The Weekly Infodump, 2023/07/26

Welcome to The Weekly Infodump, which contains a short write-up of whatever is on my mind. You are allowed to share this newsletter with others and I hope you will.

[Ed. note: So I wrote and meant to send this but then somehow forgot to do so for like a month because a.) I have like 3 jobs riding my ass right now and b.) what is time even?]

There is SO MUCH Internet Chaos right now, and mostly not even the fun kind. Well, except for this:

(links) One mascot costume plus one online auction, equals chaos.

At some point over the last decade, the Canadian province of Alberta acquired a costume consisting of a silver jumpsuit and a lifelike depiction of a giant pita bread stuffed with meat.

I do not judge these bidders one bit, because I have a deep and abiding love of mascotry (is that a word?), the branch of puppetry perhaps most suited to autists, like me, who hate being seen by other people but are soothed by deep pressure.

Speaking of internet culture...

(links) Even the low-stakes stuff turns out to be pretty dark.

What we do know, however, is that the recent revelation makes the Dress one of the all-time worst Milkshake Ducks—a term the terminally online use to describe good things that are ruined by subsequent unsavory discoveries.

(links) The 19th does such good reporting and this piece on racial and gender bias in autism research is well worth reading.

(links) Meanwhile, here's how NOT to do it, courtesy of NPR.

Let's break this down.

(let the mother of all infodumps commence)

So I'll begin by pointing out what I consider a meta-error on the part of the interviewer: how profoundly ignorant and deeply irresponsible it is to let one's allistic subject expound on autism treatments without a.) providing necessary context and b.) pushing back at all.

The first thing the author of this piece fails to do is define some basic terminology, instead conflating mental illness and autism. Now, are there many mental health conditions that co-occur with autism, forming a psychiatric Gordian knot that can be neither untangled nor sliced? Absolutely! My own medical punch card is like one diagnosis away from a free coffee, which is tragic because I use caffeine to hack my own mental health all the time and climate change is making it expensive!

Anyway, for historical reasons, it's Not Great to bundle it all together because this is the sort of sloppiness that got us institutionalized back in the day. And if you think that we, as a society, can't go back to the 1940s, then you have not been reading the news, have you?

The author's second misstep is to ignore the long history of pseudoscientific "interventions" used to "cure" autism and takes this person's words at face value.

And, unfortunately, this person's words skate SO FUCKING CLOSE to saying "gut flora imbalances cause autism so we can fix it by fixing the microbiome" which. No. Just no to all of the following:

I think fecal microbiota transplants have a lot of promise. There has been a study of fecal microbiota transplants in autistic children, where investigators report seeing improvements in GI symptoms and also behavioral symptoms as well as changes in the microbiome.

So this is exactly the kind of thing that leads to desperate parents seeking out fecal transplants for their autistic kids...and very likely, if they can't find (or afford!) a doctor (or "doctor") irresponsible enough to experiment on disabled children, then doing a DIY version with I don't even want to comtemplate what.

She also says:

We know that the presentation of autism is very heterogeneous, and one idea could be perhaps the gut and the microbiome are playing a role in influencing that heterogeneity. If we start to see signals between specific gut bacteria and specific behaviors or symptoms, then that can provide evidence for a microbial pathway that influences autism presentation. And ultimately it could help us come up with targeted treatments for the behaviors or symptoms that autistic individuals want to change, like anxiety, sound sensitivity, and constipation.

So this part starts with a factual statement – autism DOES present in different people in different ways, and nobody really knows why – and then...goes places with it.

In recent years, strong pushback from autistic self-advocates has led to the wider research community being only slightly less blatant about wanting to "cure" us; the way they do it is through extremely coded language, adopting the terminology of neurodiversity but not the underlying principles, while insisting that they're really trying to say, "we want to come up with treatments for symptoms, not autism itself" and it is all very shady.

Here's the thing: if you ask most autistic people what they want, it's almost always something along the lines of "I wish my economic survival didn't depend on either trying (probably in vain) to qualify for disability OR passing as a normal person so that I can get/keep a job" or "If people could stop bullying me to the brink of suicide, that'd be awesome."

Meanwhile, despite their weasel words, what the Autism Industrial Complex really wants is to sell us pills or procedures that will make us less annoying to the NTs (and, of course, make a buck or two in the process).

In the end, I am annoyed because talking about treatments turns the issue into one of individual choice and consumerism, vs. changing society and eliminating things like bias or structural barriers to access, which is where the real change needs to happen.

My goal is to end on an upbeat note no matter how hard the NTs try to ruin my life, so...

(image) Remember folks, live every week like it's shark week!

That is all. You can stop reading now.