Measuring the Wrong Thing the Right Way? Time to Rethink Autism Research Tools

Awareness and understanding of autism are increasing, sometimes in small incremental steps and sometimes through paradigm shifts. Much of this is driven by autistic advocates, whose voices are increasingly recognized as experts in their own lived experiences. The growing presence of autistic people in autism research—as participants, advisors, and (co)researchers—has brought about changes in the quality and relevance of autism research. We are seeing more studies by autistic autism researchers, more studies on issues of importance to autistic people, and more studies utilizing methodologies that resonate with autistic people. However, there remains a reliance on measures that are technically “valid” and “reliable” rather than relevant. As long as this is the case, we will continue to see studies published that “explain autism” in ways that do not reflect autistic experiences. Autism research is still making incremental changes and it is time for a paradigm shift.

© Mary Ann Liebert, Inc.