New here and very interested. I will admit to feeling guilty when I initially read this. I was diagnosed level 1 (with ADHD) at age 46. My younger brother however would likely be a level 2, so I do know there are differences that “certain days” cannot pertain to.
I’m sure there is much ableism, even in an autistic community. For me, I feel like defining my low needs days and high needs days isn’t me changing my diagnosis level, but explaining the level of my personal need level. I don’t know that I’ve used the terms in the way discussed in this post, but I will be more aware going forward because I can see how it would be inappropriate.
Thank you for sharing your feelings and it didn’t feel like a rant :). I felt it was very enlightening!
something that’s also important to point out is support needs are an average of what they are like therefore they can’t fluctate from day to day only over lnoger periods of time. and going changing fully from level isnt’ super common especially by the time you are a teenager. Most peopel stay that level theire tnire lives. maybe going form high level 2 to low level 3 or something along thsoe line drastic changes in support needs are rare. and usually only happen related ot autistic catatonia or autsitic regression (not burnout child disintegrative disorder stuff) or if they are lucky and rapidly develop and catch up to near their peers. It’s not incredibly common it does happen but it’s usually over hte course of atleast months if not years.
I am not the target audience, as I am a level 1. I was mostly a lurker in r/SpicyAutism, as I was curious about how autism affected higher support needs people. I honestly plan to use this community for similar purposes (as a medium for learning authentic first-hand experiences).
Something I never really saw on SpicyAutism, however, were links to helpful posts. There is a lot of misinformation about autism online, and having an easily accessible repository of anecdotes from higher support needs autistics would help combat that. It could also avoid infighting concerning terminology (which I'd observed as SpicyAutism started to grow).
I also noticed that a lot of people in SpicyAutism seemed to be slightly confused about the level system or support needs system—perhaps there could be an article on that as well.
I think part of the problem si most of hte audience in spicy autism was lurkers and i'mb ecoming frustrated cause no one is posting but it's rather normal as like 90% of the peopel on spicy autims either rarely post or are lurkers
Taking off a completely new subreddit/channel is pretty difficult and it often fails. Usually, the creator of the place has to keep posting content for weeks or months to even reassure others that there's a chance for the place to remain active, and that still doesn't guarantee anything. Unless the place has a name that people will naturally seek (for instance: "Autism", "ADHD", "Neurodivergence"), you have to put in effort to convince people to give it a chance.
I think part of the problem wtih spicy autism ist hey moderation team isn't that good an d they often let people get away with spreading msiifnromation and being ableist.
the rpobelm with htis is as a high support needs ausitic person it's very difficult to put things like this in motion cause it takes oto much energy. we might be abl to maek a post with defintions and pin it. We cana lso take a harder stance on misinformaiton than spciy autsim did in which tehy didnt' take too much of a stance on it from wat i remember. Also teh spicy autism mod team falsely banned me adn accused me of very bad things which i dind't do. We should work together to make something better but they insist on burning the bridge.
I have seen the blog post that you linked in the other comment!
we might be abl to maek a post with defintions and pin it.
This was closer to what I meant, though. There was a lot of discourse surrounding what exactly terms like "nonspeaking" meant.
As for the mod team, it seems like it's only you so far—perhaps bringing in another higher support needs autistic or a parent who takes care of a higher support needs autistic would help with that (similar to what SpicyAutism did). I don't know the full story behind the SpicyAutism banning, however, so I can't say much about that.
Idk, i'm not sure how good of an idea it is to make a parent mod. Alot of people including me thinks it's a bit problematic. Like spicy autism is n't a plce for parents. they are guests. Much like i woudln't expect the r/autsim_parenting sub to have a level 3 mod. I don't think it's nessicary for a hig support needs mod to be here. me and the c/autism mods have been talking about ways we can keep the subs from beinga each others throats. As it grows larger i'll bring people on as mod. I guess i could bring some mods from the discord/matrix/revolt server in to the subreddit. Which is likely what iw ill end up doing. Things we've discussed to help rpomote unity is bringing me on as amod as a level3 to represnet the higher supportneeds people, and also making policies and taking a harder stance against abliems towards high support eneds people. I'm willing working to grow arctic autism into something bigger. We've open up our discord to the public before it was invite online. (I was nervous to do so because i worried it might invite the wrong crowd) As a result we have adopted a screening process. I'm really not so sure if we should have an autism parent mod, that's partially cause the parent mod on spicy autsim was extremely nasty and passive aggresive to me and threatened me and stuff.
Much like i woudln’t expect the r/autsim_parenting sub to have a level 3 mod.
Good point, that. Regarding your last point, however, not every parent will be "nasty"—that was one person. Just something to keep in mind if you reconsider this.
Honestly, what you've said here is pretty reasonable, and it's nice that the two communities are partnered. You seem really passionate about this. ^-^
I think a problem with a parent being a mod is whether they are also Autistic or whether they are only allistic.
If they are allistic, they are more likely to follow along with what's "socially acceptable" rather than how autistics think and what autistics need.
There are rules that are easy enough to mod and follow like "don't name call" or something like that. But there are other things that are more acceptable to Autistics that Allistics (who don't have autism) don't find acceptable. This can cause problems.
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