First-Person Language and How it Shapes the Society’s View: Autistic Person or Person with Autism

While language is important, it is vital to not let language mask the importance of the content surrounding this topic.

It is easy for parents, caregivers, or people living around you to be confused about the language and terms used to describe your child upon professionally diagnosed with Autism Spectrum Disorder (ASD). Between “autistic child” versus “child with autism”, is there any difference when using either of the terms? What other larger effects can it bring from a societal point of view? Read on to find out more!

Autistic Child vs. Child with Autism

The key difference between the two terms is the perspective that it brings to the condition. “Autistic child” suggests an identity-first perspective, where ASD is an inherent part of their identity and it is something to be proud of. On the other hand, “child with autism” suggests a person-first perspective, where the child is first seen as a person, rather than being defined by their diagnosis and being labeled.

Generally, professionals are trained to use person-first language when referring to their clients. This is not exclusive to conditions like ASD but rather, a universal ‘rule’ that was introduced during their education. In turn, caregivers are likely to adopt the language that professionals used. However, it was found that autistic people themselves actually prefer to be referred to as “autistic people” instead of “people with autism”.

In 2018, Chris Bonnello, founder of the website Autistic Not Weird, conducted a survey regarding this particular debate on which term to use when referring to the autistic population. There were 11,000 participants and both autistic and neurotypical people were included. Results from autistic respondents and neurotypical respondents differed significantly. For the autistic respondents, over 50% prefer to be referred to as an “autistic person”, about 11% prefer to be referred to as a “person with autism”, and 25% had no preference. As for the neurotypical respondents, approximately 50% use the term “person with autism”. It was noted that they do not have an autistic relative. From the results, it is clear that there is a discrepancy in how to refer to the autistic population between themselves and others.

History

In the past (till 1980s), official medical records referred to people with intellectual disabilities as “morons”, “retards” or “demented” (ASD was considered a mental disability in the past). The debate started because these people and the organisations that represented them fought for a change. At that point, when you are referred to by these terms, it is logical to want to be seen as a person first, then the disability. Hence, the term “person with autism” was born.

This persisted until the mid-1990s when a preference for identity-first language was born. This was sparked from the US federal change in terminology from Education for All Handicapped Children Act was renamed as Individuals with Disabilities Act. A federal change like this was key as it reflected a wider consideration for the language used in identification.

How Language Shapes Society’s View

Language is important as it shapes how we think about the subject and understand our world and the people in it. Words such as “abnormal”, “illness”, “disability” undermines the fact that people on the spectrum are different, and suggests that they are ‘less’. When particular words used to describe this population are used long enough, it can change the perception towards them greatly. Perception is key in stereotypes which leads to discrimination when prejudices are involved. When this happens, it is highly possible that they might be greatly misjudged, making the society a highly non-inclusive one, and one that does not celebrate differences. This would create a stagnant and backward-thinking society.

However, while language is important, it is vital to not let language mask the importance of the content surrounding this topic. Getting too caught up in the language would greatly discount the works put in by various initiatives. Instead, we can always come up with a middle ground, that is, to replace the person-first or identity-first terms with something more neutral like “on the spectrum” or “on the autism spectrum”. Alternatively, asking each autistic individual for their preference is also an option.

Written by: Tiffany

References:

ABC Everyday. (2019, November 25). 'autistic' or 'has autism'? why words matter and how to get it right. ABC Everyday. Retrieved January 16, 2022, from https://www.abc.net.au/everyday/autistic-or-has-autism-why-words-matter-and-how-to-get-it-right/10903768

Callahan, M., & Callahan, M. (2020, April 23). Unpacking the debate over person-first vs. identity-first language in the autism community. News @ Northeastern. Retrieved January 16, 2022, from https://news.northeastern.edu/2018/07/12/unpacking-the-debate-over-person-first-vs-identity-first-language-in-the-autism-community/