actuallyadhd

Have the fedi groups for #ActuallyAutistic and #ActuallyADHD changed? As in do they have different names/titles compared to before?

#actuallyAutistic #actuallyADHD

So, friends - as the gup.pe groups have unexpectedly died, how do we all get together again elsewhere? Has anyone set up anything yet, and how do we spread the word?

If you haven’t heard about it yet:

https://social.growyourown.services/@FediTips/115164282623836102

@pathfinder
@hosford42
@Zumbador
@KatyElphinstone
@hmm_cook

more groups recreated!

@ActuallyAutistic
@ActuallyADHD
@ActuallyAuDHD
@neurodivergent
@neurodiversity

#actuallyautistic #actuallyadhd #actuallyaudhd #neurodivergent #neurodiversity

Anyone else a fan of the movie/tv show Limitless? Watching them for maybe the 4th or 5th time now. The starting position of these two people resonates really hard, especially Eddie since he's a writer like me. Probably it's the ADHD side, but could be the autistic side; not sure since I'm both. Definitely an executive function issue. The appeal isn't of being smarter (although that's cool too), it's that being able to engage hyperfocus at will. If I could just look at (one of) my to-do list(s), and hyperfocus each item off of it, *that* would be amazing.

#ActuallyADHD #ActuallyAutistic #ADHD @autistics #Limitless

Hello!

I'm Cassian, I'm nonbinary (they/them) and I live in Wales. I mostly post about TV I'm watching, surveys I'm interested in, being neurodivergent, environment stuff, things I'm making, and spontaneous grumpy rants of little consequence.

I do the @gendercensus annually.

I first tried the Fediverse over 10 years ago, but didn't really get ensconced until the first wave of Mastodon in 2016.

#introduction #introductions #ActuallyAutistic #ActuallyADHD #neurodivergent #disabled #disability #environment #Wales #knitting #sewing #3DPrinting #recycling #upcycling #nonbinary

To my autistic and ADHD fellows: Do you prefer to travel by public transport or car?

Please be aware: This poll is asking for your preference, not which of the options you have access to (based on price, reliability, physical access, etc.). I also don't want to divide between being autistic and/or ADHD.

Re-toot appreciated!

@autistics @actuallyadhd #ActuallyAutistic #ActuallyADHD #ActuallyAuDHD

One giant leap for a neurodivergent,
One small step for neurodivergents.

I think that makes sense.

So I had a big victory today. I have been applying for income assistance with my provincial government. I was hesitant because I had tried it once before many years ago and it was such a dehumanizing experience that I couldn't continue past the first orientation meeting. They were more concerned with catching people trying to defraud the government than they were helping anyone. But a friend of mine that has been helping me get my life together pushed me into it.

Yesterday I had an assessment over the phone that lasted an hour. Yes, I hate the phone too, so this was nerve-wracking. But due to my situation they said that since I didn't have a diagnosis for anything (I told them I was autistic, ADHD, and suffering from burnout), that unless I could get a doctor's note right away saying I can't work, that I'll be denied. I don't have a family doctor so the woman told me to just walk into a clinic and do it.

Now I thought that it was over because I didn't think I could convince a doctor that I couldn't work for these reasons in one visit any more than I could convince this woman. But I went in today, waited in the waiting room anxiously, and then told the doctor my situation. I barely had to explain anything, just that I was applying for income assistance, needed a note saying I couldn't work, and when he asked the reason, I told him that I was pursuing a diagnosis for ADHD, autism, and burnout. He said ok, I can give you three months.

😳

🤯

And that was it. I got the letter. Didn't even charge me for it. 🎉

Now this doesn't automatically mean that I'll get the income assistance, but my odds sure look a lot better. I've met all the terms this woman laid out for me. I guess we'll see... 🤞 In any case, while I'm still exhausted from this whole mess, my mood is sure a lot brighter now. 😊

#ActuallyAutistic @autistics #neurodivergent #ActuallyADHD

When a #neurodivergent person tells you about how something is difficult for them, rather than thinking of them as whiny, consider that this probably means they have a certain level of trust in you to drop their mask enough to do so.

Invalidating that struggle is likely also a pretty effective way of eroding that trust.
#ActuallyADHD

@autistics I'm going to write here about how I struggle to manage my spoons (energy spent throughout the day; see also "spoon theory") and the difficulties for us #neurodiverse people to survive and maybe thrive in a society that expects so much.

I’m not writing any of this to vent. Ultimately, near the end, I'm asking y'all to compare notes with me.

After decades as a software developer, I became a manager in Tech. It was my choice. At the time, I knew I was #actuallyadhd but had not yet been also diagnosed as #actuallyautistic. I had personally experienced mistreatment by egotistical and at times egomaniacal bosses. I'd seen my coworkers experience same. I suspected I could treat people with more compassion while getting the job done.

Things that ate my energy included:
- Meeting individually with my people were sacred to me. However, these meetings were very high in emotional labor. I did my best to be present for them through whatever they were sharing, offering coaching and mentoring where I could, referring out for what I couldn't, and also being a shoulder to cry on when needed.
- Group meetings with fellow managers and higher-ups. I felt more anxiety in these meetings. Really, anything involving "managing up" (meaning: dealing with "superiors"). While I did my best to collaborate, I felt a keener need to look for cues of threat in these interactions. More exhaustion.
- Finding time to do the paperwork. There's *always* paperwork. It takes effort, time, and even, sometimes, concentration. This would range between writing long term plans (lots of systems and strategic thinking) and lots of red-tape (my #actuallyaudhd interpretation of work that often seemed like a waste of time but required by the "organization").

Meetings required intense masking. In the corporate world, these days, there seems to be this expectation that managers all present as mini-Steve Jobs. We're expected to always appear composed. We're always supposed to show up, in group settings, as empathetic. In nearly all meetings, particularly with "reports" (people who work for us), we're coached to show up as kind yet, perversely, somewhat aloof; after all, we're in these meetings to "coach" and "mentor" as well where people aren't "meeting expectations" (also, more positively, to support high achievers when we see that they can excel even further).

It was, to say the least, a struggle.

So more to the point:

I survived and even thrived, for a time, largely by my managing my spoons. I started doing this deliberately, just to get through each day on the job. However, at the time, I wasn't seeing this as "spoons" so much as judging my ability to be *mentally aware and present* to perform a given task or function in a meeting. I was methodical in my process for managing my energy.

But I was only able to do this while on the job. Somehow, it was easier to force (mostly) consistent structure onto myself when it was for pay. But, also, once my work day was done, I was done. My life outside of work? A wreck. At the end of almost every day, I was stick-a-fork-in-me level of crispy. I had nothing left to give to anyone including myself.

Ultimately, all of this structure collapsed. I collapsed. Then I quit. I struggled through the autistic burnout I'd accumulated over years. Now, I'm unemployed and figuring out WTF to do with myself.

I'm just starting to show signs of recovering.

Now, on days when I want to do chores, I try to consider my spoons. I realize now that there are far less than I had been spending during all of those years of employment (leading into autistic burnout). Now, I plan maybe 1-3 significant chores, attempting to prioritize by both urgency and importance axes.

Having established a lot of context, onto the notes comparison request:

I imagine most of y'all are aware of your finite daily spoons (again, see: spoon theory)? Do any of y'all plan around your spoons? For taxing activities/events, do you find yourself reserving spoons earlier in the day? Maybe also the day before? Do you deliberately plan to go into debt, requiring recovery time the same day? Maybe the day after? Maybe even a few days after?

Do you take care of yourself similarly? Does it make life more comfortable? Less?

If you're employed, do you do anything like this as part of employment (something I'm mulling returning to versus self-employment)?

Really curious to hear about your experiences.

I just had an idea that I want to run by the neurodivergent community as a possible way that some of us might be able to help each other. I have no idea if anyone would be interested in trying it, or even if it would work, so I want to know what others think.

If you want, you can skip down to "The Idea" below, or you can bare with me for a tiny bit of background first for some context.

So like many of us I have executive function issues. For me, when I get a new interest, I hyperfocus on it for a couple of weeks or months, and then I stop. Not because I lose interest in it, it's more like running out of gas while still on the road: you really want to keep going, but the damn thing just won't move. This is not really a problem for most of my interests, but for certain projects, it can leave them unfinished, which really frustrates me.

So far the only thing that I've found that can give me energy to continue a project is engagement. If I can find someone to talk to about it, that helps. If they talk with me about it, that helps more. If they actually work with me on the project (assuming that it's the kind of project that someone can help with), that helps the most. The trouble of course has been finding people who are also interested in the same thing(s), thus this pretty much never happens for me.

But now I recall some people in the autistic/ND community saying that they actually like listening to other people info-dump about their special interest(s). So this got me thinking...

The Idea:

Basically this shares some traits with body doubling and mutual aid. If someone like me needs engagement to work on a project (or maybe even just share an interest for the sake of some social contact), and someone else would be interested in helping out this way, the second person would be like their interest-buddy (hopefully a better name will be found). Kind of like how some people help others by body-doubling, except this will be with talking or maybe even participating instead of presence. And like body doubling, it can be a one time thing, an ongoing arrangement of some kind, whatever the two (or more?) people agree on. But unlike body doubling, it can be done (well more easily anyway) over the internet. Social media posts, DMs, chats, voice, whatever. Of course discovery would an issue, but no different than for body doubling or mutual aid, so I'll leave that issue.

So how about it? Is there any merit to this? Any use? Any interest? (And I mean in general, not just for me.)

#ActuallyAutistic @autistics #ActuallyADHD #neurodivergent #AuDHD #ADHD

I've spent a lifetime making myself smaller for everyone.

Making myself the version of me that was most useful and comfortable for everyone around me.

And I *HAVE* to stop before I disappear.

I wrote about learning to TAKE UP SPACE: https://fromemily.com/space-taking-defiance/

Maybe you've made yourself smaller too? Let's TAKE UP SPACE together.

@actuallyautistic

#ActuallyAutistic #ActuallyADHD #mentalhealth #neurodivergent #neurodiversity #writing #FromEmily #SmallWeb #writersofmastodon

Hi. I'm terrified.

I've been trying to make my own space on the web for years. And I've been stuck. Badly.

But today is my birthday. And I refuse to let another year pass without putting something—anything—out there.

So here it is in all its messy glory. My first post on my barely-there #website: https://fromemily.com/hi-im-terrified/

It's not great. But it's okay...enough.

And I hope it means something to someone.

@actuallyautistic

#SmallWeb #ActuallyAutistic #ActuallyADHD #writing #blogging

My brain's been serving up some real darkness lately.

(And when an #ActuallyAutistic brain latches onto something, it COMMITS 🙃)

So I'm reminding myself that in this world (especially at this time) ✨#Autistic Joy✨ is an act of defiant resistance.

And I'll be damned if I don't remember to stand in awe of all I've weathered, and of our #neurodivergent culture as a whole.

@actuallyautistic

#ActuallyADHD #AuDHD #ADHD #neurodivergent #neurodiversity

ALT

#Introduction Hashtags, so I can pin this post and take them out of my profile:

#Education #Research #Phd, #BCS #Computing #Teacher #CCT
#CSEd #Programming #BCS
#ActuallyAutistic
#ActuallyADHD
I live with #MultipleSclerosis
#Zen / #Nonduality #Buddhist, weirdly into #Jung
#Research topics:
- #EdAI / #AIEd - #LLMs in #Education
- #CriticalStudies of #EdTech
- #Neurodiversity in #Education, and the experience of ND educators.

@autistics @actuallyadhd

I wanted to express gratitude to all of you on here for sharing your lived experience, struggles and all.

I’ve learned more about myself through your sharing than I ever would have doing this by myself or with “official support”.

With a special shoutout to people from the #ADHD side of our tribe, giving me invaluable, refreshing—and sometimes confronting—insights.

#ActuallyAutistic #ActuallyADHD

@actuallyadhd @autistics I saw a NYT story about autistics working in professional kitchens. It occurred to me to ask folks in /r/kitchenconfidential for their experiences with autistics in kitchens—not for me but for the community here and on autistic subreddits.

I think you'll be pleased by the response. In a nutshell: a LOT of folks in professional kitchens are autistic, AuDHD, or ADHD. I imagine that they're L1 or 2.

https://www.reddit.com/r/KitchenConfidential/s/rUwpUJBSsJ

#actuallyautistic #actuallyaudhd #actuallyadhd

How many of you experience "head of line blocking?"

That's a technical term regarding the TCP protocol used on the internet, but I also use it to describe when I'm frozen on Big Important Task and then can't complete any smaller less important task either until the Big and/or Dreaded Task is done.

#ActuallyADHD #ActuallyAutistic @actuallyadhd @autistics

Lately I have been pondering how much of my natural personality is repressed because my ADHD requires significant energy and I have a chronic illness that is exacerbated by exertion and involves bone crushing fatigue.

Hmmm.

When I’m having a better health day, I can burn through energy reserves completely and have a health crash if I allow myself to be spontaneous, get side tracked, get excited, physically move more including stimming… the list goes on.

I miss those sides to myself.

I feel jailed inside this body most days.

I dream of physical freedom. 🐎

@autistics @mecfs
#ADHD #ActuallyADHD #AuDHD #pwME #MEcfs

If you are looking for awesome new neurodivergent content by a deep-thinking yet highly approachable doctor living our realities, check out Neurodivergent Insights. I also highly recommend their newsletter, as they cover extremely relevant content to our lives.

https://www.youtube.com/@NeurodivergentInsightsTV

@autistics #YouTube #Neurodivergent #ActuallyAutistic #ActuallyADHD #ActuallyAuDHD

I *FINALLY* understand why we tend to self-harm. Our senses can become so overwhelmed that the only way to manage them is buy causing intense localized discomfort to force us to focus ourselves to a far smaller set of sensory inputs. In that way, self-harm is a form of sensor-deprivation, as counter-intuitive as that may seem.

I realize that I have had these kinds of behaviors, in different forms, almost my entire life.

The more I reflect on the entirety of my life, the more past autistic experiences and behaviors reveal themselves. Back then, what I lacked was the autistic frame of reference. After all, I was diagnosed at age 50.

#actuallyaudhd #actuallyautistic #actuallyadhd @autistics

Question for the Fediverse: are there any texts on how neurodivergence, especially autism and ADHD, is perceived and/or dealt with in cultures other than western European/North American culture? Scholarly sources, fiction, whatever (preferably in English).
#actuallyAutistic #askFedi #actuallyADHD

Been to pick up a "new to us" car today, to replace the one written off last Sat. Exactly the same model/spec/age and hence interior. The dealers were great. When I explained we are ND and have sensory issue with smell they didn't use ANY chemical products when valeting. Perfect! Like putting a pair of well loved slippers 😊
@actuallyadhd @autistics
#actuallyautistic #actuallyadhd

So tomorrow is the big day that I've been... anticipating... for months now: my first appointment with a psychiatrist. And yeah, I'm a bit nervous. First of all, what kind will they be: a nice, caring person who actually listens and is well informed about and supportive of neurodiversity? Or an old-school, manipulative elitist who likes having control over people and may have more control over my life than I want them to? How much self advocacy am I going to have to do? (Of course I've been madly scripting since I got the appointment.) And how much of that will do any good?

And then there is the possibility that, thanks to a misunderstanding with another doctor, that this one will likely think that I am there to get a diagnosis for autism and adhd. But really what I want is someone to talk to about my situation, goals, and options, like how to navigate the system and whether a diagnosis would benefit me more than any potential drawbacks. I worry that when told this that they will get angry and tell me that I just wasted their time (typical RSD). (sigh) I guess we'll just have to wait and see. 😬

#ActuallyAutistic @autistics #ActuallyADHD #AuDHD

In reflecting back on my life as an AuDHDer with interoception, I think it wasn't always present.

Instead, I think as my Sjogren's and fibromyalgia all-over body pain became a part of my daily life, I tuned my body's needs out more and more.

Does this resonate with anyone else?

@autistics #ActuallyAutistic #ActuallyADHD #Interoception #Fibromyalgia #Sjogrens