Living with Autism: Don't You Know It's Rude to Stare?

Not a question asked to me, but a question I ask in response to people demanding I look at them when they talk.

Eye contact. Why do I need to be looking at you to hear what you are saying? I hear with my ears not my eyes. Why do I need to look at you to talk to you? I talk with my mouth not my eyes.

My lack of eye contact, my inability to speak around strangers, and my cloths, resulted in leading to my finding out I had Asperger's, when in 2005 I was summoned into court as a witness to some case which I had no idea why they were saying I was a witness too. I'll recap:

A year before the fire or the flood which left my homeless, a man walked up to me, handed me a paper, told me I had been served and I had to show up in court to testify. I found this to be very confusing and puzzling because I didn't know anything about this so call case that I was supposedly a witness too. I tried to explain this to the man, but I'm not good with verbal explanations. He told me that it didn't matter wither I thought I was a witness or not, it was a court order and if I didn't show up at court later that week, I would go to jail.

Very puzzled, and very reluctant, I went to court on the date in question and found it to be one of the most nerve wracking frustrating days of my entire life. First off I had to be searched by a guard, who took my tote bag and dumped it out. (I carry my writing paper, my art supplies, and comic books with me every where . . . it's a really big tote bag. Next I was questioned about my cloths; this being one of my very first confrontations with the world outside of church, I was completely lost as to understand why I was being asked about my cloths. What was wrong with the way I was dressed?

My things were stuffed untidily and messed up back into my tote bag and I was told to sit on the right side of the court room. I sat in the very last pew and spent about an hour, resorting my crayons, comics and papers back into their proper order. I was interrupted while doing this, by my name being yelled out. Apparently the judge had called my name several times, but I had not heard her because I was busy fixing the mess the guard had made of my writing materials. I stood up, but had no idea what to do next. She called my name several more times, before finally telling me that I was supposed to come up front and sit in a chair in front of all of those people.

Up front, I was asked to repeat a bunch of words, but now came my first really big problem . . . I was being asked to open my mouth and speak, something I had not done in years, and I was being asked to do it in a room filled with 40 or 50 people. This was not my first time in court. When I was 14 I was the only living witness to the murder trail of my 5 friends killed on August 21, 1991. It was court that had stopped me talking before. I spent day after day after day of interigation, back at my friend's murder trail. When the murder trail ended, I went home and was never able to speak to a stranger again. Now, here I was again 14 years later in court. The judge asked me again and again to repeat the words of the police officer who was standing in front of me. I did. I tried, I said the words, again and again, but though my mouth moved not a sound came from my lips. It was like me throat was strangling them and refusing to let the words escape. The judge finally accepted a nod of yes and told me to sit down.

Than came the questions from the 2 men sitting at the tables in front of the judge. They had to ask and re-ask their questions several times, but I could not hear their words, all I could do was stare out at all of those faces, rows and rows of them sitting in the seats below. I think I answered some of their questions because the judge kept telling me I had to speak loud enough for the tape recorder to hear me, and finally she said she had had "enough of this circus". She than turned to me and told me to look at her. I looked at her hands. She repeatly demanded I look at her. Than she started yelling and saying that I was a grown woman acting like a child, she started yelling at me about my inappropriate cloths, my refusal to answer questions, my refusal to comply with orders, and my arrogance at not making eye contact. My cloths again. What was wrong with my cloths? She dismissed me as a witness, but told me not to leave the court, but to go wait at the front window.

While I was sitting on the bench waiting, several men and women, I assume to be lawyers based on the fact that they were wearing suits and carrying brief cases and were in a court house, stopped to talk to me about my cloths. Most asked if I had been on my way to a party or a Ren faire when I had come to court. A few elderly women hobbled over to me and started talking about how nice it was to see people dressing up again like when they were young. Someone asked if I was a "dead head". Dozens of people walked past me ever few minutes going in or out of one of the three court rooms, and nearly every one of them, made a point to stop and ask me about my cloths. With each question, I was growing ever more puzzled about this obsession every one seemed to have with walking up to me and talking about my cloths.

About three hours later the woman at the front window called my name and handed me a paper. It was a court order to see a psychologist, with a slip of paper saying that the State of Maine was going to pay for one 3 hour appointment. As I turned to leave, the woman commented that she liked my costume.

I was wearing a Josephine Empire gown of wedge wood blue, with a 3 foot long train. Over which I wore a 7 yard blue velvet burnoose (a type of hooded cape).

A few weeks later at the psychologist's office, I was greeted with: "So you are Wendy. Why are you dressed like that?". (I was wearing a full kimono -- many layers of kimono). He told me he had been reading my case (What case? I have a case? Since when?) sent to him by the judge. He commented several more times about my cloths. Asked if he could see the contents of my tote bag, and than spent the rest of the time asking me about my drawings and writings and how I lived my life. During the course of the meeting he commented several times on my "bizarre accent" and use of old style language, which he said was seen only in rare cases of twins left to be raised by themselves. He called it "twin-language". He said he had read cases of it, but that he had never witnessed it himself before. He found my childhood and 27 year isolation at the hands of people he called "cultists" fascinating, and believed my total lack of prior Human contact was the cause of my "inability to function". He thought it may be possible that I could be "trained like a dog" so that I could learn how to "be normal", as he believed it was possible that I did not actually have a disorder at all, but rather I simply was living just the same as I was as a 4 year old child simply because no adult had ever taught me to be otherwise. By the end of the meeting he had become very excited and was acting like he had just discovered the Lost City of Eldorado or something.

He ended by writing up a paper which he said was a request to the State for funding to do a research study on me, saying that I was an "anomaly" which he could not properly diagnose, because I was displaying so many symptoms of so many disorders. Officially I have "Schizotypal Asperger's Syndrome with OCD Tendancies", however, he thinks I have something that he calls "an anomolly yet to be named", as he says there is no deffinate text book disorder to describe me properly.

I left his office that day very confused, and for the first time in my life, noticing what people around me were wearing and noticing that it was very different from what I was wearing. I was also, now realizing for the first time, that people look into your eyes when they talk to each other. I was also realizing that people on the street around his office seemed to be doing a lot of standing around (wasting their time) and talking to each other. It has only been 4 years since that meeting, and I still am having a very hard time processing the fact that people talk a lot, people look at each other a lot, and people . . . well, you people just plain dress really weird as far as I can see.

I have not again heard back from the psychologist, however, both my mother and my father have gotten letters from him, and each of them, and my mom's current husband, and my three brothers were called in to be "evaluated" by him to see if the whole family was like me, or if I was the only one in the family who was like this. I don't know who else he contacted, but I suspect he was the one who sent the social worker to "the tent" a year later, after the flood and the fire left me homeless and living under a tarp.

All this, because I wouldn't look a judge in the eye? I remain confused over why the judge responded the way she did to me, and I remain equally confused as to why the psychologist responded the way he did to me. It was my first real contact with any one outside of the Mormon church and I found it very strange. But, as a result of the judge and the psychologist, I also found out that outside of the Mormon church, people do not believe in demon possession, and unlike the Mormon leaders who always said I acted the way I did because I was possessed by a demon, an evil spirit, or a poltergeist, I had now learned from the psychologist that what they had called evil spirits was really some sort of birth defect in my brain, which causes me to see the world on a different brain wave pattern than every one else, resulting in me acting, dressing, and otherwise responding differently to things than does every one else. Well, I must say his medical diagnosis certainly made much more logical sense to me than the religious leaders' accusation of demon possession.

And now that I know the church leaders were wrong when they called me demon possessed, I no longer feel quite so much like an outcast, unloved, and alone. I've since looked into this whole Asperger's thing, and I must say, it's kind of a sigh of relief, because now I know what is "wrong" with me, and now, I can figure out how to work my life around it.

Copyright Info: The contents of this lens, are taken from the second draft of the book "For Fear of Little Men" by Wendy C. Allen, and reprinted here with permission.
This article was originally published in October 2008 under the title Living With Asperger's Syndrome is copyright to Wendy C. Allen and The Twighlight Manor Press, and is reprinted here with permission.