A Mid-Forties Butch Aspie
Makes Her Way
by MindWithoutWalls
(blog originally kept at WrongPlanet.net)
My Asperger List
A List of Reasons Why I Suspect I May Have Asperger's Syndrome
(or Possibly Some Other, Related Issue)
by Lynx Gallucci
Revised June 8-19, 2012
I'm revising my original list so that I can clarify my concerns and describe as accurately as possible the characteristics that have given me reason to be assessed to find out whether I might have Asperger's syndrome or, if not, whether there might be some other reasonable explanation for the difficulties I've encountered over the course of my life. In the past, I'd always thought things I'd been through in life were the causes of all my troubles. But I've become dissatisfied with this explanation. It only works in part, leaving many unanswered questions. I've come to see that, while my original assumption may be correct, there's nothing about bad experiences and circumstances that somehow retroactively precludes a person's having been born with a brain that functions differently from that of other people's. This understanding has been the opening through which I've been able and willing to look at other possibilities to fill in the gaps.
Some of the things on this list are things I've become more moderate about, as a result of either age or improved circumstances. Others I've learned to consciously overcome to some extent, in one way or another, by force of will. Over time, I've learned in life to do, in some way, many things I couldn't before; compensate for many things I still can't do; mask or disguise many things I can't compensate for; hide outright many things I can't mask; and work around many things I can't do anything else with. If all else fails, I can sometimes make a bad situation seem less bad by doing something like making a thing I've said or done look like intentional humor. Even if it looks like my attempt fell flat, it sometimes still makes it less bad. But sometimes nothing works, and things just are as they are. I would even say that there are times when things I've struggled with seem more difficult than ever. And, although I have found that being down or stressed can contribute to my difficulties, I've had them often enough when not having those feelings to know I can't simply explain them away that way. Instead, my varying levels of inability to accomplish or handle certain things has been the cause of much frustration, embarrassment, sadness, and anxiety.
I should note that understanding my troubles as potentially being Asperger's related has mostly given me a sense of peace. It makes my life make sense and lets me naturally feel less judgmental both towards myself, because it means these things are not the result of moral failing on my part, and towards others, because they have also been frustrated in the past by what they haven't been able to understand. If no explanation was previously available, how could any of us have known how to handle things any better?
I'd also like to note, however, that some of this process has been difficult for me. I've dredged up a lot from my past, and some of it has brought back to mind feelings of great embarrassment. Prior to this, I'd thought of myself as a person who, though certainly flawed, was healthy enough at this point in my life not to suffer much in the way of shame about myself. I now realize this perception has been the result of putting certain things out of my mind. Revisiting these things, as a result of asking people who've known me in the past to provide their recollections of my difficulties, has disabused me of this notion. And so I must say, in the midst of my attempt to collect enough information to get my assessment done properly, I'm really struggling with this thing I thought I was free of until so very recently. This is hard, and I often feel very aware of how alone I am in it. I also sometimes feel as though I've deceived the friends I've made in more recent years by hiding and disguising things about myself. I'm sort of starting to consider myself not to be the person I've represented myself to be and to worry that, if they knew these things about me, their feelings towards me might change. I've told some of them a little about what's going on, and I have mostly found support so far. But they don't know the full depth of my issues, and I don't know how much of what I'm telling them is believable to them at this point, anyway. I especially don't want anyone to think I'm making excuses for myself. I know some people might think I'm looking to have something wrong with me, and they may be wondering why I'd want to burden myself with a label and what I'll do if I can't "have my way" on this. They may not understand that this is about already knowing something is wrong and just wanting to get a better grip on what it is so that I can move forward better in life. I'm uneasy about facing people's judgmentalism on this. I don't look forward to anyone telling me, "There's nothing wrong with you; you're just weird." On the other hand, I sort of dread having someone find out what's going on and then hearing something along the lines of, "I always knew there was something wrong with you."
This list is not exhaustive, nor can it be. It is, however, quite lengthy, because I couldn't decide on anything I was comfortable leaving out. So, perhaps it might better be described as exhausting. It currently deliberately includes both things that may be related to Asperger's and things I'm sure are probably not but that may be helpful in determining if something else might be behind at least some of my issues.
All that being said, here is the list, as it now stands:
- I often need my friend to clue me in when she's kidding me, because she can tell when I get confused. I don't trust most people enough to let on if I get confused or believe them if they say they're only kidding. As a child, I could never tell when someone was only kidding, and I never really felt comfortable enough to believe it if someone said they were kidding. I also sometimes need my girlfriend to explain things people say when they're joking around. Example: In the SCA, one guy who'd been baron of our local barony (ceremonial leader of our local chapter) said the guy who'd been baron before him was his father. I was confused. My girlfriend had to tell me this was about succession, not actual parentage, even though the two guys are probably similar in age and don't look alike.
- My parents taught me about idioms and metaphors. I understand them as a kind of code. I may or may not be able to make any connection between what one means and why it means it. I usually just get a mental image of the literal meaning of a thing, such as picturing someone carrying an empty pail when I hear someone can't carry a tune in a bucket. Then I have to translate. Not only did I have to specifically learn to understand a lot of idioms and metaphors, even though I now usually understand them, they sometimes still give me a weird feeling, because I still have the drive to take things literally. As a result, I sometimes avoid using them, because I'm uncomfortable, though I can use them a lot of the time now. Example: I wouldn't want to say I'd give my right arm to have anything, because the idea scares me too much. Some idioms just frustrate me. I know that the "falling off a log" thing is meant to say that something is easy, but I never could understand why it would be stated that way. Falling off a log seems like something accidental that should be avoided, not like something someone would easily accomplish whenever they meant to do it. Who means to fall off a log? Besides, such a thing is something I'd associate more with being uncomfortable than with finding something easy.
- Although I've written poetry, and I understand what I mean when I write it, I often have trouble understanding other people's poetry. This was the cause of some frustration on the part of a friend who once read me something she wrote and then made a point of checking in with me about how I liked it. I totally blew it and didn't realize it was about something tragic. I think she felt insulted. I do better with music and repeated listenings, though. Songs are much easier.
- I didn't know what "A Christmas Carol" was really about until my mid thirties, even though I'd encountered the story repeatedly since childhood. It finally came to me while watching a production of it with my girlfriend. It's not about someone who becomes miserly because he's miserable. It's not being unhappy that he's being warned against. The ghosts are not trying to scare him into becoming happy. It's his miserliness that makes him miserable and alone. They're trying to make him generous so that he'll be happier and make others happier. This makes much more sense to me than my old notion about the story. I'm still not quite sure how scaring someone is supposed to make them feel secure enough to open their heart, though.
- I have to figure out a lot of things intellectually (which I can do more quickly now, from practice) that I couldn't understand from gut reaction before, but my gut reactions to people's facial expressions, body language, gestures, and tones of voice often don't match what's really going on. Example: Suppose you have a bad experience interacting with someone, and they mistreat you. You then tell a friend about it. The friend says, "That's terrible!" and makes an unpleasant face. Most people would realize she's being sympathetic. Her face conveys the emotion; her words state it. Most people would get this as a gut reaction to the friend's sympathy, and they would then feel a bit better. I understand this intellectually now, so I'm able to kind of overcome my gut reaction and accept the sympathy by making my intellectual understanding prevail. As a kid, though, I had only my gut reaction, which was that my friend was telling me that what I'd said was a terrible thing to say, and the facial expression was indicative of displeasure with my statement. I'd then feel bad for making my friend feel uncomfortable. So, I wouldn't feel any better at all. In fact, I'd feel worse, because I'd feel guilty. I didn't know I was interpreting things in the wrong way. When I figured out that I was, I couldn't tell anybody, for fear they would find it very unpleasantly strange. I already knew people found me weird, and I didn't want to make it any worse.
- By going to a high school reunion / anniversary of the school's founding, where I was welcome even though I dropped out and got my GED, I discovered that people were surprisingly glad to see me. I'd usually thought, prior to about my 30s, that people were just nice to me because they were kind, tolerant people, not because they really liked me. When I did think someone liked me, it often seemed like it was too much. I couldn't understand it, and I would feel uncomfortable and pull away. To this day, I'm uneasy if someone seems too friendly or too eager to get to know me and spend time with me right away.
- Sometimes, when someone smiles at me and I don't know why, it scares me. I feel uncomfortable when anyone winks for any reason. It feels kind of like being tickled in an uncomfortable way, when you don't like being tickled. If someone is being silly, making faces and big gestures, moving around the room, and getting loud, I get really disconcerted. I can hide it, but such actions scare me, even if I know why it's happening. Being winked at is particularly uncomfortable, though I've learned to behave smoothly about it so that I don't make anyone uncomfortable.
- I often think someone is angry with me only because that person says he or she wants to talk to me, and I anxiously wait to hear what I've done wrong. Example: A friend wanted to ask me a favor. She approached in a way that seemed cautious, walking slowly and smiling. I thought she was going to try to use a nice way to tell me I'd made her or someone else upset. I said nothing, and then I found out it was okay, because she just wasn't sure if I'd do her the favor or not.
- I also have some trouble distinguishing between someone's being angry with me and their being angry in my vicinity about something else. Here I'd like to note that I'm well aware that much of my difficulty surrounding anger probably has to do with growing up with my mother. However, I think that kind of trouble has been exacerbated by my difficulty in reading people. The whole world is not my mother. But anyone can be confusing to me.
- I've had times when I've reacted to people's words of reassurance by experiencing a sense of threat or condescension. I don't know why this is. But I've sometimes wondered how people were really thinking about me and what their intentions really were. I haven't always had the sense that everyone considered me to be an adult, but sometimes I've felt that someone meant well and I was simply reacting inappropriately by feeling weird about it.
- There have been times when people have apologized to me without my knowing why. If they don't explain it, I can't figure it out. This leaves me wondering if whatever they did was too insignificant for them to want to go to the trouble to explain or if it was so bad that they don't want to have to.
- What I sometimes think is fibromyalgia mind fog might actually be some other kind of overload or shutdown. If I feel taken by surprise, put on the spot, like I have too much to deal with, emotionally overwhelmed, or sometimes for no reason I can discern, I can't get my mind to work. It feels like mentally being in front of a blank wall or having stuck gears. When that happens, I can't carry out the general plans of my day; can't do specific tasks, such as balance my checkbook or wash dishes; can't think well enough to speak with others; or struggle to get words out, even if I can think of them.
- I need systems for things in order to make my life run smoothly. I can only manage so many things at a time, and I manage fewer if I don't have a schedule or something to help me. With the right aid in place, however, things work much better. I'll get muddles again if my circumstances change or my schedule gets disrupted. Moving from my apartment to my girlfriend's house made a mess of my ability to keep on top of washing dishes and other household chores that I'd automatically do as part of a routine I had. I've only been able to reestablish good housekeeping and such by actually making a chart on a white board with dry erase marker. Now the house looks much better, and I no longer feel as though my thinking is perpetually cluttered, everything is always piling up around me, and my life is in disarray. I need a chart for household chores and yard work, as well as one for personal activity (both routine and irregular).
- My time management skills are, quite frankly, poor. I'm often, though not always, late because I keep finding more things I have to do before I can get out the door. I also find that things take longer than I expect, even if I don't add anything. I can spend all my time, from when I get up in the morning until I have to leave the house for something, doing nothing but getting ready to go and still manage to be late. To be on time, I generally have to plan for a much earlier departure time than I would actually need in order to have time to get to where I'm going. That way, if I leave later than I planned, I can still have a chance at get where I'm going on time. This is not always enough, however.
- I've had times of sudden, intense anger, though I tend to experience these more internally than externally if anyone else is around. When I was growing up, my mother had explosive times of anger; sometimes short-lived outbursts, but also sometimes longer lasting, as sort of adult temper tantrums that would go on until she went upstairs and cried herself to sleep. The she'd come back later, and we'd all have to behave as though nothing had happened, so as to not set her off again. This especially happened on the holidays, though not only then. My personality and my situation at home, which I believe made it unsafe for me to be too outward, made me tend more to implode than to explode when my feelings got to be too much. If my mother were still living, she would probably remember better how I was and how much slipped out. I know she was aware of my moments like this, though, because I remember her talking to me about it, though I don't remember those conversations very clearly. It seemed she was very displeased with me and wanted me to know it, though.
I tend to be much more likely to suddenly be angry with inanimate objects than with people. I'm usually not destructive, and I'm never violent towards other people. As a child, though, I upset my mother by tearing up my own drawings as a way of expressing my rage. So, I know this goes way back for me. This continues for me to this day.
- I have many intense emotions, though I think I've mellowed somewhat over time and developed an at least somewhat greater ability to have mid-range emotions. My feelings are generally triggered by something I can identify, whether it's an incident or general tiredness. If my overall mood tends to be one way or the other, it may be harder to isolate the cause, but I suspect it has to do with my physical well-being, external circumstances, and/or whatever has been on my mind lately.
- I recall having had to learn to make eye contact in high school. I've only recently been clued in that I might sometimes be doing it too much. This may be why I've been told a couple of times that I can seem intimidating, even to a large-sized grown man who was older than I was when I was a very young adult. I also have learned that the technique I use for eye contact when I'm speaking in a group discussion may look unnatural. I do what I think of as "turn giving" by looking at each person for a little, choosing the order randomly, until I get all the way around the group. Then I do it again, until I finish speaking. I've read, though, that other people somehow manage to include the whole group of listeners by looking at just one. I don't know how or why that works, but it doesn't make sense to me. It does seem better, though, than not looking at anybody.
On the positive side, I've had friends I've recently asked about it tell me that my eye contact is fine. This is good, because, as a result of learning that I might be overdoing it, I've tried to adjust to a better way by making sure I kept track of how long I looked before looking away. This can be exhausting, especially for my eyes, and makes it very difficult to focus on what someone is saying to me at the same time as I try to count the right number of seconds.
I should note, however, that I don't remember if I was relearning eye contact in high school after having lost some of that ability somewhere earlier on or if I always had trouble with it and was learning something for the first time then. I do recall, however, that my mother demanded eye contact when I was very young, particularly when she was angry with me. I've wondered if this might be why I sometimes really stare at people's eyes while talking with them when I'm nervous around them. I tend now to think I knew something of eye contact before high school and also had some measure of difficulty, so that it was a partial problem and not enough for too may people to take too much note of it.
- There are certain things I have to do in certain ways, though it really may not be all that many. Examples: No matter how hard it is to get the foil or paper cover off underneath the lid of a jar or bottle, I refuse to just stick a knife through it. I peel the whole thing off, no matter how long it takes, because doing otherwise would bother me too much. I've learned to be less upset when things I'm particular about can't be the way I want them, but even if I entirely give up on making something the way I want, I just find new things to be particular about. I don't deliberately look for them. It just happens.
- I like to be precise. If I make a mistake, it bothers me until I can make things right, even if weeks go by. I used to be so accurate in recalling conversations word for word that a friend of me made a big deal out of it. I was very sensitive about it, though, wondering if this meant I seemed too weird or annoying to others because of it. I deliberately learned to paraphrase after that, so as to seem more natural to others. This may have been a mistake, however, as I miss the ability to be that accurate. It gave my memory exercise, and now I'm a bit more out of practice.
- I sometimes need to take comfort by being in a small space. Example: I sometimes make a tent in the living room by putting a blanket over the couch. One side goes over the back of the couch, the other goes over the backs of a couple of dining room chairs. Sometimes, if I'm very stressed, I need to hide in there even if nobody else is home. I don't need to escape my girlfriend, but I find being in there makes me feel better, even if I invite her to come in and share the other end while we read together. So, it's the space that's the comfort, not that it's a barrier between me and someone else. I would be claustrophobic, however, in some other small spaces, so the need to feel like I have enough room and can get out easily are also important.
- When I'm working on a project, I tweak it over and over, out of dissatisfaction with the details, so that it takes me a longer time to finish than it would for other people. Example: When I'm writing, I rewrite and edit over and over. Later on, I still can go back sometimes and correct things. I can end up fussing over it until I've sat long enough for my body to be in pain and for my eyes to hurt and feel blurry and tired. Because it's difficult to stop, I have to make a special effort to make myself take breaks for necessary things, such as eating. This has caused me both fibromyalgia pain and other issues. As a child, this caused some issues that were embarrassing for me as someone who was already toilet trained and in school. When I was in my late twenties, I once had a period of time during which I spent so much time working on something I was writing that I developed such tight muscles in my shoulder that the side of my face began to get numb. If I spend too much time on the computer or doing some other kinds of things, this problem can still return. I probably should talk to my doctor about this, but I keep forgetting when I'm in there, because I'm always there for something else. It's sometimes been bad enough to make my jaw too sore for me to open my mouth when I want to eat something.
- I often have difficulty pacing conversations properly (speaking at appropriate times and for appropriate lengths). This is especially difficult on the phone. Sometimes I interrupt or talk over people. Sometimes I talk too long. At other times, I can't find a way to get a word in edgewise, so I give up and just sit. Sometimes I don't want to talk, but I feel dragged into a conversation out of politeness. Sometimes I'm left alone amongst people, and I'm content to spend the whole time not saying a word, no matter how long I'm there. I sometimes have trouble following other people when they speak, especially if they talk a while or if I'm tired. I also sometimes bore people, I think, by talking about the same thing too long during a conversation or too often over different conversations. If I get interrupted, I can lose my train of thought, though I suppose this happens to everyone. But sometimes I keep redirecting a conversation back to my topic if I don't feel done with it, even if someone else changes the subject. I suppose this is rude, so sometimes I remember to limit this if I can realize that it's not really important enough to finish talking about something.
Listening to someone talk is like having the tuning on a radio be kind of iffy. Sometimes it comes in well, sometimes not. Anytime in my life that I've had my hearing tested, though, it's been fine. It feels more to me like I can't always get the words in, even though I'm trying. Some of them seem to pass over too lightly or something, so that they don't stick. I might need them repeated in order to get them in. I need them repeated as exactly as possible, though, or else I need to start all over again from scratch. I can try to do this myself, by remembering what's just been said and repeating it to myself, until it makes sense to me. But I can get behind this way in a conversation. It's like having a strand of spaghetti fed to me from a machine that goes slightly faster than I can slurp it up. Eventually, I have to just cut the strand and then start over. But then there's all this spaghetti piled in my lap, that I'll never get to eat. It's kind of a mess. I can only account for some of this by ay of identifiable distractions. sometimes I'm just tired, and nothing makes much sense anymore.
- I have to really gear myself up to make phone calls. It can take days or weeks sometimes. I have to feel ready, or else I can't seem to make myself do it. This can happen with e-mails or visiting people, too. I just can't seem to do things before I feel capable of handling them.
- I often didn't interact well with kids my own age when I was growing up and spent many hours upon hours playing alone, which I generally preferred. I often tended to be more comfortable with adults, though I sometimes felt uncomfortable with them, too. Although it wouldn't be true to say I never had any friends, I generally went at least somewhat outside my age group. I also usually carried out my friendships "lightly", which is to say, with little exception, there was not any real consistency or great frequency regarding playing with any particular kid. Even the exceptions didn't last all that long. Some kids I had longer friendships with also seemed not to have a lot of other friends or to have other kinds of issues. The great advantage to playing alone was that there was no one to disrupt the playing out of whatever idea I had in my head about the way things were supposed to go.
- Until my 30s, I had no close, romantic partner, ever. I think my friends were really like other people's acquaintances, my close friends were like other people's regular friends, and I tended to have my closer friendships serially, the way others have romantic relationships serially. Being with other people seems like having a Plexiglas wall between me and everyone else or the way it would feel to your own leg if you put your hand on it while you had an extra layer of denim there, as though you were wearing two pairs of pants. (This is how someone who'd been paralyzed but was getting some sensation back after many years described how her legs felt.) The earliest that I can remember having tried to express my feelings of separateness to others is when I was in fifth grade. I now wish I still had the poem I wrote back then. I wrote it in class, because the teacher had a poet come in to talk to us and read some of her work. Then we all had a chance to write something of our own. Mine was about being trapped inside a mirror, unable to get out to where other people were. I was referring to myself, but, for whatever reason, I had difficulty openly identifying myself too closely with it, so I wrote it in the second person.
- Although I sometimes enjoy having company for an evening and can even manage a few days without too much discomfort, if necessary, I find it very stressful to have anyone stay at our house for very long. Over the course of the visit, I become increasingly distressed about our guest being in our space, touching things, leaving things out of place, and disrupting the usual flow of the activity of my days. Example: My girlfriend wanted a friend of ours who visits from a foreign country for a couple of months at a time, once or twice a year, to spend some of that time staying with us. I was nervous about agreeing to two weeks, but she told me after she'd extended the invitation, so I consented. A greater portion of that visit ended up being spent with us than originally anticipated, however. Although I liked this friend, and still do, by the end of five weeks, I was so distraught that I felt I was hanging on by the barest thread. Discussions after the fact ensued which nearly ended my relationship with my girlfriend, because she didn't want to be deprived of the time she valued with our friend, and I'd had such a hard time coping. Although we managed to stay together, the same problem arose again when our friend returned for another stay of several weeks, also nearly ending our relationship. To try to work this out, we've agreed that stays should last two weeks, then there should be a break, and then another two weeks can be had. We have yet to try this, so I don't yet know how well it will work, though I hope it does.
- Unexpected guests, invitations, and phone calls disrupt and interfere with my day. This conflicts with my genuinely being glad to spend time with people I like. My initial reaction to hearing the intrusion of the phone ringing is to be annoyed. I'm distressed whenever new plans make me set aside my routine, though I've learned that some aspects of my routine can be temporarily suspended if I can get myself caught up at another time. The result of this adjustment has been a greater ability to engage in activities I might otherwise miss. I struggle between the urge to have life be very predictable and the need to diversify my activity so as to not become too limited a person. I only have so much time and energy, so something's got to give somewhere.
- I've learned that I can get overexcited and have to take care not to let this out too much in front of other people. I've been working on this one for years, ever since childhood.
- I've had to learn to get around my initial reactions to things my own girlfriend has done. I know she doesn't deliberately close lids too tightly for me to open them, for example, and that her normal activities around the house are not a deliberate disruption or intrusion. Indeed, I live in her house, so I'm really the foreign agent, as it were. I'm now trying to implement better ways of coordinating household chores and getting them done, so that the spaces I move about in work better for me while not interfering with her. We discuss compromises so that we can have practical solutions we can both agree on. It helps me to be as organized about this as possible. So far, this approach seems to be creating some improvement.
- It took me a very long time, I think, to get it about how tired my girlfriend is at the end of the day. It was challenging to adjust things just right so that she would feel welcomed home but neither overtaxed by a demand for attention nor neglected as a result of my overdoing an attempt at giving her time to herself to calm down after work.
- My mother noted in a conversation I once had with her that I seemed self-centered and insensitive to others as a child, though I think at least part of that was because I couldn't always understand other people, not because I didn't care about them. Part of it was that I was just really self-contained and somewhat independent of a certain amount of need for social outlet, and part of it was because I got somewhat preoccupied with things like my pain from being bullied. I had to learn to respond to the interests and feelings of others, not just blurt out things that interested me but that were unrelated to things they said. On another occasion, perhaps in reference to the same things, my mother said I hadn't been a very nice child. Later on, though, after time had passed, I asked her what she'd meant by this, and she said she couldn't remember. I don't recall anyone else ever saying I wasn't a nice child, though, so I can't be sure what this was about.
- As a young child, I sometimes repeated adult humor, because I didn't understand the jokes. I only knew I'd seen people laugh at them. This got me into a little trouble. I suppose all kids do this at some point, but I've even managed to make some blunders as an adult. I'm not always thinking about my surroundings and what kind of company I'm in, I suppose. This has caused others some offense and me some embarrassment. I don't mean to upset anyone, and I'm genuinely sorry once I realize what I've done wrong.
- My areas of interest may be singular or multiple (in small number) at any given time, but I do really delve in. This may not always be noticed, because my usual practice is not to collect and memorize facts and figures. Instead, I prefer to get an understanding, and this may not always seem to me to have anything much - or at all - to do with things such as dates. But I do get very focused, and then it dominates my time and conversations unless I really make myself not behave that way, which I've learned to do better over time. My poor girlfriend, however, gets the "less abridged", shall we say, version of my discourses. Right now, it's all about Asperger's, of course. However, while I'll often enough get so caught up in something that I'll neglect or run out of time for other plans, my interests don't keep me from ever doing anything else. I'm also not an expert in anything.
- I do repetitive motions that have no apparent practical use. I think some of what I do might be stimming, but other stuff may be tics or merely habits. I rub the same spot on my teeth with the tip of my tongue. This is almost constant, though it's not particularly noticeable to anyone else. I also have some shoulder movements I can't seem not to do sometimes. (I originally thought this was only when I felt uncomfortable with something about my clothes or a seat belt, but I've since discovered that I also sometimes do it when I'm at home and not dressed.) As a young child, I used to press on my gums, between my teeth, with my fingernail. My mother and older sister were always telling me not to pick at my teeth. (My parents always made sure we had good nutrition and practiced proper oral hygiene, and my teeth and gums were always in good condition, so that was not the cause of my activity.) When I was a teenager, I remember how my family pressed me to stop jerking my head to the side to get my bangs out of my way. I repeated this movement so many times in a row that they said they were concerned I would hurt my neck. I succeeded in suppressing that one pretty quickly, but the tendency to do one thing or another never went away. I also sometimes will say a word and either like the way it feels to say it or dislike the way it felt the first time it came out and want to correct it, even if it sounded okay. This can lead to my repeating a word or phrase over and over, even if it's very quietly and discreetly. If need to, I'll find a legitimate excuse to keep inserting the word into my conversation until I've managed to say it enough times for it to feel right.
Although I don't flap my hands and don't remember if I ever did as a small child, I do sometimes notice myself clenching one or both hands for no reason, even if I'm not feeling stressed. Sometimes I hop up and down a little or shake my fists rapidly, in a small way, with my arms bent and my hands in front of me or with my arms straight and my fists down at my sides. I've done this both intentionally, in front others, for silly effect, and as a response to the simple urge to do it when waiting around or feeling excited while I'm alone. I suppress the urge in any environment where I'm not comfortable or don't know and trust the people around me well. I think my public displays for the sake of silliness help make any time when I might accidentally respond to the urge publicly seem less out of the ordinary for me. I also sometimes curl and uncurl my toes. These things can be a reaction to stress, a stress reliever, or just pleasant and fun to do. Here are some other things I do: tap my toes, with both feet alternating, rapidly against the floor; clap my toes together rapidly, as though they were hands; listen to the same song over and over or sometimes maybe listen to a whole album over and over; make sounds or silent movements with my lips; tap my hands or just fingers on my legs or another surface; rub my hands on the steering wheel while I drive; make grunting noises or other vocalizations; hum the same few notes over and over (I call it my theme song); hop in the same pattern of bounces to one side and then the other, whether while sitting or standing (my theme dance).
- I'm sensitive to certain kinds of physical sensations, sounds, and light (though at least some of this may be attributable to fibromyalgia) Examples: It feels almost physically painful to me if people are drumming at a practice and someone is out of rhythm or there are too many players (let alone both). My friend also finally got me to admit I don't like her shruti box, which is sort of like a suitcase like squeeze box with levers to make notes. I can hardly be near it, and she noticed I was struggling to be polite but also trying to get away from having to hear it. I felt bad about that. Blinking lights can sometimes make my eyes feel bad, and I find moving icons on the computer irritating. But I can freeze them by hitting "Escape" so they don't distract me anymore.
Here is a brand new example: I tried to play music with a bunch of other people. There was a guy I hadn't seen before. He was playing complex stuff on a saxophone. There seemed to be nothing wrong with his playing except that it was loud and that he kept stopping to talk to one of the guitarists while the music was still going on. I spent the whole time wanting to leave but making myself stick it out. I managed as much polite conversation as I could at the end, but I got away quickly and came home. I spent quite a long time on the couch, hunching up and grabbing my hair in my fists. I felt like the inside of my skull was on fire, and as though some kind of mental pain was coming in jolts of varying degrees. This went away after a while, but it took me hours to calm down and begin to feel right again. I couldn't do anything too worthwhile in that time. If anyone had seen me this way, I'd have been embarrassed and tried to hide it or downplay it. I can't allow anyone to see me in that state, because other people would likely find it too upsetting. That's just unacceptable.
- Although I'm usually okay with being touched by people I know and feel comfortable with, I'm very particular about being touched, as some of the people around me can attest. I'm best off if I know it's coming and feel I have a choice in the matter. I can generally mask that one, for the sake of social acceptability, but when it's too much, it shows. Examples: Whenever my fourth grade teacher would count the kids in the class as we returned to our room from somewhere else by touching our heads, I used to duck because I hated it so much. Not long ago, a friend's mother noticed I'd gotten a haircut since the last time I'd seen her. She reached out to try to touch my hair. I leaned away, saying, "Please don't do that." She said, "I'm not gonna..." even as she kept reaching towards me. I leaned away more, repeating myself. She reached more, also repeating herself. I had to get up and step away to get her to stop trying. She apparently didn't want to pursue me across the room. I was weirded out by this, and it took a long time for me to get over that creepy feeling. I also have a tendency to think I'm in someone's way if they come up behind me, and I've come to realize that some of these times may have been occasions when someone meant to hug me.
Sometimes being touched is like getting a compliment. I can save up the memory of it for later, when I'm alone and it's quiet enough for me to think back on it. Then I can be more likely to get the positive effect that was originally intended. I've learned to be gracious about these things as much as I can, so that I don't make anyone uncomfortable. I think I miss some things sometimes, though, and I've occasionally realized after the fact that a thing I thought someone was simply noting, that I then gave an explanation for, was a thing I should've accepted as a compliment.
- Compliments, criticisms, and insults can all feel like confrontations. I have to save them up to process them. Compliments usually feel better later, while criticisms and insults feel worse. I try to do the socially acceptable thing in response to each, either saying "thanks" to the compliment or attending to the concerns expressed by the criticism and offering as appropriately tailored an apology as I'm able. If insulted, and if it takes me a moment to realize I've been insulted, I try to go with my initial delayed reaction in order to prolong it. That helps keep me from overreacting and looking foolish or immature. If I experience the insult right away, as a confrontation, I try to take advantage of my initial confusion over how to react to, again, allow the delay to make me seem more cool about the matter. If I can figure out things in time, I may, on rare occasions, be able to succeed in coming up with a good retort. But I'd rather be clever than mean, defending instead of returning an attack, so I have to be careful with that.
- After I've been in a social setting, I feel the need to review it, sometimes at length, to make sure I've behaved properly. I carefully consider all errors and moments of confusion. I plan for the future by resolving how to do better with anything that's bothering me about what went on and how I handled it. I need to do this less now than in the past, because I'm generally better at both the interactions and the reviews now, after years of experience. I also have my girlfriend to help, and this makes the process easier and more efficient.
For me, the difference between a compliment and a criticism is usually that, later on, a compliment feels better to think back on and a criticism feels worse. Both can feel like a confrontation when they're first given. Sometimes, though, being praised for something is a thing I can deal well with at the time, being caught up in whatever fun everyone is having. Later on, I'll be uncomfortable as I reflect on whether or not I feel worthy of it. That feeling of unworthiness is sometimes present in the moment, too.
- I frequently have delayed emotional reactions to things. I might respond positively to something initially, then object later. It seems to me that this is because I'm taken by surprise and can't process things quickly enough to really know how I feel yet. (One advantage of this, actually, is that it can allow me to listen to someone without judgment, so that I can work through my feelings in privacy and get over them before speaking with that person again.) I also think I can have a slightly delayed physical reaction to things. I've experienced a pause between having someone make even inappropriate kinds of contact with me and being able to respond in some way. This isn't because I think what's happening is okay or because I don't know what to do or am afraid to act once I register what's going on.
- My mother sometimes called me a "Helpless Hannah" when I was growing up, because I often couldn't find things that were right in front of me, even if she described where they were in an attempt to direct me to them, and because I was sometimes confused or seemingly unable to do simple things. This was problematic when she needed something from another room and found it did no good to send me for it. When she'd go in there to find whatever it was, it would be obvious and exactly where she'd thought it was.
Here is a recent example of a time when I found something simple difficult to deal with: On the weekend, when my girlfriend and I were in a hurry to get going, and I needed to get into the car, I found there was a receipt on the passenger seat. It was from a purchase she had made. I couldn't sit down until she moved it, because I didn't know what to do with it. So, I just stood there. There it was, this foreign object, right where I needed to be. So, I couldn't get into the car. But she's used to this. She just moved it for me. Then I could sit. I realized after the fact that I could've picked it up and then handed it to her, but I couldn't do that at the time. I have no way of explaining this sort of thing to someone who's never experienced it. (I also just found out that, in all these years, she'd never had any idea that this was why I always waited for her to move things before getting into the car.)
- If someone misunderstands me and thinks I've asked a question that was too personal or made some kind of rude comment, when I realize a mistake has been made, I find it much easier to apologize than to try to explain. There are people who, to this day, still believe I said things to them that I never actually said.
- Just as I can't tell if someone likes me unless they say so, I can't tell if they like something I've done. I can't tell why they do, either, but I've figured out that asking questions to find out would be awkward and make a wrong impression.
- I have a terrible time trying to rate things on a numbered scale. This may be frustrating for my doctor. How am I supposed to rate a thing such as my level of discomfort this way? I can't connect the concepts to the numbers. I do not much better when I'm comparing things in order to list them from most to least favorite. I know there are things I like better than other things, but when it comes to longer lists, I can see how I might somehow prefer A to B and B to C, but I might also have a way in which I prefer C to A. Ranking them then becomes impossible.
- I've found it can take several times of being told something before the information will stick in my head. I keep forgetting bits and pieces, and I worry I'll make mistakes as a result. I'll also sometimes forget I asked about something already or remember that I asked but not recall the answer that was given. Without enough information, I can't feel satisfied that I really know what's going on.
- I can't always tell when someone understands me, so I keep explaining. This has caused others to accuse me of repeating myself. I also talk longer than I probably should because I feel the need to be thorough and explain all the details in order to feel satisfied that I've said all that really needs to be said. I've spent years trying to scale back on this, but I can't always manage. Imagine how all this complicates things when I might be getting sympathy.
- Although I can feel overwhelmed by too much social interaction or physical contact, I also feel a need for such things. The resulting contradiction is that I can feel as though I've had too much before I've been able to get enough.
- I sometimes mistake people for each other or don't remember their faces, though this is a mild problem. Example: My aunt had a party that lasted all Labor Day weekend. I met several of her friends. After having spoken with two of the women on several occasions over the course of the weekend, I still mistook one for the other and didn't realize I'd been having a whole conversation thinking I was talking to one when it was really the other. I was embarrassed when she said she wasn't the other one, but when I then saw the other, it really sank in how different they actually looked. I don't know why I got confused. This is not the only time this has happened, though it doesn't happen most of the time. I can't tell what's different in the instances in which it occurs.
- Although I have enough agility to catch myself, so that I may actually fall less often than other people, I think I stumble more often than they do. I've developed agility from climbing around on a steep slope as a kid and hiking as an adult, as well as learning to juggle in high school, among other things, but I'm clumsy to begin with. I've bumped into walls, accidentally hurt myself in the shower by carelessly scrubbing too hard or accidentally sticking my finger up my nose while washing my face, stumbled, knocked stuff over, accidentally scratched or sliced myself with my own fingernails, and so on. Sometimes I'm glad that I'm alone enough of the time for other people not to witness these things too often.
- I didn't know until very recently that most people probably experience their thinking as being inside their heads. I thought that was sort of metaphor-ish. to me, most appear to be outside of my head. A lot of times, they're to the front and slightly to the right. When I was dating someone in my early thirties, thoughts and memories about her seemed to me to appear as though they were up in a particular corner of the apartment I was living in at the time. This seemed to be the case no matter which way I was facing at the time. It was kind of like having a TV mounted up there.
- Certain things are disturbing to me for no reason that I can discern. The rapid scraping of a container bothers me because of the way it looks, not the way it sounds. It gives me some kind of ugly feeling. I can think of no experience I've ever had in life that could have caused this. If the sound is also bothering me, that's a separate issue. A song I recently heard caused a disconcerting physical sensation when the singer went from low notes to high ones, with vibrato. I've never had this reaction to that singer or that kind of change in notes before, and I experienced it as almost being like getting a shock each time she did it. I responded by listening to the song repeatedly, to try to accustom myself to it, because I otherwise like the song.
- As I go through places where there are lots of things to see and touch, I find myself stopping frequently to experience them, sometimes even if I'm in a hurry. In a store, for example, I'll pause to look at things I'm not intending to buy and feel the fabric of clothing, blankets, and towels as I pass by them. I often will ask my girlfriend to do this with me, because I'm so excited over how something feels. I think I also feel less strange doing this if she does it with me.
- I sometimes experience things that originate externally to me very intensely. When I listen to music, different songs, regardless of the lyrics, can give me a distinct sense of falling, running, leaning, pushing, pulling, or other sorts of movement. One I recently listened to had a part that brought to my mind the image of flat, broken off pieces of wood and a sense of something sliding off them. Another had a part that made me think of gallons of water being dumped from the ceiling, all at once, onto a floor in a dark room. Some songs, even if the lyrics are about a difficult subject, have music that gives me the sense of waves and waves of textured vibration and light pouring out from my chest. It gives me the urge to move my hands outward from there over and over again, though I think if I actually did this, it would spoil it. Maybe it's because I'd be self-conscious about it. Anyway, these songs give me a sense of great joy. If the lyrics do support the music for me, I can put that song on repeat and listen to it until I feel what I guess I'd call euphoria. So, I consider there to be an up side to the way I am. As a result of this process of reexamining myself and my life, I'm now starting to feel comfortable with the idea of being somewhat more open to reactions that I have, up to this point, felt compelled to either suppress or hide, for fear that they would be more than I could handle or that they would make me seem far too strange to other people. Perhaps I'm old enough now to be better able to find some kind of balance. I also think the amount of meditation I've done at certain times in my life has helped me to develop greater self-awareness, balance, stability, calm, and maturity. Perhaps this will make exploring this aspect of myself a bit safer these days.
- When I see a field of a certain shade of green next to a field of a certain shade of blue on a computer screen, it makes me think of peanut butter, for some strange reason. I can almost smell it just thinking about it!
- Reading about Asperger's and interacting online with those who have it has given me many moments of recognition of common difficulties, experiences, and feelings. It's provided for me a sense of being understood, understanding others, and fitting in that I have not experienced before. Through the lens of Asperger's, I feel I better understand myself, and my life makes more sense.
The MindWithoutWalls Asperger's Syndrome Assessment Blog:
A Mid-Forties Butch Aspie Makes Her Way
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