I’m sure you can guess what my answer to that question is. My post this month at Autism Women’s Network, Understanding the Gender Gap: Autistic Women and Girls, outlines some key ways in which autistic girls and women often don’t fit the traditional diagnostic models for autism and Asperger’s syndrome. In part, this is because the traditional models were developed primarily by observing autistic boys.
For anyone who reads the article, I have a few questions. If you identify as female, do you think the traits I listed in the article fit you? Do you think including traits like that in the diagnostic model would make it easier for someone like yourself to be diagnosed? If you identify as male (or not female), do you feel like any of the traits also fit you?
I’m asking that last question because it also occurred to me that part of the problem with applying the current diagnostic model to adult women is that it was developed based on autistic children. When I started researching Asperger’s syndrome, I kept coming across information aimed at screening children and had trouble seeing myself in the most commonly mentioned traits. By the time we reach adulthood, we’ve often made a lot of adaptations that conceal our autistic traits. So I suspect that some of the social traits in particular might also apply to many adults, regardless of gender. I’m also curious what other traits you think should be part of the diagnostic criteria or how the diagnostic criteria could be modified to be more inclusive.
And finally, I’m taking next week off to go visit my daughter. Enjoy the rest of November and if you celebrate Thanksgiving, have a great one!
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.
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.