Autism, and the autistic spectrum, is often thought of as being a male affliction. Almost everyone knows the numbers, at least in an abstract sense: boys are three to four times more likely than girls to be diagnosed along the autism spectrum. Because of this, there has been little research not only in how the standard drugs for autism will affect girls, but in whether or not the autistic experience is the same for girls as it is for boys.
A compelling and well-written essay in the NYTimes Magazine by Slate editor Emily Bazelon suggests that autism is in fact a very different experience for girls; for example, girls on the spectrum tend to be highly proficient in reading and writing, with little inclination or fascination with math. The essay is based on interviews with specialists and girls who've been diagnosed as being on the spectrum, and highlights both where research is going, and where there is a sad lack. Most interestingly, it looks like teenage girls with autism are aware of their inability to navigate the complicated social networks of teen girlhood, and this knowledge of what there is that they cannot participate in helps spiral them into severe bouts of depression.
Now imagine that the girl, because her autism doesn't present like a boy would, has never been diagnosed as being on the spectrum - she is merely labeled a depressed teenage girl. It's so likely a scenario, that thinking back to my teens in the SF Bay Area, one or two socially ostracized girls from my own high school immediately come to mind.
Once again, in a continuing theme in scientific research, women are excluded from scientific research, so the models of health, disease, and affliction don't match what actually occurs in women, and their health suffers for it.
Sunday, August 05, 2007
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2 comments:
Hi Kelly,
This is a great post. You're absolutely correct to note that women are by and large excluded from clinical research, and given the differences -- especially social -- in how different populations experience health and illness, not to mention how different interventions work or don't, this problem is particularly egregious.
All I can say is that we are working on it, and in my case, I mean this quite literally.
Daniel -
I think a lot of people are working on it, but I sometimes wonder if people forget that it's not just how the medication affects the heart that's different, or those pesky cycling hormones that make clinical trials more difficult to run.
And to be honest, I include myself in that. I was genuinely shocked at the idea that women might experience autism differently than men - after all, isn't autism a pretty set definition of behaviours/experiences/symptoms? It was pretty eye-opening for me to realize that not only is it chemical differences that affect (afflict?) us, there are social elements to health that are ignored, as well.
Off the top of my head, the only area I can think of this being clearly acknowledged is in cancer/chronic illnesses where caretakers are involved - and the emphasis tends to be on how different genders fulfill caretaking rolls... but I'm sure more will come to me the minute I close the comment window. ;-)
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