Mar 20, 2012 3 Share

Diagnostic Discrepency


Painting of two young women.
Artwork by Kirsten Lindsmith

According to the Centers for Disease Control (CDC), 1 in 110 children are known to lie on the autism spectrum in the US. For boys alone, that number increases to 1 in 70. It’s common knowledge within the autism world that boys are diagnosed more often than girls, and those girls that do get diagnosed are far more likely to be what’s often referred to as “low-functioning,” or severely affected. The medical community usually explains this away by saying that for some reason, autism affects girls differently. For whatever reason, girls who “get” autism are more likely to be “more autistic.” But what the soft sciences (sociology and psychology) ask that the hard sciences often don’t is: Where are the “high-functioning” girls? Is this a matter of actual numbers, or of accurately recognizing autism in girls? I’m sure that there are biological differences that cause autism to present differently in males than in females, but perhaps there is a far simpler explanation for the diagnostic discrepancy: Male and female social roles and pressures are different.

From a very young age boy and girl children are treated very differently. It’s an interesting paradox, because stereotypically autistic behaviors are far more socially acceptable in boys than in girls, which sounds like autistic boys would be the ones glossed over. But over time, as children age, this reverses. An autistic little boy who is obsessed with trains—watching them, talking about them, taking toy models apart and putting them back together—seems more like his peers of similar age. Many little boys go through a “train phase” and, assuming the autistic boy isn’t too socially challenged, he will be at least partially successful at integrating into a social group.

Now think about what happens to autistic girls. When I was very small, for example, I was obsessed with a great number of things: animal taxonomy, niche adaptation, and development; ecosystems, and meteorology; and outer space, and Star Wars. Most adults loved me because I was a very stereotypical “little professor.” But the vast majority of my playmates were little boys. We pretended to be Jedis, complete with light-sabers; we explored jungles and hunted lions; we played videogames mostly consisting of stealing cars and running over pedestrians; and we built spaceships out of cardboard and old pie tins. I had a few girl friends, but they only wanted to play with Barbies (games that always turned into murder mysteries if I was involved) and gossip about who “liked” whom. Not to say I didn’t enjoy those kinds of games; I would have gladly been friends with these girls if they had let me. They just didn’t like me. My best girl friends were “tomboys,” and early on I prided myself in that title. Everything that was marketed to me as associated with girls and femininity seemed weak, pointless, and devoid of any real strength or character. Boys were G.I. Joes, crime fighters, and the only superheroes who were more than their bodies.

As I grew older, the boys I identified with—the stereotypically “masculine”—began to avoid me. We were all slowly approaching puberty, and though we didn’t really understand, the boys knew of the unwritten social clause that separates boys and girls into two separate groups. The only boys who would still play with me were the boys who liked animals better than cars and didn’t play videogames. I eventually was forced to make female friends—real female friends, involving lasting relationships.

Thankfully, I was one of the lucky few singled out by a mother hen friend who took me under her wing and helped me create my own social circle. At this stage, autistic boys and girls begin to separate, developmentally. Autistic girls definitely don’t have it easy, but we have one distinct advantage. The female gender role encourages nurturing behavior, and an emotional openness that is actively discouraged in little boys. A friendly neurotypical girl may see a socially awkward lonely girl and go over and say hi. This neurotypical mother hen will befriend the autistic who can’t take the active role, and even introduce her to others, eventually building relationships for the person who couldn’t have done it alone. It’s not that neurotypical boys don’t want to do this, or are somehow less kind than girls, it’s that the way they are raised discourages this type of behavior, which is usually considered motherly. In girls, this is actively encouraged.

By high school this difference becomes far more obvious. Usually, the few autistic boys who aren’t forced loners have congregated into their own social circle. If you sit down at a lunch table and start talking about the special effects in Star Wars, one of the few kinds of people who’s going to respond positively is another autistic, who doesn’t mind the lack of social convention. In this way, the slightly more outgoing autistics will usually find each other. It’s the ones who stay quiet—or who’ve been bullied badly enough to want to stay quiet—who remain alone without the help of a mother hen. But their high-functioning female counterparts are often already part of a social circle, often one that includes neurotypicals. Verbal, high-functioning girls often have this distinct head start in the social world.

To thrive, or even get by, within the social role allotted to the female gender, one must develop social skills. Men are given somewhat of a pass when it comes to more nuanced social convention. Think of every time you’ve heard a joke or seen a sitcom about how men can’t read nonverbal cues. Women are expected to talk in a round-about, read-between-the-lines manner—“Do these pants make me look fat?” means “Tell me you think I’m thin and beautiful”—and men are expected to stumble in this mysterious women’s language. A girl who’s direct and forthright is often seen as blunt and rude. This convention is so culturally embedded that when sociologists conduct studies with equally qualified male and female candidates, men who ask for a raise are referred to as “go-getters” and women who ask for a raise are referred to as “pushy,” even “bitchy.” As a girl who was all but clueless when it came to social rules, I was thought of as a rude, annoying know-it-all. Even today I have a hard time making friends with neurotypical girls because of this; no matter how much I smile (and it has to be constant) I’m perceived as rude and unfriendly by girls my age.

This all comes back to diagnostic discrepancy, especially with late-in-life diagnoses. As girls get older, if they are able, they are forced to learn to interpret at least basic body language, tonal variation, facial expression, and social nuance. This means that after a certain point, the only “obviously” autistic women are those deemed “low-functioning,” because they’re the ones who can’t learn to fake it. Boys learn to fake it as they grow older, but even then there’s nowhere near as much pressure for them to rid themselves of autistic traits.

Many of the autistic girls and women I’ve met have spent much of their lives without a diagnosis. So, they’ve learned to adapt, and no longer feel they fit the diagnostic criteria. They used to have trouble reading facial expressions, but not any more, not since they learned how to. These high-functioning girls are getting missed, and they’re growing up struggling with depression, anxiety, and other mental health issues and they don’t understand why. I believe that in the near future, the diagnostic discrepancy will correct itself. Maybe there are more boys on the spectrum than girls due to genetic reasons, but I know that the gap is not as wide as it seems. There are more of us out there, and no one even knows we exist.



Comment Options

Anonymous

To many clinicians with no Aspie Girl experience!

Thank you for writing about something that is very timely for my family in particular.  Our daughter, 8, was diagnosed at 5 with Asperger's Syndrome by a behavioral and developmental pedi at U of Chicago.  We took her to see a psych at U of Chicago (had to see one in order to get neuro-psych testing later this summer) last week.  He brought in two additional psychs (men) to "see" her like she's some kind of lab rat...the elusive Asperger Girl.  At the end of the 2 hour appointment, they took me aside and said they think she ""may be PDD-NOS, but definintely not Aspie, because she will make eye contact on occasion and the "boys with Aspergers" don't do that.  Yes, he said that!  In a way, she is penalized in her diagnosis because she has spent 3 YEARS learning to do just that...make eye contact.  It's difficult and exhausting for her, but since she can do it, she's no longer Aspie.  Yeah, girls can't be Aspie if they make eye contact. WTH?

Anonymous

I very much agree...I believe

I very much agree...I believe there are far more females on the spectrum than they know...I am 56 and just found out a few months ago for sure...I managed to get by and fall through the cracks...the same with one of my daughters who is 33...and now I am watching them being sceptical of my grandaughter...I do have a developmental pediatrician that does see the traits though and believes she should be monitored closely...thanks for info!

Anonymous

Great post!

Great post! I think that you make some very sound, and first-hand, deductions about how gender plays a role in diagnosis and treatment of youth with Autistic disorders.