Avoid using Ableist language in autism research

Key points

  • Autism researchers often use the language of aptitudeists to marginalize people with autism by assuming that people with disabilities are not as good as non-disabled people.
  • Autism researchers can ask themselves a series of questions to determine whether their language is competent.

Discrimination against persons with disabilities takes many forms-and it is not always intentional.According to a recently published analysis, autism researchers often use the language of aptitudeists Autism and adulthood.

The U.S. Centers for Disease Control and Prevention (CDC) first estimated the prevalence of autism among American adults in early 2020. It is estimated that about 1 in 45 adults (2.2%) has autism.A 2016 child autism survey found that 1 in 68 (1.5%) 8-year-old children was determined to have autism.

Although adults with autism (including researchers and laymen) have been discussing and writing articles about the language of capable people for many years, non-autistic researchers may not be familiar with their work.the goal of Autism and adulthood The article is to ensure that all researchers are on the same page.

What this means to you

Describing autism as a bad thing that needs to be repaired has a negative impact on how society views and treats people with autism, and may even have an adverse effect on how people with autism view themselves. By making positive changes to the way we all write and talk about autism, we can help create a more compassionate and inclusive society.

What is competency?

Dr. Kristen Bottema-Beutel, associate professor at Boston College’s Lynch School of Education and Human Development, explained: “We define a capable language as any language that, when used, will marginalize people with disabilities.”

Bottema-Beutel, he is the main author of this book Autism and adulthood The article said that some examples refer to people with autism as “burden” or “disease” and point out that the context of the words used is important to determine whether the language is a capable person.

Kristen Bottema-Beutel, PhD

If researchers try to talk, write, and communicate in an incompetent way, the ideology of autism will change, which may be a step towards reducing the marginalization of the autistic population.

— Dr. Kristen Bottema-Beutel

Do you have strong language skills?

Bottema-Beutel and her co-authors provide many questions that autism researchers can ask themselves to determine if their language is capable (these steps can be applied to researchers studying a range of disabilities).

  1. If I talk to an autistic person, will I use this language?
  2. Does my language imply that people with autism are inherently inferior to those without autism, or assert that they lack the basic elements of life?
  3. Does my language imply that autism needs to be repaired, cured, controlled or avoided?
  4. When describing educational support, will my language unnecessarily medicalize autism?
  5. Does my language imply to laymen that the goal of my research is to control and normalize behavior, rather than to give people with autism more autonomy and agency power as reasonably possible?
  6. Do I use specific words or phrases just because it is a tradition in my field, even if people with autism say that this language may bring stigma?
  7. Does my language unnecessarily “other” autistic patients by implying that the characteristics of autism have nothing to do with the characteristics of non-autistic patients?

Bigger picture

These efforts are all part of a larger picture. “If researchers try to talk, write, and communicate in an incompetent way, the ideology of autism will change,” Bottema-Beutel said. “This may be a step towards reducing the marginalization of people with autism.”

Bottema-Beutel points out that professionals hired to support people with autism often receive guidance from researchers that are designed to help. However, if it is incorporated into and continues the ability ideology, it will not help people with autism.

Paige Siper, PhD

Using competent language can dehumanize people with ASD and imply low self-esteem, which may lead to discrimination. Neurodiversity plays an important role in society, and using conscious language to describe and portray differences is essential to creating a more acceptable world.

— Paige Siper, PhD

Even if you are not a habitual reader of scientific research, it plays a vital role in the cognition of health conditions and neurodevelopmental disorders (such as autism) in mainstream culture.

Dr. Paige Siper, Chief Psychologist at the Siever Autism Research and Treatment Center at Icahn School of Medicine, Mount Sinai, said: “Avoiding competent language when reporting research results can eliminate the stigma of ASD and promote the acceptance and treatment of ASD patients. tolerate.”

“Using the language of aptitudeists dehumanizes people with ASD and implies low self-esteem, which can lead to discrimination,” Siper continued. “Neurological diversity plays a meaningful role in society, and using conscious language to describe and portray differences is essential to creating a more acceptable world.”

Useful resources

  • Autism Source, the online resource database of the Autism Society, is a comprehensive list of services and support related to autism across the United States.
  • The New Zealand website Altogether Autism Information Hub provides information on autism at all life stages from early childhood to adulthood.
  • Autism Now is an initiative of The Arc and the Administration of Intellectual and Developmental Disabilities (AIDD), a national resource and information center for Americans with ASD and their families.