In The Politics of Autism, I discuss autism research -- and the opinions of autistic people about research priorities.
Hari Srinivasan at Time:
Just as psychology research had its WEIRD (“western, educated, industrialized, rich and democratic”) sampling bias, autism research has not only a WEIRD sampling bias, but also has essentially oversampled the same, narrow band of what are considered the easily “researchable autistics,” and expected those findings (as well as the applications and interventions that resulted from them) to apply to everyone.
But the spectrum is far more diverse and heterogeneous than we realize. Sure enough, even as I review past autism research as part of my studies, I look at the autistic participant profiles and the truth is that a majority don’t represent autistics like me. Autism research participant selection is filled with implicit and explicit exclusionary criteria, such as IQ cut-offs, ability to be able to sit still, to perform tasks and engage, to respond orally and not have co-occurring or complex conditions. But why should IQ be an exclusionary criterion when it is mutable and has been historically problematic for marginalized groups? I have to then wonder how findings from studies with so many exclusionary criteria would benefit autistics like me.