In my mind these two issues are related.

They hope to find "subgroups" with the genetic research on autistic people -

I fear other researchers will use this to again group autistics based on if they can speak,

& decide which ones deserve inhumane treatment.
#StopSpectrum10K
Just like parents of autistic people with co-occurring conditions,

Non-autistic people talk about how "Well you don't need ABA because you can talk & function" -

Meanwhile our autistic kin who cannot speak & need alternative communication are traumatized & isolated.
To be clear - functioning labels are complete bull.

But let's not pretend like non-autistic people won't categorize us based on how "useful" or "independent" we can be in life, if they have the opportunity.

They use categories to make assumptions & treat others poorly.
If they really do create these subgroups based on combinations of genes -

Is there going to be a day where autistic toddlers' fate will be decided based on what they find?

Will autistic children be sent to 40 hours in ABA therapy because of their genes?

Or sent to JRC?
The day we know "enough" about the cause of autism that autism researchers like SBC will be happy with,

is the day that autistic people are inevitably and continually subjugated to even more harmful "treatments" such as 40 hours of ABA, and even quack "cures" at 1-2 years old.

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More from @AutSciPerson

13 Sep
I would like to find the genes for neurotypicalism so they can get better supports early in life.

Finding out this information will help neurotypical well-being and quality of life, and help with co-occurring conditions.

Please ask your neurotypical children to spit in a tube.
We have 3 neurotypical ambassadors, 4 neurotypical people on our annual advisory panel, and we're willing to consult with neurotypical people and their families after starting to recruit.

We can't disclose researcher's diagnoses so we can't answer about the researchers.
We are not looking for a cure for neurotypicalism but this research may in the future lead to a genetic test for neurotypicalism.

We are anti-eugenics.
Read 5 tweets
13 Sep
Just to clarify regarding the #Spectrum10K study..

Collecting genetic data of a very specific subset of autistic people who have official diagnoses will always be biased.

Using questionnaires made by NTs to describe autistic "behavior" will always be biased.
1/10
Something they note in their preprint is that SPARK didn't seem to have a lot of questionnaires. Most of them are parent-report.

Even if they have more questionnaires in the UK study, they will likely combine this with SPARK.

So any other questionnaires are going to be moot. 2/
I'm not sure how many samples they would need to correlate questionnaires to polygenic scores, but I bet it's more than 10,000.

I'm also assuming they'll use family without diagnosis as a control - which is not a true control. Don't remember if they do this in the preprint. 3/
Read 11 tweets
12 Sep
Every day that I have an outing,

and my venous malformation doesn't hurt me,
and doesn't hurt me the next day,

I thank my weird-looking, very ugly toe shoes. 💜

Took me a surgery that didn't work, and 3 years of going through footwear, but I finally found it.
Physically abled people will always have something to complain about.

They'd tell me I need to get foot surgery (part of the reason I tried it - 3 week recovery).

They'd joke that I should "just amputate it" (so overdone and absurd).

Now they tell me my shoes look ugly.
I don't usually say this,

but I will say fuck off to anyone who complains that my shoes look ugly and I need different ones or they're not appropriate for the occasion.

People not in pain simply have no idea.

I'd rather not be in pain everytime I take one step,
thank you.
Read 6 tweets
11 Sep
So,

I am going to talk about the #Spectrum10K study that is an online pre-print (assuming will be published soon)

that literally looks at the genes of autistic people.

And it's just as bad as a lot of other autism research.

Let me explain -
1/21
First of all, it's important to explain that they are correlating genetic scores (polygenic scores, which I'll get to later)

with checklists and questionnaires.

Please read this thread I wrote to understand why this is bad:


2/21
Now you may be wondering,

What are the questionnaires they are correlating these polygenic scores (the genetic scores) to?

Here's a list I found from the caption of Figure 3 of the paper.

NVIQ = non-verbal IQ,
VIQ = Verbal IQ,

3/21
Read 38 tweets
11 Sep
[near meltdown tweeet, all caps]

CAN ANY SINGLE NON-AUTISTIC PERSON READ THIS PAPER AND GIVE A GODDAMN SUMMARY OF IT SO THAT AUTISTIC PEOPLE CAN UNDERSTAND THIS AND I DON'T HAVE TO DO EXTRA RESEARCH + BE ANXIOUS ABOUT MY PHD WORK ON THE WEEKEND?

medrxiv.org/content/10.110…
This research that has ALREADY BEEN PUBLISHED BY SPECTRUM10K

is crucial to pointing out the harms of this study,

and I don't have the fucking spoons to sift through the pathologizing.

I've seen 3-4 good ally responses to my blog post today.

BUT ONLY 3 OR 4. THAT'S IT.
In case you want a quick update about how autistic "advocates" are doing right now -

WE ARE NOT OKAY. NONE OF US ARE OKAY.

This is time-limiting because I wanted to talk about it at the panel tomorrow but I'm out of spoons to read through every single sentence. I can't.
Read 5 tweets
11 Sep
Spectrum 10K has already published a study about autism genes, trying to subtype autism, using multiple international genetic databases,

And no one's talking about it.
Read 5 tweets

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