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.
I will very proudly where my ugly-ass toe shoes because it means I don't have to be in pain in the absurd amount of pain that I was before.

You never know how much pain you're having to tolerate until you stop being in it.

Didn't realize just how miserable it was/I was.
[and just to clarify, there are some decent looking toe shoes - it's just that the specific model to shoes that I have to wear are legitimately ugly and don't come in any decent color. I think I'm being pretty objective when I say they're ugly. I don't care though.]
I think some abled people in this world would have rather me tried to have another surgery, with even more pain over a span of a month or two,

so I could wear different kinds of shoes instead of just one kind.

It really sums up ableism in our society when you think about it.

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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
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
11 Sep
"I would like to ask for non-autistic people to start actually helping.

We need a buffer to the trauma. We need a break.

I’m tired. We’re tired. Something has got to give so autistic people can get some rest when fighting for justice."
#StopSpectrum10K
autisticscienceperson.com/2021/09/11/wha…
TW gaslighting, spectrum10k

Looking at the replies to the #Spectrum10K statement and I get to read this - Replying to @Spectrum_10K W...
Read 4 tweets

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