Thread by @AutSciPerson

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

"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

"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 -

"We want to invite 10 thousand autistic people across the UK to take part in this study. [explains DNA and questionnaires]. "If they don't have these skills to fill in tests on a computer, on the internet, their parents can do it with them or do these tests on their behalf." 4/23

#Spectrum10K explanation by SBC himself:
"This project is going to be collecting a lot of information on the skills and challenges that autistic people have. We'll then have DNA samples that we can relate their DNA profiles back to their DNA." 5/23

"We'll also be collecting information about their experience - what kinds of interventions have they had, what kinds of educational programs have they been part of," 6/23

"and the whole project is to try to understand how come autistic people are really so different to each other in terms of their outcomes. Because we know that some autistic people end up with poor mental health..other medical conditions..epilepsy for example." 7/23

"The range of outcomes is quite broad and what we're trying to do with this project is understand the causes of all of this variation in the autism spectrum.

The main hypothesis is that there are going to be subgroups within the spectrum." 8/23

"And at the moment we just have this single word autism, it's this umbrella term..and we know there must be subgroups within the autism population. The hope is that if we have the genetic information and the experience or environmental information," 9/23

" we'll be able to identify subgroups, and that that might be kind of more meaningful than just saying you're autistic. If you think about other conditions in medicine, you try to be more fine grained..you talk about Type 1 or Type 2 or Type 3 or whatever." 10/23

" In autism we might maybe need that too. Well if you're Type 1, you might benefit from this type of intervention, whereas Type 2, might steer you to another one.
Interviewer asked if they will look for a cure for autism
11/23

"We’re not trying to cure autism itself. Autism is part of the person. We don’t want to kind of change who the person is. Autism is part of their, partly genetic make up. We already know that autism is strongly genetic and that it runs in families," 12/23

"so we’re not really trying to cure autism itself. If there are symptoms which the person is really struggling with..epilepsy..then cure may well be the right thing to be aiming for." 13/23

Who is working on the project:
"The team includes both geneticists, psychologists, people who can work with data, data scientists. We’re working quite closely with the Sanger center in Cambridge where the human genome was unravelled." 14/23

Apparently it's "top scientists" who - you guessed it- don't even know anything about autism!!

"We’re very pleased that the world’s top scientists are finally looking at autism to kind of further our understanding of it." 15/23

On consent:
“If you’re under 18, then we’re encouraging parents to do this on behalf of their child. If someone is autistic and has learning difficulties, they may need help to do that as well, like a parent or a proxy to do it." 16/23

Publishing:
"I would imagine that in the first year we’ll have the first results and we’ll be publishing them as you say. So the usual thing is results get published in scientific journals, but we will also be making a more publicly accessible," 17/23

"so we’ll be putting the results up on our website for example in more accessible forms so that it’s not just hidden within a lot of technical jargon.” 18/23

Next part is about the Collaboration THEY DON'T MENTION In the Participation Sheet or Consent Forms of #Spectrum10K :

"What we’re also going to be doing is joining forces with colleagues internationally. So we’ll have our collection of 10,000 DNA samples with all the psychological data that goes with it." 19/23

"Again with the consent of the participants we can then donate that information to a more international collection because sometimes you can’t really sort of see what’s causing what unless you have really huge population study." 20/23

"The goal really is to work with colleagues in the States and Australia and Sweden and many countries to kind of join forces so we can be looking at 100,000 autistic people, not just 10,000. This is like the UK’s effort to be a part of something very international." - SBC 21/23

So .@sbaroncohen literally admits that the main goal is to combine these 10k samples with other databases across the world and this is Not Once Mentioned!!
In the consent forms or participation information sheet!
Anywhere!

How can you get consent when you don't tell them?!
22/23

Based on this interview,

this study is absolutely simply an easy way for them to combine multiple datasets to do a much larger study after doing #Spectrum10K

which may involve (quoting SBC here)

trying to "identify subgroups" of autistic people!!
#StopSpectrum10K

23/23

@sbaroncohen TW SBC, Spectrum 10K stuff, consent forms
@AnnMemmott @commaficionado @ItsEmilyKaty @Sara_Rose_G

https://twitter.com/AutSciPerson/status/1432224898957680642?s=20

https://twitter.com/__alice__r__/status/1432224113821507588?s=20