AnAutieAtUni

AnAutieAtUni , 1 day ago to ActuallyAutistic group

Question for ADHD’ers:

(Trying to be smart and ask this question now, not after struggling for months like I did after my autism assessment.)

What helped support you most to process everything after you received a diagnosis of ADHD?

I’m talking about after having had an assessment with a clinician and receiving an official diagnosis of ADHD. (Self diagnosis is valid, etc etc. See my quoted post below. My experience of self-dx has been generally easier, so I’m asking specifically about after an assessment, which is more like an event in itself.)

Obviously, there’s nothing available for me from the place I got assessed, damnit. So I’m needing to figure out what to do myself. Realising I have many questions, doing a lot of questioning, too. Feeling the same as after the autism assessment a few years ago: my life has been assessed with all its challenges, I’ve been given a label and now I’m expected to just carry on. I’m massively grateful, but it’s a lot to take in. How do I begin to process it…

@actuallyadhd @actuallyautistic

From: @AnAutieAtUni
https://beige.party/@AnAutieAtUni/112684117363810968

AnAutieAtUni OP , 1 day ago

@wakame @actuallyadhd @actuallyautistic Thank you so much for sharing this. As someone who has just completed their 4th official attempt / 5th in total… at getting a degree at uni I definitely know what you mean about the challenges. It has been a very bumpy ride, but finding out I’m autistic 3 years ago helped point me in a better direction this time.

Really interesting to hear your journey with learning about the most common traits and also exploring medication. I have no idea about medication right now, but will chat with the clinician in a few weeks to learn more about all the options. I’ve got a couple of other health issues to be mindful of, but damn, I really want to get better at some important tasks related to life & work.

AnAutieAtUni OP , 1 day ago

@KekunPlazas @actuallyadhd @actuallyautistic Sounds like a really supportive way of approaching it. Thanks for sharing this.

AnAutieAtUni OP , 14 hours ago

@wakame @actuallyadhd @actuallyautistic Thank you so much - wise advice!

I haven’t been following many medication threads here but the ones I have seen basically echo what you said. Sounds like everyone is very different, lots to take into account. I’m guessing it’ll be a long journey to figure this stuff out.

I’ve been wondering whether it’s worth it to explore it, especially with medication shortages, but I also want to be ready for when I feel I need that intervention to help me with work/life. Might as well start learning now.

AnAutieAtUni , 2 days ago to ActuallyAutistic group

ADHD assessment done. Hi 👋 I’m officially AuDHD. What the flip.

No idea how I feel about this yet. May take a few days. Feel VERY sensitive about this right now so please be kind in the replies. Not sure whether to cry, be happy, relieved, or just overwhelmed… I’ll settle for a few silent expletives and going non-speaking for a while (days?).

(P.S. Self identifying is valid. I had just realised I may as well self identify regardless of the assessment outcome, but I’m someone who needed this second opinion by a qualified clinician. My self dx’s of autism and ADHD have both proved to be accurate.)

@actuallyadhd @actuallyautistic

AnAutieAtUni OP , 1 day ago

@johne @actuallyadhd @actuallyautistic Thank you! Yeah when you find that it fits, might as well explore more. Hope all goes well.

AnAutieAtUni OP , 1 day ago

@vger @actuallyadhd @actuallyautistic Thank you. Hope you are processing it all ok. Taking our time sounds very wise…

AnAutieAtUni OP , 1 day ago

@Zumbador @actuallyadhd @actuallyautistic Thank you! I really thought that - because I’m aware of the imposter syndrome thing - that I would avoid it. But it turns out your reminder was perfectly timed. I went down a spiral pretty quickly. Doing better today, but glad to be a bit more aware in case/when it resurfaces.

It really is ‘amazing’ to me how it was a shock even though I had figured it out. I guess it’s really natural when you only start to realise later in life, versus having an idea about being ND from an earlier age. Plenty of time practising writing off my challenges using cruel reasons instead. Hmmm. Thank goodness for the chance to change that mindset now.

AnAutieAtUni OP , 1 day ago

@pathfinder @actuallyadhd @actuallyautistic Thank you so much! Definitely collecting all the acronyms!! 😅 Since I started my degree I’ve collected way more ‘bits of paper’ than expected (was hoping for just 1: a degree!). Not all diagnoses - a few extra accomplishments at uni - but wowzers, I just didn’t expect so much self-learning alongside academic learning. I can’t imagine my life without having stumbled across neurodiversity by accident at uni now… Truly. The future looks much more empowered with that self-knowledge, versus stumbling across “surprise” challenges that I can’t “fix” and feel like Groundhog Day.

catswhocode , 4 days ago to ActuallyAutistic group

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

AnAutieAtUni , 4 days ago

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

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

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

AnAutieAtUni , 7 days ago to ActuallyAutistic group

The power of mentoring for me as an autistic adult and mature university student:

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

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

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

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

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

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

—

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

@actuallyautistic

AnAutieAtUni OP , 7 days ago

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

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

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

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

AnAutieAtUni , 8 days ago to ActuallyAutistic group

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

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

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

My hypotheses:

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

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

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

—-

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

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

@actuallyautistic @mecfs

AnAutieAtUni OP , 7 days ago

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

chevalier26 , 13 days ago to ActuallyAutistic group

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

I’m at a loss for words.

AnAutieAtUni , 12 days ago

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

Example reasons:

• My reply is personal to you or me.

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

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

Etc. 💗

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

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

AnAutieAtUni , 12 days ago

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

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

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

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

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

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

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

AnAutieAtUni , 12 days ago

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

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

AnAutieAtUni , 12 days ago to ActuallyAutistic group

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

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

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

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

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

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

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

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

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

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

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

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

https://autismbooksbyautisticauthors.com

@actuallyautistic @actuallyadhd

AnAutieAtUni OP , 12 days ago

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

AnAutieAtUni OP , 12 days ago

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

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

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