You have to know which roads lead to death in order to know the roads that lead to life.--Cassie
1. My Story:
I didn't have a whole lot of signs that I had some form of autism before one very specific experience in Xena fandom, but the signs were there. Here's what I can remember:
* Growing up, I was the stereotypical gifted-kid-without-a-lot-of-friends. The reasons my parents gave me for this was that I intimidated people and that I seemed stuck-up. That wasn't coming out of a vacuum. I would parrot the things that other people said about my intelligence (not ever having been taught the nuance to the rule that there are things that other people can say about you that you can't say about yourself).
* Growing up, the deeper reason that I suspect some form of autism is that there was this very distinct barrier between my external world and my internal world, and I was not even aware that a way across existed. I wondered what I should say at parties, to teachers, even to close friends, and chances are I would say nothing at all, since by the time I'd thought of something I thought was appropriate and ran it through all the layers of mental checks, the opportunity to say it would have already passed. I had a very rich and vivid fantasy life, and I wasn't aware it was possible to share that with anyone else.
* I don't naturally think in language. In some of the autism research I've read thus far, the authors make distinctions between thinking in words or thinking in pictures. But I don't naturally think in pictures either. And what do I think in? Well, do try to imagine the difficulty of conveying the experience of not-thinking-in-language using language... :P
This isn't a precise description, but it'll have to do. Picture a room filled with soap bubbles. Take a closer look at one of those bubbles. It holds one complete experience:
-- Point-in-time. The bubble could hold only a moment in time or an event taking a set amount of time, but either way, there was something that did happen before and there is something that will happen after.
-- Visual imagery, heavily dependent on color. The colors themselves have meaning, but that meaning can't be expressed in words, only experienced. With this comes touch and sensation imagery -- something can be soft or sharp, for example, or change between the two during the course of the moment.
-- Sound, heavily dependent on musical/poetic connection. There could be words as part of this, but the words don't mean the same thing as they do using ordinary language; each word means what it could within a complex poem, and most mean more than one thing.
-- Connection. Let's see ... the best example of this is a time when I was discussing song lyrics with a friend of mine. "Tell me it's over, I don't want you to hurt" could either mean, "tell me that the trauma is over and comfort me that way" or "tell me that our friendship is over because I'm not good for you, I'd rather sacrifice my own needs for your sake" -- and within the bubble, the phrase means both.
Okay. With me so far? Now back up a little so you have a room filled with those soap bubbles. Now imagine them magnetically connected to each other -- maybe "soap bubble" isn't the best description anymore; maybe picture one of those KNex sculptures. The bubbles can form a single linear chain, or they can branch out into complicated structures. They can magnetically attract one another (as when a song calls up a memory). They don't always (actually very rarely) connect in chronological order. More bubbles can be built, either deliberately or accidentally. Very rarely, one can be popped (although I've never managed this feat). Just like copper shavings with a magnet, the bubbles can be shaped into patterns due to external influences, or due to my own will. I always have some control and I never have absolute control, either over the patterns or over the existence and content of individual bubbles.
There was one particular experience I had in my very early twenties (like, 19 through 21), which taught me that there was a bridge between external and internal and I had no choice but to build and cross it, and ever since then I've probably done more of my daytime thinking in language than without it. It seems to me that it's like learning a second language, and then living in a country where that second language is spoken exclusively, so you almost forget the first one. I habitually think in language during the day, when I'm attempting to communicate with anyone else, and when I'm writing. But when I'm dreaming, when my emotions are especially turbulent, or when I'm attempting to solve a complex problem and I can't do it the ordinary way, then I'll revert to my natural way of thinking. I've gotten in trouble with this with at least one boss -- it's not that I won't describe my thought process from A to B, it's because I can't. And not because I'm handicapped, either; because there are no words!
* One of my friends mentioned once that she had a friend whose child with autism tended to shut his eyes when he was talking, and that reminded her of me. So she brought it up with me, I said that would explain a lot, and then our lives went on and the subject was dropped.
That's all ... not a whole heck of a lot of prior indications, if you ask me.
Late in my time in Xena fandom, after I came back from Alaska, I took an Accounting internship. It was the first job I'd had using my MBA in Accounting, and it was for a company that I'd spent years working for in a temporary administrative capacity. I was good friends with all the people I worked with (actually still am), and my two overall bosses were about the nicest, fairest, most intelligent people I could ever hope to meet. However, I was miserable. I couldn't understand why I couldn't phrase my questions in a form that my immediate supervisor could understand. I learned later that my immediate supervisor had an ego the size of Alaska and had already determined that I was a kid who hadn't had any school and didn't know what she was doing (I'd like to reference that every time someone tells me I'll be glad to look younger than I am "when I'm older"). But I didn't know that at the time, and even if I had, that wasn't the whole of the problem. He made me listen to countless lectures on things I already knew. Every time I asked a question, I'd get the same lecture, and then I'd be back at my desk with a problem that I still didn't know how to solve. When I finally figured out that the more stressed and tired I am and the more complicated the answer I'm attempting to come up with, the more likely I am to revert to my natural thinking patterns and use words that don't make sense, I attempted to explain that to my immediate supervisor. His only response was that all he had to judge me on was my words (in other words, I guess I'd have to try harder to speak his language).
I sent a couple of heartbroken emails to Rina about all this. I think most of all, I was worried that if I couldn't make it work at this company (where I had friends and where my immediate bosses thought the world of me) -- then I'd never be happy/successful/feel like I was competent at work anywhere. Rina said that I sounded like a textbook case of Asperger's and forwarded me a couple of links to autism research societies near where I live. I contacted one of them and volunteered to be part of one of their studies, since it would mean that I'd be unofficially tested for free. I did the tests, and the diagnosis came back: I do indeed have Asperger's.
As far as the rest of Xena fandom, reactions were very mixed. Genkakette jumped happily on the bandwagon and started doing research of her own -- I actually think she's done more research on Asperger's than I have. Leknaat was suspicious, wondering how I could possibly have Asperger's since I'm as extroverted as I am. Sansuke said the whole idea was ridiculous and that she had a coworker who had Asperger's and I was nothing like him. (And the rest of that story is dirty laundry that I am determined not to air here, so we shall stop there!) Wakaba took it at face value that I have Asperger's, but then started attributing some of the made-up bad things I was supposedly doing in our friendship to that, which I took offense to (and again, the rest of that story is dirty laundry). It's old news to the Xena fandom friends I have left. I think I should be grateful for that. I found out the hard way, when I told my ex-boyfriend that I had Asperger's, that a great deal of people think of people with Asperger's as deficient, and no one from Xena fandom has treated me any differently at all before and after the diagnosis, nor avoided becoming my friend because of it.
Do I actually have Asperger's at all? You know, I'm still undecided on that one. I say that I have Asperger's, and I include it on the standard list-of-things-to-know-about-me (although below "Christian" and "Fangirl"). There are parts that fit and parts that don't. Rina says that's normal -- she says that autism in general and Asperger's in particular encompasses so many different traits that anyone with the diagnosis has to pick and choose which fit and which don't. But I've found that the word "Asperger's" causes people to form so many blatant misconceptions about me that sometimes I wonder if that means I shouldn't use it, and sometimes I wonder if that means that I don't have it after all. I don't know.
All right, the rules of survival: 1. If you can run, run. 2. If you can't run, surrender, and then run. 3. If you're outnumbered, let them fight each other while you run. 4. [Gabrielle interrupts] I know, more running, right? [Xena continues] No, four is when you talk your way out of it, and I know you can do that.--Xena: Warrior Princess
2. Rules
The myth: people with Asperger's (or at least me) are obsessive rule-followers in the same way that people with obsessive-compulsive disorder are rule-followers.
Once someone thought that I was so obsessed with getting my stuff back from my parents that I didn't care about their thoughts or feelings on the subject.
Well, I doubt my parents will ever find this (at least ... well ... I'm going to do my very best to make sure they don't). But just in case, and due to my promise not to air dirty laundry, I'm going to say very little about the situation itself. When I went from high school to college, my immediate family moved from one town in the state we were living in to another which was about three hours away. Thus, when I was packing, I had a smaller pile of boxes to go to my college dorm, and a bigger pile to be stored in the new house until I graduated. I thought I'd see most of that stuff again in a few years. I never saw most of it again. When my mother warned me that she was planning to sell the house to move into a smaller apartment, I initially wanted to fly out for a weekend and help sort what to mail to me and what to put in the garage sale myself, but my mother interrupted me in the middle of even making that suggestion, and there were some very horrible miscommunications going on during that time, and what finally happened was I sent my mother a very brief list of stuff to mail to me, she added to it (some additions which caused some truly horrific flashbacks), and put the rest in the yard sale. I've had at least one friend tell me that I was brave about the whole situation -- that she wouldn't be able to say "just get rid of it" about her childhood treasures. But no matter what happened: nothing whatsoever to do with Asperger's.
I do find it very useful to see my life in terms of rules. And here's the reason:
When I was a child, I was forever being criticized for "not paying attention." I've heard in recent years that autism and attention deficit disorder or attention deficit hyperactivity disorder go together. I think I can understand that. I'm not precisely sure that the attention "deficit" comes from the same place in people with autism and people without. Or at least for me specifically.
I've described Asperger's using the image that it's life without wearing sunglasses. It's not that I'm not paying attention to the thing that you want me to, it's that left unchecked, my brain will pay attention to everything. Therefore I need to know in advance what I should focus on and what I shouldn't.
Want a very specific example? I have very poor spatial processing. I don't know if this has anything to do with Asperger's. It may not. I don't have the kind of built-in compass that tells me where I am -- and more importantly, what direction I'm facing -- in response to anything else in the room or anywhere else I've been. If I walk into a store (so the visual cues from the outside are gone), then walk back out of the store, I will not be automatically able to tell you which direction I came from. If I walk from A to B to C, I will not be automatically able to tell you where A and C are in relationship to each other. My brain does not do this. It will never do this. I don't think I'm as unique in that as I once thought. How I cope is that I memorize. If I know that I will need to be able to retrace a given path, then I make mental notes of landmarks as I pass them. I can keep a very long mental map if necessary, and I know when the time comes when I have reached my limit and I need to start writing stuff down. The important thing is that this skill kicks in when I tell it to, but not when I don't. If you walk someplace with me while talking and you don't previously indicate to me that I'll be in the lead on the way back, then suddenly ask me where we are, I will not be able to answer the question.
My method of focus is as much an advantage as a disadvantage because it's under my conscious control. I suspect that my threshold of things to pay attention to at the same time is lower than most people's. I can only usually manage one or two that have meaning (examples: a conversation, a podcast, music that I don't know well, TV/video), and two or three that don't have meaning (music that I do know well, rote data entry work, sewing or crocheting, driving a route that I know extremely well). Most people I've met can do more things at the same time. But, most people I've met are also more easily distracted than I am. It's a trade-off. One of the first things I need to do in any new office I work in is to convince the entire staff not to laugh at me for the way that they can come up behind me and yell something and if they haven't already indicated to me that they'll be talking with me, I won't hear it.
I had at least one person say that he wasn't offended that I didn't acknowledge him until he tapped me on my shoulder because he "understood my handicap." That just gave me a reason to be mad at him. The way that my methods of focus work gives me an advantage in some situations and a disadvantage in others, just like everyone else's. I don't like being laughed at for it.
The rules tell me what to focus on. They also tell me what to expect. Let's do a couple more myths here.
Myth: My routine is so important to me that I become upset and frightened every time it changes.
Fact: I have less of a routine than any other person in her 30s that I know. As I type this, I'm house-sitting and cat-sitting for some friends of mine. I will sleep tonight in a bed that's not my own and get up far earlier on a Saturday than I ever do at home in order to feed cats. I change my own routine on the drop of a hat. I'm still debating whether to go to bed early or to stay up watching Suikoden videos and sewing. I haven't decided yet whether, since I'm in a safe neighborhood and the evening is cool, whether I want to take a walk and if I've eaten enough today to be able to afford the exercise. Since I'm the single one in my group of friends, I'm generally the one asked to go over to other people's houses rather than having them come to me. When I was at the height of my Xena fandom involvement, I traveled all over this country and outside of it in order to visit people, and I'd conform to whatever routine my friends had for however long I was there. I don't even typically get jetlagged!
There is a truth behind this, though. The fact part of it is that I need to know what to expect to happen to me and what to expect to be expected of me, and that need goes deeper than any I've ever seen in anyone else. It's normal for groups of friends to do about-faces and change their plans. Actually, in my experience, that happens way more often in groups of people who have Asperger's than in mixed groups. One change, I can usually handle in stride. Two changes (especially changes that are close together or that have a huge impact on me), I'll feel like the world is shifting under me. I actively seek out spoilers -- not just to be warned when one of my shows is going to throw a knife into my heart, but to be able to anticipate and fully experience the delightful parts. Or to understand elements that I otherwise wouldn't. I always enjoy something more on second reading than on first.
As much as I can understand it, I think this has to do with the way that my thoughts don't necessarily or usually connect to each other in chronological order. What happened before and what will happen after are equally important to each individual bubble. And so if the "what will happen" part is either unknown from the beginning or if it changes dramatically and unexpectedly, it creates a gaping hole in my entire thought process. It's like pulling a block out of a Jenga tower. The whole tower might be fine, or it might collapse (and whether or not the tower collapses has as much to do with how violently and quickly the piece was pulled out as it has to do with which piece it was). LOL, I just thought of something. By this logic, I would fear good surprises as much as bad ones. But it doesn't quite work that way. If I believe that I'm going out to play board games with some friends and then I find out it's a surprise party, that's one change. An old expectation was replaced with a new one (not replaced with nothing). The bubbles might need to shift around a little, but they do that all the time anyway -- it's part of the normal process. Versus -- well, actually, here's an example.
I showed up at a social group thinking it was going to be Board Game Night. While I didn't bring a game, I did bring some appropriate snacks for the occasion. I like board games, and I don't particularly care (or remember) who wins, so there's no danger of it all going south due to hurt feelings (at least on my part). When I got in the door, I discovered it was pizza-and-movie night. Okay, that's change number one. It creates a couple of interesting vacuums. Vacuum number one: I can't eat pizza unless people are willing to order from a place that makes gluten free crust and pay more than I'm willing to pay for individual pizzas. I'd eaten a light dinner before coming, but I was expecting munchies that I could eat. It's not replacing one expectation with another expectation, it's replacing an expectation with nothing -- with a big gaping "I don't know." Vacuum number two: the specific movie they chose was "I am Legend," which I know is too scary for me. I have a specific kind of bad reaction to zombies, and unless I'm extremely well prepared and grounded, a zombie movie will put some ick into the bubbles in my head which I can never get out. Once again, I could actually probably have handled the movie if I'd (1) known for at least 24 hours that I'd be watching it, (2) gone online and gotten all the spoilers I could, including precisely what moments to shut my eyes, and (3) brought my teddy bear. But having it sprung on me, there was no way. So I left. But that created another vacuum: I thought that I would be hanging out with people that evening, and instead I was left to my own devices. Since I didn't know what to do with myself (I never do when I have no time to plan) -- there was just nothing in the space where something was.
Besides letting me know what to expect, rules let me know what's expected of me. We all use them. Maybe I'm more conscious and deliberate about it than most of the people I know, and maybe I'm less willing to break rules since I can't bear letting down anyone' expectations of me ... but that's not different in kind, just in degree. Everyone needs rules and boundaries.
We shall not cease from exploration, and the end of all our exploring will be to arrive where we started and know the place for the first time.--T.S. Eliot, "Little Gidding."
3. Special Interests
The thing that put it in my head to write this page in the first place was when, while looking for a friend's thesis, I stumbled across an unrelated article in my Google search. (I searched "Autism and Religion," since that is the name of my friend's website.) The article was written by a woman with one son who had autism and one who didn't. She said that she'd introduced her son with autism to Christianity by connecting Jesus with her son's special interest: babies. Since Jesus was once a baby, therefore the stories could be seen in that light. She concluded the article with that her nonautistic son was especially excited about Easter while her autistic son didn't care since that had nothing to do with babies, and that it might be nice if he could care about someone else's special interest once in awhile, and they were working on that.
I really couldn't fault that mom's reasoning. In a way, she's hoping her son will accomplish a normal part of growing up and learning to be unselfish. When you're a child, you assume that if you don't see depth and beauty and connections in something, it's because they're not there to see. When you're an adult, you understand that there are things in the world that you're not equipped to perceive. When you're a child, you think that someday you'll understand everything; when you're an adult, you realize that's impossible and you wouldn't have it any other way because the world would be way too small if you were capable of understanding it all. When you're a child, you don't understand why it's valuable to see through another's eyes. When you're an adult, you understand what a precious gift that kind of empathy is. It's even listed under the five love languages: Quality Time.
Thankfully, I don't think I've been criticized (at least recently) of having one particular lens and making the world be all about that. I have a lot of sympathy for people who do face that all the time. The thing is ... this isn't particularly an autistic thing. Everyone has different lenses that they use to interpret the world. I'm not sure the world can be perceived without those frameworks. Those of us in Xena Fandom had a pre-established common lens that we used to see a great deal of our lives. I had a friend who speculated that fandom had a higher percentage of autistic people than the general population -- which doesn't sound to me to be a bad speculation -- but certainly not all people involved in Xena fandom had autism.
I can anticipate the argument I'm most likely to get right now. You can be in a fandom for something without necessarily making that thing such a "special interest" that you connect everything else in your life to that one thing. That's true in the casual sense. However, for the past couple of years, I've attempted to be involved in the fandom for a different show, "Robin Hood BBC," which a lot of my Xena fan friends migrated to. I have never experienced having Robin Hood be a lens for me to understand my world the way I did with Xena. And, unfortunately, Robin Hood posts are nowhere near as effortless or fun for me to write as similar Xena posts used to be. I find that without the special interest lens feeling, I can't maintain the energy to stay in Robin Hood fandom for as long. And I suspect that most of the long-time board members were the same way.
I feel like I'm meandering a little bit -- more describing what special interests are and how they work than separating fact from fiction. I'm doing that because this is the part of Asperger's that I least understand. For me, having something be a lens which I can use to understand the world is different than just liking something (or even really, obsessively liking something). And I can't think at all without at least one lens. My vast imaginary realms fulfilled that purpose when I was a child, and now that I'm an adult, more accessible things have taken their place. There's one sense where special interests are completely out of our conscious control. You can't decide whether something makes sense to you or not. There's another sense where understanding how to communicate about special interests falls into the realm of increasing maturity -- learning how to communicate your own interests in a form that's accessible and not obnoxious to those who do not share them, and learning how to understand others' lenses even if you don't naturally share them, and probably especially if you can't learn to share them (since you can share a lot more than you think if you try, but it's the ones where you just Don't Understand that require the most work).
And even though I switched to second-person for a bit there, I'm still primarily talking about myself. I do think it's harder for those of us with some form of autism. None of us can control the lenses that make sense from the ones that don't, but people with autism tend to have a smaller repertoire, and a more difficult time comprehending anything outside of it. I think a lot of the time we can be seen as correspondingly more immature and self-absorbed when it's really ... it's harder for us. That's not an excuse for not trying or not mastering it eventually, but I think there's a place for acknowledging and congratulating the extra effort. As Andrew Peterson puts it, "there are mountains on the ocean floor.... no one ever sees, no one ever knows."
Just as an aside, I've met several people whose main framework for viewing the world is video games. Considering that's probably my secondary (with music being my primary) -- I want to marry a guy like that someday. Just saying. :D
Please, don't let that light that shines in her face go out. I couldn't stand the darkness that would follow.--Xena: Warrior Princess
(The above is my favorite Xena quote.)
4. Asperger's, Social Skills, and Nonverbal Communication
I had a debate on this subject with a friend of mine which finally he said we'd "agree to disagree" and I had to change the subject because I was mad enough that I was afraid I'd say something I'd regret. The subject was simply, is it possible to communicate via instant messenger as effectively as it is face to face?
My answer is yes it is, and my corollary answer is that online friendships aren't any different from face to face friendships. The lines blur anyway. I mean, Genkakette lives about an hour and a half from me (usually two hours where I'm concerned, I'm not a very fast driver). We managed to have monthly "sleepovers," (her term) -- I'd arrive on a Friday evening, we'd talk for a couple of hours, break for dinner whenever I got hungry, talk some more, watch X-Files or The L-Word until we passed out, sleep in, and then do more surface type things as opposed to the deep conversations of the day before -- go out to Pei Wei for lunch (which has an awesome gluten free menu), play around with my karaoke machine, have screaming rounds of Mariokart with the kids, go to Bookman's or Walmart, etc. I treasured those times, and it hurts tremendously to know there won't be any more of them. But is that what made us friends? It was once a month when we could manage it (when someone's schedule didn't get in the way, when I could afford the gas for the trip). Our almost-daily communication happened over email and board posts, and once in awhile over instant messenger. Or someone like Wakaba, who I might have met online, but who preferred to talk long hours on the phone and then spend every weekend together, who I really barely communicated with online at all besides to make plans? Most of my communication with her happened over the phone, where you don't get visual nonverbal signals. Or someone like Leknaat, who I saw almost every year at conventions, but who didn't really ... talk ... all that much face to face (our interaction was usually composed of watching something and then discussing it -- first Xena, and then Robin Hood in the later years). We spoke the most over instant messenger. Hers was the type of friendship where I'd think "okay, we've gone far enough with this, I'll tell her the rest online" -- and yet it was no less a real friendship, it was just that both of us were the freest to be ourselves when using our fingers and not our voices. Or someone like Rina, who I barely saw any more often than that (hers was the farthest in-the-US trip that I ever made, and I couldn't make it all that often) -- yet who would have face to face conversations that made all the email and online interaction pale in comparison?
I found that arbitrary types of definitions just vanish in fandom. If you define an "online friend" as someone I haven't ever met face to face, I didn't have all that many of those -- and yet there are people I've never met face to face that I feel far closer to than people who came and went from my life in my fandom journey. If you define an "online friend" as someone with whom my primary interaction is not face to face, then you have to define "primary interaction" -- is that in amount of time, or types of things discussed, or comfort level?
I went to Confession once to confess something that had happened with one of my Xena fandom friends. The priest said that it was likely the miscommunication happened because our primary method of communication was email, and that I should ask to telephone her. I brought this up to a mutual friend, who said that the person involved would probably see a request for her phone number as being overintrusive, and ... well, I can't remember what she said to do instead; I vaguely remember that it didn't work (but that falls into the dirty laundry category). My point in bringing this up was just this: it really bothers me that people assume that when miscommunications happen over email, it's because of the medium. That particular miscommunication didn't have anything to do with the medium.
Here are some of the types of nonverbal communication that are possible in written media:
* Emoticons. People dismiss these because they're always on purpose (not unconscious the way ordinary facial expressions are), and because they're never complete. But actually, I think that the emotion you wish you were feeling or that you wish to communicate is just as important as the emotions you actually feel and communicate. I have a particular issue with this one because I'm tired of people telling me how confusing my own nonverbal signals are. I'll naturally close my eyes when I'm trying to translate a difficult subject, or wrap my arms around myself when I'm cold, or move my head and hands randomly. None of it means anything, and I'm tired of people assuming it has to. Versus, I can express what's honestly going through my heart with a few characters and abbreviations, and those add way more color to the conversation than people realize.
* Silence. Sometimes that can mean "go on," and other times it can mean "you lost me."
* The same "when I do X, I want you to understand Y" signals that we have about each other in day to day life. You develop a shorthand online the same way you do in person. Fandom in particular has a million expressions that mean unique things to people within the fandom. (Want an example? All you have to say is "Xena's Dark Side" and someone in the fandom will hear connotations of grief, guilt, and controlled danger -- a sharp, quiet edge where you don't know if the day will be saved or you'll be driven off a cliff, gray shading to white shading into the unknown.)
* Implications. Once again, this is an area where I prefer online types of communication because it's so much easier to say "just come right out and say it, please" online than it is face to face.
I suppose I've been hedging around the question "which style of communication do I prefer?" The answer isn't simple (of course, nothing about me is). And, I have a reason for the hedging, which I'll also explain in a minute.
One afternoon, Lepanta expressed on the board how much she preferred instant messenger to face to face communication. She listed her reasons. They were good ones -- I mean, I wasn't sure I agreed with all of them, and in the end she and Eileen chose face to face over instant messenger. I just bring this up because there's no way Lepanta had autism. She just didn't have a lot of people in her day to day face to face life with whom she felt comfortable being honest, and it's a lot less risky to try that out over instant messenger, where it's harder for the other person to lie to you, and where you can break it off quickly and easily at the beginning if someone gets hurt so you don't get more hurt.
Given the choice, I prefer to begin friendships over instant messenger. I have a lot of weird, unexpected facial / hand / body gestures, and I really don't like people's first impressions of me to be of that. In addition, I still look about ten years younger than I really am, and as much as a zillion people like to tell me that's an advantage ... it's not. I want to look my age and have people take me seriously as an adult, and it really hurts that so many people just shrug off all those years being treated like a child when I had the responsibilities of an adult. Now that I at least look like an adult, that's not so much of an issue, but I still prefer for my friends to perceive me first as the age I am rather than as the age I look. And finally, even setting all that aside, there's something magical about the right kind of instant messenger conversation. I'll put something about this in the Xena fandom part of this blog one of these days -- what it felt like to get up and turn on my computer at two in the morning when I couldn't sleep because I was just so lonely, and to have Lepanta message me immediately and ask the perfect question. There are places in my own head where I can't go with the spoken word, only with writing, and the kind of back-and-forth writing which also has the added advantage of instant feedback, feeds that place in my heart. I can't imagine a time will ever come when I want to stop instant messaging my friends.
All that said, I generally prefer face to face interaction to online interaction, at least when that choice is available to me. There are a lot of types of communication that aren't available through online means. Once again, I'm making this distinction and I can be very sensitive about this. I don't think it's inherently inevitable to miscommunicate over email. I don't think understanding is any harder in any media -- chances are, the media is not the cause of whatever problems develop. But typing is slower than talking. Typing doesn't give you the opportunity to be in the same room with the other person -- to see and interact with the same things that the other person is seeing and interacting with. Typing doesn't give the option of touch. Actually, I think Genkakette said it best -- when all you have is online interaction, then all you really can do is talk. Even if it's the best, most satisfying kind of real talking, you can't go to the grocery store or the movies with the other person, or play a video game, or sit and read and not have to say a word.
Okay. Reason I'm so sensitive about this. I was once at a -- I guess sort of support group for people with Asperger's, which is fine as far as it goes. Viki texted me midway through the meeting. When the group took a break, I picked up my phone and texted Viki back, then kept it pretty close since I wasn't sure how much of a crisis was developing over on her end and if I'd need to step out and call her or something. When I caught the curious expressions of a couple of the people in the group, as a point of interest and nothing more, I said that Viki was one of my online friends, and most of my social group was pretty far away. The group leader said that making friends online was an expression of "aspie woundedness." I got so upset at that I walked out, and I got a nice condescending email from him later saying that he couldn't serve the group by ignoring a glaring problem like that.
The thing is -- Viki was one of the few who I met first face to face. I was at one end of the general admission row at a Xena convention and she was at the other end, and she said something about being nervous which I overheard, and I yelled, "you're at a con, just come hug us." But of course we didn't have a chance to talk about anything more than the most surface superficial things during the one day we were both at the con, with all the noise and commotion and stars everywhere and schedules and people tripping over each other. I believe we discussed Final Fantasy X and the fact that Kimahri almost never has smut written about him, but there's one livejournal community working to cover this gap. She's too far away to visit regularly, but over email over the next year, we swapped entire life stories, and by the time of the meeting I had become one of the first people she texted in a crisis. So the group leader's accusation that Viki's and my friendship was an expression of aspie woundedness was completely groundless.
Chances are, you've heard the "this person could be anyone" idea that people say about people you meet online. If this makes you want to throw something, this next bit is for you: yes, it is possible to completely lie about your own identity online. Yes, it is possible to prowl through Facebook looking for someone's schedule and use that information to be a predator (that's why it's important to be vague about what you post in public -- don't give out your specific location information or other important contact details, and don't use other people's first and/or last names unless they give you permission -- one rule that I didn't know when I first got online). But, that does not mean that any person you meet online is necessarily lying.
*sighs* My evidence for this is always that ... I really don't care how my friendships begin, they nearly always include at least some form of face to face contact, however brief, and I have yet to "meet" a person I didn't recognize. Even Pilika -- the only pictures I'd seen of her were several years old and long before the event in question, yet when I saw her coming down the line for the London convention, I recognized her instantly. I think the problem is that people base all their online expectations on people who have an agenda for misrepresenting their identities. People trolling chatrooms for a potential date, for example, have much more of an agenda for lying than people posting on a "Xena" board because they like the show. In all my time in Xena fandom, I knew one person who lied about her identity. Well, make that two; there was one person who posted fake pictures, got a date that way, then got caught and kicked off the board, and then there was one person who did the "fake her own death to get attention" bit and caused a rift in the board moderation. That's two ... in over five years and probably hundreds of people, and neither situation impacted me personally (although since I had two friends who were moderators, the second one did impact me through them)..
My advice is just, if you're trying to get a date, then use sites specifically designed for dating. Long-distance romantic relationships are really, really hard. Sometimes you don't have a choice if you fall in love with someone first and it is what it is (for that matter, if you have friends all over the world like I did, and happen to fall in love with one of them and it's reciprocated...well, it happens). But don't purposefully put yourself in that situation -- start out by meeting as many people as you can who are already in your location. And recognize that the potential that people who are looking for romantic interests may be lying is a lot higher even on dating sites, so use sites that are as well screened/moderated as possible, and don't give your heart away over instant messenger if the other person won't meet you for coffee. If you're looking for friendship / community / common interest ... long-distance friendships don't have the same built-in difficulties as long-distance romantic relationships. They can work. The Internet connects so many diverse people in diverse places, the pool is bigger, the risks are lower, why not take advantage of it? Just don't comb non-dating sites looking for dates -- don't go in random chatrooms or message people you know nothing about even if you're only looking for friends. People's writing styles say as much about them as their face to face gestures and facial expressions do, you just have to train yourself in what to look for.
And wow, this is way off topic and it's nearly midnight. Bringing it back with one final thought.
If your home is just another place where you're a stranger, and far away is just somewhere you've never been, I hope that you have the strength to just remember, I am still your friend.--Rich Mullins, "What Susan Said"
5. Friendship, Faith, and Autism
The main inspiration for this post in this present moment was that a friend of mine did a survey for a thesis on the role of faith in the lives of people with autism. One of his conclusions was that out of the people who didn't attend church, or people who had changed churches, it was more likely that they would cite social reasons than sensory reasons.
There was a lady who called Catholic Answers not too long ago. The subject of the broadcast was "why don't you go to Mass?" -- the type of callers the program was soliciting that day were people who, for whatever reason, had stopped attending Mass regularly. The reason this woman cited was that she had been diagnosed with Asperger's, which explained why music sounded to her like nails on a chalkboard, and that she couldn't sit through a traditional Mass where half the parts are sung. The radio host said simply that she had a special need, and should contact her parish to find out where and when the spoken Masses were.
Spock's most famous quote (at least in my experience) is, "The needs of the many outweigh the needs of the few, or the one." There are a couple of parables in the Bible, however, that advise that we do the opposite -- the woman who swept her house looking for the one lost coin, then spent more than all the coins combined in feeding her neighbors to celebrate, for example, as we covered in this coming Bible Study. It seems to me that, regarding sensory issues and autism, we as Christians have one of our best opportunities to live this parable out. If we're willing to adjust an entire service for just one person, we're showing this kind of love. And really, that goes for all handicaps. My parish recently had a sound system put in so that people with hearing difficulties can check out a headset at the beginning of Mass and hear and understand the service.
It's a little more difficult to understand with social/emotional difficulties -- especially when the person in question is sensitive about it.
I've often wondered what parts of Asperger's -- if I have it -- are just normal parts of the variation in human brains that God built into mankind, and what parts are handicaps which I'll someday be freed from. There are a lot of areas of my experience where I honestly don't know the answer to that question. However -- and I've said this before in a lot of different media -- I believe that my communication style and understanding is one area that does not need to be fixed or changed -- that is the way God made me.
Why is this so important to me, anyway?
Well, two reasons. One is truth issues -- I've spent my life endeavoring to be as truthful as possible, so I don't like letting misunderstandings go when it's in my power to correct them. I don't believe that my social skills are factually and objectively any worse than anyone without autism who had the similar lack of ability to practice that I did. One of the most serious problems with our middle/high school environment is that once you're "out," you can't get back in, and so you lose the necessary feedback you need to learn the required developmental skills, and the further "out" you find yourself, the further behind you are as an adult. I started my early twenties behind. I hate when people think of me as immature because of this (or say it out loud). Lack of practice or skill isn't the same thing as lack of maturity. Also ... not everyone learns the same skills.
I am never going to be able to automatically/intuitively interpret what someone else means in certain areas (some types of expressed emotional needs, things communicated primarily nonverbally but deliberately). Imagine if you were in a world where all the people smiled when they were angry and frowned when they were happy, and no one told you this. You wouldn't understand people's emotions, and even when you figured out the rule, you'd still be a bit slower than they were -- not because you were at all handicapped, just because your brain and conditioning works a different way, and it takes that extra translation step. And that's a very simple example using opposites -- the reality is far more complicated. And the thing is, we're all like this. We all have emotional reactions that are completely and wholly unique to us.
The other reason is simply that I yearn to be seen as strong. One of the core tenets of Christianity is that God likes using those seen as weak by the world to accomplish the most important jobs. Throughout the Bible, there are examples of people who -- not that God uses despite their sins and weaknesses -- but who are the most valuable to God because they're aware and honest about their brokenness and offer that to Him right alongside their strength. St. Peter is always my example for this (another of the saints I strive to be like one day). And, to tie this back to Xena fandom, the compliment that I received that made the most impact on me of all was "Elsie, someday I strive to write as many emotional words with as few emotional walls as you do." There was a time in my life when I was seen as mature, and strong. And there's a huge part of me that yearns to regain it. Not just with my closest friends (although that's still far better than nothing) ... but with the daily world around me.
To tie this back to autism and faith... I think that's what we as Christians need to strive for with any of our intellectually different members -- to be the one place where they're able to be strong and invaluable. To work harder than any other group to resolve conflicts and to see people with autism as individuals, to see past the handicapped parts that will someday be gone and to acknowledge and draw out the differences that God created which will endure.
Believe it or not... I think we're closer than the world thinks. Hardly anyone in Xena fandom thought of me differently when I told them my diagnosis, but no one in my church did either.
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