Saturday, December 30, 2006

A Maze Thing

I just saw this on a blog post somewhere and the right thing to do would be to post this there and thank the one who said it first. The thing is that I seem to be doing something wrong when I try that and thats EXACTLY what *THIS post is about. As soon as I figure out how to do something its automarically like I never had a time when I didnt know how.

First of all Im sorry that sometimes I say things about what difficulties I have when parents read my blogs.... and maybe hoping their kid grows out of what I havent. However, I may be able to help with solutions for parents of autistics and autistics themselves. Thats what I hope to accomplish with my blogging.

Second of all, what Im refering to in these cases may not necessarily have to do with autism or at least not all autistics experiece it.... maybe some autistics grow out of it.... The point is that this explaination makes so much sense and when those closest to me look at it this way we move forward....and when ANYONE tries to analyze the situation differently, everyone just stays frustrated until all of a sudden I figure something out....or I finally say something that someone finally figures out what Im trying to say.... or what is REALLY going on....and then the entire problem completely disolves like it never happened. I go from being esculated, frustrated, upset, spinning, styming, rocking....totally totally calm and all is right with the world.

NO, this is not a tantrum. I understand enough about pathology to understand that this is not a pathological thing and to put it in those terms is just absurd. Especially since the description I have, and the one that my wife and my mother has, of how this happens is totally dependable. If something works why mess with it?

Im not saying that this cant be improved upon and I want to do that more than anyone could imagine....but if calling it something else takes us off track and has never been productive....whats the point?

Let me explain. I know this isnt the same for all autistics but I have the worst sense of direction of anyone Ive ever met. Ive actually heard of autistic cab drivers. I believe it but that is so different than my experiance its very hard for me to understand. Maps and compass's mean nothing to me. This plays a BIG role in my life.

Here are a couple of examples. The first time I met my wife in person, I couldnt tell her how to get to where I lived. I could tell her the street address but thats it. We finally agreed to meet at a corner that was two blocks from my house and it took me an hour and a half to find it. My mother described it to me over the phone, I tried writing it down on paper, and still I wondered around for a long time before I found it. I had been living there for more than a year, it was two blocks from my house, and I had been there many times.

My mother has many examples of this when I was a child. Once we lived on a four lane highway. School was 15 miles one way with no turns and town was 15 miles the other way with no turns. I went to school five times a week and town twice a week. After living there for several years my mother said that I didnt know which way to get to either. Part of the reason may have been that when the bus picked me up to go to school, it was headed toward town because it had to go that way to pick up other kids that lived in that direction before we went to school. Also, it was a four lane highway and school rules were that we couldnt cross the street. That means that the bus had to be going in that direction to pick us up. The problem is that I was over 40 years old when I figured this out. This is just two of the many examples of this. I have often spent like an hour in a department store because I couldnt find my way out.

This is important because it happened yesterday. My mother and I spent four hours on the phone because I couldnt explain something and she couldnt understand what I was saying. At one point it got really scary because she couldnt talk to me anymore because she was so over whelmed. That feels very dangerous to me.

This became very apparent several months after I met my wife. It happens often enough that now she understands it but she still has trouble (as she says it in her words) "wrapping her mind around it".

The best way Ive heard it explained by autism specialist is "the difference between expressive and receptive language". In my case they have documented that in all the many cases of autism they have seen that mine is the most profound in that way. Ive heard it called" splinter skills". In my diagnosis it is described as a savant skill. In laymans terms Ive heard it called "talking in circles". Thats the term people have used to describe me all my life.

Heres the thing. Ill be trying to figure something out or trying to express something to my wife. Ill write it on paper over and over. Sometimes it seems to her like Im repeating something over and over....on a particular theme....sometimes for hours....sometimes days, weeks and sometimes even years. And then all of a sudden, I figure it out and all the confusion stops....I cant tell you what a relief this is! Its like all of a sudden I can breathe again.

Before I met my wife I always lived alone. I left home when I was 15 years old but I spent most of my time alone before that too. It wasnt until I met my wife that I ever understood this dynamic. If I was never around anyone, how could anyone (including me) know that I was trying to explain something that I couldnt. Before that, where was I that this problem would show itself.... or that I would even know how much it was a problem. I was never in school or a job for long enough for anyone else to see it.

I knew it was a real problem but I certainly didnt know how to explain it. I knew how much it effected my life but even if I had known how to explain it, who would I have told?

Often if my wife doesnt stop me and tell me that she gets what Im saying, I will keep saying it and writing it until she does. Even then, she has to explain what it was that I said for me to know what it was that made sense to her.

Before I met my wife I dont ever think I had ever seen anyone have an epiphany. I mean the look on her face after we have gone around and around on some theme for a long long time....and then all of a sudden....SHE GETS IT!!!! Its the most amazing thing Ive ever seen. Ive actually seen her break out into (literally) hysteracal laughter.... and then she says, "I get it." And then she has to tell me what it is she got. Its not that its funny. Its just such an emotional relief to finally understand what Ive been trying to say for so long. Once she understands its so simple....its hard to understand why it took so much time and effort.

Ive heard her tell this to autism specialist and social workers and the like....and they say they understand....and my wife and I both know they have no idea.... But you should see what they write about me later once they start to see what my wife is telling them about me. They just begin to understand it.... some of these people are autism specialist who have been working with autistics for years.... once they start to understand it, they react in all kinds of ways. Unfortunately specialist sometimes get really ugly when they see something they havent seen before and they are less of an expert on it. Sometimes they defend their professional pride in some really ugly ways.

This is frustrating sometimes but everyone has cross's to bare. This just happens to be mine. Ill deal with it. I always have. Im just hoping that some people will try and understand because now that Im married there are just some things that I have to be able to communicate and I dont have alot of choices in how I do that.

Right now Im trying to figure out this internet and blogging thing can work for me. I trying to figure out how to ask people but I havent found a way yet. (any ideas are appreciated).

Im having trouble accomplishing my goals and communiacating with people on the internet. IM STUCK! I hate being stuck but Ill get through it like I always do. But its like a maze. Once I figure it out...where the opening is.... it will be just fine.... until I get stuck again that is....but stuckness at a time.


At 12:00 PM , Blogger mcewen said...

the expressive / receptive language component is a big barrier to overcome when trying to communicate. the getting 'stuck in a loop,' is a variation of the same thing. Unraveling it is a challenge, but there are lots of people willing to try.


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