Every year near the beginning of April, you’ll probably see folks on your social media networks promoting autism awareness or seeing slogans such as, “Light it Up Blue!” No matter how much we talk about autism, whether it be through social media, face-to-face, or autism education, there still remains a stigma.
Stigma hurts. It hurts not only the person with autism but their families as well. See? You just read “person with autism” instead of “autistic person.” This is the difference between person-first and identity-first language. It might not seem like it matters, but it does. How you use language and refer to people with autism can directly affect their lives. Many people try to practice kindness, and words can have such an impact.
If you haven’t heard of the difference between person-first and identity-first language, it’s totally okay—knowledge is power. Read on to learn more about the differences between the types of speech, and why some prefer one over the other.
What Is Identity-first Language?
Everyone has an identity that they, well, identify with. Much of our personal identities have to do with our personal cultures—the way we were raised, our values, our beliefs—basically, things that are important to us. People express their identities in many different ways. However, people can also use language to describe what they believe to be a person’s identity. Some examples of this could be “Christian person,” “she’s transgender,” “athletic student,” “Muslim man,” and many others. Religion can be a large part of a person’s identity, as well as their sexual orientation, talents, and so many other attributes.
A person who is Christian, transgender, athletic, or Muslim would likely not be offended at the language used above, provided it’s correct and they do consider it part of their identity. However, let’s look at it from a different perspective.
First, think about a friend who’s been diagnosed with cancer. You wouldn’t call them “cancer person,” or even worse, “cancer.” Instead, you would naturally say “friend who was diagnosed with cancer.” There, you’ve used person-first language as opposed to identity-first language.
However, there’s been debate on this. Some people, including some in the autistic community, prefer identity-first language. We’ll discuss that further soon.
What Is Person-first Language?
Comparing cancer and autism as far as identity- and person-first language is okay, but the parallels end there. It’s important to remember that autism is not a disease but a developmental disorder, which is in part why person-first language is so important to so many individuals with autism and their families.
Person-first language is not new. Autism is but one of many conditions that fall under the umbrella of a disability. In 1974, an advocacy movement began to advocate to place people before their disabilities. Person-first language separates the person from their disability. In other words, their disability is still part of them, but it’s not their complete identity. Think again about the terms, “autistic person” or “person with autism.” The way each phrase defines the person is decidedly different. One phrase deeply roots autism as part of the person’s identity, while the other signifies that autism is but a part of that person.
The Debate Over Language Use
To the outside world looking in, person-first language may sound more kind and less stigmatizing. However, some autistic individuals, autism advocates, and experts do not agree. Why?
Many people with autism use the word “neurodivergent” to describe themselves (as opposed to their “neurotypical” peers). Neurodivergent doesn’t apply just to autism, although that’s usually the condition it’s most associated with. Sometimes, those with attention-deficit hyperactivity disorder (ADHD) and dyslexia self-identify as neurodivergent as well. It can also apply to certain mental disorders, particularly neurological ones.
There are a myriad of people in the neurodivergent community who do consider autism as part of their identity, in which case identify-first language is preferred. It’s important to remember that autism is definitely not a “one-size-fits-all” condition, and some individuals embrace their neurodivergence. When in doubt as you consider how to address someone, it’s always best to ask first. However, in the clinical sense, using person-first language is used more often to treat the person with autism with care and to help remove the stigma associated with the word.
There can be many debates in the autism community that can become quite heated, and this topic is one of them. Organizations, as well as individuals, have weighed in on the debate. In 1993, The National Federation of the Blind said that person-first language “portrays the blind as touchy and belligerent.”
The Deaf community, in general, also does not embrace the use of person-first language. In part, this is because different nuances in language have been taught to those who use American Sign Language (ASL). Clearly, you would say “Deaf person” as opposed to “individual with a hearing impairment”—the latter simply would be clunky and awkward in ASL. Also, just as with autism, some Deaf individuals do consider their deafness as part of their identity, so person-first language is not a good fit for them.
Just as with the Deaf community, many disabled people, in general, aren’t fond of the elongated “people-first” way of referring to a person with a disability. If you reread the last part of the last sentence, you’ll see person-first language: “person with a disability.” Some people favor “disabled person” simply because it’s less wordy and simpler to say to describe themselves.
The way we speak, and how we refer to people in general, can be a touchy subject in modern times. However, it’s a topic that still needs to be discussed. There is always more than one view when it comes to speech and language. As clinicians and as parents of children with autism, it’s important to respect how a person wishes to be identified. The scientific and medical communities generally favor person- over identity-first language, but that doesn’t mean that’s set in stone for every individual.
Educator Dr. Ron Malcolm describes it perfectly in Autism Parenting Magazine: “As a general rule, I try to use person-first language when referring to anyone with a disability. When I write a manuscript I tend to write ‘child with autism’ or ‘child with a learning disability’. When I deal with an individual person and need to refer to their condition, I tend to ask the person how they want to be addressed or I copy how they refer to themselves.”
Parents of children with autism generally favor person-first language as well. Referring to their son or daughter as “autistic kid” or “autistic child” may not feel natural to say. Instead, “child with autism” separates their child from their disability. When the word “autistic” is used as an adjective, it falls under the identity-first umbrella. While it’s up to children to eventually choose how they would like to be referred to, some parents of children with autism prefer person-first language. Parenting a child with special needs can be exceedingly difficult as it is, without adding the feeling of more stigma to it.
While not a formal scientific study, Autism Parenting Magazine ran a social media poll that asked parents what type of language they prefer when it comes to their child. Their Twitter poll revealed that 43.8 percent of parents preferred “child with autism,” 31.3 percent preferred “autistic child,” and 25 percent voted for “other,” which includes other terminology, such as “on the spectrum,” “neurodivergent,” etc. Their Facebook poll showed even more parents opting for “person-first.” One hundred and ten parents voted for “child with autism,” while 31 voted for “autistic child,” which is a much larger difference.
ABA Therapy and Person-first Language
ABA therapists may initially use person-first language, but will follow the client preference in their language choice. ABA is a therapy that can help a child with autism flourish, particularly if they’re experiencing behavioral problems. If you’re reading this article, chances are you’re already at least slightly familiar with ABA therapy. However, for review, below is some information about ABA.
In a nutshell, applied behavior analysis (ABA) therapy seeks to increase positive and helpful behaviors while decreasing problematic ones at the same time. ABA also focuses on many other aspects that may detrimentally affect a child with autism. ABA clinicians work closely with the child to help foster better communication at home, school, and out in the community, promote daily living skills and self-care, and assist in academics and learning. As a child gets older, an ABA treatment plan may shift the focus toward preparing for big transitions, such as employment or higher learning. ABA therapy is delivered by a supervisor and a registered behavior technician (RBT), who is directly supervised.
Each treatment plan is highly individualized and tailored to each child with autism. As autism is a spectrum disorder, no two children or people with autism present in the same way. Before ABA services begin, a supervisor will conduct an assessment to determine your child’s strengths and areas that need attention. The “applied” part of applied behavior analysis implies treatments must be highly individualized.
Generally, person-first language is becoming more of the norm, especially in clinical settings. For example, those working in the applied behavior analysis (ABA) field use person-first language during sessions and when writing treatment goals and plans. Educational settings also tend to use person-first language. It’s important to remember that the use of person-first language is meant to be helpful and remove stigmas associated with the word “autism.” Using person-first speech separates the person from their disability, instead of having their disability define them.
However, not everyone in the autistic community and disabled community favor person-first language and some prefer identity-first usage. For some, being “autistic” or neurodivergent has become a large part of their identity, and they wish to be referred to as such. For others, person-first language is too wordy, and identity-first language is more succinct and to the point. Some studies have shown that adults with autism overwhelmingly prefer identity-first language when referring to their autism. We should always follow the preference of the individual making the choice as to which language is used.
Kenny and colleagues conducted much of the research on person- vs. identity-first language in 2016. Those in the autistic community seem to be somewhat split on terms: while 38% of those polled said the term “autistic” was the most preferred term, 28% said the word “autistic” was the least preferred. Some scholars and professionals who work in the field also agree with some of those in the autistic community: that the symptoms of autism and autism itself cannot be separated from a person’s identity because of how intrinsic they are, and thus, autism is a part of their identity. These professionals are very resistant to person-first language. However, why would a person with autism be resistant to person-first? Some in the autism community believe that identity-first language celebrates neurodiversity more, and, like the Deaf community, some in the autistic population do consider autism a part of their identity.
When addressing someone directly, it’s best to simply ask what type of language they prefer.