Sophist

[Sophist]

There are some people who are able to journal. I find it a strange concept. I personally find it very difficult to journal. My blog tends to be updated sporadically when I get an idea, this thread is the same, as well as other journals or blogs I've had. What is it that makes journaling or free-writing so difficult for me? I'm not exactly certain. Some things that may be involved though are:

1. Perfectionism: were I actually to write something about the events of my day I'd probably continually go back and edit it until it's presentation-perfect (not exactly the idea of a journal).

2. Translating thoughts into words (either spoken or written) does tend to take more energy from me. Sometimes I am just tired at the prospect of having to write something, feeling like it's more trouble than it's worth and that I'd rather just leave my thoughts in imagery form and keep them to myself.

3. Weak central coherence (local processing bias). When it comes to free-writing, often I just don't know what to write about; and I can't just start writing. I need an idea, a trigger, a goal, something very clear and concrete. You've heard of "loose associations" and flight of ideas? Well, mine is "tight associations" and grounding of ideas, heh.

I also find similar, although slightly different, difficulties with my drawing. My drawing is very perfectionistic and I just can't seem to "doodle". When I start something, I am very product-oriented and I never draw just for drawing's sake. Consequently, for an artist I actually draw/paint very infrequently. What I do draw/paint however is all the more impressive (modesty aside).

My perfectionism is all the more obvious in my drawings than in my writing. Because a written piece can be endlessly edited, there is little fear of making a mistake. But for drawings, while I could always get a new piece and start over, usually when one makes a mark that mark stays. Even erasers are poor safeguards because the original mark indents the paper and can show up later. Therefore, to me, one of the most frightening things in the world is a blank piece of paper.

And I also find it incredibly difficult to just begin a piece with only an image in my mind. I am a very visual person, however my imagery/memory is not especially detail-oriented (I pay attention to details but I have difficulty reproducing those details in my mind's eye). It is more general shape/form/color that I "record" and so I cannot just see something in my mind and reproduce what I see behind closed eyes. Therefore, I need things in front of me to start me off. I find this especially frustrating because it means I am very dependent on having my subject matter in front of me in order to create.

I should state though that even though I have difficulties in both these areas, I still write and I still draw and paint. I just don't do it until I know what I want to do.

[Sophist]

I wasn't diagnosed with Asperger's Syndrome until I was 25; I hadn't even heard the term prior to age 22; and "autistics" were just people who couldn't talk and I didn't know much about.

Well, much has changed. And as I've aged, I've matured-- and immatured-- a little more each year. In high school, like most teenagers my amygdalas ran wild with my logic and I largely did whatever I felt like doing and to hell with the consequences. This included holding a grudge against a high school chemistry teacher to the point I almost failed her class out of my own stubbornness; and this eventually came to me barely having graduated high school despite having started out on the honor roll.

Through a slew of wrong diagnoses, wrong meds-- and heavy ones at that-- I was very lost for several years ranging from my mid-teens to early 20s. It was a horrible time, and I was very disordered, whatever label you wish to stick to that.

Since I self-diagnosed and later on was professionally diagnosed, my life has changed so much that I almost no longer recognize myself. While I was always an introspective individual, knowing that I am autistic has given me an incredible framework in which to understand myself and expand that understanding. In a short time I've gone from a person who was rather lost and wandering to someone who knows EXACTLY what she wants to do with her life, where she's going, and what she needs to do to get there.

Life is good right now. Very good. And while I know I am autistic, there is always the questioning, the doubt. I am doing so well that even I would concede that whatever my personality is like, I do not feel disordered, I don't feel impaired because of my autistic traits because I have learned so well and so quickly to work WITH them rather than against them. I am a naturally anxious person; however, rather than embracing this nervousness, instead I use methods to stop anxiety right when it begins before it gets set in. I don't allow myself to give energy to unpleasant repetitive thoughts. And I don't allow me to beat myself up for mistakes I've made. I am autistic, but I feel very psychologically healthy. --Healthier than most people I meet. I am tired of this idea of "disorder" versus "normal". I am autistic, but at least presently it doesn't cause me impairment. At least not so that I can't deal with it on my own.

But I have to concede that, aside from any intrinsic qualities I have, half of this non-disorder of mine is sheer luck. Lucky that my life is going well, lucky that I have some financial stability, lucky that I have a support system (despite that I'd like to broaden it more), lucky that I am enjoying life.

And this could change in an instant. In my life, I am walking like on the edge of a knife-- doing well while I can remain balanced. But if the ground should shake a bit, I won't find it so easy to stay on.

We all walk on the edges of knives, I realize this-- autistic and not. But perhaps for autistic people, those who are doing well, the blade is a little thinner, our balance a little poorer, and the fall just a little farther...

[Sophist]

Over the past year or so, despite my diagnosis, despite that I know logically that many of my personality characteristics fit the mould of autism, I have been feeling very un-disordered and unimpaired to the point I almost feel guilty in some respects calling myself autistic. In my opinion, the genetics and behaviors of autism aren't limited to what clinicians and researchers have decided to label as "autistic" for the sake of pathology. So even though I don't feel particularly impaired, whenever I reflect on my behaviors and cognitive style and ask myself "Are these the behaviors and cognition that of autism, 'disorder' exluded?" And then invariably and quite honestly I answer "Yes" to myself every time. Nevertheless, I find myself floating further away from the label I've been given, feeling uncomfortable to use it sometimes-- as though I am lying somehow.

But then sometimes I think the only reasons I don't feel impaired is because the circumstances in my life currently are very ideal. I have a steady income, I have a few friends, I look forward to my future, my schooling is going well, my family is supportive, and I have a place to find like minds and experiences here on the internet to further my support system. In addition, the friends which I do have are pleasant company and fairly intellectual themselves, so our interactions are a bit more "aspie-ish".

However, this was illustrated to me last night:

There is a group of acquaintances/friends of mine who I hadn't seen in several years. It was the birthday of one of those friends I've kept in touch with more. --I should mention that this is a very eccentric group in itself, but within this group, aside from myself, there seem to be two other definite aspies. After an evening of group socializing (which tended to focus around jokes and sex topics, etc.), we went back inside and talked for awhile more. Then the two other aspies and myself broke off and went into another room where we all hovered around the computer trying to figure out a printer problem. And from there we talked about computers, then moved on to a project which one of these aspies is putting together and so we discussed how the other aspie and myself could help-- all fairly business-like.

While there was a break in the conversation during which we were readying the computer for defrag, I stepped back and realized how overwhelmed I'd gotten in the larger group (despite that I certainly felt like I was enjoying myself and was joking around and having a good time) and how going into the other room and talking about computers and other such topics was a much needed "break" from more typical socializing which I hadn't even realized until that point I was needing. It just felt so nice to talk about particular topics with just one or two people rather than an entire group of people.

This illustrates a problem I do have in which I lack awareness-- which, for me, doesn't often happen as I have been told and consider myself to be an inordinately self-aware individual. I am perfectly capable of realizing when I am becoming overwhelmed in a negative situation, but put me in a situation in which I am enjoying myself and I won't realized how stressed and anxious I am becoming until I take a break or it's all over, and then I realize how much I overdid it.

I'm not sure if there's a good way to prevent this aside from taking scheduled breaks, which isn't an especially realistic solution. It's probably just something I'll have to live with: have fun now, crash and burn afterwards.

In any case though, last night just reminded me that while I don't have much difficulty now, and while many people are quite surprised to learn of my diagnosis (if they even know what Asperger's is), it reminded me that I am autistic-- even if my life is going well.

I'm sure this is an internal battle I will continue to have, my conviction ebbing and flowing depending on the day, my mood, and any other number of variables. I'm sure throughout my life, I will continue to feel like I am toeing the line between the "disorder" and the "personality style", never quite sure where one leaves off and the other begins. But then Science seems to be having that very same difficulty as well, so perhaps I'm just in common company.

[Sophist]

It's frustrating sometimes having abilities (talents, intelligence, etc.) but then having areas of definite weakness, to the point you're not just mediocre in something: you're learning disabled. --I have never been labeled as "learning disabled," but as I continue to go through life, I find certain categories of cognitive processing which seem to be deep valleys amongst my hills and mountains.

I am human; and therefore I realize I will not have a talent in everything. --No big surprise there. But in areas in which I excel, such as academia and particularly Science, when I run across one of my valleys of disability, I find it particularly embarrassing, frustrating, and even stressful.

This semester, my final semester as an undergraduate, I am taking two lab-based science courses. And I am finding one of the labs especially difficult. I am finding the lab too fast-paced, so that everyone is rushing around trying to fit in several experiments into a single period. Not to mention taking down the data, analyzing it, and handing in our lab notes. It is this last part in particular I am finding difficult.

The experiments in any given lab are usually somewhat similar (which is why they're grouped together). So all these instructions, these data, all these different variables, are all floating around in my head getting horribly mixed up. And by the end of lab we're expected to have made our tables with the data and the graph and hand them in all pretty and pristine.

This was only our second lab, but I finally couldn't take it anymore. Thankfully, I am registered with the disabilities office at my uni and so I went up and told the professor that all this was getting jumbled up in my head and asked if I could just take it home and make a spreadsheet and send it in to her. She was more than happy to oblige. I also made it clear to her that I'd likely need to do this every lab period, which she said was fine.

But I just left at the end of class in exasperation, despite that she said it was okay to take it home. Just frustrated, anxious, and even a bit stressed out so much that I could feel myself shaking-- having neared adult-tantrum mode. So I went and walked it off, trying to calm down.

But all that rushing around, everybody else seemed to know what they were doing and they were doing it, recording everything. Hell, they even had their tables and graphs set up before they began the experiments! --My brain just doesn't work that way. I'm a wonderful organizer and love organizing information and data. But I'm slow, thorough, and meticulous, not fast and hasty like the rest of the class seems to be. I'm the type who needs to sit back and THINK about what s/he's doing; get my mind around the concepts and the purpose, organize the variables in my head before making a representational form, like a table or graph.

It was just painfully obvious how slow of a thinker I am. --Don't get me wrong: I wouldn't have it any other way. I'd rather be slow, thorough, and meticulous than slapdash. But I certainly felt pretty stupid in class though. And my ego was definitely bruised.

[Sophist]

What is it like for an autistic person to be in a romantic relationship? In general, I don't know; I can only speak for myself.

I am currently in the beginnings of a new relationship. I am very happy, very satisfied. And in true autistic fashion (or is that human fashion in general?), I can't think of much else but him. Typical. My final semester of undergraduate, and it's become incredibly difficult to concentrate on my work-- though somehow miraculously I still am managing to pull out good grades. I wake up in the wee hours of the morning thinking about him and can't get back to sleep for hours. This has actually become such a habit now that my sleep patterns have adhered to this early morning waking.

And now, personally, I struggle with learning how to be close to another person. Not physically, but learning how to be mentally intimate. My entire life I have had friends, have had people in my life whom I loved, but there was always a distance, a mental wall between me and them. And now I want very much to be close to him, but I'm afraid I'm not very experienced with that intimacy, so it's all very new to me and a lot of work.

I try to be as open and honest with him as possible, even when it comes to sharing emotions and things which I would normally hesitate in saying; I feel it's important I reduce my emotional inhibitions, because that is how people become closer (this has been a LOT of work for me, so many inclinations to overcome). But what this means is that I need to already know what I'm feeling in order to be able to verbalize it to him. Which means that I usually need to have examined my feelings prior to the moment, having analyzed them and translated them into a communicative form. So I end up spending many hours analyzing myself. I plan things, things to say, things to do, because I'm not especially good at off-the-cuff interactions.

I wonder if he thinks I'm better at this "relationship" thing than I actually am, and what he sees is the result of much time planning and mentally preparing, rather than an instantaneous inspirational moment. In any case, it is a lot of work for me, though I very willingly give it. I care very much for him, and I want to be close to him. And if that means I have to take time to examine myself, analyze and then re-synthesize how I'm feeling so that I can share it with him, then that's what it takes.

[Sophist]

Now, my working memory isn't the greatest, largely I believe because multitasking isn't my forte. So it doesn't work so great when I'm not in a stimuli-reduced environment. However, my longterm memory (whatever manages to get in there) is excellent, particularly visual information.

I've been thinking about this lately mainly due to my current academic studies. I know not all auties have superior memory, or at least in a form that supports academic study. And so I am inordinately grateful that my brain has just worked out that way in my favor. But I notice many of the students in my classes, and it isn't that they lack intelligence to comprehend the materials, it's just that they can't remember them.

I know part of my book-learning memory is not just memory but is facilitated by good study methods, such as knowing how to organize information into a more cohesive whole making memory retrieval easier and more reliable. But when it comes down to it, there are many times I take notes in a class and I really don't have to concentrate too hard or go over them too much so that I can recall them for the test. **shrugs** But I see other people who struggle with this, because they can't still "see" the notes in their heads.

For instance, yesterday I had a dreaded chemistry test. I left feeling very confident about how I did, despite that I barely studied. While everyone else in my class is reading the chapters in the book several times over, doing the homework problems over and over again, all I seem to need to do is be in class to take notes, and when test time comes, I rewrite and reorganize my notes into a briefer form the night before or the morning of and, badabing, I remember. (Now of course this method alone wouldn't work with a professor who tested over MORE than just the materials presented in class. But for this situation, it's perfectly adequate for me in order to get good grades.)

This chemistry course isn't an easy course. But, I don't know, it just seems a little unfair that all I need to do is be in class, and do a little review come test time, while everyone else in class reads the book from cover to cover, does the homework problems over and over and over again, and studies for DAYS beforehand. And I still somehow manage to either perform comparably or even better than they do.

Not that, because I say it's a bit unfair, would I be willing to trade it. But I've just got my memory and my methods that seem to work:

* attend classes, pay attention, take notes
* studying for a test: reorganize & compress the notes (to facilitate learning), and then go for hurried rote memorization the morning of
* attempt to integrate the information into previously-known materials if possible
* visually remember my notes
* get a good night's sleep, eat breakfast, exercise, relax

**shrugs** It seems to work.

--Oh, and I NEVER stay up late studying for a test; I find that useless as it's just a waste of time my fighting exhaustion and not retaining the materials when I could otherwise be sleeping at the time. If, come my usual bedtime, I don't feel like I've studied enough, I go to sleep and just wake up a bit earlier.

[Sophist]

General opinions on how autism has affected your life, or those around you (family, autistic family affects you, you as an autistic person affect your family, friends, etc.).

Well, since I am autistic with or without a diagnosis, then the effect of "autism" has been pervasive. My brain is autistic and my brain defines my personality. So if A = B and B = C then A must equal C.

As far as the label and diagnosis, that has changed my life irrevocably for the better. Not only has it given me a framework in which to understand and interpret myself (which came at a time when I was in dire need of it), but having become part of the online community has completely changed the entire course of my life. I self-diagnosed back in the summer of 2004 and first began going to an autism-related chat called #asperger back around October 2004. This was my "birthplace" and also the creation of my long-lived (and sometimes regretted ) nickname. From there I went to Wrong Planet, stayed for some time, became a moderator, the entire website went nuts (along with Alex, the owner), and I handed in my notice and quit modding. Around that time, another WP member, Nick (known traditionally as Neuroman in various fora) had an idea and began the Neurolands Portal, with the idea of creating interrelated fora. Gestalt was one of these fora, but due to problems he and I were having with the management of Gestalt, I broke it off and moved the website to Lori's server and here we've been ever since. (This is the reason you see Neuroman as #1 member on Gestalt and not me. I didn't have access to his server, nor do I know enough about code, etc., to set up a site, so he did it for me.) Gestalt has truly changed my life and given me support I have definitely needed and continued to need.

I also used to frequent Aspies for Freedom occasionally (although not too often since the owners seemed to take a particular dislike of me ). But on one occasion back in the summer of 2006, I'd apparently exhausted all my posting powers on Gestalt and WP that I finally wandered over to AFF. And that's when I found Manny. Not only has the entire course of my career been determined by my diagnosis, but it also brought Manny into my life.

Anyways. The label has completely changed my life. Given me a framework, given me the added supports of online friends, completely changed my career path, and brought dear dear people into my life.

Academic/work life: Are there certain advantages or disadvantages you see because of your diagnosis/that of family or friends?

I've never found the label to be a hindrance. It's always been my choice to share it with people or not. And the label also offered me certain academic accommodations which I've found very helpful.

Is a professional diagnosis any better than a self-diagnosis? (As in, is there any sort of spectrum-within-the-spectrum of whether you see someone with a professional diagnosis as “officially” autistic?)

I think a self-diagnosis is good for some peace of mind. I think it can be a good thing in that a person, if they've self-diagnosed, tends to be more accepting of their autism, rather than battling against the utility of the label. But then one can't ignore some of the bonuses of a professional diagnosis: additional reassurance that you're "not just crazy", availability of certain accommodations that might not otherwise be available, and a greater willingness of other people to try and understand your situation.

For myself, whether someone is professionally- or self- diagnosed, I don't like doubting anyone's self-appraisal. But then, I also consider the Spectrum to be considerably broad, much broader than is currently diagnosed.

Social life: Do you have a small group of NT friends, many friends, only autistic friends, no friends? (Of course, internet friends also count ) Do you consider your family your support network/friends?

I have all my friends here of course. Irl, I have probably about four people I would consider good friends (one of those being my sig. other). Every single one of these people (online and off) is a considerable support for me. My mother is also an important part of my support system.

If a cure is found, would you be in favor of it? Do you think there can even be a cure?

I would want "cure" defined. I am all for improving happiness and quality of life. Nowadays, aside from my natural reservations of "a cure" simply because it hits a bit too close to home, I'm finding the concept of complete anti-cure to be a bit inane. I would want children to be happy and healthy. Do I think that it's possible to be autistic and happy and healthy? Absolutely. But then most of those who I think of as "happy and healthy" tend to be individuals in "higher functioning" ranges (for want of a better term).

I remember one time I was in the hospital back when I was a teenager, in the psych ward. And there was an autistic boy there. He was completely wheelchair bound, I think probably due to severe catatonia or maybe some other medical condition. He wasn't able to speak, though he was obviously cognizant, you could tell that by his eyes and the subtlest of his movements. I sat with him a few times; he'd want to hold my hand and I'd let him. He also liked digging his finger nails into my hands, so obviously the hand holding thing didn't last long.

I think autism can be beautiful. But who wouldn't want to walk? Who wouldn't want to be able to communicate to other people our needs, desire, thoughts, and feelings? I think some of the biggest reasons why many autistics who can speak but are miserable, are miserable in part because, despite having speech, we just have such a difficult time communicating with other people. We have such a harder time connecting to other human beings.

Do I think the answer lies in a cure? No, not really. I suspect that most forms of autism are inherently part of the human genetic continuum and so I think it would be almost impossible if not completely impossible to alter genetic expression to turn a severely autistic person into an "Average Joe".

I also inevitably have flashbacks to Jurassic Park whenever scientists try to play God with genes.

What do you think is/are the probable cause(s) of autism spectrum disorders?

Genetics plus various environmental effects that alter genetic expression and potentially determine severity (the uterine environment, learning, chemicals etc. in the environment, foods, support system/stress: all these environmental factors).

Do you see autism as a significant part of who you are, or of your personality?

See first answer.

[Sophist]

I've enjoyed my life. I don't look back on any of it in true sadness or regret. But these last five months I've realized how alone I always was. I've realized that, for all the people who may like or admire me, I never really felt close to anyone. Until now. And suddenly I realize what it's like to be human: to connect to another human being. What it means to not be alone, even though I never precisely knew I was alone. It's not even something I can liken to anything else I've experienced because I've never experienced it before. And for the first time, I realize a new kind of joy, a new thrill of contentment.

We are social beings. We're not designed to be alone. And when we are, something inside us, maybe way deep down-- maybe so deep we can't admit to it-- tells us that something isn't quite right, that there's a hole that needs filling. And we try many different things to fill it, sometimes vainly. But when we are able to fill it, when we do find another person to connect to, suddenly there's a different kind of satisfaction that no money, no career, nothing else can possibly replace.

And satisfaction like that is worth aspiring to, it's worth pursuing, it's worth striving for; it's not just the stuff of frilly poetry or romantic movies or love songs. It's one of the most real and serious things life can offer. And it's worth almost every sacrifice.

[Sophist]

A recent post here on Gestalt made me think about eye contact in autism.

In an evolutionary sense, the eyes hold a considerable amount of information. They are vital communicative tools and have the potential to produce a great amount of anxiety in the gaze-receiver. In many mammals, direct gaze can be an aggressive gesture, including in humans (although with the intricate subtleties of our nonverbal language, direct gaze can mean far more than just aggression). And even in some of the least social animals, they are still cognitively capable of identifying the eyes of an unrelated species. Ever noticed how your pets are capable of knowing precisely where and what your eyes are? They know when you're watching them and when you're not. And when you think about it, that's an incredibly complex neural template to be generated. It means that, for the most part, any unfamiliar animal you-- or your pet-- come across, you have a schema for "eyes" despite that you've never seen that creature before. In predator/prey species which usually involve hunting, chase, and capture, the eyes are vital to survival. The predator needs to know when the prey isn't looking at it, so that it can better take the animal unaware. The prey also needs to know when the predator is looking at it, when it is likely to charge, where the predator's attention is, etc. In social species, the eyes are even more important, providing an additional tool for communication and cementing social bonds.

So, eyes for many animals are fraught with potential anxiety. This is true for humans (notice how in some cultures, eye contact tends to be avoided more often with strangers than with familiars). Therefore, it should also be true for autistics. And since we autistics tend to take anxiety to an extreme, it makes some sense that we might take anxiety produced by eye contact to a greater extreme than our nonautistic counterparts.

Even within the autistic spectrum there is a spectrum of eye-anxiety. Some autistics have such extreme anxiety provoked by eye-to-eye contact that they avoid looking at the face altogether. Others have anxiety to a lesser extent and may be able to look somewhere on the face or make briefer glances at the eyes. Others may have overcompensated for lack of eye contact and take their correction to the extreme and make too much eye contact. And still others, I'm sure, have fairly average amounts of eye contact. Like I said, we're a spectrum where eye-anxiety may be more likely but is not a prerequisite for diagnosis.

For those individuals (myself included) who are capable of making general "face contact" but still find the eyes a bit too overwhelming or distracting, "mouth contact" may be an alternate gaze point. In my experience, humans are extremely sensitive to variations in horizontal (side-to-side) gaze but not in vertical (up-and-down) gaze. So if one were to look at the mouth rather than the eyes, which are in direct vertical line with one another, then most people can't tell that true eye contact isn't being made. Only until the vertical gaze variation is more extreme can someone tell; for instance, if I'm talking with someone and they're just a few inches from my face.

Autistics do seem, on average, to exhibit more "mouth contact" than nonautistics, as shown by eye-tracking technology. One study by Ami Klin et al. (2002) reported:

"Consistent with our predictions, individuals with autism focused 2 times more on the mouth region, 2 times less on the eye region, 2 times more on the body region, and 2 times more on the object region relative to age- and verbal IQ-matched controls. Effect size was greatest for fixation on the eye region, making it the best predictor of group membership. [...]

"We next explored the association between fixation time measures and measures of social competence. Contrary to our expectation, fixation time on the eye region was not associated with either social adaptation (VABS-E socialization scores) or social disability (ADOS social scores) [...] In contrast, fixation times on the mouth region and on the object region were strong predictors of social competence, albeit in different directions. Fixation time on the mouth region was associated with greater social adaptation (ie, more socially able) and lower autistic social impairment (ie, less socially disabled). Going in the opposite direction, fixation time on the object region was associated with lower social adaptation and greater autistic social impairment" (pp. 812-813).

One possibility is that those autistics who showed little "mouth contact" simply found the eye region too overwhelming altogether and were therefore reduced to looking more at objects, while those who looked at the mouths had less eye anxiety and so were able to focus in on the mouth more. The level of eye anxiety could be directly related to severity of the autistic phenotype: the more extreme the expression of autism, the more severe the anxiety provoked by eye contact. And also usually the more severe the expression, the less socially able an autistic is.

There's a lot of information in the eyes. It's hard to tell just how much a lack of eye contact detracts from social fluidity. Surely it plays some role, although how large is hard to tell. I.e., how much is lack of eye contact a direct cause of social difficulties and how much of it is simply correlated to the level of phenotypic severity?

In any case, having been on these online forums since 2004, it's obvious to me that many autistics have a difficult time with anxiety produced by eye contact, so much that we frequently avoid it to varying degrees. And, interestingly, the neural substrates that underlie this tendency are probably not new to autism, but can be found throughout primate evolution and resonate as far back as the early predator-prey terrestrial hunting relationships.

[Sophist]

I know we're all one human race, and I'm most definitely human. But there are times when I interact or observe other people and I just realize how different we can sometimes be. I don't know precisely if this is an "autistic versus nonautistic" thing, since I've met enough non-Spectrumites who feel the same way I do (although truth be told, I tend to consider those people a little closer to the Spectrum anyways).

I went to that charity dance last night with JNSQ. Not only was it a charity auction/dance but it was an event for autism, specifically for supporting FEAT. It started off with the silent auction, wandering around the items and eating appetizers, mingling with people, etc. Which was awkward. I didn't know anybody but JNSQ. At those sorts of do's, I inevitably feel conflicted, trying to find the balance between the "social face" and just being myself. Usually by the end of the evening the latter wins out. But I don't know, I just find all that fakeness rather nauseating. Inevitably, I end up being drawn to other people who likewise find the whole thing overdone.

After the appetizers, bidding, and mingling, JNSQ and I just decided to go and sit down at our table. There was hardly anyone in the ballroom so it was nice because we just got to talk and be "real" for awhile. And then finally everyone else came in and sat down. I had the good luck of sitting next to a mother of an autistic boy who was also wonderfully eccentric herself, so we hit it off pretty well, both lamenting over the fakeness of the occasion and talking about clothes (she's a garage sale person, I've traditionally been a thrift store type ).

There were some people there I'd label "down to earth", thank god. But many of the speakers and the presentations were pretty much "Let's help these poor kids, give us your money!" Not that money isn't important for supporting autistics and their families, it's just the condescending pity that usually gets to me. I could continually hear a number of women awww-ing and ohhh-ing whenever they showed pictures of some of the autistic children throughout the evening, which just rankles me to no end because it was those fake awww's and ohhh's. Compassion out of sincerity was sometimes missing last night. There were people there who were sincere. But there were others there who, I don't know, treated it more like the Charity of the Month thing.

Inevitably it's the women who bother me more than the men, because usually the women are the more expressive of their faux-pity while the men hold back more. ::sigh:: I don't know. I just like being REAL. I find it counterproductive to socialization if I try to express sympathy when I don't really mean it. It's not like people can't tell that you're just putting on a mask, so it doesn't fool anybody. And yet that's the practice.

Baffling.

[Sophist]

I don't even know what to think about myself anymore. I've tended not to proffer the Aspergers diagnosis much nowadays. I guess I have doubts. --Not doubts that I'm on that end of the human spectrum that's autistic-ish. Just doubts in the continued utility of the label. In many areas I'm doing extremely well and am able to overcome any tendency towards difficulties I may have had. Particularly in the area of socialization, where apparently I just don't seem very autistic-- at least to most people but my mother who knows my entire developmental pattern. But even my bf JNSQ, world ASC expert, thinks my diagnosis was a mistake and thinks I'm too social. Compared to him and our friend, Andy, I definitely am more socially able (although the amount of friends we each have is pretty equal in the end). But JNSQ and Andy are aspies too, and frankly they are crappier than I am with interpersonal stuff. But then they're men as well.

I don't know. It's just confusing. I see how my underlying personality is ASC. But then I'm extremely ASC-light and, what with growing up around therapists and in therapy, many of those self-modification methods have just become ingrained and it's sort of like I've been my own therapist; it's helped me overcome more natural destructive tendencies. For instance, I'm a naturally anxious person, and yet I know that the old "fall off the horse, get right back on" method is the surest way to prevent anxiety from becoming ingrained. So I just make myself do it. And utilizing physical distraction to stop repetitive thoughts in their tracks is helpful too. Lots of little methods along the way, lots of good people-- healthy people-- to model my actions after, an excellent sense of self-awareness: these have all helped me seem quite unautistic despite more natural tendencies.

Even some of my sensory issues I've worked to grow beyond. E.g., I have always had incredible issues with food sensitivities, particularly regarding vegetables. Basically anything that wasn't meat and refined wheat wasn't getting past my lips. But after my insulin resistance diagnosis a few years back, I purposefully worked to expand my diet by cooking and hiding finely chopped vegetables in sauces, etc. It took awhile, but I eventually started to like these foods, even eating them whole. Now there are many of them I love to eat in fact. But that didn't come naturally. Only my obsessive-compulsive fear over my health pushed me to the point I had the motivation to overcome many of my food sensitivities. But take a look at me now and my diet doesn't seem restricted at all-- I don't seem like I have food sensitivities. Which appears rather unautistic of me. But it wasn't for lack of the tendency, it was through a lot of personal work to overcome those issues.

Most people tell me that socially I don't seem autistic. I have a great sense of humor, I can be cordial and even entertaining, I don't go mute in conversations, nor do I appear overly anxious. Granted, I couldn't teach myself humor, that just had to come naturally, and the same thing with conversational chit chat. The anxiety though I've had to work to overcome, simply by forcing myself into said situations and just getting used to it. Like with making phone calls; I used to have a real phone phobia in talking to people I didn't know. But I volunteered at a crime victim advocacy agency a number of years back in which basically all we did was talk to strangers over the phone. The first two weeks of that job were hell, I was having panic attacks left and right. But after a week or so, the anxiety subsided and I got used to it. Even now I still have hesitation in calling strangers and advocating for myself (e.g., I had to call an attorney the other day and kept putting it off until later in the week for this very reason). But I try to make myself do it, because I know that usually once I get talking I feel fine.

I don't know. What with my research, I see autism less and less as any sort of discrete entity and just one tail end of the entire human bell curve. And I KNOW I'm on that end of the curve. But over the past year or more, I've found the label to feel more inhibiting than not, for this very reason: a discrete label cannot be incorporated into a bell curve because it's a full continuum with people inevitably falling between labels at any given time. So the question of a label becomes one of functionality rather than true accuracy. If the entire human race does actually fall on a continuum with autism at one far end, then there really is no such thing as "autistic" versus "not autistic".

But do I need the label anymore? It doesn't really change "me"-- although my self-diagnosis and later professional diagnosis has irreparably changed the course of my life for the better. But people think they have a very clear idea of what autism is, and regardless of underlying traits it's the people who can benefit from having the label that are deemed worthy of it. I used to need it, but I don't know if I'm "disordered" enough to need it anymore. I just start feeling as though I'm lying by using it. I don't have serious social issues, although I do still struggle-- but then doesn't everybody? I still struggle with my tendency towards obsessive-compulsiveness, but it's generally a winning battle. My sensory issues I still deal with, but the fact is I'm usually able to deal with them: I turn off the overheads at work if they bother me, I take a break if I'm too sensory-overwhelmed, and I'm finally in a close relationship that's become a sort of Sensory Integration Therapy for me when it comes to human touch and eye contact. Since being with JNSQ, I love looking in his eyes and this has, amazingly, made me more comfortable looking at other peoples' eyes as well.

I've been slowly making less and less use of the AS label and instead just coming to understand who I am as an individual. Even still though, I wasn't ready to leave it behind completely. --I wish JNSQ had kept his opinion to himself; I feel like, just by mentioning it, he's taken something away from me. I think he's wrong, but then I can also see his point in that I KNOW I don't look particularly autistic, especially compared to people who have more problems than I do. If he pictures Temple Grandin every time he thinks of a high-functioning autistic person, then no, I don't appear autistic. But being around him, he also sees me in the best light. I don't quite know how to explain it, but he's like Valium for me: I find JNSQ very calming and he just brings out a very relaxed, at-ease side of me. And that's what he sees. And of course relaxation tends to be the antithesis of autism.

When I'm with him, I'm very touchy-feely, very warm, very calm and happy. He just naturally brings that out in me. And I've never EVER felt like that before, with anyone. I was always very touch sensitive, humorous and cordial but more emotionally removed with other people. But with him, most of my standoffishness, most of my sensory issues and difficulties with physical and emotional intimacy, they all fade away-- so he doesn't see me as I've always been. So I know how I am, and I know how he sees me, the warm, sensitive, touchy-feely person. And I know why I don't seem autistic to him. The touchy-feeliness doesn't seem autistic to me either... but then this is completely new to me. I've never been like this before. I literally am shocked at how pleasant it is to be close to him. Shocked. And how good I feel when I'm with him. All my sensory issues seem to fade away, my anxiety, that invisible wall barring me from emotional intimacy, everything. Till I'm just left with relaxation and contentment.

But now I have the slight inclination to defend my diagnosis to him, like I want him to see what I see. He only sees one part of me, just because we've only known each other intimately for such a short time and we don't currently live together so as to be given the opportunity of also seeing each other's worst sides. But then I battle with myself as to whether I should even bother. Should I care enough to keep a label I myself was starting to discard? Is it actually worth it? The label doesn't make me who I am; JNSQ doesn't love me because of any label, he loves me because of me. But I guess I just don't want my struggles to be swept under the living room rug just because I've been so successful at hiding them. If I have a problem, I don't want to feel as though I need to hide it simply because I no longer have the larger protection of "Aspergers". I could foresee myself being less honest, asking for less help when I really need it without the protective umbrella of the label. I already find myself doing exactly that.