Autism

90 watchers

RunnyBunny Aug 2021 6:23pm, 25 Aug 2021 1,210 posts	0 RunnyBunny My Twitter is still shooting it down in flames. I've taken part.
fuzzyduck79 Aug 2021 8:41pm, 25 Aug 2021 438 posts	0 fuzzyduck79 Quite hard to remain positive about this research when you read the thoughts of other autistic people on Twitter. Chris Packham (ambassador for the study) seems to be the only one defending them that I can see. Will have a bit more of a look, but the more I think about it the less I like the bit about giving DNA and forfeiting any rights to consent about where that data can end up being used in the future.
Chimbo Aug 2021 9:09pm, 25 Aug 2021 2 posts	0 Chimbo Interesting. I don't usually follow Twitter unless specifically pointed there, but might try to make an effort and follow her - I think I have a book that she wrote, that I might one day get around to actually reading..
RunnyBunny Aug 2021 10:05am, 26 Aug 2021 1,211 posts	0 RunnyBunny You can opt out of having the data passed on to commercial organisations. I'm not too fussed about future researchers including the data in analysis, but I don't want it sold on unless I've been paid for it.
jelly (limegreenjelly) Aug 2021 2:02pm, 26 Aug 2021 1,222 posts	0 jelly (limegreenjelly) I’m lost Chimbo sorry who are you going to follow?
RooA Aug 2021 2:28pm, 26 Aug 2021 1,424 posts	0 RooA I think Chimbo means the person tweeting in fuzzyduck's link, jelly.
jelly (limegreenjelly) Aug 2021 2:29pm, 26 Aug 2021 1,225 posts	0 jelly (limegreenjelly) I think that’s why I’m confused because I thought Chris Packham was the guy off autumn watch on the telly!
Chimbo Aug 2021 2:40pm, 26 Aug 2021 3 posts	0 Chimbo Haha, no, not Chris Packham - Roo's quite correct; I meant Sara Gibbs. I'm usually late to the game, and in this particular case I completely failed to notice that the post I was replying to already had two further posts, sorry for confusion! 😂😳
fuzzyduck79 Aug 2021 11:14pm, 28 Aug 2021 441 posts	0 fuzzyduck79 This seems a reasonable summary of where it feels like the autistic community (or the ones who post on twitter) stand on #Spectrum10k : twitter.com Not really seeing much argument in favour of the study still. But I'm still expecting them to get DNA from a few thousand people, who either haven't seen these arguments or just don't agree.
swittle Oct 2021 10:46am, 17 Oct 2021 80,486 posts	0 swittle BBC Radio 4 today. 'A Point Of View'. 10 min. Sara Wheeler on why it's vital that research into neurodiversity is better understood. bbc.co.uk