Blog

 

“Autistic person” or “person with autism”: Is one more correct?

 
 

CAR wants to know your thoughts, and so does this Scientific Journal

The language we use to refer to or describe ourselves and others is a highly personal choice, and if you’re reading this blog, you are probably aware of the debate in the autism community over identity-first (“autistic person”) versus person-first (“person with autism”) language. The discussion has gained momentum and attention in recent years, particularly as more adults on the autism spectrum have come of age and are advocating to have their own voices represented.

Many in the autism community have shifted toward a preference for identity first language, explaining that their autism is an inextricable piece of their identity and personality. Saying “I’m autistic” or she’s autistic” is no different than saying “I’m nearsighted” or “she’s shy”. Many who prefer identity-first language point out that saying that a person “has autism” or students “with autism” sound as if autism is a disease or illness that needs to be fixed. They feel that separating the diagnosis from the person contributes a stigma to autism. *

On the other hand, there are many parents, loved ones, and professionals who feel strongly that the person –first “person/ people/ individual with autism” language is the most respectful way to refer to individuals on the autism spectrum. They feel this language choice emphasizes the value of the person’s humanity over any other quality that might be attributed to them. They do not consider autism to be part of an individual’s identity and do not want to presume that someone wants to be referred to as “Autistic.”  

There have been a handful of recent research studies on language preference, including one led by Lorcan Kenny of Autistica, which surveyed nearly 3,500 autistic individuals, their parents, caregivers, friends, family and professionals working with people on the spectrum. That study found that  the term “autistic” was preferred by the majority of autistic adults, family, friends, and parents- while professionals chose “person with autism” as the phrase they preferred. The research team also discovered that while there were clear preferences towards identity- first or person-first language, most agreed that “on the autism spectrum” and other neutral terms were also endorsed by most stakeholders.

The conversation about person-first versus identity-first language was a focal point of this year’s INSAR conference, and it continues to be a lively topic among the researchers, clinicians, and families here at CAR. Most of us agree that in one on one settings, it’s most appropriate to follow the lead of the individual and family members. But what about how we refer to ASD in our public speaking presentations or in research articles?

CAR researcher and clinical psychologist Benjamin Yerys, PhD, made a conscious decision last fall to use identity-first language in all of his professional talks and writing, feeling it was his responsibility to accurately represent and include the opinions of the autistic community. However, when it came to submitting his research articles to scientific journals, he found himself hamstrung to academic style guidelines set by the journals, which default to using person-first language.  “Reading Lorcan Kenny and colleagues’ paper on language preference really changed how I thought about person-first language, but I didn’t know how to integrate identity-first language into journals that had clear guidelines against its use. However, after reading a paper by Elizabeth Pellicano last fall – the senior author on Lorcan Kenny’s paper – I saw how she gracefully introduced identity first language into her paper and I wanted to follow her example.”

One day in late 2018, Dr. Yerys decided to try an experiment. He was in the middle of making revisions to a paper that had been accepted to the Journal of the Academy of Child and Adolescent Psychiatry, when he decided to flip the script. “During the proof editing stage of the article I changed every instance of ‘with ASD’ to ‘autistic’, or “on the autism spectrum” he explains. He returned the corrected proofs to the journal with an explanation for his changes, citing the Lorcan Kenny study.

“A few weeks later, one of the journal’s editorial staff contacted me, saying that it was their policy to use person-first language throughout their publications – but that the Editor wanted to learn more about my choice,” explained Yerys. The end result was that the article was published in JACAAP using identity-first language, and the editors included a note to readers at the end, stating

The article by Yerys et al. uses identity-first language (autistic children) or neutral terms (children on the autism spectrumor children who have an ASD diagnosis) rather than person-first language (children with ASD). In keeping with the AMA Manual of Style, 10th Edition, JAACAP has a standing policy of using person-first language, but the authors have requested and received an exemption to use identity-first language. The authorsrequest stems from a recent article by Kenny et al…. We encourage all stakeholders to read Kenny et al. and the current paper and invite readers to offer their opinions on this important issue by submitting letters to the editor.

“My co-authors and I were delighted that the editors at JAACAP wanted to engage in this dialogue with an open mind, and that they invited readers to share their feedback,” said Yerys.”

CAR wants to know what our community thinks. We encourage our readers to take advantage of two opportunities to weigh in on this discussion:
  • Take our survey and let us know your opinions on how we talk about ASD.

  • Send a letter to the editor (750 words or less) at the Journal of the American Academy of Child and Adolescent Psychiatry at support@aacap.org.

 

* There are a number of excellent articles detailing the history and opinions on each side of the debate, so we will link to those below rather than re-hash them here:

Huffington Post

Autistic Self-Advocacy Network

The Mighty

The Art of Autism

Northeastern University