I’d like to consider myself a typical Duke student. I do all of the typical Duke things – absolutely refuse to refer to things by their proper names when there’s an available acronym, spend more time complaining about how much my life sucks than actually taking steps to change that, and compulsively checking my Google Calendar. And on Friday nights, I do all of the typical Duke things – carefully observe interactions between two adults of different genders.
To clarify: I study audio and visual recordings of mice.
I’ve been working in a lab for around a month now to help develop a quantitative model of autism in mice, so that we can look at their brain patterns and generally understand the reasons for the behavioral differences we observe. We have a couple of different types of mice – ‘normal’ mice, and mice we’re praying display the behaviors we want to study. So we put one of these mice into a cage with a female mouse and we (namely, I) watch and analyze the interactions.
Which is all well and good, if excruciatingly boring, except for one interesting detail. All of the mice we’re testing are male.
And on the one hand, this makes sense. We want to keep things as consistent as possible, and obviously male mice interact differently with females, on average, than other females. We need to know what caused the difference, and to start over with the opposite paradigm would be time consuming and expensive. And honestly, the differences here are pretty darn obvious. We know it works. Why not stick with it?
But at the same time, there’s a lot of data we’re just missing. Say that our experiment works wonderfully. There’s a huge difference between groups. I write a paper, I get published, we expand to humans, and we figure out some of the electrophysiological differences between neurotypical humans and those of us who demonstrate signs of autism. We figure out how to alleviate these symptoms. A lot of people gain the opportunity to mitigate the anxiety and compulsive behaviors that might make their life difficult. It’d be a dream come true. But it wouldn’t be complete. We’d be missing half the data. We wouldn’t know how it affects the other gender, and while we could potentially extrapolate and say that the same patterns are seen in both genders, we really would have no idea if that’s true.
And that could be a huge problem. Already, there’s a huge disparity in rates of diagnosis for autism spectrum conditions, with men being diagnosed at a ratio of as high as 15:1, compared to women. Potentially, that’s because men are more likely to develop autism. Maybe there are social factors that lead to a biased diagnosis, due to the pressure to conform that women face from an earlier age. Or maybe we don’t know what these conditions look like in women, because we’ve never really bothered to check.
And this is a huge problem, not just in autism, but in a host of related conditions. For the same reasons as my mice, to eliminate confounding variables and keep uniformity, women are generally ignored in clinical studies for the vast majority of testing. This can lead to disparities in diagnosis because while we know how the condition presents itself in men, we don’t know what it looks like in women. And so there’s a risk of missed cases, incorrect prescriptions, and a host of other problems.
To be fair, we’re trying to combat this. I’m fairly sure that the NIH is now requiring that funding must be used equally across genders when doing medical research, and so that should help us gather more data. But it will require a huge shift in the way we do research, the way we set our experiments and paradigms, and the way we think about diagnostics.
If this all works out, I may have even more mind-numbing mouse videos to analyze. But it’ll be worth it to truly understand what autism means – for all of us, not just some.