High-profile autism genetics project paused amid backlash:
But soon after the study’s high-profile launch on 24 August, autistic people and some ASD researchers expressed concern that it had gone ahead without meaningfully consulting the autism community. Fears about the sharing of genetic data and an alleged failure to properly explain the benefits of the research have been raised by a group called Boycott Spectrum 10K, which is led by autistic people. The group plans to protest outside the ARC premises in Cambridge in October. A separate petition against the study gathered more than 5,000 signatures.
Damian Milton, a researcher in intellectual and developmental disabilities at the University of Kent in Canterbury, UK, is one of those who signed the Boycott Spectrum 10K petition. Milton has been diagnosed with Asperger’s syndrome, a form of ASD. He says it is not clear how the study will improve participants’ well-being, and its “aim seems to be more about collecting DNA samples and data sharing”.
As a result of the backlash, the Spectrum 10K team paused the study on 10 September, apologized for causing distress, and promised a deeper consultation with autistic people and their families.
I assume they’ll restart, but this sort of research will happen somewhere. Autism is a reasonably heritable trait, and many of the people with autism are not “high functioning.”
Pathetic.
Stupid and frightening. I also get the feeling that this will become commonplace over the next ten years.
Doesn’t every university president give a speech saying something like, “All applied research, all research that is immediately useful, relies on past pure research, research that did not have an obvious use, that may have seemed completely useless at the time. Therefore, pure research should be generously funded. Etc. Etc. Etc. [or as Greta Thunberg would say, ‘Blah Blah Blah.’]”?
watched a few episodes of Netflix’s “Love on the Spectrum”…pretty good show!
Its October now, maybe a new open thread?
“many of the people with autism are not ‘high functioning.’”
Ah, but in the world of neuro-atypical/neuro-diverse advocates, everyone, like the children of Lake Wobegone, is above average! (See also, e.g., a lot of reporting on Down Syndrome these days, from which one would conclude that trisomy 21 is practically the golden path to becoming high school valedictorian.)
While average asperger’s fellow is more intelligent than the average neurotypical individual, the average neurotypical individual is more intelligent than the average non-asperger’s individual by a considerable margin. What percentage of all autistic people are specifically in the asperger’s group?
By non-asperger’s I meant autistic non-asperger’s.
Da Thang: “the average neurotypical individual is more intelligent than the average non-asperger’s individual by a considerable margin.”
Using the DSM-IV terminology, the people with Infantile Autism were usually less inteligent than neurotypicals; but I think around 80% of the autistic people have, nor Asperger neither Infantile Autism, but PDD/NOS. And I am not sure if people with PDD/NOS were, in average, noticible less inteligent than neurotypicals
I only know about some studies that looked at autistic people as a group.
https://pubmed.ncbi.nlm.nih.gov/21272389/
Recent assessments yield results higher than past ones probably due to an increased inclusion of aspergers but the overall (bearing mind all of the different subsets this encompasses) is still below average.