AnAutieAtUni

AnAutieAtUni , 3 days ago to actuallyautistic

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 , 4 days ago to actuallyautistic

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. 💝

@actuallyautistic @mecfs

AnAutieAtUni , 6 days ago to actuallyautistic

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.

#AskingAutistics #ActuallyAutistic @actuallyautistic #AutisticPride :neuro:

AnAutieAtUni , 6 days ago to actuallyautistic

: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 , 7 days ago to actuallyadhd

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 , 8 days ago to actuallyautistic

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 , 8 days ago to actuallyadhd

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

AnAutieAtUni , 10 days ago to actuallyadhd

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 , 10 days ago to actuallyautistic

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 , 11 days ago to actuallyautistic

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.]

snoopy_jay , 11 days ago to actuallyautistic German

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

AnAutieAtUni , 11 days ago to actuallyadhd

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 , 12 days ago to actuallyautistic

@actuallyautistic

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

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

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

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

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

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

#Autism
#ActuallyAutistic

AnAutieAtUni , 13 days ago to actuallyautistic

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 , 14 days ago to actuallyautistic

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 , 15 days ago to actuallyadhd

Update on prepping for my ADHD assessment:

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 , 17 days ago to actuallyadhd

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 #ADHD

AnAutieAtUni , 18 days ago to actuallyautistic

Sometimes it feels like there are never enough ways to prove myself before I’m accepted and my work skills, experience etc are valued.

I really suspect this is an autistic thing, because what I’m referring to is mostly neurotypical ways of “proving myself”. For example, social proof, rather than academic grades.

But it might also be related to being female and realising I am career-changing from a male-dominated industry to another industry that’s pale-male-and-stale dominated.

[Joking:] WHY am I doing this to myself?!! [/Joking]

I know why: I’m doing this to myself because I’m following my passions and what makes me, me, for the first time in my life. I’m NOT purposefully seeking to be marginalised and excluded. It just sucks that seems to be a risk, yet again.

I really want to work for a neurodivergent-dominant company! That would be HEAVEN! (I am actively working on this, and looking for ways to identify ND-friendly places.)

#ActuallyAutistic @actuallyautistic

AnAutieAtUni , 21 days ago to actuallyadhd

“If I’m not stressed about it, I will forget it.”

Just caught myself realising this is true for me. Is this an ADHD type thing? Maybe a coping strategy? If you can call making yourself stressed “coping”!! 🤪

I have an online call shortly, and I’m annoyed with myself for not being more stressed about it to make sure I’m preparing and on time for it.

Now my uni work is done, a lot of background stress has dropped away, and these things are becoming clearer.

ADHD assessment later this month! But still not sure if I’d meet the criteria.

@actuallyadhd #ActuallyADHD