When speaking about your child’s autism diagnosis, do you say “my autistic child” (identity-first) or do you speak about your “child with autism” (person-first)? This is more than a mere language debate, it speaks to the heart of self-identification and, unfortunately, stigma too…
As a journalist specializing in autism, choosing the right language is important to me and I’m constantly reevaluating which terms to use. A case in point is when I recently had the opportunity to interview Dr. Emily Lovegrove for the Autism Parenting Summit (April 2021). Known professionally as the “Bullying Doctor”, she is also autistic, which means she has a valuable insider’s perspective.
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A bit of nervousness is to be expected when you’re about to interview a doctor, who is also a successful author and speaker, and one of my concerns was ensuring I used her preferred terminology in my questioning.
I’ve done enough research to know most adults on the spectrum prefer identity-first language. In fact, it probably goes beyond preference—from certain online forums it seems person-first language is sometimes viewed as offensive, belittling, and ignorant.
On the other hand, in academic and publishing sectors, person-first language is mostly an absolute requirement. Students and academics submitting research may get penalized (or not published at all!) for using “incorrect” language, and many publishers adhere to strict person-first guidelines.
As an autistic woman and a respected academic, Dr. Lovegrove would therefore be familiar with both sides of the debate. So, when our video call started, I asked about her preference after we introduced ourselves. I couldn’t have asked for a more gracious interviewee. She chuckled, and told me, “It’s always a dicey thing,” and wished me: “Good luck!”
She used identity-first language (“I am autistic”) and was of the opinion that most autistic adults do the same. However, she also shared she often hears person-first language from parents with children on the spectrum—this is in line with research (Collier, 2012) which suggests parents generally prefer and use person-first language (“with autism”).
Perhaps this is the point of the debate… we should ask individuals on the spectrum what they want. When it comes to children, parents are often in the best position to find out about their language preferences—when they reach the necessary understanding concerning person- and identity-first language. In this regard, parents can help children (who are interested and able to understand the debate) see the reasoning behind both language choices.
Because, believe it or not, the reasoning behind person-first language was not to offend anyone, it was actually intended to show respect and build self-esteem. So how did the use of person-first language become so contentious?
The good intentions behind people-first (or person-first) terminology merit investigation, and so does the reasoning behind a shift in preference to identity-first language by many in the autism, blind and Deaf communities.
Reading online forums where autistic adults share their views, it becomes clear that this is not really a debate. Whatever the medical community, and policy-makers, deem as “correct language” remains irrelevant as far as many people on the spectrum are concerned. To them, their experience, their voice, and their opinion is what should matter when appropriate language is decided upon.
When reading an eloquent response on such a forum (explaining why person-first language is so offensive), one can’t help wonder how it gained popularity, and why the language is still pervasive in research and medical circles, despite all protestation?
History of person-first language
The roots of person-first language can be traced back to 1974 when the first self-advocacy conference was held in the United States. At this conference, a movement began for people to be placed before their disabilities (literally putting the person first, eg. person with autism or person with a disability). The intent behind person-first language was noble; it originated as advocacy groups decided to take a stance against practices of dehumanising disability.
By putting the person first, the movement essentially declared that a person is more than a certain characteristic or disability. With the best intentions, almost every disability received a person-first language makeover. The disabled themselves did not escape criticism when referring to themselves with identity-first language. Disabled? No, they were supposed to follow the cue of sensitivity training and call themselves a “person with a disability”.
In the same vein you were not supposed to call yourself blind, deaf, diabetic or autistic. Even if you were okay with being just that… the separation between the person and the disability or condition became key to showing respect. Not at the behest of the affected community, but because academics, advocates, and professionals said so.
Academic journals and government papers adopted person-first language and it became the only acceptable way to refer to many disabilities, neurodevelopmental, and cognitive conditions. It didn’t take long for people to notice that the use of person-first language sometimes felt a little awkward, stiff, and perhaps even defensive.
Slowly reservation about person-first language seeped through the veil of sensitivity; were these disabilities really something that needed to be separated from the person, and was it even possible when many individuals found much of their identity in their condition or disability?
“Totally unacceptable and pernicious…”
These strong sentiments were expressed when The National Federation of the Blind adopted a resolution in 1993, rejecting person-first language. In its argument against person-first language the organization expressed its dismay at the notion that “person” should always precede the word blind. In the Federation’s opinion, such language sounds defensive and “portrays the blind as touchy and belligerent” (Jernigan, 2009).
The Federation, in its resolution (93-01), did not condemn the occasional use of people-first language but rather its forced use to appear politically correct… or in their words: “and still others (such as ‘people who are blind’ or ‘persons who are blind’) being harmless and not objectionable when used in occasional and ordinary speech but being totally unacceptable and pernicious when used as a form of political correctness to imply that the word ‘person’ must invariably precede the word ‘blind’ to emphasize the fact that a blind person is first and foremost a person.”
The Deaf community also favors identity-first language rather than people-first (Crocker & Smith, 2019). Deaf-culture feels strongly about the use of deaf-first (identity-first) language as it aligns with their positive cultural identity.
Deaf individuals often use the following example to illustrate their preference for identity-first language. Referring to themselves as Deaf (or as a Deaf person) may earn the individual a gentle admonishment to use terminology like “person with a hearing impairment”. This makes no sense to a person who has never heard, who grew up with a completely different way of communicating—that clearly does not include hearing in the typical sense.
This speaks to one of the reasons many disabled people don’t like person-first language—sometimes it is nonsensical in its avoidance to name a disability. Stiff language that goes against grammatical rules is used to rename a disability as though calling it by its name somehow implies shame. Of course this seems completely unnecessary when those in the community are comfortable with their identity and proud to be part of such culture.
The case for person-first language
As I read more arguments against person-first language I worry about my own use of such language and the offense I may (unwittingly) have caused. Comparisons and questions like: “Would you call yourself a person with femininity (female), or a person with introversion (introvert)” really hit home, but person-first language can’t be all bad, can it?
It seems like there are places where person-first language is indeed accepted and even prioritized. Scientific journals and most governmental scribes adhere to person-first language and they justify it with the mantra: regardless of disability, everyone is a person first.
I recently collaborated with respected educator Dr. Ron Malcolm for some of my content. Dr. Malcolm is an example of an academic who uses person-first language in his work. He told me: “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.”
Certain studies such as Gernsbacher (2017) suggest, however, that person-first language is used more often to refer to children with disabilities than to refer to children without disabilities. The author also suggests that person-first language is used more frequently when referring to disabled children (rather than disabled adults) and, most worryingly, person-first language is often used when referring to the most stigmatized disabilities. Person-first language may therefore add to or accentuate stigma and completely defy the purpose of its invention.
Many people have questioned the premise of people-first. It is strange that we should need a reminder to see someone as a person first and foremost. More to the point, even if we do see the person first, is autism not part of what makes the individual the person they are?
According to Cathy Wassell, who heads up the Autistic Girls Network and is also an autism parent, the medical community is far behind on autistic (and other disabled culture).
Cathy told me: “The whole medical model of autism diagnosis needs changing really—as long as there is a language of deficit it’s going to be more difficult to promote a positive outlook. And the first people that parents get to talk to about autism are medical people. Multiple studies have shown that the autistic community prefers identity-first language. I know other disabled communities (for example I believe the Down’s syndrome community) prefer person-first. The issue is that autism is not a disease, it is a neurological difference that affects the way someone thinks and views the world. It can’t be set down next to you like a handbag. It would be like saying ‘person with gayness’ or even ‘person with femininity’.”
Parental preference
Adding to the controversy is the fact that many parents of autistic children do prefer person-first language. In the autism community, people have shared different reasons for this. Some feel that, while parents are still coming to terms with their child’s autism diagnosis (as they get educated and familiar with the condition), it may feel more natural to refer to their “child with autism”.
In the early days of a diagnosis, autism may seem separate from the child. As the child grows up and the diagnosis is accepted it becomes part of his/her identity, pride in the community grows and identity-first language may take preference.
Parents may also prefer person-first language because they feel they really do see the child first. A parent may not identify with the autism community, especially when their child is first diagnosed, and to the parent their child is just their child but “with autism”. They may hear person-first language from their child’s doctors and, as they educate themselves using scientific journals, person-first language will become part of their vocabulary.
This is not static and, as parents support their autistic child and advocate for him/her, they may start to endorse identity-first language. Sadly parents are attacked for using person-first language when they are, in most cases, their child’s support warriors. Informing parents of reasoning behind community preferred language is helpful, attacking them for beliefs (which they may subscribe to for noble reasons) is harmful.
Evidence of parental preference
At Autism Parenting Magazine, we decided to test the above theory concerning parental preference with a Facebook poll. We asked parents what language they use to refer to their child on the spectrum. The results were as follows:
- Child with autism: 110 votes
- Autistic child: 31 votes
- Other: 27 votes (voters specified and shared they refer to their child as “on the spectrum”, “neurodiverse”, or “child with ASD”)
We also took the poll to Twitter where we found 43.8% of respondents prefered “child with autism”, 31.3% “autisitc child”, and 25% opted for “Other”.
Our results confirm person-first is clearly the preference for the majority of parents with children on the spectrum.
Except for parents preferring person-first language, there are also specific instances where person-first language is the only acceptable language to use. For instance when using a term in connection with its medical definition, person-first should be used. An example is that we refer to a “child with cerebral palsy” not a “cerebral palsy child”.
Does Autism Parenting Magazine use person-first language?
You might therefore think we use person-first language in Autism Parenting Magazine? Actually, we’ve chosen to stick with the language used by each individual author. Many of our contributors are on the spectrum or parents, and we encourage everyone to use their preferred language as long as it is respectful. However, we base many of our articles on research from scientific journals—references and quotes from such studies necessitate inclusion of person-first language.
We also publish guidance from medical professionals who often prefer person-first language due to their professional training. It is a balancing act, with factors like readability and industry guideline adherence also playing smaller parts.
Conclusion: movement towards identity-first language
As I trawled through the research and gathered comments from people in the autism community to write this article, it became ever clearer to me that person or people-first language may be useful for certain circumstances, but the movement to identity-first language is undeniably endorsed and supported by the majority of adults on the spectrum.
The pride in their communities is a driving force behind embracing identity-first language for many autistic adults. For them, there is no need for language that tries too hard to acknowledge the person, they see autism as an integral part of the person they are.
Some go as far as to mock person-first language, the “with” in “person with autism” is the primary target for sarcastic remarks. Comments like: “as I am a person with autism, I’ll take my autism for a jog and then give it a good scrub,” underline that these individuals see person-first language as belittling their identity.
These sentiments are often expressed by high-functioning adults on the spectrum (the term high-functioning is a topic for a whole other article!). Others might find such references distasteful and disrespectful—which should lead us to question the preferences of individuals on the spectrum who need a lot of support and those who are nonverbal.
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Nonverbal, of course does not mean not communicating. What are the preferences of those who may not be able to let us know in a traditional way about their preferred terminology? Do these individuals get a say in whether terminology like “nonverbal”, “low-functioning” or “in need of high support” is acceptable; and are these individuals more comfortable with person-or identity-first language?
Maybe if the autism community had been involved and asked some of the above questions, people-first language would have succeeded in putting people and their needs first. With answers and opinions from the autism community themselves, preferred language would be constructed by those who are actually affected by such language. Noble intentions may be behind person-first language, but does it actually put the person or what they want first?
References:
Collier R. (2012). Person-first language: Noble intent but to what effect?. CMAJ : Canadian Medical Association journal = journal de l’Association medicale canadienne, 184(18), 1977–1978. https://doi.org/10.1503/cmaj.109-4319
Crocker, A. F., & Smith, S. N. (2019). Person-first language: are we practicing what we preach?. Journal of multidisciplinary healthcare, 12, 125–129. https://doi.org/10.2147/JMDH.S140067
Gernsbacher, Morton. (2017). The use of person-first language in scholarly writing may accentuate stigma. Journal of Child Psychology and Psychiatry. 58. 859-861. 10.1111/jcpp.12706.
Jernigan, K. (2009). The Pitfalls of Political Correctness: Euphemisms Excoriated. Braille Monitor. https://nfb.org//images/nfb/publications/bm/bm09/bm0903/bm090308.htm.
Lovegrove, E. (2021). Bullying Prevention: Information, Helpful Tools and Intervention Strategies. Autism Parenting Summit.
