I Have Aspergers Syndrome

Well, it's been a long time since I've said anything here (mainly because I lost my password and no longer had the email address associated with this account). But now I feel this huge urge to relate my experiences with Aspergers Syndrome since I found out I had it about two weeks ago. I doubt anyone will read it, but I have to post this anyways.

First of all, I'm self diagnosed. The few people that I've talked to about this seem to think that unless a doctor says I have it, then I don't have it. I'm just looking for attention. While I don't feel like I'm looking for attention, at the same time, I want to shout from the roof tops, HEY! THIS IS WHY I'M WEIRD! So maybe I am seeking attention a little bit. Maybe this post is about proving I have it regardless. I really wish my mom were alive so I could dissect every little piece of this condition with her. I don't have any friends these days that I can spend hours talking about myself with. Haha. I also wish that she were alive so I could apologize for blaming her all these years for things that are clearly not her fault... now that I know it's the aspergers.


What Is Aspergers Syndrome?

Aspergers Syndrome is a mild form of autism. You are born with it. It affects the way you learn things and how you see the world. Some of the more obvious symptoms of aspergers is difficulties in social situations, delayed speech, avoiding eye contact, sensory issues such as being bothered by the way things taste, feel, sound, or smell, obsessions on certain subjects to the exclusion of other subjects that hold no interest to them, and the reliance of routines. Stress can cause an aspie (short term for one with aspergers syndrome) to either blow up disproportionately to the situation, or shut down completely such as going silent, hiding out in a bathroom until they calm down, or leaving abruptly.

Aspergers Syndrome is often misdiagnosed as ADD/ADHD and social anxiety, along with to a less extent, bipolar disorder, agoraphobia, depression, and many more. That's not to say that these diagnosis are wrong, only that these can hide the bigger picture, that the person has Aspergers Syndrome and all of these diagnosis are a result of that.

I'd like to take everything I've learned these last couple of weeks, and share my own experiences. This will be a long boring post. :P

Discovery

A few weeks ago, I was shopping for a 'summer read' in the book section of Target. A cute cover of a freckled boy caught my attention with the title "Look Me In The Eye" by John Elder Robison. I read the first few pages about his teachers or other authority figures telling him to look them in the eyes and thought, ha, I've heard that one before. It was about Aspergers Syndrome and Nadia Bloom had just been found in Florida so I bought the book.

Reading the first few chapters had me saying a few huhs. He was describing his childhood. I should have been clued in from the title, but it never occurred to me that I would have autism. So he said that when he would play with blocks, he would sort them out by color and it bothered him that other children would come in and mix them all up. I was definitely bothered by mixed colors. My games involved organizing the toys and then forming roads and parking lots with them.

On the playground, while most kids were interacting and swinging and hollering, I was sitting quietly organizing the rocks by the six different types they seemed to come in. This one is kinda clear like a crystal. These are see-through but stained yellow. These are chalky. Those are smooth and yellow, and these are black, rough and shiny. That one just doesn't belong. After all these years, I can still see those rocks clearly and the little piles I  made out of them. How I sat there and watched in amazement as a group of kids lined up and spontaneously started singing "Don't go chasing waterfalls, please stick to the rivers and the lakes that you're used to, I know that you're gonna have it your way or nothing at all, but I think you're moving too fast." By the end of the lyrics over thirty kids were marching across the playground. I sat by my pile of rocks and whispered the words then obsessed about the situation for days. I hoped that the kids would do it again and that I could run in and join them. Then maybe I would be normal.

Then the book went on to say something that has been bothering me for the last two years. "People with Asperger's or autism often lack the feelings of empathy that naturally guide most people in their interactions with others." The very word, empathy, is something I've been muttering to myself for months. I have no empathy unless it's that time of the month. Why don't I have empathy? I've got to pretend I have empathy. Why don't I care? He just said this, so think fast, what can I say that makes it look like I care? Like I have empathy.

I believe my brows started knitting together and I started reading more slowly. He said "The worst of it was, my teachers and most other people saw my behavior as bad when I was trying to be kind." I instantly recalled the hundreds of times when people have called me rude growing up, and not understanding how I could have possibly been rude. At some point I learned that if I just kept on smiling, people would stop thinking I'm rude. Then I heard so many comments about how people like me because I'm smiling all the time. Even if someone was screaming in a rage, breaking things, my head would be down and I'd have a slight smile on my face patiently waiting for the weird emotions of the other person to pass.

I looked up from the book and told my brother, "This is weird. I think I might have Aspergers Syndrome." He said, "What's that?" I said, "It's a mild form of autism. I don't really know, but this guy has it and everything he's saying about his childhood sounds just like me." He said, okay, and I kept on reading. Going through the book I started relaxing. I decided I didn't have it. Then I decided I might have it, then again, I didn't have it, and again, well, maybe I do have it.

Going online, I was assured I didn't have it until I ran across this video.



This video made me cry. It was me. I couldn't believe it.

She's talking mostly about the workplace but here are a few things that struck me...

• Aspies are honest. I've told lies before, like everyone, but I'm extremely honest with things like money, people's reputations, where credit is due, etc. If someone asks me an opinion, I'm not going to say I like it if I don't.
• We believe that if we just work hard enough, we'll succeed, but the reality is, working hard has very little to do with advancing and succeeding.
• Environmental sensitivity like being uncomfortable in panythose, with too much air conditioning. I could not stand having air blow on me as a kid. No matter how hot it was, I couldn't let the air blow directly on my skin. Yes, I do want the car air on full blast, please don't turn it off just because I made it point away from me.

And then she had a list of traits about women with aspergers being different than men with aspergers. I looked at that list and checked off one thing after another. Link About the only things that didn't apply to me were about outbursts when stressed out. I shut down or escape instead. I don't talk incessantly. I've learned to shut up and barely get a word in during any conversation. And I don't pursue relationships so nothing awkward happens there.

Useful Aspergers Links
Life With Aspergers
Help 4 Aspergers
Aspie Quiz
Also look up the phrase "I have Asperger's Syndrome" in Youtube!

I'll be quoting mostly from these sources to relate and recall my own experiences.

My Life With Aspergers

So now I'd like to go over a few more stories about living with aspergers. Reading about it has really opened my eyes about my own childhood and recalled so many things that happened because of it. Reading what others have said about it has made me really want to do the same.

One thing I keep hearing with aspergers is a reliance on routine. That is one thing I do not have. I can't stand routine. I always try to leave and return by different routes. I don't like sleeping in the same bed. Typically I'll sleep one way in my bed, add some blankets to make things softer and sleep that way, sometimes with lights on, sometimes not, sometimes with fans blowing for the noise and sometimes not, sometimes I'll go and sleep on the couch or the chair in the living room. One of my obsessions is maps and geography so I have no problem driving to the state line and then taking another route back, and if I'm confused, finally checking a map. I think one of the reasons this doesn't bother me is because I never actually grew up with a routine. My parents were divorced early on so I never knew where I would be going on the weekends, and if I asked what the day held, my father would ask why I needed to know. Maybe change is my routine. Maybe I have routines I haven't figured out yet. I've only been looking at this stuff for two weeks.

"Stims to soothe when sad or agitated" from the list of female aspergers traits. One time I was walking through the living room in my early teens and stepped on a tack. I said offhandedly, "ow", lifted up my foot and pulled out the tack. A friend of my brother's was over and said, "Woah! Was that a tack? How did that not hurt?" It did hurt. And I like it. So I started taking a tack when I was upset, dipping it in alcohol, and stabbing it into the palm of my hand or the bottom of my feet. About a year later I started wearing a rubber band as a bracelet and snapping it against my wrist if I became agitated. To this day, I still do that when I get really upset. If I can't find a rubber band I'll pinch and scratch my hands, scrape my shoes against my ankles, rub my legs with my knuckles while driving or rub the skin on my chest and face. If I'm feeling less agitated I often rub pieces of tape together or doodle geometric designs. I can't sit still to save my life.

"Prone to mutism when stressed or upset..." from the list of female aspergers traits. Conflict was difficult as a child. Every single parent teacher meeting my mother went to, the teacher would say something about my behavior and class and my mother would turn to me and ask me to explain myself. From that point on, I was a mute. No amount of threatening, touching, coddling, sweet talking, my mother's crying, or what have you would make me say another word until we were on the car ride home. And any questions about why I would suddenly behave this way were never answered.

Life With Aspergers, Aspergers and Eye Contact

Aspergers and Eye Contact


There's a lot in the literature about gaze-avoidance or lack of eye contact in Asperger's kids (and adults) but not really a lot from an Asperger's point of view.


What Practitioners and Parents Think
Frequently, it's left up to the reader's imagination to think of reasons - perhaps the child has just not learned that making eye contact is an essential part of spoken communication? Of course, this theory assumes that the condition is eventually treatable by training. It's consistent with the notion that eye contact does improve as the subject gets older but it's from a medical or educational point of view instead of coming from an Aspie.


[btw: apologies for my use of the term aspie - I'll use it through this blog in a familiar sense because it's difficult to keep writing Asperger's Syndrome. It is not intended to be derogatory in any way.]


An Aspie Point of View
Eye contact hurts.. no, not in the painful sense but it's quite uncomfortable. I always feel that I'm revealing more than I want to with eye contact and that I'm receiving more information than I want to know. Of course, I know that eye contact is critical to spoken communication, so often I'll compromise by either of two methods;


Method 1: Making brief eye contact every few seconds.
This is the "roving eye" technique whereby you make eye contact at the very start of each sentence and then drift away as soon as the person you're talking to is reassured that you're listening. There are a few problems with this method.


First of all, people often assume that your concentration is wandering. I'll often get told, "well, I know you're quite busy..." or "I'm probably boring you..." or "I can tell you're not interested..." as a response to using this technique when I really am interested in the conversation. When that happens, I usually have to switch to the other technique.


Method 2: Making eye contact for half of the Conversation
A two-way conversation is made up of two halves. Person 1 speaking while Person 2 listens and vice versa. As a general rule, people like to know that they're being listened to but aren't as worried if you don't make a lot of eye contact while you're talking. The plan with this method is to make reasonably constant eye contact (though you'll probably need to "flit" your eyes away several times during longer diatribes to ease the tension) while they talk to you and rest your eyes while you talk back.


As a partially deaf person I was encouraged to look at lips and I've become quite good at lip-reading. Unfortunately, as an adult, the lips are just too close to breasts and I often find that my female subjects will try to cover themselves during conversations. This is as embarrassing for me as it is for them.


I guess the best rule is to either stare at the face or (cheeks are a good idea) or slightly above and/or to the left or right of their head - never downwards or they'll assume the worst.


Overall, this is a more effective method than the "roving-eye" method but it doesn't work with everybody. In particular, you need to watch out for people who start turning around mid-conversation to see what you're staring at. If this happens, you need to either make more regular eye contact or switch to the other method.

I am a big fan of the roving eye method. Being a cashier, I've developed the smile, look in the eye and say welcome, look away and complete the transaction inserting a brief eye contact every thirty seconds or so, and then give another eye contact as I thank them before they leave. If they start talking about anything, listen, quickly find a question to ask about  what they are talking about, and repeat until they get tired of talking and leave.  If I have to sit opposite a friend, I've learned how to study irises and eyelids and so on so that it looks like I'm looking you in the eye, when really I'm thinking about drawing your eyes on paper. These are things I learned how to do so as to appear normal.

"May not have a strong sense of identity, and can be very chameleon like, especially before diagnosis" from list of female asperger syndrome traits. I have noticed this about myself. I don't seem to have my own personality. Any time I'm with a person, I start mimicking them. I start adopting their personality. I do this with tv shows as well. I adopt accents and phrases for a few hours and even think using the same voices I've just heard. I sometimes wonder if I'm being two faced and assure myself that I'm not when I don't adopt bad traits of other people.

"Parents of aspies often think that their children don't show Asperger's tendencies towards patterns. Sometimes, you just need to know where to look...

Example 1. My 7 year-old son seems to wander all over the place when we're walking in the shops. My non-aspie (NT) wife just thought he was mucking around but when I went with him, I immediately became aware that he was walking in patterns on the tiles. Since the coloured pattern zig-zagged across the shopping center and he was following it, he seemed to be all over the place." Link

I have always followed the patterned tiles as a child. It used to bother me if clothing racks and isles weren't placed just right according to the tiles. It also bothered me if I had to leave a pattern before it ended because Mom turned the shopping cart down another isle.

Obsessions or Pet Subjects

Aspergians tend to be interested in one to four subjects and have difficulty listening, learning, or watching shows about things that don't fall into their subjects.

I've had a few obsessions over the year. I've been obsessed with history and geography most of my life. I can't stand the dates, but the logical periods lined up and the stories contained within them have always fascinated me. If I'm following the history in one book, for example, I dislike learning about the entire history of one country followed by the entire history of another. I want to learn about the entire world by the decades. I want to be reminded about the past of each country as they get updated. Now if the countries are in their own books, I don't mind. But if it's the same book, I don't want them separated. Chronological orders are very important to me. That's one thing I disliked about the bible and one thing I absolutely love about The Daily Bible In Chronological Order. In geography, I love maps, but they have to be complete maps. If it's a topographical map, I want the topography of the ocean floor included as well. I dislike ancient maps. I want accurate, extremely accurate updated maps. If I'm studying, reading about or heard mentioned any name of a place, I have to look up the location on a map as soon as possible. I have a huge list of little obsessions on the title of this blog. Recently, I've taken up gardening and DIY projects as an obsession. The other day I got it in my head to make a table and couldn't wait for the weekend, I had to do it right then. So I bought some cheap poor quality wood, stuffed them into my car and that night and next day I sawed, hammered and painted my porch table. It's alright looking, but it will probably rot away in a year because I couldn't be bothered to wait for the weekend to borrow a truck and get some better quality wood that could be cut by a wood saw instead of my dinky metal saw.

I'll cut this post short for now but I think I may write a few more on the subject when the books I ordered get in.