Discover and read the best of Twitter Threads about #spectrum10k
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The thing that worries me about the #Spectrum10K thing is all the autistic children, and autistic adults with higher support needs, whose parents/guardians will happily submit their DNA to the study without their informed consent.
This isn't even a 'ugh autism parents are awful' take - it's a 'lots of autism parents/guardians do not routinely pay attention to goings-on in the autistic community and therefore will be unlikely to see the information and warnings that are coming out about this study' take.
But there is also an element of 'some autism parents/guardians will be all about the aims of this study, and won't care if its a violation of the autistic person in their care's autonomy to submit their DNA'.
I am begging, pleading, not just for #ActuallyAutistic people, but anyone who has an autistic family member, to please not give #Spectrum10K your DNA. They want to use it to "identify modifiable risk factors for autism", ie. figure out ways to identify and prevent us being born.
They will lie about their intentions when they ask you for it. They have been deliberately obfuscating their aims and purpose for months, only to have the unredacted wording of their grant application forced out of them by a freedom of information request. liamodell.com/2022/11/12/spe…
They know what they're doing, and they have deliberately tried to cover it up and pretend that their aims/goals are something else. The only reason to obfuscate this sort of thing is if you KNOW that autistic people don't want this, and you want to find a way to do it anyway.
There are so many areas that autism research could focus on in order to actually help us - so many #ActuallyAutistic people who have been routinely neglected by autism research - and yet all this money is STILL being funnelled solely towards finding the 'causes' of why we exist.
If researchers actually engaged with #ActuallyAutistic people, they'd get a mile long list of areas where we would like research to focus, which would keep their research careers busy for the rest of their professional lives, so why don't they do that? Because it's not about us.
I have to ask: if your endgame ISN'T to try and find a cure for autism, or to figure out ways to prevent any more of us being born, then why the hell are you focusing all your energy on finding the 'causes' of our existence rather than on the things that could ACTUALLY help us?
I think I just realized why autistic burnout is so bad.
It's because when neurotypical people reach their limits, they can't go on.
When autistic people reach their limits, they continue because they know they have to continue to be considered valuable.
1/
It's because when neurotypical people reach their limits, they can't go on.
When autistic people reach their limits, they continue because they know they have to continue to be considered valuable.
1/
I was told that if I get burnt out, I won't be able to do anything, so I should rest.
What I didn't say because I was still thinking it through,
is that when I get burnt out, I go on for weeks or months more because that is expected of me and I Cannot Let People Down.
2/
What I didn't say because I was still thinking it through,
is that when I get burnt out, I go on for weeks or months more because that is expected of me and I Cannot Let People Down.
2/
And so often autistic people are constantly pushed to their limits even at 4, 5, 8 years old. Constantly.
We are so often already at a level of stress from NT expectations and our environment that neurotypical people don't even comprehend it.
3/
We are so often already at a level of stress from NT expectations and our environment that neurotypical people don't even comprehend it.
3/
[THREAD] KEY CONCEPTS FOR AUTISTIC ADVOCACY
In this thread, I am going to provide definitions for some of the key concepts which often feature in discussions, training, arguments and even academic papers about autism.
Defining them and agreeing about the definitions can help us reduce our arguments and gain consensus more quickly -- or at the very least, it can help to ensure that we're at least arguing about the same thing, even if we don't agree about how to approach it.
I have repeatedly stated that while I support the #StopSpectrum10K campaign, I am in favour of genetic and biological research. There are numerous autistic activists with chronic illness who feel the same. Some even attend biology research conferences.
We know that the @spectrum_10K do not support the social model of disability. That is not news.
It came as something of a surprise that the @spectrum_10K leaders deliberately appointed the type of people they knew would destroy the hope, relatability, community-building and support offered by people like Pete.
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
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/
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/
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/
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
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
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
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
"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…
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 -
Looking at the replies to the #Spectrum10K statement and I get to read this -
Thread of the latest quotes by Simon Baron-Cohen about the #Spectrum10K study.
Autistic people, autistic researchers, and non-autistic researchers:
This consent form isn't very clear, and you have to say yes to giving your data to unknown future studies.
SBC: [image]
1/11
Autistic people, autistic researchers, and non-autistic researchers:
This consent form isn't very clear, and you have to say yes to giving your data to unknown future studies.
SBC: [image]
1/11
SBC: [image]
Notice the specific phrasing of "if that was the outcome Of Our Consultation..then we would" about not using DNA in the study.
Who's going to pick your consultants again? Is it you?
2/11
Notice the specific phrasing of "if that was the outcome Of Our Consultation..then we would" about not using DNA in the study.
Who's going to pick your consultants again? Is it you?
2/11
He says researchers should have a "wider debate in society" as if he's at all done this before?
I'm not sure if this is a new quote or old one, but he uses the term "autistic community" & in his last statement he included "autistic people and their families" in that term.
3/11
I'm not sure if this is a new quote or old one, but he uses the term "autistic community" & in his last statement he included "autistic people and their families" in that term.
3/11
I think non-autistic researchers who center the feelings of the researchers who are harming autistic people
don't realize that they are centering those feelings
over the feelings of autistic people and the huge potential harm that could be caused to all of us.
#Spectrum10K
don't realize that they are centering those feelings
over the feelings of autistic people and the huge potential harm that could be caused to all of us.
#Spectrum10K
I get that there are autistic people who are "directly attacking" the researchers.
I get that as a researcher, all you're thinking about might be "they could come for me next!"
But these researchers have a huge amount of power and have done an excessive amount of harm already.
I get that as a researcher, all you're thinking about might be "they could come for me next!"
But these researchers have a huge amount of power and have done an excessive amount of harm already.
I'm not going to police autistic people in terms of how they critique #Spectrum10K because that's not my place or my job.
And these are the researchers who will nearly always get the funding, who will nearly always have the power.
We're not talking about people who listen.
And these are the researchers who will nearly always get the funding, who will nearly always have the power.
We're not talking about people who listen.
This is not a subtweet or a call out.
I just hate how non-autistic people center their fears and personal concerns when speaking against eugenics.
Non-autistic people have so much more power to actually change this than autistic people do.
Please remember that.
#Spectrum10K
I just hate how non-autistic people center their fears and personal concerns when speaking against eugenics.
Non-autistic people have so much more power to actually change this than autistic people do.
Please remember that.
#Spectrum10K
I mean damn, my entire twitter account and blog weren't things that I actively wanted to do.
I was already writing stuff just to be able to process being autistic and navigating my life.
I saw how it helped others so I kept doing it..
I was already writing stuff just to be able to process being autistic and navigating my life.
I saw how it helped others so I kept doing it..
and now it feels like I have an obligation to the community.
Don't get me wrong, I don't hate it.
But I don't really have the opportunity to think "hm this might reduce my future career opportunities so I guess I shouldn't speak up when researchers are calling me a disease.."
Don't get me wrong, I don't hate it.
But I don't really have the opportunity to think "hm this might reduce my future career opportunities so I guess I shouldn't speak up when researchers are calling me a disease.."
[Trigger Warning for eugenics, pathologization, treatment, cancer comparison]
I'm going to post quotes from that lecture Daniel Geschwin did that was posted on JULY 2021.
#Spectrum10K
The link is here -
Let's start at the beginning.
1/[25+]
I'm going to post quotes from that lecture Daniel Geschwin did that was posted on JULY 2021.
#Spectrum10K
The link is here -
Let's start at the beginning.
1/[25+]
“My focus regarding autism is translating genetic findings in autism into therapy. And today I’m going to give you a summary of genetic findings, where I think this is going” – Dan Geschwind
What kind of "therapy"? Likely treatment for autism, based on the rest of the talk.
2/
What kind of "therapy"? Likely treatment for autism, based on the rest of the talk.
2/
"At a level of a disorder like autism and other neuropsychiatric disorders, Having a toe-hold that’s genetic and more precise can also understand what we call disease pathophysiology, that is how disease actually occurs, what is the biological basis of disease."
3/
3/
I think non-autistic people think we're attacking their reputation when we speak out about issues,
when what we're actually doing is speaking out against pathologization, systemic discrimination, and lack of representation of autistic people even among NTs who claim to help us.
when what we're actually doing is speaking out against pathologization, systemic discrimination, and lack of representation of autistic people even among NTs who claim to help us.
I honestly don't think I have ever heard a non-autistic researcher or professional refer to ONLY autistic people.
It is nearly always and forever "autistic people and their families."
Why is autism the only place where the non-autistic people matter just as much? #Spectrum10K
It is nearly always and forever "autistic people and their families."
Why is autism the only place where the non-autistic people matter just as much? #Spectrum10K
Imagine a panel and they said "this panel is about women! We will have women and their families on the panel to talk about what they need the most!"
or
"We will have women and men on the panel to talk about what they need the most!"
Wouldn't people be like.. what???
or
"We will have women and men on the panel to talk about what they need the most!"
Wouldn't people be like.. what???
IMPORTANT:
SBC interview:
Talking about the 4 D's -
Disorder
Disease ("medical framework..as if it's a disease that needs treatment")
Difference
Disability
"I think all 4 of these Ds apply, depending on which aspect of autism that you're looking at." - SBC
#Spectrum10K 1/23
SBC interview:
Talking about the 4 D's -
Disorder
Disease ("medical framework..as if it's a disease that needs treatment")
Difference
Disability
"I think all 4 of these Ds apply, depending on which aspect of autism that you're looking at." - SBC
#Spectrum10K 1/23
"Sometimes autism is accompanied by conditions that the person actually suffers from, an example might be epilepsy, another might be gastrointestinal pain. And it might be appropriate to think about treatments or even cures for symptoms that are causing suffering." - SBC
2/23
2/23
"History of human progress has depended on autistic people or people with autistic traits."
(previous study in general population) - found "some genetic variants associated with a high score in systemizing associates with genes for autism" - SBC
source -
(previous study in general population) - found "some genetic variants associated with a high score in systemizing associates with genes for autism" - SBC
source -
What went wrong for #Spectrum10k and what are their options now? What can the autistic community achieve? A thread 🧵 #StopSpectrum10K #autism #ActuallyAutistic
1. The key issue for Spectrum10k is a lack of trust. Key here to remember what trust actually is: it is a combination of perceiving a third party as a) competent, b) benevolent and c) transparent. Spectrum10k has issues on all aspects:
a) Competence: is questionable from many points but probably 2 are key. For one, SBC has introduced theories of autism that have set back the field (especially female diagnoses) by decades and has added to stigma (empathy!)
Is this.. is this real right now? #Spectrum10K
"This large-scale resource will enable us to identify several genetic variants that contribute to the development of autism." 1/2
wellcome.org/grant-funding/…
"This large-scale resource will enable us to identify several genetic variants that contribute to the development of autism." 1/2
wellcome.org/grant-funding/…
"This information will allow us to better understand the biology of autism, improve on existing methods for diagnosing autism and investigate if there are genetically-defined subgroups of people with autism."
2/2
2/2
In case you haven't seen this grant summary (it is Spectrum10K related) -
@ItsEmilyKaty @commaficionado @Sara_Rose_G @Saraheboon @SueReviews
@ItsEmilyKaty @commaficionado @Sara_Rose_G @Saraheboon @SueReviews
Please share this thread widely.
I will be going through the Participant Information Sheet for autistic adults from #Spectrum10K
It says the purpose of the study is
"to identify genetic and environmental factors that contribute to autism and related conditions."
1/12
I will be going through the Participant Information Sheet for autistic adults from #Spectrum10K
It says the purpose of the study is
"to identify genetic and environmental factors that contribute to autism and related conditions."
1/12
I'm skipping diagnosis requirement, how to use the DNA kit, if it's paid (you don't get paid), and who is eligible.
This is where I'm genuinely confused.
It says you can stop participating at any time, "but we will keep information about you that we already have."
2/12
This is where I'm genuinely confused.
It says you can stop participating at any time, "but we will keep information about you that we already have."
2/12
I'm unclear if the sentence above is referring to just "information" or if it's also referring to the DNA samples, medical records, and questionnaires that were filled out.
I'm also confused if "stop being part of the study" is the same thing as withdrawing (I think it is).
3/12
I'm also confused if "stop being part of the study" is the same thing as withdrawing (I think it is).
3/12
Hold onto your hats folks,
Terrifying quotes incoming about Geschwind, the co-leader of #Spectrum10K:
"Because he studied brain development, she encouraged him to contact Portia Iverson, a mother of a boy with autism and movie-set designer who had launched Cure Autism Now."
1/5
Terrifying quotes incoming about Geschwind, the co-leader of #Spectrum10K:
"Because he studied brain development, she encouraged him to contact Portia Iverson, a mother of a boy with autism and movie-set designer who had launched Cure Autism Now."
1/5
"Shortly after Geschwind met Iverson, he became the first chair of the rapidly growing organization’s scientific review committee.
After Cure Autism Now launched AGRE, in 2001, Geschwind’s lab became increasingly involved in studying the genetics of autism."
2/5
After Cure Autism Now launched AGRE, in 2001, Geschwind’s lab became increasingly involved in studying the genetics of autism."
2/5
"In January 2008, following up on the 7q finding, Geschwindʼs team narrowed down the region to pinpoint a specific gene, Contactin Associated Protein-Like 2 (CNTNAP2), that is associated with autism and language deficits in males."
3/5
3/5
Research is tricky because most, if not all, of it can lead to terrible things if put into the wrong hands.
But the question is: how bad are the things that could happen and can they outweigh the good?
2/
But the question is: how bad are the things that could happen and can they outweigh the good?
2/
In the case of #Spectrum10K, I believe the bad is too great to continue this work. Collecting generic information about where autism comes from has a clear connection to eugenics--something autism has already seen plenty of in the past (see: Asperger's work; anti-vaxxers)
3/
3/
I know people are done tweeting about #StopSpectrum10K for today but like,
seriously I'm just so stuck on how SBC thought this was a good idea? Like I don't know who's original idea it was but he's kind of the lead (based on the team description)..
seriously I'm just so stuck on how SBC thought this was a good idea? Like I don't know who's original idea it was but he's kind of the lead (based on the team description)..
Why is the autism genome such a goldmine to geneticists?
Like yes, -intellectually- it's an interesting problem.
In actual practice, it's dystopian and absurdly dangerous in our current society.
THE FIRST PART DOES NOT TRUMP THE SECOND PART.
#Spectrum10K
#ActuallyAutistic
Like yes, -intellectually- it's an interesting problem.
In actual practice, it's dystopian and absurdly dangerous in our current society.
THE FIRST PART DOES NOT TRUMP THE SECOND PART.
#Spectrum10K
#ActuallyAutistic
I read a few tweets with the Spectrum10K hashtag and like..
I mean truly it felt like people were commentating on some alien species they wanted to dissect.
It's honestly so creepy to read about how "interesting" autistic genes are and "what a complicated problem!" it is.
I mean truly it felt like people were commentating on some alien species they wanted to dissect.
It's honestly so creepy to read about how "interesting" autistic genes are and "what a complicated problem!" it is.
If the main researchers on the #Spectrum10K project really want to do right by autistic people,
if they truly "mean well" -
This is what they would do right now.
1. Hire & consult an independent autistic researcher to create an ethics committee around this DNA database.
1/9
if they truly "mean well" -
This is what they would do right now.
1. Hire & consult an independent autistic researcher to create an ethics committee around this DNA database.
1/9
2. Listen to them and let them create an ethics committee which encompasses a diverse array of background of autistic researchers, autistic parents, autistic non-speakers.
Only autistic people.
2/9
Only autistic people.
2/9
3. Create a survey to send out to the autistic (not autism) community which asks for their research priorities, questions about their opinions and feelings on data collection of DNA, potential issues they would have with it, if they think it would be helpful, etc.
3/9
3/9
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+
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
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
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
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
That stretch of DNA is linked to autism but doesn't always cause autism. So, we need to know why not." 3/14
