I didn't watch the youtube video yet, and I..

I should've watched the youtube video first.

It's bad. (Quotes below)

#StopSpectrum10K
#Spectrum10K

1/14

"The causes of autism are complex. Some scientists think there may be thousands of genes involved. Researchers have already found more than 100 genes of autism. But mutations of those genes are only found in 5% of autistic people. So 95% of autistic people must carry other genes"
"that are linked to autism that are still unknown. However, not every person who has an autism gene is autistic.
That stretch of DNA is linked to autism but doesn't always cause autism. So, we need to know why not." 3/14
"Furthermore, these genetic changes are also associated with other conditions, such as epilepsy, ID, gut problems, and depression. As well as providing an explanation for the condition," 4/14
"some families may also find emotional and practical support from others who have the same changes in the same gene. Knowledge about autism genes can also help us tailor better support for individuals. For example, some autistic individuals have sleep difficulties." 5/14
"For some, changing the environment can help, but for others, knowing the genetics can lead to individualized care. Participation in Spectrum 10k will help us deepen our understanding of who you are."

This video does not emphasize co-occurring conditions at all.
6/14
Also, I'd like to remind all of these autism researchers here that there is VERY little understanding of sleep in general.

So the idea that there would be "individualized care" based on someone's genes is honestly absurd at this point.
7/14
The best treatments for hypersomnia, narcolepsy, (& I believe sleep phase disorder),

are nearly all the same!!

"let's put you on stimulants."

And it's just as bad for insomnia.

There is NOT individualized care for sleep issues even if you learn there's different genes.
8/14
It's trial and error of medication (often after already trying any life changes you can).

The focus on sleep, although it's very important to research in other ways, makes no sense in the context of genetics because we don't even know how to treat basic sleep disorders!
9/14
I honestly think the only real worthy cause in this entire thing is figuring out how to treat epilepsy.

And let's be clear - they could have just focused on epilepsy! But instead they do this "we're helping autistic people" and subgrouping BS that doesn't actually help. 10/14
The most ridiculous part to me is they talk about how other people could "seek support" and "find people" based on their genetic profile and gene mutations!

You really think in the future, every autistic person is going to get a genetic report and then seek others out? 11/14
We already have categories! The categories are the co-occurring conditions you just mentioned in the video! We don't need genetics to figure that out.

Other categories include: different modalities of hypersensitivities & different modalities of hyposensitivities.
12/14
I feel like the people who do these giant genetic studies want to live in Gattaca or something.

I don't want to live in Gattaca! The autistic people I know don't want to live in Gattaca!

We just want support and to be able to live with supports and accommodations.
13/14
I know this is going to surprise you but for most things, aside from certain co-occurring conditions like epilepsy,

you don't need to figure out everyone's individual genes for that.
14/14

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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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