Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Zisk, Alyssa Hillary. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Zisk, A. H. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from

Wednesday, December 24, 2014

Disability in Science Fiction notes: part 2

Still reading Disability in Science Fiction: Representations of Technology as Cure. It's edited by Kathryn Allan. EasyBib tells me the citation for the book as a whole is this:
Allan, Kathryn. Disability in Science Fiction: Representations of Technology as Cure. New York: Palgrave Macmillan, 2013. Print.

Part 1, covering the introduction and chapters 1-2, is here.

Below are my (mostly angry live-blog style) notes on Chapter 3.

 Chapter 3: The Many Voices of Charlie Gordon: On the Representation of Intellectual Disability in Daniel Keye's Flowers for Algernon. Howard Sklar. 47-59.

I've read Flowers for Algernon. I had nightmares after. Insert nervousness about the chapter here.

“Ordinarily, the compressed time span of Charlie's involvement with the experiment would provide limited scope for an overview of his life; however, the dramatic changes caused by the experiment produce a radically condensed version of his life, from the metaphorical “child” that opens the narration to the self-aware “adult” that he gradually becomes.” (47.)

Ok, so this quote creeps me the heck out. Seriously. We're calling Charlie, the main character, a metaphorical child. The guy is not a child! He's a disabled adult. This is not the same thing as childhood, even if the cognitive tools he's using are the same ones a neurotypical kid would be using, which they probably aren't, the extra years of experience living and using those tools matters!

And! I'm pretty sure “that” being the pronoun-like word after child, opening the story, the version of Charlie we start with who absolutely is cognitively disabled, versus the “adult” that he later becomes? Yes, it's a linguistic nitpick and the author would probably say it's just sentence structure agreement stuff, but how come Charlie only gets an actual pronoun after he's been neurologically enhanced?

Also, what's with the idea that this makes it difficult to locate Charlie's true voice? If we're working with the assumption that a change this big is still the same person (which, meh, I'm kind of iffy on, but since I don't recall Charlie questioning it and this author seems to be working with it,) then all the voices Charlie wrote in are his. None of this wanting to find his true voice nonsense, his voice can change over the course of the story, and if he's changing we should expect his voice to change too!

“In literature and life, the actual voices of people with intellectual disabilities are typically heard-- if at all-- through other people's accounts. When their actual life stories are recorded or written, they are generally reported by others, with all the editing and redaction that entails. In fiction, the distance is even greater, with nondisabled novelists and story writers providing the words and tone for their intellectually disabled characters.” (50)

Yeah that's a big problem.
I think I'm OK with the author describing Charlie as having multiple voices over the course of the story rather than just one, but extremely not OK with the idea that one of the voices is his true voice, because then the others would be fake voices or not really his- with indication of that being his opinion, of him thinking only one of the versions is really him, kind of like with autistic people who think that if we were somehow made not autistic then we would be different people, then the idea of only the pre-experiment version being him, having his voice, is one I could buy, but are they really going to go with that idea?

OH FOR PETE'S SAKE. The author actually says it straight out “Charlie argues vehemently for the continuity between his earlier “self” and his present “self” when he describes this dilemma later to Professor Nemur” (54.) Why then are we trying to divide up selves and voices and find one that's the true one, they're all him. (Go check pg 63 or so, “But I'm not an inanimate object...” in Flowers for Algernon)

“Mostly then, what Charlie wants is for people to recognize his humanity-- both before and after the procedure. In these examples-- the progression from his earlier, developing awareness of the way he has been treated, to an attempt to weigh the significance of that treatment and how to deal with it, to arguing for his dignity as a person regardless of his intellectual capacity-- all these suggest that he is changed yet unchanged, that there is a unified core in his voice, however intelligent or lacking in intelligence the features in each of those voices may make him seem.” (54.)

I want to question a thing, now, based on the bit where as much as I have been arguing for listening to what Charlie says in evaluating who Charlie is, he is a character written by a nondisabled author and he therefore isn't the greatest example of an actual person with intellectual disabilities who fits a given assumption.
“There is indeed an assumption that intellectually disabled individuals are limited in their abilities to tell their own stories. Naturally, cognitive impairment may limit the ability to understand aspects of an individuals own experience, as it does for Charlie.” (55.)

I'm not actually going to deny that this can happen- it's happened to me before, where my own cognitive disabilities have meant it took me until years later to understand certain aspects of my experiences, and also where people's assumptions about my cognitive abilities have formed a barrier between myself and that understanding. But Charlie is not the example to use here. I know we're talking about Flowers for Algernon, but using a fictional disabled character, especially one written by an able person, as an example of a thing that can actually happen with disability to show that it can happen? Bad idea. No. Go with actual disabled people for that, not an abled authors impression of a disabled person.

“Charlie, speaking with the voice of academic intelligence and scientific authority, ultimately comes to know what his less capable voices have been saying all along: that the experiences are his alone to voice.” (55.)

AND WHY DO WE NEED ACADEMIC VOICE CHARLIE TO SAY IT? I mean, yes, great that this is how we end that chain of thought, ish, as opposed to wanting scientists saying stuff, but why do we need the now-academic Charlie to realize it before it's believed rather than listening to Charlie while he's still disabled??? That is seriously not OK.

Good that now we've got recognition of the bit where Keyes is a nondisabled author, and that this is “problematic” for the whole novel, even more so with how it ends.

That ending. It's not until Charlie is realizing that he's going to be intellectually disabled again and is scared of it (despite thinking that he was better off before in some ways) that he fragments at all. Hrm. Fear of who he used to be? That wasn't there before, it's not consistent with the Charlie we'd seen before, why'd it show up now?

Monday, December 22, 2014

Disability in Science Fiction notes: part 1

I'm reading Disability in Science Fiction: Representations of Technology as Cure. It's edited by Kathryn Allan. EasyBib tells me the citation for the book as a whole is this:
Allan, Kathryn. Disability in Science Fiction: Representations of Technology as Cure. New York: Palgrave Macmillan, 2013. Print.

Anyways, my notes from reading the introduction, chapter 1, and chapter 2 are below.

Introduction: Reading Disability in Science Fiction, Kathryn Allan, 1-15

Synder, Sharon L. and David T. Mitchell. Cultural Locations of Disability. Chicago: University of Chicago Press, 2006. Print.
Disability is a difference that exists only to be undone” (190, emphasis in original.)

Peace, William J. “Slippery Slopes: Media, Disability, and Adaptive Sports.” The Body Reader. Ed. Jean Moore and Mary Kosut. New York: New York University Press, 2010. 332-344. Print.
“People with disabilities have embraced the internet with gusto and have formed a vibrant cyber community. Disability studies scholars have also embraced the internet, but their communication and scholarship is restricted and exclusionary. This is a significant problem” (343.)

Quayson, Ato. Aesthetic Nervousness: Disability and the Crisis of Representation. New York: Columbia University Press, 2007. Print.
Quayson identifies nine main categories of disability representation: “
  1. Disability as null set and/or moral test
  2. Disability as interface with otherness (race, class, social identity)
  3. Disability as articulation of disjuncture between thematic and narrative vectors
  4. Disability as bearer of moral deficit/evil
  5. Disability as epiphany
  6. Disability as signifier of ritual insight
  7. Disability as inarticulable and enigmatic tragic insight
  8. Disability as hermeneutical impasse
  9. Disability as normality” (52.)

Chapter 1: Tools to Help You Think: Intersections between Disability Studies and the Writings of Samuel R. Delany. Joanne Woiak and Hioni Karamanos. 19-33

Basically I need to read Samuel R. Delany's stuff, because good sci fi and yeah.
Delany, Samuel R.
The Einstein Intersection. 1967. Hanover, NH: Wesleyan University Press, 1998. Print.
Empire Star. New York: Bantam, 1966. Print.

Pages 114-115 of The Einstein Intersection apparently has really good stuff in it.
“The stories give you a law to follow--”
“--that you can either break or obey.”

And in Empire Star: “The only important elements in any society are the artistic and the criminal, becayse they alone, by questioning the society's values, can force it to change” (103.)

Oh hey, I want to quote a chapter author directly rather than wanting the quote they wanted too from someone else.
Mainstream diversity courses routinely reproduce the exclusion of disability, treating it as an “add-on” to race, class, and gender. The Einstein Intersection, by contrast, illustrates how disability is used to justify other intersecting forms of inequality. For example, in the village, full participation as a sexual and gendered being depends on status as a “functional norm,” while in the city, wealth and class status are tied to making disability invisible. (32)

Chapter 2: Freaks and Extraordinary Bodies: Disability as Generic Marker in John Varley's “Tango Charlie and Foxtrot Romeo.” Ria Cheyne. 35-46

“In deciding to have the tattoo, Galloway foregrounds her cyborg status and resists normalization” (38.) This is in reference to a character who, in a sense, cured herself (funded the research used in her cure) but still choses to emphasize her status as having been disabled. In the same story, two former murderers are under “amparole,” with prosthetic arms made to be light, airy, and beautiful, as well as refusing to pick up a knife or gun.

Gosling, Ju. “Towards a Scientific Model of Disability.” Abnormal. N.p., 2009. Web., needs read, probably needs used in the engineering version along with medical and social models when introducting the models. Ooooh. See also links to other models here.

Saturday, December 20, 2014

Activism By Survey-Sharing

Autism Research Institute has a decent sized following, and they have research money with which to do things, and they occasionally do stuff related to adults. They even have a newsletter (not as frequently running or well-filled as the main one, but extant) about adult issues.  And they do webinars.

They shared a survey asking for input on future webinars! It includes an open box for topic and/or speaker suggestions, and that means people can say what kinds of topics they would like to see covered.

I'm not going to tell you that you have to take it (though I'd really like it if you did.) I'm not going to ask you to suggest interest in any particular topic. But I will ask this: think about the Autistic people you know of who might be able and willing to give a webinar on a topic you're interested in. If you do take this survey, consider suggesting them as presenters. If you are ever planning a conference or other event on your topics of interest, consider suggesting them or inviting them as presenters.

Now, here's the newsletter, right at the part with the survey, which is on the left side of the screen.

Full disclosure: I don't much like the Autism Research Institute. Much too parent and professional dominated, and too open to woo. But if we have the opportunity to give suggestions about their webinars? I'm gonna take it and make sure as many people as possible know, because getting some decent stuff up among the nonsense is still a step in the right direction while we work on rebuilding a new system that doesn't suck.

Friday, December 19, 2014

Some Gender(ed) Experiences

Last post I mentioned that yes, I use sie/sier/siers pronouns talking about myself in third person. Depending on how familiar people are with queer stuff, you might have wondered if I'm nonbinary. The answer is yes.

Some folks might ask if autism is making me confused about my gender... that answer is also yes, in a sense- I'm pretty sure "I'm Autistic" occupies about the same area that "I am whatever gender" occupies in most people's minds, and I'm not sure if that means I don't have a gender or if that means autism is my gender or what. It definitely means "not binary." Since autism isn't detachable, autism leaving me a bit confused about the specifics of my gender doesn't change the fact that I'm nonbinary!

(Also, it might be neuronormativity confusing me- if autism taking up the gender slot were a possibility more people talked about as a real and legit thing rather than it being part of "failure to conform to gender expectations" and therefore something needing to be fixed, I might have an answer as to what gender that means I have or don't have, and then I wouldn't be confused!)

But this post isn't meant to be about exactly what kind of nonbinary I am. It's about how this has affected my experience with gendered stuff.

I've been told that when I was very little, preschool age approximately, I quit my ballet class because it was a girls only class. I definitely didn't have the words to explain it at the time, and I don't have the memory to tell you now, but my guess is that my discomfort with women-only spaces due to not actually being a woman goes back that far.

You see, I'm nonbinary. I am not a woman, and I am not a man. I am Autistic. (See also: autism as gender.) And this was really confusing before I knew I was autistic, because how the heck am I supposed to explain why "You're not really a girl" isn't a dire insult if I don't know what I actually am?

In middle school, I was the only not-boy at my lunch table. Many of the tables were all boys or all girls, and I've generally been more comfortable as the only person in a group to be read as a woman than in a group where everyone is read as a woman. It took a while to figure out why this was,  but I do think I have a handle on it now.

When everyone in a group, including me, is being read as women, the assumption is that I am the same gender as everyone else in the group. This is false! This is really, really false! I am not a woman. When everyone in the group except for me is being read as a man, the assumption is that I am the only person of my gender in the group. This is usually true! There could be nonbinary folk being assumed men in the group, but since as far as I know, I've yet to meet anyone of my particular flavor of nonbinary in person, I think it's always been true to date.

Because when I am in a group that is all men except for me, including doing so in direct defiance of prerequisites (so the course catalog at my old high school still says tenor bass choir male members of chorus in good standing, and I am not a man,) everyone realizes that I'm not the same gender as the others in the space. Not so when everyone's presumed to be a woman.

This isn't actually the same thing as "not like other girls," by the way. Not like other girls implies that I am one too, and, well, I'm not. I get mistaken for one a lot, which is different from actually being one.

It's also not the same as not liking to be around women. Women are great! I'm just not one of them.

(Oh, and to Dan's parents: This is why I was totally fine with Dan saying I wasn't really a girl. It's because he was right.)

Thursday, December 18, 2014

Autistic Person Included is a Headline Because Reasons

Note: This is satire, or something like it. Also, yes, I use sie/sier/sier's as my pronouns when I'm writing about myself in third person. Everything else feels wrong saying it about myself, though other people saying it is usually not an issue. Now that this has been established, we continue!

The local woman's ultimate frisbee team looks and plays much like any other, but looks can be deceiving. You see, one member of the team is autistic, and we're therefore going to cite completely irrelevant and quite possibly deceptive information about the prevalence of autism in children, because of course this team member is actually a child despite sier status as a graduate student and teaching assistant.

Despite sier oh so inspiring struggles living while Autistic in an ableist society, sier teammates say sie is just a regular member of the team. "If sie weren't so open about it, we would never have guessed," one woman said, neglecting to mention just how little she actually knew about the developmental disability.

And yet, something must be different about this team, or the Autistic member, or the teammates treatment of sier. Otherwise, this wouldn't be news. We're pretty sure this is a feel good piece where the team is trying to demonstrate that they don't suck by acting like nothing whatsoever is different about their interactions with a disabled teammate. Because ignoring the reality of a teammate's disability is obviously the best way to make sier feel included.

Now that we are four paragraphs in, we're going to say that despite sier autism (which actually doesn't make it harder for sier to play ultimate,) Alyssa is a typical member of the team, and sier placement has nothing to do with autism. "Alyssa earned sier spot on the team fair and square," the captain noted, neglecting to mention that there aren't actually try-outs.

And now, in the final paragraph, we have some short comment from Alyssa sierself. "How is this news? This is my fourth year on this team, people." Clearly, Alyssa's impairments leave sier unable to understand that a feel-good piece on including a poor disabled person on a team is always news. 

Tuesday, December 16, 2014

A Research Survey Request

(Yeah, I'm totally willing to do this if I like your study. That's just kind of a high bar compared to where most studies on autism are, but specifically wanting Autistic respondents helps a lot there.)

Dear all!As a master student in Gothenburg University (Sweden) I am now conducting research on autism and blogging and Autistic people's communication experiences with posting. There is not much written about narrative practices of Autistic people, especially within Internet communication. That is why I find it important to convey a message to the scientific community about the necessity and advantages of computer-mediated interaction including blogs and social networks. I believe those who already benefit from it will stand for wider implementation of information and communication technology tools in an educational context as well.
That is why I kindly ask Autistic people who blog to take part in my survey, which can be confidential. However, if you want your blog to be referred to, it is also possible to put your name and the link in the reference list.
If you want to participate, have any questions, or want to see the support letter from the supervisor, please contact me Thank you in advance!

Things about this particular study that I liked:
  1. Kate started off guaranteeing anonymity. When I brought up the issue of that not crediting Autistic writers, she changed it to anonymity if we want it, citations if we'd rather have those. This is good both because it means taking Autistic input and because it means you can get credit for the work you've done.
  2. She responded well to my criticism of social skills programs that teach neurotypical standards and was interested in the idea of Autistic-nonautistic communication as a sort of cross-cultural communication rather than one side being "wrong."
  3. She did accept my throwing in blog links as answers or parts of answers for survey questions. Useful because new writing on demand can be tough.
  4. She's trying to describe Autistic communication online as it is, and was interested in the neurodiversity stuff she's seen.

Sunday, November 23, 2014

"Live" blog of my presentation to the Five Project

The Five Project is an autism organization of some sort (I actually didn't know much about them other than that they wanted a presentation on autism and neurodiversity, and now that they liked it and are apparently hoping I'd be willing to do something like it again.) I wrote a script that was kind of a mix of English and Chinese but mostly English, Vivien (an exchange student working with Steven Kapp) helped me translate, and then I recorded and edited a video that was mostly along the script, though rarely actually identical. We each updated the script to match about half of what I actually said. And then yesterday morning, I logged into the virtual presentation, which I live-"blogged" into Notepad++.

Now I'm sticking that here.


People are interested to hear me talk, and they're impressed with my ability to speak Chinese, and they're not NLMC-ing at the moment (there's time yet and considering the opinion folks tend to have of white people's ability to speak Chinese combined with my actually being able to speak I'm expecting it any minute. Wonder what it looks like in the more subtle/委婉 Chinese way.)

Not a lot of comments going on at the moment, which is OK with me. I can hear comments arrive, and I can hear myself talk (ugh I sound so not-fluent, even compared to my usual Chinese, reading aloud sucks), so I can do something not particularly thinking intensive to try and distract myself from my nerves until I'm needed.

want to add "很多人以为自闭症有悖于好好生活。" (A lot of people incorrectly believe that autism contradicts with a good life, ish.)

Just learned that 卡=lag, that's cool, but the reason for learning (apparently the meeting room and video are laggy for some people) is less cool.

It's a good thing we did transcript because of the lag. Captions wouldn't have solved the lag problem, though I do still want to get those done. I have less time pressure on captions than we did on the transcript, so that's good.

At the bit where I say "my carrying my computer around isn't because I want to be able to play computer games whenever I want" in the video, I typed "(I also like to play computer games)" and that got a laugh. Typed in Chinese, of course.

Oh yay, comments so far including folks saying "huh, never realized that" kinds of stuff about the sitting still and not stimming taking the energy we could use for learning.  And needing to learn to understand our body language rather than assuming we have none or assuming it'll be like neurotypical body language.

Still no sign of "not like my child," I am so confused. Happy, but confused.
Also convinced that not like my child is coming in the Q&A, because it's not like that's how things usually go or anything, and it's not like I have anxiety or anything, of course not!(SARCASM on the "it's not like" statements.)

Q&A has a lot of "when did you start typing" and "what'd you do in China" type stuff. Also some questions about kids, and about managing sensory sensitivities. How is there no NLMC I AM CONFUSED.


Note after: No one did the whole "not like my child" thing. I wish that didn't surprise me, because it should be typical.  But I am surprised, and getting "not like my child"-ed at is a common enough problem that We Are Like Your Child exists, and is a thing I contribute to sometimes.

I've actually been asked if I'd be willing to do something like this again. And I totally would. I'd let people share the video, as long as credit to me for actually saying all this stuff and Vivien for translation+transcripting help. It's on Youtube, not captioned yet so still unlisted, but I know Youtube is blocked in China. 

Thursday, October 16, 2014

Open Access (And Thunderclap)

Depending on how well you know me/how long you've followed my blog, you might or might not already know this, but I do research in a few different areas.

One is disability studies. For that, I tend to cite blogs really heavily, partially because I think Disabled voices need to matter and I know lots of Disabled bloggers (plus the publishing cycle on a blog is way faster than that on a journal.) But I do sometimes run into academic journal articles where it would be helpful for me to be able to read it, and then I can't. My university ID gets me access to lots of articles, but not everything.

Another is engineering stuff, sometimes assistive tech from a social model perspective when I'm combining the engineering and the disability, sometimes nanotechnology research, currently including a design project so I can graduate. This uses more stuff that's published in academic journals, so I run into the problem of paywalls and not being able to get articles a bit more often.

Then there's pure math. I'm playing around with Lyness equations right now, letting things be negative. Not much has been done with that, but there's one article that I know exists and that I know lets things be negative. I can't get at it. I'm frustrated. Open access would help.

And yeah, I do think researchers should be compensated for their research. That's not what the money being paid to journals is generally going to, though. Authors send their stuff in for free, so it's not content creators getting paid.

Academic publishing is currently a system where academics aren't always able to get their work to the people who could use it, and the people who would be building on it aren't always able to get at it. It's a problem. Open access stuff is at least a start. (A complete overhaul of the system would be good, really.)

Hence a thunderclap about it. I care about this. Maybe some of you lot do too?

Tuesday, October 14, 2014

#AAC Awareness Month

It's apparently AAC (Augmentative and Alternative Communication) awareness month all October.

I'm a big fan of AAC. I'm not a big fan of it being considered alternative, rather than just being one more equal way of communicating. I don't much like the idea that it should be an alternative, because that suggests that if you can use "typical" communication, then you should. My oral speech sounds pretty good, superficially, so people tend not to realize just how much I'm not able to do with it.

For example, there's a thing called "fluent in requesting." What this means is having good use of the grammatical structures involved in asking for things. I want, can I have/borrow, could you please, etc. Or in Chinese, 我想要,请给我,可以把————借给我吗?,你能做, and quite a few more. Yeah, I know the words to ask for stuff in two languages.

I usually can't initiate a conversation where I'm actually going to ask for something in either. What I can do is type the request.

Or if I'm having a problem. Maybe I'm overwhelmed. Maybe I feel sick. Even though I know all the words to explain what's going on, again in two languages, I probably can't tell you orally in either. But I can type to explain exactly what feels wrong, and possibly how to fix it. That's a big difference.

It's also something I would never have the ability to communicate if I didn't have access to typing. (For things at a distance and for writing school reports, I've had this for a while, because typing is expected/accepted in both those contexts. For face to face communication, I've been typing part time for about two years, maybe two and a half? I started using writing to cover some of that space before typing, but my handwriting is terrible and if I want my computer to say the words for me I should type it rather than hand write anyways.)

Because of how much typing to communicate has helped me, even though I'm not the picture of a "typical" AAC user most people probably have, I really do support more people knowing about AAC. I'm a big fan of folks knowing that some people type or use picture cards or apps to communicate, and a big fan of folks knowing that some ADULTS do this at least part time.

The adults bit is key too. Most of the AAC awareness stuff that I have seen is parents writing about their kids, professionals writing about the technology they use or the kids they work with, that sort of thing. Very little is actual AAC users writing about their own AAC use. (Ballastexistenz is one exception, and Typed Words, Loud Voices is going to be entirely people who type ourselves, but by and large, the promotion is done by adults talking about kids they are close to, not by actual AAC users.)

This means I am in two categories where people tend not to think of AAC: adults, because who ever thinks about disabled adults who are off doing adult things while also acting disabled; and people with some (in my case quite a bit of) oral speech. I don't think I'm actually rare among AAC users for either of these things, or even both at once, but I know that people like me aren't much of the conversation about AAC use. I know there is a lot of pressure for people with speech to use their speech as much as possible, though, even at the expense of actually communicating.

And finally: I'm a big fan of folks thinking about how much communication is typed when we aren't face to face, and wondering why meeting in person makes the typing somehow "different."

Image is of a jeans pocket, with orange background and orange text that reads "I use AAC." It's a profile picture from PrAACtical AAC.

Saturday, October 11, 2014


Warning for mentions of attempted ableist murder.

Isabelle Stapleton survived a murder attempt by her mother. You would think it'd be clear that she is the victim.


Isabelle is autistic.

This means people view her mother as the victim, as the person to have sympathy for, as the person whose shoes we should walk in, according to that old metaphorical statement. This means people expect us not to judge, because... apparently "Don't try to kill your kids" is an unreasonable bar to set? (Not everyone is Christian anyways, I'm not! But the statement is "Judge not, lest ye be judged," so it sounds like judging by a standard you're OK being judged by in turn is still fine. And I'm totally fine with being held to the standard of not killing my kids, or I will be once I have them. Right now I'd mostly be confused by the current impossibility of my failing this standard.

This means people may not even admit that Isabelle has a point of view. Yeah. Isabelle's a person, she's got a point of view, and in terms of the "Walk in someone's shoes" metaphor, Isabelle Stapleton has shoes. She probably has literal ones too, because most people don't hate wearing those as much as I do and I still have to deal with wearing them a lot of the time.

Anyways. Can we try having some sympathy, empathy, etc for Issy? You know, the person who survived her mother trying to kill her?

Seriously. I only have one thing to say about Kelli Stapleton, and I've already Tweeted it:

Tuesday, October 7, 2014

The Set List

I think rather echolalically at times. I use lyrics a lot for this.

So I've been throwing around in my head the idea of what set list I  would choose for, say, a concert "for autism." Which is totally code to get more people in in and then hit them with reality in the form of angry Autistic singers. (Mostly Autistic singers- there's a couple songs  I think should be a mix of Autistic and non-autistic singers or just a non-autistic singer, depending on choral arrangements (a cappella is awesome) or more typical band with lead singer sorts of arrangements.)

So, in order:

  1. Numb, by Linkin Park.
  2. Strangers Fate- first verse and chorus (possibly with first verse of One and Only for a medley), by High Tide, now known as The Saturday Nights. As far as I know, there are no publicly available recordings of Strangers Fate anymore, but here's a link for One and Only.
  3. The Jumper, by Third Eye Blind. I think this song should be either mixed or non-autistic singers.
  4. People of the Sun, by PONS (another name High Tide/ The Saturday Nights have gone by.)
  5. King of Anything, by Sara Barellis. Specifically, I want the version used in the Loud Hands Project video. And to have the video part (not audio) going in the background. Synchronization would get interesting.
  6. I'm not sure if I want to finish with Defying Gravity, straight up (Glinda would be a non-autistic singer, Elphaba would be an Autistic singer) or with a blending of Let it Go and Defying Gravity, similar to Let It Defy Gravity but not with the exact same set-up. I'd want to end on Defying Gravity, not Let It Go, and I'd do some of the transitions differently. (Also make Let It Go way louder and and more blatantly defiant than it's being sung.)
I'm not entirely sure about the order of Strangers Fate and Numb, because I'm not sure if "basically losing" (Stranger's Fate) or "knows what the goal is and can't see how to get it" (Numb) is the bigger "low point." But it's those two, then The Jumper, which is fairly straightforwardly someone saying "Just leave it all behind and get out, your life is more important than all that stuff." 

After that, we turn around. People of the Sun still doesn't feel like all that successful a rebellion or of fighting back, but we've got denial that the other people know better and the idea of starting a revolution. The King of Anything video makes a really good transition from the bad space prior to there actually being some revolution type stuff going on. There's momentum! And then Defying Gravity (and Let it Go) are pretty direct defiant middle fingers to expectations of what's right and possible. 

Long story short, BRB figuring out the lyrics and transitions I want for my personal Let It Go/Defying Gravity Medley to close with. 

Thursday, October 2, 2014

Nonfiction writing quality by gender? Yeah, no.

This is an answer I made on Quora. The question was incredibly sexist in my opinion, but someone other than the asker requested I answer and it caught my interest for rebutting. 

The question was:
Do you agree that nonfiction written by women is typically less interesting than nonfiction written by men?
The reasons given were that women tended to write with more attention to emotion and character, while men tended to write with more attention to taut arguments and scientific methods, which led to women's writing being superficial while men's writing was idea-rich. I am not sure if I can find a portion of the reasoning which actually holds up under examination. Anyways, next paragraph begins what I said.

The prioritization of quantitative stuff that's easy to measure over qualitative stuff where emotions make sense as richer is part of the problem here: each focus has its use, and devaluing the one that's associated with femininity is part of sexism, especially since women are taught that they need to be in touch with  emotions and then punished for being so.

Additionally, many serious nonfiction topics involve human factors. When human actions are involved, analysis of thought processes is necessary to properly address the topic. Despite the extent to which many of us wish to believe otherwise, humans are generally driven more by emotion and instinct than by rationality: we are rationalizers, not rational creatures. With this knowledge in mind, the idea that bringing emotional factors into the analysis makes it less idea-rich is shown patently false for many topics.

Next, there is an implicit assumption that these areas of focus are contradictory. Taut argumentation can still be used when discussing emotional responses, and scientific methods can be applied whenever causes and effects are observable. This is true even if the effects are qualitative rather than quantitative. 

Finally, confirmation bias is a known factor: once such an opinion is formed, a reader is more likely to notice examples that confirm this opinion and categorize exceptions as "the exception that proves the rule" or something similar.

Wednesday, October 1, 2014

A New Least-Eventful Disclosure

One of the many things I am is an engineering student. (No, I don't say that I have engineering studenthood, though in terms of how important the identity is to me, I'd buy that before I bought that I have autism rather than that I am autistic.)

As an engineering student in my final year, I have a capstone design project. This is pretty cool! One of the things that my professor asked for as we are getting started is a resume. Publications go on this.

Now, publications are awesome. I have a few, some with wallet!name and some with out-as-Autistic!name. (In person, I'm usually out as Autistic with wallet!name, but in public spaces online not so much.)

Most of the ones which are under the out-as-Autistic!name (Alyssa Hillary, in case you were wondering) out me as Autistic just by reading them, as disabled of some sort from the title of the essay or the description of the book alone. That's part of why they're under that name. 

Since I'm out to my school in general (though not always disclosed to any specific professor yet), I figure the question of how to handle those sorts of publications was a reasonable one to ask the professor. 

This means that my new least-eventful disclosure is the one where I get an answer of, "That's a good problem to have, but I'm not sure how to answer it." (It's a good problem to have because my publications (plural!) are the only reason I even needed to ask.)

But I'm still not sure what to do. My guess is that for any given company I send to, I'll figure it out from public and public-ish stuff about them, on a case-by-case, and for the copy my professor gets, I'll do everything that's even a little relevant to engineering, regardless of which name I put on it.

Friday, September 26, 2014

Disability Studies/Rights for Engineering Students

That's a thing I'm creating a syllabus for. It's going into a special issue of Disability Studies Quarterly! (Yay, I'm doing things!)

I know a bunch of things I think need to be in there (social model of disability, all technology is assistive technology, universal/inclusive design, disabled people involved in designing own things, how not to be terrible to disabled colleagues, etc.)


I am one person. A person in most of the right fields for this (education experience, engineering student, disability studies person,) but still one person. My perspectives are absolutely affected by which kind of engineering I do (I'm a mechanical engineering student with some interest in nanotechnology and some in assistive technology and a lot in computers) and the ways I am disabled!

So, I want to know what you think should get covered. That can be things you think a class introducing disability to engineering students should read, topics you think should be discussed, activities you think should/shouldn't be done, whatever opinions you have on creating a class like that are welcome.

I asked about this on Quora, too, if you'd rather answer there, and you can email me at if you want to talk that way.

Tuesday, September 23, 2014

Bisexuality Day

Around the internet I've seen a few different terms: Bisexuality Awareness Day, Bisexuality Visibility Day, Celebrate Bisexuality Day, and probably more that I didn't notice because I am not everywhere.

Whichever. Bisexuality and Today. Also Twitter. There's a hashtag, #MyBisexualityIs, that I'm fairly sure was created by @FeministaJones, and that's embedded below.
I tweeted a couple things to the hashtag too, which I'm embedding and writing more about. Twitter/Blogger combo is great for that, because I say something short on Twitter, then bring it over here to be more lengthly and get to say more things about the things and get kind of meta.

This was my first post to the tag of the day. It's about inclusiveness for those of us who are also asexual. I've written a bit before about the fact that I'm asexual, it's a thing. Sometimes, people think asexual=straight, and therefore not queer. That's... not necessarily the case. There's a lot of different kinds of attraction, sexual is only one of them. It's one that I don't experience, meaning I'm asexual, but any of the other kinds? Not inherently covered by asexuality. Gender identity? Not part of asexuality either.

And as for me. I am bi. There's enough different, overlapping, sometimes contradictory definitions of being bi or pan that I'm not 100% sure which fits me "better" but I can make a case for either or both. The fact that I am also asexual does not change this.
And here is my other tweet. No, no one has ever said that to me when I told them I was bi. It has, however, been said to other autistic people when they state their bisexuality. It's essentially a combination of the idea that bisexuals are "just confused" (false, FYI) and the idea that autistic people are somehow impaired in our understanding of our likes and dislikes (also false), so far as I can tell. We do tend to have some relationship difficulties because any kind of mismatch within any kind of relationship can cause those, but this is a different statement from inherent confusion about gender.

There's also the whole bit where even if we are confused about gender, if that confusion did somehow cause bisexuality, it would... still be bisexuality? (not going to lie, gender stuff does kind of confuse me: not in a "don't understand other people's genders" way or a "don't understand which genders I should be attracted to" way (all of them, clearly), but in a "um there is nothing in my head that looks like gender to me????" kind of way.) Bi because not entirely sure how gender works is still bi, even if it's not how my bisexuality is.

Not so much explained on Twitter because 1) 140 characters isn't much, and 2) My bi(romantic a)sexuality is not a sign of autism making me confused about gender, and the hashtag is MyBisexualityIs. 

Thursday, September 18, 2014

Acceptance Vs. Recovery

So this was actually a bit back, but I've been thinking on and off about my exact intended wording. I've also just been really busy. Taking five classes, teaching one, assisting three others, playing sports, and working on a paper for INSPIRe Student Symposium has that effect.


Think Inclusive wrote an article. This is a thing they do pretty often. This particular one started off by showcasing a poet, which is cool, and then mentioned that he had also been interviewed by a site called Autism Live, which includes language about "recovery." That struck an uncomfortable note with the author over at Think Inclusive, so they asked: "Can Autism Acceptance and Autism Recovery Coexist?" as I believe both title and Twitter text. Definitely Twitter text. 

I responded, as I am wont to do.
.@think_inclusive Re autism acceptance and autism recovery coexisting: LOL NOPE. Recovery=pass for NT, lose recognition of passing effort. 
I mean, the problems are more numerous than that. But the idea that if you act "less autistic" in public, no matter how much effort that takes, you therefore are "less autistic," potentially even "not autistic anymore," is kind of at the root of some icky stuff. Including the idea of recovery from autism, really. Because how else has recovery from autism ever been defined? Seriously, when has recovery from autism as a concept ever been defined in a way other than "this person is no longer acting in ways that person X finds to be obviously autistic," with no regard given to the amount of effort required to do so?

I'm gonna go with never.

Sure, there might have been times when people interpreted that "evidence" to mean that things more core were changed too, but even that isn't consistently happening. It's an idea of autism as some set of external stuff in how we act, rather than a more internal thing of how our minds work.

And I have plenty of criticism for the goals and concepts of passing for neurotypical, beyond what I'm putting here. But.

Autism acceptance involves teaching autistic people as we are, accepting that our minds work... however they happen to work (that's not even necessarily consistent over time and between energy levels within a single autistic person, many of us have multiple modes of thought, but there are some patterns in how autistic people's minds tend to work.) It involves saying, "This person is always going to be autistic, and we're going to work on skills that are compatible with their autistic self, in ways that are compatible with their autistic self, with goals matching their goals." It views growth into an Autistic adult as the goal.

Autism recovery views growth into a non-Autistic adult as the goal.

I think that's a pretty core difference: autism acceptance says that an autistic child will grow into an autistic adult, and that that's great. Autism recovery says that an autistic child should grow into a non-autistic adult, and that an autistic person being able to "pass" for non-autistic, even if only by the cluelessness of those around them, is the same as being not autistic anymore. These are pretty incompatible ideas.

Tuesday, September 16, 2014

Some Joking Nerdery

I'm taking a graduate linear algebra class this semester. (I'm also taking difference equations, which looks a lot like more advanced linear algebra, at least while it's linear.) During the "lets go through all the stuff you probably learned in undergrad, then forgot, but kinda want to know for this class" phase, one of the things we've covered is linear transformations. T is the variable typically assigned. Linear transformations have kernels/null spaces, which is the stuff from the first set that gets sent to the "zero" point of the second set. These get denoted by a cursive N.

So the null set of a transformation T is  NT. Now, the joke of NTs being null as in nothing is not even a little bit where I am going. Neurotypicality as a construct is pretty thoroughly terrible, yes, but calling a group of people, even privileged people "null space" as in nothing as the punch line is not my idea of joking nerdery.

Defining a function from people to something, like from people to some sort of directed distance from "exact average brain" or "the brain society is defined for" and pointing out that plenty of people are close enough to it to not have a problem, so are going to be close, but the null space isn't based on being close to the zero point. It's based on the function taking you to exactly the zero point. So  NT being the empty set with no one in it because no one has exactly that idealized brain amuses me. (Even if it's not exactly one of the ways I think about neurotypicality/averages/social ideals, it's close enough to amuse me.)

The other idea I had was a space of neurotypes, where the zero point represents the idea of neurotypical as default (so basically this is a space that I don't really like, but I recognize it's how society tends to work.) Defining a function for that is honestly even weirder to me than defining it from people to the directed distance thing, though I could maybe make another function from that multi-dimensional directed distance thing to the neurotype labels the brains map to? In that case, NT would actually be "close enough to that ideal to be privileged by it." That's fairly close to the other way I think about neurotypicality/averages/social ideals.

Neither of those things can actually work as linear transformations, at least partially because I don't think any of the people spaces work as vector spaces, and I'm not entirely sure that any of the spaces I'm mapping into work as vector spaces either, plus there isn't people addition to work like vector addition should. Also  NT being the kernel of something instead of null space, cause that's two words for the same thing. Probably some funky associations there too.

Monday, September 15, 2014

"But AAC Increases Speech!"

So this is one of the big arguments I see in favor of giving people who don't talk, or who only talk a little, access to augmentative and alternative communication (or, as sometimes I think of it, maybe-actually-working communication. Because most of the time, if parents and teachers are considering AAC, that means that the communication that the person has is not working. Maybe it's a matter of not knowing all the words, maybe it's a matter of other people ignoring the behavior side, there's always multiple sides in a communication breakdown but that doesn't change the not-workingness.)

And people worry that if they let their kids use AAC, their kids won't talk.
Study after study shows the opposite, by the way, that if you do speech therapy type stuff and AAC stuff at the same time there's both a better chance of speech and more speech than if there was only speech therapy stuff. Even just "we're doing speech therapy, here's an iPad AAC app too" increases speech more than just the speech therapy.


Here's my question.

Let's say that a person did decide, after getting their AAC device, that they were done trying for speech. Let's say that a person did decide that typing or picture cards or whatever else just worked better and they were done trying to make mouth sounds.


No, really.


Where is the problem with this?

If a person is happy with how their AAC device is letting them communicate, which means it's working for them, why the insistence that they must also speak orally? Why the insistence that one method of communication is standard and ideal, while the other is, well, "alternative and augmentative." Why is AAC even needing to deal with the accusation that it could reduce a person's motivation to speak?

Cause I'm not going to lie. My motivation to speak is lower when I can just type. If I feel like I'm on the edge of speech going kaput, or speech is getting tougher, or whatever else? Once speech is an effort much of at all, if typing is an option I really do just go, "Screw it, I'm typing." And I fail to see the problem with that! It's me choosing the method of communication that works best for me, and that should be a good thing, not used as the reason to keep AAC out of people's reach.

Friday, September 12, 2014

On Technology's Role

I  read "On Institutionalized and Autonomous Access Forms: Toward a Refusal of Pity Infrastructure." As is typical of that blog, I'm not sure how much I understood the actual points the author was trying to make, but it made me think anyways.

I think I get what's being said here, though:
We can start to build communities that do not create singular models of access, but turn access needs into a constant conversation between people. Access needs can become an everchanging process based on persona deliberation.
And at least some of this:
Access and asking about access needs is built into the social patterns of disabled people amongst disabled people. This proves that access need not exist as a reassertion of private technology manufacturers and government bureaucracy.
Here's the thing:  I'm an engineer. I like finding technological solutions to problems. I like when technology can make a job or a process or a life or anything else easier.

What I don't like is when a lack of technology is used as an excuse to discriminate against people, or when a lack of technology is used as the excuse for failing at access. I especially don't like when technology is kept out of the reach of the people who need it most because of profit motivations or discrimination in general.

Before elevators, someone could have made the excuse "we don't have a way to get you up to the second floor" to a disabled person, and it might have even been true. That wouldn't have made it OK. Finding a way to make whatever the person needed be somewhere they could get at it, finding another way to get them to the second floor (there's ramps to the second and third floors in the gym complex, wide enough, smooth enough, non-steep enough that yes, you could take a wheel chair up that.)

When people don't understand the communication of disabled people, or when people don't understand that our actions have a purpose (even if it's a purpose that wouldn't make sense to others,) there can be problems. It depends on the attitude: If they say "I don't understand what you want, but I can understand your no and try stuff till I get it right if you want," that seems reasonable. If they instead decide that because they don't understand, there isn't any communication happening, that's not OK. Finding a technological solution to "we're having trouble understanding each other's communication" is a reasonable thing to try. (Google Translate, much?) Using technology to try to prove that communication isn't happening or using the current lack of a technological solution as an excuse to ignore communication is not OK.

So: The way you look at a problem matters. If you're looking at a problem in a way that is equitable and not oppressive (hard to do!) there may still be questions and problems where a technological solution makes it easier. The lack of technological solution isn't an excuse to do things wrong, but trying to find said technological solution and make it readily available is still cool.

If you're looking at a situation from an oppressive angle, the technology-based solutions you come up with are probably still based in that oppression and that's not OK.

Also:  There not being technology answers to any given access issue (yet?) doesn't keep disabled communities from figuring out ways to do access. Technology that makes it easier for people to do what they've already been doing, that makes it easier for communities that care about access to make it happen as a community? I think that's still worth trying to create, yes. 

I say "if you" here, but this is something I need to remember just as much, if not more, than most of my readers: I'm the engineer. I'm the one who'll be looking at problems and finding technological solutions for them, so I'm the one who's going to have to remember to pay very close attention to my perspective on the problems, to make sure that I'm not basing solutions in the idea of a person being broken or wrong or lesser, or of a culture being broken or wrong or lesser. I'm the one who's going to have to pay attention to, well, who I'm paying attention to for things like problem statements and possible solutions.

Wednesday, September 10, 2014

"how can an autistic guy prevent rape"

Welcome to another post in "someone found my blog by searching this, so I'm going to respond." Warning for discussion of rape, assault, and sexual abuse.

This is actually a really good question to ask. Reasons:

  1. Overall, men do most of the raping. It's about 90% done by men. That means men are in a really good position to stop it by calling out their fellow men.
  2. Autistic people are way more likely than people in the general population to be sexually abused or assaulted at some point. It's not only autistic women being attacked, not by a long shot, but still a majority.
  3. Autistic people tend to spend a lot of time in the company of other autistic people, sometimes by choice and sometimes by segregation done by others. This means putting autistic men and autistic women and autistic nonbinary folks all in one place.
Now. I know that an autistic man isn't going to be able to do much to protect a fellow resident in an institution if the harasser/attacker/abuser is staff. I wish he could! But it probably won't actually stop the problem. Checking in with the fellow resident, letting them know that what's happening is wrong, offering to report it if there is anyone to report it to, those kinds of things have the potential to be helpful (and aren't limited by gender or neurotype!) Saying something in the moment might buy a delay, but that's a maybe, and it comes with a risk of being the next target. The power differential in an institution is a big problem, and it's not OK, but I'm not really comfortable telling residents to risk their own safety to correct injustices there. (I also won't argue if someone decides to.)

If it's between residents, however, there's probably less of a power differential going on, which means saying something in the moment or not leaving the attacker alone with their intended victim is more doable and more likely to be effective. The stuff for when it was a staff member victimizing a resident is still good to do. The thing to worry about here is more general rape culture stuff: most places don't like to admit that sexual assault happens on their watch, or if it does, to pretend it's the victims fault. This makes reporting against the will of the victim a really bad idea, because they're sadly probably right about the consequences that would come to them for being victimized.

And of course, if you're an autistic guy living or working in an institution, don't rape people there. This is a substatement of don't rape. This actually applies outside of institutions, too. Which I'm going on to, next.

Outside an institution, in mixed neurotype places, you're on the same kind of "how to prevent rape" as most guys. If someone you're flirting with tells you they aren't interested, listen. (Admitting that you have trouble with subtle and that you need more direct is potentially a thing because autism, but people being afraid to do the blunt thing because of a very reasonable fear of violence from men in general means you might not get the bluntness needed. Actual problem, leaving people well enough alone as soon as there is a signal of "no" that you understand is really all I've got here.) If you can see that someone isn't interested and the other guy isn't backing off, intervene. Tell him what you see, tell him to back off, tell him not to push another drink on the person! It's scary, yes, but think how much scarier it is to be the person who needs this guy to back off and can't get him to!

All this stuff I'm saying you should tell other guys not to do apply to you too: if the person you were hoping to date or to have sex with says no, or maybe, or not now, or anything of that sort, stop. Don't keep asking. Don't give them more wine. Definitely don't tell autistic people you could theoretically reproduce with that they need to have sex with you for the survival of the neurotype. That is extremely not OK. 

And another reminder: If you see someone else doing those things, tell them to stop! Yes, it's scary. Being the person this stuff is being said to is scarier. And, you know, you're the one who asked how to prevent rape. This is an answer: stop the lead ins, stop the "little" ways that boundaries are violated which lead to the big ones.

Monday, September 8, 2014

The Stuff and The Things

Also known as "What's Alyssa been up to?"

I started teaching precalculus. There were technical difficulties in the classroom (my computer didn't hook up to the classroom media properly even though it worked fine in the other classroom that's theoretically the same.) I haven't needed my text-to-speech yet, but I am going to need to figure out a different way to handle it than the classroom audio because the connection is not working.

They'd probably move my classroom if I asked (the chair of my department offered that he could get it moved in case of just this problem), but my class is mostly freshmen and they're having enough trouble getting used to college as it is, so I'd rather either fix whatever is wrong in my current classroom or see if the speakers I have for my iPad's AAC are loud enough for the classroom.

I have made an attempt at joining Best Buddies, not because I think the way they work is good (erm, no, not even a little bit) but because I want to make a point to the people there that developmentally disabled people can be mentors too. (I'm also looking forward to meeting my buddy, because yeah, I do like getting to hang out with other disabled people/people with disabilities.) I've heard from a friend with what I'm guessing was a similar idea that the online registration form directs you into the person being helped category if you say you have a developmental disability, so I have plans of attack in my head for either getting it changed or making a really loud fuss about it (hopefully the first, probably the second) should that still be the case. The university chapter said "of course you can!" when I asked about being a mentor while myself disabled, so I might be able to get them on my side for at least the changed part, but probably not the big fuss part, even though the big fuss is probably how the changed would happen if it's going to.

I went to the meeting of my school's graduate assistants union. This is a year for contract renegotiation, and I noticed that the only reference to disability at all is in the nondiscrimination clause. There's nothing about accommodations or access or anything of that sort, or about designing things to be usable by as wide a range of graduate assistants as possible in the first place. Which, I mean, I can kind of understand why it's not in there:
  1. It's not the sort of thing most people automatically think of unless they are themselves D/disabled or have a disability.
  2. The accommodations/access side is theoretically covered by laws like the Americans With Disabilities Act anyways.

I think it should be in there anyways, and there's a few reasons for that.
  1. Enforcing the ADA is really hard for most people, because it involves filing a lawsuit with the department of justice. Yes, even the threat of a lawsuit can be effective at times, but it generally needs to be at least a semi-credible threat.
  2. If it's in the contract, then violations can also be handled by having the union go to bat, such as by filing a grievance. That's got more force than showing up in an office and complaining alone, but is generally easier to accomplish than filing a lawsuit. This is important because many professors do refuse to ensure access for students, and many departments do actively exclude disabled faculty members.
  3. Attitudes: If following relevant disability laws is explicitly stated in the contract, even if it is a bit redundant (and as an engineer, I like certain kinds of redundancy, including this particular kind,) tells people that there's a group on campus that cares about the disability side of things, beyond just disability services (who don't negotiate the graduate assistant contracts.) There being such a group is a whole lot more welcoming for folks where disability stuff could be relevant than there not being any groups like that is!
I'm actually supposed to talk to the... I think it's the executive board or the negotiating committee or something like that, this Monday, right after lunch. When I brought it up, they said that it was important and they'd like to get it into the contract. One of the people on the board worked in disability services at another university for a while before coming to grad school, and she pointed out that she'd seen so many professors actively refusing to do access, and disabled students have all those same stories from the end of being the one who gets excluded, that this was a big problem. So it looks like I've got union support in saying this needs to be on the contract.

Friday, September 5, 2014

"stay away from autistic person"

This is another search term that has brought at least one person to my blog.

In general, no, you don't need to stay away from autistic people. Actually, it'd be kind of bad to make that a general thing that you do always. Being included in stuff (which is not the same as having our presence grudgingly tolerated or having people refuse to do basic stuff that makes it easier for us to be somewhere) is actually really nice! I like getting to do things with people, sometimes.

But there are times when "stay away" is the thing to do.

  1. Meltdown.
    Autistic people wanting everyone and everything to go away when they are melted down or shut down is pretty common, especially if overload was a contributing factor. It's not every autistic person, but "stay away" in the form of "give space" is a decent starting point for an autistic person who is melted down or shut down.
  2. Request!
    Sometimes an Autistic person will ask you to back off a bit, because you are in their space. This is similar to when, oh, anyone you didn't know was autistic asks you to back off a bit because you are in their space: you should do so. If someone says "too close" or something similar, or they start backing away, respect that. Seriously.

    This also goes for if someone asks you to go away because they are overloaded and can't deal with people right now. Respect that.
  3. If you have trouble seeing us as human.
    If you have trouble seeing autistic and human as being traits that a person can have simultaneously, you should fix that before you knowingly or intentionally spend time with autistic people. I mean before. I do not mean "try to learn it by spending time with the poor dears" or some such, because frankly, the way that you'll probably be taught to see and work with us in those kinds of things makes that problem worse, not better.

    So if you have trouble with the idea that autistic and human are not mutually exclusive and that we are already real people while being autistic (including if "person with autism" is the only way you can remember that we are people, which is different from having been taught to use it by people who prefer it because it also theoretically provides that reminder) then you should probably stay away from autistic people. That's not for your sake, by the way. If it's for this reason, it's to protect us from you

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.


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.


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.'"

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?
I mean, without being not-asexual.