While she was growing up, Fiona Pettit O’Leary sensed that she was not the same as her peers. She explains that living her day-to-day life was exhausting because “there was an ever-present feeling of disconnection.” Along the way, she experienced anxiety, depression, anorexia, and suicidality—making an attempt on her life at age 18. It wasn’t until she was married with kids on the spectrum, however, that she began looking into autism more. Only then did the light click on: she had Asperger’s. A formal diagnosis confirmed this.
Many women on the milder end of the spectrum recount similar experiences. It could, of course, be due to the fact that autism awareness only took off recently, leaving a number of less-affected adults undiagnosed. But autism has always been seen as a male disorder; the gender ratio is approximately4:1. This leads to an important question:
Is autism truly as male-dominated as we’ve thought, or have girls with autism been slipping through the cracks?
Mounting evidence has led scientists to believe the latter is most likely the case. And if that’s true, there have been a lot of girls who have passed through the system, missing out on support they need just as desperately as the boys do.
WHAT WE’RE LEARNING ABOUT GIRLS WITH AUTISM
Historically speaking, the fact that fewer girls are diagnosed with autism has been a conundrum for researchers. Were girls simply less prone to it for some reason? Or were doctors missing them altogether because their disorder looked different than boy autism?
We’re still not 100 percent certain what the answer is. But recent research has begun to shine a light on the mystery.
When it comes to the more severe end of the spectrum, autism in boys and girls appears relatively similar. But when you move toward the milder end with Asperger’s and Pervasive Developmental Disorder, things start getting a little more complicated.
Namely, girls are better at “hiding” their autism symptoms. Socialization does not come naturally to these girls—just like it doesn’t in boys with the same disorder. But girls will watch their peers and imitate their behavior. They may make eye contact and overall be more social than boys.
In addition, girls on the spectrum, on average…
Engage in fewer repetitive behaviors
Have interests that are more “socially acceptable.” While their degree of fascination matches that of boys with autism, their fixations tend to be on things like celebrities or cute animals—interests that are less likely to raise suspicions that they are “different.”
Play differently. Unlike boys with autism, girls are more likely to engage in imaginative play, but they do so differently than neurotypical girls. For example, they may play with dolls but spend their time arranging situations and scenarios rather than actually acting them out.
Tend to be less violent and better behaved.
Make no mistake: just because girls are better able to adapt doesn’t necessarily mean they’re better off.They often describe social situations as exhausting because they must put on a front.
In addition, on a societal level, girls’ interactions are often different and more complicated than boys’—especially once adolescence hits. They’re steeped heavily in communication, social scenes, and fitting in—things girls on the spectrum tend to struggle with. These girls may desperately want close relationships yet struggle to form them due to these difficulties. As a result, they often feel isolated.
Is all this why they experience depression more often than neurotypical girls and guys on the spectrum?
DIFFERENCES IN DIAGNOSES
As it is right now, boys with autism are diagnosed an average of four or five months earlier than girls, depending on the severity of the disorder.
This is because we know way more about boy autism than girl autism. As a result, we’ve created our diagnostic tests to reflect the characteristics of boys with autism. Girls with autism are more likely to pass through life without anyone recognizing they have a disorder.
THE PROBLEM WITH THIS
Many people with autism, especially adults, describe an autism diagnosis as a relief. All their lives, they’ve felt different but never knew why, and an autism diagnosis provides illumination. When girls go undiagnosed, they do not get this relief.
More significantly, they don’t get the support they need. Girls may go through a plethora of diagnoses and treatments, but nothing seems to work because their primary disorder is not being addressed. Which means they’re not getting the help they need.
THE POINT OF ALL THIS
While some researchers are still pretty sure autism is largely a male disorder, they also believe we’ve been missing the girls who also have it. That’s a good start. And the fact that we’ve identified some of the differences between boys and girls on the spectrum is great, too.
But we’re not done yet. Scientific research on girls needs to continue, developing a way to better identify and treat their autism.
Because there are far too many overlooked girls out there. And they need our help.
Okay people, don’t get upset. Put your pitchforks away. I’m not making light of nuclear disasters. I’m not the least bit happy about Fukushima contaminating 1/3 of the world’s oceans. It also terrified a bunch of friends I have in Japan — and it still does. And I certainly don’t appreciate how Chernobyl screwed with so many people, those many years ago. Let the record show: I believe nuclear disasters aren’t joking matters.
But sometimes they come in handy.
Witness March 28, 1979… the day of my younger sister’s 13th birthday party. She was a “girly girl” who was passionately into pink and hanging out with other pink-loving girly-girls. After unsuccessfully attempting to get me enthused about birthday parties, at last she had a daughter who wanted to go whole-hog with the party thing. The first (and last) time she’d tried the birthday party thing with me was when I was 7 — and mid-way through, I disappeared from my own party, new pocket knife in hand, and hid from the room full of screaming girls who were playing “party games” in a hellish cauldron of shrieks and activities.
Now, Mom got to do it ALL up! She spent weeks ahead of time preparing, as did my sister. They were so very into the whole thing, and as the date approached, I grew more and more anxious… and withdrew into my shell, dreading — absolutely dreading — the onslaught of 13-year-old girls, all hopped up on their wellling hormones, yelling and laughing and being oh, so very perky.
For days, I was dreading it. It took a while for me to get there, but eventually, I got to Aspie-grade anxiety and trepidation about the whole business. I tried to be good-natured. I tried to be brave. I tried to look on the bright side. I tried to plan my approach… and then my escape. Thankfully, my sister and I were so different from each other, we had completely different friends, so I wasn’t actually expected to be at the party with them all. I’d planned to retreat to my room, lock the door, and stay there until my other sister (who shared the room with me) made me let her in.
I’d sit on my bed and count out the pennies I’d been collecting and counting/re-counting for years. I’d go through my stamp collection and study all the different pictures and try to understand why a country would have such a picture on their stamp. I’d have extended visits with my imaginary friends from Middle Earth. I’d withdraw completely into my own world, and be content in isolation. And quiet.
If I could have stayed indefinitely in my world behind closed doors, it would have been fine with me.
On the day of the party, however, something was wrong. Riding home from school on the bus, the radio was turned off. It was usually on, playing the latest Top-40 hits. But not that day. And as we walked home from the bus stop, the whole world was absolutely silent. Even the birds were silent. Strange. Eery.
When we walked in the house, our Mom was silent, pale, and she was listening to KYW – the nearest news station. A transmitted message kept playing over and over, droning on about something I couldn’t make out. And the emergency signal kept going off, every few minutes. We weren’t sure what was going on, but I was so consumed by my concern over the birthday party, I was pretty shut down, as it was.
Before long, we found out that the Three Mile Island (TMI) nuclear facility (which was 50 miles away from our home) was having issues. There’d been an accident of some kind. And it might be serious. I had no idea what to do. Nobody did. My parents were intensely worried about the effect of radiation on their kids (I had three sisters and a brother). They didn’t want our reproductive systems messed up by radiation.
And we were downwind from TMI.
But the birthday party…
Other parents didn’t seem nearly as troubled. Or if they were, if anything, they just wanted life to keep on as it had been, so as not to worry their kids. So, the little girls started showing up for the birthday party. And I retired to my room.
The party went on for a very loud half hour, before my parents decided we needed to evacuate. Get the kids out. Go stay with my grandparents who lived upwind of the facility. Just get out. Nobody knew how bad it was going to get, and my folks didn’t want to find out first-hand.
So, my Mom called all the parents of the girls and told them to come pick them up. We were leaving till TMI settled down. No questions about it.
One by one, the parents reappeared and took their daughters away. And the hustle and bustle of the party was replaced by the hustle and bustle of packing our clothes and jumping in the car to drive to my grandparents’ farm.
Where it was quiet.
And there was no constant sound of traffic passing the house.
And there was no birthday party or gaggle of screaming girls.
And there was no pink.
Just the farm… and the woods on the other side of the cow pasture, where I could spend hours. Alone. In silence.
It would have been nice to be there under better circumstances, but in a pinch, a nuclear accident will do.