aspie

don't tell me I'm broken

from my private blog on May 23, 2007

My psychologist wanted me to read anything I could find by Tony Attwood until our next visit, so I found The Complete Guide to Asperger's Syndrome at the library a couple of days ago. They say the guy is brilliant, and yes, he's a good writer, but it's such a drag having to go over stuff that I must have intentionally blocked out, and now I'm having all these miserable flashbacks from my childhood.

But here is a brief summary he wrote.

From my clinical experience I consider that children and adults with Asperger’s Syndrome have a different, not defective, way of thinking. The person usually has a strong desire to seek knowledge, truth and perfection with a different set of priorities than would be expected with other people. There is also a different perception of situations and sensory experiences. The overriding priority may be to solve a problem rather than satisfy the social or emotional needs of others. The person values being creative rather than co-operative. The person with Asperger’s syndrome may perceive errors that are not apparent to others, giving considerable attention to detail, rather than noticing the ‘big picture’. The person is usually renowned for being direct, speaking their mind and being honest and determined and having a strong sense of social justice. The person may actively seek and enjoy solitude, be a loyal friend and have a distinct sense of humour. However, the person with Asperger’s Syndrome can have difficulty with the management and expression of emotions. Children and adults with Asperger’s syndrome may have levels of anxiety, sadness or anger that indicate a secondary mood disorder. There may also be problems expressing the degree of love and affection expected by others. Fortunately, we now have successful psychological treatment programs to help manage and express emotions.

That's such a nice little nutshell. Now, let's see how I'd summarize the rest of the world, from my point of view as a child, now expressed through my adult ability to verbalize these feelings.

People of any age or size who pick on children who are different from them are greedy for power over others, selfish in their desires to force the world to conform to their own whims, and intolerant of any deviation from the way they believe the world should work. They have no imagination beyond the stupid little boxes their brains are contained in. Their obsessions with 'normal' and 'fixing' what's 'wrong' with other people show a lack of anything better to do in their own lives, and their inability to think about the consequences of their own actions beyond the next five minutes are mind bogglingly gauche. People who think pink is the greatest and yak on their phones all day have something wrong with them. People who are cruel to animals and little kids have something wrong with them. People who lie to their loved ones and self medicate have something wrong with them. People who go to elaborate lengths to get even with other people over trivial emotional issues have something wrong with them. So don't tell me I'm broken and need to be fixed. I live in a world of skewed humanity that I loathe to acknowledge, and I ache to escape it and find people who don't expect me to physically respond with a smile and a hug every time a holiday dictates that it's time to love each other. The horrors of having to constantly self monitor and never relax while I am surrounded by people who frown at every move I make are enough to make me want to run away from everyone for the rest of my life, and I can never tell anyone everything that is in my head because they're too dumb to understand that I'm not the crazy one, they are.

Please forgive me, on top of having Asperger's, I was raised by a mother with a very twisted form of Munchausen, and ignored by relatives who neither saw the truth of what was going on nor helped me survive it in any way. Teachers tried to get my parents to get me to a psychologist from kindergarten on up through high school, but I NEVER got help of any kind. Never. I survived my childhood because I was able to believe I was the one who was ok, it was everyone else who had something wrong with them. And that's actually one of the typical Asperger survival mechanisms, according to Tony Attwood.

So if I seem bitter, it was those last two lines. "There may also be problems expressing the degree of love and affection expected by others. Fortunately, we now have successful psychological treatment programs to help manage and express emotions."

That and being picked on and bullied in school all my life. Whatever this crap is about girls being less inclined to be diagnosed than boys because they are more capable of hiding and blending socially is just that-- a load of crap. My weirdness was so blaringly obvious that nearly every teacher I had either asked me how my home life was or tried to personally encourage my mother to get me to a professional. I attracted bullies and mean kids like a wasp trap attracts wasps. These are true incidences. A girl in middle school dumped stewed tomatoes off her lunch tray all over my white blouse and then tore my blouse grabbing me when I didn't respond. A gang of tough girls chased me around the school yard and almost right onto my bus the last day before Christmas vacation. A boy in high school broke my nose and glasses with a 90 mph dodgeball hit to my head. Want me to go on? The list gets pretty long. And if anyone says any of it was coincidence or just bad timing or whatnot, I NEVER saw another kid go through any of the stuff on that list that I went through. Not once. I saw bad things happen to other kids, yes, but not with the consistency and maliciousness of what I went through. Did my mom care? I stopped bothering to even tell her. Her response to ~any~ problem I had was to poke some more nasty junk down my throat. Sometimes I threw up, sometimes I got fevers, one time I finally figured out I was being poisoned after I broke out in a very sore head to toe rash (that didn't itch at all but hurt terribly) and had to think fast how to make my mom believe I was swallowing those special pills she had to special order through a chiropractor's wife (it was a toxic metal), 2 pills 3 times a day for two weeks. After one week, I really felt like if I took even one more pill I would die. I was 14, I was diagnostically considered to have a cognitive disability but no one was aware of it at the time, but I knew my mom was killing me and that if I confronted her about it, it would get worse, she would find someone to help hold me down and force me to swallow those pills.

I'm a big advocate of not 'fixing' the neuro-diverse. Help, yeah, that's fine. Not fix. You wanna cure me, you're gonna hafta cut out parts of my brain. If I survived emotionally intact (and I've tested out as 'emotionally healthy'), it's because I wasn't obsessed with my emotions to begin with. If I don't like feeling something, I don't dwell on it. I walk off and get involved with something else in my head. For me, that is a functional survival mechanism. They say Asperger's Syndrome is probably going to turn out to be one of the most common neuro-diverse diagnoses in the world. Well, maybe that's how humans survived millenia of really tough times. Maybe Asperger's is an adaptation to harsh and destructive social environments, because humans have been through wars and conflicts and government upheavals since civilization began. People like me don't die of ennui and depression. We survive it.

Ok, enough of that. I sound so aggressive, don't I? ha.

That post was written during my first month with a psychologist. He has been very helpful with several things since then, all of them involving how to better socially interact.

One thing I learned which was very helpful was that aspies are easy to 'lead'. When my doctor referred me to a neurologist for further investigation into occipital neuralgia, I came away frustrated that she completely bypassed my main complaint and tossed a prescription sample at me after only 5 minutes of quick questioning. My psychologist helped me break it down, and I can see now that I feel compelled to answer questions, no matter how off track they get, which can quickly make me look wishy-washy and like I'm trying to fish something out of the doctor. I realized I have been misinterpreted like this many times by other doctors, bosses, teachers, friends, and just about anybody I have to fill a form out for. I am unable to keep my focus on what I need because the other person interrupts me with a question, and next thing you know, we are meandering around a little forest of misunderstanding because I don't understand the dynamics of social interaction and why they are doing this.

I would never have been able to see this if it had not been laid out for me by my psychologist. After that visit with him, I was able to go back to my referring doctor and explain what happened and what my psychologist said, and asked my doctor if she would mind just handling my stuff herself. She was also disappointed in the neurologist for not spending more time with me getting pertinent information.

As aspies, it is important to learn things like this so that we can bring up our quality of interaction with everyone around us, especially professionals who are supposed to be helping us. I'm learning to tell people I have Asperger's. I noticed my dentist responded immediately by switching to blue gloves and lowering the light, which actually helped a great deal. I never would have thought that would have made a difference if I hadn't been made aware that I go into sensory overload from smells and light and noise.

The bitterness I went through last year is nearly over. I'm much more comfortable now with people. I am able to handle interaction without becoming defensive, and if someone misunderstands me I am able to laugh about it and quickly correct it before it becomes a problem. That's a tall order for someone who is supposed to be having the 'defect', but I'm in a position to intellectually understand that I have that defect, self assess, run diagnostics, and find solutions to the problem. My psychologist seems amazed that it's possible to be on both sides of the fence like this at one time.

I'm working really hard on learning how to be more social. No offense to anyone, but I really don't like it. I like people fine as long as I have a remote control in my hand, but I can't turn people down or switch channels in Walmart. I can't mute that annoying beep beep at the registers or stop people from asking how I am. I really don't want to kill anyone, but screaming children and ring tones push a big red hate button in me, and I have nothing to stop that sensory overload unless I'm wasted on a load of vicodin and muscle relaxers. I'm afraid anti-depressants are counter-intuitive with me, doctors pull me off those real quick.

I think it's great that kids can get help like this much earlier in their lives nowadays. I wonder sometimes how different my life might be right now if I'd gotten the help I needed when I was young. Some people are more kind and patient when they understand I'm challenged with too much going on in my head all at once and having to navigate through it just to interact with them. I would have appreciated having more kindness and patience in my life as a child.
- 10:52 am
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Synesthesia

I am so curious about synesthesia- do I have it?

I'm well aware some people see numbers and letters and music as colors. I've looked around the internet, and I've read a few books, but the most I see of synesthesia is that some people who have it are able to use it in a savant way or feel emotionally attached to or repulsed by something they see or hear that gets interpreted as color, using the color as the indicator.

I seem to be a bit backward. I see colors as places, locations, memories of having been somewhere (very not *here*), as spatial coordinates in a nonspatial universe.

For instance, when people might associate yellow with joyful, warm, and other positive emotions, I feel like it's a direction that I'm not facing, but I know where it is, because I can feel where it should be. When people see red as strong or angry or celebratory, I see it as behind me, below me. When people see blue as calm or deep, I see it as lengthy, flat, and in front of me. These are very basic descriptions, which get very very complicated as I go through hues and brightness levels, as if I could fine tune a place I am going.

The verbage in the above paragraph can be view psychologically as me having difficulty with joy, having my back to holidays, and being emotionless. It is very easy for people to anthropomorphize, and even easier for them to presuppose a cause and effect that doesn't exist if the sentence structure leads to that. It is NOT intuitive for people to understand what I'm trying to say. I'm not trying to draw a similarity to emotions at all with colors, those were just examples, and the 'directions' I see have nothing to do with those emotions. So don't make the leap there and psychoanalyze me based on something so shallow as what those sentences are.

Now I will get a little more complicated. I think it will help for you to visualize a stained glass window. You may pick any shape, and any colors and patterns you want for this visualization. But let it fill your vision, so that the stained glass is all you see. You don't see the light beyond it, and there is no room you are in. The stained glass is your whole vision. You are not standing there looking at it, you are part of it. It is a world.

Feel yourself sink into the colors in the glass, travel over the colors. See the different hues of blues and purples and reds and yellows. Notice that when you look at one color long enough, you can turn and look at another without lifting up off the glass to move over to it. You know it's 'over there', and you can see it and move toward it.

That was still very basic. If you would like a taste of what I see in my mind, let go of the glass. Now it's just color. There is no wall it shines on, it simply is. It is not liquid or air or solid. And as you go into the colors you realize they are very big and take up some sort of space.

At this point, some of you might be able to understand me saying that color has a topology. It's not just a surface, but an interactive spacial function. Wrinkles in the yellow produce a variety of golds and lemons. Flow in the green produces forest and seagreen and lime. Pushing or pulling on different parts of blue can make it navy or sky. All these colors can become more 'electric' when they are twisted (not literally), or more sublime when they are left alone.

Color also has a great depth of being. It is in a very big place. When I say I'm not facing the direction of yellow, I really feel in my soul that I'm not facing a particular direction, and before you aura enthusiasts jump on the 'reading', that is NOT what I mean. Color in my world cannot be interpreted as human emotion or motivation or action. Color is itself. It occupies a space, a place. The expanse is enormous, like our universe.

Blue in the context of this conversation also doesn't mean myself in relation to the distance and how fast I'm moving toward it, as the way scientists measure stars moving around on a doppler light shift. I know it's really hard to let all that go, but do it.

When I hear a strain of music on a certain instrument, it is an 'address', a particular location to a very specific color in a nonspatial universe, a real place in a reality that coexists with all of us. When I hear that music, I instantly see the coordinates of a 'place' defined in my mind only as color and know exactly where to find that color, down to the minutest hue and brightness. I feel there is a definite 'left' or 'up' or 'over there' to it. I feel like when a movement of music is pieced together, it is a map that tells us how to arrive to a location, and I see it all as colors.

Another thing about the colors is that although there are definite areas of blue and red and all the rest, there are much smaller areas where they can show up and either mix or flow with other colors. The closest way I can describe this, having studied the art of cartography, is elevation lines. The lines look flat on the paper, but they indicate depth, height, steepness, slope, etc. Or perhaps like a weather map that shows air flow at various elevations. Oceanographers might understand this as they study water traveling around the globe, sometimes mixing, sometimes moving other water over, sometimes just flowing past.

I know this is complicated. I imagine I could go on and on and bore some of you to death. But this is something I feel is important for some reason, and it took me many years to realize I've been seeing colors as places, locations of some sort. I felt as a child that I wished I could go 'into the blue' when I looked at a skein of royal blue embroidery thread. I feel like I've already been to red and yellow, but I loved being in blue the most. This life I am in now is about blue somehow. I am facing blue, it is very distant, and I want to go there more than anything else. Music only makes me wish harder I could really do this, because it gives me maps that I can't seem to understand with this head I am living in. I feel like my soul sight is blurry living in this body.

I'm not into new age studies, but I'm vaguely aware there are levels of existence. I'm also very into physics of all kinds and have harbored a suspicion of pan dimensionalism for years that goes beyond what we see around us (although I think this earth is pretty cool, and I love geography and geology studies). I feel like this 'me' is someone who's been around a bit, knows a few things, and has definite goals. I feel like these weird things I experience with my autism are clues that stimulate me to think more deeply than I might have without them.

I found a couple of youtubes I like to zone out on. They are deceiving because you feel like you are traveling someplace, but you are really getting smaller and smaller, but size and distance have no meaning, really. Maybe the universe of colors and locations is like that. By the way, I was picturing stuff like this in my head long before I ever found out about Mandelbrot sets years ago. Click the titles for the full screen versions, which look fantastic.

Fractal Zoom Mandelbrot Corner

Fractal Zoom Mandelbrot Edge
Self Awareness

Autism awareness is such a funny notion to me. One of the big perks of autism is not being self aware, at least until other people show you how you, too, can be a big bundle of nerves worrying about being stupid. But I think it's funny that April is Autism Awareness month, for a condition with limited self awareness.

I will never forget becoming self aware, oh so very slowly, over all the ages I have been. I 'wake up' to little things about the world or myself in little tiny spurts. I will never forget discovering a couple of years ago that there are other hand flappers in this world. Oh, there are people who talk with their hands or guys who have 'gay' hand moves or people who freak and their hands get involved, but I never associated any of that with me. But then I found out about Asperger's and read other aspies making jokes about flapping around when they got flustered, and it sorta dawned on me...

I was so surprised... Hey, *I* do that. Well, I don't go around flapping like a chicken, but when I get the least bit excited or upset, my hands go up, and sometimes I do flippy things with them, and sometimes they almost define my 'space' for me. I never noticed I do that, all my life. My mom was always telling me to stop it, or don't touch things, or be still, but she never defined it with specific details, so I had no idea what she was talking about. All I knew was that I embarrassed the crap out of her in public.

So you can imagine how odd I felt when I asked my sister, both of us in our 40's, if I'm a hand flapper, and she immediately grinned and had her hands up mimicking me.

That was a precious moment. I talk about being very suppressed by my mother to the point of holding rock still all day in school so no one would make fun of me, but I was free to be me enough at home, apparently, that my automatic behaviors were so common that no one ever brought them up or discussed them. No one had ever pointed out to me that I flap my hands, and no one had ever made fun of me for doing it. That was the first moment in my life that I realized 1- my sister loved me just fine the way I was, 2- I never had a clue this whole time that everyone in my family saw me as different and never pointed it out, 3- she obviously thought it was cute, because the way she mimicked me was cute, and 4- maybe that means it's ok not to have to hold rock still all the time out in public...

And you have to understand, when I don't watch myself, I really do get carried away. I flap my long sleeves around while I shop until Scott gives me The Look, and I instantly know that I'm getting so carried away that people can see me from halfway across the store. Sometimes, even at 46, I'm walking behind him in Walmart or a grocery store, doing a little toe dance to some elevator music or music in my head, bumping my knuckles in a funny little rhythm, and zoned out so far that I'm not even aware I'm about to run into someone. I actually once followed a guy I don't know because out of the corner of my eye the back of his jacket looked like Scott, and I'm pretty sure I creeped him out, doing my little aspie thing behind him. Scott was cracking up all over the place, waiting for me to 'come to', and when I did, boy, was I surprised. Woopsie...

When I was younger and the kids were small, I was very tense all the time because I had to self monitor everywhere we went (but at the time, I didn't realize THAT was the root of why I was so tense). I could never let down my guard. Now that they are grown and gone, I'm totally free to 'aspie out', as I call it, and I evidently really do embarrass whoever I'm with, or else they laugh so hard they about fall over.

A couple of years ago Scott wanted to stop into a Hallmark store to find a Christmas card for his sister or something, and I was so overwhelmed by all the candle smells and crowded fixtures and people milling around that I got a headache and totally zoned out. I found The Trail of Painted Ponies display and was in my own bubble, no one else existed, so absorbed was I in all the details. Scott found me and said, "Ready to go?", and I nodded and nearly floated over to the doors, almost in a trance while I kept looking over the ponies in my head. I felt a bump and stopped and very slowly came to enough to see a sign on the door, but it still took some time to focus before I realized it said "Use Other Door". And as I finally rejoined the world, I heard Scott behind me laughing so hard he was about to fall to the floor, and people were going around us with really strange looks on their faces. I guess I had rebounded perfectly off the door, just like a doll, and stood there like a robot staring, and I can only imagine that the people going around us must have either thought Scott was awfully mean or that something was dreadfully wrong with me or both, because those really were some strange looks. The funniest part for me was how Scott couldn't stop laughing, no matter how hard he tried. He smirked and giggled all the way to the car, even though he felt bad about it and kept giving me little hugs, but the truth was, none of it bothered me at all. I can see it from all kinds of angles looking back, and it still doesn't bother me. It just tickles me to hear people laugh like that anyway, and that was so much more pleasant than possibly being married to someone who might have called me stupid and berated me for it all the way home.

I like it when someone laughs because I'm such a dork. I don't try to be a dork, I don't even think about trying to make people laugh, but it tickles me that they laugh. Before I found out I have Asperger's and I was trying so hard all the time to hide being 'stupid', my feelings were more easily hurt, but I think it was because I didn't understand exactly why. Now that I know about the Asperger's, I no longer care if people think I look 'retarded' (I've been called that). I personally think it's cute seeing other people zone out like I do, especially kids.

Don't worry, I don't do it in traffic. And in spite of sounding so bubble headed with this story, I can sit through a two hour lecture or sermon and hear every word while others around me nod off or go to their happy places. When Scott is looking for a bolt in Lowe's, and if you've ever looked for one bolt in an aisle containing millions of bolts, you know what I'm talking about, I'm able to go right to exactly what he needs before he does. I can do this with information, even if I'm completely unfamiliar with it. I can sift out everything I don't need in seconds, filter it down logically to a system, and find a set of numbers describing size or indicating placement, and voila, there it is. I can sift through tens of thousands of words and tell you what a document is about in less than 30 seconds. I just can't make it through Walmart without spacing out by the pickles and doing a little aspie hand dance while I appreciate all the creative work that went into designing the labels...

~~~~~~~~~~~~~

Total change of subject now. I've mentioned I'm a rather asexual person, and yes, I have had more to say on the subject. So if that caught your attention, have a ball. This is me, looking back on my life and figuring it all out in some articles I wrote. You'll find other links within those articles, too.

aspie and the ’male mind’ thing
pan gender
Izzard Love- January 24th post
(Thanx muchly to Eddie Izzard for making it so much easier to talk about this kind of stuff, breaking so much ice and all that. )
(Sorry, those are gone now. Myspace problems, etc.)

Before I leave this subject again, I'd like to define it with saying I grew up partially Mennonite, from my dad's side. I come from very practical people, 400 years of traceable ancestry that finely tuned their minds to problem solving, which was fortunate because they built one of the nation's top 'bread baskets'. I am very aware that discussing sexuality issues can be very upsetting for some Christian (and other) groups, but my approach, as you can see in the above articles, is from the sort of mind set that will take the time to think, test, observe, and discuss. The things I write in those articles are not based on emotional whim and cultural fashion, but on a lifetime of observation and logical conclusion, and in my case, actual tests.

If anyone who runs across this is curious which group I come from, my dad's family was of the Alexanderwohl Mennonites. One of these days I'll find a way to scan and scale down the big map I made in a cartography class that details the migration since the 1600's, which I contributed to one of the museums.
- 12:38 am
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bluejacky

I've started transferring my survey posts over to Surveypalooza so people coming in from search engines on mobile devices will be able to see the surveys.

Apologies for the missing vids, another upgrade during the server migration swept through like a scan sweeping through the Enterprise. I'll fix those later, kinda busy...