Since the “clinical” definition of autism in the 1980s, many scientists have advocated understanding autism as a normal part of the neurodiversity spectrum, rather than a “problem” that needs to be “solved.” Nonetheless, the research literature often describes autism in medicalized, pathological language.

To reduce the negative impact of autism research on relevant groups, scientists have studied how autism should be talked about at work. The research was recently published in Trends in Neuroscience.

"While understanding of autism has evolved, so has the use of language to study. Historically, most autism research has been conducted without the participation of people with autism. These studies use Medicalization, pathology, and deficit-based language (eg, disorders, impairments, treatments), and human-centered language (eg, children with autism) to describe autism and people with autism." Autism Research, University of Auckland, New Zealand Officer Ruth Monk said.

Co-authors of the paper also include autism researcher at the Children's Research Institute and professor at the University of Western Australia, Andrew Whitehouse, and Hannah Waddington, senior lecturer in educational psychology at Victoria University of Wellington, New Zealand. The authors compiled a table of potentially offensive language and preferred alternatives from several large surveys of people with autism. For example, replace "autism spectrum disorder" with "autism", "autistic" with "autistic", "normal" with "non-autistic", and "onset" with "coexist".

They argue that "people with autism gain relevant expertise through first-hand life experience. As a result, it is increasingly recognized that terminology used to refer to autism and its patients should prioritize the patient's own views and Preferences. Researchers and advocates have conducted several large surveys exploring these preferences.”

The authors also advocate for changing the way autism is researched. "Specifically, more and more research is taking a participatory and collaborative approach, aiming to ensure that people with autism are involved throughout the research process and reduce the power imbalance between researchers and the autistic community," they wrote.

Related paper information:

https://doi.org/10.1016/j.tins.2022.08.009

(Original title "Autism research needs to be wary of offensive language")