Embracing Lived Experience: A Data-Driven Look at Autistic Involvement in Autism Research
People with lived experience of a condition bring unique and valuable insights when planning research into that condition. Using data from Dimensions, Emily Alagha examines the evolution of autistic people’s involvement in autism research over the past two decades. Author’s note about identify-first language In this post, I am using identity-first language (e.g., ‘autistic person’) to honor the preference of many in the autism community who embrace their identity as an integral part of who they are. This approach reflects the values of empowerment and self-identification. The Rise of Participatory Research There’s a growing recognition in the research community that individuals with lived experience of a condition or phenomenon can offer unique and valuable insights to the design of scientific studies. This collaborative approach is often referred to as participatory research and actively involves individuals with lived experience in all stages of the research process. Dimensions