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first ever neurodiversity end-of-year discussion thread and hangout 2023 (hexbear.net)

submitted 2 years ago* (last edited 2 years ago) by [email protected] to c/[email protected]

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hey there hexbear nd gang! it's that time of year for the first time ever!

here we are once again approaching the end of the year according to the roman imperial calendar that we all have to use for some reason. it's the winter holiday season in the global north, a time of great symbolic significance to many people.

and so, i want to solicit your thoughts about this community, what it means to you, how you'd like to see it evolve, changes in moderation policy, suggestions for thumbnail and banner images, or anything else related to the comm or neurodiversity in general.

or just come hang out!

i also want to invite applications for new moderators for this comm. what would you like to do as a moderator for c/neurodiversity?

personally i've largely been a placeholder, but i do love this community and i want to see it grow as a shared and safe space for our neurodivergent comrades to talk about ourselves and with each other. i also want to do better and want your input about what that means.

c/nd has a well behaved user base so we don't need extra mod help for enforcement or anything like that. what i'm mainly looking for is fresh perspectives on community engagement and growth.

there is absolutely no requirement to disclose any personal information about yourself, just to make that clear. but if you're interested in moderating this community, please contact @[email protected], myself, and/or the other nd mods with an application.

if deadlines help motivate you, you have 3 days from the time you read this.

if deadlines harm your motivation, don't worry about it. if an application comes in a month or two from now of course we'll still consider it. this isn't a job, i'm just asking for volunteers to help moderate a small internet message board.

Application

What is your Hexbear username?

Do you have any preferred pronouns?

What are your thoughts on capitalism?

What are your thoughts on imperialism?

What are your thoughts on trans rights?

What are your thoughts on racial justice?

What are your thoughts on neurodiversity?

What do think about current and previous protests around the world?

What are your thoughts on Veganism and Animal Liberation?

Do you have any experience with other leftist online communities? What did those experiences teach you?

What is your approach to moderation, and how do you work with teams?

How do you deal with online drama and people who try to start things for the sake of it?

Do you have any ideas for c/neurodiveristy community engagement?

What is your general time availability? (amounts, common browsing times, etc)

Element information

Element is a messaging app that lets you talk to people over the Matrix protocol.

To get started, check out this link, where you can choose to either download Element for your platform or, if on a computer, open it in a browser ("Launch Element Web").

The instructions that follow are for the desktop application and the web application, but the process is similar on all apps:

Press "Create Account"
We host our own Matrix server, so if you want you can change matrix.org to chapo.chat. This is completely optional; users who sign up with a matrix.org username can still talk to people with chapo.chat username. (Note: It is chapo.chat, not hexbear.net. Also, registrations aren't always open on chapo.chat; if they're not, just create an account on matrix.org)
Fill in a username and password
Hit register, and you're done!

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[-] [email protected] 9 points 2 years ago

I already knew I had ADHD, but this is the year I finally acknowledged my autism. Over the course of this year, it's made me really understand myself on a much deeper level and I'm working on unmasking more, bit by bit. Also, it's wild the degree to which unmasking has also helped me feel more comfortable in my gender expression, because I have loads of gay little mannerisms that I've suppressed my whole life that just feel so right.

Figuring all this out also means acknowledging how deeply lonely I was as a kid, which is a thought I've really tried to stay away from but I really just need to accept it. As hard as it is, this is how I start healing, and it's already working.

My ADHD can go fuck itself, but realizing I'm autistic feels like as big a revelation as when I came out as trans, and the two really do feel linked in some ways (not in a way where one "caused" the other but in that they're major parts of me that I repressed).

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[-] [email protected] 8 points 2 years ago

I've never been formally diagnosed with anything, and because I could always function reasonably well in society without special accommodations I never thought of myself as any flavour of neurodiverse. But lately tiktok has been recommending me a ton of autism videos out of the blue. I've found that I deeply relate to (among others) the ones about maladaptive daydreaming, rehearsing potential future conversations, deep focus on special interests, not being good at picking up on social cues, problems recognizing or remembering faces, demand avoidance, and the whole masking thing. Some of them more severely than others, and some change in severeness over time. None bad enough long-term to prevent me from holding down a conventional office job and live independently.

So many other areas of concern are ones that I don't experience at all. I've never been bothered by fabric textures. I have no problems with either making or avoiding eye contact as socially appropriate. I don't much care what I eat so long as it's somewhat-healthy, so I don't have "safe foods". I can be in a crowd indefinitely so long as I'm not having to interact much with them, such as on public transit or in crowded streets. I have no problem with ambient sounds so I don't need to do the 24/7 noise-cancelling headphone thing. I'm told that I can be downright charming in conversation on occasion.

So what could I be? Somewhere on the very mild end of the spectrum? Not on the spectrum at all, but I merely have some personality quirks that are coincidentally in common in people who actually are? Something else? I'm pretty confused about it all. I'd think it would be odd to be entirely lacking in some symptoms and experiencing the others to fairly mild degrees if it were actually a form of autism. I'm hoping someone here is or was in the same boat and could give advice.

[-] [email protected] 5 points 2 years ago* (last edited 2 years ago)

I have no advice but I’m in a similar boat and would like to learn more. Until recently I thought most of my eccentricities were derived from my health problems but it seems they've actually evolved dialectically, and I'm wondering what else I've missed about myself.

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[-] [email protected] 8 points 2 years ago

I read that title to the tune of The Best Ever Death Metal Band in Denton.

Eh, ADHD as usual. Uploading a song a month for my New Year's Resolution. I really see learning an instrument as me "conquering" my ADHD. Like, I picked up a hobby and actually committed to it.

[-] [email protected] 7 points 2 years ago

Is there a word for never getting any ND diagnoses besides depression but "getting" most of the stuff you guys mention ITT?

I like to think I'm just an empathetic person, but sometimes it's really frustrating to feel lonely/dissociated/confused/overwhelmed and not have a distinct neurodivergence to point to and use to help address it. I basically do that already, figuring that it's all a spectrum and I'm just a sampler platter of a million neuroses, but it doesn't always work. Stims for instance just made me really stimulated but didn't give me the kinds of help that people with ADHD get from them.

Is eccentricity even a concept any more? It's usually the word I bring up to myself when I try to understand why I just spent a month thinking day and night about hagfish but managed to forget my wallet when I left my house.

[-] [email protected] 6 points 2 years ago

Eccentricity is probably what neurodivergence was called in the old times. Most of the traditionally "eccentric" traits are standard autistm, ADHD or OCD symptoms

[-] [email protected] 6 points 2 years ago

Taiwan is great and all but their restrictions on which adhd medications are available are almost as bad as Guatemala. I'm thankful I have enough Vyvanse to last the entire time I've been here.

[-] [email protected] 6 points 2 years ago

How are you medicated ND’s dealing with medication having less effect over time? I really don’t wat to go to a higher dose cause it feels like a slippery slope to me.

[-] [email protected] 7 points 2 years ago

Tolerance is a tricky thing.

One part is that short-lived mild euphoria that comes with starting/increasing stimulants which wears off after somewhere between a day and a week. That's sort of like a pseudo-tolerance thing.

One part is reaching a new normal and realising that your improvements have plateaued, that the meds work to alleviate ADHD symptoms to some extent but they do not eliminate them. It should be noted that if this describes your experience and you experience a rapid decline in your ability to manage your ADHD symptoms towards the end of the day or, if you menstruate, around the time of your period then you need to speak to your doctor about bumping up your meds.

In the literature there's a really broad divergence across who develops a genuine tolerance to meds - some shows it to be extremely low to being non-existent whereas elsewhere it is shown to be somewhat high. If a tolerance is going to develop it seems as though it should develop in the short term (i.e. within a 6 month period.)

If you have gained weight it's going to negatively affect stimulant efficacy.

One of the meds which can increase the effect of stimulant meds especially in ADHD is guanfacine and it's a really good augmentative med for stimulants (when it's tolerated) which I won't go into here but that might be an option to consider. Another is atomoxetine which works in a very different way from guanfacine but is generally less tolerated, although for the people who it works for it's a bit of a wonder drug going by reports. There are other meds which are off the beaten path for ADHD which are worth considering here too.

It could also be specific to the particular med you're taking and you might find that switching to another doesn't have the problem of tolerance. Note that if you're in the US that Adderall and Vyvanse are chemically very similar and if you're on one of them then I would anticipate that you wouldn't get any benefit in this regard from switching between those two. (If you can even get your hands on Vyvanse these days.)

One way that tolerance can be managed is by taking a break for a day to a few days, although this isn't always within reach of people due to lifestyle factors or their unmedicated baseline. Given the stimulant shortage which is now affecting the whole world (thanks DEA!), tolerance breaks on days where you are sick or you are sleeping in and taking a day off are a preventative measure because having a cache of extra meds tucked away somewhere can make a huge difference if you're faced with a shortage.

Without knowing more about your specific situation it's hard to determine what's at play here but if you want more info let me know and I can share what I know, although as always be cautious about how much personal info you put online. Tbh I feel like this one is going to be best managed by a prescribing doctor since there's are a lot of moving parts but I can give you broad advice and some things to consider.

[-] [email protected] 5 points 2 years ago

Thanks a lot for the elaborate response! In a few months I’ll hopefully get to talk to a psychiatrist about it (waiting lists are very long and untrustworthy). When I started taking the meds it really helped with my chronic fatigue, but after 1 or 2 years I feel like I’m back to where I started. For other symptoms the meds work fine I think. I was under the impression that tolerance build was normal, so I assumed that that was the cause for my returning symptoms. But there are many other possible reasons as well.

Luckily there’s currently no shortage of the medication I take where I live.

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[-] [email protected] 5 points 2 years ago

I can't say there's anything I feel needs to change. Thanks for all the work you put in!

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this post was submitted on 28 Dec 2023

118 points (100.0% liked)

neurodiverse

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What is Neurodivergence?

It's ADHD, Autism, OCD, schizophrenia, anxiety, depression, bi-polar, aspd, etc etc etc etc

“neurologically atypical patterns of thought or behavior”

So, it’s very broad, if you feel like it describes you then it does as far as we're concerned

Rules

1.) ableist language=post or comment will probably get removed (enforced case by case, some comments will be removed and restored due to complex situations). repeated use of ableist language=banned from comm and possibly site depending on severity. properly tagged posts with CW can use them for the purposes of discussing them

2.) always assume good faith when dealing with a fellow nd comrade especially due to lack of social awareness being a common symptom of neurodivergence

2.5) right to disengage is rigidly enforced. violations will get you purged from the comm. see rule 3 for explanation on appeals

3.) no talking over nd comrades about things you haven't personally experienced as a neurotypical chapo, you will be purged. If you're ND it is absolutely fine to give your own perspective if it conflicts with another's, but do so with empathy and the intention to learn about each other, not prove who's experience is valid. Appeal process is like appealing in user union but you dm the nd comrade you talked over with your appeal (so make it a good one) and then dm the mods with screenshot proof that you resolved it. fake screenies will get you banned from the site, we will confirm with the comrade you dm'd.

3.5) everyone has their own lived experiences, and to invalidate them is to post cringe. comments will be removed on a case by case basis depending on determined level of awareness and faith

4.) Interest Policing will not be tolerated in any form. Support your comrades in their joy!

Further rules to be added/ rules to be changed based on community input

RULES NOTE: For this community more than most we understand that the clarity and understandability of these rules is very important for allowing folks to feel comfortable, to that end please don't be afraid to be outspoken about amendments and addendums to these rules, as well as any we may have missed

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