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Life with Asperger's: One attorney's story

Mon, Jun 23rd 2008 12:00 am
Editor's note: This is the first segment of a two-part guest column written by an area lawyer with Asperger's syndrome. The second part of the column will run Thursday.

Last summer, well into my 30s, I was diagnosed with Asperger's syndrome. To me, I am an Aspie, and you are an NT - neurotypical.

In a business where reputation is everything, I am hesitant to let people know about my disability.

The diagnosis has been a gift to me. Suddenly, it is as if I put on a pair of glasses and, for the first time in my life, I can view my past and present in a much clearer context. I now find understanding where there was only frustration. Now I know why I have spent a great portion of my life confused by other people.

Asperger's syndrome (AS) is a neurobiological pervasive developmental disorder on the Autism spectrum. This means I am hardwired in a different way. I perceive and process information much differently from the way an NT does. "Aspies" differ from full-blown autistics in that our language abilities are not as severely compromised, and our intelligence is normal to above normal. Many Aspies are actually very intellectually gifted.

I appear neither like Dustin Hoffman in "Rain Man" nor like Jerry on "Boston Legal," but I am one of them. My behaviors and responses to other people and situations can seem humorous, charming, odd, off-putting or downright rude. I appear, for all intents and purposes, entirely normal. That is due, in great part, to my mother's attempts to "socialize" me.

One of the problems of this disorder is that you cannot see it. You can't see my wheelchair or my animal assistant or my hearing aid or my cane, but my disability is just as present and just as pervasive in negotiating daily life as it is for those who must negotiate the world with a physical disability.

The NT world is weird to me, and thus very challenging. I am normal to me. How I think, how I perceive, how I interpret, and how I negotiate the world around me is all I have ever known, so that makes it normal to me. Yet my perception of the world and yours is so categorically different that I have led a life of confused interaction with NTs.

I am learning that NTs do not experience the world as I do. The most succinct way I can explain this disorder and how it affects my world is through this analogy: Imagine practicing in New York courts, where everyone is operating under the Civil Practice Law & Rules except you, who are operating under the Federal Criminal Procedure. No one understands that the CPLR is forever unavailable to you, just you.

This is what my daily life is like. That is how frustrating interaction with NTs is for me and how disparate my experience is from an NT's. I am operating under a different set of rules, and it isn't just that I don't know your rules, but that many of these rules will remain inaccessible to me for my entire life. I view the NT world as the tyranny of the majority, and I am in the minority.

Manifestations of Asperger's

Among other symptoms, people with AS have extreme deficits in the quality of their social interactions; lack of awareness of others; narrow obsessive interests; obsessive behavioral patterns; difficulty making eye contact; stims, or body tics; rigid rule orientation; physical clumsiness; and sensory overstimulation. Our neurological wiring does not allow us to understand NTs. It is not that we do not want to, we just do not know how to. An apt but over-generalized comparison would be that we are a bit like Mr. Spock on "Star Trek." I am like Spock in orientation, but not in affect. I think and perceive like the character, but I behave differently.

The worst part of Asperger's is having such a lack of innate social understanding, as that manifests itself in every interaction in my life. A party or "networking" event is sheer terror. When I was in law school and was expected to attend my first bar night, I called my sister sobbing into the phone. I was absolutely terrified. Her advice: "Look, you get to do middle school all over again, but do it right this time." That wasn't very comforting. Did anyone ever really enjoy middle school? I know I didn't. Probably has something to do with all the bullying, since Aspies have a figurative neon sign over their head that says, "Bully me, bully me!"

I really do try to make the social conversation NTs make, participate in social conventions, but, then, I do not understand them and they seem empty to me. When I try, I go so far afield that I am probably better left in a corner alone. I act like a flibbertigibbet or say or do something inappropriate, especially if I wander into a topic of my personal obsession. I cannot use alcohol as a social lubricator. If you think I am ever weird or inappropriate sober, just take away all inhibitions; what I say might really offend you.

Combine that social deficit with obsessive interests, and you will likely be sorry to have entered a conversation with me. Your lack of interest simply will not be apparent to me. How can you not be enthralled with etymology, punctuation or the minutiae of gel pens, roller balls, ballpoints and fountain pens, nib styles, and ink colors on various types of paper? Oh, then there is paper. Sigh ... paper. Shall I talk? No? Oh. Who wouldn't be enthralled with how our marvelously rich language developed? Not you? Oh. Why?

As a compensation technique, I have a script for many social conventions running in my head. As a result, I am excessively polite. However, once the script runs out, I have no idea what I should and should not say or do. Emily Post and Miss Manners can only get you so far and cannot cover every situation from inception to conclusion. If they could, I would have memorized it as the SIPLR (Social Interaction Procedure Law and Rules). I do not know how or when to end a conversation, or say goodbye. I will just walk away, sometimes in the middle of your sentence. Usually about an hour later, I will wonder: Did I forget to say goodbye? When people excuse themselves from the conversation, I immediately have concern, "Did I obsess or dominate the conversation inappropriately?" You know those oncoming wrecks you see in advance, and can neither turn away from nor prevent? That is what social interaction with me is like. Anxiety is a completely normal state of being for me.

One of the reasons NTs are so good at social interaction is that NTs have "the theory of the mind," as it is called in psychological parlance. Basically, NTs can read minds and have the ability to understand someone else's emotional perspective. I have no theory of the mind. In lay terms, I cannot read other people or their minds. If someone gets angry, I can recognize anger, but not why they are angry or whether I did anything to contribute to it.

This is my typical response to my husband when emotional issues arise: "Are you angry? If so, did I do something to contribute? If so, how can I address this issue?" He has to respond to each question clearly and individually. Imagine going about daily life and having this sort of interaction at work. I can hardly ask people in my work life what emotional reaction they are having, what it has to do with me, and whether I can or should ameliorate it. Those sorts of questions, while vital to my understanding and positive interaction with an NT, are apparently the sort that are inappropriate. Somehow, NTs innately already know the answers to these questions.

Reading this, you might think, "So what? You are a little awkward."

No, it is worse than that, much worse. I smile all the time as a compensation mechanism. Once, I smiled and remained silent while the wife of a friend told me about her miscarriage. We were not particularly close, and I remember thinking, "Did she say what I thought she said? Why would she tell me that? How am I supposed to react to that? What does she expect from me?" She then yelled at me for not showing the proper sympathy and acknowledging her pain. Well, at least I now knew what she expected of me.

I am always going to be awkward, blithely unaware of social situations and of the implicit rules that govern people. Because of the smile defense mechanism, some bosses have felt that I am smirking or laughing at them, when I am really thinking, "What is the appropriate facial reaction I should be expressing, and how do I make it?" or "What are they really saying?"

This awkwardness is not just social in the sense of putting my foot in it; it is both a figurative and literal misstep. Imagine going through life as though you were doing the Elaine dance from "Seinfeld," and your entire physical experience is the Elaine dance. I never know what to do with my hands. Where do they go when I am talking? In my pockets, at my sides, across my chest? If I don't control them, they fly all over the place. Is there one rule I can learn for every situation? All this and more runs through my mind when I am in the midst of any interaction with a person who does not know me well enough to accept all aspects of me.

Physical effects

What is worse is the lack of bilateral coordination. I would bet that most NTs take for granted the fact that their right and left sides move relatively smoothly in opposition or coordination, depending on the situation's need. My right and left sides do not move in the same way at the same time, and I have no sense of space. Walk into a wall? Fall up the stairs? Happens all the time. Once a doctor asked me if I was being abused because of the bruises on my body. I told the truth. He didn't believe me when I said I walked into the wall, or fell down the stairs, or all those other excuses people give when they have mysterious bruises. My "excuses" were true.

I find, depending on the wallpaper, that I have to touch the wall as I walk down a hall so I can actually know where the wall is. Otherwise, my shoulder or nose or knee becomes intimately acquainted with the wall. The wall wins, and when I've got an armful of files, the results aren't pretty. It is usually at this point that someone walks down the hall and finds me sitting cross-legged in the middle of the hall going through the file, completely unaware of where I am and what this looks like. All I can think of is that I have to pick the file up and put it in order. If I have to review it, that is just as good as any other time. I have since been instructed by my husband that when I drop something at work, I need to gather it as quickly as possible and reorganize or reassemble in a conference room or at my desk, not the hall. It seems reduplicative to me, but I internally shrug as I do it. At home, it is not uncommon to find me on the floor in the middle of a muddle.

I have a slightly immature physical affect. I will sit on the floor cross-legged and walk in bare feet through an office. I hug files to my chest like a schoolchild carrying a book. I have a little girlish voice, high-pitched and soft-spoken, even after voice therapy that lowered my voice and increased its volume. Because I am trying to be polite and follow rules that I really don't understand, I appear tentative and timid, but am neither of those things.

Because of this little-girl-like affect, people, especially those in their 40s to 60s, misjudge their ability to steamroll over me. Plenty of people have learned from that mistake. But since my response to the misapprehension does not jive with the tentative, timid, little-girl image, it appears inappropriate or irrational. It is neither.

This column was written by an attorney practicing in Western New York. Send any inquiries or replies to the author c/o adeckmiller@bizjournals.com.