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AnAutieAtUni

@[email protected]

My posts are mostly me figuring out how to live life fully as a “later” diagnosed #ActuallyAutistic (dx 3 yrs ago) & balancing this with ME/CFS/SEID. #MECFS

In my early 40s. Found myself back in HE as mature undergrad science student! I hopefully graduate in July 2024! 😅

Interdisciplinary brain: I work best when combining two very different specialist skillsets.

Only impressed by kindness. ☯📿 (She/any). England UK.

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AnAutieAtUni , to ActuallyAutistic group
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Every now and then I go through a phase of having no idea what to post on social media and definitely clueless of how to reply to even the loveliest comments on previous posts.

I usually favourite (star ⭐️) so you know I’ve seen something. But hoping that my otherwise quietness isn’t causing any issues. It’s certainly nothing personal. Been trying to post things that I want to post but been unable to get the words right and just gave up each time.

Think it’s partly because I was thrown by having positive news, sharing it here and then being reminded by someone that the good times will end. It completely floors me sometimes when people can destroy happiness in a blink like that, whether it was well-intended (which it almost always is) or not. I’m not that strong. Needing to rebuild boundaries but no idea how. Instead, I’m just lost for words now.

If you read my bio you’ll know I’m autistic and have a chronic illness. The two are absolutely interacting all the time. My days are as variable and unpredictable as it gets, with both potentially lifelong, but I refuse to give in and give up on my life.

I will carpe the fuck out of my diems until I die. And you can quote me on that - please do, especially if I’m having a ‘low’ day.

@actuallyautistic @mecfs

catswhocode , to ActuallyAutistic group
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@actuallyautistic @actuallyadhd Is it an ADHD/autistic thing to have tons of tabs open in your browser? I do this :blobfoxlaughsweat: what happens is I'll think of something, open a tab, and then forget that I opened it

AnAutieAtUni ,
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@catswhocode @actuallyautistic @actuallyadhd Don’t know if it is a trait of either, but I do this!

I am still trying to do my original task now but I ended up opening several tabs in the background, fully intending to follow through and see those pages, but by the time I get to them, I have forgotten why I opened them 😅 Damnit! If I do get round to viewing them, I can open many more tabs in the background and repeat the process until I’ve gone from 1 initial tab to too many to count! Oops!

Sometimes it’s nice to see the tabs later and go, “oh, that’s interesting!” without a clue how I got there!! I may remember how later, but I also try really hard to close tabs that have no obvious purpose (but so hard if you can’t remember if they’re important or not!!)

AnAutieAtUni , to ActuallyAutistic group
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The power of mentoring for me as an autistic adult and mature university student:

Just had my last (maybe, ever) mentor session with a mentor who has supported me with my university studies since December 2021. All thanks to the Disabled Students Allowance (England / UK). It’s just hitting me now how sad I am and how much I’ll miss her.

I didn’t really know what mentoring was beforehand, didn’t know why it was recommended to me as an autistic student by my DSA assessor, but finding such a wonderful mentor has literally been life changing, not to mention that I’ve finally completed a degree after several (5!) attempts!

As a mature student, my mentor said that my mentoring sessions focused more on helping me remember experience and skills I mostly already had and encouraging me to find ways to apply them in this new context (in university studies). I often got completely stuck, couldn’t break down big challenges into smaller, manageable problems to solve, so she would ask me questions to help me uncover more information and do this for myself. She never gave me the answers, only an occasional toolset or framework for me to use. Basically, she was helping me to help myself, otherwise known as ‘self-management principles’. This is massively empowering due to the long-term benefits. I did also sometimes need help with basics that the younger students needed help with too, like ensuring I have food at home to sustain me, especially during the most intense times. Each term, each module, each assessment all presented new situations and challenges, as it does for all students, so this skill development process was ongoing and ever changing.

The goals I chose for the mentor sessions always included getting into the habit of remembering well-being and incorporating it into my plans and daily habits. As someone who also has a chronic illness, this is essential. I am still not the best at this, though, but I’m grateful for this practice, the chance to pick up new skills and toolsets, and especially all the chances to reflect on my progress with someone who gently held me accountable (to my own goals).

My first assigned mentor was a bad fit, though - very unreliable, disorganised. I’m so glad I mentioned this to the company that supplied the mentors, and especially talked about the challenges to me as an autistic student. They heard me out and assigned me to this different mentor very quickly.

I’m sharing all this in the hopes it inspires someone else to accept support when it’s available and they think it could help them. It felt SO strange to me to have this support after so many adult years without it, but I now see why it was recommended to me. The positive effects and skills I learned will stay with me for life, well beyond the degree.

If you have a positive story about accepting support for a disability, feel free to share it below. It could be during academic studies, or could be at work, or in general life. We don’t all NEED support, and not all the time, but many of us struggle to accept help when it’s available and we need it most. I know I certainly do.

@actuallyautistic

AnAutieAtUni OP ,
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@CuriousMagpie @actuallyautistic I can only imagine there is a tonne to navigate with a PhD. It’s on my radar… maybe one day I’ll give it a shot! Maybe!

Important to note, though, having a mentor may not have changed the outcome that you left the program. I’m sure you know this already! But then, having a mentor could have helped you think it through, plan for the future, feel at peace with whatever the outcome.

I say this as I came extremely close to having to leave my degree this time around, too. I was so close to the end of the course but autistic burnout hit HARD, my chronic illness flared up, and I had nothing at all in me left. My mentor couldn’t do much. But the sessions reminded me of a conversation I’d had a few months earlier with my academic tutor where he mentioned that, although very rare, occasionally students are granted the ability to study part-time, but only if it’s their final year and a year out wouldn’t improve things. I was able to recall this option, then use the mentor sessions to break down what steps I needed to do to apply for this (a lot! Needed references and everything!)

Don’t know if it helps to know that. But, either way, hope you’re doing better away from what made you leave the PhD program. I’ve heard many tough stories about how it can be 💗 It takes courage to leave when that happens.

AnAutieAtUni , to ActuallyAutistic group
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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

AnAutieAtUni OP ,
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@Cetraria @Rhube @actuallyautistic @mecfs That’s so wonderful! And I totally hear you. Lifestyle - like living situation pressures - play such a big part in all this.

AnAutieAtUni , to ActuallyAutistic group
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Question for autistics: What did you do to celebrate or mark the occasion when you found out you’re autistic?

Context:
Many people find the discovery that they’re autistic is very helpful for them, even liberating, as they can now learn more about themselves and their needs, etc. Feelings toward it are usually quite complex, not simple, but lots of people have said they celebrated when they discovered they’re autistic because overall, it is a positive thing. Some autistic people mark the anniversary and have a mini celebration in their own way each year.

My answer to the question:
Although cakes are popular, I decided to do something longer lasting and more special to me. There is an artist who paints nature scenes with animals and I saw a beautiful limited edition print by her up for sale. I rarely ever buy pictures like this as I simply don’t have the spare cash, but the picture reminds me of myself and my love of nature and animals, and reminds me of the parts of myself I kept hidden for so long. It now hangs on my wall at home for me to see every day. I may not be openly autistic (yet) but I do want to be openly myself in other ways like being open about what brings me joy - and this painting keeps reminding me of that.

@actuallyautistic :neuro:

AnAutieAtUni , to ActuallyAutistic group
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:neuro: Today, 18th of June, is Autistic Pride Day! :neuro:

Nestled in what I like to think of as celebration month, Pride Month! :progresspride_flag:

@actuallyautistic

AnAutieAtUni , to ActuallyAutistic group
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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 ,
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@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 💚

AnAutieAtUni OP ,
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@devxvda @niamhgarvey @actuallyautistic @actuallyadhd I really liked the look of it and can see it as a fast reference book, if that makes sense. It seems easy to dip into when I’m short on time or resources, but want ideas. Loved the clear headings coloured in blue to make them easy to scan, very few big blocks of text. The book is physically small, too, which is nice!

The other books went into the depth I often crave, in two very different styles: self-care and more medical-focused mental health.

I wasn’t planning on buying books, not even looking for this topic… and I really don’t have much spare cash at the moment! So this is a testament to the impression all 3 books made; could not narrow it down to even 2 books, let alone 1. Haha!! 🤣

AnAutieAtUni , to ActuallyAutistic group
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Ageism in job hunting is a whole Thing, and goes hand-in-hand with the dangers of being overqualified.

As if job hunting when multiply disabled and cis female isn’t enough of a challenge.

I’m so tired of having to hide parts of myself. So tired of heavy masking. But apparently that’s what is required. At least at first to make that golden first impression. After that, things seem to be more flexible. But I do totally get that it’s important to stay on-topic when applying for a job. I.e. Prove you fit the job description as accurately as possible. Always be relevant, etc.

I experienced ageism and the impact of being overqualified from my fellow students who were usually 15-20 years younger than me. University staff didn’t SEEM to judge me, but most just outright ignored my past career skills and experience, as if I’d never had a job before, which could be a bit condescending but they weren’t outright cruel like the younger students could be.

I just want to ‘be’. Can we build a world with a flat hierarchy? Full of people who are curious, open minded learners?

@actuallyautistic

AnAutieAtUni , to ActuallyAutistic group
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Having a “OMFG I want to be spontaneously adventurous, exploring the world like I dreamed I would be by now” kinda day.

Feeling massive frustration, coming out as boredom initially. It absolutely sucks to have a physically-limiting illness like ME/CFS. It feels like I keep crushing the light of my spirit daily to keep going. Any exertion has to be carefully contained and dosed, otherwise it costs me in: long-term health declines, anything on my calendar as it’ll need to be cancelled, relationships, etc etc etc. Even massive JOY or excitement has triggered PEM!

Feeling this way today is also GOOD because it means I’m feeling better after my recent lengthier PEM crash and mild respiratory virus. Feeling like ‘myself’ which rarely happens day-to-day… even though the respiratory virus is still there. It’s good to feel good.

Think I’m also reacting to my weekly group NHS calls with other patients about ME/CFS. Two said they also had ADHD. And also reacting to realising I’m most likely AuDHD rather than just autistic. Claiming the ADHD side feels good, yet it’s also damn painful.

Just hope this allows me to find ways to add more spontaneity and energy and exploration into my days sometimes… no idea how when ME/CFS dulls my light most of the time, but it’s important I try! I miss that complete FREEDOM. 🐎

@actuallyadhd @actuallyautistic

chevalier26 , to ActuallyAutistic group
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@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 ,
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@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 ,
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@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.

AnAutieAtUni ,
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@nellie_m @adelinej @chevalier26 @actuallyautistic I see this problem here, too, sometimes. 🤷 Maybe it’s not as often as you see it, though, I truly have no idea as I have no way to compare our experiences here. A Mastodon quirk that I’m not a fan of… 😕 I might see it more on another account that I use for my career - that one is a very popular instance, too! So it isn’t just your instance, or just about numbers of users.

(I still stand by what I said that everyone has the right to choose whether or not to comment with a group tag or remove it. We have no ‘right’ to view people’s comments, even if it sucks to miss out. People aren’t usually removing the tag thoughtlessly; it’s for their own needs.)

AnAutieAtUni , to ActuallyAutistic group
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Ok, deep breath, ADHD assessment rescheduled immediately by the assessor due to tech problems.

Phew. I was all ready. But it is also ok. I have a mild respiratory virus that means postponing might not be such a bad thing. It has been a wild week, too.

Realised I think I am AuDHD. Been trying not to draw my own conclusion on that, though. Not sure how I feel about self-dx. I support others self-dx’ing, but why can’t I do that for myself? Suppose it’s the same for most who only realise they’re ND later in life.

About 2 weeks to wait for the next appointment. Hopefully it’ll be a much calmer week than my weeks have been lately! 🌻

(Already dx’ed autistic, no option for ADHD assessment at the time.)

@actuallyautistic @actuallyadhd

AnAutieAtUni , to ActuallyAutistic group
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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 ,
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@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 , to ActuallyAutistic group
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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 ,
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@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

catswhocode , to ActuallyAutistic group
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@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 ,
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@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 ,
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@catswhocode

Exactly! And they absolutely should! 📦 😆

@actuallyautistic

AnAutieAtUni ,
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@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 ,
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@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 ,
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@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 , to ActuallyAutistic group
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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 ,
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@wakame @mecfs @actuallyautistic OMG yes you nailed it!

snoopy_jay , to ActuallyAutistic group German
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@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 ,
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@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 , to ActuallyAutistic group
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Fifth day in a row of mostly being at home, 4 of those days are due to ME/CFS exhaustion. Massive red flag for me. I used to only need half or 1 day to recover. Need to figure out what’s going on. 😣

Suspect I’m not realising just how demanding some activities are, so not allowing a slow build up of them nor adequate recovery.

Also had more social demands than most of the year to date. Social is the fastest way to deplete my resources.

Oh and stressful therapy ‘consultation’ (waited a year after referral to go through my entire trauma timeline so that now I can wait another year for therapy to begin, maybe).

Oh and ADHD assessment coming up.

Oh and waiting for final degree results.

Oh and job hunting & networking…

And what else did I forget?!

Oh! I had a birthday yesterday with social visits, plus lengthy 2.5 hour medical appointment.

See what I mean? (Already forgot my own birthday LOL!!)

I haven’t been pacing; I’ve been in denial of these activities’ impacts.

@mecfs @actuallyautistic @actuallyadhd

pathfinder , to ActuallyAutistic group
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@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.


AnAutieAtUni ,
@AnAutieAtUni@beige.party avatar

@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 ,
@AnAutieAtUni@beige.party avatar

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

The grade was released! 🎉 No more waiting - thank goodness. Yet another grade that’s lower than I hoped, though. These latest grades have certainly helped prevent me from building up an ego and getting over-confident in myself?! Ha! 🤪🤣 (I AM genuinely glad for that!)

But in reality, I expected a low grade for this. The Prof was terrible at explaining her assessment requirements. I emailed to ask for clarification and she refused to reply citing the cohort being too big… which was such a shock. (And that’s not even the worst of it, there’s more context but I’m trying to keep this brief). When I asked my tutor for help (while he was even out of the country!) suddenly she replied MANY times to me, even at a weekend… and still, she didn’t clarify what I was asking about. But she did help me see just how poorly she’d already communicated about it.

In her feedback, I still don’t get where I deviated from what she recommended and why I got a lower mark. I rewatched ALL the lectures, made copious notes especially where she talked about the assessment, went over and over the assessment requirements and had them next to me throughout. She said we could do various things and gave examples, but now I realise she wanted us to do certain things MORE than others. So I paid the price for that. 🤷 Apparently, I should have regurgitated the lectures more, not assimilate the lecture content and take it one step further and do something novel… as she suggested we could.

I’m okay with the outcome. It was a presentation after all and I have promised myself I’ll never force myself to do them again as they cost me a massive amount in health.

I just hate when it seems so EASY and simple to clarify what is required for an assessment, without compromising on the ability to assess a student… yet there’s a refusal to do that without justification… It really sucks. Massively INDIRECT communication and an expectation that we’ll just ‘get it’. This assessment has been the worst for this in my entire degree.

Before anyone says that staff should be better at clear communication, especially with neurodivergent students like me… this professor is also neurodivergent herself, and open about it. Being neurodivergent does NOT automatically make someone better at communicating with other neurodivergent people, though. We are all different. What she kept doing was being absolutely certain, and even proud, she was being “inclusive” without ever actually checking that. A good lesson for me, too, as someone who wants to continue learning about and being inclusive myself. There is no universal inclusive design… you must tailor things to who you are trying to include. There needs to be a constant, open feedback mechanism or communication about whether it’s working (especially because things can change over time).

Anyway… my degree is almost done now. Well, the work IS done, but the wait for final grades continues for at least another month. I won’t settle until I get official confirmation of grades, etc. I’m still so flipping delighted I got this far! (My 4th / 5th attempt… probably only possible due to autism ID and dx thanks to this uni’s help, and subsequent support!)

@actuallyautistic

From: @AnAutieAtUni
https://beige.party/@AnAutieAtUni/112591499477732308

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

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 ,
@AnAutieAtUni@beige.party avatar

@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

AnAutieAtUni , to ActuallyAutistic group
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Update on prepping for my ADHD assessment:

[Update for context: I am autistic, already dx’ed ~3 years ago, there was no option for an ADHD assessment at the same time back then. /]

I thought I had basically done no prep, and hadn’t got any/many useful memories of the past, but over the last few months I’ve been jotting things down in a document that now has many bullet points of info across several pages. I didn’t realise how long it got until I just looked at it. It’s looking a lot more like the notes I made that helped me with my autism assessment. Even though I didn’t actually look at the notes in the assessment, it helped me keep in mind why I was seeking an assessment. I also sent the notes to the autism assessor, who welcomed them and skim-read them for extra info.

I’ve also been watching a few more YouTube videos by a variety of different people about AuDHD experiences, rather than ADHD-only. All I can say is I feel I relate most to AuDHD’ers, rather than only ADHD or only autistic people. I would go as far as saying I relate to 99% of how AuDHD’ers describe their experiences. (I wouldn’t expect to relate so strongly because of all the variation between different people’s experiences!)

I’ve been reluctant to delve into the DSM or ICD… I don’t want to manipulate the outcome of my assessment. But I have now browsed them so I can see it isn’t just about the presence of traits but also their frequency and impact. That’s helped me ponder my experiences now. Not all traits are present, strong or frequent, but many are and it reminded me of when I was first trying to get an ADHD assessment. I’ve had many struggles academically during my current degree but started to normalise them in recent years while waiting for this assessment (~3 years ish). (I’ve started to assume that everyone experiences what I do - easy to do that when you study alone and have no options to mingle with other students.) I almost forgot that an ADHD specialist study skills staff member sent me some tools and techniques at the time that are specifically designed to help ADHD challenges and they really helped.

My weakest form of communication is live, spoken conversation. I forget things, even obvious, important things. I’m very slow to process spoken words and sounds, generally (auditory processing disorder seems to be behind it having chatted with some other autistics who experience the same). Whenever I’ve relied on my memory working during live conversations and done no prep work beforehand to help me recall relevant things, my brain has failed me. Sometimes in extremely important situations when I had just 1 or 2 important points to share, and really thought I’d remember, but absolutely failed to share them in the conversation and worse is that I didn’t realise until well after it happened and it was too late. I guess when your processing has a bottleneck, just like with sensory processing disorder, you simply don’t have access to other mental faculties as usual.

So, it’s a balance between prepping enough to ensure I’ve got some memory of my present and past experiences related to ADHD and know why I’ve waited years to have this assessment (this will alleviate some processing demands), and not prep so much that I’m biasing my answers, and influencing the outcome of the assessment.

Then again, imposter syndrome…. I know that ALL too well.

I still welcome any advice or reassurances about ADHD assessments. It is scheduled within the coming days.

@actuallyadhd @actuallyautistic

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

Does anyone have any tips for how to prepare for an ADHD assessment?!

I truly don’t know if I have ADHD or not and want to do what I can to put forward whatever information might be useful for the clinician to get a full picture and come to an accurate conclusion.

I’m really worried that I don’t remember a lot from my childhood, though, especially due to major events in childhood, and that I’m a very heavy masker, even to myself.

I seem to fit AuDHD types the best, which makes sense since I know am autistic. But I don’t really know how to identify the ADHD part of me. I keep thinking about stereotypes which are based on males that aren’t usually autistic as well.

I will be happy whatever the conclusion is from my assessment, whether I have ADHD or not, but ONLY if I’ve done my best to give important information. I would hate it if I came away remembering important things after the assessment is done, especially if it swayed the conclusion one way or another.

@actuallyadhd

AnAutieAtUni OP ,
@AnAutieAtUni@beige.party avatar

@Uselessgeneration That’s great you had those! I don’t have my school reports - got rid of them. They mostly said I should raise my hand and interact more in class… but I was always so overwhelmed (autistic overstimulation type stuff) or dealing with events at home, bullying at school… so… 🤷

At university now, my tutor called me “hugely enthusiastic” before he even met me… seems like a potential hyperfocus ADHD trait in me being seen! I DO get so excited about stuff I’m interested in!

I did have a loved one full something in but he hasn’t known me for that long, and not sure it helped to be honest. He is a classic male ADHD type who doesn’t really think there’s a need for labels. He didn’t see many traits in me, and I agree that I’m not the same as him. But I’m cis female and autistic (he isn’t autistic). I notice we have some similar traits that could be ADHD but he thinks are “normal” human traits (I know they’re technically both, but…)… and I’m learning more and more that AuDHD (autism + ADHD) is quite different to ADHD only. AND there’s a difference between genders. (Don’t even get me started on masking… haha!)

@actuallyautistic @actuallyadhd

Zumbador , to ActuallyAutistic group
@Zumbador@mefi.social avatar

@actuallyautistic

Here's something that causes friction between me and my family.

Someone asks me to make a decision about something I don't have a strong preference, but they want me to have a preference.

"do you want x or y? "

Saying "I don't care" comes across as rude, and even softening it as "I don't really have a preference" or turning it back to them by saying "what do you think?" isn't appreciated. They want me to care.

I understand that they want me to choose so they don't have to do that emotional labour. That's fair. But often when I do choose (at random), they try to change my mind, and then I'm back to square one because I don't really care, and I don't want to lie!

A honest answer would be "I'm depressed, I don't want to exist. Putting on a polite face is taking up all my effort, expecting me to actually care is beyond my capacity"

But that's too heavy for most interactions.

I'm not sure what I'm asking for here, just writing it out.

AnAutieAtUni ,
@AnAutieAtUni@beige.party avatar

@Zumbador @actuallyautistic Agreeing with your post and so many other commenters experiences too!

I am frequently on either side of this.

Sometimes I’ll say “I don’t mind which. You choose.” And that can cause a problem for another person, depending on who they are. I think I’ve figured out why, though, for one person: they are so worried about picking the “wrong” thing themselves. They are actually a heavy masker and people-pleaser, both of which are about doing what others would prefer they do. So to make them choose for me is a VERY scary proposition. There is never enough reassurance that I could give them that could help them past that. On the outside it could look like a battle of “no, you choose! I don’t mind!” To each other. This person cannot tell me that they cannot choose, because that is too scary for them and would also be perceived as “wrong” for them, but I am trying to encourage them to do that and feel safe saying it… BUT it isn’t actually that they “don’t mind”. I’m not sure they even know what they want when they’re around anyone human being…

When I’m on the other side, I am either:

  • Genuinely cannot choose. My mind is in paralysis between choices and I need help. If I recognise this is the case then I’ll state it plainly, so it’s a request for help, not asking for someone’s preferences. But I might not realise, especially if I’ve got brain fog. This usually happens when I’m making trivial decisions.

  • Or I could be like the person I mentioned above and terrified of making the “wrong” choice for someone else. Especially because I might choose something that they didn’t realise was part of the options… a very ‘divergent’ choice, that could surprise them and cause problems for us both.

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