Thread by @AutSciPerson

I can't not quote this article because this information seriously needs to be known about before people sign up for #Spectrum10k

#StopSpectrum10k

Quote start in the next tweet, and then my thoughts on it:

1/17

https://twitter.com/CarrieGrant1/status/1430071853381455873

So they're trying to subgroup autistics:
""The team will explore “co-occurring conditions”, such as gastrointestinal pain, epilepsy, anxiety and depression. “We also want to find out which interventions are suited to different subgroups,” said Prof. Baron-Cohen." 2/17

"The project will also focus on enviromental factors such as parental age at conception and pregnancy complications. “When a mother is pregnant, there won’t be all sorts of aspects of her biology to interact with genetic predisposition. For example, gestational diabetes," 3/17

"which is, which is where the mother is gaining weight too quickly, which might be altering hormones, particularly her insulin levels, which affects testosterone levels. All of these aspects of pregnancy could change the way that the baby’s brain is developing.”" 4/17

So, looking at co-occurring conditions - Okay, fine, that's not terrible. Though I think epilepsy is the most important one in there.

What kind of "interventions" are we talking about here?

And subgrouping autistic people? That can be used against us in a very bad way. 5/17

And then after mentioning co-occurring conditions, they go right into environmental factors, as if that is "causing" autism. And they go in to talk about a parent's physical condition, implying that could cause autism!

So which part are they actually focusing on? 6/17

Because it sure as heck sounds to me like they're still looking for a way to "treat autism." Nothing in that description rules out that possibility.

And the idea that most of autistic people's depression and anxiety comes from genetics is laughable. 7/17

I am sure there are some autistic people who do have a genetic pre-disposition - just like there are some neurotypical people who do.

But it's not like our society accommodates us or is set up to support us? 8/17

Of course we're going to have anxiety and depression when you don't even listen to us!
When you do studies trying to subgroup us into talented and useless!
When you collect our DNA and tell us it's "not eugenics."
When you have no real safeguards in place to prevent it. 9/17

It is mind-boggling that allistic researchers think collecting spit from a bunch of autistic people is going to help us be less anxious & depressed.

Finding a treatment and/or cure for epilepsy? Sure!

Telling us to just trust you to not do eugenics despite history? No!
10/17

You know, when I saw this hashtag I just felt really tired. Tired of telling people our lives are worth something, that we deserve to be on this earth (regardless of how much more or less efficient we can make a company!).

11/17

But actually, this is what I'm tired of:

I'm tired of people who think doing the bare minimum to seem ethical is good enough.

Even if this data really will not be used for eugenics -for this project- there is NO guarantee to autistic people that it won't be shared.

12/17

The people on the project said that researchers are going to be "screened" to be able to access the data.

There's no guarantee that autistic people are the ones screening. That they won't let in someone who's using it for prenatal screening.

13/17

There's absolutely 0 guarantee to the autistic people they're claiming to "help" that this DNA database is not used for eugenics. There's no safeguards aside from "we're going to make a committee and screen out other researchers."

There's this thing called "lying." 14/17

So this is what I'm tired of.

I'm tired of incompetence regarding the ethics of autistic people's genetic data.

I'm tired of having to tell autism researchers how to do their job.

I'm tired of the autistic community not being prioritized whatsoever in this research. 15/17

If you are collecting autistic people's data,

and you are not an autistic researcher,

and you don't have autistic researchers at the highest level of your research,

why the hell should autistic people trust you?

Because clearly, you don't -really- want to listen to us. 16/17

You just want to look good.

17/17

If you want a conversation about this study @sbaroncohen I am happy to have one. Feel free to email me at [e-mail]

I would be happy to write a detailed report after regarding what will happen with the DNA collected from autistic people. We need to know.

@sbaroncohen More context and an update about what they are actually doing regarding the ethics of the study (I still have loads of questions) -

https://twitter.com/AutSciPerson/status/1430223053234085894?s=20