Monday, June 17, 2019

Reading the Research: Categorizing by Secondary Conditions

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 has an unusual take on reducing the trashbin nature of an autism diagnosis.  The saying, attributed to Dr. Stephen Shore, is, "if you've met one person with autism, you've met one person with autism."  The meaning being that every one of us is different, in many different ways.  We have common experiences, but the way our autism and other differences manifest can be startlingly different.  To the point of utter absurdity.  

Apparently these folks from Rennselaer Polytechnic Institute think a viable way of splitting the spectrum would be to map out our other conditions and categorize us by those.  Their test population was the data of over 3,000 autistic children, which they ended up placing into three subcategories.  Roughly a quarter of the children had high rates of gastro-intestinal issues, immune disorders, seizure disorders, and sleep disorders.  Another quarter had lots of developmental delays, which would include intellectual disability, ADHD, cerebral palsy, and language delays.  The final group, with the remaining 50%, had only slightly higher incidence rates of those two issues when compared to typically-developing children.  

I've written before about my reluctance to greenlight splitting the autism spectrum.  I think it could serve as a dangerous divider between the autistic self-advocates and the children who suffer as we do, simply because the given diagnosis might not match exactly.  It's already hard enough for us to speak, never mind be heard, and then actually listened to.  We're not asked to speak and advocate for ourselves.  We're told to be quiet and have still hands and do as we're told.  

It's not a great situation and it's particularly stupid when we, the grown autistic people, have the first-person view and understanding that parents, professionals, and teachers can only guess at.  I can walk through a grocery store or a business and point to things that might send an autistic child into a meltdown, but I have serious doubts someone will value that enough to actually pay for it.  

I do think that pointedly noting how many autistic people suffer from which comorbid (co-occurring) conditions is probably a good thing.  I have yet to be convinced it's as simple as these three categories this researcher team has come up with, given the riot of diversity I've seen in the autism spectrum.  Either way, it's an interesting idea, and I'll be curious to see where it goes.  

(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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