Identity-First Language: Is it ‘Person with Autism’ or ‘Autistic Person?’

Jan 12, 2024

You may have heard autistic people referred to both as “autistic people” and “people with autism.” What is the difference between those two terms and which one should you use?

Person-First and Identity-First Language

The way in which a group of people that share a common characteristic identifies themselves is an important part of how that group and its members are viewed by those outside of it. Often, those inside of the group may refer to themselves using one term (an endonym), while those outside of the group use another (an exonym). For example, English speakers call Germany “Germany” (an exonym), while German speakers call Germany “Deutschland” (an endonym). Similarly, there has developed endonyms and exonyms of sorts, in the autism community about whether to use person-first language (“individual with autism”) or identity-first language (“autistic person”). Person-first language is widely used by the medical and scientific communities, while identity-first language is often advocated for by the autism community. Below, we will discuss each option, describe when they are used, and what the different justifications for them are.

Person-first language arose out of movements in the 1970s and 1980s related to advocacy groups wanting individuals to be viewed as people first followed by the group to which they belonged. Its popularity grew, and by 1990 important pieces of legislation were written using person-first language (specifically, The Americans with Disabilities Act and the Individuals with Disabilities Education Act). The original intention of person-first language was to avoid the implication that an individual was defined or limited by their characteristic (i.e. autism). However, recently many groups have called for a stop to the use of person-first language because they feel it makes their characteristic sound like a disease, illness, or disorder they possess, rather than simply a part of their identity. Some groups, such as those in the Deaf community, have a unique culture with its own history and traditions and do not view their deafness as a disability, but rather as another variation of normal life; therefore, they choose not to embrace person-first language and encourage the use of identity-first language. Some members of the autism community feel similarly when advocating for identity-first language.

A 2020 survey by the Organization for Autism Research (OAR) asked 1,000 autistic individuals, parents, siblings/relatives, autism professionals and educators to offer their thoughts on identity-first language versus person-first language. 81.4% of respondents said they preferred the use of identity-first language and 88.1% of respondents said they refer to themselves or a loved one as an “autistic person”. One respondent elaborated by saying, “My autism is not an accessory that I can set aside. It is not something external that has latched onto me. It is not an illness or disease I have ‘caught.’ It is a fundamental, inseparable part of me and who I am.”

Some autistic persons also say they prefer individuals outside of the community to use identity-first language as well. A respondent to the OAR’s survey stated, “When a publication uses the word ‘autistic’…I feel seen and accepted.” Others say that person-first language is acceptable. It is important to note that due to the differing opinions in the autistic community, person-first language is still commonly used in the scientific and medical communities for the reasons mentioned above and that many publications, including articles on this website, may still utilize it.

Autism advocacy tells of the general movement of a preference towards identity-first language within the autism community; however, it is still important to ask and listen to your individual autistic loved ones, colleagues and friends about their personal thoughts and how they would like to be identified, whether it be as an individual with autism, an autistic person or in another way all together. The important part is that they make that choice for themselves.

Article by: JT Exum and The Autism ToolKit