Gender, autism and stretchy bitch syndrome'

By Os Keyes

Part of my thesis work requires keeping up on every medicine-related study involving trans people. As part of that, I recently read a study looking at the comorbidity of Ehlers-Danlos Syndrome (or “Stretchy Bitch Syndrome”, to Tumblr) and gender dysphoria. The authors find a higher rate of correlation than one would expect; 17% of the adolescents attending a dedicated EDS clinic report gender dysphoria.

This kind of correlationism is common; being trans, we’re told, often goes hand in hand with being autistic, or having some form of PTSD, or eating disorders, or etc, etc, etc. It’s also very old: as part of my dissertation work, I’ve run into clinicians trying to delve into the causes of or “inoculations” (actual word used) against gender dysphoria back into the 1950s. In the case of this paper, the authors point to social reasons; gender dysphoria’s social impact on one’s interaction with the medical system may lead to trans people with EDS having worse healthcare experiences and more complications - upping the probability of them ending up at a dedicated EDS clinic.

But as both framings suggest, there are particular political consequences of how one interprets these kinds of correlations. We are increasingly seeing, for example, associations between autism and gender dysphoria used to delegitimise access to trans therapeutics - with opponents relying (implicitly or explicitly) on the idea that either (a) being autistic renders one non-human enough to not be able to consent to treatment or have a voice or (b) that gender dysphoria is clearly a consequence of being autistic and so patients should be barred from trans therapeutics unless and until their autism clears up (ie, forever). Most commonly, you see both - and all these variations are based on the power of causative claims to legitimise or delegitimise medical treatment, along with the implication that being trans and medically transitioning should be treated by medicine as a “last resort”.

Given that, I’m obviously glad to see the authors here not making strong claims about causation (and when they do make claims, pointing to differences in social context rather than something etiological). That seems to be the divide, these days: researchers who are trying to gatekeep claim biomedical causation, researchers who aren’t claim social (“Rapid Onset Gender Dysphoria” people aside). But it seems like both are (amongst many other things) taking a really shallow view of how gender, identity and embodiment interact, one that ignores the actual phenomenology of existing in the world as a somatic creature.

Autism, trauma and EDS all have two things in common. The first is that they’re often found in trans people. The second is that they all impact how you relate to your body and others’ interactions with that body. Just like bodily disorientation can cause moral change, it seems reasonable to think bodily disorientation can cause perceptual change: that you see things or experience things others don’t by dint of your trauma, EDS or autism. And by reasonable, I mean “please see all of disability studies”.

So here’s a hypothesis; let’s say 1% of people are explicitly trans, and 5% of people with EDS are explicitly trans. The two common responses are that EDS causes transness, or that EDS causes transness to be overreported. But what if the problem is a lack of EDS causing underreporting? What if 5% of everyone is trans - but the normal attitude people take to their bodies gives you only a 20% chance of noticing? And the bodily disorientation, the social disorientation, of being disabled generally (but also in particular ways) in society…makes you more likely to twig?