In the decades since autism had a “clinical” definition in the 1980s, many have advocated for understanding autism as a normal part of the neurodiversity spectrum, rather than a “problem” that needs to be “solved”. Nonetheless, in the research literature, autism is often described using medical or pathological language.
In an effort to reduce the negative impact of autism research on relevant groups, researchers published an article in the Sept. 29 issue of Trends in Neurosciences, a Cell Press journal , sets out how scientists and researchers should talk about autism at work.
The authors write: “Evolutions in understanding of autism also reflect shifts in language use in the context of research. Historically, most autism research has been conducted in the absence of autism. conducted with the participation of people with autism. These studies used medicalized, pathological, and deficit-based language (eg, disorder, injury, therapy), as well as human-centered language (eg, children with autism) to describe autism and autism autistic patients.”
The authors of the paper include Ruth Monk, an autism researcher at the University of Auckland, New Zealand, autism researcher at the Telethon Children’s Research Institute in Australia, Andrew Whitehouse, a professor at the University of Western Australia, and Victoria University of Wellington, New Zealand, education Hannah Waddington, Senior Lecturer in Psychology.
The authors have compiled a table of potentially offensive language and preferred alternatives from several large surveys of autism groups.
For example, “autism spectrum disorder” should be replaced with “lonely”, “people with autism” should be replaced with “lonely” and “non-autistic” “Normal”, and “Coexistence” replaces “Comorbidity”.
The authors write: “People with autism gain relevant expertise through first-hand life experience. As a result, it is becoming more common to recognize that the term used to refer to autism Terms and autism should prioritize the views and preferences of autistic people themselves. Several large surveys have been conducted by researchers and advocates to explore these preferences.”
The authors also advocate for a change in the way autism is researched. “Specifically, more and more research is taking a participatory and collaborative approach, aiming to reduce the power imbalance between researchers and the autistic community, and to ensure that people with autism are involved in the entire research process,” they wrote. /p>
Read the original paper: https://www.cell.com/trends/neurosciences/fulltext/S0166-2236(22)00166-7
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