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

ABSTRACT

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.

ABSTRACT

"Why is this topic important?" Research into the experiences of autistic people is used to inform policy, practice, and community understanding. It is important that autism research respects and reflects autistic voices. Current research often uses scientific instruments that are not consistent with our lived experience of autism. "What is the purpose of this article?" This article explains why the current approach to research­encouraging the use of existing measures and incremental change­is harmful to autism research and to autistic people. It provides examples of commonly used tools and explains why they are problematic. The article aims at encouraging a discussion into why the findings of autism research are often inconsistent with the experiences of autistic people. "What personal or professional perspectives do the authors bring to this topic?" I am an autistic adult, the mother of two autistic adults and an autism advocate. I am also an autism researcher with a background in public health and communication. "What is already known about this topic?" Academic journals aim at publishing papers that present the best and most accurate research projects. Researchers are encouraged to use tools that have been developed and tested in previous studies, because these are considered to be "reliable" (consistent) and "valid" (accurate). Researchers are discouraged from developing new measures or making major changes to existing ones. So, it can be hard to publish community-driven research that uses tools developed by autistic people. "What do the authors recommend?" I recommend that autism researchers ensure that the tools they use to study autism actually measure the experiences of autistic people. I also recommend that we stop relying on existing measures that do not make sense to autistic people and work with autistic people to develop better tools. "How will these recommendations help autistic adults now or in the future?" These recommendations will help autistic adults by making autism research more relevant and useful. Research that reflects our actual experiences will improve community understanding of autism. It will also lead to better policies and practices that meet the needs and aspirations of autistic people.