actuallyaudhd
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
Options: (choose one)
I wonder how other #autistic #actuallyaudhd #actuallyautistic people feel about the tv shows:
- The Good Doctor
- Parenthood
Cc @autistics
I'm listening to Fern Brady talk about autism. Meltdowns as being like a bottle of pop/soda that's been shaken too much and then you open it.
I've read that it's often like anger. But anger tends to resolve quickly when the cause is fixed. Whereas, with a meltdown, NOPE! We're still "angry".
This was so much of my childhood. I was so angry so often.
Not that I could tell that this was odd because my father didn't like me and would yell at me. And he'd yell at my mother in front of me. I'd get between them and yell at him to stop.
Afterward, after his yelling and demeaning words, I'd go into a quiet room, turn off the lights, sit on the floor, and seethe.
Sure, it was justified seething. I was getting emotionally abused, before anyone thought this was wrong (back in the '80s). But I knew it was **wrong**
But the anger. I would be angry for hours.
When I'd be bullied or teased for being different in school, I'd be angry for a while. I'd even be violent within limits.
When I felt like I had no agency, I'd punch objects. I'd even Charlie horse myself: colloquial for punching myself in the thigh until walking with that leg ached.
So, sure, C-PTSD, because of years of accumulated awfulness. But also autism.
And this is so much of the difficulty with being autistic and getting diagnosed. The diagnostician has to untangle the trauma from possible autistic symptoms. There's overlap.
Also, so so SO many autistics have trauma. So many.
@autistics When verbalizing and listening to speech is challenging, have you tried using sign language? Is it similarly as exhausting? Differently? Or not particularly tiring?
I can talk now but forming words is just tiring as is listening to them when I feel a strong need to be attentive.
I'd find it easier to perform the "sorry" sign than to say it, for example.
Note: my processing issues are heavily auditory.
@autistics So I've been reading Devon's Unmasking Autism. I find myself unsettled:
1. Devon is insistent on one or two qualities shared among all autistics. He emphasizes repeatedly that we are all bottom up thinkers. He seems to say that this is not just universal among autistics but that it shows up pervasively in all of our experiences.
2. He notes overlapping conditions but seems to present little to no information about the lived experience of being autistic while also being X for various values of X.
3. I *do* appreciate exploring LGBTQ+, black, and brown experiences. Eating disorders however, in my incomplete reading thus far, seem to have limited exploration.
4. Late-diagnosed experience is explored a little but so far not deeply.
5. Much of his writing seems anecdotal and based on his own experiences while sometimes tangentially and occasionally deeply exploring others' experiences.
6. I see his work cited repeatedly in the community.
Objectively, I find (5) concerning exactly because most of this work is literally not objective. I realize making such a work requires advancing the science significantly. Subjectively, I am concerned because I see this work lauded somewhat frequently.
To my other points, I find myself excluded from his work in a number of ways. In particular, I am most disconcerted by:
A. The absence of a deep exploration of #actuallyaudhd. This presentation occurs significantly in the #actuallyautistic community. With his work so focused on the autistic experience with little exploration of what it's like to live as a significant subtype? I literally am gaslighting myself as I read his book. Am I really autistic? Devon's definitions don't apply to me easily.
B. Arguably a subset of A. Am I a "bottom up thinker"? Maybe? I wouldn't use those words.
I am, instead, this:
- A *pattern matcher*. Given many disparate data points, far and near, not even in the same domain, I tend see systems—sometimes fractally. It causes me to rightly predict outcomes most others don't see as early, Examples: a) I predicted COVID's explosive growth and risk a couple of months before the media told the public (not self-aggrandizing here but literal example), b) I predict the outcome of most every book and television program I take in. Re: b) it is the rare storyteller who gets by me without a deus ex machina (and I deeply appreciate those precious remarkable works that do surprise... but I digress)
- late diagnosed ADHD-C and later diagnosed autistic with C-PTSD who has had BED most of his life
I not only don't feel seen in this book but find myself literally gaslit reading it. If I don't match his definition, and was diagnosed autistic, is my diagnosis therefore wrong? Without an exploration of AuDHD, I am left feeling unmoored by his work. I find myself looking for patterns in my behavior that match his definition and don't. Selection and confirmation bias makes this even more dysphoric!
@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.