BBC Piece

I saw this online and thought I would share. It seems our voices are being heard but they are still speaking for us to a certain extent:

https://www.youtube.com/watch?v=FbR3K4L2XnA

I know plenty of people likely on the spectrum, mostly creatives, that work in TV. They should ask us to make programs for them!

Parents
  • Eh hmmm it's better than the demonising shock mining junk they used to come out with 5 years ago. I really don't see why they need to do the "opposing views for "balance"" bit though. Especially saying about young NT researchers being put off doing autism research when they get called out it's like well boo hoo, you have to be pretty lazy as a researcher when being sensitive to the autistic community is as simple as consulting actually autistic people. Literallly #actuallyautistic and #nothingaboutuswithoutus have existed for years it's not like we are hiding and unwilling to proof read their stuff. To "not know" there are autistic people who can be asked to review your autism research paper before you publish it really puts the ignore in wilful ignorance.
    I find it difficult to feel sorry for the NTs doing autistic research, because they do research so of all people they should know how what they say can harm more than help, and diddums they have a well paid job when tons of us autistic people are unemployed and on the poverty line. I'm really tired of NT people sitting in their place of privilege and then whining when people refuse to centre their feelings over the lived realities of autistic people.


    I know plenty of people likely on the spectrum, mostly creatives, that work in TV. They should ask us to make programs for them!

    Exactly. And precisely why #nothingaboutuswithoutus got started.

  • Speaking as a former molecular biology/cell biology researcher, albeit on pathogen genetics not human genetics, I can state with some authority that, relative to my qualifications and level of specialist expertise, I was not notably well paid. I cannot imagine that anyone goes into a career in biological research for the money. I entered my research field because it fascinated me and, in working on a disease that affects some of the poorest people in the world, I would be doing something socially useful.

    Work like the Spectrum 10K study will be done, because it can be done; it would be better for it to be done in liberal democracies than in some totalitarian state, like China, where ethics are non-existent. Personally, I think that opposition could be effectively diffused by researchers announcing that one of the main goals of their research was to find genetic variants linked to autism that are also associated with beneficial traits useful to society. We already have limited knowledge that these exist.

Reply
  • Speaking as a former molecular biology/cell biology researcher, albeit on pathogen genetics not human genetics, I can state with some authority that, relative to my qualifications and level of specialist expertise, I was not notably well paid. I cannot imagine that anyone goes into a career in biological research for the money. I entered my research field because it fascinated me and, in working on a disease that affects some of the poorest people in the world, I would be doing something socially useful.

    Work like the Spectrum 10K study will be done, because it can be done; it would be better for it to be done in liberal democracies than in some totalitarian state, like China, where ethics are non-existent. Personally, I think that opposition could be effectively diffused by researchers announcing that one of the main goals of their research was to find genetic variants linked to autism that are also associated with beneficial traits useful to society. We already have limited knowledge that these exist.

Children
No Data