By Emily Paige Ballou

Photo credit: Nathan Legakis

My guess is that if you have a child or family member on the autism spectrum or have been involved with the special education system or disability services as a professional, you have most likely been taught, at some point, that the correct way of referring to people with disabilities is to use “person-first language,” or to “put the person first.”

Meanwhile, over the past couple of decades, much of the autistic community, as well as other disability pride-focused communities, have actually come to prefer “identity-first” language. We call ourselves disabled, or autistic, or Deaf, rather than “people with disabilities” or “people with autism,” for instance, because we don’t believe that our disabilities or communication differences are something that should have to be separated from our personhood, instead of treated as an intrinsic but morally-neutral aspect of our identities. We say “women,” not “people with femaleness,” and would call an adherent of a particular faith system a “Buddhist” or “Christian,” not a “person with Buddhism” or a “person with Methodism.”

Similarly, autism isn’t something we feel we should be ashamed of or be required to hold at arm’s length in order to be seen as people, just as we don’t feel people should have to rhetorically distance themselves from their gender, sexual orientation, race or ethnic identity, hair color, or faith in order to be seen as whole people deserving of respect and autonomy.

But my aim here is not to argue for or against either identity-first or person-first language. I feel that many other autistic and disabled advocates have amply addressed that particular topic, and there is very little new ground that I could tread there.

Rather, I’d like to challenge a phenomenon that tends to occur in nearly any online conversation between autistic people and mostly non-autistic parents about that language debate. I don’t, in fact, think I’ve been involved in a single one, in over ten years of involvement in autistic advocacy now, in which someone didn’t make this contribution to the conversation:

“I asked my child what he wanted to be called, and he said ‘my name.’”

Now, I think I know what the intent of this anecdote is. I think you want to tell this story to honor your child’s full and unique humanity and relationship to you.

Unfortunately, the effect, probably inadvertent, can be to disparage the importance of disability communities having terminology preferences, of being able to know that we share a common language and identity with other autistic people (or people with other disabilities), as well as to further entrench harmful stereotypes of autistic people as being lost “in our own little worlds” or irreparably disconnected from other people.

But here’s the truth: Autistic people are connected to each other. We’re connected by shared experiences of the world—similar sensory experiences, similar challenges growing up, shared experiences of mistreatment, ostracism, and loneliness, of feeling like we are always speaking a foreign language even in our own native tongues. We’re connected by time spent doing activism together, advocating for both ourselves and each other, and of course, simply by being friends and enjoying each other’s company.

Many autistic people are partnered or married to each other. Some of us are autistic parents to autistic children. Some of us belong to intergenerational families of autistic people.

And like almost any other group of people who have been marginalized for some facet of shared identity, we have a diverse set of opinions about the terminology we use to talk about ourselves that has shifted and evolved over time for various reasons.

As Lydia X. Z. Brown wrote in their essay “Dear Well-Meaning Strangers,” “Autistic is not a swear word. It is a beautiful word, a name for an identity that represents an entire group of people who are diverse in their personalities, characters, abilities, and deficits. Autism is not homogeneous. Autistics are not homogeneous. But we are everywhere.”

If my friend Jane is going to be in my city and wants me to come out to get coffee or dinner with her, then she will just use my name to e-mail me and say “Hey, want to hang out this week?” But if we are going to have an in-depth conversation over coffee about the kinds of issues and challenges we share because of our neurology, or that we share with a whole community of similarly disabled people, then the word “autistic” is going to be very helpful to our ability to do that.

When we ask you to understand the reasons autistic people choose the identifying language we do, no one is asking you not to call your child by their name in any context in which that would be the normal and obvious thing to do. That is not what this is about.

It’s about the right of autistic people to have access to the language with which to talk about our experiences, to share an identity as a community, and to have words with which to advocate effectively for our needs.

Whether your child comes to identify as autistic, as a person with autism, or wishes to keep that information private or not identify with the autistic community at all, is up to them.

But your child deserves access to information about what our communities believe and why, disabled adults in their lives, and exposure to open and nonjudgmental discussion about autism and disability, in order to make these decisions for themselves.

Our anthology, Sincerely, Your Autistic Child, includes contributions from authors who identify as both autistic and as people with autism. Some of us feel very passionately in favor of one or the other, and others less strongly, or identify more closely with the broader community of people with intellectual and developmental disabilities.

But all of those preferences are informed by our personal histories, our sense of ourselves in the world, the communities of disabled people we’ve been a part of and the work of autistic and disabled elders and activists we’ve looked up to.

There’s nothing shameful about being autistic. Nothing about knowing and understanding our linguistic history detracts from your child’s individuality or personhood. And there’s nothing trivial or strange about having discussions about autistic identity.

About the Author 

Emily Paige Ballou is an old Millennial from the Midwest who currently lives and works in NYC, where she primarily stage manages off-Broadway new plays and new musicals, including works such as the Hello Girls with Prospect Theater Company, Nikola Tesla Drops the Beat at the Adirondack Theatre Festival, and Rose with Nora’s Playhouse. She graduated from the University of Georgia, where she was also a member of the Demosthenian Literary Society. Previous publications include pieces in the Thinking Person’s Guide to Autism, The Real Experts: Readings for Parents of Autistic Children, NeuroQueer, Barking Sycamores, and Fuckit: A Zine.