Co-Written by Jennifer Jay Palumbo and Jillian Noyes
Being the parent of a child diagnosed with autism can be incredibly difficult, but not for the reasons you’d think. My son, who is currently a 9-year-old, was diagnosed at 18 months old. He received early intervention, which undoubtedly made a tremendous impact, but he remains speech delayed and can have difficulty with change or expressing himself.
I’ve been able to navigate that as best as possible, and Michael, my son, has flourished. From my perspective, while autism isn’t always easy and the road map strays from the typical one most parents follow, it isn’t “good” or “bad.” It’s just different, and that’s perfectly fine with me.
However, one of my biggest struggles is fully understanding how Michael would prefer to identify in terms of his autism diagnosis. Would he say, “I’m autistic?” Or “I have autism” or “I am on the autism spectrum”? What’s more is how would he like me to acknowledge this diagnosis?
Whenever I’m faced with such a question that I don’t have the answer to, I listen to the diverse voices of the autism community. As I am not autistic myself, I would never assume to know or understand it as intimately as the people who live with it every day. In listening to them over the years, I’ve learned that the ubiquitous autism puzzle piece is widely disliked. I’ve realized that ABA therapy is controversial. I’ve discovered the term “special needs” is not appreciated. Most relevant to my current dilemma, I’ve learned that strong opinions exist around identity language and autism.
In my quest to learn more about identity language, I met Jillian Noyes, a Connecticut-based filmmaker, writer, and autistic advocate. Her work often explores her life’s realities as an autistic woman and advocates for a more diverse way of engaging with the world. Ms. Noyes put together a piece on identity language, history, and the autistic community’s current stance on it. She explained that the conversation around identity language is a complex one with varying opinions and constantly evolving. In her own words, below is an overview of identity language history, the current controversy over Identity First Language vs. Person-First Language in the autistic community, and her insight into using identity language.
Understanding Identity Language
To understand the current state of identity language discourse in the autistic community, we must first understand the origins of identity language.
In the 18th century, Identity First Language emerged as a critical component of the medical model of disability, which defined people by their deficits and weaknesses rather than their personhood. Identity First Language assumes that the person’s diagnosis defines them. To use one example, Identity First Language would describe someone diagnosed with diabetes as “diabetic.”
“When used with regards to those diagnosed as being on the autistic spectrum, this approach tacitly encouraged the others to see the ASD community as autistic.” Ms. Noyes explained. “For many, the implication of this label means they are less than.”
Making matters worse, within decades, medical terms like ‘autistic,’ ‘disabled,’ and even ‘retarded’ devolved into harmful insults and slurs. Some feel that Identity First Language, and the medical model itself, had been reappropriated to silence and dismiss the community.
Outraged by centuries of being silenced due to public conceptions of neurodiversity, a movement was organized to change Identity First Language to Person-First Language. They saw Person-First Language as a way of directly countering the troublesome implications of identity. The idea is that when you “put the person first,” the speaker and listener must affirm that those with different needs are multifaceted individuals, with diagnosis defining only one facet of their being. Slowly but surely, Person First Language became more the norm, and it is used more frequently today.
But then, a new generation of activists, especially those with autism, began to interrogate specific issues with Person-First Language. Their challenge to the (new) status quo brings us a fundamental question – should we use Identity First Language or Person First Language when talking about autism? And would it be a different approach for caretakers and parents of neurodivergent children?
The Argument for Identity First Language
Ms. Noyes explained that at the core of the argument for identity-first language is that autism is a core component of one’s identity, shaping humanity. Unlike specific physical disabilities, autism and other neurological conditions are caused by brain chemistry variations and neurological wiring. Those distinctions in brain chemistry and structure impact everything in an autistic person’s life, so attempting to compartmentalize the person from the disability proves counterproductive.
Also, as critics of Person-First Language point out, extricating autism from a person implies autism itself is a disordered way of being and something to be ashamed of, ironically perpetuating the very same narratives that Person-First Language attempted to stop.
Critics of Person-First Language have also pointed to how putting the person first encourages people to talk around disabilities rather than normalize them. Euphemisms like “differently-abled,” “special needs,” and “on the autism spectrum” imply that the realities of a disabled life are shameful, strange, and taboo. “They deemphasize and downplay one’s own lived experiences so that the concept of disability itself is more palatable to non-disabled people and obscure one’s needs and individuality. Moreover, doing things differently isn’t always a disease, so why would we treat them as identical in a linguistic sense, with all the baggage that comes with it?
How You Should Approach Identity Language – An Autistic Perspective
Of course, we cannot discount neurodivergent individuals’ personal preferences, and it is here that the Identity First Language vs. Person-First Language controversy becomes apparent.
The autistic community is not a monolith but a kaleidoscopic tapestry of individuals. The same holds for the disabled community and the neurodivergent community. For that reason, you’ll see conflicting opinions within different communities. While many prefer “autistic person” over “person with autism,” certain corners of the larger neurodivergent population, including those with heavily stigmatized conditions like schizophrenia and bipolar disorder, prefer Person First over Identity First.
With that in mind, if identity language ever comes up in conversation, if at all possible, it’s advised that you ask what the person you’re talking to prefers and make an effort to stick to it. If someone corrects you for using the wrong identity language, thank them for letting you know and abide by their wishes. Lastly, when you’re not directly interacting with a neurodivergent individual, try and normalize Identity First Language when appropriate.
It takes time for language to catch up to ideas, and people tend to resist things that seem counterintuitive. Thus, it is our job as advocates to help bridge the gap between language and ideology. Rather than immediately attacking and canceling people for using person-first language, we must examine their intentions and ideas. There’s a solid chance that their heart is in the right place, but they aren’t fully aware of the discourse around identity language that’s currently happening in our community.
Likewise, we must be able to identify those whose use of identity-first language belies ableist beliefs. By not taking things at face value, we can reframe how we talk about disability and create a more equitable world for everyone – one where disabled and neurodivergent people are valued and uplifted just as they are.
A Parent’s Takeaway
Noyes’s words about identity language and intent struck a chord with me as a parent to an autistic child. Recently, on World Autism Day, a fellow parent I know posted about how she has two sons on the autistic spectrum. The intention was to post about how much she loves her sons and hopes that the world can embrace their differences more than admonish them. Almost immediately, she was ripped apart on social media for saying, “they have autism” rather than “they are autistic.” And while I support educating those like myself about identity language, I can’t help but wish people could see the intention behind the post in addition to the wording.
As I said initially, and I’ll repeat it – I will never know what it’s like to be autistic. Likewise, I wish others understood that they do not know what it’s like to be the parent of an autistic child. While awareness and understanding have grown, it’s still far from where it needs to be. We are often seen as “bad parents” if our child is having an understandable meltdown in public. We are told things like, “He doesn’t look autistic,” whatever that means. We try and advocate for our children as best as we know-how. Often, it feels like we’re doing so in total darkness and are met with much criticism both from parents of neurotypical children and from the autistic community itself.
I want to know my own son’s thoughts and feelings about identity language, but for now, he can’t tell me, and that’s hard. I am literally relying on the autism community to help me. While some advocates are helpful, it hurts when others immediately conclude that I don’t understand or care about my child just because I’ve used the wrong terminology.
As parents, professionals, and autistic people attempt to tackle this topic; I hope all sides can show up to the table and create a healthy dialogue where we see each other’s perspectives and have empathy. For us to change minds, promote acceptance, and educate others, we need to work together.