It is rare these days to find an autism researcher who does not proclaim the value of advice from the autism community.
In fact, consultation with autistic people and their families is 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.
To improve the lives of autistic people and their families, researchers must interest themselves in what autistic people and their families truly need and want.
Only by engaging in sincere and sometimes challenging discussions can we ensure that the field is making real progress.