Avoiding Ableist Language in Autism Research

Discrimination against people with disabilities takes many forms–and it’s not always intentional. Autism researchers often use ableist language, according to a recent analysis published in Autism and Adulthood.

The first estimate of the prevalence of autism in American adults, carried out by the Centers for Disease Control and Prevention (CDC) in early 2020, estimates that about 1 in 45 (2.2%) adults are on the autism spectrum. And a 2016 survey of autism in children found that 1 in 68 (1.5%) 8-year-olds were identified as having autism.

While autistic adults (including researchers and laypeople) have been discussing and writing about ableist language for many years, non-autistic autism researchers may not be acquainted with their work. The purpose of the Autism and Adulthood article is to ensure that all researchers are on the same page.

What Is Ableism?

“We define ableist language as any language that, when used, has the effect of marginalizing disabled people,” explains Kristen Bottema-Beutel, PhD, an associate professor at Lynch School of Education and Human Development at Boston College.

Bottema-Beutel, who was the lead author of the Autism and Adulthood article, says examples are referring to autistic people as a “burden” or having a “disease,” and points out that the context in which words are used is important in determining whether language is ableist. 

Is Language Ableist?

Bottema-Beutel and her co-authors provide a number of questions autism researchers can ask themselves to determine if their language is ableist (and these steps can be adapted for researchers who study a range of disabilities).

1. Would I use this language if I were in a conversation with an autistic person?
2. Does my language suggest that autistic people are inherently inferior to non-autistic people or assert that they lack something fundamental to being human?
3. Does my language suggest that autism is something to be fixed, cured, controlled, or avoided?
4. Does my language unnecessarily medicalize autism when describing educational supports?
5. Does my language suggest to laypeople that the goal of my research is behavioral control and normalization, rather than granting as much autonomy and agency to autistic people as reasonably possible?
6. Am I using particular words or phrases solely because it is a tradition in my field, even though autistic people have expressed that such language can be stigmatizing?
7. Does my language unnecessarily ‘‘other’’ autistic people by suggesting that characteristics of autism bear no relationships to characteristics of non-autistic people?

The Bigger Picture

These efforts are all part of a much bigger picture. “If researchers make efforts to talk, write, and communicate in ways that are not ableist, ideologies about autism will shift,” Bottema-Beutel says. “This can be a step toward reducing the marginalization of autistic people.”

Bottema-Beutel points out that professionals who are employed to support autistic people often receive guidance from researchers, which is designed to be helpful. But it’s not going to be helpful for autistic people if it is couched in, and perpetuates, ableist ideologies.

Even if you're not a habitual reader of scientific research, it plays a crucial role in the perception of health conditions and neurodevelopmental disabilities, like autism, in mainstream culture.

"Avoiding ableist language when reporting research findings destigmatizes ASD while promoting acceptance and inclusion of people with ASD," says Paige Siper, PhD, chief psychologist at the Seaver Autism Center for Research and Treatment at the Icahn School of Medicine at Mount Sinai.

"The use of ableist language dehumanizes individuals with ASD and suggests inferiority, which can result in discrimination," Siper continues. "Neurodiversity plays a meaningful role in society, and the use of intentional language to describe and portray differences is critical to create a more accepting world."