I am autistic, and I am entering a full time special education master’s program in the fall. I remember sitting in my first special education class during my sophomore year of college. I was taking a class called, “Intro to Special Education and Inclusive Practices.” We as a class discussed the “proper” ways to address students from each disability community. The issue was that the information in our textbook about language preferences was not from any disability communities themselves, but from neurotypical, nondisabled academics and professionals. According to them, it is the most “respectful” to use person first language to address all “people with disabilities.” When I objected to using “people with autism” due to the majority of autistic people preferring identity first language, I was met with harsh criticism from my neurotypical peers in the classroom, even though I am part of the autistic community, and they were not. Why is there such a resistance to listening to and respecting the actual language preference of the autistic community? And why do autistic people prefer “autistic” over “people with autism?”
The person first language movement started in 1983 from HIV and AIDS activists who created the Denver Principles at the 2nd National AIDs Forum as part of an effort to reduce stigma of people diagnosed with HIV and AIDS. The Denver Principles state that, “We condemn attempts to label us as “victims,” a term which implies defeat, and we are only occasionally “patients,” a term which implies passivity, helplessness, and dependence upon the care of others. We are “People With AIDS.” People diagnosed with HIV and AIDS did not want to be defined by their condition and did not want to be referred to as, “HIV/AIDS patients” or, “HIV/AIDS positive people,” and did not want to be labeled as victims or reduced to their diagnosis. Understandably, people diagnosed with HIV, AIDS, or other diseases and illnesses such as cancer do not want to be defined by their sickness, and want to be acknowledged as people first.
The problem emerged when the person first language movement extended to disability communities, who generally do not view their disabilities as something that should be treated or cured as a disease such as HIV or AIDS. Most disability communities adhere to the social model of disability rather than the medical model of disability. While the medical model of disability views disabilities similar to diseases and illnesses that need to be fixed, treated or cured, the idea behind the social model of disability is that disabled people are more disabled by societal and cultural barriers such as ableism and lack of accommodations than they are by their actual disability.
In 1993, the US Department of Education’s Office for Civil Rights published a memorandum promoting person-first language and instructed its members to avoid identity first language, such as using “people with a visual/hearing impairment” instead of “blind” and “deaf,” as well as saying, “people with dyslexia,” instead of, “dyslexic,” and, you guessed it, “people with autism,” instead of, “autistic.”
This insistence of removing identity first language greatly insulted both the blind and deaf communities. In response to the memorandum, in 1993, the National Federation of the Blind adopted a resolution condemning people-first language, and called the word “person” preceding the word “blind” to emphasize the fact that a blind person is first and foremost a person was, “totally unacceptable and pernicious,” and, “overly defensive, implies shame instead of true equality, and portrays the blind as touchy and belligerent.” The deaf community similarly takes pride in its culture and rejects person first language.
The autistic community also rejects person first language for similar reasons the deaf and blind communities do. They attempt to separate people from disabilities, as if disabilities were inherently negative, bad, or undesirable. Person first language attempts to separate neurodiverse people from their neurotype and follows the medical model of disability rather than the social model of disability. People who look at autism through the medical model lens view autism as a medical issue that should be treated or cured, and view autistic behaviors as “symptoms” that should be reduced or eliminated. But people who look at autism through the social model of disability lens see it as a neurological difference that should be accommodated and socially accepted and that autistic behaviors should be better understood instead of extinguished. The neurodiversity movement is shifting the public conversation about autism from the medical model of disability to the social model, or from viewing autism as something that should be separated from people to viewing autism as something that should be embraced, understood, and accepted. Being autistic, similar to being deaf or blind, is intrinsic to one’s identity and culture, and cannot and should not be separated from people. We don’t carry our autism around with us like a handbag and we are not “people with autism.” We don’t “live with autism,” or “suffer from autism.” We are autistic.
The mindset that we should “see the able, and not the label,” or, “see the person, not the disability,” is a cultural and societal issue and is rooted in ableism. People view the very term, “autistic” as offensive. It also doesn’t help that “autistic” is often used as a slur similar to the r-word by ableist memes online with “edgy” humor, so as such, the word, “autistic” is viewed as a bad word. When the hashtag, #autistic is searched on Instagram, it is full of “dark humor” with ableist memes and offensive pictures. The “autistic screeching” memes that were popular in 2016 and 2017 were incredibly ableist and offensive to autistic people. People associate the word, “autistic” with other ableist slurs such as the r-word, with being “dumb” or “stupid” or incompetent, and as such, think that autism is something negative that should be separated from people.
Despite the autistic community’s multiple attempts at educating neurotypical people about our language preference, they are unfortunately often ignored or spoken over. A example of this is how Autism Speaks continues to use person first language, even after conducting a poll in which “I am autistic” was the preferred terminology over “I have autism,” when autistic people responded. Autism Speaks conducted a poll on their social media pages on July 22nd, 2019 with the text, “Do you prefer person-first language or identity-first language? Choose which you prefer then reply to tell us why as well as your connection to autism. Thanks!” Notice how Autism Speaks said, “Your connection to autism,” and opened the poll up to everybody with a “connection to autism” instead of restricting it to the only people this actually affects, autistic people. Language preference of autistic people is NOT something that anyone who is not autistic should have any input or say in, including parents and caregivers of autistic children, teachers, professionals, doctors, therapists, academics, or neurotypical autism researchers. Like with other minority groups, I do not have the right to say how someone from that group identifies, and I will not speak over a group that I’m not part of. As a marginalized group, the only people who get any say on how they self identify are autistic people themselves.
Because Autism Speaks did not restrict the poll to only autistic people and opened it to their many neuroytpical followers, who generally are more likely to prescribe to the medical model of disability and use person first language, at first the results were clearly in favor of person first language when parents, teachers, and professionals voted. However, the autistic community got word of the poll, and shared it to neurodiversity and autism related pages and groups on Facebook, and retweeted the poll on Twitter so that autistic people could have input in the poll. After autistic people voted, the results were clear: autistic people by and large preferred identity first language in both polls. On Facebook, the result was 69% for identity first language, or “I am autistic,” and 31% for person first language, or “I have autism.” On Twitter, the result was 82% for identity first language, or, “I am autistic,” and 18% for person first language, or “I have autism.”
So, why did Autism Speaks make this poll to begin with? While no clear reason for this was given by Autism Speaks, I suspect they did so in their attempt to justify using person first language. They knew that their neurotypical followers of caregivers, teachers, and professionals largely outnumbered their autistic followers, and as such, the poll would likely receive more responses from non-autistic people than from autistic people and skew in the favor of the person first language preference by Autism Speaks. They knew that their neurotypical followers would be more likely to prescribe to the medical model of disability and vote for person first language, and they would use this information to falsely claim that autistic people preferred person first language. They did not anticipate the autistic community to respond the way it has, in such a large volume that it flipped the vote, and their expectations. Autism Speaks attempted to silence autistic people with their poll, and they failed.
How has Autism Speaks responded to the poll? By changing the wording of their posts from “who has autism” to, “who is autistic?” By following up with the poll and thanking everyone for voting, and that they will do better to respect the language preference of autistic people? Nope. They continue to use person first language, and never spoke of the poll. While they have not yet deleted the poll, they pretend it never happened. They continue to show blatant disrespect for the autistic community, and they never intended to listen to autistic people in the first place.
There are some autistic people who do prefer person first language, and if another autistic person tells me they do, I will respect their preference. However, most autistic people do prefer identity first language, as indicative on other surveys in addition to the Autism Speaks poll, such as Christa Holmans, aka Neurodivergent Rebel’s poll (who does have a mostly autistic following, unlike Autism Speaks), in which 61% of respondents preferred, identity first language or “autistic,”18% of respondents preferred “on the spectrum,” and 13% of respondents preferred person first language, or, “people with autism,” and 8% of respondents said, “other.”
It is time that media outlets, teachers, caregivers and others stop being afraid of saying the words, “autistic” and “disabled,” they are not bad words, and they shape who we are. Please stop correcting us when we say we are autistic. Neurotypical people who are not part of disability communities do not get to say how these communities get to identify, and these include the academic scholars in my special education resource book. The real experts on autism are autistic people, and autistic people have overwhelmingly spoken in favor for identity first language. It is about time that society respects our preference and stops insisting to, “put the person first!” Never be afraid to put identity first.