

AnAutieAtUni OP , 20 days ago

@pathfinder @actuallyautistic Thank you!! I may need to brace for the possibility she may release the grade tomorrow… or even later in the week! Noooooooo