Note For Anyone Writing About Me

I got blogger working again using a different proxy. It'd still be nice if people liked my Facebook, but you don't need to look at it to get posts anymore.
For anyone who wants to write about me
I am an Autistic person. I am not a person with autism. Don't call me one.
My name is Alyssa, I'm a triple major in mathematics, mechanical engineering, and Chinese. I'm currently studying abroad in Tianjin. I have an About. I'm Autistic. I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Tuesday, September 2, 2014

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. 

Sunday, August 31, 2014

Language and Interaction, Online and Offline

Something I've noticed different between online and offline is reactions when I say things.
Especially about language.

I say offline/online rather than online/real world because the internet is a subset of the real world. "Digital" doesn't mean "not real" any more than "socially constructed" means "not real"- that is, it's real, it exists, but there's a certain limit on where you'll run into it.

Anyways.

Online, I hear a lot of "not like my child." I hear a lot of "so high functioning." I hear a lot of "You mean a person with autism."

Offline... at least in the offline places where I am, not so much. It might be more about the types of spaces I'm in offline versus online, in that offline, disability services is about the most disability-centric place I wind up on even a semi-regular basis.

I get a lot more "Oh, I'd love it if you could talk to my kid, he doesn't know any adults with autism," and I semi-joke "Oh, he still won't, I'm an Autistic adult. Very different, you understand." And they maybe ask why, maybe don't, but they don't insist I'm calling myself the wrong thing usually. At least, they haven't done it at me yet.

I do get a lot of "I couldn't tell," still, but it's always followed by "huh, you're right" when I point out that the descriptions they'd see in media are mostly little white boys rocking and screaming in the corner, not, well, adults.

I get a lot more "I never thought about that" when I say... often times the same words about disliking the word "differently abled" or "assistive tech" (though in assistive tech's case I'm not sure what to replace it with, for differently abled I just don't use it because it was already a euphemism for disabled.)

What got me thinking about this was the comments section on X Years of Experience (actually a nice short discussion) and how that seems to be unusual. Whereas that kind of discussion isn't all that unusual when I get disability related topics going offline in places that weren't disability-themed before.  I'm  not sure what that means (other than that I'm pretty lucky to be surrounded mostly by not-terrible offline.)

Saturday, August 30, 2014

Being a teacher who can't always speak

Today, I did something that's kinda hard, and kinda scary, and kinda risky. I told the department chair (so basically my boss, because I'm a teaching assistant and he's also coordinating the course I'm teaching) that I'm not always able to speak. I also told him what my backup plan is for those times (it's a pretty good backup.)

It went fine, by the way.

But I wanted to write a bit about what I think made me so lucky there, because there's some things I was able to pull off that not every disabled person can do, and these are relevant things! And it's not fair, and it deserves talking about. So does the fact that even with all the things I have working in my favor, it wasn't actually guaranteed that I'd get the good result I got.

Thing the first: I did my undergrad partially in this department (and partially in other departments in the same school.) That means that everyone in the department already knew who I was, and most of them actually knew me. I was that freshman who somehow managed to end up tutoring Real Analysis. What this means is that I got the chance to prove my ability as a tutor and as a student before anyone knew that the disabled side also exists.

Thing the second: I don't have big bulky tech that is obviously coded as "for disabled people" on my person... ever. My text to speech is on my laptop, which is a pretty common thing for a college student or grad student to own and carry with them. This means that my assistive tech's status as helping me with an aspect of my disability isn't clear until I start using it for that. I do a lot of other things with my laptop, same as most students do a lot of things with their laptops.

Thing the third: While someone who knows common traits and has a good idea what the tip-offs are for autistic adults will find me not even a little bit subtle, most people don't immediately know that I'm disabled upon talking to me. If they could tell immediately, my "pass for a little bit, then mention that I'm disabled a bit before I need any accommodations" method would be impossible to actually do.

Thing the fourth: I got lucky. Even when all the other things line up well, luck of the draw is still huge. (Luck of the draw may not be enough when the other stuff doesn't line up.) My department chair's initial reaction was to ask what he/the department would be able to do to help, and that I should let them know if I needed anything. I actually don't need much from them: I need them to not take issue if they see me using my text-to-speech in the classroom or if they find out about my using it. I need them to have my back if someone else takes issue with the use of text-to-speech.

What I've got:
  1. Departmental not-taking issue and backup if someone else takes issue.
  2. Offer that if speech is kaput I can text the office and they'll send another TA over if needed. (Probably not needed, the point of my backup methods is that I can keep teaching even is speech goes kaput.)
  3. Statement that if my classroom's speakers turn out to be randomly incompatible with my text to speech/audio output, they'll get me moved into a classroom with compatible speakers. 
That's actually more than I asked for, but it's all stuff that's a good idea on their part. I want to get it in writing because a big piece of this was crossing my t's and dotting my i's to cover my hide from any potential students taking issue, so I will want to talk to disability services, but yeah. Seems to be working OK in my case, and my main issue is "So the solutions on the practicality side all exist, why is this sort of thing unusual enough that none of the classroom media assistance people had heard of sticking text-to-speech into the audio system?" My secondary issue is "So um maybe enough education that the phone isn't the first method of contact suggested for the event of speech going kaput would be good?" Because that was suggested before texting was, and if I can't speak, I can't phone. (Not that I do well with phones when I can speak, but...)

Friday, August 29, 2014

Carnival of Aces: The Unassailable Asexual

That's the theme. It's not what I am. One of the pretty common things folks say to try to invalidate asexual identities is "you're all just autistic." Unfortunately often, the group response is "We're not just autistic," which, um, some of us are Autistic and asexual. This is a combination that exists. (There's a difference between a person stating that they personally aren't autistic as a factual correction and someone playing into the idea that autism means "fake" asexual while defending themselves from that trope. Disability and Asexuality might have been the theme I went with when I hosted the carnival, and by might I mean totally was.)

Since I'm not entirely sure where to start on this idea, I'm borrowing a bit from "Oh the stars you can earn!" By that, I mean I'm going to go through each of the stars there, explain briefly why I do, don't, or kinda get this star, and any effect that I think that has on me. Or whatever comes to mind from reading about that star.

The GOLD star: "You do not resemble someone who is broken."

I don't think neurodivergence means broken, but enough people do that I completely and totally fail to earn this one. But I fail in a way that assumes nonsexuality (more like the way children aren't sexual) than asexuality. I guess it's sort of an assumption of not entirely understanding sexuality?
Also school abuse has happened.
So yeah, I don't have this one, not even close. But mostly it's occasionally made me feel like a bad disabled person (that whole nonsexuality thing) rather than messing with the asexual identity directly.

The SILVER star: "You have certain knowledge."

Well, certain enough for me. I don't have a sex drive, I don't have a desire for sex, and on top of that, it seems like I've got sensory issues in that area. (I think that means I get to dig up my gold star, reanimate it, and kill it again?)
That means certain enough that I'm happy to just tell people to shut up until they have a clue if they get splainey, but meh on them actually listening. This whole being 22 thing, it's a thing.

The BLUE star: "You conform to societal norms."

Eh. Not really? My gender is weird. I don't entirely get it. But it's definitely not binary. I'll get back to you when I have a clue. But I do fall in love, I think. Also, what is desire to see people face to face?

The RED star: "You are different from the norm."

In a lot of ways, yeah.

The RAINBOW star: "You conform to subcultural norms."

Yeah, probably. I fit in fairly well in a lot of autistic spaces, as long as they are ones where being asexual is an accepted thing as well.

The GIANT BALL OF GAS star: "You conform to 'the way things work.'"

NOPE.
I am gender-weird, but was absent from high school more days than I wore not-a-dress-or-skirt. Not because of a uniform. I just like dresses and skirts for sensory reasons. It's a very nice woosh, and they are loose and long and it's great. Jeans are sensory terrible. Therefore skirts and dresses.
Or sex just sounds terrible to me. I'm not the opposite of desire as indifference. I'm WHY NO GO AWAY.
Or I like my hair long.
Or I'm actually kinda into (funky) fashion design.
Also I was in tenor bass choir as a tenor second, only chick-like person on Ultimate Frisbee, yadayada.
Oh, also I was simultaneously the slowest person on the cross-country team and the captain. That's not 'how things work.'

The BLACK star: "You conform to asexual community narratives."

Eh. There's a "but I like pleasing my partner" narrative that, well, no. I really didn't have much of a thing for that. He wanted to be able to please me, but in this particular area the only way to do that is just never need to go there, and it was incompatible, and that was actually part of why we decided to go back to being good friends. Which we still are, by the way.
There's also one about cheerleading sex for other people. I don't want to hear about it. I don't usually like romance subplots. I don't like movie kissing. I see folks writing about how people make a fuss about open same-gender displays of affection but not different-gender displays of affection? I know that's absolutely a thing, I see the reactions all the time. Totally not going to argue with the pattern. As an asexual person who is NOPE on the sex, I actually do avoid the different-gender displays in media. Often more than the same-gender ones, actually, because the same-gender ones are at least written with fewer sappy tropes, usually.

The PURPLE star: "You represent asexual demographics or asexual diversity."

I... think that applies to everyone?
WHO DOES THIS NOT COVER?
I mean, without being not-asexual. 


Thursday, August 28, 2014

X Years of Experience

As an Autistic adult, when I see a professional listing some large number of years experience working with autistic children (or working with children with autism, that bit of language worry isn't the one I'm talking about right now,) I get kinda nervous. I don't really want to use that professional.

I've done some thinking about why, and there's a few bits.

Bit the first: children.

Why children? Is this a hint that the person thinks of all autistic people as children, regardless of age? If it's that, run far and run fast. That's extremely unsafe, both because the way children are treated is messed up and because the idea that we're children forever is just factually inaccurate. Even if I were working with the same set of cognitive tools now as I was at 5 (I'm not,) the extra 16 years working with them makes a big difference.

And if it's not that, if it really is that they only worked with autistic children, why did they only work with autistic children? There are answers to this that are OK, psychologists specializing in children's issues having autistic children be a specific subset of children they work with a lot is a thing. But. There are also a lot of answers to this that are worrisome.

Like, "Autistic people who worked with this person as a kid ran as soon as they could." That's not a good sign. Or if the person actually really worked with parents, that's a worry- that's an issue Neurodivergent K ran into when she was trying to get services. Places said they only worked with parents.

And whatever the reason, if they only ever worked with autistic kids... they probably don't know enough about autistic adults to be much more help to me than someone who knows they're clueless about autism. They probably don't love hearing it, but it's true. Autistic children and autistic adults are not the same! We have different issues, have different goals, have different priorities.

Bit the next: working with autistic, as it tends to mean.

Unfortunately, we live in a world where "working with autistic people" tends to mean "teaching autistic people to look less autistic" or "teaching autistic people to be obedient." That actually applies for a lot of disabilities, it's just that autism is the one where I have the most opportunity to know it.

This is pretty directly opposed to what I actually need. Hiding my autistic traits takes energy I don't really have to spend, and spending lots of time and energy explaining why is only worth while if I'm actually going to get help of the sort I do need out of it.

Bit the last: experience.

Remember that the experience is in the things I just talked about. That means it's going to be experience in deciding what an autistic person needs for them, deciding how to accomplish that goal, and enforcing it, probably with a good bit of talking over the autistic person.

Do I really want someone with large X number of years experience talking over autistic people with the idea of making us act less autistic to be the one "helping" me deal with the mismatches between me and the neurotypical-dominated world?