Why actually autistic tag

I got a couple hits from someone searching "why actually autistic tag." I'm not entirely sure why I got those hits, because there are lots of Tumblr posts that answer the question directly and I haven't done so here yet. I'm not sure if I did on Tumblr either. But, if people are going to be finding my blog by asking that, I suppose it's relevant enough for me to try to answer.

So.

Once upon a time, stuff about autism was generally in the "autism" tag. It didn't work very well, because much as the autism tag is currently filled with people posting pictures of their siblings and children (often without mentioning that the person is OK with this, which is a problem for a lot of reasons) tagged with autism for no apparent reason, people using an autism tag as an insult for people they don't like, advertisements for Autism Speaks walks, and people talking about their autistic children and siblings as mysterious. All this is generally very tiresome for autistic people to read and dig through just to find a couple posts by actual autistic people about their own lives. Additionally, when we said things about how the assumption of "mysteriousness" or such othering descriptions were really not cool, if it was tagged "autism," there would be a pile of angry parents and siblings.

Basically, the "autism" tag was really unwelcoming for actual autistic people! It was all other people talking about their autistic relatives, generally in ways that squick autistic people. This is similar to the problems when autistic people tried to organize at conferences about autism run by non-autistic people. They really didn't like it when autistic people started talking to disagree with them.

So another tag started: "actually autistic" or "actuallyautistic." Both versions of the tag get used, a lot of people use them pretty much interchangeably, a lot of people use one or the other, a lot of people use both on any given relevant post. I don't know of any pattern relating to who uses which ones, but that doesn't mean there isn't one. That tag is meant as "the person posting this is themself autistic." Not everything on that tag is immediately and obviously autism related, but it's usually something that the poster thinks is related to their own autism. Sometimes it might be something that an autistic poster wants other autistic people to see, which is a pretty reasonable use of tags.

Organization-wise, Autism Women's Network (AWN) and The Autistic Self Advocacy Network (ASAN) both post there, and Parenting Autistic Children With Love and Acceptance (PACLA) sometimes will if the mod who's making the post is themself autistic (which might be all the tumblr mods?) Autistics Speaking Day and Autism Positivity flash blogs both post to the tags as well- these are autistic-run flash blogs. Having run the tumblrs for both on occasion, I only tag the autistic-written posts as actuallyautistic, generally. But since I'm autistic and autistic people sharing links to relevant things, autistic-written or not, has been a thing in the tag before, I don't worry too much about the ones where I'm not actually sure if the writer is autistic or not.

Anyways: The short version is that the autism tag was and is an unsafe place for many autistic people because folks didn't get that autistic people were following and reading and might be capable of having opinions on what we were reading, the actuallyautistic/ actually autistic tags are safer for some autistic people, and thus they exist. 

The Beginning of Her Hell

It's another short story! This time, I'm following an autistic girl named Leah, stopping in to take a look every so often from when she's about six months old through sometime in high school. Other people are... realistically terrible.

You can get The Beginning of Her Hell on Amazon for $0.99.

Image is of the cover of "The Beginning of Her Hell." The title is in orange text along with the author's name, Alyssa Hillary. The background is white, with a pair of blue eyes looking out over a typewriter.

Growing up into an Autistic adult

This is in the Down Wit Dat August 2014 Blog Hop, BTW. The theme is about how disabilities and such are a natural part of life. 

Well, at this point I'm 21, almost 22, so I'm definitely already an adult. I've been working part-time in math education since I was 17, almost 18, and I've done some other kinds of work (research, information technology, physics lab TA.) Also I just read Mel Bagg's What Not Changing Us Means.

When we say we don’t want to change, we’re incorporating all four dimensions in life already. We’re incorporating growth through time into our concept of the thing we don’t want changed. We’re saying “We don’t want to be changed” in the same way that a cat, faced with becoming a dog, would say “I don’t want to be changed.” The cat isn’t denying the important passage from kittenhood to adulthood. The cat is saying I want to grow as a cat, not a dog.

Basically this. (I mean a lot of other things, too, I really do suggest that you read sier post in addition to mine, or even that you read sier post first since a lot of what I'm doing here is responding or building or putting on some of the specifics as it applies to my growing up into an autistic adult, rather than a non-autistic adult.)

But also the responses. A recent New York Times article that I am not going to give the honor of linking because it is terrible (it thinks early intervention leading to a child losing their diagnosis is 1) good, and 2) going to last.)

Basically, it works under the idea that an autistic child growing up into a non-autistic adult is a good thing, which is a social and cultural and otherwise made by non-autistic "experts" assumption about how autistic people should live sort of assumption. It also works under the idea that if you can reach this sort of indistinguishability once, it will last. That's not accurate, BTW. Neurodivergent K talks about that in The tyranny of indistinguishability: performance better than I could, the essential point is that as demands increase the effort needed to emulate them increases and gets even further from autistic needs.

But because autistic development and non-autistic development look different, are moving towards different... slightly closer to stable than in childhood but still always changing adult areas, and because people tend to expect non-autistic development of autistic people rather than admitting cluelessness, there's an idea that we will get less obvious as we grow up when the opposite is more likely to be true.

Back to Mel's words and the cat/dog metaphor for one way that it works:

Quite frequently when they say that they sneak in something about making us into dogs, only they call that part of the growth from kittenhood into adulthood. “Sure, learn about stalking mice and stuff, I’ll give you that, as compromise or something, but hey, wag your tail when you’re happy, not when you’re mad. That’s the right way after all. You can’t deny change. Didn’t I just talk about important skills of the adult dog… er… I mean cat?”

 Don't flap your hands, it's silly/childish. Make eye contact. Use oral speech. Sit still. These are things expected for non-autistic development in the culture of my particular bit of the USA. (Eye contact expectations are hugely variable with culture. Signed languages have a long history, and they have been an acceptable alternative that most people know in quite a few places, for quite a few reasons.)

Because of how widespread those expectations are, I actually did learn to do a lot of that (iffily, badly, actually pretty easy to distinguish from my peers even though I've always, always, even still meet the definition of indistinguishable that Lovaas and co use: placement in a general educational classroom and at least one non-disabled friend, and can we talk about how this definition depends on the person still being a student?)

But.
In growing up into an autistic adult, I've stopped doing some of those things. I've started using the skills that I need for navigating the world as I am, rather than for trying to navigate the world while pretending to be non-autistic. (By Mel's metaphor, I've started switching out "adult dog" skills taught to me as universal "adult" skills for "adult cat" skills that serve my actual needs.)

I carry an AAC device- in my case, either my laptop with eSpeak or my iPad with Proloquo2Text (or just a notepad application when I was in China because I never figured out a Chinese text to speech on the iPad.) I have one of these things and a pen and paper on my person pretty much all the time. A side effect of knowing that I'm covered even if oral speech does give out on me, funnily enough, is that I'm more likely to retain the ability to speak, but that's not actually the purpose of carrying the devices. The reason is that I'm not always able to speak orally, and it's important for me to have a way to be understood even when I can't. My autistic body language, while very communicative for people who understand it, isn't reliable for this because people tend not to understand it. Folks have a tendency not to realize I'm upset or uncomfortable until I've actually melted down, which is too late as far as I'm concerned.

I carry a stim toy, a fidget, whatever you want to call it. It's usually a Tangle, Buckyballs, or a square of satin-bound blanket. Any one of these can take care of my need to be not-still. I've also used knitting and making chain mail for this (the armor kind, not the junk mail kind.) When I'm taking care of my need to be not-still in one of these ways, I'm less likely to pick at my skin, which means my face itches less. That's actually a big enough thing that once I realized the effect was there, it got added to my list of purposes for carrying a stim toy. [As opposed to being more likely to retain speech, which I don't care all that much about.] The original reason was being better able to center myself and also better able to concentrate on whatever I want to concentrate on, which has tended to be school stuff.

I don't dress like most people. I tend to go for either T-shirts and athletic shorts (both out of the mens section) or homemade dresses and skirts. In the case of skirts, the shirt might be homemade too, or it might be a T-shirt. The common factor is comfort- I'm talking about cotton knit dresses, the kind of dress people think of as for kids because adults use more "mature" and not-stretchy fabrics that aren't as comfortable and harder to keep clean. Don't even get me started on stockings. I have refused to wear them for as long as I have been able to enforce this refusal. Actually longer but until I turned 18 I could sometimes be overruled by a parent and that was terrible.

I flap and rock and spin and jump more openly now at 21 than I did at 12. At 12, I was still simultaneously trying to get my weirds read as deliberate and trying to be more typical, more indistinguishable, than is anywhere near sustainable for me to be. At 21, I know that while the "make it look like deliberate weirdness" carries some benefits, it also means people are better able to ask me to change it, which doesn't go well because I really can't. Not sustainably, anyways. I also know that trying to act like a non-autistic adult super-duper not sustainable. That's kind of the reason behind "I really can't" on the changing said weirdnesses.

People tend not to read me as autistic anyways, because autistic... adult? Does not compute. Autistic person with college degree? Does not compute. Autistic person... as the teacher? Computes even less. Autistic person... read as woman? What? That can't be a thing. And yet... here I am. Here we are, I should say, because it's not all that unusual. Fairly sure all those things apply to Neurodivergent K, for one example. Melanie Yeargeau for another. Ibby Grace, too.

But people not attaching the word autistic to the pretty noticeable differences?

1) Doesn't make the differences stop being a thing. I jump, rock, flap, spin, openly stim, etc. I've had at least three broken bones, none of which got diagnosed at the time and one of which was very explicitly a non-diagnosis due to my not acting like I was in enough pain- I went hiking on a broken foot without realizing it was broken. I use language weirdly. I ran a 5k barefoot once. My records are fairly littered with autistic traits that didn't get called that, which means that I had the differences and that they got noticed.

2) Doesn't mean they didn't notice the differences.  R****d was my bullies insult of choice fairly often, and definitely the one they went for when I was jumping and flapping my hands. Crazy and weird were the two "negative" words that anyone had to say about me in high school. One of my college professors commented that I speak in a "unique" way. Chad Stokes (State Radio, Dispatch) still remembers me as the person who ran the 5k barefoot.

3) Definitely doesn't make me somehow not autistic. Seriously, I have no idea how the idea of "If we don't say the word then she doesn't have it" is supposed to work, but something along those lines seems to have been the philosophy that made it take so long for me to get diagnosed. But yeah. In terms of stuff I do in my life, both online and off, I probably do count as that ideal result because I'm in general education classrooms and have friends. The reason I can do those things is that I don't try to act like I'm non-autistic. My classmates and teachers from my year in Tianjin can totally attest to just how obviously autistic I am. So calling "doing stuff as an adult" the same as "not autistic anymore" (in metaphor, calling "adult" the same as "adult dog") makes zero sense. Actually negative sense.

I'm an Autistic adult doing things. Not a magically-not-autistic-anymore adult because I am doing things. Seriously. Should. Not. Be. That. Hard. To. Accept.

On Knowing

There are parents, apparently, who don't tell their autistic children about the diagnosis because they are afraid their children will be bullied. That's not going to work, and depriving people of useful knowledge about themselves in a failed attempt to protect them from something else is just a really bad idea.

I understand the fear of being bullied. I really do. I was bullied, as a kid. A lot. Not as continuously or as obviously or as physically as, say, Neurodivergent K, but I was bullied. All through third grade, there was a pair of kids who would spend the entirety of chorus meetings using my literalism and dislike for errors against me and then call me ret*rded. They would step on my feet when they had the chance, too.
A teacher actually hit me with a book that year, too, because I was clumsy and hit my head on the slanted ceiling every day.

Everyone made fun of me for my really, really bad hiccups too. They'd insist that my hiccups making my jump was a purposeful thing "for attention" as opposed to something that... well, hiccups still sometimes make me jump. Part of that is my startle reflex, also a target for the bullies, and part of that is that the diaphragm is a strong muscle! Also my medical history does include a rare thing where the other people with it got really bad hiccups. Like, this is not me trying to get attention. There are better methods, like doing algebra at you while being nine. Hiccups just suck.

Here's the thing: this wasn't the result of me knowing I'm autistic. It wasn't the result of my parents knowing I'm autistic. It wasn't the result of my teachers knowing I'm autistic. It wasn't the result of my classmates knowing I'm autistic. I know this for a very simple reason: No one knew I was autistic. No one. Didn't stop the bullies.

Things actually got better once people knew, particularly once I knew but really it was people in general. My classmates this year were supportive and told me things like "My presentation has a video in it, bring headphones to class just in case" ahead of time. My teachers were supportive and told me things like "Email what you wrote to me after class" when speech goes kaput and I start typing instead, but don't actually ask a classmate to read it aloud for me.

Not everyone will be that good (they should be, but they won't) when there is a label. But the fact is, autistic people get bullied in ridiculously high numbers because people can tell we're different and decide that's an acceptable thing to prey on. That happens with or without an official label for the way that we're different. The label and the lack of a label can both be used as excuses for the bullying and the general terribleness, but neither is the actual problem. Telling us that we're autistic isn't going to make the bullying worse. (If our teachers are sufficiently terrible, telling them might make it worse, but telling us? No. That won't make it worse.)

My Memories of the Autreat Mess

Trigger Warning: I'm gonna go with gaslighting and access fails?

I'm doing it. I'm writing up my memory of the Autreat debacle. There's an official report on the ANI Facebook, which I can't link properly because of fun with my proxy and the Chinese internet. I'm bystander 2 in that, which is totally inaccurate but hey.

Heads up that K is Neurodivergent K of Radical Neurodivergence Speaking, since I know her blog URL here's that, as of this writing her write-up is in seven parts and the most recent stuff pile on her blog.

So here's my memory. Some of this is before Autreat.

I had K's thing about what to do if she's having a seizure. It's very much written in K's style, which is fine by me, I understand it fine. One of the things that stood out was that if she's having a seizure, people need to back off. Unless there's a reason that she must be touched, like about to walk into traffic, or if she's still in the room with the trigger, hands off, and if must move, slowly, carefully, calmly. Which means keep security, etc, off K's case in emergencies. We established that I would be a person who helped run interference in emergencies, keeping people away from K. That's background.

Now flash forward to Autreat, in the room where the incident began. Stuff is a bit fuzzy, because that happens when I'm overloaded, and also this was a while ago. I remember a not-particularly-coherent K sounding scared when there was a bass sound, and I remember her trying to get at medicine of some sort, and I remember her hands going over her ears. I remember someone going over to the TV to turn it down, and I remember that person getting yelled at. I also remember a lot of yelling happening after that. The first yelling was definitely the person being upset about the TV being turned down because of her daughter. I can say that much. Order gets a bit fuzzy. Speaking isn't a thing that was happening much for me, again, happens under stress. Pretty sure K was out of the room by the time a sarcastic comment was made by Shaun of “because autism means we can only care about ourselves,” which got responded to with “Exactly.” Not with a thing about etymology. Just agreement. At which point there was a question of, “If you think that, why are you here?” Again, not a statement. A question. Considering the statement that was just made and what Autreat is supposed to be about, a pretty reasonable question.

When K did the whole leaving the room thing, the person who yelled about the TV being turned down at least started standing up. So I was pretty sure that this was a move to follow. So I put myself such that to get from sitting on the couch to the door, she'd have to go through me. Not attacking her, which is probably why I got called a bystander and not a support person, even though I was doing exactly the support job that I was supposed to be doing, but hey. It also might have something to do with my never having yelled directly at this person, which shouldn't be a defining factor of who is and isn't a support person for K. Really shouldn't. Those are guesses for why I might have gotten called bystander 2 in the official report, but I'm not actually sure. Not a mind reader, can't know. What I know is that it's not accurate.

Yelling yelling yelling, couch person yes acting like she might be triggered, bystander in the kitchen area acting possibly triggered and I think saying openly that she was, and me being a bit confused because why would someone who has their PTSD triggered by yelling be the one to start the yelling? I mean, people getting angry and forgetting stuff like their own limits happens, yes, but it's still a little confusing to watch a person do that.

Eventually leave kitchen and I forget what.

Eventually text from friend of K using K's phone (I know this because I just checked my phone text history.) Go find K, who I think is in common area of her floor crying at this point? Help acquire food for her and also acquire own food, per request of K's friend. Food important. People coming, people going. Time passing. Meeting. Lots of yelling about not assigning intentions. Sometimes this happened after person repeating intentions that person doing action had actually stated, which isn't actually assigning intentions. It's taking word on intentions. Lots of suggesting that thing is about use of common space. Which yes, is problem, but big problem is about how to handle access violations once they come up. [And seriously what is with refusal to accept that TV is a want and not a need? I do not understand, but as I'm not a mind-reader I'm not going to understand. But yes, that was one of the things that we weren't allowed to say, that TV is a want and not a need. Also question about adult daughter's agency, which, um, no one's talking about what she did because she didn't do the things that were problems?]

Lots of confused. Lot's of K crying. Lots of “NO DON'T REDUCE THIS TO USE OF COMMON AREAS.” Because yeah, that's a thing. But there's a lot more than use of common areas. Use of common areas could have prevented the thing, but this was about how to handle access issues once they happened, I think. And went badly.

Lots of discussion of how triggered person who yelled about the TV being turned down was. Not so much about how K could easily have wound up in the ER, and how “you're not going to die” is a thing that was said to a person who's been clinically dead from seizures before. Suggestions that statement of daughter having seizures was meant as understanding the problem. Given demonstration of not understanding (see also: you're not going to die,) would be a false demonstration if so. Again, not mind reader, but is pretty clear that telling a person with epilepsy who has been clinically dead of seizure before that they're not going to die indicates a lack of understanding.

Um. More discussion. Goes to very late. Not good- lack of sleep can make epilepsy stuff worse, I remember this from another time I was with K.

Morning. I see text from K, and respond assuming that I missed a text from last night. Nope. Is text from this morning. K crying, not sure she feels safe to leave room to come meet with me and another person related to a meetingful thing I don't even remember properly. I know there was supposed to be a meeting because text records, and also that K says she is feeling gaslit. I think I help acquire the soggy breakfast for K before spending much of morning in K's room, but am not sure 100%. I know I got to attempt eating said soggy not that great breakfast, and yeah, it was soggy before the rain got on it too. That day was not a good breakfast.

Spend morning with K. Lots of crying happening, decent bit of K hitting head against wall and saying she wanted to go home and being triggered and being in meltdown. I admit that I am impressed with her ability to maintain crying that long, as I become exhausted much faster than that. I also try to be comforting. I don't think it worked very well. Apparently my saying that I'd understand if she left and couldn't be my first witness made her feel really bad about maybe not being able to do it. My understanding was a sign of my being a decent enough person for her to care, or something similar. My memory is a bit foggy, but it was something along those lines, and this is her having said something of the sort, not me mind-reading it. Also, there was wailing of “I don't know.” There was a lot of that. And being afraid to leave room unless it was to go to the airport and get on a plane home.

Go acquire food for people- I am in the Subway contingent that acquires food for many room people. I think we got a total of 4 sandwiches, including mine an Ks and also one for the person who was driving. One other, and yes, I know who, but don't know if she's cool with name reveal so I won't.

Eventually there is a Jim. Who isn't going to apologize for the gaslightyness, or for much of anything if I understand correctly. Which, hey, at least honest, since fake apology is bad and K's pretty clear about not wanting those. But also suggests not understanding what went wrong. I wasn't processing in real time for this, and the only person who was, Jim said either that person or Jim had to leave. After wailing “I don't know” from K multiple times, another person suggests maybe that person leaves. I will take K's word for it that the kicked out person's name is Shaun, and that this person is cool with name being open. Shaun looks at K, asks “Is this what you want.” K wails “I don't know” yet again. There has been a lot of wailing of “I don't know” this morning and into afternoon. Starting to wonder if there are any other phrases K can currently access, at this point. Which is bad sign. Focus is very much on “there are number of people waiting for presentation” and not so much on “how to we make K feel safe.” That's not a good sign. K moves from wailing to moving really fast, but since I'm not processing in real time I don't quite get what's going on.

Go to presentation room with K. K gives presentation. It is very good. Apparently this is because K's autopilot is very well-tuned. That good of an auto-pilot does not happen for good reasons. Text record suggests that swimming happened in between presentation- for sure that I did that, possibly K too, but I don't remember if she did or not. I shower, brush hair, go to K's room and K fancy-braids my hair.

Nothing bad particularly happens at 5A, though I was only semi-coherent for it. Usually I can make words off the cuff pretty well, but not then. So I was left with not the words I was was expecting to have.

I spent sufficiently much time in K's room instead of mine helping her try to feel even a little bit safer during Autreat that all my chargers were in her room instead of mine. I think that should say something.

More Upset, More Targeted, Both?

Trigger warning: r-slur (censored), bullying

ThAutcast does seem to give me a decent bit of post fodder, which is cool. ThAutcast also links to me on occasion, so I guess we kind of interact. This time, the status that got me thinking is about bullying.

Why might someone on the spectrum be more upset by bullying then a non autistic peer?

There are many, many reasons that an Autistic victim of bullying could be or appear more upset by any given bullying incident. It's not exactly news that our body language can be hard for neurotypicals to read, and we could appear more or less upset than we really are. We could be already overloaded by the time the bullying happens, and so it could be the final straw for a major meltdown. It could be that we don't understand why we were targeted.

Or... maybe we seem more upset because we're reacting to more bullying and less support.

Maybe we're the favorite target, and that means we have more incidents of bullying to deal with. Maybe it's more often. Maybe it's more severe. Maybe the bullies are getting bolder and bolder as our teachers turn a blind eye. Maybe we're taking the bullies at their word when our neurotypical peers can detect what is exaggeration and what needs to be taken seriously. I know that all happened to me. 

I know that when I was in third grade, I was called a r***** on a weekly basis at least, sometimes more. I know that I was chased around the playground by people who insisted that they were going to take me captive and blow me up with a bomb. I believed them. But the teachers thought it was a game, and nothing was done. My terror was thought to be faked, I suppose? Or maybe they couldn't read my body language. There was a slanted ceiling in the classroom where I had language arts. I hit my head on it every day. (I might be dyspraxic on top of Autistic. Just saying.) My classmates made fun of me for it. My teachers made fun of me for it. They could have changed my seat to one of the ones where I couldn't hit my head. They didn't. 

Some of my friends have heard the story of the worst day with that. I... I lied a bit on it. The final book didn't fall off the bookshelf from my knocking the bookshelf. After watching me bump and crash into things and hit my head on the ceiling every day, there was one day when I crashed into more things than usual. Head to the ceiling, then elbow to the table as I knelt to get my books, back and head to the bottom of my chair, back to the bookshelf, elbow to the bookshelf. And then my teacher hit me (gently, but still) over the head with a book, while I was still on the ground, wincing from all the others. Yes, I hit my head on the ceiling again when I stood up a second time. He laughed. When I got back to the main class, I told my main teacher. She laughed too, just as she had all the times my own clumsiness had been the final cause. (Yes, this was a different classroom that about ten of us were in, which was about a third of the grade.)

I've since been told that it was an "advanced" class that I was in, but I don't know that my classmates knew that the people getting pulled out were supposed to be more advanced. They might have? It didn't stop them calling me r*****, either way. The fact that I got 100% on all my spelling tests for the first almost half the year didn't stop them either. The time that I was math challenge champion by default, when I was the only one who got it right? That didn't stop them either.

Nor did my teachers stop them.

Even when they started stepping on my feet, my teachers didn't do anything. Nothing. When I stepped on their feet back, finally, on the last day of school, I was the one who was spoken too. Not them, me. 

Or they imitated my jumping and flapping as they called me r*****, or they imitated the way that my hiccups made me jump, insisting all the while that it was on purpose. It wasn't. My hiccups still make me jump, and I've got about twice the mass now that I did then. 

Maybe we actually do get more upset, I could believe it. But maybe, just maybe, we're taking more bullying and having more people as sources of bullying (remember, the teachers are doing it too and turning a blind eye to the students!) If there is more bullying to react to, there can be more upset without it being more per amount of bullying.