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My Journey

The prefix auto- means "self," so autism is the condition of being by oneself, being alone. The name is so appropriate that two scientists, discovering autism independently and simultaneously in different parts of the world, both used the same term.

Asperger Syndrome, which I have, is considered a form of autism. Tourette Syndrome, which I also have, is characterized by impulse-control problems and involuntary movements and vocalizations called tics - mine have become milder with maturity and been controlled with medications. Associated with my Tourette's and Asperger Syndrome are several other conditions, including obsessive-compulsive disorder and some symptoms similar to those of attention-deficit disorder and attention-deficit hyperactivity disorder. All of them are challenges I have had to come to terms with through a struggle lasting many years.

People with Asperger Syndrome do not fit into the society around them. We do not instinctively pick up clues in body language and voice tone that tell us what people mean. We do not automatically know how to make friends; we have to study it for years. We are socially inept until we have learned, sometimes over a lifetime, how to function in society.

We are seldom of below-average intelligence, however. I do not want to perpetuate the myth that all autistics can accomplish huge mathematical feats in their heads, but the fact is that many do have some startling talent, as do people with Tourette's.

Yet, one is expected to be ashamed of having Tourette's, autism or any sort of mental or emotional disability. I know this because when I break the rule, openly discussing my disorders the way I would discuss my race or my gender, some people become embarrassed and uncomfortable. Others admire me, thinking that it must take immense courage to talk about such things. But for me, my conditions are not a taboo; they are part of who I am. If people were not expected to be ashamed of having mental conditions, discussing them would be commonplace, and nobody would find it unusual.

Tourette's and Asperger Syndrome are more common in men than in women, so as a woman with both, I am a member of a tiny minority. With my disorders piled on top of my gender and my age, I belong to a group so small that few people ever think about it.

Many things are easier for me than for those with more severe Tourette's or classic autism. Sometimes, when pleading their case to the "normal" people who misunderstand them, I feel as if I were standing up for the rights of a race that comprised only a quarter of my heritage. As a woman with mild disorders, I experience a little bit of the same discrimination as a woman with more severe disorders - just as a multiracial woman experiences a milder version of the challenges of being a minority. Knowing the "normal" world more intimately than many autistics know it, I may even make a good link between the two realities.

Other children feared, mocked and took advantage of my disabilities throughout grade school, and on top of that, I was always the one being punished. This was not for lack of trying to behave well. To nearly the best of my ability, I did what I was told.

Autistic children usually have no desire to be dishonest, and I was no exception. I didn't skip class, draw on the walls, cheat on assignments, or break even the minor rules I found stupid, like the no-hats-no-jackets policy, or the rule in high school that underclassmen couldn't go off campus during school hours. Once I was even unwilling to glance over at a classmate's book to see what page we were on, because we had been told not to look at each other's work.

Ironically, I got suspended more often than most of my peers, because I had no knowledge of social rules and ended up offending and frightening people when trying to get a laugh out of them. I couldn't manage the nuances that made the difference between a joke and a threat or insult. The field of language was my strong suit. The field of social interaction was not. I had few friends, and most of my interpersonal contacts involved people trying to get me to do something stupid so they could laugh at me. I craved attention so much that, even when not egged on, I did whatever ridiculous things came into my head, just so people would laugh and remind me that I existed. Too often, though, it went beyond laughter, and I was maliciously teased.

Also, the main features of my Tourette's were severe impulsive behavior and a volatile temper. As a result, I did things like walking up and kissing classmates on the neck without warning. I could get into physical fights over the species of an insect.

When adults asked why I'd done something, I could never explain it. It had just happened. Even though I avoided deliberate transgressions that, for other students, were a part of everyday life, I often broke rules by accident or in "the heat of the moment." As a result, the principal's office became one of the most familiar places in school for me. To this day, I can remember a certain poster from the office of the third school I went to; I could almost draw it right now, and I hate every line of it.

I learned to speak, read and write very early, and have continued to develop those abilities. Some people admired me for being so successful with words despite my Asperger Syndrome and Tourette's. Yet, my success was not despite my disorders, but because of them. Some autistic people are mathematical prodigies; I was a linguistic prodigy. Whatever my neurological conditions had taken from me, they had given me this.

My internal life was extremely active. I put on little puppet shows for myself with my hands, pretending they were ducks and swans and dogs and monsters that acted out complicated dramas. I made up stories and told them to myself while wandering around the playground. I learned not to care about the strange looks I got from other kids. During some stages of my childhood, I even took a kind of weird pleasure from being an outcast, being able to scare people away just by looking at them.

I knew that human society places a great value on physical appearance. My first mistake was thinking that I could win popularity by beauty alone. My second was expecting that I could manage the complicated codes of what beauty was.

I wore tight, low-necked shirts, but didn't know I was supposed to wear anything under them for modesty. I wore lots of makeup - too much, and the wrong colors. I had no idea what went with what. And even when I did manage to look beautiful, it didn't make up for being a weirdo. I had the same desire for love and popularity that all girls had, but it took me a long time to learn to fulfill it in a healthy way.

Throughout my childhood, teens and young adulthood, I struggled to fit in. I asked questions of my parents, teachers and friends, and told them all the difficulties I had in understanding my classmates. I read books about normal people and books about autistic people. I watched social interaction, trying to figure out how it worked.

Most of all, I wrote. I crystallized my thoughts about the world by keeping a diary; I worked to comprehend humans by exploring and describing them in the written word; I invented and wrote about imaginary cultures to help me understand my own.