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Good news- Spectrum 10k study has been postponed

Ausomely Autistic

I know there have been some concerns about Spectrum 10k shared on this forum. There is a now a positive outcome thanks the passion of autistic advocates, parents and the Stop Spectrum 10k petition. The Spectrum 10k study has been postponed and will include discussion with autistic people. This shows the strength of the autistic community and the value of innate autistic traits such as passion, hyper focus and determination.

Link to victory message on the petition:

https://www.change.org/p/university-of-cambridge-stop-spectrum-10k/u/29588536

Parents

  • Because such studies can be done, they will be done. This being acknowledged, the question for autism advocacy groups and the autistic community is, 'who do you want to do the research?' Personally, I would rather it be done by relatively unbiased academics in a country which enforces ethical standards, than by a commercial enterprise, an autism hostile entity (such as Autism Speaks), or in a country with an appalling human rights record, like China.

  • in reply to Martin

    I would rather it be done with full, advance consultation and involvement with autistic people and preferably led by autistic researchers who genuinely have our interests at heart.  I'd also prefer it to look at areas of immediate concern and help to autistic people, rather than give yet more focus to identifying genes (as if they're going to be able to pare it down to just a few genes anyway). 

    Plus, for me at least, it's more about each of our personal decisions about whether to be involved or not and ensuring that these decisions are as well informed as possible.  Clearly I'm not sending them my DNA nor that of any family members but I accept that others might look at the arguments and counter arguments and  come to a different conclusion.     

  • in reply to Jenny Butterfly
    Jenny Butterfly said:
    I would rather it be done with full, advance consultation and involvement with autistic people and preferably led by autistic researchers who genuinely have our interests at heart.  I'd also prefer it to look at areas of immediate concern and help to autistic people, rather than give yet more focus to identifying genes (as if they're going to be able to pare it down to just a few genes anyway). 

    Yes exactly, autistic led research is what we need because then our needs and interests would be at the core of the study. We are the experts on our own autistic experience and therefore we know what research would be of benefit to our community. 

    I agree with the research areas listed in this article below: I would also like more research into the importance of community for autistic people.

    https://autistic-village.com/2021/11/02/why-bad-research-like-spectrum-10k-should-no-longer-get-the-green-light-and-what-should/

    What kind of research focus would you prefer?

Reply Children
  • in reply to Jenny Butterfly
    Jenny Butterfly said:
    I would particularly welcome more research into trauma and believe this would probably  also at least touch on mental health and suicide too.  If they could zoom in on masking, burnout and minority stress too, that'd be great (although I think that Monique Botha, Amy Pearson and Kieran Rose are already doing great research in these areas). 

    I think a lot of other autistics including myself would agree with you about these research areas. All the researchers you mention do brilliant work.  Kieran Rose has said before non autistic researchers have a simplified and inaccurate understanding of masking.

    Jenny Butterfly said:
    I'd also like to see more focus on education, workplace inclusion, later life and the positives of being autistic, which are so often completely overlooked but, as has been mentioned before, might be closely if not inextricably linked to some of the weaker areas. 

    Great ideas that would actually directly benefit our community. I think there should be research on the impact of a positive autistic identity for mental health and the importance of identification either late or early for mental health. By understanding positives of being autistic, researchers can better understand how to approach and manage mental health concerns for our community and how to recover from experiences like autistic burnout.

  • in reply to Ausomely Autistic

    I would particularly welcome more research into trauma and believe this would probably  also at least touch on mental health and suicide too.  If they could zoom in on masking, burnout and minority stress too, that'd be great (although I think that Monique Botha, Amy Pearson and Kieran Rose are already doing great research in these areas). 

    I'd also like to see more focus on education, workplace inclusion, later life and the positives of being autistic, which are so often completely overlooked but, as has been mentioned before, might be closely if not inextricably linked to some of the weaker areas. 

    Some emphasis on families, especially inter- generational trauma and family dynamics would also be very useful, I think.