Spectrum 10k

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Seagull
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Spectrum 10k

Post by Seagull » Tue Sep 07, 2021 8:25 am

Simon Baron-Cohen is leading a new project to "investigate genetic and environmental factors that contribute to the wellbeing of autistic individuals and their families" - and is looking to recruit 10,000 autistic people to take part. Spectrum 10k.

Autistic Twitter has not taken well to this. See #StopSpectrum10k. Discussion here.

I don't have an autism diagnosis, but I have many autistic traits. I did actually once spit in a bottle and complete an autism screening questionnaire for S B-C for a study that called for maths graduates with/without formal autism diagnoses. Unfortunately I'm not sure I got everything sent back in the post in time, since dealing with that kind of admin is something I struggle with for reasons I can't logically explain :? . But at the time I didn't have any qualms about taking part or the aims of the study.

I'm not a researcher, I'm not heavily involved in any autistic community, and I don't know a lot about genetic research. I'm interested to know whether anyone on here has a view on any of this? What could the research team have done differently? Is the project now doomed? Is there a more ethical path for this type of study? A strongly represented point of view seems to be that genetic research of this type shouldn't take place at all because it could, in some futures, lead to eugenics. This problem can't be unique to autism research - are there similar examples in other areas?

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Boustrophedon
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Re: Spectrum 10k

Post by Boustrophedon » Wed Sep 08, 2021 10:47 am

Autism has become factional and politicised in the same way that that any debate on sexual pilitics has; either you embrace the groupthink way of speaking or all hell decends.
Science unfortunately does not fit into the current autism zeitgeist.
As I see it, a "very high functioning" group of autistic individuals has essentially monopolised the debate from their point of view and seem unaware of the autistic population who are not able to function in our society and are thus to some extent hidden away.
None of the children I taught whould have been able to pen the response in the quoted discussion so it is hardly representative.
Put on your headlight and sound your horn if people get in the way. (Innes)

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Seagull
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Re: Spectrum 10k

Post by Seagull » Wed Sep 08, 2021 3:37 pm

Thanks - you've described very clearly what I thought I was seeing too. I wish it wasn't like that.

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Boustrophedon
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Re: Spectrum 10k

Post by Boustrophedon » Wed Sep 08, 2021 4:16 pm

To some extent this trend is also driven by the "You can't tell me anything about autism, I have an autistic child" parents and the "You're NT so you can't say anything" brigade.

Well I have a grown up autistic child, I am anything but NT* and spent 27 years in education, the last five in SEN. But apparently none of that counts for anything.

*Neuro Typical.
Put on your headlight and sound your horn if people get in the way. (Innes)

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