Monday, March 2, 2015

Autistic Girls Are Apparently An Anomaly

When I was diagnosed at the age of two, the doctors seemed to be unusually taken with me. I presented a unique case for them - I tested incredibly high on the IQ test administered to me and most importantly was (and still am) female. In 1990, it was largely assumed autism was exclusively present in boys who bordered on or were mentally retarded. I can only assume this was the reason they wanted to hospitalize me for a month for further study - smart autistic girls apparently are a rarity.

For the record, my mother refused to let them do that. I cannot be more grateful for that decision -  I already begun to bond with my mother and would have missed her.

In fact, it's still considered a rarity. Boys and men are four times more likely to receive an autism diagnoses than their female counterparts. It just seems to be easier to notice when a boy is antisocial and withdrawn with specialized interests than when a girl is. Whether that's due to neurological differences or general societal expectation, it's created the image of autism looking like a little white boy.

(Why white? Because let's face it - people of color are systematically ignored in the mental health arena. People of color are consistently underrepresented and underserved in general but that's another post in itself.)

Under these circumstances, it's kinda astounding I was diagnosed at two years old. Most women are diagnosed on the autistic spectrum well into their teens or adulthood to explain a lifetime of social awkwardness and perhaps missing certain developmental milestones. Ergo, the therapy and treatment I received throughout my life doesn't really exist for most girls or women. It creates a systemic problem of women getting misdiagnosed or their condition not taken seriously. The research that does exist on autistic girls and women says they present more "normal" than their male equivalents, making them less likely to receive needed services.

 I can't say the idea of autistic women presenting more neurotypical than autistic men doesn't have some validity. When I tell people I'm autistic, about 95% of the responses I get are "WUT? REALLY? I WOULD'VE NEVER GUESSED." That could be due to years of intervention or my parents consistently modeling constant socialization or always trying to be as personable as possible but I honestly don't know. And the girls and young women I work with at my internship do have naturally better social skills and behavior than the boys and young men. The Artism Spectrum writes that girls in general are given more opportunities to be social and form friendships than boys due to neurotypical girls taking autistic girls "under their wing" to unwittingly teach them social norms, “appropriate” interests, and wider groups of friends. In this way, all girls are expected to be somewhat social to be accepted. At the same time, if a girl is socially isolated people will come up with a million and one reasons beyond possible autism because as social as girls are mandated to be, we're expected to keep to ourselves.

Contradictory? Yes. Welcome to being a girl, where you're supposed to be a walking contradiction.

We need to recognize the autistic female experience as part of the autistic experience. There are promising emerging studies about women on the spectrum (one in the UK is headed by a woman on the spectrum herself), but more attention needs to be paid. Men (particularly the white ones) always dominate any narrative and it leaves the rest of us unaddressed. The more we look into and encourage the female autistic narrative, the better we'll understand autism as a whole and thus more accepting of autism in the world.

1 comment:

  1. My wife found out around the same time I did that she is autistic, but of course was not diagnosed as a young person at all despite the obvious signs. The ironic part is that, when I was growing up, boys were far more likely to be diagnosed as autistic than girls - but only if they did show signs of real mental retardation or didn't have some sort of special ability or talent. If you were exceptionally good at something, then you could have been a complete social mess and still not set off any alarm bells with other people as long as you were really good at something. People seemed to presume that, if you had such a talent, you were going to be set as far as college, a career, etc., and people can be far more forgiving of social awkwardness in boys as long as those boys can do something respectably well. The same, as you note, is not true of girls, in whom social awkwardness is a lot less tolerated. But, we have three daughters now who are all very obviously "Aspies", even though we have not gotten formal diagnoses for any of them yet (my wife and I have done so much studying of autism ourselves that we actually doubt the ability of most professionals in our area to "get it right" with regards to our girls to the extent that we have). My thinking, based on my own family and what I see in the schools, is that the numbers of males and females on the spectrum are probably pretty darned close to equal. But, I'm not sure that the psychological profession is able and willing yet to admit such a great amount of error in its definition and application of diagnostic criteria.