Thread by @AutSciPerson

SBC's interview with an autistic person about #Spectrum10K
podcasts.apple.com/us/podcast/id1…

"There are 2 broad types of autism research. There's basic research which is understanding the causes, that links back with genetics and environmental factors." 1/10+

"And then there's applied research, which could be directly relevant to autistic people's lives and their families lives. And that could be clinical, educational, it could be related to vulnerability or mental health or the world of work." 2

"And we do all of these different types of research. I think they're all important for different reasons."

My confusion:
Isn't the entire point of your Spectrum10K study to get autistic people direct support?

Couldn't you use those funds to do that right now instead? 3

SBC on suicidality in autistic people:
"Why do we do the studies? I think the research can be used to present to policy makers and local authorities to say 'look these are the risks, this is the current state of how autistic people are experiencing life, and put in more support."

Again.. I mean sure? But the genetic database research isn't going to solve any of that?

So much of the genetic research just seems like the actual wrong way to go about it. It's like it's the only tool he has in his toolbox to investigate these things or something.

Like maybe just toss the baton to a different researcher (an openly autistic researcher, even!) and have them do qualitative studies instead of what you're currently doing.

Maybe just decide to listen to autistic people when they tell you this is harmful (or will be).

autistic person: "There does seem to be some sort of genetic factors that pre-dispose.."

SBC: "I think that sounds right. That's why we want to do the study, Spectrum10K. We want to separate out the experiential factors & the genetic factors."

That's not how genetic data works?

"It could be..some of the anxiety just derive from the nature of autism. That if some autistic people find it difficult to sort of cope in a complex social environment, pressure to communicate, that can also be overwhelming..So there may be a sort of genetic element too."

Mentioned sensory hypersensitivity and that it might be genetic reasons, "and again we could make environmental adjustments to make it easier. We could ask autistic people what kind of lighting, sound levels make them more comfortable."
Doesn't require a genetic database!

"Genes have been found associated with autism. The science hasn't found all the genes yet. That's why we're doing that big Spectrum10K study...the genes for autism.. some of them are associated with disability, but some of them are associated with strengths or even talents"

"particularly in this pattern recognition skill" - then talks about how it's hugely advantageous to history/society/etc.

...right.. not eugenics.. not eugenics at all..

Omg, the autistic person asks about the empathizing-systemizing research that SBC does and I just had to pause it for a moment.

SBC said
1. it's not necessarily all genetics based.
2. SBC and others were able to correlate certain alleles to the systemizing part
[cont]

3. he says he understands why some people are uncomfortable with the research (that there are on average, differences between "males and females" on the empathizing/systemizing scale)

"because historically women have"
& then I paused it.

No mention of trans & nonbinary people?!

"a long history of discrimination against women"

Still nothing about trans and nonbinary people.
I mean really, please continue erasing us.. /s

then mentioned differences "of the mind between males and females."

[cont there's more]

and then he mentioned nonbinary people ONCE -

"I want to see a world where boys and girls, men and women, and those who are sort of nonbinary, are all treated equally."

Sigh.

"The 2 sexes, if we think of the chromosomal sex..what's the impact of only having 1 X chromosome or 2. We know that biologically males produce more of certain hormones prenatally.. testosterone. The level is twice as much in male fetuses as in female fetuses." (more brain stuff)