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AnAutieAtUni

@AnAutieAtUni@neurodifferent.me

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

I’m 40 years old. 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
@AnAutieAtUni@neurodifferent.me avatar

Dear Brain,

Please accept this attached boatload of information and store it for at least 2 weeks. I know it isn’t relevant right now, I know it’s out of context, I know the only purpose is for a silly exam that we don’t even believe in being an assessment type… but please… 🙏 Oh and please develop complex connections between each data node for “integration of knowledge”, etc etc.

DO NOT under any circumstances create space for this information by deleting the crucial package, EssayWritingUnderTimePressure. Nor the library, Words. In fact, do not touch the entire Language hub. Except maybe UselessFactsAtDumbTimes. That can go. Actually, that would free up a LOT of space! Do that.

Mine sincerely,
Me.

@actuallyautistic

alexisbushnell , to ActuallyAutistic group
@alexisbushnell@toot.wales avatar

I am so bad at weekends and now my work week is settling into a routine thanks to my VA, the weekend issue is getting worse.

Like I desperately need every day to be the same or for "different" days to be planned well in advance so I know what to expect when they arrive. And I have no idea how to do that with weekends because they involve other people and weather and stuff I can't control.

@actuallyautistic

AnAutieAtUni ,
@AnAutieAtUni@neurodifferent.me avatar

@alexisbushnell @actuallyautistic Oof yes, this is a biggie for me. The relief and relaxation of weekday routines means weekends, especially Saturdays, are mega stressful.

I would really like a solution to this. It’s quite a high priority for similar reasons to you - it involves other people.

All I know how to do now is to ask about the weekend (especially Saturday) plans the day before. But even then, anything could happen.

I try to keep my own thread of something I do every day to I feel like every day is similar - but right now that’s uni work, and that’s all going to end at the end of this month! Trying to plan my next short/medium-term projects so so can continue, but doubt I’ll be as consistent.

AnAutieAtUni , to actuallyadhd group
@AnAutieAtUni@neurodifferent.me avatar

This is a little long. It’s a blend of topics from ADHD to ME/CFS to my autistic special interest. Big, self-realisations.

Been avoiding tagging groups because I don’t want my sad vibes to be amplified to many people… But I’ve been really struggling lately. I’m hoping it’s short-term. Hit a low yesterday but came away with many insights that could help me. Maybe sharing these will help others too, or at least know you’re not alone.

I’ve been prepping for my ADHD assessment for months by jotting down anything I can remember from my life to date that might be useful. Especially from my childhood.

In addition to that, I found myself unexpectedly interested in a tiny thread of exploration in my life long special interest (horses) that has been mostly dormant for 2+ decades now.

Also been trying to keep active because it’s the flip side of ‘pacing’ for ME/CFS for me. I need to resist overdoing it (pace), but also resist under-doing it and becoming sedentary (easy habit when revising for an exam and it feels like it’s The Most Important Thing).

Well… those 3 things all came to a head yesterday and crashed together in one great big collision:

I had a crash day (post exertional malaise from ME/CFS), which was due to me absolutely pushing my limits the day before (i.e. NOT pacing), and crash days normally get easier for me as the day progresses, but…

I started researching my special interest with a loved one… horses… and specifically started looking into mustangs that are icons in the USA for (supposedly, debatable today) being wild and free… which the Mustang car brand picked up on…

I also wanted to have a little sugary treat in the evening, which I know I should never do on a crash day, no matter what, but I’ve been so tired of limiting myself and my joys lately, was pushing my limits again…

And…

When I got up to go to bed in the evening I felt absolutely awful. The crash felt worse than ever, which is very out of character. I had asthma, which was also out of character as that rarely does anything these days (easy to avoid my triggers). Anyway… then came this HUGE wave of both ‘remembering’ and grief.

I remembered WHY my lifelong special interest is horses, and especially why they helped me at a young age. I remembered why mustangs appealed… it’s all about being WILD AND FREE.

Nothing beats galloping on horseback across meadows and open landscapes… when you’re living through the experience of your horse, feeling his/her senses… and your own… wind rushing past you… rhythmic hoof beats beneath you… the exhilaration of exploring the world at wild high speeds… together… not alone...

No wonder I find it hard to look at horse things and allow myself to FEEL anymore. I lost my horse when my parents divorced, and the family dog too - both were my lifelines and I often said I was only living because of them. (Much due to isolating autistic struggles as a teen, plus immensely difficult home life due to impending divorce). Then when ME/CFS first hit me just a few years later, I have never been able to be FREE again. If I let myself be free, I get horrendous consequences that I wouldn’t want my worst enemy to experience… and they last so much longer than the duration of the freedom. 5 minutes of free movement? 1-2 days of deep sickness where I depend on a loved one for all the little things that dignity is made up of, put strain on our connection, and question deeply what use I am to this world.

The tears flowed and flowed last night.

I used to be driven so much more by PHYSICAL experiences. True, immersive kinaesthetic explorations of the world. These things are still part of me now. But since I was 26 years old (when I got ME/CFS) I have had to suppress them. It’s like turning off a light inside me. It’s actually like closing a door on my own self.

If I do have ADHD, there’s a possible link. The best days were spending all day outdoors with a horse or dog or just in nature, not worrying about food or water. I’d be active and exploring all day long. I’d come home muddy and stinky with scratches from brambles all over me and yet glowing with contentment for having explored the world fully. It was always animals and nature, and it was always free wandering. If I had the family dog with me, he would help me explore. If I was on my horse, he would. It felt like both kept me safe (from people). I felt connected to my soul.

So grateful I experienced those things.
Yet also (not mutually exclusive) it’s desperately painful to have to remember them and have to turn away from that place where my spirit lives now. Maybe one day, after these 14-15 years of sickness, I’ll be well enough to live without limits again. I just can’t see it. I’ve tried more strategies to get there than the average person is even aware exists. I MUST accept the gift of my present, the present day, the abilities I still have right now. Pacing is how I claim today’s gifts. Living without limits is how I slide quickly back to moderate-severe ME/CFS and become housebound or bedbound again. I CANNOT let that happen. I would be throwing away all my todays.

@actuallyadhd @actuallyautistic @mecfs

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

Suddenly running out of food, especially when it’s food that serves many purposes: safe food, same food, and supports health amidst chronic illness… is probably the worst thing. Immediate meltdown.

Especially when you find out right before a meal time. And that’s right when the consequences of insomnia, nightmares, anxiety and PEM have been kicking in.

Loved one helped, but I hate that I was utterly dependent on them. I was ready to go without eating and spiral into despair. I’ve had to do that many times before, especially when ME/CFS was much worse and there was no respite between flare-ups. I didn’t have a loved one around who could help back then. It’s certainly not always a guarantee that I’ll have support even now if loved one is around (they get busy, they have their own life, they can simply say no, not be in the mood…).

Second meltdown in a few days. I really need to get a handle on this somehow.

One of the things driving some of this stress is I can’t “see” the end of chunks of work. I might know what to do, but I have no idea how long it’ll take and don’t have a sense of how far things are progressing until I am right at the end of it. I’ve just switched to exam revision and you bet I cannot see the end of it right now, despite technically knowing what to revise and having a rough revision plan. Some topics I know well, others are massive topics that need time. I can’t see all that in advance. I tried to plan all that for exam revision once but just ended up losing entire days to the planning process. I don’t have that much time. I will be using study skills like prioritising but until I’m at the end of my exam, I won’t know if I’ve achieved much at all.

When you can’t “see” the end of a project, it’s metaphorically like all you can see is a huge mountain as a whole before you start to climb it… with about as much detail as this little mountain emoji: 🏔️. Then the minute you get closer to the mountain and expect to see the details and find a path to climb it, you are shrouded in dense, zero-visibility fog. Once in it, you have to keep moving forward and up and over, but you never know if you’ll get over the mountain or which day you’ll even complete it. You only find that out when you have a few meters left of descent on the other side.

I truly don’t know how I’d have managed this degree without knowing I’m autistic. I would still be beating myself (more) up in addition to the challenges because I would be believing that I’m choosing to make things harder for myself. I won’t stop looking for better strategies, but the self-blame and shame tactics don’t help one bit.

@actuallyautistic

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

@actuallyautistic
@actuallyadhd

After joining a post by Niamh Garvey (hopefully a successful link to it below) about whether she had adhd as well as autism, I have spent the last couple of days contemplating this idea for myself as well.

I am still not entirely convinced, but I am beginning to suspect that I might well be in this situation as well. After watching a number of YouTube videos from those with both autism and adhd and reading up on adhd, I can see a number of things that point on that direction certainly, although I'm not entirely convinced.

I have always been aware of the near overwhelming urge to either interrupt people, because there is something I want to say and if I don't then, then I know there is a more than a reasonable chance that I will forget what it was. I also have a tendency to want to finish people's sentences. Both of these things though I have taught myself to resist. Even though I feel a great deal of discomfort doing so. I am also more than aware that I can forget what I was saying, or thinking, halfway through a sentence. That digging through the trash to find the package with the instructions on, that I only just threw away after reading, is not uncommon. As is failing completely to understand or remember the instructions someone just gave me.

But then, my short term (working) memory is basically non-existent. But, I'm also aware that this is a fairly common problem for autistics and even before I realised I was autistic, I built up systems to help myself deal with this. As well as with my general forgetfulness. Lists, memory aids, even making the route out of my flat a trip hazard to make sure I don't forget to take something with me. Also, I live alone and essentially there is a place for everything and everything has its place. Not foolproof and I have lost things in a very small flat that I still haven't found. But generally speaking effective.

I struggle to start tasks, especially tasks that I have no real interest, or desire to do. Being interested in something has always been my main motivator. But eventually, I can normally force myself and work my way through things, especially if I know they are necessary. Knowing I have this problem is also why I hate leaving things to the last moment. I know that I am more than capable of doing that if I allow myself, but also that the stress from doing so is nearly overwhelming, even if it can be motivational. As is the stress of clutter. Not the organised clutter that is my flat, where I know where everything is, as in somewhere in that pile over there, but the clutter that builds up eventually and begins to feel as if it is out of control.

Novelty is a factor in my life. Or, boredom, rather. Because sooner, although far more likely later, I will grow bored with routines, or things like safe foods, and need to change them. Many of my interests also seem to suffer from a similar threshold. A certain point where I lose interest and no longer feel any need to maintain them, even though this might make me feel guilty about giving up on them. In fact, I hate boredom and I have always needed a certain amount of new things to watch, or discover and to be actively doing stuff, if only in my head. And whilst I have never thought of myself as being particularly spontaneous or impulsive. I am, within certain limits of self-control. There is a rationality that often has to be appeased that gives me a sense of control. I have also taken stupid risks and great risks. But rarely beyond what I knew was necessary, or to my mind, at least, controlled to a point.

I can be easily distracted, by random thoughts or by, (well obviously not squirrels, I mean who would be? but, oh, oh, there's a butterfly) things. But not always to the point that I'm not at least marginally still aware of what I should be paying attention to. Letting myself wander whilst maintaining at least a marginal awareness is an old trick of mine. I have always been a fidgeter, but that's also how I maintained concentration. Feeling the overwhelming need to move, has always seemed to me to be anxiety driven, or is the way I focus and think. In fact, movement for me has always been as much about settling and regulating myself, as it has been compulsive.

As I said, there are certain things that seem to fit, even if they also seem to have been effected and possibly modified by my autism. I would love to hear your thoughts.

https://beige.party/@niamhgarvey@mastodon.ie/112390279791932822#

AnAutieAtUni ,
@AnAutieAtUni@neurodifferent.me avatar

@pathfinder

This is pretty much where I’m at too!

There are a few outward signs of possible ADHD with me: I can flit from one subject of conversation to another and might derail the conversation that way, or even cut someone off. But it’s pure excitement - the new subject suddenly had this massive draw. I can suggest spontaneous things to do in the moment (while my inner autistic self squirms at what I’m getting myself into).

The trip hazards thing - yes! I do that. Until I get used to the trip hazards. I’ve had to stop for a while because I just ignore them now.

But I also have a place for everything. I rarely lose anything. When I do lose something, I know it’s properly lost. Did that recently. I knew I’d search the house anyway, but never found it.

On the other hand, if I head upstairs to grab something, you can bet when I get there I won’t remember what I’m there for. And/or I’ll see little jobs to do on the way and end up arriving upstairs carrying objects I forgot the purpose for… and basically leaving a trail of half-finished micro-tasks. It helps keep me active (!) but damn, it’s exhausting. But it doesn’t happen every day. Just most days.

I seem to love making friends with people with ADHD. That means any ADHD traits seem normal to me. I wonder if you’ve experienced similar. I wonder if people without ADHD seem too slow for me and don’t seem as excited by life as I am (“how can you not be excited by THIS?!”). Purely hypothesising - I don’t believe I think that way at all, but what I believe about myself and what I do might be different.

I’m an anxious person in social situations, so like you said, I wondered how much of my ADHD traits could be anxiety. It’s an important question as there is masses of crossover with anxiety. But I recently had some time with much lower stress in my life, and I could not sit still, kept doing the same things as I did with anxiety, having the same impulses. I still dream of being able to sit and read a book… any book that I want to read, not just one that has a brief window of hyperfocus… but at least have the hyperfocus last long enough to get me past chapter 1. And it’s exactly the same with writing, which I find so damn hard to do (but once I do it, apparently I do it very well at uni).

I’m still learning what ADHD is myself, so I know I’ve got a lot yet to explore. I still feel I might be ‘borderline’ one way or another. When exploring it, it has helped to remember the 3 types of ADHD: hyperactive, inattentive, and combined (both).

@actuallyautistic @actuallyadhd

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

Doctor suggested I have but I don't think I do because:
I am able to force myself to do things even if I'm not interested in it.
I do not like spontaneity.
When I have a deadline, I cannot leave it to the last minute or anxiety would cripple me.
But I do struggle to pay attention unless am hyperfocused. And I do have executive function challenges. And I have to have a project. And I crave dopamine hits.

Anyone else similar to that?
@actuallyautistic
@actuallyadhd

AnAutieAtUni ,
@AnAutieAtUni@neurodifferent.me avatar

@niamhgarvey

Just to say that, yes, I think I’m similar. I don’t relate as easily to ADHD the way I did when I learned what autism really is.

I decided to go for an ADHD assessment anyway to find out. Maybe I’m borderline, but I want to know. It doesn’t matter which side of the border of dx criteria I get placed, the self knowledge will be invaluable.

I think I have spent a lot of time around stereotypical ADHD males since I was a kid - I’ve always loved that energy and enthusiasm for the world. Maybe it’s because I lack that, or maybe it’s because it’s a mirror for what’s within me. It will certainly be more subtle with me as I know I’m a heavy masker - deep engrained for survival.

@actuallyautistic @actuallyadhd

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

Is it ok that I’m really grumpy today about not being accepted as I am?

I mean, I went to a uni event where there were loads of surplus support staff who are meant to be trained to help people there, identify sunflower lanyards etc. I wore my sunflower lanyard which even has pins stating I have an invisible disability, am neurodivergent and a spoonie…

But still it felt like battling uphill to get help and understanding when I needed it.

Why is it so goddamned hard?!

I am so tired of trying to fit in, but now already tired of feeling like a purple sheep (not even a well-known “black” sheep type, but some other obscure variant that no one understands).

I’m so tired of being alone in this with no one to go through it with.

I’m venting.

I know the Actually Autistic community get this and you’re out there.

I just feel very isolated from the right type of people I need to be around sometimes.

Hoping this is a phase. Hoping it’s just a mix of “oh shit my degree is almost done” and final coursework & exam stresses… and knowing my younger student peer friends couldn’t give a shit that they probably won’t see me ever again and just broke their word about meeting up in April. They will all move away and forget me, I already know that because I already tried uni several times before and experienced it every time. Just so tired of being alone and forgotten.

All these broken promises about caring. It’s hard to take it all on board sometimes.

Vent over.

@actuallyautistic

AnAutieAtUni OP ,
@AnAutieAtUni@neurodifferent.me avatar

A LOT of this is down to the fact I can never tell when someone cares or what they think of me without clear words or actions. I usually have to put a bit of work into interpreting actions.

When people’s words and promises and public guidelines don’t match with their actions it hits hard. I don’t know why they don’t match up. Why didn’t they do what they said? They said they cared, they’d be inclusive, that we are all valued… is that not true?

Until now I’ve always chosen to believe people mean well… always. I can still think of hundreds of ways to forgive people and explain their actions. But I am only just starting to learn to listen to the hurt I experience… I usually silence it by saying “but they didn’t mean to!” Maybe not, but they still did harm.

And some people just don’t think, just don’t care enough. It’s as boring as that. I’m as boring as that.

And I’m back to wishing I didn’t want company or friendship or feelings of belonging! Damn, I wish I could switch all those needs OFF!

@actuallyautistic

AnAutieAtUni OP ,
@AnAutieAtUni@neurodifferent.me avatar

@pathfinder

Thank you 🫂 💛

@actuallyautistic

AnAutieAtUni OP ,
@AnAutieAtUni@neurodifferent.me avatar

Note to self:

Maybe I am STILL opting in to things other people like me are smart enough to avoid completely because they know it’s a really bad fit for us, and that’s why I don’t MEET them!! Oh! 💡

I’m still seeing the world through my mask, still making choices based on my mask; not as the autistic person I am.

@actuallyautistic

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

Just got back from visiting an event at my uni that was held in a building’s atrium.

It was hot, bright, crowded, full of anxious students and just Too Much. I’ve been back an hour and I still haven’t calmed down and got the overload out of my system.

It was just a fraction of the size that my traditional graduation ceremony will be in July. It will be held in a similar but much larger building with many, many more people, masses more sound and noises and movement and chaos.

I’ve never been so relieved to wait 25 years to REJECT a dream: since my teens I dreamed of graduating by walking across a stage… and I’m so fcking relieved to have opted to Graduate In Abstentia. I am a genius. Thank f** for that.

Side note: my university were going to try to hold a quieter version of the traditional graduation event just like the one that made the UK news: Relaxed Graduations at Nottingham Trent University. There was a lot of positive movement in the second half of last year. I heard they’d definitely do it for the winter graduations (just gone), and someone else said they’re definitely doing it this summer. But now, I think they actually haven’t done anything more. So glad I wasn’t waiting and depending on that. I’d be devastated. Many staff also wanted this - many also have disabilities and/or are neurodivergent. So it’s a let-down for everyone.

@actuallyautistic

AnAutieAtUni OP ,
@AnAutieAtUni@neurodifferent.me avatar

@roknrol

Haha yes! My dream really was just having my name called out and then walking across the stage. Cap and gown on too. I hadn’t thought through anything else at all. Had never been to a grad ceremony before OR had the chance for it to become real for me.

@actuallyautistic

AnAutieAtUni OP ,
@AnAutieAtUni@neurodifferent.me avatar

@Walrus

It’s good to hear I’m not alone in this! Do you remember your reasons behind choosing not to go?

I ask because I only relatively recently found out I’m autistic and connected the dots about why I find those environments so hard. If I was the same age as my younger peers, before I knew even what autism really was, I wouldn’t have realised what I was signing up for and would have just followed the crowd like sheep and struggled, maybe even publicly broke down. It would be interesting to hear how you gauged it wasn’t for you! I’m still learning how to recognise potential issues in advance.

@actuallyautistic

AnAutieAtUni OP ,
@AnAutieAtUni@neurodifferent.me avatar

@miaoue

Ah this is awesome! Haha yeah! The vibes you’re sharing (shaking hands with a “fancy so and so”) echo mine, for sure! I was shocked to realise the staff who have been teaching me most probably won’t even be there… they try to avoid it! (Simply because it’s boring, apparently! Not for accessibility reasons in most people’s cases.) So not even a familiar person to shake hands with! 😶

@actuallyautistic

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

I am really loving and connecting with the TV series, Astrid: Murder in Paris.

I’ve only got as far as episode 3 (no spoilers please!) but I’m realising that watching it has rocked me to my core quite a bit.

I’ve never seen someone who is similar in age and challenges to me. Most autistic characters seem to be younger (children, teens, maybe early 20s). Astrid doesn’t seem like she’s in her 40s like me, but I can still relate a lot more than to other characters.

Realised I used to be called [and sometimes quietly refer to myself as] “fragile”. I’m sometimes called “brilliant”, too, which usually sets up great expectations of me in other areas that I fail at meeting in spectacular ways. These words were used to describe Astrid. I am very familiar with the spiky skillset idea, but hearing words that are familiar to me… kinda hits differently? Somehow.

I see how she is more “obviously” autistic than me. I see how she navigates the names she gets called and the way she is treated like she is a child sometimes. I think I’m ready to start facing that kind of discrimination if it means masking less and taking care of myself more. I need to find a way to allow myself to very gradually explore this, while remembering that my masking is deeply engrained and very much automatic, not a conscious choice the vast majority of the time.

One thing I’m exploring is allowing myself to express my troubles without using words. Usually, I will try to keep a neutral exterior and try to calmly say “I am not doing well right now”. But no one is taking that seriously. I usually have to repeat it 3 times and then eventually break down in front of someone before they’ll realise and help in the ways they’ve agreed already they will help me. Quicker help would make a massive difference and make the outcome so much better.

I want to retrain my brain to show my struggles outwardly. I may need to use words, too, but I’m hoping even allistic and neurotypicals who know and care about me will learn the visible signs that I’m struggling and if I go non-speaking or shutdown completely, then hopefully there will be some sort of support or recognition of what’s happening.

@actuallyautistic

AnAutieAtUni OP ,
@AnAutieAtUni@neurodifferent.me avatar

@alexisbushnell

If you’re struggling to find the show it’s on Channel 4’s app!

Communication cards - not really, but tried a traffic light card once. I prepped the card (double sided: just red and amber, was only going to show it when I’m not ‘green’) and never used it as I was too self conscious. Was a good thing in the end - I ended up being a target in that particular group anyway.

But I like communication apps. I’ve got Emergency Chat and FlipWriter. Again, not had a chance to use them except for with one loved, but I like the fact I can customise the messages versus static cards. Emergency Chat has a default opening message you can customise which helps massively.

I got a wrist band which can turn inside out depending on whether I’m ok or not, but again, I feel too self conscious to wear it.

Part of the problem is that I’ve never met another adult who has these challenges and uses these support tools. Being the only one or first person feels like putting a target on my back 🎯

@innervisioner @actuallyautistic

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

@actuallyautistic

No matter how well I learnt to mask, no matter how well I learnt to get on with people, if not in any deep and meaningful way, at least superficially. There has always been one skill that I have never mastered and that is simply the ability to not upset people and especially without having the slightest idea how.

Or that I didn't for a long time, anyway. It was only when I realised that I was autistic and that the way I looked at the world was in some ways substantively different from the way many allistics looked at the world, that I began to understand something. Allistics tend to find validation externally, through feedback from the group or the part of society that they identify with, whereas autistics tend to find it within themselves, in their own reason and sense of worth and value.

Now I must stress that in many respects this is a generalisation and obviously there will be a lot of variation and degree in how true this is. But in its more extreme forms, it could very well explain many of the experiences and difficulties that I've had.

Because if someone's self-worth, the value they see in their life and actions, is almost entirely based on their interactions with the dynamics of the group they identify with, or the society they live within and not from their own judgement, then this could lead to certain choices and reactions that are quite frankly alien to someone like me and that I could easily end up in conflict with and all without really trying to.

For example, if the value of a child reflects back on its parents. Then in the extreme case the values and behaviour expected from that child, are not those of the child, but of the parents in terms of the group the child is meant to be representing them in and how well it is doing that. So any sense of divergence from that or criticism of that child, no matter how slight that might be, could easily be seen as an attack on the parents and reacted to accordingly, irrespective of how reasonable or just it was.

Equally, of course, worth, praise, or rewards, can also become divorced from any sense of reality. All that matters is that you, whether that's through your children or not, are being valued, not whether there is any justice to it. Because the truth or validity of it, is not based on how you see yourself, but only on how others see you. And in the extreme case, it doesn't even matter how they came to this view, as long as they have it. So worth can become something to be manipulated and played for and how you really are and how you actually feel about yourself becomes almost irrelevant to this process.

That people could even be this way, that everything could become how you're being perceived and anything that effects that negatively can be something to be attacked, is still something that I struggle to understand. It is so foreign to my nature. But, it certainly explains so many of the times that I've upset people, because I wasn't playing this game, or seeing the world the way I should and didn't even realise it.


AnAutieAtUni ,
@AnAutieAtUni@neurodifferent.me avatar

@pathfinder

Thank you for sharing this! Really fascinating to think about and I’m going to explore where I stand on this too.

I am about to officially decline the chance to go to my own graduation ceremony in a few months. I’m actually quite shocked.

I think I have usually sought external validation and continue to do so on some levels, but as I realise how much harm it causes me, I’m switching to external validation and hope to switch 100%.

I’m at a point in my degree where I’ve already had so many grades back that I feel validated. I have a mentor and 2 people close to me who have an idea what I’ve been through to get here, and possibly a few staff at uni too. When I complete my degree, I’ll have a certificate to prove it, but more importantly, I already know how much I’ve changed and grown from this journey.

But most others around me are shocked that I don’t want to:

  • Get overloaded in absolutely massive over-excited crowds before and after an event
  • Put on a cap and gown last minute with no time to get used to it
  • Be under massive social pressure to smile and socialise for several hours
  • Always look my best for the cameras (no sincere expressions unless they’re jubilant)
  • Get overloaded by echoes and sounds in a sports hall
  • Sit and try to stop my fidgeting for the duration of the ceremony with hundreds of people around me
  • Be so overwhelmed by the pressure to queue and walk across a stage and shake a hand and deal with multiple clapping sessions that I end up dissociating and don’t remember anything anyway
  • Come home and let it all out via a melt down and then get told off because “that isn’t how you’re supposed to enjoy your graduation day! You should be happy! You’ve ruined it all!”

Yeah…. External “validation” can be utter hell.

Very glad to be switching to internal.

Especially, as you said, I value things differently to others. For me, it’s more about the internal values, ethics and goals that guide me, and about the real journey I’ve been on, about becoming the person I want to become… much less about people clapping and making me centre of attention and expecting me to perform for them accordingly. So much pressure on one single day and so little attention paid to the past 4-ish year journey I will have been on.

BUT I have a lot of respect for people who feel their values and goals align with ceremonies like this. I do enjoy ceremonies in general, the idea of them is beautiful and full of respect and meaning. But this particular one is absolutely not ‘me’. I have got my own plans to create my own ceremony. Small, intimate, with freedom for all to ‘be’ and breathe. I’ve taken the symbols of a traditional graduation ceremony as ingredients and turned them into a new recipe that will work much better for me. I just need to keep bracing for the ongoing onslaught of Opinions that I’m Missing Out. rolls eyes

@actuallyautistic

AnAutieAtUni ,
@AnAutieAtUni@neurodifferent.me avatar

@pathfinder

Yet, I’m looking at my reply and see the thing that’s missing:

Am I validating others in the ways they want and need? Ooof not sure I would even know.

I do make continual efforts to say out loud things that others don’t usually like “thank you for …”, “I really appreciate that you did… X”.

But do I recognise their achievements? In the way that they need?

Maybe not. Maybe I just can’t relate? Maybe saying “well done” in some obvious situations just seems so trite and superficial to me that I avoid it? And maybe I DO say it but only when others feel it’s not necessary. Hmmm. 🤔 Lots to ponder, thank you for this.

@actuallyautistic

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

Skincare product instructions for the face:

“Pat a small amount onto the eye area”

Um. Onto? REALLY?!

(No, I refuse to put a skincare product on my eye…. Even though that’s technically what it says. Eyes are in eye areas, right?! But I still want to know what is classed as “eye area”. Below the eye? Eye lids? Above the eye but under the eyebrow? Eyebrow itself? What about either side? Does anyone even know?)

@actuallyautistic

AnAutieAtUni OP ,
@AnAutieAtUni@neurodifferent.me avatar

@melindrea Haha yes, exactly. Since I bought this product for the areas around my eyes I have a good idea what it’s meant for.

But why no diagram? Why “onto”. Skincare and beauty tends to be full of language like this and I just can’t translate it. I applaud those who can!

Would be interesting to see how the directions might be written if this was a medical product instead. They would have to be so much clearer! Don’t think they could get away with that phrase.

@actuallyautistic

AnAutieAtUni , to actuallyadhd group
@AnAutieAtUni@neurodifferent.me avatar

Question for AuDHD folk:

Do you find that novelty can help you do something new that otherwise you wouldn’t do due to its challenging nature?

I.e. sensory and social overload is averted, at least while something is classed as “novel”, because the buzz that comes from doing something novel keeps you going.

I ask because I’m wondering if the thrill of novelty where I simply love exploring and experiencing new things is what is helping me keep going in life. Without it, most of these new situations (and older similar ones) would simply not appeal to me at all due to the way they challenge me on an autistic level. I would probably end up in burn out. And even the novel situations take a huge amount out of me, but at least I feel happy/ier about it?

Later this year I have my ADHD assessment and I want to see if this resonates with others that identify as both autistic and ADHD. Alternatively, it could just be that I like novel things but if so, that really goes against my autistic tendencies - I function best day-to-day when in familiar, predictable situations. The opposite of novel! So it’s very strange to crave the opposite, even when it costs so much.

Hope this makes sense, but please do ask me clarifying questions if not. 💛

@actuallyautistic @actuallyadhd

AnAutieAtUni OP ,
@AnAutieAtUni@neurodifferent.me avatar

@ideogram

Yes - these are the same questions I’m asking myself! I did lots of solo travel, too. I literally had to create a log of all the crazy things I’ve done so I can remember them all because most people’s jaws drop when I tell them about just a few… I am certainly driven by excitement! Ok, so having ME/CFS has put a massive dampener on acting on that… but the impulses never stopped.

@actuallyautistic @actuallyadhd

AnAutieAtUni OP ,
@AnAutieAtUni@neurodifferent.me avatar

@CynAq @actuallyautistic

This makes so much sense to me!

I used to be called a Contradiction because of this internal battle of wills (and needs).

Hope you can exit this burnout cycle soon 💗

@actuallyadhd

AnAutieAtUni OP ,
@AnAutieAtUni@neurodifferent.me avatar

@lifewithtrees

This is such a great description and example! I definitely know what you mean

And I love your profile photo - that’s spot-on, too!

@CynAq @actuallyautistic @actuallyadhd

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

I would like a break from nightmares that offer up my daytime reality as metaphors. Oh, and then don’t quite stop when I wake up, just in case I missed experiencing that as reality in my waking life. The theme was inaccessibility and others not taking my accessibility needs seriously or caring about leaving me alone in unsafe situations.

😶

Managed to get out of the fight-and-flight mode I woke up with. But still feeling off-balance on the inside. Need to focus on finishing a piece of coursework today if possible. Which happens to involve recording myself presenting… but I woke up non-speaking and am only semi-speaking right now. Damnit. Will need to speak for 10 minutes straight … probably several times over until I do it smoothly.

Today could be a bit of a slog! Really ready to be done with this piece of coursework though! So determined!!!

@actuallyautistic

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

The more I read and learn about ABA the more it sincerely seems like I was subjected to it in secret by one parent. An autistic parent.

I remember seeing child psychology books on the bookshelf when I was young, but by the time I was old enough to develop a curiosity about them they had vanished.

It’s possible this parent didn’t really know what they were doing, but thought they were “helping”. But what if they realised I might be autistic all along? I doubt it, but…

[For those who don’t know, my family do not know I discovered I’m autistic recently. They are not safe people to open up to.]

How the flip am I supposed to peel back those layers of trauma masking within my one lifetime?

Any other autistics suspect similar for you? Or feel like you had an ABA “style” (i.e. not official, as far as you know) upbringing?

Wish I knew how to tackle this.

@actuallyautistic

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

I’m excited about this book!

“A deaf Snow White, a blind Cinderella, a neurodivergent ugly duckling and a wheelchair-using Rapunzel: classic European fairytales have been reimagined in a new anthropology of stories written by south Asian women with disabilities.”

It’s called And They Lived … Ever After and it’s a collaboration by an amazing sounding charity in India called Rising Flame.

@actuallyautistic

https://www.theguardian.com/global-development/2024/apr/25/disabilities-women-rapunzel-fairytales-india

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

Absolutely craving finding a local group of autistics to meet up as friends.

Yes, I’ve searched and searched. The nearest is quite far and in a busy city centre area that I don’t feel safe going to on my own. I’d also likely get overloaded just from the journeys there and back. Catch 22: Need an autistic friend to help me make autistic friends…

I’m hoping one day to stumble across more accessible in-person meet up groups. I keep searching and hoping.

I don’t have the health/spoons to set up my own, but I wish I did. It would be something like a board game group in a village location where there’s a carpeted room for good acoustics, good toilets and kitchenette-type facilities. Plenty of space to come and go for everyone. Again, I’d do this if I had an autistic friend or 3 who could help me. Solo would be a massive task.

Not giving up on any of the above ideas, though. Just no solutions yet.

(Note: I’m semi-anonymous here so won’t share my exact location beyond ‘England, UK’. That’s because my family aren’t likely to be kind to me if they know I’m autistic. It’s complicated. Same with acquaintances who I currently depend on for limited human contact. I’m not in a position to be able to be openly autistic right now, but I still hope it’ll be possible one day. Organising a local group would obviously mean I’d be openly disclosing to anyone who finds out about the group and sees me named as organiser or meets me there. I won’t lie and deny I’m autistic once discovered, but also probably wouldn’t cope if the ‘wrong’ people found out.)

@actuallyautistic

AnAutieAtUni OP ,
@AnAutieAtUni@neurodifferent.me avatar

@pathfinder

Sad to hear that. I wonder if there’s a way to discover even 1 or 2 other adult autistics who might be interested… could help start something. This is what I’m hoping for at the mo. Or moving house! 😄

@actuallyautistic

AnAutieAtUni OP ,
@AnAutieAtUni@neurodifferent.me avatar

@dyani

Yes! It’s really tough to know how to get started at all.

I used to host a tiny group meet up - just 3 other people. They came to my house most of the time as I lived alone so had an always-available little place. It was so tough when I had an ME/CFS flare up day, or struggled with the social side of how to host. They didn’t really help or empathise. I wanted to be reliable and consistent, be a good host etc. It was stressful and draining, and took more from me than I got.

It wasn’t an autistic group, though, as I didn’t realise I was autistic then. Group disbanded due to many other issues anyway. It was a relief to be honest!

Still not sure I could do that again. I need flexibility to not have to show up every single time if I’m unwell, let alone not have to host at my home. Co-organising at a neutral, public place has to be the way forward to spread the load.

@actuallyautistic

AnAutieAtUni OP ,
@AnAutieAtUni@neurodifferent.me avatar

@arisummerland

Thank you 🙏 Really happy to hear you have a couple of friends like that! They sound awesome and amazing to be able to chat with.

My new student friends at university are pretty much all autistic or have a sibling who is, but most are only just realising they’re autistic, too. Unfortunately, I don’t have actual friends, certainly no one I see more than about twice a year for superficial chit-chat. No one I could turn to and depend upon. I thought I did, but I keep finding out the hard way that people don’t treat me how I treat them as true friends.

The students are nearly 20 years younger than me and treat me differently, too, sometimes leaving me out of social or study plans semi-unintentionally (they assume I wouldn’t enjoy it because I’m so much older). Things were great when we studied together directly, but I’ve been forgotten pretty quickly now that’s over and there’s no direct reason to meet up.

I think a really good step for me would be to go to a regular group meet up for autistics. I wouldn’t be going expecting friendships, just company with people who ‘get me’. It would be enough.

@actuallyautistic

AnAutieAtUni OP ,
@AnAutieAtUni@neurodifferent.me avatar

@dyani

Yeah, I’ve wondered that. My local (city) autistic group say they have online socials but there’s nothing planned for the foreseeable, which is sad. I’d definitely be up for joining an online group.

@actuallyautistic

AnAutieAtUni OP ,
@AnAutieAtUni@neurodifferent.me avatar

@autoperipatetikos

That’s really good to hear. Yeah, the questionable organisers can make it feel a bit weird, but if it’s a really valuable thing they’ve helped organise like that I would certainly go. It sounds really good.

@actuallyautistic

AnAutieAtUni OP ,
@AnAutieAtUni@neurodifferent.me avatar

@JoBlakely

Haha yeah, the actually going bit is not easy!!

@actuallyautistic

AnAutieAtUni OP ,
@AnAutieAtUni@neurodifferent.me avatar

@sejarnold @dyani @actuallyautistic Really cool to hear this, thanks!

I no longer have any Facebook account, but if it came to it, I’d make one just for something like that. It’s just my headspace is so much better now I’m off Facebook, Instagram and Twitter.

AnAutieAtUni OP ,
@AnAutieAtUni@neurodifferent.me avatar

@autoperipatetikos

I’ve searched everything that I can think of, independent and charity-led or government-backed type things. I’m sure I’m not aware of everything there is, though.

I see things for learning disabled from official orgs, but local autism charity org run by autistics is meant to be “the” one for autistic (non-LD) meet ups, but they hardly have anything. The fact they exist might stop other orgs from offering alternatives.

One possibility, if I go through the hurdles of yet another GP appointment, they may be able to refer me to the local NHS autism service that could let me tap into their post-diagnosis support. Assuming they have it. I’ve heard they may even do occupational therapy appointments for newly-dx’ed. But they may also exclude those with private dx, and require another assessment… I hope not but it’s possible.

I had to use my student loan to pay for a private assessment, and I didn’t have options for any post-dx support or networks. GP got sent my new dx but nothing happened automatically. Everything is gate-kept by GP referral and even making a GP appointment is an absolute nightmare for me. It all feels impossible sometimes.

@actuallyautistic

AnAutieAtUni OP ,
@AnAutieAtUni@neurodifferent.me avatar

Some really great ideas in the replies in this thread for how to meet other autistics! 👆 Thanks everyone.

I’ve tried most approaches - almost always getting stuck at the point where the meet up is in a busy city centre (see my original post). I haven’t been to my local city centre in a year or so… no need, thank goodness.

City centres are full of busy-ness, massive overwhelm and un-safety (too many awful experiences to count). I’m NOT street smart, I’m too trusting. An evening meet up in a city centre is just too darned hazardous to contemplate… unless I had an autistic friend to go with me (I don’t). I also get flare-ups of ME/CFS when out in evenings after dinner. I need a long wind down time in evenings just to get barely enough sleep. Routine timings are key, too. If I miss those, I’m wide awake and then wake up unwell the next day. It’s worth it for special occasions, but regularly would gradually reduce my health baseline and affect my entire life.

Other meet ups? I joined a few in my village and they were full of retirement age folk. I don’t mind that, but I wasn’t treated as an equal. Tried a small photography group where there was even politics about image quality! Not very accessible if you can’t afford a good camera. Right now I don’t have time or passion for much photography, too. Very hard to talk to people when you’re supposed to love the thing you’re meeting up about and you simply don’t… really… 🤷

Another issue with village groups is that most are not as passive as board games. Any chances meeting to other people is crammed into the beginning and end before you’re ushered to a seat to listen to a speaker or supposed to be doing an exercise (e.g. yoga class).

A walking / hiking group would have been great if I didn’t have ME/CFS. All the groups around here have older people who march off at an astounding pace and keep it up for hours! I’m happy for them and wish that could be me. If there’s a cure for ME/CFS one day that WILL be me!! For sure!

I would also join a local conservation group to volunteer at nature reserves if I had the physical health and stamina.

I am hoping for a dog one day, then maybe I have an excuse to chat to other dog walkers at the very least. But then, sometimes I just want to walk without seeing a soul or being perceived, so getting to know other walkers means adding social pressures day-to-day when I get out to unwind. Hmm pros and cons. IF they’re understanding, then that’s fine, but that’s rare. A lot of it is to do with my heavy masking which I desperately want to be free of but am also terrified of losing (see my previous posts about masking from the last 1-2 weeks).

I’m hoping to find an opportunity to get to a board game cafe in the city eventually. It’s about the only thing that feels ‘okay’. Maybe they’ll have something in an afternoon. It’s still the city, but at least the entire venue itself is catered toward a certain type of folk! Maybe I’ll end up being the oldest by a mile like I am at my university’s autism group… but I’d take that over nothing. Autistics generally seem more likely to treat each other like equals, which I love and am passionate about.

Not giving up on other ideas…. It’s just most of them require knowing other autistics locally FIRST! 🫠

Truly dreaming of a calm village meet up group one day. Would be amazing. No sirens and constant loud traffic, no public transport or parking chaos, plenty of nature around… So much easier health-wise to get there and back, so I’d be more likely to be able to go regularly, which tends to be key for getting to know people properly.

@Tarrenvane @roknrol @juliasnz @autoperipatetikos @actuallyautistic

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

Heads up about my username changing:

A little later this year I’ll be turning 41. That means my username is no longer accurate. So I’ll probably shift towards using the initials “JB”. JB is quite short so I might add a bit on the end. Not sure what, yet, though!

I added my age to my username because I used to get lots of condescending replies when people saw my handle and previous username that spelled out “An Autie at Uni”. Everyone assumed I was 18-22 years old or so.

Yeah. I’m not. And this is NOT my first go at uni!

It certainly highlighted how people can be prejudice against age, though… It got me reflecting on my own internal age biases and how this might manifest around the younger students. I have lots of bias that goes against myself as a very mature student (fun fact: most mature students are still in their 20s). But I’ve always been passionate about helping to create a culture with my fellow students where we have a level playing field and I’m not seen as an automatic authority figure. This works best with neurodivergent students, but less so with neurotypical. The latter ranged from freezing in terror at my presence in group work (I gently encouraged them to open up, showed them their views and contributions are just as valuable as any of ours)… to me being picked on by younger students, excluded, witnessing them cheating behind my back and then having to handle the delicate art of reporting my own group for plagiarism… while the staff doubted ME as the autistic one, not them. Hmm. Fun. 😶

Anyway, long story short: my username will change, but I’ll be a student for a while yet, so I want to continue avoiding attracting condescending replies (which even the younger students don’t deserve, btw.)

@actuallyautistic

AnAutieAtUni OP ,
@AnAutieAtUni@neurodifferent.me avatar

@roknrol @actuallyautistic Haha!! An Uncle at Uni

Creepy hahaha!! 🤣🤣🤣

AnAutieAtUni OP ,
@AnAutieAtUni@neurodifferent.me avatar

@pete @roknrol @actuallyautistic Ucle, Aucle, Unclie?! Haha!

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

Trying to come to terms with the idea I may have both ADHD and Auditory Processing Disorder.

The latter (APD) I know, but won’t ever get formally assessed because there really is zero benefit to it. I had loads of ear infections as a kid, which is a known risk factor. There’s a high co-occurrence of ADHD with APD, too. They seem related somehow, but I haven’t read enough to figure out exactly how. It has got me wondering if some of my focus issues may be more about APD, though. Either way, I’ll be bringing it up in my ADHD assessment to make sure the assessor considers it.

As well as autism and ME/CFS.

Damn. Is it ok that I’m just tired of realising all my challenges have a name, and basically won’t ever leave me? I am tired right now and feeling a bit low, so I’m probably just needing to vent for a sec. I just want a break, though. Does that make sense?

I know, I know, each are only facets of what makes me, me. It just sometimes feels like… a lot. Each have such a big impact socially, too. It’s all really isolating. I’m glad to know about them and create a healthier lifestyle for myself… but it’s a far cry from the exciting nomadic entrepreneurial plans I had in my younger years.

@actuallyautistic

AnAutieAtUni OP ,
@AnAutieAtUni@neurodifferent.me avatar

@BernieDoesIt

Darn the APD for keeping such a secret from you! (Joking!!) 😆

Yeah, I thought APD was mostly/only an autistic thing, too. I’ve been surprised to see it mentioned less than ADHD. But I suspect it may be due to inattentive-type traits occurring in both. If I’m in a social gathering and everyone’s engaging in conversation but I’m not because I literally can’t (due to APD), then I do get self conscious, I fidget, I get bored, I might walk off, I may even attempt to start a convo 1-to-1 that’s off-topic just so I can speak… but it’ll look like I haven’t been paying attention, which is kinda true!

So, from a neurological standpoint, I bet APD could relate to any type of neurodevelopmental condition, especially autism and ADHD. This is my opinion, though, based on what I understand of it all so far.

But from an outwardly-visible-traits standpoint, I can see how APD and ADHD would look similar.

@actuallyautistic @actuallyadhd

AnAutieAtUni , to MECFS group
@AnAutieAtUni@neurodifferent.me avatar

“Calling in sick” when also autistic:

Just had big realisation that I’ve always found it hard, if not impossible, to make a phone call to tell work I was unwell.

It’s not like I was unwell a lot (before I got ME/CFS) but viruses always wiped me out and made driving to work a hazard at the very least.

I find phone calls really hard anyway. Transactional ones are ok like a simple call to book a simple appointment. But even booking a doctor’s appointment is complex (and stressful!) and so very difficult to do, usually impossible. So I just don’t go to the doctor.

When I’m unwell, phone calls get so much harder. I can’t translate myself into neurotypical as well, or mask. I find audio-only communication takes a huge amount of focus and brain power to decipher, so when I’m unwell that doesn’t work well either. Everything is harder.

So, of course, I was sure I would come across a fraud when I called in sick. The only privately-rehearsed phone calls (a necessary practice for me as an autistic) I ever did were of being a healthy person on the phone … so I don’t know how to do neurotypical for unwell. How would I know what that even sounds like? I’ve even been told I don’t sound sick before. And when you’re genuinely sick, AND hate taking time off, AND have integrity as your number 1 value in life… that is an awful thing to hear back. It means that even if I took the day off, I was massively stressed and did not recover anyway.

So, I’d be more likely to go into work sick and struggle. But even then, I was an autistic who was sick… I don’t know, even now, how neurotypicals behave when sick at work. So I’d come across “weird” or “rude” instead, which gets punished.

This is something I will need to think about when I get a job where there are expectations about showing up to work. Perhaps I can chat with a line manager about it. I can usually do work from home when sick, though, so that’s why hybrid work is ideal for me, but it’ll need pre-agreed flexibility.

It has been 14 years since I last had a job like that - I got sick with ME/CFS, was forced to give up almost everything in my life. I tried self employment so I could work remotely. It worked for a while, until I could no longer work. Glad to be doing better today, but ME/CFS PEM crashes are a reality I cannot control. I’ll need to plan carefully. A future boss will also need to trust me and it is a very fragile thing for a neurotypical to trust an autistic. I’m not even sure it’s possible.

@actuallyautistic @mecfs

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

Autism and Assessments:

Being autistic means (to me) to not be a natural at ‘reading between the lines’. This means that an assessment must be well defined for me to have a fair chance of doing my best at it. If it isn’t well defined, then I am also being tested on how well I can understand the assessment, which will be sheer luck at that point.

I’m currently in the impossible position where an assessment for my degree has 1 essential criterion that is absolutely vague.

PLUS only 1 member of staff knows what they meant when they wrote it.

AND they just refused my request for clarification “because the cohort is too big for individual questions”. 🤯

This whole set up is stressing me out to the max. I cannot begin the assessment without understanding this first criterion. If I get it wrong, I could be marked down - or worse.

I am so stressed I am not sleeping. I can’t see a way forward, not even other staff who could help. It feels like an impossible situation.


@actuallyautistic

AnAutieAtUni OP ,
@AnAutieAtUni@neurodifferent.me avatar

@Georgy @actuallyautistic But then, I can't actually imagine myself taking legal action against my uni. I'd probably only make myself too sick with the stress in the process. So, perhaps it's a good way to encourage staff to implement accommodations, but I do wonder how if the accountability is robust.

AnAutieAtUni OP ,
@AnAutieAtUni@neurodifferent.me avatar

Autism and Assessments: a slightly positive update

My academic tutor got back to me already, despite being in another country. They chased the lecturer who declined to help me and apparently they are NOW going to help me.

Well, when I say “help”, the lecturer only actually said they will “reply” to me.

In my experience, it may not end up being the type of help I need, but I’ll take even the smallest increase in clarity about the assessment as a win at this point.

At the same time, I’ve been trying to find my own solutions. I’ve come up with a plan that is still risky and still may not meet this criterion. But it’s something. If it turns out it would meet the criterion, I think it can help me meet the other assessment criteria quite well, so I can only hope. Damn I hate the uncertainty of all this.

I don’t even know how strict this vague criterion is. It could even be flexible, or subjective. But I have no idea if it is or how it might be. Argh!

It’s quite a gamble, but I need to reduce my stress. I need hope. And I need to be able to sleep, or I won’t be able to work at all (due to ME/CFS repercussions). Weekends can be so damn long when waiting for replies about important things, so I have to try to hold out hope. The deadline for this coursework isn’t going to wait for me.

@actuallyautistic

AnAutieAtUni OP ,
@AnAutieAtUni@neurodifferent.me avatar

Autism and Assessments: positive update and also concerning for other students like me

After the lecturer said they wouldn’t reply to “individual queries” due to the “cohort being too big”, then me asking my academic tutor for advice… the following happened:

The lecturer magically got back to me.

Not once.

Not twice.

But now four times. And PERSONALLY. I.e. individually and not “generally”.

This is a break in integrity. What happened to them not being able to respond to “individual queries”? What changed? I have many potential guesses… but the fact it took my tutor to intervene, perhaps highlighting how excluded I’ve been all term, that I have a disability, etc… this does not look good.

The good news is: they clarified the assessment criteria enough for me to be able to work on it. It’s not as clear as it could be, but it’s 80% there. I’m okay with that. I’m not aiming for perfect on this coursework. I’ll do my best with what I know.

The concerning news:

The lecturer has since said today, via personal email (another “individual” reply) that they have made a note that I fulfilled this particular assessment criterion. So I don’t need to worry about this - I can focus on the other criteria.

Ok. Thanks. But I have to take their word for it that they’ve made this note AND will remember it. There is nothing transparent about this decision or process at all.

Worse, though: I am by no means the only autistic student, and I won’t be the only student (autistic or not) who found this assessment criterion absolutely vague. How are THEY going to be helped? How is this assessment going to be made a level playing field for all?

I got the guts to email the lecturer for help, then cried at their decline, then got the guts again to post my request on an open forum for the module where my name and my struggles would be emailed out together to the ENTIRE “big cohort”, then got the guts yet again to email my academic tutor for help…

How many other students would do ALL that? I know from experience that I am absolutely in a minority. I was only the 2nd student to use that forum - so that’s a big clue.

I do NOT want special treatment; I want inclusivity for all. Remove the f*cking barrier! Don’t give me a metaphorical box to stand on. (See attached image for what I’m referencing.)

It doesn’t help that the module is about topics like these: inclusivity, trust, fairness, transparency, regulations. The irony?!

Massive vent. Thank you to everyone who followed along and supported me. This was a major, major stress. It has been a massive help knowing I’m not alone in these struggles and that you ‘get’ it. Thank you 🙏

@actuallyautistic

Cartoon with 4 panels, each showing 3 people of different heights standing to watch a sports game from the sidelines. There is a fence between them and the game, which blocks the view of all but the tallest person. In the panel labelled Equality, each is standing on an identical box. This only helps the 2 tallest people to see over the fence, not the shortest. In the panel labelled Equity, each person has a number of boxes to stand on according to what they need to be able to see over the fence - zero, one or two - so each person can see. In the panel labelled Reality, it highlights inequity with the tallest person on so many boxes they are high in the sky, the middle height person is on one box and able to see, but the shortest person is standing in a hole making them lower than ground level and absolutely not able to see. In the final panel labelled Liberation, the fence is removed! All can see by simply standing on the same level ground! No boxes needed.
ALT
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    • AnAutieAtUni OP ,
    @AnAutieAtUni@neurodifferent.me avatar

    @pathfinder @actuallyautistic Thank you so much. 🙏 This means a lot. I don’t feel strong but it did take strength so maybe, just maybe, I have some strength in me!

    AnAutieAtUni OP ,
    @AnAutieAtUni@neurodifferent.me avatar

    @Shufei @actuallyautistic I know what you mean, but worth noting here that the lecturer (and possibly my academic tutor too) are both neurodivergent themselves.

    Even so, it doesn’t mean the system is fixed - internalised ableism is a thing. But I’ve found staff extremely supportive when they realise how passionate and sincere I am in my efforts to actually learn, and I tell them what I need. I’ve got this far literally only because of a group of supportive staff around me - from disability support to my academic tutor to my DSA mentor. My work might be my own, but I feel like I’ve been supported by many so, broadly speaking, it has been a group effort. I did not expect this before I came to uni - my past 3+ university attempts decades ago all ended in failure and quitting, but could have been so different with support. I am happily surprised right now!

    The system has so many problems. I agree. But many workplaces are much worse in my experience from my past career. I’m using this time to learn what works for me, learn how to talk with people to ask them to help me, and navigate these ridiculous systems that are everywhere, not just at universities.

    I’m an optimistic realist: realism is essential and foundational to me, but I choose hope when it is a realistic thing to choose, which keeps being more frequently than I expect!

    Also - the “eh” brigade - I’m not sure what you mean by that. Perhaps students who are in university only to tick a box, getting by with minimal effort, cutting corners and not engaging? If so, I’ve witnessed them being respectfully challenged (to engage). Staff are aware of them and definitely don’t give them preferential treatment like you suggest. The ones who truly don’t try or care were mostly filtered out and didn’t qualify to subsequent academic years. AND I have lost count how many times I’ve witnessed staff not engaging in workplaces and are just there to tick boxes, or even stir up drama. Again, this is not JUST a university thing, it’s a society thing, but it still needs addressing in universities.

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