I had jury duty recently. For those of you who aren’t familiar with the US jury service system, US citizens are periodically required to fulfill our civic duty by reporting to a local courthouse and making ourselves available to sit on a jury panel for a criminal or civil trial. The processes vary quite a bit from place to place but often you show up for a day at the courthouse and get sent home without actually sitting on a jury.
Unless you’re really lucky. Like me. Then, somehow, you get put on a jury 2 out of the 3 times you’ve ever been called to serve.
Together with seven other people, I got assigned to a jury panel for a 3-day civil trial. The case was strange. The testimony was at times fascinating, at times mind-numbingly boring. None of that is especially what I want to talk about.
Like so much else in life these days, I approached jury duty as an experiment. A socializing experiment. I decided it was the perfect opportunity to reboot my approach to interacting with strangers. It was a relatively safe, time-limited interaction–if things went poorly, I knew that I would only have to spend three days with these people and then I’d never see them again.
In the past, I would have done my best to pass, hoping that my fellow jurors would like me and more importantly, not think I was too weird. This time around, I made a conscious decision not to worry about that. Continue reading Socializing: Reboot→
Before we get to today’s post, an announcement: As part of the avalanche of advocacy this week, there will be a flashblog on Monday, Nov 18th. You can find the info at “This is Autism” Flashblog. It’s open to autistic individuals, parents and allies and is accepting writing, video, graphic and comics submissions.
On to the post . . .
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Sometimes [often?] I feel invisible.
I thought this feeling would go away when I grew up. Feeling invisible as a kid is normal, right? Everyone is bigger than you. Smarter, more experienced. And the ones who weren’t bigger or smarter or more experienced, were funnier or prettier or . . . something.
I never quite understood what that something was, just that I didn’t have it. When teachers forgot my name, I shrugged and mumbled it for them. Then mumbled it again when they mistook my mumbling for Sandy or Sydney.
And really, to be honest, I never wanted to be one of those kids who everyone knew. The popular kids. Too much pressure. Too much attention. I like blending in. Getting a “well done” sticker next to the “100%!” on my spelling test was about all the positive attention I needed to keep me satisfied.
Still, I assumed being an adult would mean an end to feeling invisible.
*
Invisible is like this: I’m at a neighborhood holiday party. I’m sitting on the couch, talking with someone I know and enjoying it. A stranger sits beside me, inserts herself in our conversation as strangers do at neighborhood parties. She asks typical stranger questions. Do you live in the neighborhood? Where are you from? What do you do? We both turn to her and answer, suspending our conversation in favor of this getting-to-know-you talk.
Do I sound resentful of this intrusion? A little, but more in retrospect, because I know what’s coming.
Slowly, gradually, nearly imperceptibly, I feel the three-way conversation is becoming a two-way conversation between the stranger and the person I was talking to. Eventually, I settle back into the couch so they don’t have to keep leaning forward to talk around me. I listen to their words volley back and forth, unable to find a way back into the conversation, which has now turned to a subject they’re both passionate about.
I wait it out some more, picking at the plate of food on my lap, stuck in a rut of smile and nod as they glide from one subject to another. As much as I want to regain a footing in the conversation, I feel like I’ve disappeared from their radar. Bored and uncomfortable, I finally excuse myself, pointing to my empty plate, saying cheerfully that I want to go check out the dessert table. They look surprised and maybe a little chagrined, as if they only just realized that I’d fallen silent ten minutes ago.
*
It’s easy to assume they had something in common–something I didn’t share–so it was natural for them to become intensely involved in a 2-way conversation. Except that this story repeats itself too often to be “them and not me.”
This is probably fixable. If I was more assertive, made more effort, worked harder at learning conversation skills.
But the invisible feeling comes up at other times too. It’s there when I watch other people take credit for something I’ve done. It’s there when I post something to a group and no one responds. It’s there when someone seems to contact only if they need me to play tech support for their ailing computer. It’s there when someone promises to do something and then forgets, leaving me waiting like an overexcited kid who hasn’t yet realized that there will be no trip to the amusement park today.
That’s it–right there–the powerlessness that creeps up inside me and makes me feel small.
The problem, I see, as I’m writing this, is not so much the practical side of learning to be assertive in social situations. As a child, I was clueless about how to make myself seen and heard. As an adult, I have the potential to do something about feeling invisible, but the feeling itself is now the problem.
To write this, I had to force myself to be with it. Invite it to sit here beside me so I can examine it. And I don’t like it. I don’t want to do the hard work that I know is necessary to befriend the feeling and defang it. But I don’t want to let it haunt me anymore either.
My apartment building is testing the alarm system so I’m at the park today, sitting at a picnic table, writing. It’s a beautiful day and the park had been deserted until a few moments ago when a group of kids on a field trip showed up to eat lunch at the picnic tables and play on the nearby playground.
Watching them find seats and settle down to lunch reminds me of how much I dreaded field trips as a kid. The unfamiliarity of the setting. Having to find someone to sit with on the bus. Worrying that I would end up without anyone to hang out with during the inevitable free time we were given as a reward for enduring the educational portion of the outing.
As the kids are finishing up their lunch and breaking into little groups to play football or soccer, I hear a crash. Two boys were off by themselves swinging on the swings and one of them has literally fallen on his face. He gets up, pressing his hand to his mouth, but doesn’t cry or run to the adults for help. Instead he walks off to the side of the playground, away from the group, repeatedly touching his lip and looking at his fingers.
None of the adults notice what’s happened. They’re distracted by the other children, most of whom don’t hesitate to seek out their help or attention.
The other boy on the swings saw his playmate fall and ignored him.
The whole situation feels painfully familiar. The wandering off to play alone. The clumsiness. The embarrassment at getting hurt and the subsequent refusal to seek help. The two boys playing side by side but showing little interest in each other. The invisibility. Continue reading Hovering on the Fringe→
Back when I first started reading about ASD, I came across David Finch’s “Journal of Best Practices.” If you haven’t read it, all you need to know is that after being diagnosed with Asperger’s he started keeping a journal filled with social rules (best practices) that he wanted to remember.
What a great idea, I thought. I should do that!
Yeah. It turns out that I’m not anything like David Finch. He went about cataloging the rules he was learning with a humor and fanaticism that I just don’t have. I wrote down the rules I was learning for approximately . . . two weeks. Then I got distracted by some other bright shiny thing I can’t remember and abandoned the file.
As I was cleaning out my Google docs folder recently, I came across the rules I’d written down. And I have no idea what the point was, because unlike Finch, who actually set about following the rules he’d learned, all I did was write snarky explanations to justify breaking the rules.
That was a year ago, so I thought it might be fun to revisit them. For each, I’ve listed the rule, my response from a year ago and my current response. Continue reading Rules to Live By→
Aspies are notoriously unathletic. We tend to be clumsy and uncoordinated. Chalk it up to a motor planning deficit, poor executive function, proprioception difficulties, dyspraxia, or all of the above. Whatever the cause, the result is that we’re more likely to be branded a geek than a jock.
Unfortunately, I never got the memo on this. All my life I’ve loved sports and being physically active. Loving sports, in my case, isn’t the same as being good at sports, but I’ve never let that stop me.
Though my parents didn’t know I had Asperger’s they did know that I was clumsy. One of their nicknames for me was “Grace”–as in, “careful there, Grace” and “that’s our daughter, Grace.” I think this is funnier when you’re the one saying it than when you’re the one tripping over an inanimate object.
Perhaps in an effort to help me overcome my lack of coordination, they signed me up for a lot of individual sports: dance, gymnastics, bowling, golf, diving, swimming, karate.
Most of these were activities that I could do with other kids but didn’t require the type of interaction that team sports do. I was on a bowling “team.” All that meant was that I took turns with four other kids. The bowling itself was an individual pursuit. Other kids took a turn. I took a turn. I got to add up the scores. I wandered off to watch one of the arcade games. Someone called me back when it was my turn. It was great.
Golf and dance and karate were the same. I did these things alongside other kids but not really with them. There was an appearance of social interaction. The actual amount of interacting I did was minimal and that was fine.
I’ve always loved individual sports for exactly this reason. I learned to swim soon after I learned to walk. My family had a swimming pool in the backyard so I was in the water months after being born and enrolled in swim lessons as soon as the YMCA would take me. Swimming is still one of my favorite ways to relax. I love being in the water–the sensation of weightlessness, of gliding, of floating, of being surrounded and suspended–and I love the rhythmic movement and sensory deprivation of a long swim.
My YMCA Minnow patch – one of the few things I’ve saved from childhood.
As an adult I took up running. Like swimming, I enjoy the rhythm of running. I also like the way it gets me out into the quieter places–trails through the woods, quiet paths along the river, a beaten single track frequented more by deer than humans. I loved long bike rides as a kid for the same reasons.
The Beauty of Individual Sports
I tried team sports. In middle school, I was on the school softball and basketball teams. It was fun but I wasn’t very good at it and spent most of my time sitting on the bench during games. I also got razzed a lot by coaches for not making enough effort. My basketball coach was always yelling at me to be “more aggressive” but I had no idea what she meant.
There was a lot about basketball that I didn’t quite get. Team sports have many variables–the rules, the other team members, the fast pace, the ball (inevitably there’s a ball involved). For the typical aspie, this is a lot to manage. By the time I got to high school, I knew that team sports weren’t for me.
But individual sports! This where aspies can shine. When I’m out on the trails or in the pool, I feel strong and athletic. I feel like I’m coordinated and connected to my body. I feel like I’m good at a sport! Forgive my exclamation points, but this is exciting for someone who grew up feeling clumsy.
So, let me sell you on the wonders of individual sports for aspies of all ages:
1. You can progress at your own pace. Individual sports allow you to measure your progress against yourself. While you might compete against others, most individual sports also encourage “personal bests.” Running a new best time for a mile or swimming a personal best for a 400 is as fulfilling as beating an opponent. Maybe more so, because it’s an indication that your practice is paying off and you’re better at your sport than you were a month ago or a year ago.
2. You can be part of a team without the pressures of a team sport. Individual sports can be less stressful than team sports when it comes to having to perform well every time. If you have a bad day as a team player, your actions can impact the whole team. If you have a bad day as a cross country runner, you might not place well, but one of your fellow runners could still win the race. There are team consequences, but they tend to be less severe.
3. You can practice by yourself. This is a huge advantage for aspies. Because of our motor coordination issues, we might need a lot more practice than the average person to learn or master a skill. When that skill is something that doesn’t require a team or a partner to practice, we can spend hours working on it alone, at our own pace.
4. You play side-by-side with others. Team sports put a big emphasis on bonding with other team members, which can be stressful for aspies. Individual sports allow you to play alongside others, interacting as much or as little as you feel comfortable.
5. Individual sports tend to be rhythmic, repetitive and predictable. And what do aspies like more than rhythmic, repetitive, predictable movement? Running, cycling and swimming are like large-scale, socially acceptable stims. And you can do them for as long as you like. The more, the better!
6. Individual sports can burn off a lot of excess energy. Many individual sports are endurance based, making them an ideal way to tire out a high-energy aspie. Even moderately vigorous physical activity will burn off excess energy and trigger the release of endorphins, which not only improve your mood but can reduce anxiety and help you sleep better.
7. Individual sports improve coordination. All sports improve coordination, but individual sports tend to be more “whole body” sports, requiring you to integrate all of the parts of your body to achieve the best possible result. Think of the type of movement required for swimming breaststroke versus the type of movement required for playing shortstop.
Why Exercise is an Essential Part of Managing My Asperger’s
I need to get in at least an hour of running, swimming or walking every day. I need to exercise every morning. When I say need, I’m not kidding. If I didn’t exercise religiously, I would likely be on medication for both anxiety and depression.
Hard physical activity burns up the unwanted chemicals in my body and generates a nice steady flow of good chemicals. Exercise takes the edge off my aspie tendencies and leaves me feeling pleasantly mellow. If my physical activity level falls for a few days in a row, I start feeling miserable. I get short-tempered, cranky and depressed. I lose my emotional balance. I don’t sleep as well. I find it harder to focus.
Being physically active also keeps me connected to my body. I have a tendency to retreat into myself and become disconnected from everything that isn’t inside my head. I’m also still–in spite of decades of sports practice–more clumsy and uncoordinated than the average adult. Being physically active helps me combat this and makes me more physically resilient when I do take an expected tumble.
A Little Different Spin on Physical Activity
One of my favorite bloggers, Annabelle Listic, has written a wonderful post–Kinect with Me!–about how she is using the physical activity of gaming to address some of her concerns (which are different from mine). I’ve never played a video game that requires physical interaction but her post got me thinking that this type of gaming might have many of the same benefits as participating in an individual sport.
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.
This weekend I decided to buy new running shoes. Normally I go to a store like Kohl’s where I can just pull the boxes off the shelf and try on as many pairs as I want and stare at the choices for endless minutes without the distraction of a salesperson wanting to chat me up.
But I’m living in a new city–one without a Kohl’s nearby (yes, change is hard)–so off to the mall I went. After some bitching and moaning about not finding exactly what I wanted in the few stores I grudgingly walked through (it’s not like Kohl’s! everything’s different!), I discovered that Under Armour sells running shoes. I always wear Nikes but in the spirit of being less rigid, I decided to try something new.
The first pair of shoes I tried on weren’t right but I was determined to give this trying-something-new experiment a fair chance. I was studying the other choices when the salesdude came over to see if I wanted to try another pair.
salesdude: Did those not feel good? me: They felt too stiff. salesdude: What are you looking to do? me: [slight pause while I try to process this apparent non sequitur then give up and go with the obvious] Buy shoes?
[nervous laughter: salesdude because he’s not sure if I’m joking, me because I know by his reaction that I’ve missed something obvious] salesdude: I mean, like, are you going to use them for crosstraining, running– me: Yes! Running! [and off I went on a dissertation about what I like in a running shoe]
The pause, the uncertain answer, the literal interpretation of an unexpected, off-script question–these are things that unmask me to strangers. One minute I’m the average customer and the next I’m the oddball who can’t answer a simple question and cares a little too much about how the soles of her running shoes are constructed.
But overall, in spite of the mall-induced crankiness, the shopping was a success because I got a new pair of these and I love them:
Musings of an Aspie 