Monday, September 16, 2019

Reading the Research: Beyond "Light It Up Blue" (and white)

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 points out the increasing diversity of the autism community, as well as highlights how difficult it is to answer the question "what causes autism?"  Traditionally, autism has been a "white male" diagnosis.  This has sidelined people of color, as well as women and gender minorities.  Turns out that's not at all representative of the autistic population, and a lot of people got left out of the discussion when psychologists wrote the diagnostic criteria.

That includes me, as it happens.  The specter of Kannerian autism still looms large in some circles, and given that my original diagnosis was "Asperger's Syndrome" not "autism," I don't count. That's the icing on the "you were born female and also female autistics don't exist" cake.  There's even one particular researcher that insists autism is caused by an overabundance of testosterone, basically saying all autistic people are male-brained.  

Clearly, the assumptions for who's autistic and who's invited to the discussion table about autism needs to change.  I'm sorry to say that in my adult autistic social group, there's only one person of color amongst the dozen people that attend on a regular basis.  There are at least two gender minorities, and a few born-female autistic people, at least.  

There's one other point to make about this article.  While we don't know what causes people to be autistic (and we may never find out), the research has pointed to a number of factors: everything from air pollution to genetics to oddities during pregnancy.  While it's possible that it's a matter of "minorities' unusual behavior sticks out more, therefore more diagnoses," I suspect the matter is far more systemic in nature.  

It takes time, you see, for knowledge and information about autism to make its way to the majority of the public, from the hallowed halls of lofty academia.  Time is required for insurance companies to be persuaded that autism is a real thing that needs coverage and services.  And most of all, it takes time for the government to shift its unwieldy gears of bureaucracy to serve the needs of its people.  

Black and Hispanic people, on average, have fewer financial assets, education, and social supports to fall back on, compared to the white majority.  So it would be no surprise to me that despite the claims by the researchers here, the vast majority of the difference here is simply an increase in knowledge of autism and what services are available.  Mostly, though, it doesn't seem like they took poverty into account.  

Poverty affects your diet (poor nutrition can easily exacerbate mental illness and interfere with your ability to learn social skills), your educational options (less advantaged schooling limits your ability to learn all kinds of skills, never mind regular school subjects), and your mental health and stability (broken homes take energy away from school and emotional development).  The definition of autism being as broad as it is, it's opened the door for a lot of people that might otherwise have never been able to afford that help.  

The autism community, I think, will be better for their inclusion.  I just hope, in this age of domestic terrorism and prancing white supremacists, that we can manage to listen to our people of color rather than sidelining them.  

(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)

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