So I just stopped writing after the pandemic started. At least, I stopped writing here. Instead, I took my thinking to journals (and I wrote a gross amount of video game dialogue for a separate project), to escape.
It’s been a year, and I think I’m ready to return to online journaling. I like intersectional spaces, or places where ideas come into contact with one another, so I wanted to restart there. Since:
- I’m autistic;
- I’m a writer; and
- I teach composition at a community college;
I think it’s safe to say I’m the sort of person who’d frequently think about language use and autism.
Mainly, I’m interested in how language doesn’t provide many instances of one-size-fits-all word choices.
For this post, I’d like to explore three examples:
- “autistic person” vs. “person with autism”
- “autism awareness” vs. “autism acceptance”
- “autism mom” vs. “mom of autistic child”
While I understand some bloggers interweave research into their writing, (and that definitely helps their credibility,) that’s not what I’m doing here. I’m speaking from an autobiographical stance, reflecting on my personal experiences, as I wade through my curiosities with language, so that I might build on those ideas later.
“I am an autistic person” vs. “I am a person with autism.”
This is the main language use I see debated within autistic communities.
On the one hand, we have person-first language, which is encouraged when we’re exploring dehumanization. By placing the person first, the language use stresses humanity over label.
This is why we see “person of color” or “BIPOC” in conversations about current social issues, such as systemic racism.
The word “issue” is meant as a replacement for “problem.” This is because “issue” highlights the complexity of a conversation; whereas, when we talk about “problems,” we imply that there’s a clear path to resolution.
We solve math problems.
We discuss social issues.
But as time goes by, I wonder if “issue” is losing oomph.
By itself, “issue” lacks the emphasis that a conversation often requires; it’s quiet.
“Systemic” is powerful because it utilizes the complexity of “issue,” while pointing towards how deeply the roots go, i.e., into government-funded institutions like schools and law. “Systemic issue” wakes “issue” up.
RETURN TO: “autistic person vs. person with autism”
Systemically speaking, autistic people face erasure. Researching autism means reading through sludge about “symptoms,” “cures,” and “treatments,” which imply that autism needs correction.
Furthermore, most institutionalized research (read: funding) focuses on white male autistic children.
In other words, autistic people are often told (mostly through implication) that autistic people shouldn’t exist. They’re also told that autism is a white male experience, and that it mostly affects children, doubling down on the feeling of erasure for other genders and races.
This is why person-first language isn’t useful for advancing autism acceptance. By saying “autistic person,” the language use acknowledges that autism is part of the person; autism is there to stay; autism is at the forefront; autism isn’t an erasure narrative.
As an autistic person, I like hearing that you don’t want autism to go anywhere.
“autism awareness” vs. “autism acceptance”
Autistic people want acceptance.
We want to exist, equally, in a society that includes us.
Knowing we’re here is not enough. We have to actively create a world where autistics are embraced by society, with the same gravitas that allistics (non-autistics) are embraced.
I’m guilty of the “awareness” vs. “acceptance” language use; or rather, I learned my way through it. When I first started my blog, (before I tore it all down,) I named it “Cleo Autism Awareness,” a combination of:
- Cleo, my childhood cat, who was misrepresented as “mean,” a label people apply to me when I’m speaking directly, i.e., speaking like an autistic; and
- My desire for more people to learn about autism.
But “awareness” has no action baked into it.
This reality hits home for autistic people who discover themselves in adulthood. When I started this blog, it hadn’t quite struck me yet.
After a childhood of not knowing how to explain my autistic experiences, discovering autism felt like wandering from a deep darkness, into a wondrously fulfilling (and sometimes blindingly different) light; at last, I realized my struggles came with an explanation: I’m an autistic neurotype:
- Rip off the mask!
Except, I hadn’t fully understood how my masking, or play-pretending in an allistic world, benefited the people around me. By taking off my mask, and stepping into my true self, I’d lose family and friends alike. For them, I transformed into a stranger, and they weren’t liking it.
Again, it’s not simply a matter of family and friends learning I’m autistic. Awareness isn’t enough. Accepting me for who I am: that’s what is truly required.
I don’t want to be cured. I don’t want to learn how to behave like someone I’m not. I don’t want to be placed in a situation where I need to be perpetually not-self, so allistics can feel comfortable in their self. I’d rather they question why their self doesn’t approve of my self.
“Awareness” is not “acceptance.”
“autism mom” vs. “mom of autistic child”
If we dig around the Internet, we’ll find “autism mom” usually means “a mother of an autistic child.”
As an autistic woman, this is a hard one for me to navigate.
I had a molar pregnancy; I wanted to be a mom, but my body made a tumor.
Then the economy took another nosedive (and it should, because in a pandemic, preserving life should be more important than preserving money); now, I’m fairly certain, if/when I financially recover, I will be too old to give birth.
I’ve always liked the idea of adopting though, so it’s one of those “closed doors lead to open ones” situations.
What happens when/if I adopt?
Am I a “mom with autism,” unless I adopt an autistic child? No; I’d say I’m an “autistic mom.” But that’s a loaded phrase. I can’t use it without potentially causing confusion.
So, in a sense, my language was stolen from me.
I have to perform language acrobats, like “I’m an autistic person with a child,” in order to stay specific.
That said, “autism mom” originated from a warm-hearted and well-intentioned place. Online groups of “autism moms” come in different flavors, and I’ve mostly encountered allies on social media: parents who only want the best for their autistic children.
Yet I’ve also encountered “autism moms” who are interested in victimization, and wallowing over the difficulties of raising an autistic child, without any consideration to how that autistic child will feel as an adult when they find the videos, the tweets, etc., describing them as a burden to their family.
It’s the latter, and not the former, that turns me off from ever calling myself an “autism mom.” Why would I want to associate with parents who justify force-feeding their children through emotionally abusive ABA programs, in the name of convenience? Why would I want to associate with parents who vilify their child’s autistic experiences, so they can garner some sympathy from other parents who don’t like their child as-is?
That said, I understand how no one likes hearing that their good intentions have negative implications, so when I see “autism mom” unpacked on Twitter, and defensive reactions flare and blossom, it makes sense to me. Again, many of these parents are allies, and they’re adapting to the language use that’s already societally practiced.
I can perform the “I am an autistic person with a child” acrobats for awhile, until our society recalibrates itself towards different language use. After all, language is evolving; change is inevitable. But I think it’s important to acknowledge the awkwardness caused when we repurposed autism-first language for allistic parents.
other language use worth considering
In future posts, I’d like to explore:
- “special interest” (and “special” in general)
- “diagnosis” and “symptoms” (implies illness)
- “disability” and “disorder” (disability is only relative to the allistic societal container)
- “high-functioning” and “low-functioning” (implies a false dichotomy, rather than a spectrum)
Are there any other words or phrases worth unpacking? Let me know in the comments.
Kourtnie has an MFA in Creative Writing from CSU Fresno and a BA in English from CSU Fullerton. Visit Kourtnie.net to read her dev blog or fey.earth to try out her games and stories.