Before I started reading about Asperger’s Syndrome, I had no idea what a special interest was, even though I’ve had them all of my life. A special interest, for those you who aren’t familiar with the term, is an “encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus.”
In other words, an interest in a topic that is either very narrowly defined or very intense. If you’ve never spent time around someone with Asperger’s you might underestimate what those two phrases mean.
I wrote a post about special interests in general earlier this week. Not surprisingly, one of my current special interests is autism. Here’s a glimpse of what a special interest looks like in action for me:
- I spend 3-4 hours a day writing, reading, researching and thinking about Asperger’s Syndrome and autism. I’d spend more, but I have to work, eat, walk the dog, sleep, etc.
- My idea of a fun way to spend an evening is watching a DVD on occupational therapy for sensory dysfunction.
- I scribble notes for blog posts on scraps of paper at all hours of the day because I’m constantly relating things that I see, read, hear and experience back to ASD.
- There are 532 autism- and Asperger’s-related scientific articles saved in my Dropbox. There would be more but I only managed to get as far back as 2009 before I lost access to the PubMed and PsychoInfo databases when I graduated.
- Words like perseverative and motor planning deficit are part of my daily vocabulary.
- My browser has a bookmark list called “aspie links.” It has too many links to reasonably find anything so I’ve also created another bookmark list called “important aspie links.”
- Among the important bookmarks is one for the video of the latest meeting of the Interagency Autism Coordinating Committee, in case I need to watch the chapter on the DSM-V updates again.
- My county library has 51 books and DVDs on Asperger’s and I’m reading/watching them in the order the library catalog lists them. I’m on number 17. When I finish that list, I’ll start on the list of 317 autism-related books/DVDs. In order.
- I have an autism-themed Twitter feed, tumblr, Facebook page, Triberr, newsfeed and blog plus accounts at Wrong Planet and Aspies Central.
- If you get me started talking about anything autism related, I guarantee you’ll lose interest long before I do. Unless you’re a fellow aspie with a special interest in autism . . .
Aspies have a reputation as encyclopedias of useless information. We’re the geeks, the braniacs, the little professors. I’ve done more than my share to keep this stereotype alive. I’m a treasure trove of seemingly useless facts and I have superhuman memory for random bits of information.
I know that tigers are solitary animals while lions prefer to live in groups. The last half dollar to be made of mostly silver was the 1964 Kennedy half dollar. The normal human body temperature is not actually 98.6 degrees. The minivan was invented to take advantage of a loophole in CAFE standards.
Why do I accumulate and catalog so much random information?
I think aspies are innately curious by nature. I know that I am. But I think a bigger factor, at least for me, is the tendency to see the world in patterns.
I can’t help noticing patterns and, when a pattern is broken, I need to know why. For example, have you ever noticed that the tops of school buses are painted white? I have.
A few months ago I moved from a rural place where I rarely saw a school bus to a busy metropolitan area. Suddenly there were school buses everywhere and, unlike the school buses of my youth which were uniformly yellow, the school buses here are painted white on top.
Most people will see this and go “huh” and carry on with their day.
But I see the white top on a bus and need to know why it’s there. It’s not arbitrary, right? Someone, somewhere, at some point decided that painting the tops of school buses white is better than painting them yellow. A policy was created, money was budgeted.
At least that’s what I find myself hoping when my daughter finally decides to Google “white tops of school buses” so I’ll finally shut up about it.
That’s how I came to know that painting the tops of school buses white makes the buses cooler (by reflecting sunlight) and safer (by making them easier to see). Also the flashing white light on top makes school buses visible from a greater distance in fog or rain.
In case you were wondering.
The thing about this kind of useless knowledge is that it doesn’t feel useless to me. I like thinking about the simple elegant solution that a change in paint color presents and I like knowing why a familiar pattern has been broken.
Now if only I knew why bacon in a box doesn’t have to be refrigerated . . .
Last summer, my husband and I had some new friends over for lunch. They brought along their two young boys. Toward the end of the meal, the 5-year-old, who was sitting next to me, looked at me and said, “You scare me.”
This was pre-Asperger’s, so like everyone else at the table, I laughed it off as one of those inappropriate things that kids sometimes say.
Still, his comment stayed with me. I couldn’t figure out what I’d done to scare him. He was a friendly, talkative little boy. I’d showed him how to get my dog to do a couple of simple tricks and had given him some bits of hot dog to use as treats. I’d asked him about his swimming lessons and whether he wanted a dog of his own. I’d cooked him a cheeseburger so he wouldn’t have to eat the fancy grown-up food. He’d even chosen the seat next to me at lunch. I thought we were getting along great!
And then, out of nowhere, he told me that I was scary. I was more puzzled than offended, but there was something about his comment that really stuck in my head. Sometimes when I’d catch people staring at me in a restaurant or a store, his words would come back.
You scare me.
A Hard Truth
Months later, I was sorting through boxes of photos and it hit me. There it was–there I was–staring back at myself from photo after photo with the dreaded flat affect. Since they say a picture is worth a thousand words, here’s how a flat affect looks:
And to prove that wasn’t just me getting caught at a bad moment, here’s one I actually posed for:
These pictures are hard to share. I don’t like looking at them. In fact, I almost never like looking at photos of myself. If I don’t have a blank expression, I tend to look like I’m faking a smile or making an uncomfortable, when-is-this-going-to-be-over expression.
As I was sorting through twenty-plus years worth of photos before we moved, I found dozens or maybe hundreds of pictures of myself with some variation of a blank, checked-out expression. I don’t know why I hadn’t seen it before but there it was. Standing in front of the Christmas tree. Attending a wedding. On vacation.
One after another, I tossed them in the trash bag on the floor beside me, tired of looking at this woman who was starting to scare me.
From my reading about Asperger’s I was aware of the difficulty aspies have in reading facial expressions, but it hadn’t occurred to me that I don’t project appropriate facial expressions–or sometimes any expression at all.
The technical term for this is flat affect, which means that a person displays reduced emotional expressiveness. It takes a five-year-old to put it in plain English though: you scare me.
Looking at those photos, hundreds of them in a row, for hours on end that afternoon, I finally answered the question why? Flat affect is unsettling to others–it makes me look bored, angry, sad or spaced out at inappropriate times.
To a five-year-old, who is probably relying more heavily on nonverbal than verbal communication to judge adults, my inappropriate or absent expressions were creating mixed messages. Though I was saying and doing “nice” things, the nonverbal expressions I was projecting weren’t the typical “kind, caring adult” cues he was expecting to go with my words and actions.
Maybe I Can Learn to Fake It?
The disconnect between my expressions and thoughts is frustrating. Not only do I have trouble verbalizing my emotions but my face keeps wandering off on its own and freelancing.
More than once I’ve had a professor pause during a lecture to ask me if I had a question. One day, curious about why this happened so often, I finally said, “No, why?”
“Because you’re frowning,” the professor replied.
Surprised at his reply, I blurted out, “I’m not frowning. This is my concentrating face.”
The rest of the class laughed, but the question was right up there with you scare me in how deeply it unsettled me.
Obviously I was projecting something different from what I was experiencing internally. There I was sitting in calculus class day after day, looking confused, but never asking any questions. This made my professor so uncomfortable that he stopped in the middle of his lecture to ask me what my problem was. I wonder if he even believed me when I told him I wasn’t confused.
I wonder how often people think I’m being deceitful because my verbal and nonverbal communication doesn’t match.
This is a problem that feels too pervasive to fix. I’m literally projecting an expression of some sort during my every waking moment. There’s no way I could–or would even want to–pay attention to what that expression is all the time.
There are also plenty of times when my expression does agree with my disposition, especially when I’m genuinely happy.
Here’s a photo taken around the same time as the above two shots, except in this one I was truly happy and look it:
Since that exchange with my calculus professor, I’ve occasionally tried projecting a specific expression. In class, if I noticed a professor glancing in my direction too often, I assumed that I was doing the confused face and tried put on my “interested but neutral” face. I also made sure to nod a lot, a reassuring sign to NTs.
It seemed to help–it at least reduced the number of concerned looks in my direction–but I’m not very motivated to do this on a regular basis. I’ve seen other aspies talk about how acting lessons or practicing in a mirror helped them overcome flat affect. I admire their commitment to doing this–it sounds like it would take a lot of time and practice to get right.
Then again, if I had a job that required a lot of contact with the public, I might have the motivation to put more effort into improving the type of nonverbal cues I project. Maybe somewhere down the road it will be something I’ll decide to try but for now, I’ll just go on scaring small children and bewildering acquaintances.
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:
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?
Gender Differences in Asperger’s Syndrome
Dr. Hans Asperger, the researcher who originally identified the symptoms of Asperger’s syndrome, based his definition of the condition on the boys he studied. He found that although they had average or above-average intelligence, the boys had poor nonverbal communication skills, failed to show empathy with their peers, spoke in an overly formal way, were clumsy and were drawn toward all-absorbing interests that dominated their conversations.
Increasingly, experts are realizing that AS in girls looks different from AS in boys. For example, boys are more likely to have a special interest in something mechanical–like trains, engines, or elevators–usually at a level far more intense than is age-appropriate. I read a case study about a teenage boy who was obsessed with cataloging the different types of outhouses found in his region. And recently, on a tour of Washington, DC I sat behind a boy who knew more about the history of U.S. presidents than the tour guide.
This kind of deep, obscure knowledge is an obvious tipoff that a child is a little different.
Asperger Traits in Girls
What does AS look like in girls? As a kid, I collected a lot of things: coins, stamps, baseball cards. I loved to organize my collections and was thrilled when I discovered a new addition at a coin show or in my monthly stamp club delivery. These were somewhat odd hobbies for a seven- or eight-year-old girl but I also played with Barbies, collected dolls, loved to sew my own clothes and voraciously read Nancy Drew mysteries.
Anyone who looked closely enough would have noticed that I spent more time organizing and categorizing my Barbies and their clothing than actually playing with them. That my Nancy Drew mysteries were invariably lined up on my shelf in numerical order. And all of those clothes I spent hours sewing? I rarely wore them. I just liked the process of cutting out the patterns and putting everything together like a big cloth puzzle.
The signs were there, but they were far more subtle than those being given off by the little boy who can identify every WWII fighter plane or wants his dad to drive him all over the state photographing outhouses.
Social expectations may also play a role in the underdiagnosis of girls. It’s socially acceptable (or even desirable) for a girl to be “shy” or quiet. The same passive tendencies in a boy are perceived as a lack of assertiveness, an unacceptable trait for males in our society.
Throughout childhood I heard that term over and over again. She’s just shy. That excused everything. If I didn’t participate in discussions in school, it was because I was shy. If I sat on the sidelines at a birthday party or went off to read in an empty bedroom at a family party, it was because I was shy. If I didn’t want to be in the school play or I didn’t have many friends–all part of my shyness.
It never occurred to anyone to ask why I liked to be alone or had few friends or avoided social situations. I was a good girl. I didn’t make waves. What was the problem?
Aspie boys are more likely to act out, which is a problem. And aspie boys seem to be less adept than aspie girls at learning to mimic social behaviors. Perhaps this has something to do with the nature of how girls and boys play.
Aspies at Play
As young girls, my friends and I often played ‘school’ or ‘house’. These were cooperative role-playing games in which we acted out scenarios like math class or making dinner. As long as I got to be the teacher or the mother, I loved these games. They played into my need for control and my love of organizing.
If I didn’t get to be the teacher or the mother, the game usually ended in a nasty fight between me and the girl who got that role because I couldn’t stand following directions. Other kids’ rules made no sense to me. They felt all wrong. I had to be in charge or I wasn’t playing. Dr. Tony Attwood describes this as “god mode”–the way that aspie kids need to control every aspect of a social situation to make it safe for them to interact.
For whatever reason, my friends tolerated my god mode and hung around, though not all the time. I remember more than a few shouting matches that left me without anyone to play with for the rest of the day.
Unlike boys’ games where there tend to be winners and losers, girls’ games are often based on how well a girl cooperates with the group to create an enjoyable role-playing scenario. Boys’ games are often competitive–from sports to video games–and the incentive to play lies in the possibility of winning. A boy can fit in by being good at a skill. If he can get to level ten on a popular video game or has a good jump shot, he’ll find other kids to pursue his interests with. For a boy, a specialized skill that’s valued by peers may allow him to get by without learning the nuances of building and maintaining friendships.
This may also be why older aspie boys tend to excel at a practical skill, like building computers, writing software code or solving complex math problems. Even in the absence of excellent social skills, this kind of practical knowledge will give them a foot in the door with a peer group.
From their earliest social interactions, aspie girls have more innate incentives to learn social skills–or at least learn to fake them. This may be another reason why it’s easier for aspie girls to stay under the radar as they make their way through the school system and into adolescence. Their social survival depends on it. Perhaps it’s the girls who fail to adapt who are most easily diagnosed. Their lack of social skills often results in the sort of isolation, bullying and depression that set off alarm bells in parents and teachers.
Aspie kids are incredibly adaptable. We learn early on that we’re different–whether some specialist tells us that we are or not. We’re far more sensitive to the world around us–particularly the social world–than we let on. It may not look like it to others, but most aspie kids are trying really, really hard to fit in.
And maybe that was the problem for some of us. We became too good at being good girls, so good that we became invisible. We slide under the radar right into adolescence or early adulthood, maybe even into middle age, before we realize that being a good girl has its limitations. Or perhaps we go to the opposite extreme–from good girl to bad girl in the blink of eye–and the people around us chalk it up to the trials of adolescence or a mid-life crisis.
It’s been tough, realizing that being a good girl isn’t the cure-all that I was raised to think it was. Sometimes, I’ve learned, being a good girl is bad for you.