In which I blither about stimming.
In which I blither about stimming.
Hey, if you post about autism/asperger’s syndrome, trans* issues, feminism and/or D&D could you please like/reblog this so I can check out your blog?
I post mainly autism stuff (and arty stuff and a bit of Who fandom.)
Not a god damn thing.
I think I missed this episode.
It’s one thing if you choose to post embarrassing photos of yourself on Facebook, tweet wild political hypotheses or make your tumblr a nest of TMI. But it’s quite another to share your child’s embarrassments, weaknesses or private moments with the world. While adults are old enough to make those decisions for themselves, children aren’t.
Information travels. Just as embarrassing photos and tweets have a habit of popping up again and again like floating turds even when the original’s long since deleted, anything on the internet becomes a rogue element, not entirely under your control. So by posting a picture of your child’s meltdown or nappy accident, for instance, you can’t be sure that in time that photo won’t be seen by kids at school. Or potential friends or partners. Or would-be employers.
That becomes a bigger issue when the child in question is autistic. Because for some reason, the rules seem to be different for autistic kids. It seems to be OK to share our every dark moment and personal secret with the world, all sorts of things that (I hope) the parents of neurotypical children wouldn’t dream of sharing.
I spend more time browsing the #autism tags on Twitter and Tumblr than I should, considering they often make me quite cross. While I’ve been there, I’ve seen posts about masturbation, menstruation and meltdowns. I’ve read about strangers’ children’s preferences for underwear (or the lack thereof), and reports of toileting more detailed than seems strictly necessary. Much of it’s posted by people using their real name, or an account that’s able to be traced back to their offline selves - by extension making their child’s identity discoverable as well.
Do you really want the world knowing your kid doesn’t wear undies? Is it safe for the child to have that information in the public domain? Would the parents have shared that information if the child were neurotypical?
There does need to be a place where parents can talk about these things; the gross, icky, scatological, NSFW things that only a parent would know or understand. There does need to be a safe space, without judgement, where they can ask “is it normal that…”, “how do you handle…”, “how old was yours when…”, “what should I do when…”, “…should it be green?”
But that place shouldn’t be public, because a public space can never be truly safe for that kind of information. You don’t know who else is lurking, listening, or even just wandering through thanks to a misdirected Google search. You don’t know who’s going to see that photo, that rant, that description of that particular incident, or what they’re going to do with it.
Besides which, being autistic’s hard enough as it is. We have to contend with enough challenges, enough social awkwardness, enough bullying and ostracism and general shenanigans, without having to worry that the whole school knows we’re 17 and still wearing Scooby Doo underoos.
Kids deserve some privacy.
Self promotion alert: Letters from Aspergia now has ads on it.
Now my autistic ass is unemployed, it’s really time the site started bringing a little cash in for Momma. I‘ve kept the site ad-free until now, other than a brief test of the system a few months ago, but now it’s time to see if it’ll work for realsies.
Project Wonderful works on a bidding system - the more bids, the higher the price for the ad. At the moment there are no bids (because it’s brand new) so ads are FREE.
So, if you want to get your ad in front of 3K eyeballs a month, for nothing, here’s your chance.
Visit Letters from Aspergia and click on the ad space you’d like to rent to get started.
Also, yeah. Disabled. Unemployed. Short on cash. I’m a worthy cause. Pls??
Remember that post about disability-related Advice Animals? It’s now A Thing on the ABC Open site. (Please ignore my very old headshot!)
Being autistic, every day is like being in a foreign country, where you don’t speak the language - even if you know the words, there might be many layers of subtext and meaning you miss - and you don’t know the customs. And, importantly, everyone else does. You’re not one of a band of merry travellers all getting it wrong together and having wacky hijinks along the way; you’re on your own, a stranger in a strange land.
For instance, there’s some sort of telepathy used in crowded areas to communicate between pedestrians on a collision course, which sorts out who’s going to veer which way so they don’t bump into each other. If you don’t have that telepathic knack you’ll bump into people and they’ll think you’re rude, or you’ll do a shuffly to-and-fro dance as you both end up veering the same way and then both react and veer the other way, and they’ll think you’re fucking with them.
The people in this land seem to have strangely dulled senses, so to compensate everything is very BRIGHT and very LOUD and very FAST. Everything’s bitter or sour or scratchy or painful and the smell is unbelievable. And the pace! It never stops - these people never stop moving and doing and talking. It’s a constant blur of motion day and night and if you can’t keep up, you’ll be thought lazy or feckless or stupid.
Sometimes you may even find gravity or space and time doesn’t work right in this strange land. You struggle to judge distance and bump into doorways or people, what looks like a slight dip is actually a pothole and you fall when you step into it, you grasp things too tightly and break them, or too loosely and drop them. You will be clumsy, and the locals who glide through this strange and erratic atmosphere will mock you for this.
The people in this strange land can communicate vast amounts of information with a single syllable. While they’re speaking they’re also doing a complicated dance made up of myriad tiny gestures, they’re making facial expressions so finely coded that a millimetric shift of an of eyebrow means more than would fit in a set of encyclopaedias, and they’re calling in cultural references that may sail completely over your head because it’s not your culture.
All the locals of this strange land understand this stuff - the dance, the expressions, the culture, the telepathy - so intimately, and take it so for granted, that they don’t even recognise it as as a thing. They can’t understand that you don’t know the dance, because the dance comes so naturally to them they don’t even realise they’re doing it.
At best, you’ll find a niche for yourself and make yourself a name, and be celebrated as an eccentric genius. At worst you’ll be killed long before you have a chance to do that. In the middle, there’s a lot of lonely ground where the residents of this strange land will assume you’re rude, or unfriendly, or mad, or stupid, or wilfully difficult. Maybe you are. But you’re probably not. You’re probably a perfectly decent human being, quiet and gentle natured and friendly, as sane as one can be trapped in a land that’s not your own.
I don’t know if there is another land, a homeland, a place where all we misplaced travellers belong. Sometimes I think there must be; there are too many of us for us all to be random quirks of fate. But sometimes I think we’re as different from each other as we are from the natives of this land, that there must be myriad homelands, a different place for each of us to belong.
Or maybe there’s just here. Just this one land, and it’s up to us to make it our homeland; to make it a place where we belong and are safe. This strange land is not home. But perhaps it could be, with time and effort. It’ll be difficult, but perhaps it can be done. Perhaps this strange land could be our homeland after all.
Why organised school sport put me off sport for life: a rant.
So, I found some sea glass on the beach. Also a spirit level, a toy car, part of a fence and a wedding proposal.
I went to my first Adults with Aspergers support group today and I am so glad that I did. The group here was organized by a couple who both have ASD. The idea was to create a sensory friendly, safe place for adults on the Autism Spectrum to meet and discuss matters that are important to them. There are so few programs out there for adults on the spectrum and they wanted to help others like them socialize. We were all diagnosed as adults and our ages ranged from late 20s-early 30s to retirement age. It was so nice to be in a group where everyone felt comfortable talking and no one cared that no one was making eye contact. It was a small group and a few of us were stimming out of excitement or tension from bringing up difficult memories. There were no odd looks or uncomfortable comments from anyone.
Normally when I attend a social gathering I get so overloaded and exhausted that all I want to do is crawl into bed with my computer and shut out the world. It wasn’t that way this time. I felt good leaving the meeting. I didn’t feel overloaded or exhausted. What I did feel was a sense of inclusion and kinship. We understood each other and we never had to struggle with communication issues. It was really nice. I am looking forward to the next meeting.
I really wish these existed near me :(
Same. All that’s around these parts are “tea and chat” groups for parents of small children.
I learned to talk by cutting and pasting echolalia together.
I still think and talk by cutting and pasting echolalia together.
So it really scares me when people ignore or deem meaningless communication that they deem to be echolalia.
Same here. I was (apparently) verbal sort-of on schedule, but it was actually mostly echolalia. Writing was a little more autonomous, bue echolalia-from-books (it probably has its own term?) was a thing too. It was a loooooooong road from there to actual autonomous self-directed expression.
I still cut and paste. In coffee shops, for instance, my mouth usually orders a hotchocolatewithmarshmallowsplease because my brain’s checked out from the noise and the movement.
“You must be so high functioning” always comes with an implicit “or else”.
Image description: (I’m crap at these, so please bear with me) I type “autism support Rockhampton” into Google. The result is a series of pages talking about “children under five”… “early intervention centre”… “for families and carers of children with ASDs”… and a closed Facebook group. I look sad. I try again, this time typing “aspergers Rockhampton” into Google. The results include “Aspergers game club for kids 10-14” and a news article that starts “[name reacted] remembers the day she realised her daughter [name redacted] was different from other children.” Then I see a link “Rockhampton - adults with Aspergers meetup”. I look happy, and click on it. However, when I click on the link it has no information other than to say “zero people are on the adults with Aspergers meetup waiting list”. The caption says “are you shitting me?” A LOL-ing trollface asks “why not start your own group?” I look angry, and say “why not NO.” I give up looking for autism groups, and move on to search for “Rockhampton arts groups”. There are about 1.25 million results. I leave to get my art on.