Monday, January 15, 2018

Reading the Research: Late Diagnoses in Autistic Girls

Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.

Today's article addresses why fewer girls get diagnosed with autism than boys, with the currently quoted ratio being about 4 boys with autism to one girl with autism.  The gist of it is that the tests are likely currently geared toward how autism manifests in boys, which leads to not detecting girls at the same age as boys.  Girls are affected differently by autism sometimes, a fact to which I can probably safely attest. 

One of the major differences the article points out is that autistic girls tend to be better at "faking it."  Small talk is not necessarily a problem for us, nor are other brief types of social interactions.  But it can be harder for autistic girls to manage day-to-day life.  So things like getting up, getting dressed, keeping your papers and binders in order, etc, tend to present more of a problem for autistic girls than for boys. 

Speaking as someone raised female, and someone autistic... I can safely say that I did blend fairly well, after awhile.  Enough that I made it most of the way through college before anyone seriously suggested I go get a diagnosis.  I remember having to ask my mom, in middle school, how to make small talk.  But she told me how, though not precisely why, and I learned.  I heard similar stories in Washington DC, earlier this month, from other autistic self-advocates.  Lots of us didn't fit in, and did struggle with handling life and its challenges, but we didn't receive a correct diagnosis, or even any diagnosis at all.

These researchers seem interested in ending this phenomenon of late or nonexistent diagnoses, by studying biological sex differences as well as gender differences.  Right to the point of using the word "cis" in a sentence.  That's so forward-thinking, I just about smiled.  ("Cis" means that your gender identity matches your biological sex.  So if you were born female and identify as female, you're a cis woman or cis female.  We already have words to describe people whose biological sex and gender identity don't match, but not everyone's heard the word for when they do match.) 

Hopefully these folks will continue to publish their works, as it seems like they have a decent grant from the National Institute of Health to study these effects of biological sex and gender.  This is particularly relevant, as it seems from my reading that autistic people tend to be less constricted in our gender identities than neurotypical people.  I, for example, identify as agender (meaning I would like you to take your gender stereotypes and keep them far away from me).  But others I've met identify as both genders, or feel more one way than the other some days, or what have you. 

I mentioned my (lack of) gender identity to the other autistic self-advocates when I was at the conference in DC.  While one of them merely felt overwhelmed by the whole "gender vs biological sex" dimension to life, one of the others commented that she hadn't really thought about it, but since I mentioned it, she also didn't feel particularly feminine or female. 

So this is definitely a group to watch, all things considered.  The group is most interested in improving diagnostic rates, but the resulting research should be interesting from a gender identity perspective as well.  Relatedly, I might start taking notes on which researchers I meet, if I get to meet more, and see if I can track their research.  It'd be interesting to make connections and influence research that way, but I might need spreadsheets to keep track of it all... 

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