Tag Archives: special interests

Rules to Live By

When you have Asperger’s Syndrome, sometimes life feels one long “if . . . then” statement. If someone is crying, then they’re sad. If someone is sad, then they want a hug. If I give them a hug, then they might feel better.

From childhood I’ve been building up a database of if . . . then rules, hardcoding them into my brain through repetition. This is one of my core coping strategies for dealing with my Asperger’s on a daily basis. Without my if . . .then database, left to my own devices, I’d come across as much more autistic than I do.

If . . . then allows me to pass in an NT world. If . . . then gets me through most days without randomly offending people.

If . . . then, if . . . then, if . . . then.

In high school, I took a computer class that consisted mainly of learning BASIC, the programming language that ran the TRS-80 computers that populated the new and mysterious computer lab. I immediately fell in love with the clean simplicity of computer code. Everything was accounted for. Everything was explicitly declared in the code. If it wasn’t, the computer balked. Computers don’t infer.

My first computer was a  Tandy-Radio Shack TRS-80 like this one. See that cassette player? That was the “hard drive.” Old school geekery.

How simple life would be if we had to declare everything up front. If every task and interaction had a neatly nested set of if . . .then statements to be stepped through.

I spent hours programming simple text games. If ‘yes’ then ‘turn right’ else ‘turn left.’ It was fantastically binary. The elegant addition of ‘else’ allows for choice, but only one. Turn right or turn left. Open the door or leave it closed. Each choice branching off in two directions, creating a tree of neatly predefined decisions.

If you’re thinking a few steps ahead, you’ve probably anticipated the roadblock my fourteen-year-old self ran up against. Working further and further down the tree, choices multiplying exponentially with each new level, eventually I would be overwhelmed by the possibilities and abandon the game I’d been so excited about an hour before.

If . . . then, if . . . then, if . . . then.

There should have been a lesson there, but I began again and again, erasing the tape that held the code and starting with a fresh scenario. You wake up to find yourself locked in a padded room . . .

The computer was apathetic. Each time I started over, it displayed the same blinking gray cursor. It lacked judgment or even any real memory capacity other than the one I allowed it to have.

There was a predictability in coding that was comforting. The choices were finite. As long as I thought things through, there were no surprises.

I tried imposing this kind of order on the rest of my life, but people seemed reluctant to be programmed. They liked unpredictability. They didn’t need to know how every minute of  the day would unfold to enjoy it.

They had their own sets of rules. They seemed reluctant to share them.

If . . . then, if . . . then, if . . . then.

I’ve always been more of an observer than a participant. I watch. I collect data. Patterns emerge. A rule forms. I catalog it. Apply it. Adjust, adapt, reformulate.

Watching is safe. Quiet is safe. This is one of the first rules I learned and it stuck in the way that few have since. If I’m quiet, then I’m not getting yelled at. If I don’t say anything, then there will be nothing for anyone to make fun of. If I watch carefully enough, I can figure out what the rule is here without having to ask and look stupid.

The rules kept me safe. They created a positive feedback loop, naturally rewarding me for following them and punishing me for deviating from them.

But over time, the rules boxed me in. There were rules for school, rules for work. Rules for marriage. Rules for motherhood. Slowly, unconsciously, my life narrowed, and narrowed further still. Like my game collapsing under the weight of exponentially growing options, the rules became more of a burden than a support.

I forgot about the elegant ‘else.’ Choice receded, rigidity crept in.

Breaking the rules was unthinkable. If . . . then. Stay within established parameters. If you can’t find a rule for it, avoid it. Breaking the rules causes dire consequences. So dire that they’re unknown.

If . . . then, if . . . then, if . . . then . . . else.

Understanding Asperger’s Syndrome has helped me rediscover the beauty of else. I have choices. The rules are malleable. I made them; I can unmake them.

The rules are supposed to serve me, not the other way around.

Editing the rules is hard, but I’m trying.

Many stay. They’re useful. Necessary. They’re how I pass. Offer someone a beverage when they visit your house. Leave an empty seat between you and another person on the train. Kiss your husband goodbye when he leaves home in the morning.

Some stay in spite of their apparent uselessness. They’re harmless. They give order to life. Always swim an even number of laps. The bowls face to the left in the dishwasher. Dry your hair first after showering. The blue towel is mine.

The bad rules get deleted, though not without a struggle. The house has to be spotless if guests are visiting. Items on the ‘to do’ list must be finished by the end of the day no matter what. Iced coffee has to come from Dunkin’ Donuts.

People gift me with the rules that I fail to intuit. When you say goodbye, look at the person you’re talking to, not the direction you’re about to walk away in. If you have something important to say, wait until you’re face-to-face to start the conversation.

New rules emerge, from conscious thought not patterns. Think before you automatically say no to a spontaneous change of plans. There is more than one right way to do something.

If . . . then, if . . . then, if . . . then.

I add, delete, overwrite, reorder, sort, categorize, refine. Rules that make my life easier. Rules that help me struggle less. Rules for order and rules for efficiency. Rules to create structure. Rules for navigation.

I develop if . . . then tests for the rules:

1. If a rule prevents me from making a spontaneous choice then it’s too restrictive.
2. If a rule negatively impacts someone I love then it’s probably doing more harm than good.
3. If a rule was created more than five years ago then I may have outgrown it.
4. If a rule makes me sad, angry, tired or anxious then I need to question its origins.

The rules continue to evolve. I’m learning to break the ones that need breaking. Sometimes that’s freeing. It leads to laughter, spontaneous joy, new discoveries. Other times: resignation, regret, disappointment, confusion, fear.

This is life.

Life is not a TRS-80. Life is a wondrous, messy, untamable process.

So here is my newest rule: worry less about the rules.

Be more authentic. Embrace my quirks. Trust myself.

When Being a Good Girl is Bad for You

Increasingly, experts are realizing that Asperger’s in girls looks different from Asperger’s in boys. Some thoughts on what that means for girls on the spectrum . . .

I was raised to be a good girl. This meant, above all, being seen and not heard. Don’t bother the adults. Don’t make waves.

And this was mostly fine with me. As a child, I spent hours and hours alone. Some of my happiest memories involve going on long bike rides, exploring in the woods, and playing games in my room, all by myself. I remember quite a few fiercely contested games of Risk and Monopoly that pitted me against myself.

My parents never questioned what I did for hours in my room with the door closed. If I disappeared for the afternoon into the woods behind our house, their only concern was that I be home by five-thirty for dinner.

I don’t know what would have happened if I came home at six. I was a good girl and good girls followed the rules.

But the problem with being the good girl, especially if you’re a young undiagnosed aspie, is that good girls are invisible. Aspie boys tend to act out. They have problems with anger management. They’re defiant and oppositional. They’re not team players. They shrink away from competition and refuse to follow the rules.

Years ago these boys got slapped with labels like “juvenile delinquent” and “behavior problem.” Today, out of every ten children diagnosed with Asperger’s syndrome, eight will be boys and two will be girls.

The big question raised by this disparity is: are boys more likely to be aspies or are they just more likely to get diagnosed because their symptoms tend to fit the classic manifestation of AS?  Continue reading When Being a Good Girl is Bad for You