Asperger's on the Inside

Q: So I’ve heard that the ratio of Autism in men and women is something like four to one. Why do you think there are so many more men diagnosed than women?

A: Ah, yes. The staggering difference between the number of girls diagnosed with Autism and Asperger’s and the number of boys is something that has been puzzling scientists for years. It makes you question, are there really more men with Asperger’s than women, or are the women simply falling under the radar? And I have to confess, I don’t know the scientific answer to this, as studies on the topic are still rather inconclusive. However, my personal suspicions are that it’s more to do with the latter. Women with Asperger’s just don’t seem to stand out as much as our male counterparts, because our style of oddness is more commonplace and easier to miss.

I read an article just recently in which a mother of two children on the spectrum, Annette Lewns, explained that while her Autistic son was picked up at age three, her similarly afflicted daughter was unable to get the help she needed until she was nine years of age! She writes, “The doctors failed time and time again to see through her coping strategies. I fought for years, but I was confronted with a wall of disbelief and skepticism. They were simply unable to understand that a girl might present differently to a boy ^[35].”

As a condition that was historically described as “extreme maleness ^[6],” Autism in a boy can make an individual seem extreme, an outlier on the charts of what’s considered “normal” behavior, whereas women can be more of a mixed bag of “unusual.” We may come across as odd, more rational/logical in our thinking, less empathetic, quirky, and/or “not really like the other girls,” but we don’t fall so far out of the realm of “normal” human behavior as to be flagged. We are still, in part, female and show some degree of social coherence.

Compounding this problem further is the fact that diagnosed Aspie women are relatively rare and thorough studies on Autism in women are lacking. Historically, Asperger’s was always seen as a male condition, and in the days of early Asperger’s research, women were often removed from studies altogether as we tended to “muddy up the data ^[37].” This means that much of our current understanding on Autistic behavior is based on studies of males only, and our diagnostic tools are tailored specifically to diagnose men, so it’s no wonder that the females are being overlooked!

And whether it’s a good thing or to our own detriment, I think women are just inclined to care more about what other people think, so we may put more work into the act of blending in and compensating for our differences. The result of these factors combined is someone whose behavior doesn’t jump out as strongly abnormal to the casual observer.

So does this mean that women’s Asperger’s is milder or that women don’t need as much help as the men do? No, I wouldn’t say so. Women with Asperger’s, or high-functioning individuals in general, often still suffer from the same difficulties that someone of lower functioning may—difficulties in perceiving social cues or reading body language, frustration from oversensitivity or interruptions of hyperfocus, etc.

It just means that instead of expressing these difficulties as outward behavior, we work harder to suppress them and are suffering in more internal ways instead. It’s similar to the difference between anger and depression. One causes the people around us to suffer, and the other causes us to struggle in silence.

I think it’s true that people on the highest functioning end of the spectrum can have the hardest time with their Autism, because people around us don’t recognize the cause of our difficulties and are more likely to misunderstand and mistreat us. We don’t wear a sign on our heads saying, “I have Asperger’s Syndrome (or HFA). Please take that into consideration before you go making assumptions about me.” When we try to fit in, people don’t always see the whole picture. They don’t realize how much work we are already putting in just to pass as we are.

I think it’s important to keep in mind that when we define the severity of a person’s Autism, it’s only a measure of outward behavior and doesn’t really reflect how much one is affected by the condition internally. Those of us who appear to have low severity may actually need more than is apparent to the eye. So it would be good if there were more emotional outreach and assessment for these people, because, as it is, I think the silent sufferers still remain strongly undersupported.

Q:		So I’ve heard that the ratio of Autism in men and women is something like four to one. Why do you think there are so many more men diagnosed than women?
A:		Ah, yes. The staggering difference between the number of girls diagnosed with Autism and Asperger’s and the number of boys is something that has been puzzling scientists for years. It makes you question, are there really more men with Asperger’s than women, or are the women simply falling under the radar? And I have to confess, I don’t know the scientific answer to this, as studies on the topic are still rather inconclusive. However, my personal suspicions are that it’s more to do with the latter. Women with Asperger’s just don’t seem to stand out as much as our male counterparts, because our style of oddness is more commonplace and easier to miss.