Good news- Spectrum 10k study has been postponed

What this says to me, above all else, is that the spectrum model of autism  is more problematic than useful.There are very differing needs between those against such research, and those at  the other end of  the spectrum. Then there's the vast largely overlooked 'middle' to which I belong . Is there really much difference  between non autistic people dominating research into autism and the highly capable end of autistic spectrum seeking to do the same, with only  a passing nod to those less able?

If you're doing well why would you want your 'gifts' taken away? You quite understandably want to keep them. You also quite naturally want to break down any barriers that prevent you making the best use of them.

If you're the parent of a child/adult at the other end of the spectrum you naturally want life to be much better for your son or daughter. The kind of things that would be beneficial for the highly capable end of the spectrum, are next to useless in improving the lives of those at the opposite end. 

IMO there needs to be a radical rethink re the 'spectrum' approach/ model  .

Ultimately you can only speak for yourself. The wider Autistic community has embraced the spectrum model for a good reason. There is no "highly capabale" "end" of the spectrum because the spectrum isn't linear.

https://the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

https://autisticadvocacy.org/2021/12/functioning-labels-harm-autistic-people/

Also there are non-autistic people with the same "gifts" as me who experience none of my autistic issues but I do not need my autism to be "cured" I need acceptance to improve my career prospects and quality of life - acceptance which is free and doesn't require a scientist. I also want the same for my kid (who has more issues than I), and tbh  I don't think it's unreasonable to say I trust a fellow autist not to look down on me as subhuman or a guineapig. People forget that we were victims of the attemted purge of "undesirables" in the 1930s and 40s too which was also in aid of a normative agenda hidden under the poisoned plattitude of "for your own good".

I would also be remiss if I didn't caution people that it is inherently flawed to place a person's value on ability. And if for whatever reason an autistic person cannot give consent then all the more reason to take issue with the study. It is a huge red flag that autistic people are being viewed as lesser when we are having our right to autonomy denied:

"the project is encouraging parents and carers to sign over DNA samples of children and adults who cannot consent for themselves,"
https://aucademy.co.uk/category/boycott-pectrum-10k/

Ultimately you can only speak for yourself. The wider Autistic community has embraced the spectrum model for a good reason. There is no "highly capabale" "end" of the spectrum because the spectrum isn't linear.

https://the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

https://autisticadvocacy.org/2021/12/functioning-labels-harm-autistic-people/

Also there are non-autistic people with the same "gifts" as me who experience none of my autistic issues but I do not need my autism to be "cured" I need acceptance to improve my career prospects and quality of life - acceptance which is free and doesn't require a scientist. I also want the same for my kid (who has more issues than I), and tbh  I don't think it's unreasonable to say I trust a fellow autist not to look down on me as subhuman or a guineapig. People forget that we were victims of the attemted purge of "undesirables" in the 1930s and 40s too which was also in aid of a normative agenda hidden under the poisoned plattitude of "for your own good".

I would also be remiss if I didn't caution people that it is inherently flawed to place a person's value on ability. And if for whatever reason an autistic person cannot give consent then all the more reason to take issue with the study. It is a huge red flag that autistic people are being viewed as lesser when we are having our right to autonomy denied:

"the project is encouraging parents and carers to sign over DNA samples of children and adults who cannot consent for themselves,"
https://aucademy.co.uk/category/boycott-pectrum-10k/

Steven said:

they want only 'the brightest and the best'

I hate this sort of rhetoric. It reminds me as well of their saying they want to help the most in need (and the second most in need can go jump)

There is indeed.  But it's not at all clear that the researchers are thinking like that and certainly a couple of them have made worrying statements in the recent past, as is highlighted in the video. 

I am just worried that Simon Baron-Cohen's public remarks - from his nonchalant acceptance that parents will soon be able to abort autistic children, to his comments about 'saving' maths prodigies - are emblematic of an alarming, inhumane theme amongst authorities in the UK. It's worryingly reminiscent of the way Goverment ministers speak about immigration: they want only 'the brightest and the best' refugees (not to mention the most wealthy) and, apparently, the rest can drown. It's survival of those these discredited authorities deem fittest and, as such, should alarm other groups of people - for they could be the next to be targeted - not just autistic folks.

There's a vast difference between not using ability to say that person A  is of greater value than person B, that I totally agree with, and denying that some are better able to cope with independent living than others- i.e are more capable.

🐝 Bees 🐝 (they/them) Autism resources in bio #stoptheshock #NothingAboutUsWithoutUs said:

I would also be remiss if I didn't caution people that it is inherently flawed to place a person's value on ability.

Massively important point. 

🐝 Bees 🐝 (they/them) Autism resources in bio #stoptheshock #NothingAboutUsWithoutUs said:

"the project is encouraging parents and carers to sign over DNA samples of children and adults who cannot consent for themselves,"

This is likely to skew results away from looking at autistics who are capable of informed consent and towards those who are not. Not a useful feature for experimental design towards gaining unbiased results.

Great reply, thanks for educating on behalf of the community.