Discover and read the best of Twitter Threads about #StopSpectrum10k
Most recents (22)
If you got a DNA test for Christmas, I'm urging you to reconsider taking it. You're potentially exposing yourself to massive personal and financial risks.
And you can potentially harm discriminated-against populations including disabled people.
[thread 1/17]
#23AndMe #Ancestry
And you can potentially harm discriminated-against populations including disabled people.
[thread 1/17]
#23AndMe #Ancestry
Your immediate financial risk is if the DNA test reveals anything about your predisposition to certain conditions, when you apply for health insurance, the company can reject your claim if you don't reveal those conditions.
Then you can get charged more if you do reveal
[2/17]
Then you can get charged more if you do reveal
[2/17]
Also, if you take a test, you are giving away private biometric data not only affecting yourself, but your relatives. Now that your child knows you're pre-disposed to a condition, that can affect their insurance too
[3/17]
[3/17]
1/ "... Simon Baron-Cohen... has previously been closely associated with “debunked” theories that have led to “inaccurate & damaging stereotypes” about autistic people, such as their lack of empathy...
He strongly disputes these claims about his work."
disabilitynewsservice.com/autistic-campa…
He strongly disputes these claims about his work."
disabilitynewsservice.com/autistic-campa…
2/ The utter audacity he has to completely rewrite history, 'forget' the multiple studies, talks, interviews & books on ToM & extreme male brain.
Its his entire back catalogue.
The extremity of self-delusion & /or lying is mindboggling.
Its his entire back catalogue.
The extremity of self-delusion & /or lying is mindboggling.
3/The awful, dehumanising and monstrous things SBC has written over the years. Work embedded in the minds and framework of services & the legacy of so many left unrecognised and unsupported.
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.
Pete was a great community connecter, a good explainer and a humble learner. He was helping people who don't usually #ListenToNonspeakers realise that nonspeakers deserve our advocacy and amplification. I am angry with the leaders of @spectrum_10K who are to blame for him going.
Maybe you will say that the leaders of @Spectrum_10K are INDIRECTLY to blame. I disagree. This is squarely their fault. They enabled this, they continue to support this. They deliberately keep their ambassadors out there to say their quiet part out loud.
An organisation which finds that its representatives are not representing them well, can reel them in or dismiss them.
"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/
While I am sympathetic & support the notion of boycotting #StopSpectrum10K, reading it raises more questions than answers for me. So Aucademy is meant to be involved with this.
The statement acknowledges issues dividing autism & makes points I agree with on the topic.
Yet Aucademy platforms PDA is an ASD supporters, i.e., persons which view PDA as a subgroup/ subtype.
Yet Aucademy platforms PDA is an ASD supporters, i.e., persons which view PDA as a subgroup/ subtype.
From the main document.
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 -
Most autistic people learn to live with transactional relationships because we have been taught through experience that being ourselves has never been enough.
The above tweet was brought to you by Jeffrey Marsh's instagram video (no captions) -
instagram.com/p/CTIiWjaBkJm/
"Sitting at my lunch table is not about what can you offer me? or even what can I offer you?
or how are you going to change? How are you going to be transformed?" 1/2
instagram.com/p/CTIiWjaBkJm/
"Sitting at my lunch table is not about what can you offer me? or even what can I offer you?
or how are you going to change? How are you going to be transformed?" 1/2
"What's the transaction? No. I think I just love you, and want to give you good vibes for a few seconds..Let's not have to transform or change or self-help ourselves." - .@thejeffreymarsh 2/2
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!)
Nearly any autistic's outrage about something is diminished to social media bickering or "ridiculous" or conspiracy theories.
If people say they're helping autistic people, and we say "actually we have some concerns" we are always deemed the bad guys. #StopSpectrum10K
If people say they're helping autistic people, and we say "actually we have some concerns" we are always deemed the bad guys. #StopSpectrum10K
TW ableism, gaslighting, ABA, that senator who gaslights autistic people who have gone through ABA therapy
Oh wow, what perfect timing, here's a great example -
also "multiple degrees" Lol. She hasn't seen the #WhyDisabledPeopleDropOut hashtag, clearly
Oh wow, what perfect timing, here's a great example -
also "multiple degrees" Lol. She hasn't seen the #WhyDisabledPeopleDropOut hashtag, clearly
"classically autistic" 😂
Can I be "baroquely autistic"?
I have no idea what that would look like but I think the music would be pretty good.
Can I be "baroquely autistic"?
I have no idea what that would look like but I think the music would be pretty good.
I hate that every time some atrocious new autism-hating “autism initiative” kicks off nobody cares, nobody listens to the community that’s begging y’all to see through the bullshit.
They are trying to create a genetic database for autism. WHY DO YOU THINK?! #StopSpectrum10K
They are trying to create a genetic database for autism. WHY DO YOU THINK?! #StopSpectrum10K
The funniest part of this to me is that I suspect they’re barking up the wrong tree anyway.
Autism is the result of contextual drift between an individual and their society, is my theory. That contextual drift is informed but not defined by genetic factors.
Autism is the result of contextual drift between an individual and their society, is my theory. That contextual drift is informed but not defined by genetic factors.
But who knows, and who knows what markers they’ll find for individuals predisposed to contextual drift?
What we do know is that they’ll be used to abort autistic fetuses.
What we do know is that they’ll be used to abort autistic fetuses.
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.
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
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.
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.
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.
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
This is the really telling part, I think, of this whole thing.
"we are in the process of setting up this committee."
So they have announced this study, but they haven't actually set up the committee of people who are going to have influence as to who can use this data.
"we are in the process of setting up this committee."
So they have announced this study, but they haven't actually set up the committee of people who are going to have influence as to who can use this data.
This is actually scarier.
"We are defining not harmful as research that can POTENTIALLY improve the quality of life and wellbeing of autistic individuals."
It doesn't take into account that research that says this can have the potential to harm.
"We are defining not harmful as research that can POTENTIALLY improve the quality of life and wellbeing of autistic individuals."
It doesn't take into account that research that says this can have the potential to harm.
I'm inclined to think this answer means "we have no openly autistic researchers on our research team" -
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
#StopSpectrum10k
Quote start in the next tweet, and then my thoughts on it:
1/17
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 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
