I found this article in Spectrum News about autism research fascinating and as somebody who spent 20 years as a market researcher I think a lot of what William Mandy writes is spot on.

He shares “It is rare these days to find an autism researcher who does not proclaim the value of advice from the autism community. In fact, consultations with people on the spectrum and their families are now the norm in autism research.

This new normal reflects a growing consensus that these conversations can help generate knowledge that is useful and meaningful to autistic people and their families.

There are also financial incentives to engage with the autism community: Most funders require evidence that autistic people and their families provided input on a proposed project.

Despite the widespread appreciation that these partnerships are important, there is limited understanding of how they should function. This raises the risk of tokenism, in which there is an illusion of collaboration without autistic people having any real influence on the research that affects them.

You can read the full article here.