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, April 30, 2014

Yes, That Too: Expressing PosAutivity MY way #AutismFlashblog2014

In class, a visiting professor asks if we are willing to introduce ourselves. I flap (of course I flap, this is me, flapping is what I do.) It's a happy flap. The professor, not knowing me, not knowing how my body language works and therefore interpreting my movements through the dominant ways, assumes I am upset, that I do not want to introduce myself, that there is some sort of problem.

That could have been a problem, but my classmates, my regular teachers, and I all know how to explain: I express posAutivity in my own Autistic way. We explained. It was actually relevant to the topic I'd wanted to bring up, how neurodiversity and cross-cultural communication totally relate, that we should be looking at cross-neurology communication in some of the same ways we look at cross-cultural communication because that's often what it is.

I'm waiting with classmates in a lobby, and the phone starts to ring. My hands go to my ears, and the blanket corner I was playing with goes to rest on my head. A friend notices, and suggests that we all wait outside instead. No, my communication is nothing like the neurotypical dominated standards, but they're clearly ones people can learn to understand if only they take the time to learn, to look at how I work instead of their ideas of how "people" work based in their own cultures.

When I allow myself to perseverate, when I dive right into my Autistic Obsessions, when I flap and rock and spend time with people who view my body language through the lens of how I work rather than their ideas of how people in general work, when I start typing just because it's easier instead of making myself keep making mouth-sounds until the mouth-sounds won't come any more, these are all expressing myself my way.

I am Autistic, and I am proud. I will express my pride in my Autistic ways. [Would it really be taking pride in my Autistic self if I were only willing to express it in neurotypical-passing ways, even when those ways were in opposition to my natural Autistic ways? I think not.]

Tuesday, April 29, 2014

Might be a while till I publish Neurodiversity+cross-cultural communication thing

My teachers apparently didn't realize that this is actually original work in a neurodiversity stuff, and that that's a field with not a lot of people. Once they realized that not only was I writing about stuff that's not their field, but I'm actually published in it and was writing new original ideas, they were like "You should try to get that published!"

I pointed out that it was in Chinese, and no USA-based journals for disability studies stuff that I know of publish articles in Chinese. Also, the articles I've written so far aren't that long- they're like 1200-1600 characters each. If I combined them, I might be into the length range that's reasonable for publication, but they're still in Chinese.

So now they might be looking into how one goes about publishing academic work in China? Which means that I'll be waiting to put it up on my blog until I know what's up with that, since academic journals usually don't want to reprint blog posts. If it goes up, I will put a copy on, which people can get at for free, and I'll see if I'm allowed to put the text here too. But since it's written in Chinese, I figure I have a better shot at getting people who read the language to see it if the initial place of publication is, you know, not blocked in China. Not everyone has the software, computer know-how, or money to get around the great firewall, and not everyone is willing to cite blogs, so when it comes to bringing new things into academia, publishing in academic channels can be useful.

Yes I'm a bit of a pragmatist sometimes. Also, I probably should translate the thing into English at some point. Chinese academic articles require an English abstract anyways (imperialism much?) and a decent number of articles are actually in English (again, imperialism much?) There's also a decent bit of Chinese academia citing English-language stuff, but I don't see much USA stuff citing things that aren't written in English. USA, why not? Why do we not cite stuff from other languages much? Is it just that a lot of us can't actually read other languages? /meh.

Monday, April 28, 2014

Disorganized ramblings on asking for and then not receiving help

After climbing the Great Wall of China with my teachers and classmates from my study abroad program, I realized something. When I have a really obvious coping mechanism or solution where you can tell I'm doing something unusual, they're really fast to come offer help. But when I ask for help with something everyone else seems to be able to just do, they're not really sure what I need and I'm probably not going to get what I need. This is really frustrating, because guess what? When I've got the obvious coping mechanism going on, that means that I've got a solution! I probably don't need help! I've got this!

When I'm asking for help (which is one of the things I'm really bad at,) there's something I need help with. It means there's a problem where I don't have a good solution. If it's something that most people my age are expected to be able to just do, that's thought of as simple? Chances are, I don't even have a bad solution that drains my energy like woah, because even those are less draining than spending a long time explaining that I can't do the thing, why I can't do the thing, what help I need, and probably still having to use my bad solution anyways because “I should know how to do this.” Yeah um... I'm well aware that most people can do the thing. I am well aware that pretty much the entire rest of the world thinks FAFSA is annoying but simple while Real Analysis is complicated and hard. I am well aware that my thinking Real Analysis is simple but FAFSA is made of pain and misfortune is weird. This is not even vaguely news. Telling me this is not even vaguely helpful.

Not helping me (or thinking that giving me the first step will magically solve the problem even after I've told you it won't) isn't actually helping me, because I'm not going to magically gain these skills just because you think I should have them. Not tolerating the lack of certain skills doesn't make them appear. It just means not tolerating the people who happen to lack those skills. Which, um, not cool much? Also going to exclude people who have the skills needed to do the job but not to get the job in the first place, which is counterproductive for you too!

So reality moment: Writing a cover letter to ask for a job is hard for everyone, being worried about the fact that I need to be walked through it step by step every time is OK (it worries me too sometimes!) but deciding to worry while not giving me said walk-through is worse than useless. Telling me that FAFSA and scholarship applications and other burecratic paperwork are simple but boring isn't helpful, though if that's what they are for you, helping me get them done totally is! Because guess what? For me, those aren't simple. I'd rather sit my Complex Analysis final again. Maybe the whole 3-finals-in-a-row day, at least I understood what was being asked and how to answer those problems.

Yeah, I'm conventionally “smart” in a lot of ways. I do ridiculously well on standardized tests. Like, 8th grade me got higher on the SATs than most of the high schoolers taking it to try to get into college. In 10th grade I sat the physics subject SAT on about a weeks notice and one hour with a study guide, and I got an 800. I passed an AP test for a class I never even took. (US History, in case you were wondering.)

I'm still cognitively disabled. Folks tend not to get how that works until they watch me crying over an attempt at organization, or FAFSA, or other bureaucratic paperwork, or maybe it's a personality multiple choice test that doesn't have an other option and no I can't just choose one they are all wrong so I just have to exit out of the whole thing. Yes, I mean those buzzfeed sorts of quizzes people my age seem to like to take, though surveys sent by my school and FAFSA applications have both done this to me too. Probably about half of my attempts at those end with me melted down and the quiz not actually done. Maybe it's a particularly open-ended assignment at school where the teacher is refusing to limit my options because it's supposed to be open-ended and I'm trying to explain that if they don't limit my options I can't do the assignment at all and for goodness sake limiting my options on an open-ended assignment should be a reasonable accommodation. Tell me what I am supposed to do and there is at least a chance that I can do it. Tell me the point is to give me options and I will look at the assignment and have no clue what it is that's even being asked for and therefore come up with nothing. Heck, give me a list with a note at the bottom saying that the list isn't exhaustive. I mean, I'll almost certainly do my project on: 1) Something from the list, 2) Why the premise of list item X is terrible, or 3) Why items X and Y from the list have relation Z, but I at least have a project chosen from within the acceptable space of projects.

Back to the point: Obvious coping mechanism doesn't automatically mean help is needed, though offering is nice and I swear I won't be mad at you for offering me help. [If I say I'm fine and then you insist on what you think is helpful anyways, especially if it involves touching me or my things without permission, I will be mad.] Asking for help means there is a big freaking problem and if you don't help on the basis of “you should be able to do this” then I probably think you are terrible. If you're not sure what it is that I need, you can and should ask, because I know that my needs seem a little incongruous with other abilities. I'm totally willing to explain what help I need, as long as you're not going to then tell me you won't do it because then I won't learn or some such nonsense. That is a thing that people have done, as is worrying about me/talking about this worry behind my back because I asked for help but not actually providing the help (why would you ever do that?)

And yes, I've gotten pretty good at explaining what it is I need from those occasions where people are actually willing to provide said help. It's still more energy than most other people are spending, because the explanations take energy and the way I do the things with supports are often still more draining for me than they are for the folks who think it's “simple.” That's a kind of tired that I've learned to calculate for, because it's reality. It's just when I manage the request and the explanation only to not get the help because of some idea of what I should be able to do that I'm stuck, because I can't exactly calculate for “have to do things I am not capable of doing.”

Saturday, April 26, 2014

Diagnosis day

Today is my diagnosis day. (Late in the day for me because time zones.) That means reflection, and also that means cake. I met up with my classmates and a a couple teachers at a bakery and got a cake, and one of my classmates said she was really tempted to sing "Happy Birthday" to me. Which is funny, but also kind of fitting.

See, diagnosis as autistic? It's a big change. It's a big step towards understanding myself, how my mind is put together, how to arrange things so that they make sense to me. It's important. It's not actually a second birthday, but there are some similarities.

And yeah, I know that's totally opposite to how a lot of parents view their children's diagnoses. I'm going to blame the rhetoric around autism for that one, since the idea that autistic people were stolen or that our futures were stolen by the way our brains are put together is unfortunately widespread. But I'm me. I live in the mind that got diagnosed, I know I'm in here because that's my own experience. We're all in our own heads, and better understanding how our minds work is really useful. Getting potentially useful information about how my brain works isn't the starting point of a tragedy unless someone takes that information and uses it to enforce tragedy upon me.

Which I've been lucky: No one's used the information about how my brain works to enforce tragedy on me. This does happen to autistic people (and other disabled people, let's be real,) but remember: autism isn't actually to blame for that. The people enforcing tragedy are.

And I guess those are my thoughts for my diagnosis day. It's not a tragedy to be born autistic, and once you've been born autistic? Finding that out is useful.

Friday, April 25, 2014

Travel, tiring but good this time

I had another travel thing with my class last weekend. It was to Beijing, for Thursday-Saturday, and it was tiring and also a break in my routine. BUT! It was a lot better than the one in November.
You can at least partially tell that it was better because I dropped off the face of blogging for less than a week straight over it, as opposed to missing a decent bit of a month and having NaNoWriMo fall apart. (NaPoWriMo, sadly, did get lost to the tired, but there's always next year.)

I know part of it was that this was a shorter routine break and I had fewer sensory overload issues on this trip. But there are also things that were different in how my teachers and I handled the transitions. Those are probably useful to talk about, considering that I figure most folks reading here have some sort of connection to autism. (Wasn't this supposed to be a personal blog? Oh yeah, it is, and then I went and perseverated on autism so like 2/3 of my posts or more are autism-related.)

Anyways, here's some stuff I did differently:

  1. In November, once I got back I didn't realize just how off-balance I was so I tried to keep working like everything was normal. This time I knew that I was going to be off-balance and didn't really even try to speak out loud in class beyond really basic stuff for the first couple days. I typed instead, and I sent what I typed to my teachers in an email after, which they accept as an alternative to my speaking in class when speaking is an issue. 
  2. In November, I didn't take a rest day until I'd actually melted down... multiple times. This time, I took the day that was meant to be used for social survey stuff and made it a rest day instead. 
  3. This time around, I just went straight to sitting on the floor in a corner in class as soon as the chair started being not-good. 
Now here's some stuff my teachers did differently, both on the trip and after:

  1. In November, they also changed up teaching methods and tutors between leaving for travel and coming back. That meant I wasn't even coming back to the same routine I left. They made no such change this time.
  2. They planned a bit more down-time into the trip, in the form of "free" time that I spend recovering from people and routine breakage and people. Yes, I know I said people twice. In November, we were spending basically all waking hours with people and that was kind of terrible. 

Monday, April 21, 2014

But that's the Old Testament? Wait, JEWS STILL USE THAT.

Warnings for mentions of death, murder, sexual assault, homophobia, biphobia, transphobia, religious bigotry (Talking about a Jewish way around the lines in the Old Testament that get used to justify homophobia.)

I've seen a decent number of progressive people point out that the prohibition on gay stuff in the bible is actually Old Testament and say that's why it doesn't matter. Here's the thing: Old Testament=Torah=that book that the Jews still use. So if that's the only argument you've got, you're kind of implying that Judaism is inherently homophobic. That's not awesome. [Pointing that out as being the way that Christians handle it while saying that Jewish folk would have a different reason, as opposed to just leaving it as "that's Old Testament" is probably OK. Because Christians actually don't follow all the same rules that Jews do, as evidenced by ham being a pretty traditional Christmas dinner and also being something Jews aren't supposed to eat. The problem is when you then imply that Jews would therefore be bigoted, as opposed to having our own reasoning fitting within our own beliefs.]

So, here's my personal take. For background, I was raised as a Conservative Jew, went to Hebrew school, and was Bat Mitzvahed. I can read Hebrew aloud, but generally have no clue what I'm reading. At the age when I was still going to Hebrew school, I didn't even know the Torah had stuff in it against homosexuality, because none of my teachers ever brought up an interpretation like that in order to be against gay people or bi people. It's not as if I was being somehow steeped in homophobia due to being raised in a religion that still uses the Old Testament/Torah.

One of the really big things I was taught was "to save a life." Basically, while there are a lot of rules (513 or 613 I don't remember, and most of them are inapplicable nowadays because the Temple in Jerusalem was destroyed and we therefore don't have animal sacrifices anymore, using blessings/prayers instead) you can break pretty much any of them to save a life. You still can't murder (which is a rather specific sort of killing) and you still can't sexually assault people, but short of that, I was taught that saving lives beats the other rules.

Now, in the modern world, it's pretty well established that homophobia does get people killed, biphobia does get people killed, transphobia does get people killed, especially Black trans women. Fighting against stuff that gets people killed seems like a pretty good place to apply "to save a life" because it's literally trying to save lives.

So I'm sure that there's a bunch of other ways to handle those passages without having to be anti-queer, but since I'm not actually religious and I don't know my Torah that well, hitting it with the "to save a life" rule I was taught in Hebrew school is the solution I'm going to come up with. And, you know, that rule is one I think more people should be thinking about, and it's one of the rules I actually use. [Yes, "don't sacrifice people to ideologies" comes from the same place as "to save a life."]

Sunday, April 20, 2014




Monday, April 14, 2014

Trying to Talk About Cross Cultural Communication and Neurodiversity

Part the first:
So on Wednesday a professor is going to talk to my class about cross-cultural communication.
I might be writing a thing about how this is TOTALLY APPLICABLE to Disability and Autistic cultures to send to my teacher and try and convince her to let me chuck it (figuratively) at said professor. Because yes. This is a thing that is happening, and cross-cultural communication applies to neurodiversity stuff and this is maybe also relevant to the paper I need to finish about essentially Neurodiversity 101 for Society for Disability Studies.
And yes, will put the thing I write on my blog once it's properly edited. But it's in Chinese so...

Part the second:
Right now the piece is 900 characters or thereabouts, and then there's my citations. Yes, I'm citing stuff. Including the only simplified Chinese academic article Google scholar turns up on neurodiversity. It's more how it applies to educational stuff, and it's really only 3ish paragraphs that actually have anything to do with neurodiversity, but still. This means someone else translated the word neurodiversity for me and I'm not the first person to think this is a thing worth talking about in Chinese. Which is kind of important considering that this other person is actually Chinese and I'm not.
I'm also citing the thesis that made "this is relevant" click for me, because I'd read it shortly before I found out about Wednesday's talk and directly talked about cross-cultural communication as being a useful idea for interaction between autistic people and allistic people.

Part the third:
I got some help from one of my teachers on editing this thing. She said that for language specific to neurodiversity stuff she won't know so much because it's not her field, but then... pretty much every neurodiversity paradigm word except "neurodiversity" itself I'm needing to invent the translations for anyways.

Her comments were mostly helpful (yay teachers!) but her initial suggestion for how to translate neurodivergence/neurodivergent is just. No.

神经岔开, my attempt at the translation, might not be right. It's the word for neurology (神经)followed by a word for divergent that I don't think has a negative connotation but I might be wrong because culture differences and while I know more about connotations in Chinese than most white USians, I'm definitely not an expert. I wouldn't be even a little bit surprised if it's wrong or even just something that's not the best, even if it works. But 特殊神经 (special neurology) is DEFINITELY wrong. Calling marginalized neurologies "special" is absolutely not what I'm going for here no no no. The idea that all the neurologies are special except for the neurotypical/close enough to neurotypical one is pretty much the opposite of what I'm going for.

Part the fourth:

But she says I can comment on stuff and send back because she knows this isn't her field so I'm doing that and she helped me figure it out! Looks like I was close, but I actually want 分岔 for divergence instead of 岔开 that I tried, and it was a parts of speech issue (I was fine on connotations.) 分岔 is apparently a noun, while 岔开 is a verb, to make neurodivergence, a noun, either want "adjective neurology" or "neurology noun". I was right about adding a 的 to change between divergence and divergent. There's still some language and expression stuff she's helping me with, but it's not neurodiversity paradigm specific "how do I translate this word that's never been translated before" anymore. Those are taken care of, so I should be good for tomorrow. [If it comes down to it, I'm OK with a professor of cross-cultural communication at a university focusing on foreign language seeing that my Chinese isn't perfect. I'm not OK with bad translations of neurodiversity terms being my fault.]

Sunday, April 13, 2014

A Thought On Everyone Knows

This is just a pretty short thought, really.

It seems like a lot of people hold the opinion "everyone knows autistic people can't/shouldn't go to college." Well... everyone also knows four leaf clovers are hard to find, and here I am having found more than 200 of them this weekend. Just because "everyone knows" something doesn't make it true, but it sure makes it a lot harder for people to prove it false because people will deny us the opportunity to prove them wrong.

So "everyone knows" doesn't make something true. 

Saturday, April 12, 2014

Poem Time! (4 poems)

It's April. It's NaPoWriMo. I'm trying not to let my poem posting fall quite as far behind as it did last year. So here's 4. Warning for cures/death/institutionalization in The Ends, death in Changes, and that none of them are light.


Disabled AND proud.
Disabled AND awesome.
Disabled AND positive.
But, but, but, implying something's strange.
And, and, and, no contradictions here.
No paradoxes of disability and winning,
Here even when the plot doesn't demand.

The Ends

Cure, Death, Institutionalization.
These our our fates in the stories we sideline.
Our rare headlines must be cured.
Cure, Death, Institutionalization.
Is this truly all we are given?
Then we must take,
The worst they can do is status quo.

Shoes (Thank Neurodivergent K for the idea.)

Walk in their shoes, their shoes, their shoes.
The shoes that pinch and rub and blister,
Not built for me, or for those like me.
There are no shoes made for us.
If I can't have my own, there will be no shoes.
No assimilation to lives not my own.
Barefoot revolution.


One leaflet more or less,
Normal or death to my luck.
One wiring same or different,
Mythical goals I must reject.

Friday, April 11, 2014

Tools and Jobs

So as an engineer, I know that different tools are good for different jobs. MATLAB is great for running calculations and making graphs. I'm not about to typeset a paper in it, not sure if that's even a thing it does. LaTeX is great for typesetting though, because it's a markup language. And if I want to design a new part? Yes, I can run calculations related to it in MATLAB, but I'm making my blueprints in a different program (there are several good options for this.) So different tools for different jobs.

I know it as an artist too- if I only need a given stamp once and then never again, a potato stamp is quicker to make and will do the job, but if I'll want it repeatedly, I should make it out of something that, you know, doesn't rot. Linoleum blocks are my material of choice for that.

This applies with activism stuff too. Not gonna lie: a lot of systems in the USA are really broken. Education of disabled students is a mess, mathematics education is a mess, colleges are a mess in terms of actually paying their faculty and in terms of students being able to afford to go, jobs are a mess in a bunch of ways, housing is a mess in a bunch of ways, a lot of things are just an utter mess.

I kind of divide the fixing it stuff in my head into a few categories: Completely overhauling a system is one thing. Trying to make a current system slightly less broken/make changes within the system is another thing. Trying to help the people who've been messed up by the current system is a third.

I actually think that all three can (and often should!) be going on at the same time for messed up systems. If it's broken beyond fixing, or if the problems are with the core ideas of the system, you need the complete overhaul. BUT complete overhauls take time. So another group might be trying to chip away at the current one because that's possibly going to get at least some progress sooner. Yet another might be providing services to folks who've been messed up by the current system.

Within all these categories, there's also the question of how the group is going to work. Do they work on policies going through "proper" channels or do they go outside the people in charge but still semi-within the rules or do they actively break the rules of the system?

ASAN (Autistic Self Advocacy Network) is pretty firmly a user of proper channels. ADAPT is pretty firmly willing to break the rules, what with occupying places. They win different kinds of victories. ASAN is more likely to tell you what accommodations you can expect and what to do within the system if those accommodations are refused. ASAN helps folks who aren't in a position to break the rules. [Remember: ADAPT folks often get arrested, which makes survival way harder, and not everyone is in a position where they can do that and not die.]

ADAPT is the one that did the protests and got the ADA signed, got Section 504 signed.

Autism Network International (ANI) never really lobbied, but they also didn't do things that got them arrested. They're not specifically working from within, but they also don't go out and break stuff. They did community stuff.

If I'm looking for advice on what to put in an IEP (taking kids out of school isn't always feasible,) I'd probably go to ASAN, ANI, AWN (Autism Women's Network), one of the groups that isn't out getting arrested.
If I need to get school to actually do what they're legally required to do, ASAN does have decent advice on that.
If I'm looking for a lawyer because someone got arrested at a protest, I'd probably go to ADAPT.
If I'm looking for a lawyer because I need to file an ADA lawsuit, I'm probably back to ASAN asking if they know anyone.
If I'm looking for advice on helping an Autistic kid learn a skill while respecting their autonomy, I'm looking at AWN and Parenting Autistic Children With Love and Acceptance.
If I'm looking for a social media crisis, I'm probably asking all those groups to signal boost, plus my friends. The Parenting page and AWN are the groups I think would be more likely to do it, and a lot of my friends have shown that they will.

It's really a case of different tools for different jobs. The systems need changed, and someone has to keep people above water during the changes. That's generally going to be different groups, with potentially some overlap between them. 

Thursday, April 10, 2014


Clang, clang, clang, clang, clang, clang
Words ring in the background of my mind.
Try to ignore, try to press on,
Ringing drowns out my world,
Scattered words beg for release,
My mouth will not comply.
Clang, clang, clang, clang, clang, clang
Jumbling and fumbling between thought and deed,
Speech ever clumsy, hands ever yearning
For the keys to let my words free.

Wednesday, April 9, 2014

Yes, Autistic people can get pregnant.

Someone got to my blog by searching "can autistic girls get pregnant" so I'm going to answer now, just so everyone can see the answer: Generally, yes. There could be reasons other than autism that mean a particular autistic girl or woman can't get pregnant: being trans, being too young to menstruate, being on birth control, being to old to menstruate, or having been sterilized (which happens both with and without consent.) I'm sure I've missed a few reasons.

There are autistic men who can get pregnant too: trans men exist, and some can get pregnant.

I don't entirely get how people would feel the need to ask if autistic people can get pregnant, because there's nothing inherent in autism that would prevent it, and a lot of autistic adults are finding out that they're autistic after their kids are diagnosed now. Guess what? If you're autistic and get diagnosed after your kid is diagnosed, you still had kids while autistic. This is a thing that happens.

Also, second and third and fourth generation autistic people are around. Part of how we're around is that autistic people can and do reproduce. Sometimes this means autistic people getting pregnant. (Wrong Planet apparently has or had some discussion forums related to being an autistic parent, including "um, we're both autistic and our kid isn't what do we dooooooo" type threads. So it's actually kind of established that autistic parents can be just as confused by an allistic kid as allistic parents are by autistic kids. Also the existence of such threads requires autistic people getting pregnant. So yes. That is a thing that can happen. Autistic people can get pregnant, carry to term, and have kids. 

Tuesday, April 8, 2014

I am Autism

I am Autism

Here I stand, the epidemic, tsunami.
Here I stand, in your classes, on your streets.
Your teachers, your classmates, you neighbors.
Do I look so fearsome as I stand?
Maybe I should.

Strength you won't know, from bearing the world
Too loud, too bright, too close,
What's a moment's discomfort to me?
Tired of running, I stand my ground.
I am autism, hear me roar.

Monday, April 7, 2014

Disability Fearmongering Rhetoric Disorder


Terrifying statistics, epidemics, children stolen by an unknown foe,
No person stealing us away, an abstract idea of miswired minds,
Of lives gone awry when the menace struck:
Disability Fearmongering Rhetoric Disorder.
DFRD, it leaves families empty and lifeless.
The tricksters laugh on, they need not steal what we throw away.
No need to hide what's presumed gone,
No need to take what's ignored in favor of fear.

So um this one got inspired by Amy's post about Autism Speaks Rhetoric Disorder (ASRD). I used a different name because it happens with other disabilities too and because Autism Speaks isn't even the only offender for autism. It's the biggest one, best funded one, here in the USA, but it's not the only one and I don't want to let the others slip under the radar, especially not Generation Rescue, considering that they actively promote stuff like bleach enemas and chelation.

Autism Fearmongering Rhetoric Disorder (AFRD) is a subdiagnosis of DFRD, with the Autism Speaks specific Autism Speaks Rhetoric Disorder a subcategory of AFRD. April is the awareness month for the entire Autism Fearmongering Rhetoric Disorder subdiagnosis, with Autism Speaks Rhetoric Disorder perhaps the most widespread due to the organization's large reach.

Sunday, April 6, 2014

Neurodivergent Philosophy and Philosophy of Disability and Thoughts

Short thoughts coming from a call for papers. Most of the questions I ask in it are rhetorical: I know the answers.

Philosophy. Neurodivergent philosophy:
Yeah I have no clue what that means. My experience of philosophy is things like, "I think, therefore, I am," and the question "If a tree falls in the forest, does it make a sound?" And as the science-minded person I am, I say, "Of course it does! The impact still causes a disturbance in the air, which is the sound."
I mean, I can think about philisophical things, and I often do (never in the fancy words the scholars in those fields use.) Mixing metaphors with life:

If a disabled person thinks and no one else knows (or maybe they're ignoring it...), are they still? Of course: Like the tree, in the forest, we make a sound even if no one else hears. (Unlike the tree, we are our own observers, but since we're often ignored as our own observers I think the metaphor is still semi-workable. Not as a description of our reality, but to explain to those outside us.) Even if no one else recognizes our thoughts, our minds as useful or valid or real, we're still having them. So if "I think, therefore, I am" is taken as truth (I'm not getting into that right now, just mixing metaphors and applying them to a rhetorical question about disabled lives) then even if no one else knows that the disabled person is thinking, we still think and therefore still are.

And YES, patterns and pictures and other ways of thinking that may or may not involve language totally count. That shouldn't even be in question, but yes: All ways for thought to happen are fine. All minds are fine. Not in terms of they're all neurotypical, because that's kind of obviously not the case, but in terms of they're all minds and they all exist and they're going to exist regardless as part of human diversity so they're fine.

Since the call is still open, here it is if anyone wants it. I think I understand the call, but since I'm not familiar with any of the schools of philosophy I'm not submitting.

Call for Papers Philosophy of Disability: Unflinching Approaches to Ways of Living The most common area of intersection between philosophy and disability studies has been in the field of ethics. This anthology takes a broader approach by seeking to examine both the meanings of disability and the ways in which disability shapes and informs meaningful lives. A guiding consideration for this text is that disability ought not be conceived merely as something to manage or cope with or heroically overcome for the edification of the non-disabled. Instead, contributions should focus on how disability fundamentally challenges us to think anew about topics such as: - history and progress- power, politics, justice, and law- social pressure and activism- community and collective planning and design- embodiment, phenomenology, modality, and spatiality- positive adaptation to chronic pain, loss, and aging- sexuality and familydisability in art and public discourse- professional research methods and questions- new technologies and testing- intersections with other issues, such as inequality, race, and class- mental, physical, and social health- aspirational ideals and visions of the future Submissions from all philosophical traditions are encouraged and will be subject to peer review. Full consideration will be given to abstracts (500-700 words) submitted before May 15, 2014. These will be used to formulate an anthology proposal to an academic press during summer 2014. Authors should also be aware that every effort will be made, with their help, to make the entire collection genuinely accessible. Questions and proposals should be submitted directly to

Friday, April 4, 2014

Disney connections and the ableism in the descriptions

Warning: Discussion of ableist mess, discussion of ableism, murder, abuse, improper medical treatment

EDIT: I got asked what the burrito test is. Essentially: Can a resident microwave a burrito to eat at midnight because they feel like it/are hungry? If no, probably an institution and abusing power imbalances.
There is an extended burrito test with a bunch more levels as well, but a surprising and scary number of residential places for disabled people fail even this level.

I read this New York Times article. I wouldn't have read it on my own, I could tell from the title that it was going to be an ableist mess, but when a disability studies professor is looking for Autistic reactions to a [frankly pretty terrible] article about autism... yeah I'll sometimes dig through the pile of ableist nonsense. And that's what it is, almost entirely. [There are a few good bits where parents make a breakthrough in their own understanding.]

Heck, the first sentence is terrible. “In our first year in Washington, our son disappeared.” Way to buy into the disappearing and kidnapping and autistic people aren't really there rhetoric. Do you know how much mistreatment gets justified because we (all the disabled people with speech issues, not just autistic people) supposedly aren't really in there and supposedly don't know what's going on? Do you know the kinds of abuse those of us with mental and cognitive disabilities received at the hands of caretakers who believed we could not feel pain, that we weren't really there? Do you know how recent that is? My aunt, who I'm named for (her name was Hillary) was often not given needed pain control medications for medical procedures because of her disabilities. Amanda Baggs was not given propersedation for surgery just last year. I know about Amanda because Amanda blogs, but there are more cases like this (and ones where the surgery doesn't happen, where autistic people are just allowed to die) all the time, because people think of us as not really there, as empty shells. Is this rhetoric a loving parent should ever go anywhere near? NO. But it's the first sentence. You know this is going to be a long and rough ride.
It continues. They describe looking for ways to help their child, ways to figure out the regression (and there were skills lost, this happens sometimes, not just in early childhood) as looking for clues to a kidnapping. I'd look for clues to overload and burnout, also to see if seizures are happening, you know, things that can often cause a person to lose skills or not have the resources to use skills they would still have if only they had the energy, but no, it's clues to a kidnapping.

Then they vanish. That child's gone. Enough with the “not there” rhetoric, parents and caretakers and doctors. Enough with the idea that autism struck.

And maybe, just maybe, if a kid seems happy and focused while doing something you don't understand, the assumption should be that they're doing something with a use you don't understand rather than something pathological? Maybe the assumption that our misunderstood speech is gibberish could fall to the assumption that maybe we're running words together or having pronunciation issues? Kids have pronunciation issues sometimes, you know. [My “r” sound is still not-quite-standard for English, folks kept telling me it was in the back of the throat and I couldn't make that one, but in sixth grade I started taking Chinese and I learned to make the “r” sound used in Mandarin Chinese. Which is the one I use in English as well because it's a lot closer than the “w” I used to make.]

Owen's repetition of “Just her voice” as they eventually figured out it was, that? Oh, I'll totally buy that Owen is making the connection between losing oral speech himself and Ariel losing oral speech. People make connections like that, and when someone who can often talk or who used to be able to talk now can't? Yeah we notice, cause shocker, we didn't vanish. Speech giving out on us is very different from us vanishing.
Then we hear from the doctors. They need to shut up and listen to Autistic people about echolalia and scripting: Yes, sometimes it's not the words we're intending to say, Emma's mentioned that and her mother expanded on it, but often it's how we learn language and often it's how we put together our language and it absolutely can be used for communication. And, oh hey, we get parents being happy that kid isn't flapping as much. STAHP. Stimming isn't the devil, it's something we do for a lot of reasons including calming ourselves down. Trying to keep us from stimming, though, that absolutely can be the devil.
Ugh assumptions that we don't understand what's being said to us. Whyyyyyyy. [Though deciding that it doesn't particularly matter, the important thing when kid goes to theme park is that kid is happy? I can get behind that.]

I'm glad that they figure out Owen is thinking interpretively when he says something that makes it pretty obvious, but the shock that a kid can think interpretively? This is not presuming competence. When you presume that disabled people can't do a thing, you don't give the opportunity to prove that we can. And often, we can. Often, we know more than people realize we know. Not being able to speak is different from having nothing to say. We have rich experiences, same as everyone else.
[Reminds me of the “of course he can't read it” bit that I think comes later. You don't know that. Plenty of autistic kids do start reading before they start talking. Neurodivergent K did. This happens. I don't know that he can read, but I'm mistrustful of parents basing “can't read” on “can't read aloud.”]
Oh here we are. Iago, the parrot. That was actually a smart move. I'm not a fan of deception, but I'm not going to deny that “work within echolalia as a character from a movie your kid echolails” is a good idea. It's a really good idea, actually, working with what your kid does in order to help them learn stuff in the way their brain works.

At the point of the Iago breakthrough on the parental side, they do seem to finally have some understanding of how Owen is learning. [Yes, this is a breakthrough of the parents figuring something out, likely happening around the same time that Owen locked the skill down enough to start coming out in sentences again. And yeah, going really fast from pretty much no speech to full sentences is a really common autistic thing. I don't know for sure that the parental interpretation we're seeing is correct, even here, but this is at least an interpretation I'd buy until and unless Owen says different. It makes sense, and working with it got words and sentences spoken to other people.

Uneven, unsteady progress is kind of the name of the game for a lot of autistic people, so I'm not surprised that Owen's doing this too. And the frustration of a school administration deciding that a child is just too disabled, boy, do I sympathize with Owen and his parents there. That's a horrible thing to hear, and since it's a private school, they can do that. That doesn't make it any better. And it stings to hear ““Look, not picking up social cues is just too great a burden.” Because guess what I have trouble with? Guess what, at 21 years old, as a triple major in a pretty freaking selective study abroad program, can't consistently do? (the program directors have done a really good job protecting me from the nonsense of a university that initially didn't want an Autistic student and probably wouldn't have taken me at all if the USA side hadn't pointed out that it's bound by the ADA, even if the Chinese side wasn't.) So yes, I'm writing this while in a program that didn't want me because of autism awareness, telling you that I have this problem too. My advantage is that I'm good with language. Making oral speech happen is iffy, but when it's working, I can be very good with it, too.

And of course Owen knows. Of course he does. The face that his parents have learned to recognize as one where he fears he might cry, of course he knows what's going on, being rejected for who he is. (Why is he afraid to cry? Has he been pubished for meltdowns?)
Ok, so why is the term for stimming “silly.” No. No. No. That's not what anxiety-stimming is (and that's my guess for what's happening, some sort of upset-stimming.)

Eventually we get to another parental breakthrough, of learning Owen's language- connecting to the idea of the sidekick, and Owen's statement that “no sidekick gets left behind.” It's terrible to see the idea of only ever being the sidekick, not the hero of his own story, but the sidekick to someone else's, so internalized, but if it's going to be internalized, at least he's doing it by seeing the value in himself and others, in what they are good at. And it is true that the sidekicks in Disney movies (especially the princess ones) are more fleshed out, given more flaws that real people have, than the main characters have. This is actually true of a lot of stories, giving fewer identifiable quirks to the hero's so that more people can paste their own identities onto the hero's face[i read an article about this recently, where's the link], but here's the issue: what if you're told you can't be the hero, explicitly or otherwise? What if you better identify with real characters with real quirks? It's those of us with the biggest differences from that mythical but privileged average mind, that mythical but privileged “normal” body, who are told we can't be the hero and left to identify with the sidekicks. It's those of us who most need to be told we can be the hero of our own story who are left to be sidekicks.

Finally, we see a therapist who seems decent: One decides that the family realization of using Owen's interests to help him learn is actually smart. Shocker, it goes well.
Now we get an interlude for the monetary cost. I could see it as an argument for universal education, for universal health care, but in a piece about an autistic person and connecting with them? Unless the point you want to make is that the system is very, very broken, no, this does not belong. It fits too well with the burden rhetoric, that same rhetoric that makes people think it's OK to kill us. No. Stop.

Worry about the future is very real. I won't argue with that, though their nightmare probably shouldn't be a nightmare. Owen doing well in his program, starting a Disney club, is also cool, though I worry about residential programs because I know what kinds of freedoms they tend to take away. I wonder if this program passes the burrito test. The Disney club, though: I will make no effort to deny how cool that is. That's win. Starting and running a club based on an interest, finding others with similar interests, the club growing? That is wonderful.

The insights made when people interact on our interests? Also wonderful. The shock and astonishment at these insights? Not so wonderful. It's missing the idea that we're interested in things for reasons, something that tends to get lost when our interests are pathologized. This happens unfortunately often, and it cuts off a lot of opportunity for growth.

The end of the article, I mostly like. I think that's because it's mostly stuff from Owen, his own insights, like how life isn't a spectator sport and how the gargoyles are different because they're vessels for things that the character already knows but maybe needs a trick to access.

But the realization of “Oh jeez, Owen already is an adult.” That's a thing. I go back through this. Owen's about a year older than I am. How does he feel about this article, about the book that this is apparently adapted from? Did he give permission for his life to be spread across the page like this, to be spread across the web? The internet is forever, if and when he applies for a job potential employers will read this article, and they will see what he was like at 3 and 4 and 5 and 6. I'd love to be able to trust that Owen gave permission for this, freely, but without it being stated somewhere explicitly, I can't trust that. That's a sign of how people tend to think of Autistic people: not fully people, not deserving of the same privacy as others, obligated to spread our lives on the page for theeducation and edification of the privileged norm.

Thursday, April 3, 2014

Two Days Poems

April is NaPoWriMo. (It's also Camp NaNoWrimo, but I'm not doing that.)
NaPoWriMo=National Poetry Writing Month. NaNoWriMo=National Novel Writing Month, for the curious.
What this means is I'm writing a poem a day in April. Here's the April 2 and April 3 poems.

April 2: Clovers

Looking over a 4-leaf clover.
Overlooking Awareness Day, intentionally.
Preferring my clovers, drawing my metaphors:
Clovers and autism between.
One helps find another.
One analogizes another.
What am I?
Four leaves, clustered, not as rare as believed.
Five leaves, surprising many by being real.
Can the clovers explain my existence?

April 3: Allism

Life with allism?
Does "lacking autism" disturb?
Is there a severe lack of stimming?
It's tragic, you see, this living with lacks.
Not the lives, just the words written of them.

Wednesday, April 2, 2014

Words of War

They come again with their words of war,
Awareness, vigilance, combat this new menace!
This stealthy thief of lives,
No need to take what you believe already gone,
The trickster-gods have their laughs.

And I, whom they seek to “free”?
I prepare to meet their charge.
Don my armor orange, sharpen my pointed words,
If it's a battle they want, it's a battle they'll have.
The tricksters, the tricked, and the living.