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

APA: Hillary, A. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from http://yesthattoo.blogspot.com/post-specific-URL.

Monday, April 30, 2012

Yes, That Too to ‘I Wish I Didn’t Have Aspergers: #AutismPositivity2012”

Yes, sometimes being autistic stinks. Sensory issues, not getting jokes or sarcasm, having people assume you have an attitude because YOU HAD NO CLUE they were joking/teasing/being sarcastic/asking a rhetorical question. Those parts are a pain. But:
That hand flapping? It's a whole other language for people who understand it, and it usually means OH MY GOD I AM SO HAPPY!!!! Because Autistic and happy are not mutually exclusive. Aspergers specifically and happy are also not mutually exclusive.
When I finally do get to an actual logic-based debate, I can do some serious damage. Like, I didn't do my research at all, I have no evidence, but my opponent just dropped a piece of evidence that actually supports what I want to say if you look at the logic and the science of the matter. And that one mistake will let me win the whole debate anyways. That happened. In college. In an honors class.
And autism is not mutually exclusive with going to college. I don't really do the party thing because I'm just not that interested, but I have had a roommate the whole time, lived on campus, and it's been fine. My professors like me. Even the roommate I was a bad match with is a friend- we just shouldn't room together. The issue there wasn't even an autism problem. It was a ``I go to sleep at 8pm. You go to sleep at 2am. That no workity," problem. I have three majors. College is AWESOME.
And those three majors let me smunch together my ``autistic obsessions." (Life is much, much happier if you admit to having them, decide it's totally fine, and then have fun with said obsessions. It really is. MUAHAHAHAHAHA math. Also MUAHAHAHAHAHA purple. And sewing. And geometric designs. And nanotech.)
I can't speak for you (no one can but you, no matter what anyone says about them speaking for you,) but I know that I personally prefer to stay autistic. This preference is legitimately to the point where if the person offering the cure decided to force the issue, I would probably go into ``I am fighting to kill" mode before letting the them do so. I'd go for the peaceful stuff first, but if it comes down to it, I am staying autistic. Period.

P.S. I totally was not always this cool with being autistic. Mainly when I was still young enough that special ed people could have been abusive if they found out, and gotten away with it by calling it therapy. I was actually the first person to put the pieces together that I was autistic, and I hid it for the longest time. It was seven years from when I figured it out until the second person, a fellow autistic who apparently has autism-dar (like radar) or something, figured what was going on. After that, it was another year until anyone with authority started getting suspicious. By that point, I was a junior in high school who had already gotten a 5 on the AP test for BC Calculus, so it wasn't as if anyone was going to get anywhere trying to use the ``autistic=incompetent" fail. And even though I really did know, it wasn't until very recently that I fully accepted the fact that yes, I am autistic. Not having been diagnosed also meant that no one called it wandering when I went out for walks on my own. Because I did spend a weekend in Beijing entirely alone about a month before I turned seventeen. It was AWESOME, at least in retrospect.

Copycat Warning for TPGA

Babble.com has a list of ``Top 30 Autism Blogs." It's here: http://www.babble.com/baby/baby-development/top-autism-blog-nominate. Number 2, Thinking Mom's Revolution, looks like it's trying to get hits by having a name like The Thinking Persons Guide to Autism, and the stuff they write is just scientifically awful. It says autism can kill, among other things. Autism doesn't kill. Autistics sometimes GET killed by others. Very different statements. They were #1 for a while, but people did get the real blog up there, which is good. (I'm up there too, but I only have 4 votes right now, so no one's really gonna find me.)

By Whose Definition?

Autism is a word. It's the word which is a noun and which applies to people whose brains are wired differently in certain ways. I am one of those people who can be labeled with this word. Disability is also a word. It is the word for what people have when their abilities are different from what society thinks their abilities should be.
Don't take this to mean that I'm saying that as words, these do not matter. Everything you have read on my blog, everything you have read about autism or anything else, every moving speech you have read or heard, were all made from words. If words didn't matter, I would have no reason to write this. But specific word choice does matter, and I am writing.
I am totally cool with the fact that I am autistic. I am totally cool with the fact that being autistic means my abilities are different. But according to my view of what I should be able to do, I'm not disabled. (According to society's view of what I should be able to do, I am disabled. But I think society is 笨死了, which essentially means REALLY STUPID.) See, if a person can handle three majors, two jobs, nanotechnology research, and two sports, I happen to think that's enough. Speaking two languages is an added bonus.
Society apparently wants me to be able to live alone, which is probably a bad idea (not impossible, just not a great idea either.) My brain and keeping a space in liveable condition without reminding don't get along so great. With reminding, I can do it, but just living with someone who will remind me is much simpler. Society also thinks I should be able to go to bars and parties and malls. I have no interest in bars, since I don't have any interest in drinking or in socializing with drunk people. College parties are loud and scary and full of drunk people. They also have a tendency to have flashy lights if there is dancing. I don't get seizures from it, but I am not a happy camper when there are flashy lights. Malls are loud and crowded. If I'm just passing through quickly to get one thing and get out, I can handle it. But I would find a day at the mall to be a horrible punishment, not something to look forward to. Society thinks I should be able to wear stockings, leggings, tights, and blue jeans. They don't think I need to be able to wear all of those at once as far as I know, but even one can drive me absolutely nuts. It's just not going to happen. I have a few pairs of really loose men's khakis for when I'm in the chemical engineering lab, and that's about what I can handle. Society thinks that my flapping my hands is pathological. In response, I again call them 笨死了. Society thinks I should make eye contact. I point out several cultures in which eye contact has been considered rude, and I also point out that being able to fool you into thinking I'm making eye contact should be enough, since you don't know the difference.
I could continue, but I think I've made my point. What society thinks I should be able to do and what it actually matters that I'm able to do are 两件事儿. (two completely separate matters/situations). By what society thinks I should be able to do, I'd have to admit to being disabled. By what I think I should be able to do, not so much.

Sunday, April 29, 2012

Two Stories With One Different Detail/ Why I Don't Tell People I'm Autistic


Here are two stories.

On a field trip to the New York Chinatown, a girl notices a restaurant which looks like it will have proper 牛肉拉面 (beef lo mein), something she has not been able to find for nearly a year and which she has not yet been successful at making herself. She notes the location of the restaurant on her mental map. Later in the day, there is time for visiting a museum, gathering the information needed to complete an assignment, and exploring Chinatown. After visiting the museum, she sets off alone for the restaurant, since she already has all the information she needs for the assignment. The restaurant does have proper 牛肉拉面, just as she hoped. Once she finishes and pays her bill, she wanders Chinatown, briefly becoming lost after taking a wrong turn. She returns to the meet-up location approximately ten minutes early with a litchi ice cream in hand, finishes the ice cream, pulls out a book, and begins to read until her classmates return.

You might think this girl to be a bit weird, but as long as you know there wasn't a rule dictating a group size, you're probably OK with this. She's just a bit of a loner.

On a field trip to the New York Chinatown, an autistic girl notices a restaurant which looks like it will have proper 牛肉拉面 (beef lo mein), something she has not been able to find for nearly a year and which she has not yet been successful at making herself. She notes the location of the restaurant on her mental map. Later in the day, there is time for visiting a museum, gathering the information needed to complete an assignment, and exploring Chinatown. After visiting the museum, she sets off alone for the restaurant, since she already has all the information she needs for the assignment. The restaurant does have proper 牛肉拉面, just as she hoped. Once she finishes and pays her bill, she wanders Chinatown, briefly becoming lost after taking a wrong turn. She returns to the meet-up location approximately ten minutes early with a litchi ice cream in hand, finishes the ice cream, pulls out a book, and begins to read until her classmates return.

Slightly different reaction? Knowing the girl to be autistic, the words alone, lost, and wander might freak you out, and you might be wondering why she wasn't better supervised. I mean, clearly the girl is a wanderer!

Here's the thing. The second story is word-for-word the same as the first, except that ``a girl" is replaced with ``an autistic girl" in the first sentence. One detail, and everything changes. Also, this is a narration of a small part of what I did yesterday, on a field trip to New York's Chinatown with the Chinese Flagship Program. I did this to make a few points.

One: That's why I tend not to TELL people I know off-line that I'm autistic. They might proceed to have problems with my doing things like that or like spending a weekend alone in Beijing. There is an unfortunate tendency to suddenly presume incompetence as soon as you know someone is autistic, even if you presumed competence before. Irrelevance to being able to do a math proof or an engineering problem means a lack of impetus, but if this presumption of incompetence weren't an issue, I'd probably eventually get around to it.

Two: The difference between a loner and a wanderer is a diagnosis. As soon as you are autistic, leaving the group and going places alone makes you a wanderer, even when there wasn't an official rule saying you had to be with the group at the time.

Three: If you call someone a wanderer and go find them quickly before giving them a chance to show that they are, in fact, competent to be traveling unsupervised, you may be preventing perfectly competent, well, wandering. Because not all who wander are lost, and this applies to autistics too. (Also, not all who are lost lack the ability to get themselves un-lost.)

Friday, April 27, 2012

Is it really that complcated? (energy crisis)

I'm a bit of a cynic about government. I really am. And as a science person, I'm kind of aware of how much junk science is floating around. So: The world is warming up. The effect of greenhouse gasses put into the atmosphere by people isn't negligible. Oil and coal will both eventually run out, and I'm not sure exactly when. Renewable/sustainable energy is clearly a GOOD IDEA. So, here's what I think we should do:
As a country, we give a pile of subsidies and tax breaks to oil companies. If we drop those and put the money saved on that into 1) Some programs to help people pay to heat their homes, because this will make oil prices rise and we don't want to make people homeless, 2) Making public transit programs less broke, and 3) research into sustainable energy, good things happen. First off, gas being more expensive and improving public transit programs by moving more money into them (possibly cut the subsidies to auto makers as well, but that would need to be after the economy is back in shape), people might actually use public transit, which is good for making oil last longer and polluting less. Second, research makes the sustainable stuff start working better sooner. Third, taking subsidies away from oil means that renewable stuff will be cheaper than oil sooner. When renewable energy is cheaper to use than oil/coal, people will switch based on pure economics, and it will all be hunky-dory.
Yes, I know it's not actually that simple. For one thing, that plan will never get passed. But since running out of oil before we get anything sustainable up and running is 笨死了, possibly literally (the Chinese would literally be stupid to death/dead of stupid), come up with a better idea or use mine. If you have a better idea, have at. I am totally game for an economics discussion to distract me from all the junk science I keep seeing about autism. 

Thursday, April 26, 2012

It's Official

Much to the complete lack of surprise of anyone who knows me well, especially those who also know about autism, I was diagnosed today. No more grey area between self-identified and diagnosed (I would consider two psychologists saying ``yeah, you totally fit, but I'm not officially going to diagnose you without going through the DSM item by item" and then me reading through it myself and concluding that I match to be a bit of a grey area between self-identified and diagnosed.) It's been somewhere between ten and eleven years since I read an article about an autistic child, who I think they considered to be high functioning whatever high functioning really means. I saw a lot of myself in him, read the list of traits of autism, and went ``Oh. I meet a lot of that, actually." So I asked my mother ``Am I autistic?" She said no, and that was the end of it for a while.
Fast forward to junior year of high school and Splash at MIT. I meet a fellow Autistic person (goodness, I am officially having paperwork that says I'm an autistic person! That's new) and she can tell. She tells me. I feel a bit awkward about this, since in the time since I read that article and asked my mother, I have seen some of the pop culture of autism. I can talk. I have friends. Surely I'm not autistic? So I take a look at the traits of autism.. Crud. That IS me. Wow. This wasn't the DSM, which I had not yet heard of, but it was enough to bring the suspicion back up.
And a few months later: I was in ``group" and one of the other girls there was on the spectrum, specifically Aspergers. It came up. She said she thought I had it too. The group leader, who was also the school psychologist, agreed that I probably did. (That's the someone noticing anyways from I Hid, by the way.) It came up a few more times over the course of the year that I was probably on the spectrum, but it never really went anywhere. When could it have? I went back and forth between two households since my parents are divorced. (If you quote the fail and false statistic about how many parents out autistic kids divorce, you are so doomed. Divorcing over a disorder you don't know your kid has is... hard to do, and the statistic isn't true anyways.) I also played a sport every season and took really high level classes.
Now we get to senior year (I spent a month of the intervening summer in China, during which I spent a weekend alone in Beijng, in case you're wondering where summer went.) Group, chorus, and tenor bass choir have all switched meeting times. Chorus and tenor bass are cool with each other, but group will interfere with one of those four meetings in five. Sad. So I told the people in charge of group that I'd be leaving. And they thought it was in my IEP that I had to be in such a group. So I informed them that I didn't HAVE an IEP because no one had ever diagnosed me. Oops. And so I left. (Apparently they had confused me with someone else.) Hang with the fellow Autie at Splash and Spark again, shock everyone by deciding to go to URI, and head off to China again.
First year of college: By this point, I'm fairly sure I'm on the spectrum. Trick or treat for UNICEF with a bunch of girls on the spectrum, fail to flinch when we are described as ALL being on the spectrum. Hang at splash, hang at spark. Also, get engaged.
Second year: She's not at splash. Hang at spark. Start a blog that is currently mostly about autism stuff. Get diagnosed about two weeks later. Then____?

Murder, not Mercy

Trigger Warning: Murder/Abuse of autistic people

xkcd.com/386. Go ahead. Look it up.
Read it. Laugh. Agree.
It doesn't matter that someone is wrong on the internet.
It happens all the time.
Most of the time, I'd agree.
Most of the time, I don't care if someone is wrong on the internet.
But this time, this kind of wrong, I have to care.

If your wrongness on the internet didn't endanger the lives of a whole group, I wouldn't care as much.
If your wrongness on the internet didn't endanger the lives of my friends, I wouldn't care as much.
If your wrongness on the internet didn't endanger MY life, I wouldn't care as much.
But it does.

You might say I'm being over-dramatic.
George Hodgins begs to differ.
Daniel Corby begs to differ.
Every one of us killed by our caretakers while you called it mercy begs to differ.
Every one of us allowed to die while it was recorded as an accident begs to differ.
But they are dead, and I still live. So I will beg to differ.

If you call us tragedies, if you call ending our lives mercy, then one by one, we die.
I don't want to die.
I want to live.

You might still say I'm being over-dramatic.
You might say no one will try to kill me. I function.
You might say I don't know what it's like to be as disabled as George was.
You might say I don't know what it's like to have a child as disabled as Daniel was.
And I don't.
But it doesn't matter.

It doesn't matter if I specifically know these people wanted to live.
It matters that you didn't specifically know they wanted to die.
It doesn't matter if I don't know what it's like to be so disabled.
It matters that the killer didn't know.
It doesn't matter that I don't know what it's like to have such a child.
It matters that a parents job is to protect their child.
Killing someone to protect them makes as much sense as silencing someone to give them a voice.
Both are our reality.

You might say I have no empathy for the parents who made that choice.
I don't. I have no clue how they felt.
You might say I have no sympathy for the parents who made that choice.
I don't. I got the part where they murdered their children, which you apparently missed.
You might say that it's wrong to judge when I don't know their lives.
It might be. I still know they murdered, and that can't happen again.

I'm not asking you to call the lives of those parents easy.
I'm not asking you to personally run the schools those children went to.
I'm asking you recognize the victims were human.
I'm asking you to react as you would to the murders that these were.
I'm asking you to stop mistaking murder for mercy.

I ask because if the wrong person hears you call it mercy, another one of us dies.
I ask because if the wrong person hears you call it mercy, and if that wrong person knows too much,
that next one of us could be me.

One Person


One person. One person less can fall to the idea that autistic is like retarded. I honestly think that might be my biggest achievement of the day, that one person just found out that yes, the top of the class CAN be autistic. Because that's what I was in my recitation for international politics. When we played Jeopardy with the answers from the classwork, I was the single biggest point scorer and my team decided that I was the reason they had won. Things like that mean that almost regardless of how weird I am, people weren't really going to guess that I'm autistic. So on the last day of recitation, I told the TA. I told him that I'm autistic, and that if anyone ever tries to tell him that autistics don't understand what's going on around them or that they're not as smart or that people can always tell if someone is autistic or not, he should remember me, and ignore them.
He was surprised. Most people who don't know me that well are. (My friends from high school displayed a complete lack of surprise to hear that I'm on the spectrum. They were more surprised by the fact it had taken so long for anyone else to figure it out.) But he got the point. He understood, at the end, why I winced whenever my classmates said something logically inconsistent with what they had said a moment before. He understood why I wasn't looking him in the eye when I told him, and that I had never actually looked him in the eye all semester. (I had used the forehead trick, though.) And most importantly, he understood that it is perfectly possible for the loud smart kid to be autistic, and that autism and intellectual disability are two very different things, neither of which make a person less of a person. My TA is only one person, but he is still one person who won't make that mistake, if that makes sense to anyone besides me.

Wednesday, April 25, 2012

Why I don't try as hard to pass

As anyone who read the poem I Hid might be able to tell, I used to do my best to pass. I had quiet hands. I looked people in the forehead (except on good days, when I could and still do look people n the eye.) I'm not trying so hard to pass anymore. If all of us who function choose to pass and to not tell anyone we're autistic, then the picture of autism which says autistics are universally non-speaking children in the corner or (insert whatever narrow picture of autism you've heard before) isn't going to change. There won't be any examples of perfectly functional people who live perfectly functional lives and ARE OPENLY AUTISTIC. I say openly because someone who is trying to pass and who no one knows is autistic can't really be used as an example of an autistic who has a full life for the simple reason that no one KNOWS. So, for the sake of autism advocacy, it seems like the thing to do is to admit to being autistic.
That's not my real reason for allowing myself to flap in public, to not fake looking people in the eye on my bad days, to write when I am non-speaking rather than let people think I'm just quiet today. It's because I can't hurt myself anymore for the sake of keeping other people from hurting me. Internalizing that I shouldn't flap, that a failure to look people in the eye is a failure, and that the inability to talk means having nothing to say was hurting me. Internalizing that the way I am is somehow broken and that the best way to protect myself from hate for being autistic is to make sure no one knows I am autistic. When someone gets raped and people say that they were asking for it because of (insert whatever) there is outcry that dressing or drinking does not constitute asking for it, and that asking her to change is not the way to go. When someone is bullied for being autistic, the answer is to act less autistic. Logic, guys? Hate is hate, and the answer ain't to act like you aren't a member of the target group. The answer is to address the hate. So I will flap. And I might not look you in they eye. And if you are hateful for it, if you demonize me for it, the violence is your fault, not mine.

Tuesday, April 24, 2012

Long Day

So, you may have heard that many autistics like to stick to a routine. Give me some warning that my routine is about to fly out the window, and I'm totally fine, but if it changes at the last minute, I'm not too happy. Oversleeping, missing the bus, and therefore missing a class counts as a last-minute change. That threw off the rest of the day to some extent.
My other two classes of the day come in a row, starting six hours later than the first. I had enough time to recover, at least, before I went to my hardest two classes, which are, of course, in a row. They are both graduate level math classes. I am a sophomore. One, I am the only undergraduate in, but I do meet the prerequisites except for the one where you're supposed to be a grad student. The other has a super senior in it, so I'm not the only undergrad. However, the teacher is known- for being a great guy and a horrible teacher. When I'm actually qualified to be in the class, my OMG MATH PWNAGE can make up for that, but I am missing actual prerequisites for that one, and it is handing me my tuchus. And it's April. Autism Awareness month. I'm already nuts from having dealt with people who learned all they know about autism from pop culture and pop science all stinking month. I'm nuts from dealing with people who don't understand the scientific method and who think that the ability of certain illnesses to cause symptoms which look similar to autism means that autism is actually those illnesses/therefore curable. I'm nuts from dealing with the anti-vaccination crowd. So throwing me off my routine and then sending me to my two hardest classes isn't going to do good things for my comprehension of what's going on. And the professors don't know I'm autistic for the simple reason that my autism doesn't cause problems that are relevant to my performance in those classes. I have no REASON to tell them. My being autistic isn't the problem. Other people being stupid about autism sometimes is, though.

From Six Billion Secrets

General TW on the links, since I'm not sure what the comments are going to be like

Two posts of mine to SixBillionSecrets, both about being autistic.

Secret
Secret
And someone else's which made a point that needs to be made. Autistic and intellectually disabled are two different things. Act like it. And don't dehumanize EITHER.
Secret

Monday, April 23, 2012

A Silly Poem

I've written some heavy stuff, and I'll be writing more heavy stuff, but I do sometimes like to have fun. So have something fun I wrote about what madness can ensue when you're acting like you're still at camp after getting home.

Back From Camp:


Just back from camp and singing grace
People thinking I’m from outer space.

Clap clap, tap tap tap, clap move over
Clap up tap switch slam CRASH!
Played the cup game, broke the glass
I should’ve known that fun couldn’t last.

Now I’m back from camp and singing grace
People thinking I’m from outer space.

Buddy board, flushie buddy, hopper, and unit,
Will someone tell me where’s the med kit?
Never mind, I’m home today
But in my head the camp words stay.

And I’m back from camp, still singing grace
People thinking I’m from outer space.

And finally- I understand how,
This song is NCA, it doesn’t matter now!
Someone called out Purple
And today I didn’t turn.

I’m back long enough to not sing grace
But people still think I’m from outer space.
I’m back long enough to not sing grace
But people still think I’m from outer space.

My Response to a List on theautismproject.org

Link to the original list: 

http://theautismproject.org/autismunderstanding.php

10 Things the Person with Autism Wishes you Knew 

My Response:  I personally don't like to be described as a ``person with autism," but as an autistic. Not the main point of this response, but most of the autistics I personally know share this preference.

(excerpts from Ellen Notbohm)

1. Behavior is communication
All behavior occurs for a reason.  It tells you even when my words can’t, how I perceive what is happening around me.  Negative behavior interferes with my learning process.  But merely interrupting these behaviors is not enough; teach me to exchange these behaviors with proper alternatives so that real learning can flow.
Start by believing this:  I truly DO want to learn to interact appropriately.  Negative behavior usually means I am overwhelmed by disordered sensory systems, cannot communicate my wants or needs, or don’t understand what is expected of me.  Look beyond the behavior to find the source of my resistance.  Keep notes as to what happened immediately before the behavior: people involved, time of day, activities, setting.  Over time, a pattern may emerge.

My Response: They're totally right that just interrupting these behaviors isn't enough. And they're totally right that behavior is communication, and that you need to see what is causing resistance. But you also need to be sure that the behavior is actually negative as opposed to self-regulatory. Stimming, for example, is not negative, and calling it inappropriate in general is discriminating against us. (Actually dangerous stims should be replaced, but things like hand-flapping and spinning and rocking and humming are not bad behaviors and shouldn't be stopped. If trying to stop those is what leads to resistance, well, that's a case where the resistance means ``You shouldn't be trying to make me do this." I'm not sure where the autism project stands on this, but I wanted to make sure there was no room for misinterpretation.

2. Never assume anything  
Without factual backup, an assumption is only a guess.  I may not know or understand the rules.  I may have heard the instructions but not understood them.  Maybe I knew it yesterday but can’t retrieve it today. 

Are you sure I really know how to do what is being asked?  Are you sure I actually know the rules?   Stick with me through enough repetitions of a task to where I feel competent.  I may need more practice than others.  

My Response: I also might not have picked up on your sarcasm. I also may have taken you too literally. You might have phrased your statement as a request, at which point I answered ``No." It wasn't an attitude. YOU ASKED A QUESTION. I ANSWERED. But yeah, everything they said could totally be the difficulty. 

3. Look for sensory issues first
A lot of my resistant behaviors come from sensory discomfort.  One example is fluorescent lighting, which has been shown over and over again to be a major problem for children like me.  The hum it produces is very disturbing to my hypersensitive hearing, and the pulsing nature of the light can distort my visual perception, making objects in the room appear to be in constant movement.  Or, maybe I need to sit closer to you; I don’t understand what you are saying because there are too many noises “in between” – that lawnmower outside the window, Jasmine whispering to Tanya, chairs scraping, pencil sharpener grinding.  Ask the occupational therapist for sensory-friendly ideas for the classroom.

My Response: Don't wait for ``resistant behaviors" before looking for sensory issues. If you know what sensory issues I have, look as we enter. If I spot one and say something, fix it before I have problems with it. If I look uncomfortable, look for sensory issues. If I suddenly go non-verbal or it looks like I might be nearing overload, meltdown, or shutdown, sensory issues should be the first thing to check for, especially if I was ``fine a minute ago" and/or just changed environments.

4. Provide me with a break to allow for self-regulation before I need it.  A quiet, carpeted corner of the room with some pillows, books, and headphones allows me a place to go to regroup when I feel overwhelmed, but isn’t so far physically removed that I won’t be able to rejoin the activity flow of the room smoothly.

My Response: Can I go berserk on everyone who doesn't know this? Also, do not force me to take said break if I don't want it or delay said break because it isn't ``time." Make the space available.  Feel free to suggest using it if I look like I need it. If I say no, don't push it. If I ask or up and move to the space, go with it.




5. Tell me what you want me to do in the positive rather than the imperative
“You left a mess by the sink!” is merely a statement of fact to me.  I’m not able to infer that what you really mean is “Please rinse out your paint cup and put the paper towels in the trash.”  Don’t make me guess or have to figure out what I should do.

My Response: Seriously? How many times do we need to tell you that you need to TELL ME what you want me to do. There are times when you're dropping a hint that someone not autistic would miss, and then you get mad when we miss it. There are also times when it is something like the sink being messy, and if I weren't autistic I'd have gotten what you were saying. But I AM autistic. I take things literally. A statement of fact does not tell me what to do.

 
6. Keep your expectations reasonable
That all-school assembly with hundreds of kids packed into bleachers and some guy droning on about the candy sale is uncomfortable and meaningless to me.  Maybe I’d be better off helping the school secretary put together the newsletter.

My Response: Looks like a repeat of the sensory issues thing to me. That all-school assembly is a sensory overload waiting to happen.

 
7. Help me transition between activities
It takes me a little longer to motor plan moving from one activity to the next.  Give me a five minute warning and a two minute warning before an activity changes – and build a few extra minutes in on your end to compensate.  A simple clock fact or timer on my desk gives me a visual cue as to the time of the next transition and helps me handle it more independently.

My Response: Not all of us need this, but some of us do. If this has been an issue with a specific autistic, do so for that specific autistic.

 
8. Don’t make a bad situation worse
I know that even though you are a mature adult, you can sometimes make bad decisions in the heat of the moment.  I truly don’t mean to meld down, show anger, or otherwise disrupt your classroom.  You can help me get over it more quickly by not responding with inflammatory behavior of your own.  Beware of these responses that prolong rather than resolve a crisis:
  • Raising your voice: I hear the yelling and shrieking but not the words.
  • Mocking or mimicking me: Sarcasm, insults or name-calling will not embarrass me.
  • Making unsubstantiated accusations: I will argue with you.
  • Invoking a double standard.
  • Comparing me to a sibling or other peer.
  • Bringing up previous or unrelated events: I will get confused.
My Response: This sounds specific to a child in a classroom, but it totally isn't. Also, sarcasm, insults, and name calling DO embarrass me. Embarrassing me just isn't going to help you. The previous/unrelated events might not confuse me. Specific to me, I can tell you that it won't. But I will dismiss it as irrelevant to the current issue, and I will do so to your face. That's not going to help de-escalate.

9. Criticize gently
Be honest – how good are you at accepting “constructive” criticism?  The maturity and self-confidence to be able to do that may be light years beyond my abilities right now.  Should you never correct me?  Of course not.  But do it kindly so that I actually hear you.  Speak in low tones and lower your body as well, so that you are communicating on my level rather than towering over me.

Please!  Never, ever try to impose discipline or correction when I am angry, distraught, over-stimulated, shut down, anxious, or otherwise emotionally unable to interact with you.  Help me understand the inappropriate behavior in a supportive, problem-solving way rather than punishing or scolding me.  Help me pin down the feelings that triggered the behavior.

Practice or role-play.  Show me a better way to handle the situation next time.  A storyboard, photo essay, or social story helps.  Expect to role play lots over time.  There are no one-time fixes.  And when I do get it right “next time,” tell me right away.  It helps me if you yourself are modeling proper behavior fore responding to criticism.

My Response: I don't think that's autism-specific. Some of this is specific to kids.  Also, you need to tell me exactly what it is that I did wrong. You need to do this telling me when I am capable of interacting with you. While I am melting down is not the time for much of anything besides possibly helping me end the meltdown faster.

10. Offer real choices – and only real choices
Don’t offer me a choice or ask a “do you want …?” question unless you are willing to accept no for an answer.  “No” may be my honest answer to “Do you want to read out loud now?” or “Would you like to share paints with William?”  It’s hard for me to trust you when choices are not really choices at all.
You take for granted the amazing number of choices you have on a daily basis that provide you with control over your life.  For me, choices are much more limited, which is why it can be harder to feel confident about myself.  Providing me with frequent choices helps me become more engaged.  I also need to understand that there will be times when you can’t give me choices.  Just explain it to me; “I give you lots of choices but this time it needs to be an adult choice.”

My Response: As an autistic adult who lives at university, my choices are just as many as yours, and you should be aware that I am accustomed to making my own choices. If you start trying to make my choices for me because of the fact that I am autistic, I will not deal with you. Until an apology for doing so is received, I will continue to refuse to deal with you. It's called respect. Use it. For autistic kids, give just as many choices as you would give to a kid who was not autistic. But yes, the way you phrase things (don't offer it as a choice or ask a do you want if you aren't offering it) is totally true.

The last word: believe.  Believe that you can make a difference for me.  It requires accommodation and adaptation, but autism is an open-ended disability.  There are no inherent limits on achievement.  Encourage me to be everything I can be so that I can stay the course long after our time together.

My Response: It's only necessarily a disability because of our societal ideas of what ability is. Using alternative communication devices isn't disabling unless society says it is. Stimming isn't unacceptable unless society says it is. Maybe society shouldn't say either of those things. Maybe some of us mostly just needs acceptance of the fact that there is more than one way to be able. (Doing that does require accommodation and adaptation, and we do still need supports. We do still want to be functional. I just don't think that things like being table-ready are the most important skills to learn.)

Sunday, April 22, 2012

This is awesome, and just wow.

http://memegenerator.net/Aspie-Alligator (listens to song 60 times in a row.)

Because some people write problematic things.

Trigger Warning: Swearing (in the small bold text ONLY)

Another day, another round of problematic things, eh? A friend of mine, also on the autism spectrum, wrote this note as a status

Dear the majority of non autistic people who post in the 'autism' tag,
I sincerely want to punch most of you in the face. Seriously, you are the worst.
Please stop comparing autism to AIDS, cancer, or saying that it's caused by vaccines and sugar substitutes. Stop telling us how heartbreaking it is to watch your autistic sibling do something the way they want to do it. And for FUCK'S SAKE stop telling us how badly we need a cure.
Love,
Elijah
 (Said friend did give permission, and has his own blog at http://consulting-ashaman.tumblr.com/)
I would never have said those words myself for a few reasons:
1) I don't swear.
2) I don't threaten violence outside of LARPing/fencing type situations or with friends who I know won't read it as a threat.
3) I don't think I could have signed that with ``Love." I'm too pissed.
But it makes a sufficiently good point, and as long as I am doing so with CRTL-C and CTRL-V instead of having to actually say or type those words, I can put it out there. It needs saying, and I am tired of being diplomatic. I am tired of watching people comment on other blog posts making arguments from tone. (An argument from tone is when you talk about how rudely something was said and completely ignoring the points that were made, even when if this were happening to you, there is NO WAY you would have the patience to be polite. I usually will be polite, but if you are hurting me right now and you didn't stop immediately when I was polite, I'm done being polite.)
 I also did briefly stop by the autism awareness fundraiser at my college yesterday, and I can't decide if reality is better or worse than what I saw. Most of the people involved didn't have an incorrect picture of what autism could look like because they had no clue... and admitted as much. At least they didn't pretend they knew things they didn't know or spread the vaccine nonsense, right? But there wasn't any real awareness, either. It's sad. (I did look up the autism project. They were missing a few key things, like resources for AUTISICS as opposed to just parents and professionals, but what they were saying seemed fairly close to reality. They included Aspergers in what autism can look like and made it clear that autistic people can accomplish things just fine, along with some actual good advice. ) So if they had actually given people the picture of autism that they use while raising money for awareness, I'd have been cool with it. Still better than Autism Speaks, where the picture they paint is plain bad. But also still not good.

Friday, April 20, 2012

Because I'm totally not posting enough


So. I don't normally write this much (at least, I don't think I do,) but it's been a rough month in general and a rough week in the specific. Month: Uh, it's April. That's Autism Awareness month. Awareness is mostly fear-mongering, and it's hard not to internalize the stuff they say about autism. It's also hard not to yell at everyone who says problematic stuff about autism this month. One poster I saw on the train had a mother who said she was heartbroken when she found out her son was autistic, but that she has learned that autism doesn't affect his ability to be happy. And that's about the best I've seen. Seriously? Ability to be happy? And you're the one telling us? How about HE tells us he's happy? And why were you heartbroken? When you go to have a child, there is no rule that says your child will be ``normal for now." And autism, in and of itself, is not heartbreaking. Improper supports/therapies leading to never being able to properly communicate with your child is heartbreaking. Discrimination that leads to abuse is heartbreaking. A non-speaking autistic with whatever kind of alternative communication device works for him or her, living with the proper supports, and not being discriminated against for autism-related issues is fully capable of living a full life. This life is not a tragedy. A tragedy would be one of the many cases of a caretaker killing said autistic and calling it mercy. So that's my reaction to one of the better ones. Rough month, much?
As for the rough week, it's mostly the ``Social Security lost my passport and I leave for India in less than a month" problem. When I'm expecting there not to be a routine, I'm usually OK with the lack of routine. But when I have a routine, and then my routine changes, and while I'm still getting used to the new routine, all kinds of chaos breaks out causing the entire routine to be thrown out the window, it doesn't go well. I like routines. I like STAYING with my routine. I don't like losing the time I should have been working on nanotech research with quantum dots and lipid bilayers to the legwork involved in figuring out what happened to my passport and then replacing it. My entire break in the day Monday was lost to going to the social security administration, where my mother kept trying to do the speaking for me and I kept trying to get her to STOP. They told me on Thursday that they had my passport in their lost and found, so I went to pick it up. I get there, and they don't have it. Apparently they put it back in the mail Friday even though I didn't get it the first time because it was UNDELIVERABLE. Brilliant, guys. It couldn't be delivered, so lets send it again, right? And lets send it again when we know she's coming to pick it up! So we went to the post office to let them know it was coming, and my mom wouldn't shut up yet again. I swear, I am never letting her help me get anything ever again. She does all the talking for me no matter how many times I tell her I can speak for myself. And it's not even because I'm autistic! I know that because she doesn't believe I'm actually autistic. But that's not the point. It drove me nuts, and I didn't even get my passport back. I should have it by next Thursday though, so all will be well, eventually. And I'm doing nano research at URI all summer. So it gets better. I'm just insane specifically NOW.

Another Poem

Trigger Warning: Murder, Euthanasia, Ableism, failure to understand that euthanasia is a subset of murder

 Have another poem-ish thing. This one came after the murder of George Hodgins and my participation in a panel about euthanasia. (Read participation as crashing it with a bunch of ASAN folks and trying to help people see that killing someone who has not told you they wish to die, even if you believe it to be a merciful act and call it euthanasia, is still murder.)

You.
You want to cure what is not broken.
You want to end what you can not cure.
You say I have no ``quality of life."
You compare killing me to putting down a dog.
You choose when I can not speak.
You think cognition and communication are the same.
You think the wheelchair bound should be killed.
You even have the guts to think that it would be mercy.
You forgot something important.
You forgot us.

Thursday, April 19, 2012

Autism Awareness Poster


Today, I saw a poster on campus. I see lots of posters on campus, every day, in fact. Having three or more classes every day means that I do go into buildings where posters are. Normally, it's cool. But this is April. Autism Awareness month, and also Autism Acceptance month. I'm more in favor of the Acceptance month, but the organizations that have money to burn, such as Autism Speaks? They like awareness. (Over time, you will find that I don't like Autism Speaks. Specifically, I don't like the way they are run. I haven't got issues with individual members on the level of parents who participate, at least, not on the pure fact that they participate. I wish these parents gave their money elsewhere, but it's not as if parents get told about groups like ASAN when their kids are diagnosed with Autism.)
And that brings me to my problem. The poster on campus was for a fundraiser for Autims Awareness month. It had the blue puzzle piece that screams ``AUTISM SPEAKS" at me. The event is this Saturday. Do I go and hope to educate people, knowing full well that if I do, I will probably spend much of Sunday curled up in a ball, shaking? Or do I put my own short term mental and emotional health first? I say short term because long term, the best thing I can do is live in a world where I can admit to being autistic and it will be OK. That takes educating people. I also say short term because I know there is a genetic component to autism, and there are autistics in both my family and my fiance's family. There is a very good chance that I will be fighting this battle on the side of my children some day. I'd like it to be easier then. Long term, the answer is clearly to go. But I've spent most of the weekend curled up in a ball shaking every weekend for the last month. But I have homework, which I would like to get done without pulling another all nighter. But I have what is likely the only Ultimate Disc tournament I will get to play in until October on Sunday, and I haven't gotten to play in a tournament in almost a year. But I have exams coming up. So I don't know.
Self advocacy, like any kind of activism, is done by human beings. (I suppose it is also done by any sentient beings that interact with each other too, but I'm sticking to humans for now.) I have to remember that. I have to remember that I need to have time to be human. But I also need to make sure that I can admit to being who I am without fear that I will then be seen as not-quite-human. Self advocates have the most to lose. Sure, self advocates who can't ``pass" the same way I can and usually do have more to lose than I do. But I have more to lose than advocates who are not themselves autistic, for one simple reason. Their status as human beings is not in question. Mine is. And I still don't know.

I Hid

Trigger Warning: Discussions of abuse and ableism (as reasons to pass)

Today is a fairly heavy-duty post, but it's not something I wrote today. This is a poem, sort of. It's about being autistic in a world that sees autism as only meaning the non-speaking children in the corner and not wanting anyone else to know.
It's definitely meant to be read aloud.
Also, this is my submission to the Loud Hands Project. If this tells you who I am, don't go using my full last name, thanks.

I Hid


I knew.
I knew what I was, what I still am.
I say what because so many of you see, well, that, as a what, not a who.
So I hid.

I hid because I knew.
I knew what would happen if anyone found out.
I knew that if anyone who could diagnose me, who could label me, ever got near me, 
         the game would be up in a moment.
I knew what they did with kids like me. With the Autistic kids.
We didn't take hard classes. We didn't even take normal classes.
What we could do was ignored to make the time to get us the abuses we needed.
But it wasn't called abuse. If you're autistic, it's ``therapy.”
So I hid.

I passed.
Not for ``normal,” of course. I could never have done that.
But I could pass for merely weird as long as I avoided the people who thought they were helping.
If you're just weird, you can take whatever classes you want.
If you're just weird, no one bats an eye when you have two pairs of pliers in your bag.
If you're just weird, you can spend a month in another country.
All that's OK, as long as you're just weird, not Autistic.
So I hid.

I had ``quiet hands,” and no one even had to hold them down.
If no one knows you move like an Autistic, you don't, right?
I looked at people's foreheads.
No one notices you're not looking them in the eye if you look at their foreheads.
I made sure my teachers knew I was smart.
The top of the class can't be Autistic, right?
I was hiding.

But someone noticed anyways.
By then, I was in high school.
In high school, it's harder to make you do anything, unless you're already not quite human.
They have to convince your parents to force the issue if you don't want to be evaluated.
Who's going to convince parents who went through life with the picture of autism most of us still have?
The kid in the corner who doesn't talk or look you in the eye, who bangs his head on the wall?
He's autistic.
The girl who's been doing her best to pass for merely weird, who flaps her hands when excited?
Not autistic.
Hiding was working. Not going was working.
I kept hiding.

Because I knew.
I knew that even in high school, that label would give them too much power.
I knew that the Autistic needed to be made normal in ways the merely weird could escape.
I knew that we were somehow broken and needed fixing.
I didn't want to be fixed.
I kept hiding.

The problem is, hiding yourself is hard.
Maybe some people can do it forever.
I can't.
All the problems are still there, and I'm terrified.
I'm terrified because I still know.
I know I'll be an object of pity.
I know that some people will still see me as less human.
I know those same people will see me as broken.
I know they'll try to break the person I am in order to fix the person I never was.
I know they'll think I'm trapped in the shell of Autism, not the shell of normalcy they want to force me into.
I know I'll be ``too Autistic to understand,” except when I'm ``not Autistic enough.”
I know I'll be ignored.
But I also know that nothing will change unless we make it change, and those same people won't.
So I know that I have to do it.
I guess I can't hide anymore.

Wednesday, April 18, 2012

Passport

Today, I got a call from the supervisor at the social security office. I'd been there Monday because I called them asking about the passport I sent them to get a new card. (I got the card fine, but a month later, no passport.) The person I talked to said it was in the lost and found, so my mom helped me get there. (No license yet because I keep winding up in China over the summer and school is busy.) I got there, and the passport had apparently been sent back out again on Thursday or Friday. I'm not sure why they tried again, since the problem was that the passport had been returned as undeliverable and I told them I would come pick it up, but whatever. It's bureaucracy. Anyways, I get to the following Wednesday, and no sign of the passport. The supervisor I talked to while I was at the office called to check if I'd gotten the passport yet because whatever I might have to say about bureaucracy, she is doing her best to be helpful. Since I don't have it back and it was the government that lost it, she tells me that if I bring a receipt for the passport fees, the social security office will reimburse me for the replacement passport and for expediting it, since I leave for India on May 15. I'm glad they are-paying for India is going to be interesting enough without the $200+ for getting a new passport and having it expedited. But that means I need to go apply again. So I'm going to Boston this Friday for a 9am appointment to apply for a new passport the super-fast way. Yay madness ensuing? I'll probably bring my math homework with me for one of the three math classes I'm taking, and maybe some grading work. It's not like I really have time to go to Boston, but I do need the passport.

Hi all

So, a first post! Here is my introduction:
I am in my second year in school, studying mechanical engineering, mathematics, and Chinese. I am also autistic. I am mostly verbal, but I am not during one of the ways I can melt down. (There are a few. Some loud, some silent, none violent except in self-defense. No one is going to get hurt unless someone decides that stopping me from flapping/rocking/shaking/pacing/insert other non-dangerous stim is a good idea during a meltdown. Then I will flail.) I do not assume that my opinions will hold for all autistics. No one autistic can speak for all of us, and I will only claim to speak for myself. That said, I have strong opinions on what should and should not be done. (Stopping someone from a non-dangerous, safe for work stim is on my ``good to know how if and only if the person has expressed interest in passing for not autistic at times" list, for example." These opinions are very situation based. I will probably piss you off at some point. Go ahead and comment, but nicely. If your comment contains an ad hominem attack (you are ____ as opposed to your idea is wrong because_____) I WILL DO SOMETHING. The something might be deleting the sentence with the attack if there is a way to do that. It might be deleting the entire comment. It might be replacing the attack with ``ad hominem attack removed" and leaving the rest of the post alone. But it will not stand. If you use the word ``retarded", your comment is gone. Argument from tone is bad. Ad hominem attacks are bad. Logical fallacies are allowed, but will probably be pointed out. Scientific inaccuracy will be pointed out, possibly with papers cited. (I have two STEM majors. I do rigor.) Sarcasm should probably have <begin sarcasm> and <end sarcasm> type tags. I for one have trouble picking up on it, even in person.
That's not to say that autism stuff is all that will be there. Like all self-advocates (ASAN is awesome, by the way,) I am a human being. A really, really busy one, in my case. Three majors (taking seven classes this semester), assisting other online classes, grading papers, playing two sports, and doing nanotech research apparently has that effect. So that is my story. You'll be hearing more. You'll probably also see some of the stuff I've written before. And you might even see the geometric design stuff I do. Because three majors is totally not enough to be doing!