COMMENTARY Talking About Autism—Thoughts for Researchers John Elder Robison At the 2019 strategic planning meeting the International Society for Autism Research (INSAR) board discussed the question of appropriate language to be used when speaking or writing about autism or affected individuals. Board mem- bers articulated a wide range of views on this subject, making clear that there is no single simple answer. This commentary was inspired by that discussion. It is by John Elder Robison who is both an INSAR board member and an individual diag- nosed with autism. Autism Res 2019, 00: 1–3. © 2019 International Society for Autism Research, Wiley Periodicals, Inc. Lay Summary: How should researchers talk about autism? Personal reflections on writing and speaking about autism, with particular regard for affected individuals, be they autistic people, people with autism, or family members. This commen- tary is authored by John Elder Robison who is both an INSAR board member and an individual diagnosed with autism. Keywords: aging/ASD in adults; language; treatment research A person with autism, or an autistic person. Which should it be? This has been debated for years, with educators, journalists, scientists, and others seeking clarification. Academics, community members, and pundits make sweeping pronouncements, but there is no agreement. Some say person-first while others say identity-first. What is oft overlooked is that members of the population under discussion have strong opinions on this. This com- mentary expresses my views as an autistic person who writes and speaks about autism science. In clinical practice, by medical convention, person-first language is typically used. In other words, a clinician is trained to say, “an individual with ASD,” just as they would say, “a person with schizophrenia.” That differs from identity-first language such as, “a Jewish person,” or “an autistic person.” The dynamics of modern society are forcing a rethinking of this convention, even as schools continue to teach the status quo. Person-first language evolved from the longstanding idea that medical professionals had the right and duty to describe patients in the context of medicine. That meant someone was “suffering from dementia,” or “afflicted by a palsy.” They were not described in medical conversations as “a well-known attorney,” or “a leader in the Jewish community,” even if those statements were also accurate. This communication style was based on the presump- tion that medical professionals knew best, and they con- trolled the terms of conversation. That cultural attitude prevailed across many domains through much of the twentieth century. Fifty years ago, doctors saw person- first language as descriptive, and they took for granted that people did not want to suffer from the conditions ascribed to them. Today, we have a more nuanced view, especially with regard to conditions like autism, which are lifelong differences and not temporary illnesses. Proponents of person-first language made the seem- ingly upbeat argument that the form “put the person first,” but today’s interpretation is far less positive. In this time of advancing civil rights and patient/client empow- erment, we are all wise to pay attention to developing social mores, like this one. Students of language now recognize that the person- first form, by its very nature, diminishes the individual under discussion. Consider how you feel, hearing that Ron has autism and Sue suffers from depression. While person-first language can be used to describe exceptional- ity, that rarely happens in medicine. Instead it is almost always used to describe disease, disorder, disability, or deficiency. “I’m so sorry to hear that,” is a common response to person-first words. Identity-first language has the opposite effect. When we hear that George is a Cherokee or Karen is Catholic, we assume those individuals are proud to wear their respective mantles, or at least that they accept them. Identity-first therefore tends to convey individual strength where per- son-first conveys weakness. Civil rights movements and minority leaders have real- ized this, and focused on language and who controls the From the College of William & Mary, Landmark College, Springfield, Massachusetts (J.E.R.) Received February 25, 2019; accepted for publication April 23, 2019 Address for correspondence and reprints: John Elder Robison, College of William & Mary, Landmark College, 347 Page Blvd, Springfield, MA 01104. E-mail: jerobison@wm.edu Published online 00 Month 2019 in Wiley Online Library (wileyonlinelibrary.com) DOI: 10.1002/aur.2119 © 2019 International Society for Autism Research, Wiley Periodicals, Inc. INSAR Autism Research 000: 1–3, 2019 1