One autistic broad's take on all kinds of stuff -OR- What the world smells like when your nose is this big

Friday, November 19, 2010

November 19th, 2010

The problem with sharing the thoughts and experiences I've had over the course of my lifetime, is that it gives me some serious anxiety. I'm really afraid to come off looking like a loser, or a freak, because I've put so much energy into blending. But the whole point of starting this thing was to tell the truth about my life as I know it--and in some eyes, freak may be exactly how I'll look. Talking about "it", whatever the "it" of the day turns out to be, is the best way for me to show my experiences are perfectly normal, even if only to me.

The struggle to keep a roof over my head since I was seventeen hasn't been an easy one. I'm a trooper and learned to fight pretty hard to keep it all together without complaints. For all the years of people looking down on me or thinking I was lazy or crazy, I don't have the words, I think, to explain how little that noise helped the situation or made me want to try harder, but I'm going to explain it the best I can. I do fear that I'll also come off all "doom and gloom" when writing these long rants and face the "get over it" perspective from others, but the reality is, things have always been incredibly hard. I don't look at my situation and want pity from anyone. Pity makes me angry and it isn't the point at all. I only want to share the struggles I've endured because I know other people are experiencing them, too, and admitting to those struggles can help everyone understand them, not only the Autistic person.

 Had I been diagnosed with HFA back in the 80's, or even with Aspergers in the mid 90's, I'm sure the course of my life would have been different, if only a little easier to navigate. The percentage of diagnoses between men and women is pretty unbalanced, but there may be reasons for that other than the actual disorder itself. A woman who's perceived as shy and disinterested in social events doesn't stand out the way a man does in today's world, where eye contact and interaction is expected. Abuse in relationships shares the same problem. While boys are expected to join in and be decent at team sports, girls typically aren't, so the existence of dyspraxia is also easier to detect in males. If you ask me, there's an incredible imbalance in detection due to societal gender roles and stereotypes. There are going to be people who say I was better off because I was able to get by with some of those traits without standing out, but the opposite is true. It prevents a person from getting the answers they need and a diagnosis that can be critical to moving forward.

I've had serious low points in my life--sleeping on friend's couches and even staying in homeless shelters when things fell completely apart. It's been years since I've had to deal with those problems, more than a decade, but it wasn't easy to get where I am now and I haven't done it alone. Employment has always been hard to keep a handle on. There are a handful of jobs I was fired from when I was young, but the majority I quit (by simply not showing up) after the anxiety, paranoia, and frustration became too much for me to handle mentally. I've also been in and out of college more times than I care to admit, but I've always tried, and kept trying. That's the point of the experiment, I guess, to keep fighting, because nothing good can really happen if you're not reaching for it.

The truth is, I am not a quitter. Nor am I a victim and wouldn't ever want to be seen as one. I'm a person who has a highly limited ability to deal with the the everyday things that happen outside the four walls of my home--that's simply life as I know it. The world isn't "out to get me", even if it can feel that way when looking at the long list of basic expectations a normal life entails. I will never stop trying to meet those basic expectations, nor will I point the finger and pretend it's everyone else's fault if I fail. Whether or not I succeed or fail will be a direct result of the brain I was born with, and that responsibility lies on no one. Accepting failure as some sort of flippant personal choice I made isn't going to fly with me because I want desperately to succeed. My very best is all I can be expected to give--and however that turns out, well, it's what little old me and the world gets.

I think the lack of resources for adults with Autism is something that cripples many people before they can ever take flight. It's not too much to say there are adults that need help managing daily life and their inevitable breakdowns when they don't get that help, because getting by can be too hard without help--I can admit that shamelessly. The focus on school age kids and early intervention is fantastic when there are services available, but much of the time a diagnosis and therapy run financially in the thousands. There are people out there not getting the desperate attention they deserve because they don't have the dollars, or they're just too damn old to be bothered with.

For the record....I am not a lost f*cking cause and I resent the fact I'm seen as such by the powers that be.

*Ahem*

Anyway, moving on. The only reason I don't live in a cardboard box right now is because I wound up married with a few kids, then divorced, and have a hard working ex-husband who's been downright admirable for making sure we're all housed and fed and happy. As much as we struggle to communicate and he gets on my damn nerves, he's also a hero of sorts. Before I had children, I could manage work and bills and the basics. After I had children? No way. There are loads of single mom's who go to work everyday, bundle up the kids and take them to daycare, fight traffic, slog for nine hours in some factory or office, then pick up the kids, feed them, do homework, clean the house, do all the laundry, the list just never ends.....they're heroes to me as well. I can barely get through most days and I seldom leave my house. There's already a low level anxiety about where my life will take me when my kids are grown and (hopefully) off to college. I envision a small apartment and a quiet nine to five and a cat and evenings spent reading. That's about the gist of what I can pull off when I look at my future from where I stand today.

It's the reason I have such hope that finally getting an Aspergers diagnosis can begin to change things for me as new realizations about my nature open up to me. I don't want to do what I do now! That's the biggest misconception--that I'm somehow content to be in my cave all day and I don't need or want anyone around me, and, "Oh, well, lovely cat you have there."

It's so untrue! I crave people. I just seriously suck at relating to them and sustaining friendship. I seriously suck at having to leave my house everyday. Hell, I spend three days gearing up mentally to walk to the post office. I can't begin to tell you what a toll that takes on a person's ability to manage their life. My mother used to tell me how my grandmother spent most of her life inside her kitchen, smoking and singing gospel songs, staring out the window. Part of me believes her life, like mine, was a prison. And for most people, breaking out would be as simple as walking through the front door. So I completely understand that it's hard to envision me as "trapped," but I do feel that way most days, and yes, it sucks giant heaps of dirt. Hope, enough hope that I can somehow bend the bars and squeeze through enough to feel some wind on my face, because I found out why I tick, came just in time to keep me from throwing in the towel altogether.

I recently remembered I'm fighter, and I have no intention of taking the blasted gloves off.

Thursday, November 18, 2010

November 18th, 2010

I had to take a break for a couple days. It seems I wrote myself into a corner and had to shake it off. It's not so hard to think about the stuff I want to say in this blog, but it's fairly exhausting to put those thoughts in some kind of coherent order and use the right grammar, punctuation, etc. The same things happens to me when I write fiction. Things seem to go along smoothly for a month or two before I suffer from random burnout. When that happens, even looking at a manuscript can give me a negative physical reaction and I can't seem to face the idea of typing a single word let alone a sentence. It can take an entire month for me to get back in the groove.

I'm used to the waves by now. Balance is practically non-existent in my life. I usually don't eat anything before noon or 1 pm. Reading signals from my body is a complete crap-shoot. I can sit down to write something or surf the net and by the time I look up, four hours have passed, I'm practically dying from bladder torture, my throat is dry, I could use a snack, my spine hurts from heavy focus and not moving around. It's a real mess...lol. I can drink two pots of coffee before lunch and forget to eat anything. I'll stuff myself in the afternoon and forget to drink any water. And people wonder why Aspies suffer from stomach problems? Pssh. No surprise here. The really frustrating thing is I know I do it. I just can't seem to think of it in those moments to correct it.

One of the problems I seem to be having the last few days is acceptance of all these idiosyncrasies of mine. After two really bad days of unexplained depression and hopelessness, I picked my arse up off the sofa and went to the library to get my first Aspie book. The introduction from Michael John Carley brought tears to my eyes. There was nothing particularly emotional about what he was saying, it's just the similarity in our situations that struck me. He recognized his symptoms while trying to get help for his son. The same thing happened to me. He had a hard time accepting it, to the point he took a 5 day vacation alone to surf and watch people. I completely understand how facing an Asperger diagnosis can force a person to step outside their situation.

As much as I believe having an answer is a real saving grace for a person who has an Autism Spectrum Disorder, there are other things that go along with finally having those answers to the why's in their life. While the experience is different for everyone, I realized, just yesterday, that the sadness I feel is related to the fact I'm going through a grieving process. Since I started this blog a couple weeks ago, I've been thinking about "it", talking about "it", and all of my anger has bubbled back to the surface.

When I was told last year that I had AS, I thought, "Cool, that explains issues A thru W." But afterward I took three steps back and went on my way, back into my life, my world. There was a certain amount of denial there I wasn't aware of. Accepting that diagnosis, really admitting it in my core and knowing there's no "fix" makes me spitting mad. It's as though I have to admit to myself that my hopes of being normal died and they were cremated and there's no bringing them back. That's not easy for me. I'm not the type of person who can't solve a problem, so wrapping my head around the fact that it's permanent is stressful. Sure, I can find ways to deal better with the negative aspects, but I'll never be anything but ME. Aspergers is not separate from who I am, it is who I am and I have no choice in the matter. I have to spend my entire lifetime experiencing the world differently than other people get to, and yes, it really does chap my ass, because I never asked to be different.

This paragraph from Aspergers from the Inside Out really struck a chord with me~

My movements were slow, more careful and methodical than others', relaxed in contrast to the bodies whipping back and forth. Yet, oddly, few people bumped into me, and I began to feel like a ghost that no one saw. I walked the room, climbed up to the many floors, and viewed the ground-floor scene of tourist masses from many vantage points. All the while I was slowly taking mental notes; notes that weren't as smugly jotted down as they'd been in the past. For as I watched the dictionary of non-verbal communication flowing back and forth, I was hit fully, finally, that what separated me from them wasn't cultural. It never had been. It wasn't intellectual. It never had been. It was bigger than that. Staring into that sea of abandon, I knew.

I did feel something similar to that before the psychiatrist ever said, "Yes, you do have Aspergers."

I've felt something similar to that in countless moments that span thirty-seven years. I love it when people roll their eyes and say, "Every kid feels different, every kids thinks they must be adopted or an alien." I dare say it's not the same thing a person with Autism feels. Sometimes, none of us feel like we belong. Sometimes, we all get confused. But knowing in your core being every second of the day that you are not like those people, is different from what the average bear experiences. It's not lack of belonging, it's a factual separation.

So yes, I think it's probably pretty obvious I'm stuck in a grievance pattern. I've gotten past much of the denial, but I'm still dealing with the anger, bargaining, and depression that comes with finally accepting it all. I'm looking forward to the kind of acceptance that's free of negative emotions, and I think the best thing I could have done for myself was start this blog, get reading materials, and decide to make some sort of plan for my future (though it's definitely in the rough draft stage). This all feels akin to the first step in a treatment program, because I have to admit I'm powerless to change what is, I can only work toward living my best life knowing that I am never more than a few stages from a meltdown--but it can be managed if I try.

One day at a time, right?

Monday, November 15, 2010

November 15th, 2010

 *Discovery Criteria for Aspies by Atwood and Grey*

Lest certain things be misunderstood, such as "A qualitative advantage in social interactions," remember to keep these things in context. He's not talking about blond cheerleaders. I've added short answers as these apply to me.

A. A qualitative advantage in social interaction, as manifested by a majority of the following:

1. peer relationships characterized by absolute loyalty and impeccable dependability
*Absolutely, in my case.
2. free of sexist, "age-ist", or culturalist biases; ability to regard others at "face value"
*If a person is interesting, I could care less if they're from Alpha Centauri or have three eyeballs.
3. speaking one’s mind irrespective of social context or adherence to personal beliefs
*I'm certainly not one to follow a hive-mind perspective or join in mob thinking. I do have a tendency to say the type of thing other people may be thinking, but won't say themselves.
4. ability to pursue personal theory or perspective despite conflicting evidence
*I often look at things from all angles, and can appreciate information that doesn't match my position.
5. seeking an audience or friends capable of: enthusiasm for unique interests and topics;
*Absolutely true. I have a hard time with people who share nothing in common with me.
6. consideration of details; spending time discussing a topic that may not be of primary interest
*I do get fascinated with tangents.
7. listening without continual judgment or assumption
*Also absolutely true. I need the whole picture before I decide how I feel about something.
8. interested primarily in significant contributions to conversation; preferring to avoid ‘ritualistic small talk’ or socially trivial statements and superficial conversation.
*I live for intellectual discourse and debate, and suck at the, "How have you been?" portion of conversations.
9. seeking sincere, positive, genuine friends with an unassuming sense of humor
*This is true for most people (I assume), so yes, of course.


B. Fluent in "Aspergerese", a social language characterized by at least three of the following:

1. a determination to seek the truth
*Almost compulsively, and I'll keep asking questions until I have the closest thing to it.
2. conversation free of hidden meaning or agenda
*I abhor playing games with people--it's incredibly annoying.
3. advanced vocabulary and interest in words
*I believe this applies to me, yes. I've always had a wide vocabulary, I just had to learn how to use it.
4. fascination with word-based humor, such as puns
*I'm inclined to be laid back concerning puns?
5. advanced use of pictorial metaphor
 *The world really IS a stage.


C. Cognitive skills characterized by at least four of the following:

1. strong preference for detail over gestalt
*Things that are difficult to clearly define frustrate me to no end!
2. original, often unique perspective in problem solving
*Absolutely! And often very efficient.
3. exceptional memory and/or recall of details often forgotten or disregarded by others, for example: names, dates, schedules, routines
*Absolutely--I also remember things no one in their right mind would have cause to remember.
4. avid perseverance in gathering and cataloging information on a topic of interest
*This is me to a fault.
5. persistence of thought
*When I'm anxious it's the worst, it becomes almost obsessive.
6. encyclopedic or ‘CD ROM’ knowledge of one or more topics
*I tend to be a generalized know-it-all, but I definitely have strong areas of interest.
7. knowledge of routines and a focused desire to maintain order and accuracy
*I'm very rigid in my expectations and what goes on in my surroundings.
8. clarity of values/decision making unaltered by political or financial factors
*I have a very strong sense of ethics/morality/justice and it seldom bends.


D. Additional possible features:

1. acute sensitivity to specific sensory experiences and stimuli, for example: hearing, touch, vision, and/or smell
 *Yes, yes, yes!
2. strength in individual sports and games, particularly those involving endurance or visual accuracy, including rowing, swimming, bowling, chess
*Mine happen to be Swimming, Golf, and Darts, etc. but I really concentrate. I certainly stink at team sports.
3. “social unsung hero” with trusting optimism: frequent victim of social weaknesses of others, while steadfast in the belief of the possibility of genuine friendship
*Sadly, this is very true. I don't tend the good relationships I should and often find myself in bad relationships far beyond their expiration date.
4. increased probability over general population of attending university after high school
*Should have been, had my social and introversion issues allowed for it.
5. often take care of others outside the range of typical development
*Also true--I'm a sucker, it seems, for people who mismanage their lives because most of it seems so simple to me. I think, "If you would just (insert decision/action) things would be so easy." I often have to remind myself not to be concerned with the lives of others and focus on where MINE isn't working. I've learned most people are going to do what grooves with their personality/history no matter what you say to them, so it's a lot of wasted energy on my part.

Sunday, November 14, 2010

November 14th, 2010

Music is one of those "noises" that keeps me sane in my everyday sludge. It's a real lifesaver when other sensory input overwhelms. As I write this blog, I'm reminded of last evening~ I was sitting at my desk trying to read something online; Sponge Bob's voice flowed from an upstairs TV, my daughter tapped a pencil on a pad of paper behind me as she did her homework, a dog barked a block away, a car passed every couple minutes, the fan in the PC whirred, the refrigerator kicked on...

Most people can drown out everyday sounds such as those as they become accustomed to them. I cannot do that ever for any reason. Every once in a while I think about J.K. Rowling locking herself in a hotel room to finish the end of HP 7 and Oh My God do I ever understand why that could help a person complete a project. Those noises I hear don't combine to create something pleasant the way music does, obviously, so the choice for me is an easy one. In those times I'm wanting to concentrate, the ear buds have to go in and the iPod goes ON. The singer is little different than Sponge Bob, the drums are the tapping pencil, the chorus similar in cycle to the cars, but it has a totally different effect on me (as it does on just about anyone else), and it's essential.

As with most things in my life, I have very narrow interests in music, and each individual artist I like represents a particular year and state of being. The only album I listened to for the first six months after it released was Pearl Jam's Ten (It reminds me of bullying and neglect). In 1994 it was Green Day's Dookie (Spite and rebellion), and six months after that I picked up Nirvana's Nevermind (Utter disenchantment, all the way). I still listen to those three albums on occasion, but very little else that came out around that time. Entire albums represent an all encompassing picture and clicking-slide-disk of memories, sort of a definition and list of snapshots on whatever "section" of life I happened to be dealing with at that time--also defined as a particular developmental level, I guess. I'd be bothered by the amount of science I apply to it if I thought for a second it lacked emotion, but for something that can be charted and graphed, there's nine tons of invisible feeling where the lines should lay.

From age ten to age twelve I had Michael Jackson's Thriller (I certainly sensed his fear of others back then), Cyndi Lauper's She's So Unusual (Innate strangeness), Phil Collin's No Jacket Required (Unapologetic sense of humor), and nothing else unless it was a one hit wonder on the radio. At fifteen and sixteen, It was Guns and Roses Welcome to the Jungle (Shameless violence and drugs (curiosity at that point)) and  L.A. Guns' Cocked and Loaded (Melodramatic depression and stage drama). At seventeen it was Danzig's self titled album (Vengeance, futility, and little else)...and on and on that list goes.

I can't pretend to be a music aficionado in any scope of the word. While I have 17,000 songs on my PC and know a lot of information about various bands from the 80's and 90's (it's a compulsive collecting issue, as with DVD's I'll never watch more than once, or books I've never read but have to own, etc.), I listen to only ONE artist regularly--and that's Sting.

I wouldn't say I'm obsessed. When you talk about unrealistic schizoid issues, this girl ain't guilty at all. If I met the guy, I'd certainly want to shake his hand and say thanks for the music, but I wouldn't expect to be his pal or want a lock of his hair. For whatever reason though, when I first hard the song Syncronicity ll way back in the early 80's, I latched on for dear life. It could have been the lyrics that got me...

Another suburban family morning
Grandmother screaming at the wall
We have to shout above the din of our Rice Crispies
Can't hear anything at all

Since then, I've gone on to collect every album in both The Police and Sting's discography. I even have foreign editions and bootleg studio recordings and various concerts. I've heard each one of those songs thousands of times and never tire of them. Often when I'm writing fiction, I have to play either On a Winter's Night or Mercury Falling. They're the only two albums I can concentrate to (for the last year)--every other song in the Universe in those moments would normally be an utter distraction. If I don't play Best of the Police when I clean my house, I'm slow as a slug or reluctant to do anything at all.

Stranger still, every album I listen to has a few numbers attached to it. If on a Winter's Night plays at volume 15 and is around 51 minutes long and was released in 2009. Ten plays at volume 16 and is close to 53 minutes long and was released in 1991 . Nevermind plays at Volume 18 and is about 42 minutes long and was released in 1991, etc., etc., etc.

There's no way on God's green Earth I'm going to be able to explain why that is. I'd have to be able to explain it to myself before I have any hope of letting another person know why or how that particular quirk evolved. It just IS to me, and it's perfectly normal from where I sit. There have been many occasions I've had my feelings hurt in various blogs or chat-room comments because I am so one track mind about it. Some people don't understand that narrowness of interest, or the tunnel-vision I experience fighting my way through each and every day. And the good news is, I get over it pretty fast because I don't expect anyone else to understand how I operate. Really, how could they unless I ran around whining about me, me, me all the time?

I realize the cyclone of information that twirls around inside my head whenever I approach something would probably sound exhausting to other people if I described it, and it really can be sometimes. There are days I fall into bed at night and could almost cry because it's finally dark and silent and it's just what I need. There are other days where life is overwhelming right from the jump and I hide away for hours in a room with a laptop and a good book. Again, I know no other way of being so it's something I have to deal with. There is a constant battle that goes on inside my head over what I think is "normal" and what isn't. It's a coping mechanism that allows me to be perceived by people I meet on the sidewalk as "just like them".

One of the reasons I like the radio on occasion, is that each song I've heard over the course of my life recalls a distinct time and place, even a smell or emotion. It allows me to step outside of the moment I'm in and wander off into my history and "my world," which can be an immense stress reliever. Strangely enough, the only time I break out of my routines and do something different (like turning on the radio or listening to 'Madama Butterfly' rather than hitting the same button on the CD player) is when I'm over stressed and I've exhausted my go-to-list of usual chaos blockers. Songs can be akin to reading a book--a grisly haunting or an eastern beach, depending on what a person needs--because a good song will tell a story before the last beat rolls around. Sometimes, not making sense makes sense.

Music can be a lifeline, a friend, an aspiration, a nemesis, an art, a science, an emotion, a million other things....to absolutely anyone, not just this girl.